Third time lucky?

Yesterday continued in the same form as where I left my post, everything aching and spasms firing at random around my body, the best thing I could say about the first half of Saturday was that it ended and moved on. When I say it ended all that ended was the actual hours and thankfully the incontinence, a few hours of sitting still and not letting my stomach muscles be pulled around by standing up, had settled it. I am not always that lucky but it has happened before, more a case of letting the bowel rest and solidify to a point that standing up isn’t a horror show in slow motion. I did some checking back on my blog yesterday and was surprised to find that it is almost two years to the day that I was having all this investigated for what was the second time and just like the first, they found nothing and put it all down to my MS, at least that time I didn’t land up with a tube stuck down my nose just to get nutrition into me. I remember last time that I was terrified to ask for help, as all I saw ahead of me with a repeat of the time before and that was something I just didn’t want to go through again. So this makes it the third time that I have found myself unable to eat due the fact that it makes me feel sick and causes me to feel so ill that all I can do is go to bed, something that didn’t go well with still working in an office. The first time round I was so worried about loosing my job, that I just stopped eating around my work hours, but it just got worse and worse. Eventually my weight feel to just 7 stone, I was in danger and there was only one answer the medics had was a gastric nasal tube, I was stuck with that tube for three years.

The bout two years ago, didn’t get that far, but as I haven’t eaten what I would call properly since the first round, well it is somewhat hard to know these days what normal is. Although my eating never settled down my bowels settled to a liveable point, but I have never since then actually been able to hold on to wind, it was an embarrassing side effect I suppose is the best way to describe it. Just like I have noticed with a lot of old people, every step I took meant a small amount of wind passing, I have to say I was glad that I didn’t move about much and for the first time I was actually slightly pleased that Adam and I no longer sleep in the same room, as lying down was the second and even more productive position. The other legacy from the second bout was I have been totally unable to open my bowels without first taking laxatives, my memory made it a somewhat hap hazard process, but I tried to take them at least once a week although on occasions it was more like fortnightly. It was about 4 months ago when it started to go astray, the first thing I actually noticed was that I was no longer passing wind, I racked my brain, trying to remember the last time I did, but I couldn’t, neither could I remember the last time I had been to the loo, but I was sure that it was more than two weeks, so I took some laxatives and the rest is history as they say. That means that I have now had 10 years of not being able to eat a normal meal without suffering big style afterwards and just eating what I can when I can. I was actually quite pleased with myself as things were going well, then suddenly I am here back at stage one, so what do I do now? Eating has two possible dangers these days, it either gets stuck in my throat and I choke on it, something I am quite used to, but still makes Adam almost jump to his feet every time he hears it, or I start to feel ill. On bad days, I feel ill just at the thought of eating, then all I can do is wait for it to past, looking at food whilst wanting to throw up, isn’t really a good feeling that makes you want to tuck in and enjoy, one or two meals don’t matter, it hasn’t been uncommon for me to not eat at all for a couple of days because of it, then once settled, everything goes back to normal.

When I first managed to get rid of the tube I was quite glad to see my weight going up just a bit, after three years of being on the tube my weight did rise back up to 9 and a half stone and I was happy to accept that as it wasn’t too bad. I know that being housebound was the trigger to my getting off the tube, but it was bad timing in many ways as becoming almost totally immobile, even the small amounts I was eating put the weight on and on, I actually hit 13 and three quarters stone, where it stopped, I had hit a plateau and I was hugely relieved. I tried and tried to loose weight but nothing, when it all went wrong two years ago, I dropped 10lbs, but as it settled so did my weight back up to where it had been before. I stood on the scales on Friday when I had my shower and I have once more fallen, this time I was down at 12 and a half, I knew from my clothes that it had fallen, I just didn’t think it was quite so far.

On the first bout of this my bowels were a back ground issue, I didn’t actually myself put the two things together, but they did an endoscopy so it was clearly in the medics minds, they found nothing. I wasn’t surprised by that in anyway as at the time I wasn’t having pain or even the pressure/discomfort that was around the second time and even then I thought it was something to do with what later turned out to be my diaphragm going into spasm. This time it was the first symptom, maybe because I now knew what my diaphragm spasm feel like and are doing along with there friends higher up, in fact to be honest I did at first think the lower band was being triggered by chest, as they are so often there together, but now I don’t think so. The eye opener was that horrific pain I had on Thursday, it was in the exact same place, not a centimetre either side, just exactly where the daily pain and discomfort has been for months, the third line is my guts 100% sure. So what do I do now? Calling the doctor and telling him all this is only going to find me once more going to hospital appointments, appointments that will I am sure result in being patted on my head and told “Sorry dear it’s your MS”, I know that thank you, I don’t need to hear that again. What I do need is to hear that someone is going to do something about it, that someone is going to stop it causing me all this pain and that I will be able to move forward being able to eat. That I am not going to have to spend the rest of my life taking tablets every day, just so I can go to the loo once a week. That I am not going to find myself once more putting on a blue glove or walking around with a piece of kitchen towel folded up and held tightly between my buttocks. Is it too much to ask that I can just manage the normal basic functions of life, as in eating and going to the loo, without it being a total drama. Am I really asking too much?

Part of me is saying that this is something for the medics to sort out, as clearly I am out of my depth and things just aren’t getting better. Part of me is saying even louder, that I don’t want more test, I don’t want more doctors and nurses prodding at me, having to be told the whole story over and over again, for them to eventually pat themselves on their heads in pride as they tell me it’s my MS and sending me home to once more just get on with it, once again in the same mess that I was in before I went to see them, but in my case, a lot worse off as every trip out is a total killer. I know that half the issue is getting out of here, the whole palaver of ambulances, stair climbers, exhaustion, fatigue and feeling like death for days after, or worse still being put on some ward while they try to sort it out, at a rate of one test every two days, while they think and I climb the walls in frustration and boredom.

 

Please read my blog from 2 years ago today – 23/11/12 – The problem of progression

I am sure some of you may have picked up yesterday on what my thinking was, I needed to do a little more research and yes I wanted to talk to Adam about it, which we did last night. I am wondering rightly or wrongly if I am loosing control in my speech center. From what I know now….

What comes next

I knew this morning as I was making my porridge that I wasn’t going to be able to finish it, but I made it anyway just as I always do, by the time it was ready, I didn’t want to eat any of it. I sat here staring at a plate half filled with hot porridge and had to make myself eat every single mouthful, making yourself eat, as everyone knows is a hard thing to do, your body is screaming at you not to, you don’t need this and it isn’t welcome, but you eat each mouthful, fighting it down into your stomach, until the final warning comes and you have no choice but to stop. I had managed three-quarter’s of it, without enjoying any of it. I don’t understand what has triggered this appetite close down, but after more than a week of it, I now realise that it has no intentions of letting go of me. I thought a couple of days ago that it might just be my body reminding me that I hadn’t taken my weekly laxative, so I took it that night, as luck had it, it didn’t actually start to work until late on and didn’t complete until around 2 am, once again a disturbed night, but with a purpose this time and the expectation that I would feel more myself in the morning. I don’t, I feel really quite awful today.

I really don’t know what is going on all I know is there is something wrong with me and it has been building and building over the last few weeks. It all seems to go back to the day that I found myself totally unable to pass anything from my bowel, which as regular readers will know I have discussed with my GP, but he didn’t seem that concerned about it. From that day right through to today, everything I can think of has slowly been getting worse and I have been equally been feeling slowly worse as well. I have had days here and there where I thought that things were settling down, but they just don’t last and when they end I feel worse than I did before. I have no doubt that my MS is at the root of the issues with my bowels, it has been investigated in the recent past and nothing was found, other than the fact it just isn’t working as it should as the nerves aren’t stimulating anything any longer, not much of a surprise as it was something I had been telling them for months. I often wonder just how much doctors actually listen to what we are telling them, or if they just latch onto words here and there and miss the rest out. The result is that we go home and continue to get worse¬†because they just haven’t picked up on the clues that were there, before they become a major issue. It has left me wondering what I should do, do I call the doctor and say what, that I am feeling wrong, that I have no appetite and that my bowels are still not clearing, as after being woken twice last night, I still don’t feel it is clear. Do I mention again, the increase of the spasms in my rib cage that compress my lungs, or the fact I just want to sleep more and more? What bits are important, is the increase in my spasms in my arms and my legs, or the recent arrival of a new pain in my chest, one that takes my breath away and leaves me not sure of where it came from or why? It could be the nausea or the constant feeling of my diaphragm being tight and solid, or it could be the pains in my side and the increase of the bruising along the rib line under my right breast, or the series of neuralgia attacks in my brain. I could keep going listing and listing but I don’t have the slightest idea what is important and what’s not, as most of it, are just part of what it means to live in my body and nothing can be done about that, but for all I know what I call normal might just be the most important point and I am the one that has missed it.

That is always the problem when you live with chronic poor health and a list of already diagnosed conditions, everything becomes a mixed mist that finding your way through and spotting the true reason and the true symptom that is at fault, is almost impossible. It wouldn’t surprise me if those of us in my position are actually living with ticking time bomb that we don’t tell anyone about, just because we think that it part of what we should expect. It used to surprise me that so many of us with chronic illness didn’t just have one, we have a collection or a gang as I prefer to call them. When you think about it, it isn’t that surprising, as I bet like me they actually already had a gang before the main and most devastating of them was even thought of or found. For years I was sent to this doctor or that, some found nothing, others found something be it IBS, osteoarthritis, asthma or Fibro, the lists kept growing and I was just lucky when by chance they found my MS as they weren’t even looking for it. So most of us live with our own personal gang and the worst thing you can do is put yourself in the hands of the specialist as I did 2 years ago as they will find something new, like gallstones, something else I didn’t really need and had no idea where even there.

Clearly I used to be happy to put myself in the hands of the specialist as I used to have this strange belief that whatever they found they would be able to fix, the truth, the real truth is they can’t fix any of the conditions I have and I guess the majority of us have. I’m not so keen these days, surprisingly I really don’t need my gang to get any bigger, these days I would just rather not know as it achieves nothing other than more pressure to live with. Being told I have COPD did nothing for me, it just gave me another name tag and another source that I could partially blame for what was happening, but the main issues is as always my PRMS. After several weeks of feeling ill, not the ill I have lived my life with, but another ill on top, I am at a loss of what I can do next, or even who to turn to or do I even really want to. I don’t want to feel like this, but what are the real options and the real outcomes? I have several progressive conditions, I know what that means, but just like I was told years ago that there was nothing wrong with me, I know that whatever is happening now isn’t a progression, something is new is happening and it just doesn’t seem to want to settle down and leave me alone. I thought once, that once I had the final diagnosis, the biggie and the one that had made my life so difficult for such a long time that I would be fixed and free to live, the horrid truth is, it just keeps getting worse.

I am under no delusions of what my health means and where it is eventually going to end, but I’m not ready to be run over yet, all I want is to feel well, I can live happily with the pain and all the side effects of my illness and my medications, but it’s a fact I already eat very little, probably not enough for other parts of my health, I can’t afford to eat less, yet I am slowly losing the ability to not just eat more, but just to eat. I don’t want to wake up every morning feeling like I want to throw up, or wanting to eat and trying just to find that a tiny amount makes me again feel sick. It seems that no matter what I do in life, there is a line of fate that I found somewhere along the line that says “Nothing is every going to be easy, everything will be a battle, but you can’t just give in, so get up and deal with it.” For the first time, it is failing me as I just don’t know how to deal with it right now, I guess like everything else, the answer will appear.

 

Please read my blog from 2 years ago today – 29/10/12 – Bringing speech to mind

Yesterday reminded me that is a simple thing that would make most people angry can upset a lot more than my mood. The whole day was simply a spiral downwards of pain and memory problems. I had noticed over the last few weeks that my word memory when talking had been growing in its gaps, I have found…..