There processes, that’s all

One of my many symptoms that come and go seems to be getting worse. For years, I’ve had issues with eating. Like a lot of people with MS, I frequently get food stuck and/or choke on it. At one point, I was almost totally unable to eat, because it didn’t just make me feel sick, but ill. There is a big difference, feeling sick can be fixed by taking a metoclopramide table, every time I ate anything beyond tiny quantities, I felt as though I had a really bad dose of the flu. Eating was literally making me ill. I know that makes no sense, but I was desperate to eat but I couldn’t. My weight dropped to just seven stone and I landed up with a gastric nasal tube in place for nearly three years. The cure was as odd as the whole event, when I became housebound and didn’t have all the stress and exhaustion of getting ready for work, being in the office, coming home and undressing again, when suddenly life was relaxed and at my bodies pace, I slow managed to increase the quantities and eventually even remove the tube altogether. I still can’t eat great quantities, if I do I still feel ill, but little and often, has worked now for years. Finding myself with now an increasing range of food problems was something I didn’t expect, I really thought that I had this one licked.

The first issue I noticed was a couple of months ago when I suddenly found myself with tablets sticking in my throat again. Not just occasionally, but almost every round of meds meant I had a tablet stuck somewhere. Some of them weren’t even going down at all. I think they are gone, but by the time I move from the kitchen to the bathroom, I would suddenly find one back in my mouth. Tablets are without a doubt, both the biggest and the hardest things that I try to swallow, so I suppose it wasn’t a surprise I noticed them first. Most of my meals are either made up of soft foods, ones that are by nature both small pieces and granular, such as granola. I do eat a lot of nuts, but because I’m aware of my problems I’m always careful to chew everything well. So a couple of weeks ago, I was shocked when I found I was having problems with even the finest foods. On several occasions just like anyone else, I have swallowed the food I had in my mouth, and added another spoonful, only to find, that the food I thought I had swallowed, wasn’t gone at all, just sat in my throat going nowhere. What can you do when you have the equivalent of two mouthfuls, trying to fill the space where only one should be? On others, it has been sat over the entrance to my throat, in a way that is hard to remove in any direction. Add that to the growing number of time that my soft palate goes into spasm and I can’t even get a breath, well, eating, is now once again becoming a problem.

There is no point in my telling anyone, I have already been through all the tests, all the hours of sitting with a speech therapist being taught how to deal with it all. I have gone through all the lessons about how to eat, what to eat, to keep my chin tucked in rather than raised as it’s supposed to open everything up again, not the word supposed, it does unless there’s a spasm. I’ve been through it all, so unless it gets to the point when food is a pure danger or impossible, there is nothing to be done and I really don’t need to hear someone saying all of that all over again. By the way, our throats, are yet another thing that is controlled by the ever troublesome vegas nerve.

Last night I went to bed, with my heart filled with trepidation. It actually all started three days before when I went to the loo with no problems, well other than there was a piece of stool, trapped at the exit of my rectum. I know that I said I wasn’t going to write any more about my problem with my guts, but I said that before all this happened and this, it’s all totally new. Over the last few months, having a piece of stool I couldn’t get rid of has become quite normal, something I have learned to live with as no matter how I try, all I do is cause myself pain. Yesterday, though, well I had just had enough of it and I decided to use a suppository. A simple step I’ve used a couple of time now that removed the problem with ease and with the wind I had, I thought it was the best solution. The last couple of times, after I had cleared my bowels I had a short spell of mild incontinence, usually more mucus than anything else and it passed really quickly. I was relieved yesterday when it didn’t happen at all. The only thing that seemed wrong was the rather small amount that the suppository relieved in the first place, plus my normal pain was growing, but everything seemed fine right through the morning and early afternoon.

At 4 pm, as always, I went to fetch my psyllium pancake and a small bowl of nuts, as I was just about to sit back on this chair, I felt it, and I knew it wasn’t just mucus. I had the wateriest diarrhea I have had since I had the endoscope investigations two years ago. I cleaned myself up, but it just kept happening. Fortunately for me, I was fine as long as I sat still, (my normal life position) and didn’t have to move from one chair to another, or to get to the loo. I did what I could to clear what was there, but I wasn’t really clearing anything. By the time Adam came home, I had convinced myself that it was just some kind of extreme reaction to the suppository, so I saw no point in even mentioning it. Something that again, I admit that I do too often. Even when I went to bed, padded so that I hopefully couldn’t have an accident overnight, I said nothing to him.

When I woke in the middle of the night dripping with sweat and once again feeling sick, was the first time I began to wonder if I had made a mistake. As I leaned forward to reach my dressing gown and wheelchair, once more I felt semi-solid liquid escaping me. I freely admit that I then allowed the idea that I had a much bigger problem to enter my head. I examed my own abdomen to see if I could find any area where there was a hard mass, I found nothing. Yes, my abdomen was tender, but that isn’t anything new, it frequently is. I have been examing my stomach for years, so I am sure that if there was anything there, I would have found it. Right or wrong, I made the decision that it was just something else that I was just going to have to get on with.Yes, I woke up during the night feeling sick but a metoclopramide tablet, dealt with it and I managed to return to sleep.

Eight hours on, well, on the good side, I’m still here and nothing has gotten worse, in fact, the diarrhea seems to have dried up. There was a little there this morning, but after a couple of hours of being upright, I’m sure that that is, at least, is over and done with. I know that anyone else out there would have been to their doctors or the local hospital, but being housebound actually puts both of those things out of reach for me as I have explained many times before. I’ve written all of this because it has to be documented so that it’s here, where it belongs, amongst all the other joys of life with chronic illness. It is just another 24 hours of my life, hours I have to remember and I have to be able to tell the consultant when I see him. Whatever is going on inside me, it’s clearly getting worse.

 

Please read my blog from 2 years ago today – 02/04/2014 – The 10 year root 

In the last couple of weeks, I have been having problems with the internet, the download speed has dropped to a ridicules 3.7 and I had simply had enough of it. I hadn’t even been on our providers website for years, so, of course, I had forgotten my password and there was only one choice to reset, once that was done, I logged in with two things in mind, firstly to find out if we still were in contract to them and second who to complain to. Much to my surprise, I had just clicked on the complaints tab, when it took over and ran a speed test, telling me we should have a download speed or 12.5, it was our router that is causing the problems. I hadn’t even really considered the router as a possibility, although I did rebooted it just the other day, just in case and when there was no improvement or change, I put it firmly back in the “Talk Talks” domain……

This isn’t me

Stupid. That’s just how I feel and it is probably one of feeling that binds all of us with a chronic illness together. It doesn’t matter what is wrong with us, there will be elements of it whether it’s through dropping things, not being able to remember or the tears that run all too easily, we land up at some point, feeling stupid. I for one can tick the boxes beside all of those examples, and I am sure if I sat for a while and thought, I could come up with several more. Last night, I once again found myself believing that we were on a different day. Adam had come home at lunchtime, he is off work until Tuesday but is going to his Mums on Sunday, as it’s Mother’s day.

Knowing all this, is one thing, being able to live in a day that isn’t normal, isn’t. I was confused and I set up our TV viewing while Adam was out of the room fetching my evening G&T. I don’t fully know if I like my evening Gin because it’s alcohol, or if it is the invisible effect it has when mixed with my drug, or simply out of ritual. All I know, is I hate being without it. Anyway, I have digressed. I was confused long before it arrived. Most evenings, we have programmes we watch because of the day of the week, not because it’s when it’s broadcast. Yes, we have joined the rest of the world. Not totally, there are still some the TV companies dictate, but we’re getting there. After an hour of viewing, we flicked the TV back the BBC One, while we went to fetch my drugs. It was then, that I felt stupid. There was Eastenders. Despite checking and double checking the listings, I had made a mess of it yet again. How can I read the details, off the screen in front of me, yet not see it? How can I do this again and again and again, but still get it wrong?

Adam repeatedly tells me it doesn’t matter, at first, he seemed to think that I was upset about missing the show, of course, I’m not. I’m not that stupid, I do know about the I-player. It has nothing to do with missing anything, but everything to do with the fact my brain is running away from me, faster and faster. With ever step that it takes, that feeling of being stupid is growing and handling that feeling, is also getting harder. I can’t any longer just brush it aside as I used to. If I could, I wouldn’t be writing this, this wouldn’t be the subject of today’s post.

It doesn’t matter how ill we are, what doctor’s say about us and what other see, just like I said in yesterday’s post, we still expect our bodies and minds to work. There is a huge difference between things that a physical aid can help us with and those things. we can’t now do, but we would expect a 7-year-old to be able to do. Wether you miss your mouth when trying to eat, or miss programme the TV, they are things that are so simple, that there is no other feeling we can be left with, other than feeling stupid. You might think that it’s just because it is clear and has been witnessed, but it isn’t any different when there is no one here to see it. I know some people will have thought that it’s just embarrassing, well it is, but it has far more to do with the feeling we are useless.

When your life has been chipped away at. When you have changed from a vibrant intelligent woman, into someone too stupid to be left alone with a remote control,how would you feel? When you have been the person who took DIY from plastering to decorative features with ease, but can’t even install a suction cup grab bar because you don’t have the strength, how would you feel? Falling over is physical, people fall over all that time, But when you can’t take a single step without being in danger, how would you feel? When you find yourself lying on the ground, unable to roll over, crawl or stand up, how would you feel? When letters and telephone calls scare the hell out of you, how would you feel? When you can’t make it through your own home in time to not wet yourself, how would you feel? And so it goes on, stupid is totally an unavoidable feeling.

So how do you deal with it? To be honest, I don’t really know. Yes, I can brush it aside and say it’s just one of those things. I can do all of the logical steps that as an adult, means it rationalised and makes sense of it. I can tell myself that yet again, my body is failing me and it’s not my fault, but deeper inside, I still feel stupid. Why? Because I quite honestly don’t know what else to feel. From childhood on, if we do something like any of the above, we are told we are being stupid. I can still hear both my Mother and my Father telling me to “Stop being so stupid”. When you go to school your teachers tell you just the same things, so “stupid” is engraved in us. It’s a place where we have been told is a bad place to be, no one wants to be singled out, no one wants to be “stupid”.

Being permanently ill, brings so many things with it that we can deal with on a rational level, but it also brings much that is the complete opposite. Where you put those feeling and how you handle them matters, but no one counsels you on exactly how to do that. Each of us has to work out for ourselves just how we do that. I for one, write, this is my first post purely about it, but you will find tiny pieces hidden in different ways, as until now, I wasn’t ready to stand up and say “I’m stupid” or even “I feel stupid”, quite so loudly. None of us want to be here and I know without a doubt, there are millions out there who know exactly what I am talking about. The frustration we feel, the disbelief that despite all we have done to avoid those triggers that leave us feeling this way, yet we’re here, again. The self-anger and disappointment just grow and if we don’t find a way of dealing with it, it will only get worse. Not only do I write, when appropriate, I’m now vocal about it. Last night I didn’t hang my head in shame, I let it out and I pointed it out as well and by doing so, it took the blame off me, and put it where it belonged, with my health.

There is much that shows me that my brain damage is growing. I don’t need any more tests, I know it’s failing me and it’s just getting worse. I can either just feel more and more “stupid”, or I can be honest about it to myself and to those around me. This isn’t me, and that’s something I have to remember every time that word tries to appear in my head. I’m not “stupid”.

 

Please read my blog from 2 years ago today – To work or not

Just raising the mattress last night by 4 inches meant I woke this morning without any pain in my back or lungs, the answer was there just waiting for my stupid brain to catch up with it. For somebody that used to be paid for having an analytical and creative brain, it really is a bad show, to say the least. Yesterday was my normal day for the shopping from Asda to arrive, the delivery guy was one who comes here a lot and we have talked about all kinds of things in the past few years. Just as…….

 

 

 

 

The gastric tube

Everything I did yesterday and so far today seems to have taken twice as long as it would normally take, I am still so tired that my body and mind feel as though all movement are being preformed in slow drying cement, harder and harder as the day passes. I again crawled off to bed early as I couldn’t stay awake any longer I should have gone earlier but I wanted to see the end of ‘Casualty’, I know I could have recorded it but it just isn’t quite the same when watched the next day. I suppose there are a lot of things in life like that, they have to be enjoyed at the right time for them to fully satisfy your soul. Because of my inability for a second day to actually get through my normal goals list for the day, I have found myself playing a bit of catch up on my writing and twitter. I hate having to do that as it means my goals are too high for me to get through them and it is hard not to beat myself up about it. I set my goals and I set them lower than I would like and not even getting through them is a real kick in the guts. I know it isn’t my fault and I just have to accept things as they are but it still feels like a failure how ever I look at it.

The last few day though have actually finally put to rest the niggle in the back of my mind that was saying ‘you might just be able to’, that little annoying voice that wants to push me into doing things I used to. I now know 100% that my days in the outside world will never return, it is now clear in my head that I wouldn’t survive out there on my own, it was hard enough when I had assistance all the way, I will never be able to do any of that alone. Knowing something and actually putting it into action really are two very different things.

I don’t think I have mentioned this before but when I became housebound there was a wonderful plus that came with it. About 8 or 9 years ago I went through very similar problems to the ones I have now with my bowels, if I eat to much at one time I become really ill within minutes, the only way I can describe it is to say that it is like being drunk without any of the good side. I feel dizzy and sick, feelings that make me want to go to bed and curl up until it goes away, often with it I will start sweating as well and I just want to disappear. I found a solution to it on the first time round, I had to as I couldn’t work feeling like that. I slowly cut and cut my food intake, the less I ate and the more it was liquid instead of solids, the more I could control feeling ill but there was a side issue that went with that process, I lost weight. I’m not talking about a few pounds, I went down to 7st 2lbs, at 5ft 9in that is way to light, I was actually so low in my weight that I was in the danger zone and I had no choice, I had to have a gastric nasal tube inserted and my food slowly over 24hrs entered into my system. I had that tube in place for over 3yrs, with no solution being found through out the whole process. I hated it but I learned through necessity how to manage the whole system and slowly my weight improved, but there was no sign of being able to get rid of it, I tried almost every day to speed it up or to eat something but the results where always the same, I was ill. Then I became housebound. Over the first 3 months I persisted with trying to eat as always but I was getting a positive reaction and bit by bit I managed to get my food up to a level that allowed me to remove my tube and not replace it. Over the same few months I also slowly felt better than I had for years, the only thing that made sense and the Doctor’s agree, is I had removed the stress and exhaustion of getting dressed and going out, my body then had the strength to work on other things, like not being ill when fed.

I have never managed to eat normally since but I can manage a meal every couple of days and small snacks of fruit and veg have actually resulted in my now being over weight, then in December last year it all started again, with the addition of incontinence. I have maintained my weight but there has been a growing inability to eat again. When I was with the Doctor on Friday it was this that pushed me into tear, I really do not want to go through all of that again. I have no desire to return to living with a tube over my face. I have been trying hard not to get upset about it for months, to just push it to the back of my mind and ignore the possibility that the eventual result may well be a repeat of what I hoped was history. Believe me a nasal tub is no fun.

The whole experience was so painful that I hadn’t wanted to write about it, although I knew I should so that the truth is clearly laid out here, to actually put it into words for others, well I have at last done it. Add all of the above together with the sticking and choking when I do eat and I think you will understand why I am praying they will find something, something that explains the whole problem, and most of all something they can fix. Spending the rest of my life with a tube is probably the last thing I want. It may sound nuts to you but I would rather my arm stopped working again, than to loose all ability to eat. I know only time will tell and I will, just as always have to accept the outcome.

I ate well! I exercised! I became ill?

A second quite day is ahead if I can ever get Adam out of his bed, he is going out for the day as it is his Mums birthday, Adam and his sister and her girlfriend are all of on a cycling trip, an unusual way to spend your birthday but if it is what she want then it should be what she gets. I am a strong believer in that is what birthdays should be. I have already been through 3 time to tell him that he has to move but I am being ignored, well not totally there is a grunt from under the duvet which I am totally sure isn’t an awake grunt. If he would just get up he would see that it is actually a perfect day for their outing, the sun is shining in a beautiful clear sky, but it is cool with a light breeze.

Years ago I used to cycle a lot, it was my only transport other than my feet so when I was on my own I cycled. There was on problem that i found with a bike over just walking and that was because first I was forced to go by longer routes and second I couldn’t actually carry as much shopping. In reality it was always easier to walk, but I used it to go to work when I was on the day shift and also if I had forgotten something from the shops, well the nearest shop to the house, even for a pint of milk was 2 miles away. When I moved to Glasgow I got rid of my bike in the first week, it was totally useless, if you have ever tried cycling in a city, especially in the early 90’s when there were no cycle lanes and so on, you will understand why I ditched it.

I have often found it strange that so many people who actually exercised more than the average, are the ones who more often get ill. Walking and cycling were not my only exercise, again before I came to Glasgow I swam for at least an hour each day and when I did stop cycling and swimming I took up exercise at home, weights and so on and I also took up dancing for at least a couple of hours a day. The only thing I could say I did wrong was smoke, I had a healthy diet and drank either nothing or just one or so alcoholic drinks a week. I remember as well that when I joined the doctors about 15yrs ago, the practice I am still with, my cholesterol level was so low they repeated the test as they didn’t think it was right.

You only have to listen to the News or talk to any others that you meet on stays in or visits to hospital and you will hear similar stories, I find myself questioning more and more the point of staying fit and eating well. I have to say I have given up on both, I don’t eat a lot but I eat what I want, rather than what I should and I drink everyday, it boosts the meds at night without my feeling bad in the morning. My health is so bad and I know my prognosis, so I am going to enjoy what I have left, I can see no reason now, to do the right thing, as I did for most of my life. Ironically it was because I always felt ill, that pushed me into trying to be fit in the belief that if I ate well and exercised I would stop being ill all the time, my health just got worse.

I don’t know if there is any research into this or not but it seems as though there is a really high number of so called fit people, getting serious chronic illnesses, we might not have damaged hearts and be riddled with cancer, but we get other illnesses instead. I do feel a little conned, I did all the right things in the belief that I would have a longer healthier life, what I got is the opposite. I wouldn’t be surprised to find their is little if any research into the previous health of those with autoimmune illnesses prior to diagnosis, why? because of several things, one being the question I asked and pushed the Doctor for an answer to, that was how long did they think I had had this for. He had to admit the NHS had been getting it wrong for about 20yrs. No Doctor is going to want to admit that, I didn’t think of it at the time but I guess it could have been another one of those things that I could have sued them for, something I don’t think is right to do.

I suppose it is normal to want to know why, what went wrong and why me? Questions that I expect to never have the answer to and ones I am sure not to be alone in wanting answered. I don’t ever remember been asked questions about my physical fitness or what my diet was like. None of my history was asked for, nothing was investigated after the MRI and Lumber-puncture came back positive, as did every test they did over those three days, that was the end of any investigation ever done. I still get the feeling that doctors don’t want to talk about anything other than medications how I feel and how I am coping, don’t seem to have ever come into it. Am I alone in this or have you heard of, or gone through the same thing?