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I have dozens of unpublished blogs in here that go into huge detail as to why our Health Services in this part of Scotland are crap and why if you can afford it, you really need to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