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
Two Rooms Plus Utilities 