Withdrawal or Overdose

I have now for years always taken my final medication for the day at 7pm, I started taking it at that time as I was up daily at 4:30 am for work so it fitted well into the required cycle. 7pm is also the time that I always switch mentally from daytime mode to night time, I pour out my glass of coke and replace the contents of my glass with a well deserved Gin and Tonic. Well deserved then as I would have been working from 5am almost to 7pm, and now as I have got through another day of this illness, well that’s what I tell myself anyway. My routine has changed dramatically and as you know I have been finding staying awake in the evening really hard. My thinking was that if I moves my dose of Amitriptyline and MST from 7 to 8 I might be more able to stay awake to 9 rather than sloping off to bed at 8o’clock as I did yet again on Monday. Amitriptyline on it’s own makes you drowsy along with the Gin it should make you even more drowsy, but after 11yrs of this routine I know all to well that had never happened, but I wanted to try delaying my Amitriptyline and MST to 8pm in the hope I could then stay and be more awake through to 9pm. It sounded like a good plan to me, and to make it work I had moved my morning MST to 8:30am in preparation for the change, but there was one thing I missed out and that was my memory, yes I forgot to take it at 8pm, but I was awake at 9pm and I was more mentally awake as well, although ready for bed, so that was where I went.

So far so good, but I hadn’t been in bed for more than 5 minutes when I started to feel really terrible, it hadn’t taken long for my body to go full steam ahead in showing me what happens if you miss a dose of both of them. I guess I hadn’t noticed the slow build up when I was sat in the living room as TV and conversation had been enough to mask the mild starting affects, I got up and headed to the kitchen for both, expecting that it would take about 20 mins at most for them to kick in, which I thought shouldn’t be that bad, wrong. It actually took about half an hour to kick-in, during which I had growing symptoms of withdrawal. It’s hard to explain but my entire body felt as through my skin was on fire, not the isolated areas I often have, this was everywhere. Worst of all was the fire in my lungs and chest area right up to my neck and down my arms to my elbows. I was cold and clammy and I could feel my heart pounding, at the worst part I found myself sitting up on the edge of my bed actually trying hard to pull information from my mind as I was then doubting myself, had I actually taken them earlier? Had I just taken a second dose? Which would have been incredibly dangerous, as I am taking 60mg of MST twice a day, 60mg once is enough to kill some people so a second tablet within one or two hours could be a little dangerous to say the least. My mind was racing as to what I should do. Could I be sure I had taken a second one or was this still the withdrawal? If I had taken 2 how long would it take for me to feel it for sure? What would I feel? I normally feel nothing at all when I take them, other than less pain, so what was I looking for? How bad are withdrawal symptoms? How long does it take for my medication to take any actions 20, 30, 40 minutes? Surly not that long? To call it a mild panic would be close to accurate, the problem was I just didn’t know how I should feel and what to do if I had taken a second, so I did the only thing I could think of, I lay back down and I waited. I couldn’t for some reason lie on my back where I always sleep, lying on my side seemed to make the symptoms more bearable, then suddenly and I do mean suddenly I felt normal, pain gone, shivers gone, absolutely exhausted, so I rolled onto my back and went to sleep in seconds.

I still can’t tell you exactly how long it took to go from taking my meds to normality but I would guess at about 35 minutes, believe me it is not something I want to do again. It is as thought I am totally incapable of making any change to anything any longer. This isn’t the first time I have tired to shift things and failed, it is the first time that I felt so terrible and I am guessing that had more to do with my MST than my Amitriptyline. I appear to be totally unable to move to new routines, my life has been so set as it is for such a long time that I guess a lot of people wouldn’t be able to make a change just like that. I know that I have made it slightly harder for myself because everything is set out in little bundles, points in the day where I do several things together. I did my usual things at 7pm apart from taking two of my meds, but therefore in my brain I had ticked off 7pm as done. It was no surprise then that I didn’t remember to do the missing step at 8pm, as I didn’t have anything missing. Questioning if the way I felt was due to either withdrawal or overdose was a real quandary, luckily I made the right decision, but it could have been very different.

I know some of you will be thinking that there is an easy answer to this, just get one of those boxes that you set your daily medications out in sections for each period in the day, the problem with those is that some of my medication is in liquid form. I do have one of those already and I did try using little counters that I moved as a symbol for the liquid meds, not actually swallowing them meant sometimes I didn’t move them even though I had taken the medication, the other problem was that who ever makes the boxes had missed one other possibility and that was that you need to take handfuls of meds, not two or three tiny ones, horse-pills don’t fit into the boxes. If you have been lucky enough to have spent your life without your own personal pharmacy in your home, will think this is really not a problem and I’m making a molehill into a mountain, if you still think that all I can say is please read the first three paragraphs again, it is a real issue for an awful large number of people. Unlike last nights experience for me, many have made the wrong decision and well they aren’t here any longer.

Medication and how and when you take it is a problem for far too many, short of having someone else responsible for making sure you take what you should when you should, there is no way of not having to worry about it ever. I don’t think it is fair to move the quandary onto Adams shoulders, you don’t have to have a bad memory to make mistakes, as they say to “err is human”, something we all are.

A plan from the day after

I suppose we all do it, go to the Doctor and hear what ever it is they want to tell us, then go home saying well that’s OK. We then proceed to build up a ring of OK around ourselves, luckily I spotted it yesterday afternoon while I was trying to sleep. That in itself told me it wasn’t OK, I COULDN’T SLEEP. I lay there and thought though everything that the Doctor said and what it implied, that was the bit I had missed, what it implied. I am going to spend the rest of my life with at the very least this level of pain, if not more. The drug that is holding the pain where it is, is my MST, for those that don’t know it is an opiate and like all opiates your body builds up a resistance to it over time and all they can do is lift the levels you take daily, but there is a limit to what they can give you without killing you. In other words they will only be able to control the pain as long as my body doesn’t build up a resistance to quickly. The very reason why when my medication was changed from oxycontin to MST I didn’t settle for the direct replacement levels. The matching dose was 70mg, but being a different compound it lifted the actual quantity of the opiate, so I worked and brought it down to just 60mg. It meant I had to put up with a bit more pain but my mind was clearer and I was also lengthening the time that I have with reasonable control.

Everything with MS seems to be a balancing act, trying to walk along that tight rope without falling off and accepting there are payoffs all the way. There are no cures, no magical drugs that will take away the pain totally and the best that a doctor can offer are options, you have to make that final decision yourself as to what you can live with. Just as yesterday yes I was offered other drugs but even the Dr himself said if he was me he wouldn’t change them, the fact my body reacts only positively to what I take and I know they are helping means they are probably the best option. I have to agree, if the other drugs had a guarantee with them that they would work better then I of course would take that few tough weeks while the change over took place.

So I know have it spelled out again and confirmed again, that the NHS can really do no more for me. I have heard that now for the last seven or eight years, there is nothing more we can do sorry. I have thought through the possibility of going to see my Nuro again, but I can really see no point, it will just be another day that screws me up for days after. Another horrid day of stair climbers and being trapped in a place I don’t want to be. Another day of going over word for word, what I have said to so many other Doctors. Another day of watching them nod their heads, make understanding sounds and then at the best have them try to palm me off on someone else, just as yesterday was. That was what happened on my last trip to see him, he sent me to two other department who dragged me through repeats of every other visit and at the end said, “I’m sorry we can do nothing to help you”.

So what am I going to do. I don’t have a plan if you like, it’s not clear in my head step by step, but what am thinking of is to step up my reading and my research. When or if I find something that I think may help, I will then talk to my GP first to get his input, hopefully he will be happy to go along with it, without a trip to the Nuro. I have read a lot clearly over the years and have tried several times to do that with my Nuro and on each occasion he just smirked said no and gave his reason. I think I might have more chance with my GP, but it is 100% clear to me now that the NHS won’t volunteer any help or hope so I have to.

I spent 20yrs fighting with them to get my diagnosis, just to land up fighting with them to have a better quality of life. It doesn’t sound much to want to live with less pain but still able to live a life, but it seems that is a future I am not being permitted to have, not by them being cruel, but because they have nothing more to offer me. I used to believe that all you had to do when you were ill was to go to the doctor and collect a prescription, oh how wrong I was.

Stranded

Well the fog goes on and now the pain is rising as well, it looks like it is going to be one of those weeks. As yesterday drew to what should have been the relaxing end thing started going wrong, my left leg didn’t seem at that time much worse than usual but by 7:30 when I closed down my PC and went to sit beside Adam for the rest of the evening, the lower half was agony. I had taken my MST and other meds at 6:30, so I should have been fine but clearly I wasn’t. Each time I got up it was worse and by 9:00 even sitting was difficult and painful to do. I went to bed just after the News ended, pain makes you tireder it just wares you down minute by minute, but on the flip-side sleeping is impossible, you have to be exhausted before it is possible, I have learned over the years that there is this point when no matter how bad the pain is, you sleep. I have also learned that trying to sleep before that point is reached, is impossible, there is no point just lying there in agony. Finally the balance point was reached and I went to bed, within minutes I was asleep despite the pain. This should have been the end of it and I should have slept, letting the leg rest, hopefully waking well not refreshed and not pain free, but back to the level I can live with it.

I was up at 1am, I woke with such pain that I didn’t know at first how to get out of bed, I tried to roll myself think I could swing my legs then and get up, it didn’t happen, I couldn’t get onto my right side, I twisted my body, still with my back on the bed and pushed my top half upright, from there it was easy. I tried again and made it to standing, headed to the loo and then into the kitchen I didn’t care what the Doctor wanted me to do with reducing my MST I took another 10mg, sat in the living-room and had a couple of cigarets, while I waited for it to take over. Adam fetched my walking stick as I knew the pain was still bad enough to stop my walking with any ease. I find my stick is a mixed blessing as it lets me take the pressure of my leg, but the price is pain in my shoulder. I slept the rest of the night but I woke ahead of the alarm at 7am, my left leg again was painful but about equal to the right, so not as bad as earlier, I was still tired and thought I would roll to my side and snooze until the alarm went off, I couldn’t roll to my left side, I just couldn’t do it, there was no strength there with which to manage its. I couldn’t reach with my right arm the headboard with which I thought I could accomplish the task and I couldn’t do that either. At that point if I had managed I wouldn’t have slept how was I stuck on my back again unable to do anything about it with any ease or elegance.

Clearly I did it, but the fact I had been stuck in my bed twice in 6 hours is running around in my head. I am trying hard to work out which muscles you use to accomplish the action of getting out of bed and which were the ones that aren’t obeying me. I’ve known for the last couple of months that the slope is downwards only between the ongoing incontinence, the increased pain and the more frequent fog, well mist until yesterday, that I’m not doing well, getting stuck with a simple thing like getting out of bed, wasn’t on my possibility list. How long before I can’t get off my chair or the settee, yes I have had more problems doing those as well. Mobility is one thing, being stranded is another. I guess I have a lot of thinking to do and considering what the next step is, I really have to make more notes as to what and when I am stuck and what I might need to help me. As you will know by now I don’t jump into change with ease, I always need time to plan, to be at settled with the thought and solution. So here goes, the start of a plan for a quickly arriving future.

Update, views and affirmations

A new week and I hope a better one! I ate very little yesterday as I wanted to rest my stomach, but I am going back to normal today. Despite the trauma of Saturday night I am glad to say that the MST and I are now making friends, it’s taken a little time but friendships are rarely instant. I am now on my 3rd 12 hrs on 70mg and I no longer feel doped or bad pain, there is always some pain and I think it is unrealistic to expect total pain free results from any drug, after all show me the person who doesn’t have mild aches and pains.

The past 24hrs has once again proved to me that what I believe about getting to know your illness is essential to being able to live with it and move on with life. To me life with MS isn’t life with MS, it is just life, I know my MS and I know the difference to being ill on top of it. I felt the same on Saturday night as you would if you suddenly started vomiting, to try and explain this is a little hard as my view of healthy is skewed, actually that is the simplest way, I now simply see the daily effects of MS as healthy, so anything on top is ill. I guess that sounds a little nuts, but you have to remember my life is a little nuts. I was so drained last night that I had planned to go to bed really early but then pushed on an extra hour for two reasons, I didn’t feel I had seen Adam really this weekend and I had made the fatal mistake of watching a film, I have to say that is one of the things I don’t like with films, they are too long. A one hour program disrupts a short period of time a film disrupts everything, any way I made it to bed at 9:00 but even sleeping to the alarm today, I am still tireder than I should be so it may well be another short day.

How we view illness I think really is the truth behind how we deal with it. If you are a person who believes that you are dieing when you have a cold, I think you will be a person who will find it harder to adapt to a life of illness with independence. I never let illness stop me unless it was beyond my control, the only illness that stopped me as a child was Glandular Fever and as an adult Pneumonia, off hand other than the odd days of dealing with food poisoning and so on, I have kept going, working through it and on. Since MS got me, it has been a psychological adjustment at each stage that has hit me hardest rather than the physical ones, physically I have always pushed through, mentally it has taken longer.

On the flip side those who crave nursing when they have a minor bug, I think, are the ones who at first will feel far more than I did, that they have hit the end of everything. They are the ones I have met who have a need for some reason to tell everyone about their illness, at every turn, holding it up as a flag to the world saying be kind to me, I’m ill. Like the woman I met at the MS society meetings, who had to have it worse then others, and who claimed she couldn’t possibly work as MS wouldn’t let them. I am in no way putting these people down, I really believe they psychologically have no choice in their behavior and feelings, they are as honest about their illness as I am, the difference is I am preconditioned to keep going, just as they are to stop and need help. Truthfully I feel so sorry for them as they are missing so much, but I am not sure how to reach them and show them that any Chronic illness isn’t the end, until the end finally comes.

I find I am writing for more and more reasons, the more people that I meet who are going through their own personal fight with a huge range of illness, the more I feel I have to keep giving a voice not just to me but to them as well, not all have the ability to write for themselves and not all the health to. Around the world there are voices that aren’t heard or listened to, voices like mine, trying to find out what now and what next, what does something feel like, is it me is it my illness, am I going mad or is this to be expected. I can’t talk for all of them as I don’t luckily have all the illnesses, so I talk for me and I hope they find and echo of themselves. If you found yourself with something happening to you, something that is taking away the normality we all prize, then where do you turn and who will tell you the truth. That is all I can promise all those voices, I will tell the truth, where ever that take me and I will continue to shout at all who will listen.

More than just break through

Sometimes when I start my daily post, I find myself sitting for a few seconds searching for the first sentence, the line to start my writing from. I didn’t find today’s hard so much as predictable, so I changed it. That doesn’t mean I’m not continuing the truth of my illness and my life, it was because I was trying to avoid once again starting with the subject of pain. I am sure if the pain is getting me down it may well be doing the same to some of you who read regularly.

We all have pain in our lives it is the unavoidable fact that go with being human, whether it is from small to major accidents, illness of just the simple headache and aches and pain, we can’t avoid it. The problem is all those things generally are short lived and extremely controllable with medication, why is that a problem? Simple it means we grow up in the belief that when pain appears, it can also be removed quickly and simply, there appears to be no reason for anyone to have to live with pain. That is as much a myth as that by a quick visit to the Dr when ill, you will walk away with a wonder drug as everything can be cured. I never imagined in my late teens and into my 20’s that pain could be like this, that every minute of everyday, pain eating away at me constantly. That there isn’t a pill to take, that will remove it entirely, yet here I am throwing pills down my throat with limited effect.

Yesterday morning I was hopeful that the 60mg dose would be enough even though I had a higher pain level, I thought that I would just have to let my body settle to the new drug and as the nurse suggested that I boost it with a few paracetamol tablets. Last night I realised I was kidding myself, I was sat watching TV not knowing how to sit, what position, where to put my arms and legs or how to reach for a glass, every muscle was screaming at me, feeling as though I had pushed their strength to there limit and more, pulling and damaging every fiber of them. I had taken my MST and the paracetamol and eventually I dived into a G&T as well. All I was waiting for was the point were I couldn’t stay awake, that was my only goal, sleep and escape, with a hope that said I would wake feeling better.

The morning brought no difference, I again took both medications and I again waited in hope for relief, the doped feeling of yesterday had actually improved, it was slight, but the pain wasn’t and I was clearly facing another day of hell. I took another 10mg of MST. Now, well now I am sitting here trying to distract myself from the milder, but still very much there pain, the sharper edge seems milder and the doped feeling isn’t actually as bad as yesterday. I don’t know now if this drug is working for me, but the other choice wasn’t a slow release, I would have to take tablets every 4 hours and that would possibly mean disturbed sleep, my only escape. I just don’t understand why the MST isn’t working and I am now wondering if I am absorbing it properly, but I must be getting something or I wouldn’t feel doped. I know it is just a matter of time and experimentation, once it is right I will be OK again, I just wish I didn’t have to go through the getting there bit!

Sorry for sounding so down today on the whole process, but it is only the process that is making me feel and sound this way. Everything else is how it normally is and I know I will as always find my way through this hiccup.