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.

I surrender

I am sure everyone has been where I am this morning, one of those many many point in life where all that keeps going round in your mind is ‘what did I do to deserve this’. That thought has been there since a little after midnight last night. I had stayed up late as Adam had gone to see his aging Aunt just outside Dundee, with his mother and sister, so I wanted to see him before I went to bed. At around 10 he arrived home and we chatted for about an hour, I had had a really good evening my pain at a comfortable reduced levels, in fact from around 2 o’clock yesterday things slowly improved, I decided to stick to the dose of 70mg of the MST when it came to my time to take my evening dose. I actually for the first time felt reasonably good, when I decided to go to bed, I did feel a little nauseous as I lay down, but it settled and slipped in to sleep.

At 1am I was up, I made it just to the bathroom and threw-up, that was the first of 4 emergency visits, all with the added problems of being a double incontinence. The final return of food amazed me as I was actually bringing back peppers, I ate them over 12hrs before for lunch? On top of that not at any stage last night did I have the normal acid taste and what returned look very much as it was when I ate it? I learned a little as well, my MS has played with my eating process for a long time, food sticking on the way down, and choking are normal, I discovered it all so does the same coming back up. I would say without doubt that the bacon I ate as a treat at 5:15 yesterday evening, along with the eggs and fried onion had something wrong with them, I would put money on the problem being the bacon. If things this week hadn’t been hellish enough I really didn’t need a stomach bug on top. I clearing everything up for the final time at and returning to bed at around 2:45, hoping that I could then sleep and rest the muscles in my legs that screamed at me every time I tried to launch myself on to them and when I allowed my weight to fall on them in haste once I arrived where it was safe to be sick.

This morning I still feel a bit icky, but I have eaten half a slice of dry bread and I have taken my tablets, as you would expect there wasn’t much sign of them dealing with the pain first thing or overnight, but sitting quietly here at my PC I think the worst is over, finger-crossed. My poor guts have been attacked in every fashion possible in the last few weeks, I think they really need a rest, today I am going to eat little and take great care in my selection of food. I haven’t taken my fluid meds as I would say I am a little dehydrated, fluids will be a friend today rather than an enemy. Although I know nausea is one of the possible side effects of MST, I truly believe this is food positioning not my meds. I am no stranger to nausea, through out all my treatment for MS I have had spells of it, most I expect are due to the mix of med, but absolutely none have made me actually throw-up, that’s why I am not jumping on the MST as the cause. I have a plain and simple case of food poisoning.

I suppose that will teach me to eat what isn’t good for me. I knew we had cooking bacon, basically the left over bits not pretty enough to sell at full price, I had spotted that there was amongst it, what I would call ‘Yorkshire Bacon’ really thick fatty slices. Not considered these days as good eating and I would have usually cut off the fat and diced it to use in various dishes, but I slow fried it along with some diced onion, a couple of mushrooms and topped it with 2 fried eggs, a splodge of tomato ketchup and old fashioned heaven on a plate, well almost a nice pigs kidney and some black pudding would have made it even better. The modern faddy eaters just don’t understand what they miss when they look at old fashion meals and turn their noses up at it.

Today is going to be a play it careful and rest day, once I stop feeling that little bit sick I will be happier, I don’t think anyone likes being sick and I am included firmly in the avoid it at all costs.

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.

Morphine control

If anyone out there is thinking about changing from Oxycontin to MST, don’t do it! Sorry but I am not myself today, I’m not sure who I am but it’s not me. Last night I went for the lower dose of 50 but the pain was too much to cope with so back to the 60 after 2 hours and 60 was the dose first thing this morning. It may sound a little nuts to you if you are not living your life on Morphine, but I am really not wanting to take one gram more than I need, as it really isn’t any way to live. This doped, not quite there, mess that is in my head makes me want as I did last night, to just go to my bed and cry, I don’t know were or why the tears want to be there, but they are so close to the surface that even my normally poor control has vanished. I suppose that’s all it is, just a case of heightening that inability to my control levels.

Morphine is a great controller of pain and there is no doubt about that, but there is a price to pay and it is not something to be swallowed without knowing and understanding the price. I know I am well addicted to it, if magically a cure appeared and my MS was gone, I would be a Morphine addict and getting off it would be hell. Morphine has been part of my life now for about 6yrs, the dose slowly going up and slowly I get more and more hooked. I am never going to be free of popping pills that change everything about my life. As long as I can manage to live with the pain and the tablets are holding it at a level that means I can operate, i.e. sit or walk, I don’t want to take anymore than that. Yes I am sure I could get rid of the pain, take a higher dose I might be able to be pain free, a really nice thought, but that would be the price, thought, would I have any or would I have the ability to act on them. I have seen the victims of Morphine, that dead eyed body that accepts without any thought what is around them, nothing there, nothing that shows any real life, I want to live as a person not a zombie.
So I will put up with some pain as a pay off to having some life, I know that it is only the first 48hrs, so judging it is wrong, but it isn’t any fun and I don’t find it funny.

The nurse arrived as expected this morning and took my blood and spent a few mins to just go over everything with me, she made it clear that she doesn’t agree with the Doctor that I should stop all the bowel meds, I have to say I am not convinced either. I simply haven’t had any control and the leaking is worse as there isn’t any proper clearing. We discussed different options but I am going to see how everything goes through the weekend then make the decision on my MST levels and how I am coping with all the changes. I found out that my Doctor is off for his summer holidays for three weeks so I really have to have to sort everything in the next 10 days, if I don’t have it right I will have to deal with the other Dr at the practice, or a locum, having to go over all of the story from the beginning, I really can do with out that.

My condition? Waiting AGAIN!

This is beginning to feel like a daily medical update. There is hopefully some good news following the Doctors visit yesterday but to me at this very second the best news is, I have no medical people in my home today!!! It just feels so good to be in a settled atmosphere, no tension of waiting around, feeling I can’t do anything as the doorbell might ring any moment, not that I really do anything, but even a shower is out until they had been and gone. Today just feels totally different.

I talked through all of what has been happening in the last few months and we are on all change footing at the moment. The Doctor confirmed what the nurse said the tablet fact having traveled right through intact to even the colour was clear Malabsorption, he agreed that that would be a perfect reason to my not having any control over my pain control. I had half expected that it would mean a change to injections but no. I’m not a chemist but apparently there are several different combinations that morphine can be administered in tablets form. It is highly possible that it is the combination the Oxycontin is that my body isn’t dissolving fully, so I am now on MST instead, this sounds simple but surprise, surprise it isn’t. It is impossible to say how much of the morphine has actually been getting into my system so we are playing with dosage at the moment. The reason Doctors prescribe Oxycontin is the combination of chemicals allow a lower level of Morphine, to have the same effect as doubling to pure morphine. The straight swap would mean I should be taking 90mg of MST and that is a lot of morphine. So we agreed that I will start on 30mg and I have 10 mg tabs as well, I can therefore work with it to get the right dosage for me. As I said before I have no desire to be flat out in my bed, but I don’t want too much pain either. This morning I took my first 30mg, one hour later I was in agony, there was not change to the pain level from before I took it. I dived in and I took another 30mg. That was 2 hour ago, I feel a bit doped but the pain is well under control, I think I could easily manage on 50mg, so I will try that tonight, I know the doctor wanted me to try the other way, going slowly upwards not high and coming down.

He as stopped all the bowel medications we have been trying to use to control them, he feel that all we may well be doing is aggravating the situation, but he isn’t sure what the problem is so I am going to have to go and see a Gastro Specialist at the hospital. A day out including people to get me there and back. The only thing that he said was, because of the pain I get, it may involve my Gall Bladder,but that could all be wrong, I need it all investigated. If it gets me body a little bit more controlled I will be happy. So I now wait for the letter to go to the hospital and everything else organised round it.

As for my leg, it is nothing more than what it always had been before, just fluid collecting due to my immobility, edema, more meds, doubling the dose of the fluid tabs to see if that shifts it, it might also help a little with the rest of my weight as well, fluid doesn’t only collect in your legs.

Tomorrow the District Nurse will be here again but luckily not with suppositories, they are going to do a full spectrum of blood tests, that will hopeful rule out some of the possibilities that could be behind my bowel problems, like my liver and kidneys. Then, well then I wait, wait for results, wait for appointments and wait for the right level of all my meds. I kind of feel that I have wasted the last few months and I am right back at the beginning. I also can’t help wondering what would have happened if we had continued on the path we were on, if I hadn’t found that tablet, what would have been the outcome?