Pain right NOW!

I have been trying to write my other blog for the last hour and a bit and I am getting nowhere with it at all because I am in pain and discomfort that won’t let me think of anything else than it. So I have given up and I am letting it have it’s way I will write about it instead. I know my writing isn’t as fluid and descriptive as usual so please bare with me, but this is real time pain, not last nights and real time is hard to work with. It started about 2 hours ago I had eaten my breakfast as usual, but just like dinner last night I couldn’t finish it and I had been forcing myself to eat as much as I did, last night there was no price to pay, but this morning, there clearly is. I’m not sure exactly what it is as it has just spread and spread, I have never had to date spasms that spread and effect more and more areas. At first it was pain in the center below my breast bone and the pressure feeling that I often have. In a short time I had to go to the loo, the normal push it through that I have been living with for ages, then again, and then the pain rocketed. That is the opposite of normal, clearly making space normally ease things, but not today, the pain just got worse and worse.

It was moving and spreading, not reducing as it should, right up the right hand side of my chest into my armpit and nothing seemed to easy it. I tried lying down and walking around but it it just kept getting tighter and tighter in the middle and a spread pain grew with it. Sat back here at my PC I was breaking out in a sweat and I was beginning to feel sick. As I said I was trying to write but I just couldn’t keep my mind on what I was doing pain just over rid everything and my concentration was completely gone, not to surprisingly. Once again my breathing had to be controlled as a shallow level as deep breaths caused more pain, which by then was also working it’s way down through my gut, from breast bone to pelvic bone I had large areas in spasm and everything around them was blanketed by an increasing ache. It was like a cascade, bit by bit not just in the front of my body but through to the back, then suddenly it started to ease and pulled slowly back to just the upper area of my abdomen. It was almost as thought it had no further that it could go, so it gave up, I’m sure that had nothing to do with it.

It’s an hour since I started trying to write this, now it is just the center area, my stomach and below basically and as always it is through to my back, no heartburn, no reflux nothing, just incredible pain in my gut. Every time this happens it is worse than the time before, but still no appointment from the hospital and no idea what the cause is. I can really see no other reason other than my MS, as this feels so like spasms and they seem to spread, that is something I don’t understand. After three hours of pain that although I have my full amount of medication levels is still really bad. How can I be so drugged up to deal with pain and still feel this the way I do? At least now it is fading, but as always it is leaving behind a feeling of being bruised, almost as though I have just been in a fight or something. It isn’t just the pain though, that is just part of it, but that type and level of pain drains you, I am now once again feeling exhausted for what and why? This on top of everything else clearly takes it’s toll, my body is permanently battered, but there is a limit to what it can take at any one time. So all of this is written down and hopefully when I do get to see the doctor it will make more sense to them than it does to me, but I am really now thinking that they are at the end of what test they can do and they really will tick the box of MS, not much help to me unless they come up with a painkiller that will mean I don’t feel it.

Sharpening the focus

A bit of an unexpected early start this morning so I will probably allow myself some extra time asleep this afternoon as I lost an hour, just one of those things nothing dramatic. It is actually kind of nice to be looking at the clock and seeing how far ahead of my normal timings I am, a fall back to my years of working, I always loved having all my morning report for the company finished a head of time as it gave me a boost for the rest of the day. I remembered yesterday to turn up the heating before I went to bed, as the forecast is on the interesting side for the next few days. Not intentionally nearly all my homes bar two have had storage heaters, and although you have to work 24 hrs ahead when it comes to the temperature you want your home, I love them. Our flat isn’t that big but with it being Victorian we have wonderful high ceilings, so a lot of the heat goes upwards and settles there, but I don’t know many people these days who could heat all of their home from one heater and who’s fuel bills are under £70 per month for everything. I actually expect our payments to go down soon as I have cut the heat a lot this year, but we will see.

I have those stupid nerve pains shooting through my head again this morning, they are really annoying beyond the actual pain levels. They fire like lighting bolts and make you jump and cringe, not advisable as a smoker as I have sent a couple of cigarettes flying already this morning. They also have a habit of causing a shiver like sensation down my spine so they aren’t confined to my skull and inwards, other than that, it is a reasonably average day health wise, so a smaller tick than yesterday but still a tick. I think I really need to call the opticians for another home visit as I am noticing more and more that my vision is blurred again, even with my glasses on. I really would like a pair that helped me here at my computer, as at time it is hard to see clearly what I have just written, I have tried increasing the font size and magnification but even then there is still this fuzziness that I would like to be without.

I stood on the scales again this morning as I haven’t done so for a few weeks and despite the extra really rich foods we all eat over Christmas I am still loosing weight. Slow and gradual and totally unexplainable, and still totally welcome. My food intake as far as calories go hasn’t really changed, so finding that my weight is going down is a little odd, but not worrying. Anyone who has limited mobility will tell you that just like me on goes the weight, the ultimate proof to all those out there wanting to loose weight, that cutting down your food isn’t the answer alone, you really do have to do more as well. Since my weight started going on I have been on an almost constant diet, staying away from all the things I shouldn’t eat. But no matter how I restricted the intake, it kept going on, until now. I am still waiting for my return appointment to go back to the hospital for a follow up on what the problem with my gut is, I know I will be weighed there so I will add this drop onto my list of odd things that are still happening. All the other strange symptoms of pressure, discomfort and pain are all still as they were, I have now been living with it all for about 10 months. I did think I would have heard before now, but we all know the waiting game with the NHS all to well.

Everything in slow

Another night of lying in my bed wondering why I had eaten what I did earlier that day, this time it was my right side not my left, but it was that which made me find something odd. I laid my hand on both sides to work out if the pain was an exact mirror image of the day before, it wasn’t, but it was then that I found that my left side was still sore to the touch, as though it is bruised internally. I have checked both sides this morning and both now have the same to the touch bruised sensation. This to me is the first clear sign that what ever is wrong with my gut, it has to be my MS, as this is exactly what happens with bad muscle spasms anywhere else in my body. I have had muscle cramps in my stomach before like anyone else gets, but a spasm is different from a cramp, as it can’t be released until it wants to let go, if you rub a cramp or make the muscles around them move, usually the muscle relaxes, spasms won’t relax until they are ready, there is nothing that makes them release. The pain in the last couple of nights didn’t respond to massage or stretching, not even to my favorite release of pushing my fingers deep in to the muscle, or anything else. The pain was intense and it has left it’s shadow along with I guess internal bruising. The messages that should make my gut work, have been screwed up for nearly a year now and this seems to be the next step, crazy spasms that just lock and grip allowing nothing to move at all. Anther part of the puzzle I suppose and something to report when I eventually get the appointment back at the hospital.

This morning is like every morning just after Christmas, some what flat and some what dull in it feeling. Adam is working as he would on any Thursday so I suppose that is all part of the dead feeling in the house. It used to be the dead end of the month even more as there was that knowledge that soon the decorations would be down and the house would look as dull as it feels, at least there is none of that feeling as no decorations went up. It’s strange how the memory of feelings stay with us regardless if we change the reality, no decorations to go, but still I feel the house will be duller, less alive and less electric for another year. I am not sure about the condition called “SAD”, if it were fact I should be in deep depression as I haven’t been out in daylight for nearly six years, but I do believe in the fact that after all the excitement of Christmas, we all feel down in late December early January.

I am looking forward to being able to get my sleep pattern back in order, just going to bed late on a couple of nights seems to have knocked me, you would think that I have been staying up until after midnight, not to just after 10 o’clock. I always believed that the older you get the less you need to sleep but mind you I hadn’t added in the extra’s that I have, maybe it is normal for some one like me. I am finding it moving more and more onto my list of life’s frustrations, I have so much that I want to do each day but my time to do it in gets less and less. The more that I add to my life, the more it seems that my life tries to take it away, I don’t have the energy that I had even one year ago. I am slowing down in everything, from my energy levels to my thinking speed and my actions. The more tired I get the slower I walk and the slower I live. I can only wonder what the next 12 months holds for me and how I will be in December 2013.

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.