The problems of winter

My whole day is going to be centered round drink a horrid gunk that will flush my guts out, 1 liter to drink this afternoon at a pace of one glass every 15 mins, of course they don’t say what size glass, I would prefer to get it over and done with so I will use my normal “Slim Jim”. Then this evening I have another 1 liter to drink, the actual times are not set but what I want to do is head of the earliest version of evening I can as I once again last night was in bed by 9pm and I won’t be able to sleep this afternoon, well I doubt I will anyway. On the food side today there is a total of Zero solid food, just clear sugar free liquids. Eight years ago the system was different, you were allowed to eat and drink until 6pm and then had 2 liters to drink at one time, well it took me 5hrs and I through the last half liter went down the drain as I just couldn’t drink any more of it. I am going to try mixing it with tonic water and lemon juice, I just hope it is easier to drink.

There is no doubt that science has brought us forward when it comes to diagnosing things without surgery but I have yet to find any medicine or medical compound that has anywhere near palatable. I know that they are there for a different reason, but it would honestly make a world of a difference to someone like me who seems to spend most of my life having to drink there offerings. I used to believe that they actually did it on purpose to put you off being ill, well it didn’t work!

I am so glad that I actually turned the central heating on on Tuesday night as the temperature is now well below 0 and it to stay that way through out the week. Last year when ever the temperature fell this low I didn’t open any of the curtains on those days and it is the same to day, every curtain in the house is closed to maintain every tiny bit of warmth I can. One of the things about being disabled is that I find it hard to generate heat myself, so if I am sat in a cold room I feel it. I actually last winter bought myself a few things to help and I am so glad I did now. To look at me right now I would present a rather laughable picture, I have a nightdress, pressure socks, two dressing gowns and I am inside a sleeping bag, funny but I am warm. I also bought to heat pads that I can put in the microwave which then generate heat for a couple of hours, not in use yet but possibly soon. For the evenings when I am on the settee, I also bought one of those “snuggles blankets”, they have arms so that you can wrap yourself up well, last winter our electric usage came down a little, but it has to come down a lot more! Looks don’t matter, warmth and money saving does, I know many people who wouldn’t be happy about having to go to these lengths to stay warm but choice just doesn’t come into it any longer.

All these, are the lengths that being disabled in the 21st century involve, it seems so wrong that anyone with enough problems from their health has to worry so much just about what should be a simple thing, staying warm, and I know there are many more out there who are finding it far harder. Adam is working, not for the greatest income, but he does bring home money towards our bills, there are many out there who don’t have anything other than what the state gives them, I truly feel sorry for them.

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.

Crossing a milestone

After yesterdays conversation with the bank I had to make another call and that was to the Doctors about the pain control issue that might occur on Thursday. My own doctor is on holiday so I had to talk to the other partner, I was ready for a struggle but to my total surprise I had no problems at all, there is a prescription on it’s way to me right now for liquid morphine. I am to take my meds as normal but she agreed that there was a real possibility that I would need more pain control as my normal meds might well be flushed out of my body. It was when I came off the phone I found myself feeling really strange about what had just happened. I had gone into the call ready for a fight to get anything, but there wasn’t a second of argument in the whole call, she said yes straight away and was totally helpful. I found it rather upsetting. I wasn’t looking for a fight but it was the fact that she didn’t hesitate and offered a fast action morphine without any thought about it, it was conformation that I didn’t need, I am really ill.

I know that sounds silly but we all kid ourselves when it comes to our own health and someone jumping in and offering me a high level painkilling drug in a form not normally handed out with ease, was like saying your are incredibly ill and you need this now! I like everyone, ill or healthy, live in our own little bubble that is our normality, if my bubble had a label on it saying incredibly ill, I would be acting that way and as you know I don’t. My bubble says, your fine get on with as much life as you can, my bubble was popped, by kindness and honesty! It is not the first time the medics have taken a sharp needle to my health bubble but just as in the past it is difficult to handle because of the past. I spent so many years trying to get a doctor, any doctor, to listen and to understand that I was ill and all dismissed me as a hypochondriac. To find myself being handed without even a seconds hesitation what I need, is still hard to accept and strange to find that doctors don’t only believe me, but are now quick to help me.

If you are an able bodied healthy person you might find my reaction a little odd but it is yet another point in my learning to live this way. I have just had someone confirm I am really ill, when I feel no worse at this second than I did when they said it, and I am fine. It is another milestone, like the day I was told I had to have a wheelchair, a milestone saying you are more ill, than you want to admit. I always thought that people who would be given morphine were near deaths door, then I was given it, but in very controlled measures, now I have been given it with a take as much as you need to get through. When I spoke to Adam about it last night he said the obvious, I am not the patient who calls them every few days demanding things I don’t need. He is right, but I never have been that patient and I have had that treatment. I feel right at this second that some how the NHS are turning my life upside down, all the doctors are listening and they are all trying to help, it all rather odd and difficult to get my head round. What next?

Dealing with buisness

Well this wasn’t the start to the day I had expected. I was woken at 6:10 by Adam doing his pig impressions and gave up trying to either shut him up or of any chance of getting back to sleep, so I got up and started my day. Adam eventually got up and headed of to work and I had my breakfast, so far so good, but then the phone rang and it was one of those horrid automated things, they all seem to have on specialty, confusing me! I knew from experience that as it was Barclays and they were asking about recent transactions that someone was trying to use my card, or at least they thought they were.

I know they do their best to make these systems easy to use and to understand, but I find that my brain goes into a spin, something that it shouldn’t as I was one of the people behind a system like that, who used to record the messages and set up the system to take a caller to the right person, or to simply leave a message of some sort. I more than understand how they work and what the processes are, but with questions that don’t actually make sense to me meant I had to open my statement, making things worse as I was trying to answer the questions on the phone and to log into my account, I had to hang up on the the phone it was just too much. I checked my account at my speed and called back, they were right someone was stealing money from my account. The took £1.60 on the first, £25.80 on the 3rd and according to the phone they were trying to take another £25.80 today. The whole thing was hysterical thinking about it, as the adviser who was trying to help me, had a really broad Asian accent and I was confused before I even tried to work out what he was saying. We got there and I now have a new card on it’s way to me. I am still confused though as I only use my card to make payments to ASDA, I use it as it has this fraud protection, that means to me that ASDA’s security is questionable, rather a surprise for a company that size.

What this morning has shown me is that dealing with companies once you have a problem with communication is really hard. For about 4 years in total I worked as a call center rep and not once was I ever given training with how to handle a call from someone with speech problems. Nor when I was a Operations Manager did I bring in any training for the staff to deal with it either. We all think we know how to talk and how to communicate with someone, but it is a different skill and this morning was proof that it isn’t a universal one. I made it clear to the man at the other end I was having problems understanding as he spoke so quickly, but as most do, he didn’t just slow down, he started to shout! I have noticed that all my life that people shout when someone can’t understand a word, or their accent or even just they way they are saying something, shouting makes no difference at all, it is comprehension not hearing that is the problem.

I actually think that it shouldn’t be something that is taught by business, it should be along with a million other things, be taught by parents and schools. How we react to people can make so much difference, I witnessed from my wheelchair days that people shouted at me then, strange I know as I never thought my ears where in my legs, but apparently they are. If someone was with my they spoke to them and not to me, and always looked at me in a pitying way as thought I had lost my brain along with my mobility. Well world here is a note for the margin of your page on people, disabled doesn’t mean stupid, just different.

Belief in Placebo

I was about to start writing when one of those infomercials appeared, what it was selling really isn’t that important as 100% of the ones I have seen I have never wanted to buy or made me laugh, just as this one did. As once more was for one of those gadgets that no one ever actually needs. You know the type of gadget I am talking about, as like me, I bet you have at least one of them in your cupboards, that miracle item that was going to change your world, then you used half a dozen times and had until now forgotten was actually there. I know for a fact I have a couple at least, and they prove just how well a good sales person can make you buy what you really don’t need. I made a point about 20 years ago to just not look at those glossy little magazines that tempt you with the next great gadget, just as about 8 years ago I stopped reading those article claiming to have the miracle treatment that would cure my MS, the only real difference between the two, was money.

Recently I have come across several telling me that I could be cures and all I had to do was spend a huge amount of money, drink or take some potion and or stick to a diet. I have always been of the view that if there were any truth in their effectiveness, them my doctors would be telling me to take that treatment. I am not saying that some people have been helped but I have always felt there was a large amount of the placebo effect involved in the improvement in their condition. If you are in the UK and reading this you many have like me seen a program on Channel 4 the other week were Derren Brown cured huge groups, with many different conditions, some with complex fears, so bad that they ruled their lives, some with OCD. They were given a blue pill that was simply sugar, being Derren Brown it was all done very convincingly so I could see how these people could have totally taken in the possibility that it would really be helped. It was this group that they followed and all but one, was cured. There were other groups that we found out about near the end, he had also gave the same tablets to them, several had really bad medically diagnosed allergies, all were cured, including a boy with seriously bad dermatitis, he was totally cured as well. The proof of the show to me was that the human brain can have amazing powers that we are just scrapping the surface of, the placebo effect might in itself be a cure for many things.

I am not saying, in case anyone should think so, that we should all run off and pay a huge amount of money to take a quack cure, but my view of them has changed to a small degree. I think that it is possible that if someone believes enough, that they can relieve their symptoms from any condition, I don’t think you could cure cancer or even my MS, but I now see that you may well see a huge improvement, a twist if you like on positive thinking. I can’t help wondering though if like the gadget we think will change our world if the people cured by Derren Brown, in ten years time have forgotten what he did for them and they are back at point A with a cure in a cupboard somewhere forgotten about. I have said many times that self belief plays a huge role in my life and without it, I am sure I would not be as well as I am.

We all know, including the medical world, that placebo’s work, if the person believes for many it will happen, I can’t help wondering if more time was put into helping people deal psychologically with their illness, if the result might be, people who can live a fuller life with what ever their condition is. Hopefully that would also remove the openings for the scammers, the quacks just looking for money, as what they supply is the belief, a psychological crutch. Done properly and there through out the life of the condition, then it hopefully the treatment wouldn’t land up hidden in a cupboard, some might find that that is where their condition actually goes.