I was chatting on facebook with one of todays living poets last week about how haven't been able to write a shopping list, nevermind a short story or poem! I now know why. In a word Computer! This thing although back online is still knackered from what it was, not completely useless but not running on all thrusters! Hubby took this away to get 'fixed' and I picked up my pen and wrote! Okay wasn't the cheeriest poem I've ever written but the words flowed as easily as the ink did! I really love this pen. I still feel guilty buying it and not telling the lady in the charity shop it was worth a lot more than the £2.90 I paid for it. I feel so sorry that someone out there opened the present and thought 'whoopee A Bleeding Pen!' that they threw in with the old clothes and Lavender Bath Bomb. The person who bought this pen really loves/d the person they bought it for, obviously a lot more than the person got the gift knows! Perhaps it was the person that bought the gift was the one who handed it in. With good reason, just because I love pens doesn't mean they do. I think if that was the case though they would have said to the charity shop 'oh and there's a brand new boxed,never even tested Sheaffer fountain pen in there that cost me over £200!'
When I saw the pen I instantly fell in love with it. When I asked how much I expected £10-£15 (completely out of my budget!) it was probably best I was in a wheelchair when she said £2.90 or I'd probably have fell over. When I wheeled out the shop I already felt like a bank robber for paying just 3 quid for a pen I knew had cost at least £30/£40. I don't know if you can imagine how bad I felt when I found out how much it was on Sheaffer's website, just know that it had been in my bag for months untouched until some broadband thief got on my private network sending this new computer back to the stone age, where it will just have to stay till I can talk to Acer and find out how much the software I need will cost. So the internet is why I couldn't write. I'm going to have to switch off the computer more and pick up my new best pen a lot more I think.
Sunday 21 August 2011
Wednesday 16 February 2011
Billy
Catherine Godfrey
Hey! You looking for Billy?
I aint seen him in years
Yeah! I remember Billy
Tall and thin
Wi Sticky out ears
A bottle of Buckie
and a gram of speed
A box of matches
Was all he'd need
Bundles of paper
Set them alight
See Billy's face
See the Delight
They say that Billy
Could set fire to bricks
Only had to look
At two dry sticks
He told me once
About his first flame
How it all started
How she whispered his name
How he fell in love
With his very first fire
Tasted her smoke
With burning desire
Hypnotised by flames
That grew higher and higher
Told me how he just sat
Completely entranced
Watched as she burned
Watched as she danced
Told me of his excitement
How she drove him insane
And how he couldn't wait
To see her again
Factories or shops
It really didn't matter
Not to our Billy
First Class Firestarter
He set the school ablaze
Torched the youth club
There was even a rumour
That he'd fire bombed a pub
But the last I heard
He was homeless and broke
So if your looking for Billy
Just look for the smoke.
Hey! You looking for Billy?
I aint seen him in years
Yeah! I remember Billy
Tall and thin
Wi Sticky out ears
A bottle of Buckie
and a gram of speed
A box of matches
Was all he'd need
Bundles of paper
Set them alight
See Billy's face
See the Delight
They say that Billy
Could set fire to bricks
Only had to look
At two dry sticks
He told me once
About his first flame
How it all started
How she whispered his name
How he fell in love
With his very first fire
Tasted her smoke
With burning desire
Hypnotised by flames
That grew higher and higher
Told me how he just sat
Completely entranced
Watched as she burned
Watched as she danced
Told me of his excitement
How she drove him insane
And how he couldn't wait
To see her again
Factories or shops
It really didn't matter
Not to our Billy
First Class Firestarter
He set the school ablaze
Torched the youth club
There was even a rumour
That he'd fire bombed a pub
But the last I heard
He was homeless and broke
So if your looking for Billy
Just look for the smoke.
Curse
I have quite simply just not been able to,
Stop writing prose, It has been going on for days,
So why all the weird and wonderful words?
Put together in so many weird and most wonderful ways,
Poems about love and pain, or the world and you.
I have not written like this for many years,
Don't know why, all of a sudden I've got all lyrical,
So from where did the words come?
Some of them are sad, some are funny and satirical,
Poems to make you grin, or drive you to tears.
I have forgotten the rules of lyric and verse,
Can't put in this word or that one doesn't quite sit,
So will it all just suddenly end?
When I come upon a word that just doesn't fit,
Poems that rhyme,on my page perhaps it's a curse?
Cath Godfrey
Aug 5th 2006
Stop writing prose, It has been going on for days,
So why all the weird and wonderful words?
Put together in so many weird and most wonderful ways,
Poems about love and pain, or the world and you.
I have not written like this for many years,
Don't know why, all of a sudden I've got all lyrical,
So from where did the words come?
Some of them are sad, some are funny and satirical,
Poems to make you grin, or drive you to tears.
I have forgotten the rules of lyric and verse,
Can't put in this word or that one doesn't quite sit,
So will it all just suddenly end?
When I come upon a word that just doesn't fit,
Poems that rhyme,on my page perhaps it's a curse?
Cath Godfrey
Aug 5th 2006
Friday 11 February 2011
Billy ten years on
Hey, I've been thinking about you man, really quite a lot,
Wondering if you jumped out of the fire, back into the pot!
I watched them tear down a bit of my own private hell,
Didn't feel like I thought I would, not the way you would tell!
They tore a little part of your hell down too, you know,
Must have torn you up inside, no sparks, no orange glow!
I know how much you needed to see that place burn,
Let some of the scars inside and out, finally see the sun!
You dropped off the radar back in Two Thousand and Two,
I've wondered for years what the hell happened to you!
Your dad told you everything you did was stupid and wrong,
He was just a sad old git though looking in a mirror too long!
Wasn't sober long enough to look after himself never mind a son,
That monster was a lot of things Billy but a father was never one!
Dad's never brand their kids face with the buckles of belts,
Just as bad as the teachers who sent you home with those welts!
Then there was the track on which our nightmares both crashed,
My train of dark secrets getting me high, drinking to get smashed!
Your train of horrors so bad it needed to pick up some very high speed,
My train didn't run much when we met, yours? driven by pure need!
I miss our coal fireside nights they were cosy, safe and new,
That's a very exclusive club your in but that you already knew!
It's so strange that we know so much about each others pain,
Yet I never once asked you Billy, what was your last name?
I can't even remember who brought you to my party that night,
Only that you had a bottle of Mad Dog and weed so you were alright!
The rooms filled up, passed out mates like Alana and giant celtic teddy,
I started filling the black bags with cans, you cleaned the fire and got it ready!
Well gone five when we turfed the last Bernie and his bird out the door,
He'd his own place for what they wanted, across the road in the block of four!
Finally we both sat, lit the fire and thats when you started to really talk,
I just listened staring at the flames, the scars on your face, they started to talk!
I have hoped your life has changed for the better over the years,
That maybe the old sod had died and you were finally able to bury your fears!
You would have buried him too as to you he wasn't worth a single flame,
All that he did to you and still he made you think you were the one to blame!
You said you would take him in to the burning fires of hell and make him pay,
Some how though I don't think in your case mate that it gets to work that way!
Oh he will burn in hell all right for the rest of time for what he did to you,
Billy you won't get into hell. You get a room nearby with no more pain just a great fireside view!
Wondering if you jumped out of the fire, back into the pot!
I watched them tear down a bit of my own private hell,
Didn't feel like I thought I would, not the way you would tell!
They tore a little part of your hell down too, you know,
Must have torn you up inside, no sparks, no orange glow!
I know how much you needed to see that place burn,
Let some of the scars inside and out, finally see the sun!
You dropped off the radar back in Two Thousand and Two,
I've wondered for years what the hell happened to you!
Your dad told you everything you did was stupid and wrong,
He was just a sad old git though looking in a mirror too long!
Wasn't sober long enough to look after himself never mind a son,
That monster was a lot of things Billy but a father was never one!
Dad's never brand their kids face with the buckles of belts,
Just as bad as the teachers who sent you home with those welts!
Then there was the track on which our nightmares both crashed,
My train of dark secrets getting me high, drinking to get smashed!
Your train of horrors so bad it needed to pick up some very high speed,
My train didn't run much when we met, yours? driven by pure need!
I miss our coal fireside nights they were cosy, safe and new,
That's a very exclusive club your in but that you already knew!
It's so strange that we know so much about each others pain,
Yet I never once asked you Billy, what was your last name?
I can't even remember who brought you to my party that night,
Only that you had a bottle of Mad Dog and weed so you were alright!
The rooms filled up, passed out mates like Alana and giant celtic teddy,
I started filling the black bags with cans, you cleaned the fire and got it ready!
Well gone five when we turfed the last Bernie and his bird out the door,
He'd his own place for what they wanted, across the road in the block of four!
Finally we both sat, lit the fire and thats when you started to really talk,
I just listened staring at the flames, the scars on your face, they started to talk!
I have hoped your life has changed for the better over the years,
That maybe the old sod had died and you were finally able to bury your fears!
You would have buried him too as to you he wasn't worth a single flame,
All that he did to you and still he made you think you were the one to blame!
You said you would take him in to the burning fires of hell and make him pay,
Some how though I don't think in your case mate that it gets to work that way!
Oh he will burn in hell all right for the rest of time for what he did to you,
Billy you won't get into hell. You get a room nearby with no more pain just a great fireside view!
Wednesday 2 February 2011
Bad Weather
Today I am in a huge amount of pain, what else is new? I was fine until about 7pm last night which was when I was able to give the time the first of the rain would hit! It has been pouring down all day but the pain isn't getting much better because doesn't matter how much it has rained so far that was not my rain! I feel sorry for those who hate the rain but I really, really need it. Until it gets here I am being painfully squashed to death!
I suppose looking back it explains why I have loved storms since I was a young child, everytime I heard thunder I was always the first one at the window or out the door to stand in the rain, it always made me happy. Now rain makes my MS better.
It's not fun being a human Barometer!
Cath x
I suppose looking back it explains why I have loved storms since I was a young child, everytime I heard thunder I was always the first one at the window or out the door to stand in the rain, it always made me happy. Now rain makes my MS better.
It's not fun being a human Barometer!
Cath x
Wednesday 24 February 2010
I GIVE F**KING UP!
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
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
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
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