Too ill for basic care

If there is one thing throughout my entire life I have hated, it is being proved wrong. I know it’s bigheaded to believe that you are always right, but when it comes to my own body, I thought I had, at least, one area of speciality that no one could argue with. I was daring to think that after 4 days of almost peace, where my pain levels had slowly begun to settle, that the bad spell, was on its way out. Last night, proved me wrong and it did it in style.

I had spent a very uncomfortable evening sat on the settee. Adam had to fetch me some of the antispasmodic the doctor prescribed for me just before 8 pm, as my stomach was tied in loops. I’m not really sure if they helped or not. Yes, the sharper edges of the pain was reduced, but they brought me no comfort what so ever. It is now my third time that I have tried them and compared to my worst spell, they worked miracles, but compared to me average, they did nothing. He has prescribed Buscopan, which is a very common drug for IBS, something I don’t have, according to the tests run by my consultant the last time that I saw him, despite the fact that I have all the symptoms. As always when I am unsure about the effects of a drug, I give it a quick Google, just to see what their effects are supposed to be. It was totally unhelpful, but I had to laugh at the final line in Wikipedias synopsis “It is also used to improve a death rattle at the end of life”. What on earth has that got to do with bowel and bladder problems? So many drugs seem to have some other odd usage, but at least, I laughed. What I did find out though has made me wonder if I should be taking it at all. Apparently, it shouldn’t be taken For “certain conditions when there is reduced bowel activity”, but it totally unhelpfully doesn’t say which ones.

By the time I went to bed at 9 pm, I was delighted to be there. Sleep had been dragging at me for what felt like forever. My stomach was in a mess, with pain showing up all over the place and there were area’s that felt as though they were being badly stretched. Experience was telling me that sleep was my only option for peace. Within seconds of lying down, I feel into a deep sleep. 11:30 pm found me awake, drenched in sweat and in pain, really bad pain. As I sat up, I knew I was going to be sick and that I had to move as fast as I could. I took a risk, a huge risk and left my wheelchair behind me, as it would do nothing but slow me down. As it turned out, it was a good decision. With a wrench, that came from somewhere around my waist, I started to bring up my last meal, eaten at 4 pm. Just as has happened in the past, as I was being sick at one end, urine was leaving me at the other and there was nothing I could do about it. I did what I could to tidy up, but my entire body was shaking, I felt terrible and I had used what little strength I had pushing myself to my feet. I had grabbed my dressing gown, which was lying over my wheelchair and had brought it with me, as I wrapped it around me, I sat on the loo to do two things, gather myself and to try and empty what remained in my bladder. It was after that, that I called out for Adam.

I had staggered my way to the bathroom door, fighting the pain with every step. As I reached it, there was Adam. The sudden vision of him standing there waiting for me, listening to me throwing up, started the shame meter. He sorted me out and took me in my wheelchair, which he had fetched long before I called, through to the kitchen for a cigarette and to give me some much-needed liquid. I sat in silence while he cleaned up the mess I made in the bathroom. Once again, I was in the horrid situation of knowing my husband was having to clear up my urine. If there is one thing on this planet that will strip you of all embarrassment, it’s shame, and I had it in buckets. It doesn’t matter how ill you are, whether or not it is out of your control, or any other fact you can think of, you still feel that shame. When Adam returned to the kitchen, I didn’t know how to look at him or what to say, other than “Sorry”. To make matters worse, as I put out my cigarette, I hurtled once more for the bathroom and doubled the amount I brought up and the mess he had just cleared.

This morning, I still feel terrible, but that’s not new. My bowels moved without pain or issue and the pain in my abdomen is still there, just as it was last night, last week and last month, but not at bad as it was last night. I don’t feel sick, but Adam and I have discussed it and are in agreement, I’m not going to eat today, just lots of liquid. I’m also going to put a large measuring jug that I have, into the cupboard in the bathroom. Hopefully, if this does happen again, I will be able to grab it, so I don’t leave myself feeling shame, just because I’ve been sick.

I don’t have a clue what else I can do, other than speaking to my doctor again on Monday. Whatever is happening down there in my stomach, is getting worse. When you are housebound, your options diminish dramatically. If I could get down those damned stairs, I freely admit that I would be now sitting in the emergency room at the hospital. I would be there, just so a doctor could check my abdomen to be sure there is nothing they can find that could be causing it. I would be there, not because I feel this is an emergency, but because it would put my mind at rest that I’m right. I can’t get down those stairs, so I’m stuck here. To get to hospital, I would have to call 999 for an ambulance, but I don’t believe that I need that type of attention. Doctors don’t come to your house these days, not for anything, not even when you can’t get to them. So I’m stuck, I can’t get that peace of mind, I just have to wait until I can speak to my GP and that’s not until Monday. Somehow, I doubt that even then, will I actually see him, or any other doctor, which is wrong as if I could get down those stairs, I would be in his surgery, not on the phone. My chronic illness has led to the situation where I don’t get the basic level of medical care, everyone else takes for granted. How can that be right?

 

Following a couple of comments, I just want to make clear that the point I am making is that being housebound, singles you out. Society has set up systems that work for the majority, and I don’t want to be treated any differently, just allowances made for the situation my health has left me in. If what is happening to me right now, was happening to you, you wouldn’t call an ambulance, you would simply go to where there is a doctor you can see, something I can’t do. The barrier of being housebound, is a barrier to my getting that basic care, that everyone else, takes for granted. On top of all of that, the cost to the NHS of my calling 999 for an ambulance is huge, followed by the cost of another to take me home again. This is one of those gaps in the system, one I have fallen into. 

 

Please read my blog from 2 years ago today – What’s missing….?

I woke this morning as exhausted as I was when I went to bed, but at least, I woke once more pain-free in my back but not quite so comfortable in my lungs as yesterday. So pushing myself to have my shower just after Adam went to work, well might sound rather odd, but I am hoping that if I push myself this morning to stay up to time with my normal routine I will be able to have my full 2 hours this afternoon, rather than a short nap followed by a difficult shower. It often feels as though……

 

 

 

 

 

Beyond all limits

It’s hard to believe the difference that just 12 hours can make. Last night I feared that I was on the verge of landing up in the hospital, this morning, I feel fine. Well, as close to fine as I ever get these days. I started to feel bad about lunchtime yesterday, the pain in my left lung and the whole area right down to my groin, kept going into spasm. Just sitting here was beyond uncomfortable, but there was nothing that I could do, other than push through the day and go with the flow. I have been there so many times in the past, so I expected that it would simply stay that way for the rest of the day, but yesterday was different.

I think it was around mid afternoon, that I started to realise that things just weren’t quite normal. It wasn’t just the spasms, but the left side of my abdomen was becoming more and more solid and distended. I was having to sit not just upright, but as though someone was stretching my spine, just to make space for what felt like an ever increasing mass. The internal pressure just kept growing, and as always, triggered more and more spasms in both my diaphragm and my intercostal muscles. Keeping myself busy, and my mind as much as possible off whatever was going on, was in reality, the only thing I could do, that had any effect. I frequently, though, had to stop, try and stretch my side even further in an attempt to clear whatever it was, that was hurting me.

By 6 pm, when I decided to close down my PC and shift myself over to the settee, the closest similarity to anything that has ever happened in my life before, was to say that I felt as though I was 8 months pregnant, heading rapidly towards 9. My entire abdomen was now solid, I do mean solid, not bloated or pliable in any way. The spasms were more or less constant and the only variations there were, was between uncomfortable or painful. Sitting in my wheelchair made the whole thing worse. Wheelchairs are nothing like sitting on any everyday chair I can think of. Your body is forced into what is the perfectly upright position we all should sit in all the time, but the angle of the seat and back, with a distended lump in front, isn’t comfortable in any way. Add in the action required by my upper body to move the chair, and my lower stomach was being squashed in every rotation of the wheels. The distance from one end of our living room to the other isn’t that far, but it was enough, for me to begin to feel sick. By the end of my first hour sat on the settee, I could no longer even add a sip of liquid, without fighting to stop it from coming back up. An hour on, and it had done it several times. I literally didn’t have space, for even the tiniest amount of anything.

No, I hadn’t been on a mega binge, I hadn’t sat here and stuffed myself silly all day. All I had eaten yesterday was exactly what I have been eating every day for weeks, but there I was, feeling like an overstuffed turkey. There was absolutely nothing, different about yesterday, than any other day in my life, but there I was, wishing that I could cut myself open and take everything out. The only thing that was different about yesterday was everything I have just written about and there wasn’t a single reason that I could think of, that could have caused it. In fact, if anything, it should have been the total opposite. I have been going to the loo every day since I upped the dose of my psyllium, yesterday, I went twice.

The correct dose you are supposed to take daily of Psyllium, is between 25 and 30 grams, a level I still haven’t reached. When I first went on it, I found that quantity impossible to consume, so I tried taking about half. For about a year, I was fine on that, I didn’t go to the loo daily, but I was going ever three to four days, which for me, was a massive improvement. The pain never went away, or even lessened, but I knew that I was, at least, going to the loo and that part was painless, which was a welcome and huge improvement. It didn’t last. The pain levels started rising and the amount I was passing fell. So I started upping my dose. Once again, I found one that worked for a while and then it stopped, so in the last three months, I have been slowly upping it every time we made a fresh dose of my pancakes, searching for the level that will once more work.

Psyllium doesn’t cause bloating, or wind. That is one of its bonuses, the biggest one for me, is that it doesn’t cause spasms, I have enough of them without adding more. It sounds like and has been for me, the best way of handling a half dead gut. If I stopped taking it, I would immediately find myself unable to go the loo, until I did reach the point of being overloaded. It was normal for the transition of food to take anything up to 18 days, and no matter how little or much I eat, that isn’t a pleasant position to be in. Laxatives don’t work, all they do is add in even more spasms that are quite simply unhelpful. So what happened yesterday, well other than my body going nuts, and causing rigid spasms throughout different lengths of my gut, I don’t know. What I do know is I don’t want it to happen again.

Adam couldn’t help but notice that I just wasn’t right, but as always, I did my usual, I made light of it. I wasn’t going to sit there and moan, or even scream, which was quite often what I felt like doing. Up to this point, yesterday wasn’t that unusual, just a heightened form of what I have felt frequently, everything had been notched up by not one but maybe three levels. So much so that I couldn’t cover it up, especially not when I found myself suddenly with yet another mouthful of acidic liquid from my stomach. I couldn’t hide the fact that I couldn’t find a way to sit, that dealt with the pain, but everything else, I hid. I hid my discomfort, I hid the problems I was having breathing beyond the shallowest action, as there simply wasn’t space. I hid the fact, that all I wanted was to go to bed, because there, I could stretch out with ease.

It wasn’t until just before midnight, that I started to put two and two together. Whether I am right or wrong, I’m not sure, but I think my theory has a high probability of being right. I hadn’t noticed it during the day, but I had been passing very little fluid, despite my drinking as much as I normally do. When you take psyllium, you have to be very careful to drink your full two liters or more every day. Anyway, at 8pm I went to the loo as I thought I was going to be sick, but instead, I peed for Scotland, then again at 9 pm, before I went to bed. I always wake around 6 am to empty my bladder as not surprisingly, it’s easy to sleep 12 hours but hard, not to need the loo. Last night, I woke before midnight and once again, found my bladder fit to burst. In those three visits, I swear I must have passed the entire amount I had drunk during the day. It was then I started to think. Although yesterday was the worst example, when I am that uncomfortable, just like yesterday, I don’t think I am passing any urine during the day. I am guessing, but I think that my body is collecting the fluid. When it collects in my already space shy abdomen, the pressure increases and the rest follows.

For years, I have been supposed to take Furosemide to deal with this excess fluid, but I have to be so careful with it, as I have Vasovagal, and Furosemide can aggravate it. Falling unconscious isn’t pleasant so I am inclined not to take it at all. I don’t know if I am right, but I am going to try and take enough to make me go to the loo during the day, and see if that changes the growing discomfort, I have during the late afternoon and evening. The next few days will be my testbed and the risks, well now that I am in my wheelchair, they have been reduced, it’s worth a try.

This morning, just like yesterday, I got up and moved my bowels with no issues. I have just taken my first small measure of Furosemide and have my fingers crossed that today will be totally different.

 

Please read my blog from 2 years ago today – 23/02/2014 – The merciful component

On the news the morning once more the were talking about the demise of bookshops on our high streets and how people just aren’t going to town to buy books anymore. Right now in my living room I am surrounded by…..

 

 

 

 

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.