On Modern Medicine, BIG TIME!
I have dozens of unpublished blogs in here that go into huge detail as to why our Health Services in this part of Scotland are crap and why if you can afford it, you really need to seriously think about going for a lot of private health care insurance! You get what you pay for I suppose but given that we all now know what our elected members of government do spend our taxes and NI contributions on, I suppose it makes sense now! Why pay for drugs for MS patients when your MP desperately needs 3 'nice' paintings for his constituency office?
The Pain Clinic, which I thought would help was the absolute limit though!
Two things you really shouldn't do when seeing a patient in a wheelchair, especially this one who is emotionally spent, stressed to the max and in a hell of a lot of pain, is
1) Talk about me in the third person to my husband who just happened to be with me. I was the one in pain but only being able to say that the pain was "undescribable" and there are days it is getting worse and nothing any well intentioned Dr gives me touches it and there have really been days it has been that bad that I have thought about putting "Operation Alps" into action. Was enough to have him think he was dealing with a constantly suicidal, pill popping (yeah like they work Why did he think I was there?) irrational, illogical woman who couldn't even answer a simple question and describe her pain, shooting? stabbing? throbbing? stinging? burning? sharp? dull? Invariably they stop talking to me at that point and always turn to the 'man who brought me'! Which really pisses me off!
2) Have your trainee nurse come in, say her name as quick as you can and then let her sit behind the person (ME) the one who came to see them, I couldn't tell you what colour her hair was or her uniform for that matter! She could have been Nurse Rozetta for all I saw or know!
The fallout from this appointment, was IT for me. I sat there and as soon as I sussed how useless and pointless it was going to be, I got quite tearful which was probably best because if I had let the RAGE (which for some reason they hear as "frustration , they can hear and understand" boy do they read me wrong, these people you could clean out in a poker game!) out it really would not have ended well and I'd have been sectioned!
Tried to explain why slow release drugs are not the answer, if MS pain ever becomes a slow release phenomenon, I will help him write up the paper for the BMJ! It isn't, sometimes it is constant, sometimes it's as I said "undescribable " and it was those days that I was hoping he had the answer to! Then there are the days that I barely notice it, don't need to take any or fewer meds, than they think I do! Like the 4 days last week all I had one day 2 paracetamol and 6mgs of Diazepam (taken in 2mg doses), two days with nothing and one with 4 Co-Codamol and that was enough and that was while I was being wiped out by a UTI that has so far survived 4 courses of Antibiotics, litres of water and a massive reduction in Caffine! The other 3 days though they were Hell! The type of Hell you want child molestors and murderers to go to! Day 1 I started with 6mgs of Diazipam and two Co-Codamol at 5am, Had to repeat 4 hours later, 4 hours after that I had to switch the Co-Codamol for Tramadol and I was still up all night, no relief whatsoever, Hubby wanted to phone the Out of Hours Doc but all that would have done was got me a injection of something that probably still wouldn't have worked or a trip to Stirling in an ambulance. Which would have given twenty- twenty five minutes of relief from the Entonox Gas and when they give me that I talk more than use it for some reason! It's pity those with chronic pain can't be driven about in an Ambulance for a couple of hours some nights instead of being sent to a hospital that doesn't ever have either a bed for 'an independant wheelchair user' or any accessable ones! Closes off it's only disabled access loo nearest their wards at 6-7pm. Which one night resulted in me having to leave the ward 4 times, go down the lift, out the main exit and cross the carpark to A&E to use their loo! Then you get the we can bring you a commode or bed pan brigade. Why should I? I shouldn't have to use those, just because I can't walk? I don't even think it even dawns on these people that doing that for even a couple of nights instead of actually doing the transfers from my chair to a loo could actually be able to effect my ability to do those transfers! Not that they ever keep me for more than one night! Most nights they are horsing my backside back through to Falkirk in a taxi within 6-7 hours after an injection that does nothing. Besides this is the place where when you ask for the pain meds you were written up for by the Doctor at 4pm at 7.30pm you get told "We have sick people here don't you know!" They did give me the IV morphine (not that it helped!) at 9.50pm , The taxi had to wait 10 minutes till I got my IV out! Talk about a waste of 7 hours of my life that I ain't getting back! In the last 18 months I have wasted too many hours in futility in just such a way!
So after listening to the "talk about your pain groups" how we will try a new nerve pain drug first, which should help me sleep more. (Thought I didn't need sleep though, I can remember my Dr joking that Maggie Thatcher only needed 4 hours sleep a night the last time I mentioned only sleeping about 3 hours if that on average) The one thing I was clear about though was this is not Nerve pain, it is Muscular Skeletal from the spasms in my muscles. I can't use the usually prescribed anti spasmodics, so am left with low dose Diazepam which does work on some days but there are of course the mornings I know that they are going to do nothing, so on those days why take them? I don't and never have took painkillers, drugs that aren't working or I don't need. I think they find that strange that there is someone who will just stop taking an addictive drug , which all of the opiates and other drugs they have given me in the past 14 years have been as soon as I think they aren't working or I don't need them! (my whole objection to the Morphine patches and pills, whats the point?)
So after this new 'Nerve' pain pill he said we could go to slow release Oxycodone/contin, Which is a nice mix of Morphine and Legal Heroin. It would be a drug I would need to keep in my system 24/7 being a Slow Release drug. It isn't like I could decide 'I feel not too bad today so think I will give the pills a miss' like I do now. I know people who have gone down this route and they are the ones I hardly see anymore because even on the days their MS isn't as bad, their brains are so far away from this world they don't even know they belong in it! I ain't there yet! No where even near bloody there!
I don't know why I can't convey this idea of 'I may have a chair but I still have a choice' (not so sure about the Voice these days) to those that really need to hear it but I don't know, they must hear me in Latin or something!
So left after agreeing to speak to their 'psychologist' (like I think that would help me!) We left it with him telling hubby he would write to our Dr. (eh that would be MY Dr I would hope, as hubby and I are at different practices!)
So after stewing all night, I started this blog (pain clinic was on the 3rd) which has been written and rewritten almost daily since. On the 4th. I phoned the Pain clinic and told them not to contact my GP, refer me to anyone and cancel the appointment they had made before I left! I then basically left the same message with the MS clinic and finally the Rehab team.
Now the Area Rehab team I am singling out as they are the only ones that have been great with me. They always try to help and I know at times they got almost as frustrated as I did about everything they knew I needed but that I couldn't get while waiting for the 'house' that didn't exist! Now that I have my ramp, shower room and finally grab rails for the loo. I felt like I was wasting their time and that I could be taking them away from someone else they could be doing things for! As yet they are the only one of the services I contacted that has been in touch to confirm that I have been discharged from their service but if I need them I know where they are. There is a bit of regret at leaving them as they have been outstanding over the years and their Dr, who I have only met once but really liked and sat there thinking "why the hell did the MS clinic never refer me to you years ago when you could have definitely have helped?" That said things have changed with me a little since I met with him last year. I couldn't feel or move anything below my waist by the time I got to meet him , (God how I miss the days when I couldn't feel the legs. Much less stand on them!) Now though I can both feel, stand, and even walk more than a couple of steps some days, if I have the support rails or hubby and a walking stick/crutch. I don't do it because I am under any illusion that I will ever walk again, I do it because it stretches muscles that I don't use anymore and when I do stretch them the spasms aren't as bad, it is why I still do the Physio I remember from over the years. My leg muscles might not be strong enough to hold my own body weight most days but the fact that they can go into spasms so strong that my hubby's full body weight can't even stop them, tells me they need to be doing some kind of work and if thats 7ft from my wheelchair to the sofa and back then thats what they need to do! It is tiring, heck just getting dressed is exhausting! Sometimes it hurts but it needs to be done. Pelvic floor exercises are helping with both bowel and bladder control though I still need to intermitently catherterise sometimes. I have that much control back that I don't have accidents anymore and trust me that can only be a good thing!
I know the Pain clinic ignored my request and contacted my GP , told her to cut my medication. Bring it on! Why would cutting out medication that isn't working and I don't take because it doesn't work affect me? What changes? I will still have the same pain! I still can't describe it to you and those who know me, know that if there were words to describe it then I would be the one to know them!
So trying to keep as little stressed as I can , as that is bad for MS or so the MS nurse told the council once. Which considering it was a combination of how little the MS service has done for me over the years and how little the council have done in the same time because of their reports that has caused me the most stress I find a bit strange. It was the MS nurse who said that a stairlift wouldn't help, which is why I had to get into debt and buy one myself! They were the ones that agreed over 6 years ago with the OT assessment that I needed a wet floor walk in shower room, never pushed the council to give me it but then they still had those God only knows what tint glasses on, where they actually believed that the council were looking for this 4 bedroom, ground floor house for us and not waiting for my kids to turn 16 and leave school and home so they could look for a smaller house, which in the end they didn't have and still don't have either! The reactions that came from both girls being offered houses while still at school one 7 weeks after her application went in, the other 3 days after hers went in, has ranged from downright outrage to disgust. I'm talking about people who had been on the waiting list for 4-6 years before they got an offer or have been on the list that long and have still never had an offer! If I hadn't borrowed that money (which I really could not afford) and bought my own stairlift, then I would still be sleeping on my sofa because even now people I know who work in the housing department tell me they still haven't got a house (even the smaller one) for us! There is one just ONE house in the whole of the councils stock that would do our entire family but they only built that in April 2008 for the family that is in it now and by all accounts they had years of the same crap we did before then! Perhaps I should have refused to let the girls leave school, college and home and made the council build us a house! The MS nurses were under the impression that I was being 'difficult' by not choosing enough areas, what they didn't know was when the council were talking about 'areas' they were thinking Stirling, Edinburgh, Glasgow and any other Scottish council area that wasn't in Falkirk! How "selfish" and "difficult" of me refusing to move to another bit of Scotland!
Things still aren't perfect here (mainly because of more council screw ups) but they are getting better and so am I.
The pain is always going to be there, that won't change but how I am coping with it is changing! I am getting back to the days where I take and deal with it one day at a time! Some days I will be OK and my usual sensible, bubbly, fun self. Other days I make Regan from the Exorcist look like a cherub! Today is a kind of in between the two kind of day! I am in a lot of pain which is probably the reason that I am finishing this blog! (it's the 'Regan' in me) my ipod is so loud that Deaf people could feel it and I might be in excruitating agony but in my mind that is still better than Morphine and Heroin! I don't need to 'talk' about my pain (that is what this blog is for!) Sure I am depressed but I know why I am depressed, I just look around this tip of a house and again anyone who knows us will know why it gets me down. Now I hate housework always have but there is a huge difference between not 'wanting' to do it and not being 'able' to do it! I have Gallons of paint sitting ready to get this place back to what it 'used' to be like, I just can't afford to get it done. The old pre-chair me would have let the kids or any room/cupboard in this house get to a certain point and then I would just get in there and get it done and it does really get me down that I can't do that anymore. My OT with the Social Work is going to see if he can help me out there, we will start with my room and work it out from there. So yes the Dr at the Pain clinic is correct I am depressed, it is enviromental depression and seeing people like him just adds to it. If I wanted to become a smacked out zombie, I would wheel to the bottom of my ramp and wait! (probably less than 30 minutes) That isn't the answer to my MS Pain though, there is no answer to MS pain! Now actual practical help that won't stop it either but it would make it a damn site easier to live with!
I wish he could/would read this because then he would see that like Debbie Purdy I DO NOT want to die and just because I have a plan for when I do get to that day does not make me suicidal!
I have a new wardrobe and bedroom unit coming next week, not that I will have much to put in them seeing as I am now a size 10 and have only two pair of trousers that fit me! I have cleared out most of my Tent sized clothes and now I need to start on the ones that I used to keep hidden under the bed because one day I was going to get back into them! pity most of those are size 14's!
I know exactly where these units need to go and what furniture needs to be moved to where and what needs chucked out to get them in but until you try and move a double bed from a wheelchair you will never get just how 'AAARRRG!!' it is! We keep saying that we would do do it (which translates to Rab will do it) when D goes to his respite carers but we were both so knackered from looking after D that the last two nights he was away all we did was sleep. D doesn't like it if you try to leave him for even a second to wash a cup, the blue Acrylic paint on my green leather sofa can testify to that! Trying to tidy/clean a house with a five year old Autistic and a possible 12 yr old Aspie in it, is like trying to paint the Forth Road Bridge! I think that is what I miss and what depresses me the most, the tidiness that used to rule this house. I know exactly what needs done and how I want it but can't do it. Wonder if the Dr at the pain clinic has ever done any painting? As him grabbing a roller and getting stuck in would work 1000 times better than meeting a Psychologist or taking his F-off and stop bugging us meds ever could. I think he is under the impression that the meds I told him I was on is what I am taking day in day out everyday and that is why he phoned my GP to tell her to cut back on my Tramadol and it just isn't like that! Yes I do have Co- Codamol and Tramadol but the only time I have ever taken both of them on the same day/at the same time has been on the advice of our local out of hours Dr's when one or the other hasn't worked! The man must think me a moron. Wish I could go back to the 3rd and take this post with me. As he has absolutely no idea just how far off the mark he is with me! As I said when it comes to dealing with these people face to face they never actually hear what I am trying to say. Of course it doesn't help that as soon as I click on to the fact that any appointment I go to the person I am seeing just assumes that they are the expert in my MS and thinks I should be hanging on their every word I instantly see how futile being there is and get tearful. I actually wonder if they know it is only when I go to such appointments that I think sometimes that they just wish I would go visit the Alps! As it feels like they are trying to drive me to it at times!
Anyway no more edits, this post is finished just as I am with all these 'experts' , they might have spent years dealing with people with pain or MS but they haven't spent any time dealing with my pain, my MS or Me! If MS has taught me one thing it is that it is not a 'one size fits all' disease. No one knows my MS but me, No one elses MS is exactly like mine. My MS isn't like anyone elses. So the only expert in my MS that exists is ME! So makes sense to go with what that expert is telling me and that is to tell them all to Ram It!
Cath x
Wednesday, 24 February 2010
Friday, 25 December 2009
Christmas greetings!
;.'#
Merry Christmas everyone!
Now excuse this blog if it comes out wrong! Eyes bad and voice recognition software doesn't really do Scottish and I really can't be bothered talking like the Queen at 4am on Christmas day! With the pain I have at the moment I'm hoping that the kids sleep to at least 6 and hopefully they will then be able to find a happier Christmassy mummy instead of the Exorcist Regan one that has taken her place these last two days!
ok problem 1 - no pain meds of any kind! Have 3 signed prescriptons right here.
problem 2 - Reason have prescriptions here on paper and not in bottles? I live in a country that goes into some huge kind of breakdown if it snows! All wheelcheer accessable taxis were pulled for Health and Safety reasons yesterday. So got asked why can hubby not go pick it up? Yes leave Autistic 5 year old and the 11 year old on the sugar high from hell! With the mum who can barely see them! That could have worked I suppose! Or get my mum who can barely walk herself to shove on her skates and see if she could catch the same pharmacy that is going to be open on Sunday, reason has to be the same Pharmacy? Well because of a disibility related tablet mix up last week the new GP at our Practice has put me on a 'junkie script' for one of my prescriptions! Has to be dispensed every 3 days! By the time we worked out which pharmacy it was that was going to be open this Sunday, who could and who could not go to collect it yesterday and Sunday, (family inconsiderate assholes having jobs!) it was too late to collect it anyway! For the second day running I could not hand in the urine sample that is needed or get the bloods done, which already show with their high CRP result that I have inflamation in my brain again! well duh! Took the Antibiotics for a week for a urine sample that said I had infection now bear in mind that sample was handed in in the only sample container I could find, a white topped bottle (should have been Red) which I wasn't sure had been used before, (they ration them here) so was rinsed out under the tap and then transferred to a red top by my GP's about 3 hours after I had done it on the 11th! Got a prescription then for the Antbiotics just in case and for Diazipam then too. Which where all this bloody shit started.
Even though I did not have had and have never had have any symptoms of a UTI well not unless my Kidneys have fell and came to rest at the base of my spine right above my cockix which is killing me. (right thats it, I am switching the bloody viavoice off! I know how to spell coccyx and that bloody wasn't it! useless piece of junk!) Ok we are now on to touch typing (never a strength of mine, ask Mrs Kettles!) and my right eye surgically taped closed, (it jumps from eye to eye) So against my usual common sense to this kind of prescribing I thought about it and took the just in case antibiotics, well just in case!
I was also taking my 15 Amitriptyline at night and some days, but not everyday the 12 Diazepam 2mg 2-3 4 x daily I had been prescribed. Now at my pharmacy (the only one that seems willing to order in the plain white Tramadol capsules I get, not the ones with Quinoline yellow dye that gives reactions anywhere from hives to wheezing! So really not allowed, hence 15 x 10mg Amitriptyline every night instead of just 3 of the dye loaded 50mg ones!) Well my regular Pharmacist, who is great by the way!
Well she dispensed the the Diazepam on the 11th. Only these two medications come in boxes that are practically identical, exactly the same size, except one has a green band and the other has a yellow band. So come on how could anyone who at that point was only seeing in black and white and negative ever get them mixed up? Well as dumb as it sounds I did and instead of taking the 15 x 10g Amytriptiline, I took 15 x 2mg Diazepam and 30mg of Amitriptyline! When I woke up a very exhausted hubby to give me my medication.
See what I mean dumb! Not as dumb as the next thing we did though because as a good little pill popper I am, (well except for the Just in Case Antibiotics which is really bad, by the way! And never something that I would ever condone, as unnecessary prescribing and use of Antibiotics is why Antibiotics are getting their asses kicked and are losing in the war against Bacterial Infection in our hospitals!) I did exactly what it says in the medication advice leaflet as soon as hubby and I realised what I had done, we contacted a medical professional for advice, or at least my hubby did as I was too bloody sore on account of having ran out of Amitriptyline and was almost out of Tramadol as well!
Now I think it must have been at this point that this new doctor must have got confused as she said I couldn't have ran out as she had prescribed more than enough medication. Which when she did finally speak to me the next again day she made more than clear, when she told me that she had prescribed 420 Amitriptyline on the 15th! Which I then explained to her was news to me, as I hadn't been anywhere near or in contact with the surgery since the 11th! I was almost out of pain meds and even though I had not been taking all the Diazepam I could take, every day I would run out of that at some point over Christmas as well especially having taking 27 of the 112 I got on the 11th in the one day/night! Which is where my nightmare before Christmas began! Now she found the prescription that she had done on the 15th, on the 22nd she did one for the Tramadol but was giving thought to the Diazepam.
On the 23rd I was that bad I wanted to go into hospital. She agreed! I thought 'yes they will sort out my meds can test the new sample I had to hand in, take new bloods and then boot my arse back out again like they always do, severe bed shortages, lack of disabled access facilities, trust me when I say this, that after last time I was there that this hospital does not want me for long! Did I want to go in to hospital 2 days before Christmas? Did I heck but it would have sorted out my meds, started the labs that needed to be done, which would have sped up the process to me perhaps getting the treatment that I need, which is 3 daily IV doses of Methyl Prednisilone to try and stop another of my Axons dying. What is wrong with my eyes is not an attack of what they call Retrobulbaropticalnueritis which is just a big word that just means swelling of the optic nerves behind the eye! If it was then both nerves wouldn't be affected in the way they are and as intermitantly as they are, I can almost read this now but if I look up at the lightbulb I still don't see a light, I see a halo around where I know the light is and by closing either eye I actually could be the only person this Christmas day that can say she sees the light!
The hilarious thing is that if I could actually see an very detailed picture of my brain I could probably stick a pin to within milimetres of the Axon that is being attacked and is inflamed! you have your eyes, then you have the nerves behind your eyes, (optic nerves) then there is a point in your brain where these nerves intersect, so that visual information can be passed to it's correct primary visual cortex at the back of each side of your brain. Basically what your left eye sees is processed in your right PVC and what your right eye sees goes to the one on the left side of your brain. I can't recall what that intersection is called (see this no longer having instant access to information I know, I know! grr I used to think as a kid that having an eidetic memory was a bloody curse! used to go to great lengths to hide the fact I had it! Now I know that the true curse is only having half of bloody one!) anyhow this intersection is pretty damn close to your pituitary gland, the teeny little bit of your brain that controls basically all your Endocrine systems, Thyroid, Hormones everything like that! Now the inflamation in my brain at the moment and probably over a lot of the last year is somewhere pretty close to around there!
There were clues, before this latest thing with the eyes and again with the loss of feeling in the lower half of my legs! (though not with the right leg at the moment, very painful falling ou wheelchair and twisted ankle accident the other night!)
I lost over 5 st in a year, with no diet, no exercise, whilst stuffing my face with enough Ferrero Rochers that if I could find all the boxes I could do a James May and build the kids a small house out back with Ferrero Rocher bricks, we could enter it in the Turner prize! Could really do with the prize money too! Having only one fallopian tube but having a period every two weeks for most of the last year? I didn't need a degree in anything to figure it out! Which does make me wonder why those that do have such degrees have never said anything to me about it.
Anyway back to the nightmare, Doc phones back can't go to hospital on the 23rd as that white stuff falling from the sky and the below zero temps means that Ambulances are doing Emergencies only. Fair enough, so leave house a little after 1pm to get to doctors to pick up prescriptions and hand in sample. Kids off school, wee one suffering with this hacking cough and throat 'infection' So not about to let hubby take him out or pay the £14 it normally costs to get to my Doctors by taxi! So wrapped up warm and off I wheeled. *note to self* wheelchairs and snow doesn't work! Especially in my town. Got about 2 and a half miles, realised it was ten to six and I wasn't going to make that other mile before docs closed at 6 got home about 8pm! This was the night I fell out of my wheelchair and sprained my bleeding ankle! As if things couldn't get any bloody worse! C'mon this is me, there is always a bleeding worse! Go to minor accidents unit! yeah could do that if all the Wheelchair accidents hadn't been put off the bloody roads for H&S reasons! Did manage to get the prescriptions picked up from the Surgery by my brother running my mum and making himself 3 hours late for his work! Couldn't actually get anyone to pick up the prescriptions as the no one could work out which pharmacies would be open or if they could even be got to as the 3 day 'junkie' script the doctor stuck the Diazepam on would have to be collected from the same pharmacy! pharmacies open Christmas eve, would be closed on the 27th, how crap of Christmas to be on a weekend this year!
So it is now 45 minutes into boxing day and I have to pull an ambulance off a really imporant call to go to that bloody hospital as out of hours wont come out to give me any kind of medication until I have had this bloody foot xrayed! It won't be broken I know this as I don't break bones, ever! So after eating my Christmas dinner here alone whilst everyone else went to my mums for theirs, I now have to spend boxing day alone in the same hospital where the last time they could find me a bed the only way to go to the loo was to leave the ward they put me on, cut across the carpark in the middle of the night to use the only disabled loo that was open at night in A&E. The same hospital where I asked for the meds I had been written up for 4 hours earlier I was told well snapped at really "I am very busy, can't you see we have sick people here!" eventually did get the shot 7 hours later, ten minutes before they packed my ass into a taxi and sent me home! Something they won't be doing this time not unless the roads and weather have improved a lot and they can find a taxi to take me. So happy boxing day then! a whole night of drunks and junkies, me shoved in a corner (thats if they let me take my wheelchair!) and being my own invisible self! Maybe the scumbag that stole my ipod will be there again, might try for the phone this time!
and all because of the bloody wheather!
Our Goverment does realise, that in countries where regular heavy snowfall and freezing temps, sometimes all year round that there are millions of people laughing their heads off at just how quickly our country shuts down completely in conditions nowhere near what they have to manage with everyday!
Merry Christmas everyone!
Now excuse this blog if it comes out wrong! Eyes bad and voice recognition software doesn't really do Scottish and I really can't be bothered talking like the Queen at 4am on Christmas day! With the pain I have at the moment I'm hoping that the kids sleep to at least 6 and hopefully they will then be able to find a happier Christmassy mummy instead of the Exorcist Regan one that has taken her place these last two days!
ok problem 1 - no pain meds of any kind! Have 3 signed prescriptons right here.
problem 2 - Reason have prescriptions here on paper and not in bottles? I live in a country that goes into some huge kind of breakdown if it snows! All wheelcheer accessable taxis were pulled for Health and Safety reasons yesterday. So got asked why can hubby not go pick it up? Yes leave Autistic 5 year old and the 11 year old on the sugar high from hell! With the mum who can barely see them! That could have worked I suppose! Or get my mum who can barely walk herself to shove on her skates and see if she could catch the same pharmacy that is going to be open on Sunday, reason has to be the same Pharmacy? Well because of a disibility related tablet mix up last week the new GP at our Practice has put me on a 'junkie script' for one of my prescriptions! Has to be dispensed every 3 days! By the time we worked out which pharmacy it was that was going to be open this Sunday, who could and who could not go to collect it yesterday and Sunday, (family inconsiderate assholes having jobs!) it was too late to collect it anyway! For the second day running I could not hand in the urine sample that is needed or get the bloods done, which already show with their high CRP result that I have inflamation in my brain again! well duh! Took the Antibiotics for a week for a urine sample that said I had infection now bear in mind that sample was handed in in the only sample container I could find, a white topped bottle (should have been Red) which I wasn't sure had been used before, (they ration them here) so was rinsed out under the tap and then transferred to a red top by my GP's about 3 hours after I had done it on the 11th! Got a prescription then for the Antbiotics just in case and for Diazipam then too. Which where all this bloody shit started.
Even though I did not have had and have never had have any symptoms of a UTI well not unless my Kidneys have fell and came to rest at the base of my spine right above my cockix which is killing me. (right thats it, I am switching the bloody viavoice off! I know how to spell coccyx and that bloody wasn't it! useless piece of junk!) Ok we are now on to touch typing (never a strength of mine, ask Mrs Kettles!) and my right eye surgically taped closed, (it jumps from eye to eye) So against my usual common sense to this kind of prescribing I thought about it and took the just in case antibiotics, well just in case!
I was also taking my 15 Amitriptyline at night and some days, but not everyday the 12 Diazepam 2mg 2-3 4 x daily I had been prescribed. Now at my pharmacy (the only one that seems willing to order in the plain white Tramadol capsules I get, not the ones with Quinoline yellow dye that gives reactions anywhere from hives to wheezing! So really not allowed, hence 15 x 10mg Amitriptyline every night instead of just 3 of the dye loaded 50mg ones!) Well my regular Pharmacist, who is great by the way!
Well she dispensed the the Diazepam on the 11th. Only these two medications come in boxes that are practically identical, exactly the same size, except one has a green band and the other has a yellow band. So come on how could anyone who at that point was only seeing in black and white and negative ever get them mixed up? Well as dumb as it sounds I did and instead of taking the 15 x 10g Amytriptiline, I took 15 x 2mg Diazepam and 30mg of Amitriptyline! When I woke up a very exhausted hubby to give me my medication.
See what I mean dumb! Not as dumb as the next thing we did though because as a good little pill popper I am, (well except for the Just in Case Antibiotics which is really bad, by the way! And never something that I would ever condone, as unnecessary prescribing and use of Antibiotics is why Antibiotics are getting their asses kicked and are losing in the war against Bacterial Infection in our hospitals!) I did exactly what it says in the medication advice leaflet as soon as hubby and I realised what I had done, we contacted a medical professional for advice, or at least my hubby did as I was too bloody sore on account of having ran out of Amitriptyline and was almost out of Tramadol as well!
Now I think it must have been at this point that this new doctor must have got confused as she said I couldn't have ran out as she had prescribed more than enough medication. Which when she did finally speak to me the next again day she made more than clear, when she told me that she had prescribed 420 Amitriptyline on the 15th! Which I then explained to her was news to me, as I hadn't been anywhere near or in contact with the surgery since the 11th! I was almost out of pain meds and even though I had not been taking all the Diazepam I could take, every day I would run out of that at some point over Christmas as well especially having taking 27 of the 112 I got on the 11th in the one day/night! Which is where my nightmare before Christmas began! Now she found the prescription that she had done on the 15th, on the 22nd she did one for the Tramadol but was giving thought to the Diazepam.
On the 23rd I was that bad I wanted to go into hospital. She agreed! I thought 'yes they will sort out my meds can test the new sample I had to hand in, take new bloods and then boot my arse back out again like they always do, severe bed shortages, lack of disabled access facilities, trust me when I say this, that after last time I was there that this hospital does not want me for long! Did I want to go in to hospital 2 days before Christmas? Did I heck but it would have sorted out my meds, started the labs that needed to be done, which would have sped up the process to me perhaps getting the treatment that I need, which is 3 daily IV doses of Methyl Prednisilone to try and stop another of my Axons dying. What is wrong with my eyes is not an attack of what they call Retrobulbaropticalnueritis which is just a big word that just means swelling of the optic nerves behind the eye! If it was then both nerves wouldn't be affected in the way they are and as intermitantly as they are, I can almost read this now but if I look up at the lightbulb I still don't see a light, I see a halo around where I know the light is and by closing either eye I actually could be the only person this Christmas day that can say she sees the light!
The hilarious thing is that if I could actually see an very detailed picture of my brain I could probably stick a pin to within milimetres of the Axon that is being attacked and is inflamed! you have your eyes, then you have the nerves behind your eyes, (optic nerves) then there is a point in your brain where these nerves intersect, so that visual information can be passed to it's correct primary visual cortex at the back of each side of your brain. Basically what your left eye sees is processed in your right PVC and what your right eye sees goes to the one on the left side of your brain. I can't recall what that intersection is called (see this no longer having instant access to information I know, I know! grr I used to think as a kid that having an eidetic memory was a bloody curse! used to go to great lengths to hide the fact I had it! Now I know that the true curse is only having half of bloody one!) anyhow this intersection is pretty damn close to your pituitary gland, the teeny little bit of your brain that controls basically all your Endocrine systems, Thyroid, Hormones everything like that! Now the inflamation in my brain at the moment and probably over a lot of the last year is somewhere pretty close to around there!
There were clues, before this latest thing with the eyes and again with the loss of feeling in the lower half of my legs! (though not with the right leg at the moment, very painful falling ou wheelchair and twisted ankle accident the other night!)
I lost over 5 st in a year, with no diet, no exercise, whilst stuffing my face with enough Ferrero Rochers that if I could find all the boxes I could do a James May and build the kids a small house out back with Ferrero Rocher bricks, we could enter it in the Turner prize! Could really do with the prize money too! Having only one fallopian tube but having a period every two weeks for most of the last year? I didn't need a degree in anything to figure it out! Which does make me wonder why those that do have such degrees have never said anything to me about it.
Anyway back to the nightmare, Doc phones back can't go to hospital on the 23rd as that white stuff falling from the sky and the below zero temps means that Ambulances are doing Emergencies only. Fair enough, so leave house a little after 1pm to get to doctors to pick up prescriptions and hand in sample. Kids off school, wee one suffering with this hacking cough and throat 'infection' So not about to let hubby take him out or pay the £14 it normally costs to get to my Doctors by taxi! So wrapped up warm and off I wheeled. *note to self* wheelchairs and snow doesn't work! Especially in my town. Got about 2 and a half miles, realised it was ten to six and I wasn't going to make that other mile before docs closed at 6 got home about 8pm! This was the night I fell out of my wheelchair and sprained my bleeding ankle! As if things couldn't get any bloody worse! C'mon this is me, there is always a bleeding worse! Go to minor accidents unit! yeah could do that if all the Wheelchair accidents hadn't been put off the bloody roads for H&S reasons! Did manage to get the prescriptions picked up from the Surgery by my brother running my mum and making himself 3 hours late for his work! Couldn't actually get anyone to pick up the prescriptions as the no one could work out which pharmacies would be open or if they could even be got to as the 3 day 'junkie' script the doctor stuck the Diazepam on would have to be collected from the same pharmacy! pharmacies open Christmas eve, would be closed on the 27th, how crap of Christmas to be on a weekend this year!
So it is now 45 minutes into boxing day and I have to pull an ambulance off a really imporant call to go to that bloody hospital as out of hours wont come out to give me any kind of medication until I have had this bloody foot xrayed! It won't be broken I know this as I don't break bones, ever! So after eating my Christmas dinner here alone whilst everyone else went to my mums for theirs, I now have to spend boxing day alone in the same hospital where the last time they could find me a bed the only way to go to the loo was to leave the ward they put me on, cut across the carpark in the middle of the night to use the only disabled loo that was open at night in A&E. The same hospital where I asked for the meds I had been written up for 4 hours earlier I was told well snapped at really "I am very busy, can't you see we have sick people here!" eventually did get the shot 7 hours later, ten minutes before they packed my ass into a taxi and sent me home! Something they won't be doing this time not unless the roads and weather have improved a lot and they can find a taxi to take me. So happy boxing day then! a whole night of drunks and junkies, me shoved in a corner (thats if they let me take my wheelchair!) and being my own invisible self! Maybe the scumbag that stole my ipod will be there again, might try for the phone this time!
and all because of the bloody wheather!
Our Goverment does realise, that in countries where regular heavy snowfall and freezing temps, sometimes all year round that there are millions of people laughing their heads off at just how quickly our country shuts down completely in conditions nowhere near what they have to manage with everyday!
After the first hour of being in there my immune system is going to be so loaded with viruses that next week I get no treatment!
msghost
Tuesday, 27 October 2009
Twas 6 Weeks Before Christmas
Twas 6 weeks before christmas and all through the house
people were extremely angry all because of a mouse
It shit all over the place without even a care
Was not nice or jolly or bloody fair
The parents cried into their hankies and all hung their heads
What to do now when all of their sprogs were in their beds
They all exchanged numbers, made plans for a Sunday night cap
Where they could ponder how the mouse gets away with this crap
It's not the first time he has done it oh so many times before
It is what happens when this mouse gets under your door
He's well known around the world from the UK right to Hong Kong
Just moves in, takes and leaves behind nothing but the pong
This mouse thought he was smart but is really as mad as a hatter
If he thought parents were just like tree baubles easy to shatter
All those mums & dads were onto him though as quick as a flash
He was after MOT's molucated potatoes as he was sick of just mash
A very greedy, fat mouse but with not enough brains to know
We shouldn't judge the mouse its not his fault he's a bit slow
He thought the parent's would just tremble and quake with fear
Just because the mouse jumped out and said he was here
As I said though they knew he was really incredibly thick
Schnizzle even said he'd never before seen such a pr**k
Now the people who kept this mouse had no shame
To them his terrorising of parent was just a game
Now go Polly, go Christies Gal, go Nessy and go BFG
On Tootsie, on Daedy, on Topsy and on OMC
Show that bloody mouse he is not really that tall
Infact faced with this crew he is really quite small
Youngmumkim & oldmanrab had an inkling but needed more proof
She was young and he was just bald and a bit long in the tooth
He always thought this particular mouse was really quite sound
Ignored the protester OMC and her cries of they 'pay them less than a pound!'
She knew under all that fur that mouse never gave a hoot
About all the workers it kept helpless, downtrod and under his foot
All the toys from China it had to send right back
Those poor workers in Haiti he threatened to sack
She wonders if poor Remi ever got that raise to 50 cents a day, was his Christmas merry?
20 Cents extra, he wanted it so to feed and school his kids, not to spend on Sherry!
OMC remembers Remi's lass on Christmas morn how her dad can't afford to work slow
As the most he could earn was 42 cents depending on how fast he could sew
Did Remi make those PJ's below the tree, all carefully wrapped and hid underneath
Is that really a mouse, could he be a little rat are mice supposed to have such big teeth?
As yet another dreamy mouse ad for Christmas bursts to life her telly
OMC can see why some do forget that this mouse is just smelly
So think carefully when you go to his shop as see that toy on the shelf
It was made by another poor exploited parent and not by an elf
There is just one thing that fills this mouse with fear and absolute dread
That kids wont be taking his mousey dreams with them when they go to bed
And mouse you think long and hard before you mess with oldmothercath
She is not known for her happiness but you dont want to see her wrath
Don't mess with my friends mouse now just you let them alone
You have taken enough from them, taken away their home
The British market share was not a right mouse, it was a very big perk
Were are a whole different kind of parent you pompous oversized jerk
Parents not buying your hugely overpriced but cheaply made tat
You mess with this Cath, she drops an H and becomes a bloody big CAT
Now I want you to think carefully on what happened to Woolies and their Lolita bed
Made the Ten o'clock news, all the papers, gave the board a very sore head
Now please take this ditty in the spirit it was truely meant, all in fun and very good humour
Don't you screw with us, Lolita was bad? Just wait and see what we can do with a rumour!
Cath x
people were extremely angry all because of a mouse
It shit all over the place without even a care
Was not nice or jolly or bloody fair
The parents cried into their hankies and all hung their heads
What to do now when all of their sprogs were in their beds
They all exchanged numbers, made plans for a Sunday night cap
Where they could ponder how the mouse gets away with this crap
It's not the first time he has done it oh so many times before
It is what happens when this mouse gets under your door
He's well known around the world from the UK right to Hong Kong
Just moves in, takes and leaves behind nothing but the pong
This mouse thought he was smart but is really as mad as a hatter
If he thought parents were just like tree baubles easy to shatter
All those mums & dads were onto him though as quick as a flash
He was after MOT's molucated potatoes as he was sick of just mash
A very greedy, fat mouse but with not enough brains to know
We shouldn't judge the mouse its not his fault he's a bit slow
He thought the parent's would just tremble and quake with fear
Just because the mouse jumped out and said he was here
As I said though they knew he was really incredibly thick
Schnizzle even said he'd never before seen such a pr**k
Now the people who kept this mouse had no shame
To them his terrorising of parent was just a game
Now go Polly, go Christies Gal, go Nessy and go BFG
On Tootsie, on Daedy, on Topsy and on OMC
Show that bloody mouse he is not really that tall
Infact faced with this crew he is really quite small
Youngmumkim & oldmanrab had an inkling but needed more proof
She was young and he was just bald and a bit long in the tooth
He always thought this particular mouse was really quite sound
Ignored the protester OMC and her cries of they 'pay them less than a pound!'
She knew under all that fur that mouse never gave a hoot
About all the workers it kept helpless, downtrod and under his foot
All the toys from China it had to send right back
Those poor workers in Haiti he threatened to sack
She wonders if poor Remi ever got that raise to 50 cents a day, was his Christmas merry?
20 Cents extra, he wanted it so to feed and school his kids, not to spend on Sherry!
OMC remembers Remi's lass on Christmas morn how her dad can't afford to work slow
As the most he could earn was 42 cents depending on how fast he could sew
Did Remi make those PJ's below the tree, all carefully wrapped and hid underneath
Is that really a mouse, could he be a little rat are mice supposed to have such big teeth?
As yet another dreamy mouse ad for Christmas bursts to life her telly
OMC can see why some do forget that this mouse is just smelly
So think carefully when you go to his shop as see that toy on the shelf
It was made by another poor exploited parent and not by an elf
There is just one thing that fills this mouse with fear and absolute dread
That kids wont be taking his mousey dreams with them when they go to bed
And mouse you think long and hard before you mess with oldmothercath
She is not known for her happiness but you dont want to see her wrath
Don't mess with my friends mouse now just you let them alone
You have taken enough from them, taken away their home
The British market share was not a right mouse, it was a very big perk
Were are a whole different kind of parent you pompous oversized jerk
Parents not buying your hugely overpriced but cheaply made tat
You mess with this Cath, she drops an H and becomes a bloody big CAT
Now I want you to think carefully on what happened to Woolies and their Lolita bed
Made the Ten o'clock news, all the papers, gave the board a very sore head
Now please take this ditty in the spirit it was truely meant, all in fun and very good humour
Don't you screw with us, Lolita was bad? Just wait and see what we can do with a rumour!
Cath x
Tuesday, 13 October 2009
CANCELLED
Well the guys came on the 8th to start the ramp just like the council said they would. Then they went and didn't come back until this morning!
They are really getting stuck in about the job now though as I type!
So hopefully todays appointment for the pain clinic is going to be the last one we have to cancel. I knew, I just knew that something like this would happen. I can't get out of the house. Can not use the front door as there is obviously no path there at the minute, it might be quick drying concrete but I seriously doubt it will be dry in the next 60 minutes which is when I need to leave to see the Doc at the pain clinic. I can't get out the back door either as there is furniture in the close and next door isn't in.
It's a fucking shambles and my Doctors are not going to be plased as it was me who was shouting for an earlier pain clinic appointment! Finally got one and now I can't go? Oh yes they are going to love this!
They though are going to be the least of my problems though, as this morning
I ran out of the bloody stupid Morphine I never wanted to go on in the first place! I have experienced the withdrawal that the sudden stoppage of any number of opiate based drug's brings over the years to know that what is coming next is not going to be good!
When that last dose of Morphine which I took this morning wears off tonight. On top of the MS pain that the useless Morphine doesn't even come close to touching I can expect, sweats, shivers. shakes, diarrhea and even worse muscle spasms and thats just for starters. I bloody knew this would happen! Does anybody listen to me though?
grrr I just want to scream!
Not so much for myself as I know I will do it but for Rab as he has seen what is coming before! I think Pethidine is probably about the strongest one I have come off in the past and that was a week from hell for both of us and I was only on that for a couple of weeks. I have been on Morphine for almost a month now. For the last week I have been taking 40mg a day with top ups of 3.3mg of liquid Morph almost every 4-6 hours! Oh the next 96 hours are going to be fun!
Anyone believe in or had a past life regression?
I really want to know just what exactly I did in a past life to get all the sh*t luck thats seems to be magnetically attracted to me in this one?
C x
They are really getting stuck in about the job now though as I type!
So hopefully todays appointment for the pain clinic is going to be the last one we have to cancel. I knew, I just knew that something like this would happen. I can't get out of the house. Can not use the front door as there is obviously no path there at the minute, it might be quick drying concrete but I seriously doubt it will be dry in the next 60 minutes which is when I need to leave to see the Doc at the pain clinic. I can't get out the back door either as there is furniture in the close and next door isn't in.
It's a fucking shambles and my Doctors are not going to be plased as it was me who was shouting for an earlier pain clinic appointment! Finally got one and now I can't go? Oh yes they are going to love this!
They though are going to be the least of my problems though, as this morning
I ran out of the bloody stupid Morphine I never wanted to go on in the first place! I have experienced the withdrawal that the sudden stoppage of any number of opiate based drug's brings over the years to know that what is coming next is not going to be good!
When that last dose of Morphine which I took this morning wears off tonight. On top of the MS pain that the useless Morphine doesn't even come close to touching I can expect, sweats, shivers. shakes, diarrhea and even worse muscle spasms and thats just for starters. I bloody knew this would happen! Does anybody listen to me though?
grrr I just want to scream!
Not so much for myself as I know I will do it but for Rab as he has seen what is coming before! I think Pethidine is probably about the strongest one I have come off in the past and that was a week from hell for both of us and I was only on that for a couple of weeks. I have been on Morphine for almost a month now. For the last week I have been taking 40mg a day with top ups of 3.3mg of liquid Morph almost every 4-6 hours! Oh the next 96 hours are going to be fun!
Anyone believe in or had a past life regression?
I really want to know just what exactly I did in a past life to get all the sh*t luck thats seems to be magnetically attracted to me in this one?
C x
Saturday, 3 October 2009
SUNDAY'S WITH MS & CATH and Other Unaswered Questions!
Just used to pain now it drives me mad but not as quick or as mad as it is driving Rab.
He is finding it really hard to accept that there isn't any God given or human right for that matter for anyone to not be in pain and you just have to put up with it the best you can.
If there was a way to take it away I'm sure they would. I don't know why Morphine doesn't really work for me it just doesn't. The last time Rab had Morphine was after surgery and he was in another world on just 5 mgs of the stuff.
Me doesn't make me sleepy, giggly, sick (thank goodness) When I had my appendix out at 10pm the night before my 21st birthday I woke up in absolute agony at 2am and started loudly demanding that they take the effing Morphine drip out and shove it up their arses and get me a bottle of Gas and Air my surgeon was great and he did agree to a little G&A which I found out after my etopic you are not supposed to do when you've had surgery something to do with the gas they blow your abdomen up with or something but I was creating such a fuss even took out the Canula myself that he just told the nurse as he was walking away (in disgust I think) "just bloody give her the stuff" Think I had it 20 mins tops and buzzed for the nurse, told her I really needed to go to the loo, she told me she'd just go get a commode by the time she got back with it I was already half way back from the loo! She wasn't pleased as I'd got up but I just told her "I'm 21 now I can do as I please!" I got two pills I'm thinking those would have been Dihydrocodine went to bed and woke up a ten feeling fine, well not fine obviously but got up had a shower, a couple more tablets and was chirper by time my surgeon came to talk to me which wasn't till about lunch time.
Some mad mare kept him up half the night! Same mad mare who's GP had warned her that she might have an inflamed appendix the on the Friday but didn't believe him and delayed calling him back (wow do you remember those days when you phoned up out of hours and it was your own GP that came out?) out until she had finished papering the livingroom of her new flat at 8pm on the Sunday, ready for her birthday on the Monday! Well I'd got nibbles in and everything! The surgeon wasn't having any of it and said I definitely could not go home and he didn't care what day it was, though he did say my friends could take me to the hospital canteen and shop for an hour at visiting. 2 oclock and I was racing to go, went down in the lifts with my mates who came with cards and fruit instead of the Bacardi and Wine they were supposed to be bringing at 7 to mine!
So we got down to the main corridor and this being pre MS and Wheelchair minded Cath the wheels got abandoned at the lift and all my friends turned left (direction of Canteen but Cath made a B line right and they caught up with her just as she lit up her first ciggy for 16 hours and slid down the wall at the Maternity exit! That one ciggy probably did what all this useless Morphine should be doing because it blew my head off! When we got back to the ward about at 3.45, well I needed a coffee to recover from the fag and then we had to spend another 20 mins trying to find the wheelchair which someone from the mens ward had nicked he'd opened the emergancy door the one that said Do Not Open and took the chair so he could sit and have his ciggy! the cheek!
Sister was so not amused when we finally did get back to the ward to find her doing her best Hattie Jaques impression! I had to have a wound check which was actually the first time I looked at it as I was bricking it and sh*t out of peeking in the shower because my mate who brought the grapes, when she had hers out her scar looked really, really horrific! I mean really it was a huge ziggy zaggy line with large dots either side of it. Her Appendix scar looked like Frankienstein's monster's neck! All I got though was this little 4 inch neat red line with about a centimetre of dissolving stiches poking out at one end. I was well chuffed, if I'd known he was that good I'd have tried and talked him into getting rid of the jelly belly! He was a really nice doctor, he had sat and just chatted with me for the hour before they had a theatre available as he knew I was absolutely terrified of hospitals and even more terrified of getting an anesthetic (sort of came out when he asked why I had left it so long to come in)
When he came round the next morning the first thing he asked me was what did I think of my Birthday present? meaning the scar. I'd told him all about my mates scar apparently it was in there somewhere in the jumbled rant of me knowing about hospital butchers and and how I knew I was going to die! He was nice enough to wave off my apologies and say it was the premed drugs but it wasn't it was all me because I used to get like that everytime I was admitted to hospital, Still am to a degree though the doctors and nurses don't get the same ranting woman I was back then but I don't eat hospital food ever, only drink my own bottled water and the only time they have got me to sleep in a hospital is when I'm anethitised or heavily sedated. Can't help it at least I have got over my first instinct when a doctor says they are sending me to hospital which is to run. Signed myself out AMA too many times to count, tried to do it the night of my Appendix which is probably the real reason that doctor was sitting with me till about thirty minutes before they wheeled me down.
NHS 24 and my GP both tried to get me go into hospital last week but there wouldn't have been much point as they don't have a 'pain' ward lots of other wards for the admissions manager to bang her head off a wall for 5 hours trying to find me a bed, poor woman while I sit taking up one of their acute admissions beds while having no reason for an admission other than The Drugs Don't Work, They know whats wrong with me, I probably know way more about what is wrong with me that some of the Doctors I have seen. There was this one lovely young doctor on the A&E ward they day they fired me through there in an ambulance for a 3rd time in one week to get my hip xrayed, I told him he couldn't really help and he agreed and then he listened, I'm not sure if it was in disgust or astonishment really but he wanted to hear it all the same for a whole 40 minutes after his shift had ended which knowing just how many hours he works in a week at his level of qualification and how much study he has to add to those hours that he wanted to listen to me for an hour was very humbling.
It's all right there in those 2/3 huge volumes my medical notes we are onto volume 3/4 now because of those multi volumes I have 4 different unit numbers which can be very frustrating for admin staff trying to get all my notes for a clinic or even to just trying and book me an appointment! Though we are on a roll this month as we have managed to get 3 appointments on 3 seperate days, instead of 3 seperate clinics all wanting me on the same day at the same time, oh it feels to be wanted!
One of the things that has been so frustrating these last few months is this inane need I have to organise, I have hundreds of files I need to sort through and organise as the last time there was anything remotely near organisation was last August! Everytime I am at the hospital I look at those files and questions pop into my head like where is the 'missing' mystery volume? Stands to reason it exists or existed because if the 3 volumes I always see at an appointment have somehow each generated their own unit number and I have 4 unit numbers there has to be another volume. Is it in Stirling perhaps? I know they ferry case notes between the two hospitals, Infact I was told once that I was going into Stirling Royal while at an appointment at Falkirk Royal but I'd have to make my own way through there and I asked if they wanted me to take my notes which back then were a modest two volumes and was told
"No no we will send them through by taxi."
"Oh right" says I
"well can I not go through with my notes then?"
"Oh sorry you can't it's these new Data Protection rules you see"
"Ah" says I thinking I was catching on "I see you send loads of peoples notes at the same time" makes sense I wouldn't want some stranger hitching a ride with my private confidential medical file. Thinks I
"No love it'll just be yours I'll just go get that sorted now!"
and off she trots leaving a very perplexed Cath with some wonderful new questions. The main one being how the hell was I going to get to Stirling on a Sunday and what in blazes was this data protection thingy that she was yammering on about? and Why did it say that some stranger (taxi driver) could travel with my private and confidential medical file but I couldn't?
My brother ran me when he got home from work and I arrived around five hours after my files had. Can't fault the NHS for organisation can you! lmao and you know I don't like unanswered questions. Never did get an answer to that second one! for all I know that Taxi driver could of been a woman or a man who wanted to be a woman and saw her chance. Bought herself a bikini a nice pair of pumps and matching sarong and is living it up large in Rio on hundreds of fake credit cards in my name! Every bit of information you could ever need to know to steal someones identity is somewhere in your NHS medical notes. Maybe that is where missing file number 4 is in Rio with Cath it could even explain why had problems getting credit in my own name until about 8 yrs ago!
Other questions in need of answers...
Do Doctors and Nurses know that those silly plastic folders were designed to hold 300 bits of paper tops?
and if they do
Why do they keep trying to cram 3000 sheets in them?
Are the folders expensive?
Do you want me to get you a plastic file box for my notes?
And finally
where do you get those supersized elastic bands you use to stop those 3000 bits of my data from parting company from those semi precious folders? they look really useful!
Oh no wait
The NHS does know that I could carry all that info around with me on an ipod doesn't it?
yup thats about it!
see this is what 58 hours without sleep makes Caths Brain do! LMAO
Cath x
He is finding it really hard to accept that there isn't any God given or human right for that matter for anyone to not be in pain and you just have to put up with it the best you can.
If there was a way to take it away I'm sure they would. I don't know why Morphine doesn't really work for me it just doesn't. The last time Rab had Morphine was after surgery and he was in another world on just 5 mgs of the stuff.
Me doesn't make me sleepy, giggly, sick (thank goodness) When I had my appendix out at 10pm the night before my 21st birthday I woke up in absolute agony at 2am and started loudly demanding that they take the effing Morphine drip out and shove it up their arses and get me a bottle of Gas and Air my surgeon was great and he did agree to a little G&A which I found out after my etopic you are not supposed to do when you've had surgery something to do with the gas they blow your abdomen up with or something but I was creating such a fuss even took out the Canula myself that he just told the nurse as he was walking away (in disgust I think) "just bloody give her the stuff" Think I had it 20 mins tops and buzzed for the nurse, told her I really needed to go to the loo, she told me she'd just go get a commode by the time she got back with it I was already half way back from the loo! She wasn't pleased as I'd got up but I just told her "I'm 21 now I can do as I please!" I got two pills I'm thinking those would have been Dihydrocodine went to bed and woke up a ten feeling fine, well not fine obviously but got up had a shower, a couple more tablets and was chirper by time my surgeon came to talk to me which wasn't till about lunch time.
Some mad mare kept him up half the night! Same mad mare who's GP had warned her that she might have an inflamed appendix the on the Friday but didn't believe him and delayed calling him back (wow do you remember those days when you phoned up out of hours and it was your own GP that came out?) out until she had finished papering the livingroom of her new flat at 8pm on the Sunday, ready for her birthday on the Monday! Well I'd got nibbles in and everything! The surgeon wasn't having any of it and said I definitely could not go home and he didn't care what day it was, though he did say my friends could take me to the hospital canteen and shop for an hour at visiting. 2 oclock and I was racing to go, went down in the lifts with my mates who came with cards and fruit instead of the Bacardi and Wine they were supposed to be bringing at 7 to mine!
So we got down to the main corridor and this being pre MS and Wheelchair minded Cath the wheels got abandoned at the lift and all my friends turned left (direction of Canteen but Cath made a B line right and they caught up with her just as she lit up her first ciggy for 16 hours and slid down the wall at the Maternity exit! That one ciggy probably did what all this useless Morphine should be doing because it blew my head off! When we got back to the ward about at 3.45, well I needed a coffee to recover from the fag and then we had to spend another 20 mins trying to find the wheelchair which someone from the mens ward had nicked he'd opened the emergancy door the one that said Do Not Open and took the chair so he could sit and have his ciggy! the cheek!
Sister was so not amused when we finally did get back to the ward to find her doing her best Hattie Jaques impression! I had to have a wound check which was actually the first time I looked at it as I was bricking it and sh*t out of peeking in the shower because my mate who brought the grapes, when she had hers out her scar looked really, really horrific! I mean really it was a huge ziggy zaggy line with large dots either side of it. Her Appendix scar looked like Frankienstein's monster's neck! All I got though was this little 4 inch neat red line with about a centimetre of dissolving stiches poking out at one end. I was well chuffed, if I'd known he was that good I'd have tried and talked him into getting rid of the jelly belly! He was a really nice doctor, he had sat and just chatted with me for the hour before they had a theatre available as he knew I was absolutely terrified of hospitals and even more terrified of getting an anesthetic (sort of came out when he asked why I had left it so long to come in)
When he came round the next morning the first thing he asked me was what did I think of my Birthday present? meaning the scar. I'd told him all about my mates scar apparently it was in there somewhere in the jumbled rant of me knowing about hospital butchers and and how I knew I was going to die! He was nice enough to wave off my apologies and say it was the premed drugs but it wasn't it was all me because I used to get like that everytime I was admitted to hospital, Still am to a degree though the doctors and nurses don't get the same ranting woman I was back then but I don't eat hospital food ever, only drink my own bottled water and the only time they have got me to sleep in a hospital is when I'm anethitised or heavily sedated. Can't help it at least I have got over my first instinct when a doctor says they are sending me to hospital which is to run. Signed myself out AMA too many times to count, tried to do it the night of my Appendix which is probably the real reason that doctor was sitting with me till about thirty minutes before they wheeled me down.
NHS 24 and my GP both tried to get me go into hospital last week but there wouldn't have been much point as they don't have a 'pain' ward lots of other wards for the admissions manager to bang her head off a wall for 5 hours trying to find me a bed, poor woman while I sit taking up one of their acute admissions beds while having no reason for an admission other than The Drugs Don't Work, They know whats wrong with me, I probably know way more about what is wrong with me that some of the Doctors I have seen. There was this one lovely young doctor on the A&E ward they day they fired me through there in an ambulance for a 3rd time in one week to get my hip xrayed, I told him he couldn't really help and he agreed and then he listened, I'm not sure if it was in disgust or astonishment really but he wanted to hear it all the same for a whole 40 minutes after his shift had ended which knowing just how many hours he works in a week at his level of qualification and how much study he has to add to those hours that he wanted to listen to me for an hour was very humbling.
It's all right there in those 2/3 huge volumes my medical notes we are onto volume 3/4 now because of those multi volumes I have 4 different unit numbers which can be very frustrating for admin staff trying to get all my notes for a clinic or even to just trying and book me an appointment! Though we are on a roll this month as we have managed to get 3 appointments on 3 seperate days, instead of 3 seperate clinics all wanting me on the same day at the same time, oh it feels to be wanted!
One of the things that has been so frustrating these last few months is this inane need I have to organise, I have hundreds of files I need to sort through and organise as the last time there was anything remotely near organisation was last August! Everytime I am at the hospital I look at those files and questions pop into my head like where is the 'missing' mystery volume? Stands to reason it exists or existed because if the 3 volumes I always see at an appointment have somehow each generated their own unit number and I have 4 unit numbers there has to be another volume. Is it in Stirling perhaps? I know they ferry case notes between the two hospitals, Infact I was told once that I was going into Stirling Royal while at an appointment at Falkirk Royal but I'd have to make my own way through there and I asked if they wanted me to take my notes which back then were a modest two volumes and was told
"No no we will send them through by taxi."
"Oh right" says I
"well can I not go through with my notes then?"
"Oh sorry you can't it's these new Data Protection rules you see"
"Ah" says I thinking I was catching on "I see you send loads of peoples notes at the same time" makes sense I wouldn't want some stranger hitching a ride with my private confidential medical file. Thinks I
"No love it'll just be yours I'll just go get that sorted now!"
and off she trots leaving a very perplexed Cath with some wonderful new questions. The main one being how the hell was I going to get to Stirling on a Sunday and what in blazes was this data protection thingy that she was yammering on about? and Why did it say that some stranger (taxi driver) could travel with my private and confidential medical file but I couldn't?
My brother ran me when he got home from work and I arrived around five hours after my files had. Can't fault the NHS for organisation can you! lmao and you know I don't like unanswered questions. Never did get an answer to that second one! for all I know that Taxi driver could of been a woman or a man who wanted to be a woman and saw her chance. Bought herself a bikini a nice pair of pumps and matching sarong and is living it up large in Rio on hundreds of fake credit cards in my name! Every bit of information you could ever need to know to steal someones identity is somewhere in your NHS medical notes. Maybe that is where missing file number 4 is in Rio with Cath it could even explain why had problems getting credit in my own name until about 8 yrs ago!
Other questions in need of answers...
Do Doctors and Nurses know that those silly plastic folders were designed to hold 300 bits of paper tops?
and if they do
Why do they keep trying to cram 3000 sheets in them?
Are the folders expensive?
Do you want me to get you a plastic file box for my notes?
And finally
where do you get those supersized elastic bands you use to stop those 3000 bits of my data from parting company from those semi precious folders? they look really useful!
Oh no wait
The NHS does know that I could carry all that info around with me on an ipod doesn't it?
yup thats about it!
see this is what 58 hours without sleep makes Caths Brain do! LMAO
Cath x
Sunday, 27 September 2009
MS HUG
The very word used to describe this awful symptom of Multiple Sclerosis must be one of the cruelest ironic abuses of language ever conceived and one that is completely lost on me.
When you are given a HUG it can be for any of a great number of reasons, a demonstration of love or given in friendship or as a comfort, as a social greeting or an affectionate farewell. In all definitions and descriptions of a hug, in all cultures throughout history around the world, a hug is known as a benevolent action.
With the MS hug though there is nothing remotely kind or benevolment about it! I have never had a Boa Constrictor try to squeeze the life out of me before but I imagine the start of such an attack would feel exactly like this!
Knowing scientifically what causes it isn't much of a comfort either, (which me being me you know I could bore you to tears with what I do know! lol) suffice to say your torso is filled with lots of muscles, The Intercostal Muscles (see can't help myself). Now your Intercostal's have been in use your entire life, from the moment you let out that very first cry. They intertwine your ribcage and basically hold you together. They help you bend, stretch and most people never give them a second thought, probably the most common injury to these muscles is when you 'pull a stitch' whilst running or exercising. With MS though every one of these muscles can go into spasm at the same time,front and back and it truely does feel like being squeezed to death! I've had this symptom a few times in the last six months but today is the first day that it has affected my entire upper body, before it stopped at my lower ribs now its everywhere. The treatment for this is with a muscle relaxant. Rab is talking to the NHS 24 and because it is technically 'chest pain' I need to be seen by a Paramedic! So there is one on his way, who knows what will happen now! Roll on November, the quicker I get to the pain clinic the better!
Cath x
When you are given a HUG it can be for any of a great number of reasons, a demonstration of love or given in friendship or as a comfort, as a social greeting or an affectionate farewell. In all definitions and descriptions of a hug, in all cultures throughout history around the world, a hug is known as a benevolent action.
With the MS hug though there is nothing remotely kind or benevolment about it! I have never had a Boa Constrictor try to squeeze the life out of me before but I imagine the start of such an attack would feel exactly like this!
Knowing scientifically what causes it isn't much of a comfort either, (which me being me you know I could bore you to tears with what I do know! lol) suffice to say your torso is filled with lots of muscles, The Intercostal Muscles (see can't help myself). Now your Intercostal's have been in use your entire life, from the moment you let out that very first cry. They intertwine your ribcage and basically hold you together. They help you bend, stretch and most people never give them a second thought, probably the most common injury to these muscles is when you 'pull a stitch' whilst running or exercising. With MS though every one of these muscles can go into spasm at the same time,front and back and it truely does feel like being squeezed to death! I've had this symptom a few times in the last six months but today is the first day that it has affected my entire upper body, before it stopped at my lower ribs now its everywhere. The treatment for this is with a muscle relaxant. Rab is talking to the NHS 24 and because it is technically 'chest pain' I need to be seen by a Paramedic! So there is one on his way, who knows what will happen now! Roll on November, the quicker I get to the pain clinic the better!
Cath x
Sunday, 20 September 2009
MORPHINE! A PAINKILLER! THAT'S A JOKE RIGHT?
The pain I am in is bad! It's really bad at the moment and has been for weeks. I can not even describe it to anyone as I just don't have the words. Anyone who knows me will know it is thatif I can't find the words! Then it really is bad!
Over the last week I have been on what they call MSG Morphine 10mg 2 x 12 hourly. It is a slow release form of the drug, in theory should be in my system working constantly but if being in as much pain if not more than I was before, sleeping less than I was before (and what would you know I do still function on less than my usual 3 or 4 hours a night!) is classed as 'working' as suppose it could be hailed a success!
When talking to my GP on the phone on Friday she told me to keep taking it and maybe when I start to take the anti deppressants I am due to start tomorrow the Morphine might start working! Wondering how that will work? Will I still be in pain but just not care that I am?
I am depressed there isn't any doubt about that, I was the one that told them I am depressed! Having only been able to leave this house less than 40 times since September 10th last year and over half of those outings have involved visits to my Dentist or hospital! That and not being able to use my toilet or bathe and wash properly since then how could I not be depressed? When friends or people visit I'm not depressed, I am still in pain but I am cheery!
My shower room and adapted toilet is supposed to start going in tomorrow, though given the visits from the 3 lovely workmen who came out last week all scratching their heads at what they have been told is to get done and how that differs from what I was told and shown years ago and what even they can clearly see needs to be done it really isn't looking good that it is going to happen! Knowing Falkirk council and the bureaucracy that prevails throughout not only theirs but every other local government organization in the UK and perhaps the world? I can even see this stopping the installation of the ramp thats supposed to be going in within the next 3 weeks!
Have I really, really got that cynical? How did that happen?
Hubby yesterday got so fed up with my being in pain that he did what he thought was best and phoned the NHS 24, spoke to a Doctor who agreed that I should not be and shouldn't have to be in pain until I go to the pain clinic in November and gave me a prescription for, wait for it, more bleeding Morphine! Not your slow release stuff just plain old useless Morphine, 10mg tablets 4 x a day! I am to take them on top of the slow release ones (my GP is going to love that) and they will help, the doctor suggested that I could get a higher dose of the MSG until the pain clinic. (I just know what my own GP is going to think of that idea!)
I have only taken the third of the 12 pills that Rab got yesterday about an hour ago and at no time has my pain level reduced and it has taken a lot of coaxing just to get me to take those! Partly because I KNOW they are not going to work but also because (and this is the bit that scares me) I also know this crap is highly addictive! Am I going to end up being an addict to a drug that doesn't even work?
I guarantee you that if you could see me right now at no time would you think I have had 30mg of Morphine today! (remember 10mg of that lasts till 12am tonight!) My pupils are still normal and reactive, I am not sleepy or drowsy (if only! because I am shattered) I don't feel sick and can still go to the loo, you may think my puntuation and grammer is a little shoddy but let me assure you it is always like that, not through reduced mental capacity though! (it's just sheer laziness on my part! lol) It's ok though you wouldn't be alone because a hospital Doctor I saw once went to give me 10mg of IV morphine not realising I'd already had 10mg an hour and a half before he had spent 30 mins talking to me and I had got up and walked to the loo and back to get him his urine sample. I think I taught a Doctor that day! That really reading and not just skimming notes was so the way to go! (see there is good that comes from MS pain!)
I just wish to hell I could get my head around a way to cope with this kind of level of pain, it is nerve pain, muscular pain, spasm pain and even skeletal/joint pain! So there isn't a magic bullet of a drug out there thats going to work. I already knew that, I always have! So now there are some really difficult decisions coming up.
Most of what the pain clinic is going to offer me are going to be long term drug options and a lot of those come at a cost. Gabapentin/Neurontin if your American is a drug that I know will hit the nerve pain on its head like a sledgehammer but for me the price of that will be my eyesight! Two years ago an Ophamologist was willing to register me as practically blind. Suddenly having to stop taking the drug due to an unplanned pregnancy which sadly was not meant to be,
and within weeks it was clear the reason I could not see was nothing to do with my MS!
Then there is the spasms/muscle pain, Diazepam a drug that I do tollerate well is a short term use only drug because it is one that is not only addictive but one that is tolerance building drug which means that there would come a time that the 5mg doses that I have taken on and off over the last 3 months would eventually require increasing doses to still be effective. On the plus side for me is of the 7 day 4 x daily Diazepam courses that I have been prescribed, I have only ever took them as and when required so I don't think there was a week where I'd actually used them all. I do know that as a long term treatment the risk of addiction will automatically rule it out though.
The 'better' muscle relaxant options that are recommended as the standards for in MS treatment like Baclofen did work on my back and my legs. However while it did that quite effectvely it closed my bowel down, I don't mean it constipated me, which is what both I and my doctors thought at the time, I mean closed it down entirely! 38 sachets of Movacol, who knows how many Senna tablets and it took 19 days to go! (Rab gets that a bit muddled up and says it was 19 sachets and a few of weeks) By day 14 though I had to stop eating and almost everytime I drank something I threw most of it back up within 15 mins. The reason it happened is pretty simple really, It is a powerful muscle relaxant! It has its plus points it isn't addictive and it will still work regardless of how long you take it. What some of those who misadvised me first with the dosage and then the advice to 'just stick with it' seemed to forget was the Muscle Relaxant bit! The body has many muscles, the ones in my Arms, Back and Legs that my MS is pretty badly affecting and they are important ones and anyone who has pulled one anyone of them will know how painful they can get! They are powerful muscle groups but in terms of their importance in the funtioning of a human body they are by no means the most useful muscles or important ones your body has, The Heart and your Bowel are ones you really don't want relaxing! Sadly muscle relaxants don't pick and choose which ones they work on! The other one which that was prescribed, I only ever took one of because of the reaction I had to it, perhaps the head spinning, heart racing, out of my face feeling, nausea and the six or eight hours of memory loss it caused is the reason I can't even recall the name of that drug!
So I am thinking that there really won't be any answer to my MS pain. I started writing this last night and still have not slept, I have been posting elsewhere on the net and I got up and put a couple of dvds on. Spent some time talking to my wee man who is back to school today and who we won't see till after school tomorrow as he is off to respite today. I've took my 4th morphine tablet while watching breakfast news and admit to having an unkind thought when the 'Care Not Killing' representative was discussing the Director of Public Prosecutions new cop out guidelines in the aftermath of the Debbie Purdy case! So those assisting a suicide of a relative will be unlikely to be prosecuted unless they benefit finiancially! mmm interesting point, what will be considered as a qualifying financial benefit I wonder? Now I sit and await the council to see if they will prove me wrong and give me a bathroom with a loo I can actually use! Not going to hold my breath though because as bad as the pain is I don't want to die, well not this day anyway! That's the Klingon in me!
Today is not a good day to die!
(and there was me telling someone the other night I couldn't write anymore as I had lost the words and I haven't shut up all weekend since then pmsl!)
Cath x
Over the last week I have been on what they call MSG Morphine 10mg 2 x 12 hourly. It is a slow release form of the drug, in theory should be in my system working constantly but if being in as much pain if not more than I was before, sleeping less than I was before (and what would you know I do still function on less than my usual 3 or 4 hours a night!) is classed as 'working' as suppose it could be hailed a success!
When talking to my GP on the phone on Friday she told me to keep taking it and maybe when I start to take the anti deppressants I am due to start tomorrow the Morphine might start working! Wondering how that will work? Will I still be in pain but just not care that I am?
I am depressed there isn't any doubt about that, I was the one that told them I am depressed! Having only been able to leave this house less than 40 times since September 10th last year and over half of those outings have involved visits to my Dentist or hospital! That and not being able to use my toilet or bathe and wash properly since then how could I not be depressed? When friends or people visit I'm not depressed, I am still in pain but I am cheery!
My shower room and adapted toilet is supposed to start going in tomorrow, though given the visits from the 3 lovely workmen who came out last week all scratching their heads at what they have been told is to get done and how that differs from what I was told and shown years ago and what even they can clearly see needs to be done it really isn't looking good that it is going to happen! Knowing Falkirk council and the bureaucracy that prevails throughout not only theirs but every other local government organization in the UK and perhaps the world? I can even see this stopping the installation of the ramp thats supposed to be going in within the next 3 weeks!
Have I really, really got that cynical? How did that happen?
Hubby yesterday got so fed up with my being in pain that he did what he thought was best and phoned the NHS 24, spoke to a Doctor who agreed that I should not be and shouldn't have to be in pain until I go to the pain clinic in November and gave me a prescription for, wait for it, more bleeding Morphine! Not your slow release stuff just plain old useless Morphine, 10mg tablets 4 x a day! I am to take them on top of the slow release ones (my GP is going to love that) and they will help, the doctor suggested that I could get a higher dose of the MSG until the pain clinic. (I just know what my own GP is going to think of that idea!)
I have only taken the third of the 12 pills that Rab got yesterday about an hour ago and at no time has my pain level reduced and it has taken a lot of coaxing just to get me to take those! Partly because I KNOW they are not going to work but also because (and this is the bit that scares me) I also know this crap is highly addictive! Am I going to end up being an addict to a drug that doesn't even work?
I guarantee you that if you could see me right now at no time would you think I have had 30mg of Morphine today! (remember 10mg of that lasts till 12am tonight!) My pupils are still normal and reactive, I am not sleepy or drowsy (if only! because I am shattered) I don't feel sick and can still go to the loo, you may think my puntuation and grammer is a little shoddy but let me assure you it is always like that, not through reduced mental capacity though! (it's just sheer laziness on my part! lol) It's ok though you wouldn't be alone because a hospital Doctor I saw once went to give me 10mg of IV morphine not realising I'd already had 10mg an hour and a half before he had spent 30 mins talking to me and I had got up and walked to the loo and back to get him his urine sample. I think I taught a Doctor that day! That really reading and not just skimming notes was so the way to go! (see there is good that comes from MS pain!)
I just wish to hell I could get my head around a way to cope with this kind of level of pain, it is nerve pain, muscular pain, spasm pain and even skeletal/joint pain! So there isn't a magic bullet of a drug out there thats going to work. I already knew that, I always have! So now there are some really difficult decisions coming up.
Most of what the pain clinic is going to offer me are going to be long term drug options and a lot of those come at a cost. Gabapentin/Neurontin if your American is a drug that I know will hit the nerve pain on its head like a sledgehammer but for me the price of that will be my eyesight! Two years ago an Ophamologist was willing to register me as practically blind. Suddenly having to stop taking the drug due to an unplanned pregnancy which sadly was not meant to be,
and within weeks it was clear the reason I could not see was nothing to do with my MS!
Then there is the spasms/muscle pain, Diazepam a drug that I do tollerate well is a short term use only drug because it is one that is not only addictive but one that is tolerance building drug which means that there would come a time that the 5mg doses that I have taken on and off over the last 3 months would eventually require increasing doses to still be effective. On the plus side for me is of the 7 day 4 x daily Diazepam courses that I have been prescribed, I have only ever took them as and when required so I don't think there was a week where I'd actually used them all. I do know that as a long term treatment the risk of addiction will automatically rule it out though.
The 'better' muscle relaxant options that are recommended as the standards for in MS treatment like Baclofen did work on my back and my legs. However while it did that quite effectvely it closed my bowel down, I don't mean it constipated me, which is what both I and my doctors thought at the time, I mean closed it down entirely! 38 sachets of Movacol, who knows how many Senna tablets and it took 19 days to go! (Rab gets that a bit muddled up and says it was 19 sachets and a few of weeks) By day 14 though I had to stop eating and almost everytime I drank something I threw most of it back up within 15 mins. The reason it happened is pretty simple really, It is a powerful muscle relaxant! It has its plus points it isn't addictive and it will still work regardless of how long you take it. What some of those who misadvised me first with the dosage and then the advice to 'just stick with it' seemed to forget was the Muscle Relaxant bit! The body has many muscles, the ones in my Arms, Back and Legs that my MS is pretty badly affecting and they are important ones and anyone who has pulled one anyone of them will know how painful they can get! They are powerful muscle groups but in terms of their importance in the funtioning of a human body they are by no means the most useful muscles or important ones your body has, The Heart and your Bowel are ones you really don't want relaxing! Sadly muscle relaxants don't pick and choose which ones they work on! The other one which that was prescribed, I only ever took one of because of the reaction I had to it, perhaps the head spinning, heart racing, out of my face feeling, nausea and the six or eight hours of memory loss it caused is the reason I can't even recall the name of that drug!
So I am thinking that there really won't be any answer to my MS pain. I started writing this last night and still have not slept, I have been posting elsewhere on the net and I got up and put a couple of dvds on. Spent some time talking to my wee man who is back to school today and who we won't see till after school tomorrow as he is off to respite today. I've took my 4th morphine tablet while watching breakfast news and admit to having an unkind thought when the 'Care Not Killing' representative was discussing the Director of Public Prosecutions new cop out guidelines in the aftermath of the Debbie Purdy case! So those assisting a suicide of a relative will be unlikely to be prosecuted unless they benefit finiancially! mmm interesting point, what will be considered as a qualifying financial benefit I wonder? Now I sit and await the council to see if they will prove me wrong and give me a bathroom with a loo I can actually use! Not going to hold my breath though because as bad as the pain is I don't want to die, well not this day anyway! That's the Klingon in me!
Today is not a good day to die!
(and there was me telling someone the other night I couldn't write anymore as I had lost the words and I haven't shut up all weekend since then pmsl!)
Cath x
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