I am

There is a strong desire today to not write, to simply post “I feel crap and I am going to bed”, but that isn’t what this is about, is it. To stay true I have to post daily, but there is no rule about length.

Just as I published yesterday’s post the MS Nurse arrived, she was here for about 45mins and she confirmed my thinking, I am either in a flare or everything has moved up a gear and I am once again on a faster slope, only time will tell and I am sticking on the positive side, this is a flare. We went thorough everything that has happened since Christmas and then the point a several weeks ago when I started going down. I have tried to pinpoint when it started snowballing and the first signs are right back at the point I had the nurses in and out of the house and them the Dr here, all things that upset my routine. As you all know I have been grumbling on here about the pain in my pelvic and legs, since then. Add in the mad pain in my back that didn’t fit to pulling a muscle, which like everyone else I had done before, the pains never matched and took too long to die down. I also spoke to her about the tightening of the tendons in the backs of my legs and how my left foot has dropped and the continual spasms that lock them up at times. She is going to talk to my GP and sort out a new spasm drug as clearly I need it, but that isn’t the major outcome, I have agreed to go to the new pain clinic at the Victoria hospital.

My GP had suggested it months ago but I wasn’t keen to go for several reasons, first being the getting there and back, but as unpleasant as it was in the stair climber, I know I can do it, so first one gone. The second problem is my image of what happens at a pain clinic and what I learned about them years ago. My knowledge came from a friend of mine who went there for several months for treatments and training in relaxation, I know how to do that and it helps a little at times and I don’t want to have to keep going back and forward wasting time for nothing, well it was for her nothing as the pain was worse not better when she stopped going. I have no faith or belief in acupuncture, psychologist, hypnosis or any of that stuff. I have tried things like tens and so on and none of those type things worked for me either. Sorry but I really am the type of person who has faith in one thing and one thing only drugs, there is a drug out there I am sure that will control my pain and bring it down again to a livable level. I will see when I get there I suppose but I am still not really convinced there is anything they can do. I was totally open with the nurse and she said that the image I have of pain clinics isn’t totally accurate. Yes they do do most of what I knew, but they also have access and better knowledge of drugs that could help me that my GP wouldn’t prescribe without a Consultant behind it, so on that basis I have agreed to go, the first person to mention anything else will be shot. I just don’t have that energy required for all that faffing about, and disrupting my routine making life harder not better. So the clock has started on that waiting point.

All that out of the way, today, as I said at the top I feel totally wiped and lacking in effort or effect, this has just taken over an hour to write and it is far from my best, I know that, but when you are fighting through brain fog, body concrete and pain through every movement, what do I expect. My desire to hibernate is growing daily, I would love to just escape right now as purpose is hard to find when you feel like this, I am sometimes reluctant to say on here things like the above as to some it may sound like I am ready to give up, I am far from that, but right now my body wants to coast and doesn’t seem to mind what that actually means. I find myself numbed to emotions, not meaning to sound down nor feeling it, time and everything else is just passing by me and over me and I go on. I could be anywhere as I am not effected by what is around me, I am, is all I can say about me. I am in pain, I am lost, I am drifting, I am silent inside, I am tired, I am sitting, I am numb, I am still ALIVE and strangely with all that I am STILL HAPPY. And now I am going to have a sleep.

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?

New Problem?

I ended my post yesterday in a rather hurried and odd fashion which I apologies for, I have to say though I spent the rest of yesterday in that odd place. All evening I was still trying to work out why suddenly I was feeling and using the word normal in connection with something that is clearly not normal in any ones life. I know that it may sound like a really odd thing to get hung up on but it says a lot about how I am physiologically adjusting to everything, even something as horrid as constant bowel leakage. I don’t know where the acceptance point is but this one made it’s self known, there is so much in my life that due to my health is wrong I guess that if I didn’t adjust and accept I would be driven made. Think about it, if I accepted none of it and reacted to every pain, spasms or twinge I would be a gibbering wreck, all that happened yesterday was I caught the actual point. I didn’t find it upsetting that I wrote that or anything like that, I was just stunned and became fixed on it, meaning I could write no more.

The nurses have been and gone this morning but something happened last night that has thrown a whole new light on what is happening with my bowels, it has also added doubt to it having anything to do with my MS and the possibility that is something totally separate. I had been to the loo just before I lite my last cigarette of the day, I stood up lifted my glass and headed for the kitchen before going to bed, as I reached the kitchen door I knew that I had just messed myself again, I put the glass on the counter and headed to the loo. I discovered that what I had passed contained a whole tablet, clearly there on the toilet paper, I could even tell from it’s size and colour that it was my 15 mg Oxycontin tablet. They are slow release tablets so they are meant to continue releasing their medicine as it travels through me, but not that slowly, or possibly quickly, I take two each day one in the morning at 8am and the other at 8pm, which ever it was it shouldn’t have been there. The nurse immediately said Malabsorption, the cause and the effects depend on what the cause is which it appears are extremely wide and varied. Yes I have done a quick lets look it up and scare the hell out of myself session and it didn’t scare the hell out of me, it just confused me more. I have to say I am glad the doctor will be here in the next couple of hours, leaving me no time to really think to much about it. It would explain the problems that I have had for the last few months when it comes to controlling my pain levels. If all my medication is going through to fast or not absorbed, well the result is pain for me regardless of the quantity that is going into me. despite that there is one big thing that doesn’t fit, I have been gaining weight totally uncontrollably for months now, all I read said the opposite should happen. I am not at all surprised by this, my body has always had a habit of inventing new things to put me through, finding another one, well that is my life.

What ever the Doctor thinks this is, I am clearly going to have to see another specialist and there lies another problem of getting me anywhere. I know there is no point spending to much time reading or worrying, the whole process of diagnosis of my MS taught me that, I just have to wait and go through the system in the way it works, there is no way of speeding things up or changing the process just for me, as they won’t. If my GP wants me to see a specialist it will be weeks to wait, then the organisation of getting there and back is a nightmare. In someways it might just be an idea for me to stay in hospital for a few days and let them pull me to bit, fix my teeth and give me the list of what to expect next. Just like yesterday I am totally numb about the thought of something else to deal with, something else to be fixed or not, it kind of feels expected and that word again ‘normal’.

I am on my way back.

I am behind on everything today as the visit from the Nurse took longer than I expected. She arrived slightly later than I expected and also had another nurse with her, the first surprise of the morning. I had already decided that I was going to be direct from the start and that I was not going to be pushed in to something I wasn’t happy with or had already been tried and failed. We spoke for quite a while as I took her thorough the whole story, right back to when I called for help from the Rehab team. She did seem to have arrived with an agenda but I had one too. She tried several times to jump over some of what I wanted to say but I wouldn’t let her. I explained how I felt about her coming here every second day and that it wasn’t about the actual treatment but, the start of having to have someone else assist with my daily care. She tried to reassure me that they would intrude on my life as little as possible, I answered that one and what I said seemed to be the light bulb moment for her, I told her the truth, she could be here for a second or the whole day, it was the fact that anyone was having to be here at all.

We talked a bit longer about the actual treatment she had brought with me and what it should do and how it should help, as to how or who is going to actually give me the treatment that is a little up in the air. She has given me the first treatment of a micro-enema, it is a small plastic tube with just 5mls of liquid. The effect hasn’t been much of a success, I lay on the bed and we chatted for a while, after about 10 mins I asked her if I should be feeling anything by that point, she looked at me and I knew I was going to give her the answer she didn’t want, I wasn’t feeling anything. I went to the loo with virtually no success, she said that for some people that was normal and that later there will be a total clearing of my bowel, so I am waiting. I have here all the stuff she brought me a bag of blue plastic gloves, a box of the enemas, and some gaze pads, when she calls in the morning we will discuss what happens next.

The plan is to use the enema every second day for a week then see what the effect is, I think because of how clear it is that I find this an upsetting process she was deliberately vague about whether she will be here to administer the next dose or if I am to try myself. I have to say though that having had the opportunity to actually talk over the whole subject I do feel a bit better, on Tuesday the nurse that was here had left me lying on my bed in tears and let herself out, today I saw them out and I wasn’t crying, I had control. It may sound a little odd, but just the fact that I let them in and I saw them out, made me far more comfortable, and is leaving me feeling more positive about the future process, what ever it is and who ever has to assist with it or not. That final act though has some how made a big difference, on Tuesday everything happened to me and I was left to get on with the residual damaged physiological punch that had be delivered. Today I am waiting, the normal patient condition but waiting with my dignity healing slightly but still bruised.