A search for dignity

Over the weekend my arms haven’t been too bad, a lot of tingles and some mild spasms but I managed not to drop anything or to loose control over them. I was reminded on Saturday night of a sensation I have never written about nor has anyone asked me about it, but I am as sure about this as I am that MS causes spasms, that I am not alone. If I am not doing anything for example watching TV or lying in bed, I frequently loose the true location of my limbs. To explain this one is easy for once, I know I have lain down and both my arms are a couple of inches from my body, within a couple of minutes it feels as though they have moved and are now are a couple of inches off the bed surface and my hand is on my body. The nerves are sending me misinformation as to it’s location and it is amazingly realistic, the longer I remain motionless the more limbs join in on the game. No matter how much I correct and confirm to myself that I haven’t moved them, the more I feel they are nowhere near where I left them, it is really odd. So far it has only ever happened when I am motionless, but I can’t help wondering if anyone out there has ever found they aren’t getting true spacial information about their bodies when they are totally awake and in the midst of daily life. I know that I miss gauge the distance of things I’m not actually looking at properly, knocking things over or banging into them with my hands, but the idea of it being worse than that is clearly possible and clearly not something that works when trying to live a normal life. I have just realised that telling someone that your hands and feet aren’t where you left them, is actually quite funny and makes me sound amazingly stupid as well, how can you loose your limbs which are attached to you. I suppose that is one of the thing about living with a mixed up nervous system, it has learned to give out misinformation whenever it wants to and there is nothing you can do about it.

My biggest problem over the weekend has actually been my bowels again, I can’t remember when I last actually went to the loo, but I do know it was before I last went to the hospital, so I took some laxatives on Friday with a very small result on Saturday and a further tiny quantity on Sunday. Over both days I have been having the spasms from hell in my gut, often stopping my and making it hard to move until it lets go. Last night I tried to go to the loo again as there was a mild need to, but I at first couldn’t go, so I did what I have been told not to and strained. If I hadn’t had a endoscopy and a battery of other tests done a few weeks ago, I would now be worrying as what I passed was like spaghetti and to the right hand side of my bowel it felt as though there is a tennis ball sat in there stopping me from going. More laxatives last night and nothing is happening at all, with some straining it is the same as last night. So I am gong to take a larger dose tonight and if nothing has changed by tomorrow morning I will have to call the doctor as endoscope or not this is not normal for me in any way what so ever. This whole issue is really getting to me now, all those test and no explanation of what is happening other than it’s my MS, well hello, there is no way this is caused by MS.

There are so many problems with being housebound that aren’t in your mind when it first becomes clear that you can’t be out there in the outside world independently. Once you are locked into your home unable to do much you then find yourself sat all the time, your weight rises due to your lack of mobility and then the bowel and bladder issues join in. Anyone regardless of the underlying illness will probably at some time have all these issues. Internal health isn’t just about what you eat and drink, the less exercise you take the slower your guts will work, add on to that the drugs that they fill us with and the problems are clear. Whether or not you become housebound by age or health, these issues occur and are common to all of us, so you would think that someone out there would be working on ways of managing it, without having nurses to apply suppositories or supplying incontinence pads which ever are required. I can’t help but think there has to be a better way of managing it all, right now I don’t know what that is, but there must be something. You wouldn’t believe how something that should be simple like going to the loo can impact on your life, but it usually is the small things that just won’t behave that eat away at your day and your life and most of all your dignity.

36 hours

What I am wanting to write today started just and hour after I wrote my last post, as you know I was prepping for my endoscopy, what neither your nor I could have know was all that followed, or that by the end of the day we were ready to send in a complaint.

At 2pm on Thursday I had had nothing to eat as I was instructed and very little the day before, I mixed up the first of 4 liters of the gunk they had sent me, the first sip brought a clear memory of 8 years ago when I was drinking the same stuff, I knew the flavour as well as if I had just been drinking it the day before. I can’t compare it to anything as I have never tasted anything like it, I tried to mask the flavour a little by mixing it with tonic water instead of plain water and loads of lemon juice, a system I had used successfully in the past, it helped a little but it wasn’t great. I just two hours I have to drink 2 liters of this stuff. I don’t know if you have tried to drink 2 liters of anything in that short space of time but it is really hard, by the end of the final glass I was nauseous and blotted to the point of feeling I would burst, but nothing at all had happened. I felt so bad with it that I went and laid myself on my bed, sitting was to uncomfortable and I was also exhausted, I had missed my afternoon sleep. I managed to stay there for just over an hour when I at last needed to head for the bathroom, to my disappointment I did pass some stoles but they were normal to me, just as though I hadn’t drunk any of the horrid stuff, worst still I was still bloated and I had 2 more liters to drink.

Although like the first 2 I was supposed to drink them both within 2 hours, it took me that long to manage one of them, even though half way through it there first signs of success appeared, as did the first signs of my meds not holding off the pain or the even having taken a double dose of anti-nausea med I still wanted to throw up. I did take some of the liquid morphine I had been given as it wasn’t just pain break through I was also breaking into sweats and feeling like hell. I never drank the last one, it was impossible, I had to go to bed again. It wasn’t quite 9pm but I had no energy left, I had to get up again and move as fast as I could four times but after that I slept. At 4ish I woke again, sweating and feeling like hell, I had no doubt this was a side effect or withdrawal if you like, I was in pain and I had no choice to take some more morphine. With it being liquid it went into my system quickly and sleep took over again.

7:30am and it was the alarm clock that woke me this time, I still felt like hell and I knew I needed my meds, with in 20 mins of taking the right doses of all my cocktail I felt human for the first time in 12 hours. All of that sounds bad enough but expected really, it was the rest of the day that has left us ready to send in a complaint to the NHS.

Adam went to work and I knew that I had 3 hours to get ready so plenty of time for me even in my slowed down bitty way to manage it. Wash, dressed, hair and makeup done I was sat ready to go at 11am, the ambulances don’t give an exact time but they ask you to be ready 2 hours before your appointment time, which is fare enough. I then sat here just tinkering on line not wanting to start anything as there was the chance I wouldn’t get it finished. I had all the curtains shut as firstly it was freezing out there and second I knew it would be dark before I was home again. So I waited and waited, at twenty to one I phoned as there was no sign of them, the operator who I spoke to was nice but said something I didn’t believe she thought she had the authority to say. She said that I wasn’t to worry as the it was on the way and although I would be late that I would be seen when I got there. I questioned that but she was totally positive about it. I hadn’t been off the phone for more than 5 minutes when I heard what I though had to be it, so I switched everything off and put my coat on. It always takes a few minutes for them to get the climber and to put out the ramps and so on, but they didn’t ring the doorbell, it was then I opened a curtain to look out and found it wasn’t the ambulance but a delivery van for the corner shop just a couple of doors down from us.

1pm came and went and I phoned Adam as I knew he would be on his lunch break. He was on his way to the ward to seen me and couldn’t believe that I was still at home. He went and spoke to the nurses and they said that as long as I was there in the next hour or two it would be alright. Reassured a little I took my coat off and waited a bit more. At exactly 2pm they arrived. As always they were really nice and told me the ambulance I was supposed to be in had refused to come as they were so behind and had others to drop at the hospital. They had been given the job at 1:30 and they didn’t have a stair climber so they had to carry me down in a slope chair. When we got to the hospital there was a conversation between myself, the receptionist and two nurses, I would be ready to go home at 4pm and the driver said he would book that when he got back to the ambulance so that nothing would go wrong getting me home.

The booking system and discussion went OK and they were happy to go ahead even though I hadn’t managed the final liter, apparently it is common for patient with a combination of my problems and the meds that I take. It would have been nice to know as I wouldn’t have been worrying since the night before. The final thing was for a line to be put in and we were off. She prodded around several times on a vein that I have had loads of lines with no problems in the past, but at last she was happy even though I told her it was hurting, but we went of to theater. The doctor now warned me that with the high level of medication that I am on, meant that what they were going to give me might have little to no effect. He took a syringe of the painkiller they give and put it into my arm and then stopped. There was a lump under my skin, the line wasn’t in my nerve, and the drug was just under my skin. New line into the other arm and they gave me the sedative, they could do nothing about the pain meds as where they were could mean they would take hours or minute, they didn’t know. I don’t think either had any effect at all on me, but the endoscopy was fine, just one area where they had a problem getting round but that was all.

The good news was they saw nothing to worry about and they took three biopsies to be on the safe side, so it looks as though it is as first thought just my MS. Back to the ward and 10 mins to rest then a rush to get my clothes on to be ready to go home. 4 o’clock came and went, at 4:15 the nurse phoned, there was no ambulance booked according to the operator but she would send one. Adam arrived on ward at just after 5, he took me out for a cigarette as I was a screaming point with all of it. Back on the ward again we waited, the ward should have been shut at 5 but they were all still there because of me, arrangement had been made for my to go to another ward to wait there but as we were about to move, an ambulance arrived, but one that didn’t have a climber. Although it is all clear on their system that I am disabled and need a climber they had been sent to assess the situation. All of us Nurses included exploded at them, all followed by apologizes as it wasn’t their fault. The discussion went back and forward and we were taken to ward one, by now the clock was ticking toward my needing my next round of meds, they aren’t the kind of drugs they would hand out either as they would all have needed a doctor approval, that would take hours.

Another half an hour of waiting, the same crew reappeared, they had been told to go right across Glasgow, at peek time, to pick up another ambulance which had a climber and come back for me. It would have taken them more than 2 hours to do so. They had taken the decision to just fetch me and take me home, carrying me up the stairs between them, something that shouldn’t have been done in case they injured themselves. They clearly had seen the state I was in and what ever the nurses said to them about how I was, had made them realize it wasn’t right to keep me there any longer. As we were leaving one of the Nurses was still there and she was about to put a complaint in herself, as the whole thing was just one big mess that should never of happened.

If I had been a fit person who isn’t adversely effected by stress and who hadn’t found the past 3 days without food and horrid stuff to drink and didn’t have enough to put up with without treatment like this, well maybe that wouldn’t have mattered, but if I was, I wouldn’t have needed their help at all. I almost didn’t get the endoscopy at all if the ambulance had been another half hour, it just wouldn’t have happened and I would have had to start all over, getting an appointment starving and everything else. We all know there has to be cutbacks, but if cutting means that patients don’t get treatments done when needed, and ill people are stressed into being worse, the cuts they have made are back firing, as it would have cost far more to rearrange not to mention increasing the waiting list.

Today, I am tired and I am feeling at the worst I have in the last few months, and all because of an ineffective ambulance service, who ever is in charge clearly isn’t getting it right!

Getting ready

Trying to get through the first day of this silly diet that I have to be on for the endoscopy on Friday. When you live on a totally different diet and open the fridge to see melons, satsumas, seeded breads and salad, all that can’t be eaten, is horrid! For my breakfast I had a wrap with nothing on it, that was all I fancied eating out of what was a possible choice. There is nothing like temptation to make you feel hard done by, lol. I will really be happy when Friday is over regardless of what they find, I will hopefully be able to open the fridge and eat, rather than see it as some kind of torture.

Over the last couple of weeks I have had something new going on, I didn’t mention it to the Doctor when we saw them at the hospital the last time I was there as it had only happened once, but I now keep getting these terrible spasms, as though someone has stuck their hand into me just below my breast bone and grabbed everything there in a vise like grip. I doesn’t cause any pain anywhere else, but it increases that sensation of pressure that I have under my ribs. It doesn’t burn like indigestion, so I don’t think it is my stomach, once again it is more a crushing of my upper intestine. On Monday it was there most of the day in a much gentler way, it never cleared, the sensation was almost as though I had a tennis ball sitting in that position, doing nothing but getting in the way. When I eat it increased and on two occasions it was intense for about half an hour. Yesterday there was no pain or discomfort at all that I remember but today it is just as it was on Monday, a constant gripping pressure. I guess that I will have to mention it on Friday before the Endoscopy. I think I said it before but I really feel as though I am slowly decaying and falling apart, some days I wish they would just get on and fix it and on others I wish they would just leave me alone to decay quietly.

My tiredness isn’t lifting at all either. I think in the past 3 weeks I have only managed on a couple of occasions to stay up to 10 o’clock, I’m so tiered that even 9pm is pushing it. I hate it when I need to sleep this much as I hardly get a chance to spend any time with Adam. He seems to be home for just a few minutes before I have to sleep, it isn’t much better at the weekend as he has always slept away the mornings so I am going for my mid day sleep at about the time he is getting up, so we really only get from 4:30 to 9:00pm together, then once again I am asleep. When I am like this I feel as though we are just passing each other occasionally in the same space.

I realised the other day I am heading rapidly into my first anniversary as a blogger, it was just before Christmas last year when I wrote my first post and looking back at it I can’t believe how bad it was. I am not kicking myself for it as well we all have to learn and writing may be something we do daily in notes, emails and so on, but it is no comparison to writing what may be read by total strangers and you have decided has to come from your heart. I so often hear from people that I have been incredibly brave to share all of this but I can’t see it that way at all. I suppose we all judge and apply different standards to different things, but I have never made a secret out of any part of my life with those I know, so expanding that wasn’t hard. The hard bit is finding the words that explain everything in a way hopefully everyone understands. When you are talking about something personal, which illness is, you use the word that make sense to you, that doesn’t mean anyone else will know what you are talking about. Strangely I although hard, I have enjoyed doing that, it has been my daily mind work out if you like. I’m going to have to check the actual date, well it is a writing milestone if you like. I actually thought when I started that it might be a bit of fun for a few weeks, I didn’t realise what I was starting.

Endoscopy appointment

My appointment for my endoscopy has arrived, it is on Friday are 1pm. When the envelope arrived I knew as I had an endoscopy about 8 years ago that the big packs where the horrid mix that I have to drink the night before and I thought that the booklet that arrived would simply be to tell my what would happen and when to take the gunk, I nearly put it into the kitchen without looking at it, but for some reason I read it, which turns out to be a good idea as things have changed a lot! There is now a diet to be restricted to for the 2days before and on the day of the actual process. For the two days before I can only eat the type of food that I actually hate, almost everything I eat is off the list. I am supposed to eat only white bread, breakfast cereals, fish, meat, peeled potatoes, white pasta and white rice, crisps, rich tea biscuits, cheese, sauces not including Tomato. Basically a totally fiber free diet, 99% of what I eat is fiber, one of the reasons why food not passing through my gut is a rather odd thing to happen, so far today I have had a large bowl of porridge and 4 pieces of fruit, Adam constantly compares me to a rabbit, all not allowed for Wednesday and Thursday. Out of what I am allowed to eat the only things that I have in the house that I would find edible is the pasta and rice, both of which I am happy to eat plain. It does seem a little odd that you aren’t allowed fiber, when they are asking you to drink two liters of liquid that will make you run to the loo constantly for several hours. I will of course comply with this as they want me to.

On top of that they now lay out in detail when you are to drink the gunk, it has now to be in two sessions one in the afternoon the other in the evening, and once you have begun drinking the gunk there is no solid food at all, just sugar free drinks, excluding milk, why sugar free? What concerns me is Thursday evening, I don’t like the gunk but that isn’t the problem, my medication it slow release, the gunk is going to force it through me at speed, so how am I meant to control my pain levels? I think that is something I am going to have to phone my GP about, as that does worry me a bit, it isn’t just the pain though as I know that the withdrawal of my MST and Amitriptyline would not be a nice thing to go through. I have on occasion forgotten to take my Amitriptyline in the past, as it is a liquid and the rest are tablet. With in a hour of missing it, I have been in a sweat and feeling like death, I have no idea what a sudden stop of my MST would be like. I’m not sure other than an injection what they can do to make it easier.

So once again the NHS have booked out my Friday, I have to say that I am impressed at how quickly this appointment has come through, I did expect to be waiting about months, so thumbs up there. All I hope is that they find something useful and stop me feeling like I do and that they can get my gut to do what a gut is meant to do, without pain preferably. I almost bet I am gong to come home with yet another label just as I did after my scan, I never thought that I had gallstones, but I do and I can’t help wondering what else is lurking in there, this could be interesting.

Hospital again and agian and…

I am so far behind my normal scheduled today that I have given up any hope of catching up. I had my appointment at the hospital this morning to find out what happens now with the problems I am having with my guts, this time I had to wait but not too long and it what a different doctor that I saw this time. We discussed the gallstones and at the minute it looks as though nothing is going to be done about them at the minute. The doctor like me isn’t convinced they are the root of the problem, more something found by chance. She like me thinks it is more a gut problem than a problem with my gallbladder, yes I get pressure and discomfort in that area but I get discomfort right across the front. The other tests that they ran show there are some raised levels of enzymes that could be because there is some type of inflammation of the gut so I am going to have to have an endoscopy. I have had one before about 8 or 9 yrs ago, so I know what it is like and what I will need to do before it, but this time I won’t be sitting around worrying what is going to happen as I know. I very much get the feeling though that she too thinks that at the heart of my problems is simply my MS, the endoscopy is really to ensure there is nothing else going on. I did mention the connection to the vagal nerve and she confirmed that it was a possibility but one we would look at after the other tests.

So I now wait for a letter and the good news that I once again have to go up and down our stairs in that horrid stair climber, even now having done it 5 times, as the first trip out they carried my down and used the climber to bring me back up again, I would still not recommend it to anyone. This was my third trip out in just a couple of months and to be honest knowing I am going to have to be doing it all over again in the not to distant future, isn’t filling me with glee. To anyone that is reading this who lives on anything other than the ground floor and has just found out they are ill, move house now!

Adam managed to once again come with me to the hospital so although I was as normal falling over my words and forgetting what I have to say, I at least knew he was there to rescue me if I blanked which of course I did, but for once covered it with humor rather than getting upset by it. Both of us left there with more confidence in the doctor we saw this time, it is amazing how much the way the doctor reacts to questions and gives enough of the human balanced with medic can make. We did talk a little further as to what if the endoscopy showed nothing and it would come down yet again to trying to manage the situation through medicines, I have a feeling that will be where it ends, as I said months ago I am sure this is still my MS but at least for once they have looked past it just in case.

There is a lot of work ahead of us to get life balanced again and to deal with the mess I call a brain, I know and so does Adam I think, that this is the start of the bad slope, the one that is dividing me away from the normal world. I have come to terms in the past few days that I am past the stage of my working with list and memory prompts, I now need that second brain to double check everything and aid me to manage a little longer with out outside intervention. That day will come but I want and need to push on as a person for as long as the ‘mess’ will let me. It has taken a full week but today I at last feel like a person again rather than a someone who could do nothing but cry.