Avoiding life

I’m running on avoidance this week. That means I am doing everything and anything that I can think of, just to avoid doing anything. It that makes sense to you, then welcome to the avoidance club. It is probably one of the most stupid of human states, that exist. It would quite simply be easier, to just do what we either have to, or to just declare we aren’t going to do it. But, no, we flit from this to that, and back again. Looking at web pages that hold no value, or even interest, rather than close it down, and if not do what we need to, at least, do something of value. Granted, avoidance isn’t actually dangerous, well not unless you happen to find yourself in the kitchen. Yep, that is where it can get truly dangerous, to our waistline, especially, at this time of year. Those nice little treats, the things we can only and do only buy in the run up to Christmas, have somehow snuck themselves, already, into our cupboards. It was bad enough before, but now, well now not only, can you take a nice healthy handful of nuts, but you can cram a lebkuchen or mini mince pie into your mouth and quietly, roll away. We kid ourselves that’s “it’s just one, it won’t do any harm”, but that’s five already and it’s not even lunchtime. Avoidance, in November and December, can turn, truly deadly.

So what is it, that we in the avoidance club, are working so hard to avoid? Nothing, absolutely nothing, well nothing of importance. That’s the whole reason, it’s so stupid. All we’re working on avoiding, is the normal, the mundane and the everyday. When you have PRMS, or any of it’s cousins, routine, is essential. It’s the thing that keeps the worst effects of our health at bay. That stops those wild spikes, those spasms and the pain we don’t want to feel. But routine, well it’s routine and occasionally, somewhat boring. I know all that could be read and taken in different ways, but no I’m not bored with life. I bored with the things I have to do to live it. Right now, I’m bored with every single little bit of it. I’m bored with getting up to the alarm clock & sleeping when the clock says it’s time. Of spending more than half my day asleep and of that time always feeling wasted. Of never having enough sleep, and always wanting more. Of eating the right things at the right time, because my guts can’t take it if I don’t. Of the frequent spells where I consume more medication daily, than I dare in food. Of sitting each and every day at my computer trying to fill my day, because I can’t have a job. Of the people who can’t see past my disabilities to see my abilities. Of the stairs that trap me, making the outside world inaccessible. Of the body that even when assisted can’t take the pressures of being outside even for a few hours. Of the fatigue that stops me for dressing, putting on my makeup and never being able to feel feminine. Of the pain that won’t let me care for me, far less my home. Of seeing dust and not having the strength to clean it away. Of not being able to at least walk to the kitchen, to stuff my mouth with what I shouldn’t be eating. Of having to use a wheelchair that causes me nothing but pain. Of all the problems that life in a chair brings with it. Of having only friends who I have to type to, as there is no one here in my reality. Of a reality so false, so manufactured, that nothing is unexpected, changed or exciting. Of not being able to deal with the unknown, as the fear of being lost is too great. Of being alone all the time. Of being too tired, too fatigued and unable to handle people around me. Of a brain that can’t keep up with conversation. Of a mouth that slurs and stutters my words. Of muscles that twitch and jump when not required, always in an embarrassing fashion that never stops. Of a bladder, that doesn’t understand the most basic thing it was created for. Of a house that doesn’t let me move freely when that bladder or its friend the bowels demand. Of having to maintain balance, while juggling everything that life is and it isn’t. Of being caught in a life so alien, that if an outsider was forced to live it, they would class is as being in prison in hell. Of all of that and a million things more. So as stupid as it might sound, despite routine being my saviour, it is also my jailer and my only escape is avoidance, as dangerous as it is.

Even in the midst of avoidance, you have to obey as many of the rules of life, as possible. You can bend a few, stretch the odd one, but drop any and the price is too high to contemplate. I often wonder if half the truth of fatigue is down to never being able to drop a single ball, as it won’t smash into the ground, but into your soul. There are just so many rules, far more can’t dos, than cans and even fewer possibles than impossibles. Is it any surprise that we at times, we just get bored of being the juggler. I remember when life was easy, you got up and you did what you wanted. Before someone says, well I have to work and I don’t want to do that, well I’ll swap with you any day, you can leave your job and find a new one, I can’t. No job I ever did, was as hard as living like this. So as I said, you got up and you did what you wanted, when did I last do that. I get up and want to go back to bed, but I can’t, if I lay there any longer, it would be bedtime again. 11 hours of being awake, 8 hours that can be intensely boring, regardless what I do, what order I do things in, they are always the same. Can you imagine spending 4 years, day in, day out, doing absolutely nothing different from the day before and I do mean nothing. Even long periods where every meal is identical every day. You could lay it out in three columns, each bowl, each plate identical, for months. Weekends, birthdays, even Christmas, don’t really exist, as my days, they have to be kept the same, otherwise I pay for it. The movie “Groundhog Day” has nothing on my life, he at least realised there was a way out, there is none from mine.

Most of the time, I’m happy, more than happy, I’m content with my life. Trust me, content, is far harder, to achieve than happy. Then days like this appear, where I want to smash it all into pieces, and refuse to do it any longer. Days when I want to stand up and shout at it, do your worst, I am so bored with all of this, let me out! It isn’t that I am bored of writing, of chatting on twitter or spending time with Adam, I guess that what I could really do with is a holiday, but how do you take a holiday from life. I can’t go anywhere, I can’t pretend that my life is anything but what it is. So I picked on something I could do, I can avoid. I can take my routine, and for just a couple of days, I can file off the edges, smooth off some of those “todo’s”, sit with a slouch rather than constantly check my posture. Be comfortable, rather than watchful, just stop being the goody-goody my health has made me. Eat, if not all of the bad things I’d like to, one or two of them here or there. Just chill a little, kick back and be a slob. For a day, maybe two at the most, it doesn’t hurt, as long as it doesn’t become a regular wheeze, it doesn’t hurt too much. It all sounds so easy, but remember, one eye always has to be watching and one ear listening, just, in case.


Please read my blog from 2 years ago today – 19/11/2013 – Surprises

I couldn’t believe that when Adam came home at lunch time yesterday he picked up a letter that had arrived during the morning. I knew from the envelope that it was from the hospital, something…..

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.

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?