Arguments inside

I have been reading through old entries in this blog, it is hard for me to get my head round just how much I have written in one year, mind you if you write everyday if is bound to add up quite quickly. When you sit down everyday with a purpose that says you have to write exactly and truthfully, how you feel and what has happened in the last 24 hours, it may sound either really simple or really difficult. To begin with it was both, but now it is part of my life and like any daily ritual, you do it without a great deal of thought. Luckily it has become one of those rituals like eating, that I actually enjoy. I know I have said it a million times but finding things that you enjoy is really important, yesterdays blog kind of told me that again as I was left thinking about my future and wondering if I should just bit the bullet and try once again to get to grips with the program I have on my PC which allows me just to talk rather than type. I tried a few years ago to get the stupid thing to understand me but I wasn’t getting far, as I don’t know if it is my accent or my stutters and slurs, but what it typed and what I said were totally different things. As much as I love technology I also find it can cause more frustration that it is actually worth. I know that the program I have is several years old now, but it is so hard to find the right one for you without spending huge amounts of money, on something that may not work. I have taken many speech programs over the years on free trial, some on recommendation from others, but with the time it takes to get them to work for me is often longer than the trial. Those restrictions of course grew when I lost my income, so what I have is what I will have to use, like it or not.

There is though for me at least a big block in the way, it’s silly but I expect I am not alone in the fact that I don’t want to set up the things I might need in the future before I really do need it. It is a bit like if I worked on the program so it was perfect for me, it was then an invitation for my hands to stop working. Stupid to the nth degree, admittedly, but I can’t help feeling like that. Right now I could have grab bars around the house, walking frames and so on, all here to help me, but I can manage well enough without them. It isn’t just that I don’t want our home to look like a hospital, it is also that if they were there, I would disintegrate somehow faster than I am already doing. Getting past that has been impossible all the way through, I’m not sure though if it is coming from my pigheaded side or if it is coming out of fear of facing the future. Being an ostrich is all part of being human I suppose, but like the day I had to give in an accept my wheelchair, well it is painful. It’s pain that I can do without.

The other thing that I don’t like and that is what I am doing right now, arguing with myself, that was also what I did on the lead up to my wheelchair. Is this arguing actually all part of my admitting I need more help. By degree over the last couple of months, which I suppose even to the outsider reading between the lines, I have been constantly arguing. I have been slowing bit by bit admitting that I am moving downwards in everything, laying out what has changed and what is getting hard to do. None of my muscles are as strong as they were compared to a few months ago. Right now I can sight a perfect example, I have just been to the kitchen to fill my coke glass and fetch a biscuit as well. Stretching up into the fridge to put a new bottle in place to cool and then stretching the same arm to pick up the pack of biscuits from the cupboard, has left my are exhausted. Add in how my legs feel and I am a mess after one small journey to another room and back. But I am not mentally ready to give in, to admit to myself, far less the medics that I am failing to cope.

I don’t understand why I can write this but not talk about it, putting it down in words anyone can read, is admitting it, but it doesn’t feel that way. I haven’t had that discussion and I don’t really want to, I know 100’s read daily, yet there is still a feeling that this is private, just between you and me, and no one else. I guess that arguing is going to go on a little longer, it’s just my way of settling thoughts in my mind and for now they are anything but.

No pain can be worse than pain.

I woke this morning with something missing, my left foot. It was totally dead to everything, which as you can imagine caused just a few problems with getting out of my bed, it hadn’t just ‘gone to sleep’ as in lacking circulation, it was totally missing as if someone had actually cut them off. This is far from the first time but the scary thing always is will it return, I started by working out if it was just sensation or had I actually lost movement as well, luckily it was just the feeling. Standing up though when you can’t feel the ground is a very strange thing, like trying to drink coffee after being to the dentist. You can’t actually work out where your own body is, you know where it should be but there are no signals to confirm anything. I simply had to trust that it was doing what I asked and quickly as I had to get to the loo, getting across the hall was interesting to say the least, my foot just wasn’t sending back any signals to confirm where it was and as the hall was totally dark I couldn’t actually see anything either. From past events I knew that the danger was I might actually do some damage to my foot, in the past I have pulled muscles, stubbed my toes and caught toe nails in the carpet, pulling my foot free results in breaking the nail beyond the point of comfort. Today I was lucky, I can’t be sure if it was because I forced it to carry me, or it was just luck, but by the time I had been to the loo, my foot returned to normal.

I have been warned constantly by the MS nurses that I have to be careful with my feet, as lose of feeling is a common problem not just for me, but for most people with MS. Just like diabetics, it is easy to have cuts that you don’t feel and can become infected with ease. I have because I insist in walking around with bare feet had issues, but I find that I feel the floor better when I am not wearing shoes. I have lost some feeling permanently already but at a level I can work with. When my left arm died for several months, I had bruises and small cuts all the time, when you have no feeling it is a constant fact that you bang it off things and cuts gain from trying to use it to do everyday things like opening cans and jars. Not having feeling is a huge hazard, not just a disability.

When parts of your body vanish like that it is scary in the first few seconds, as always the worry is that this time it may have gone for ever. I have lost count on the number of times that I have stopped dead and just waited, totally concentrating on the dead area, just praying it will return. I know well the areas that vanish just because they feel like it and I also know that one day they may be gone for ever. I fear the most, understandably the lost of my feet, legs and hands. They daily give me reason to worry as well, for the last few days it has been both of my hands that have been numb and painful, alternatively, so my foot suddenly being gone was rather a surprise this morning. I often find myself sitting wondering how I will manage the day that I no longer have the use of them for ever. I know that I can manage with just one hand, but to loose both is something I just don’t think I could cope with. It’s hard to imagine a world were I can no longer make a coffee, carry a plate or type. It’s a future that I don’t know how well I will cope with, I know it still won’t be the end, but it is so alien that I can’t get my head round it really.

Everyone knows that MS causes pain and as bad and difficult pain is to deal with, in many ways no pain is in many ways worse. It may sound like a blessing that the pain has stopped, but the consequence of that so called blessing is something far worse.

The measurment of now.

Thanks to the responses I had to yesterdays post, which I thank you all for, I have found one constant string from those who are chronically ill, that the thing we all hear constantly is, sorry we can do nothing. I know I am in contact with what is just a tiny sector of people, but if what I am seeing is the bigger picture as well, it is clear that millions must be wasted by hospitals every year, running tests on people like me who know our bodies in detail, as we have to, and know what is wrong with us without all these tests. My story is just one of many, but I am once again in the position where I told them what was wrong and why, all I wanted then and now, is help with dealing with it, yet I have had months of my problems getting worse without any help, as they wanted the results before they tried anything new. It’s nuts! I can’t help but think that there has to be a better way of doing all of this, that will actually help the people who need it, when they need it. Something that maybe all of us should think about, as clearly to me the medics aren’t thinking about at all. The real effect on me mentally is that of being battered and bruised once again by the medics. I have mentioned several times along the way, I really regret letting myself be pushed into the medical world that I had shut out for 5 years. To date all that has been achieved is more pain, more exposure to looks of pity and yet more confirmation that I don’t need, or belong, in the outside world any longer, it just isn’t worth it. The safest, least painful and least exhausting is my home, the home laid out so that I am independent as much as possible within it, something that is impossible outside it, my home is my sanctuary.

Since the other days bad bout it seems to have settled to it’s normal behavior, of discomfort and isolated section of pain for short spells, bearable as they are just that short spells. I can say it has returned to normal as I am noticing my left leg the most again, funny but that is a strange relief. How my life landed up at a point that I would consider a painful leg a blessing, is beyond me, but that is just the way life is. I suppose that is the way I measure things now, a good day is when I have short bouts of pain and constant discomfort, a bad day is when I am in constant acute pain. Every measurement of life changes, I used to measure things by how my life with Adam was and how well my work was going, but illness changes all that. You don’t even notice it happening, it just changes. Suddenly I find that a great achievement is managing to walk from my computer to the kitchen without holding on to the wall all the way there, or making the same journey in less pain than the last visit. Silly small things take over all the old measure, the whole meaning of life changes and what was important vanishes totally off the end of life’s list. I can look back over my life with some pride at what I did achieve along the way, but that is the past and comparisons just don’t exist. Happiness now comes from the smallest thing, the smallest human contact or approving act. I would never have thought that someone retweeting my tweets, would always make me smile, or that checking daily to see if anyone clicked and ad on my blog would become a ritual in my life, just earning a few pennies seems somehow important. To know I have made someone smile because of a picture I posted or that I have opened a door for someone to a world they knew nothing about, all these things have become important and a source of joy.

Someone who is totally able bodied I don’t think can totally understand the mindset change that happens, or how you could possibly be elated just by making it to the loo in time. I know that the me of 20 years ago would have laughed at the thought that that might be my most important achievement in a day. I know now that I can see from both sides, that to truly understand anything you have to live it. But I also believe that it is possible to get an insight, enough of an understanding to know how to react or even act, when faced with an individual who’s life is so different, without gawping or running away. The only way that will happen is if people like me are willing to lay our lives open so that everyone can see it.

The results are in.

Yesterday turned in to a really strange one, one that I had totally not expected when my day began. Just after I had posted my blog the doorbell rang, I was expecting it as it was my fortnightly delivery from ASDA, something that is always the same, fast, simple and provided by helpful and thoughtful drivers, well until yesterday. The delivery person had been here before and he as always been the least chatty and the only one I have totally failed to get a smile from. All the drivers know that I like them to empty the boxes into my hallway, from there I put away the frozen and fridge item, and Adam moves and puts away the heavy items when he gets home. The first boxes arrived at the door and I let him in, to my surprise he dumped the boxes right in the door entrance, then turned to head downstairs, so I asked him to empty it, to which I got a mumbled answer that he would do it once he had all the boxes upstairs. I immediately said that with the boxes there all our heat was being sucked into the outer hall, he shrugged his shoulders and went to get the rest. I have to say that stunned me a little and I said nothing over the next 10 minutes as he piled up all his green plastic crates. Eventually he started to unpack and his first move was to put a bottle of coke right in front to the hall heater, our only heater and extremely hot as it heat the whole house. I pointed out that it would explode so he picked it up and dropped it heavily clear of the heater. I was stood the by the kitchen door as he slowly boxed me into my corner, I wasn’t really thinking about it by that point as my shopping was flung around my hallway. He handed my his little black box to sign for delivery then started to grab his crates, I then spotted I couldn’t get past all the shopping and I started to ask him to move some but he was on his way out and he wasn’t coming back. I managed to move slightly a couple of things so I could step over the rest and get back to the living room.

Adam called as he always does at 1pm and I asked him to come down to the house and move it all as I couldn’t get to the kitchen or the bathroom. He was here in minutes as the Hospital is just up the road and before moving everything he took a photo as I intended to email ASDA’s about it as I find it hard to think that they would see this as service of any level. While he was here he told me that he had spoken to my consultants secretary, he sees her almost daily as part of his work, she told him that she at last had the results which had been the hold up. Of course couldn’t tell him anything, but she offered to speak to me if I called her that afternoon. As he hadn’t expected to be coming down to the house, he had left her number at his desk so he called me once he returned after his lunch hour. I often find that Adam’s ideas of what all these tests and visits to the hospital are at odds with the reason I believe that I am attending these appointments. If you read back in here the whole thing started because basically my digestive system has given up. I am digesting food but not all of everything, and unless my bowels are full and I eat more, nothing moves through me, I guts seem to be working on a overflow system rather than the normal daily finished and get rid off action of a healthy bowel. My GP, the continence Nurses and the district nurse had all failed to get things under control, so I was sent to see the Gastro team to see if they could help. The test they did were more about ruling out, rather than looking for, if everything was clear then the real point of being there would begin, the real point being to get control again in anyway that is possible. Adam on the other hand didn’t seem to see any point in going back if there is no cancer or growth or anything else they can operate on. From the start I have said that the problem is my MS and nothing else, so we are approaching the whole thing from different angles.

Once I had the phone number I called secretary, she had just written me a letter and she read it to me, it was exactly what I had expected. All my results were clear and there are no sign of any other condition, in their opinion all of problems are down to my MS and they will be sending me out an appointment to return to the hospital to discuss what if anything they can do. The wording did come across to me as them once again saying they couldn’t really help. Adam and I discussed it again when he came home from work and yet again we were still at odds with the purpose. Adam seems to feel that it should now be all handed over to the Pain Clinic, I see that to a point but it isn’t just pain, there is so much more to it than just that. I am hoping that they will know of some drugs that might control my bowel actions, including the diarrhea and incontinence, drugs specially designed for that purpose, also with it being their specialist area, they may well know of a drug that is more effective on controlling spasms in the intestine and therefore the pain. In fact I feel the next appointment is actually what the first appointment should have been, I have always said it is my MS, the Nurses all believed it is my MS and now the hospital does as well, with us all in agreement, maybe now, nearly 10 months, on the things I at first asked help with can really be discussed. I suppose I also have to ask them what to watch out for with my newly discovered Gallstones, well as we know pain is a difficult thing, if they manage to reduce my pain levels with stronger of different drugs, how am I supposed to know if they are causing huge problems, if I can’t feel them as others would. I know from the last visit that they aren’t going to operate as I expected, I am not a great candidate for going under the knife. So now I wait, not for the letter to arrive as I know what it says, but for the next appointment to be sent out to me, I would prefer that I see them before the Pain Clinic on the 8th, which is unlikely, but we will see.

Last night was another night that I went to my bed and cried. It was mainly the tensions of the day, but I now had the words that I suppose even I had that tiny hope wouldn’t be the answer, that once again this is something else I just have to live with, from here on in I can look forward to more pain, more discomfort and another thing that is on my list of “Sorry we can do nothing”, it’s a list that never seems to get shorter, just longer and longer.

Spin off

Yesterday I had no choice in what I wanted to write about, when pain engulfs you like that there is no way to make you brain think of anything else. It is like you have moved into a bubble that excludes you from the rest of the world, even from the room you are sat in, and there you sit until it lets you go. Although my morning was terrible, but by the afternoon it had eased and although I had no strength or energy I was just so pleased that I could actually do the simplest things like breath without pain. I didn’t get all they way through the day without it as a milder period appeared at about 8:30, this time it started on my left side just below my ribs, being so tired I just went to bed with my blanket switched on. I lay there allowing the warmth to soak through me, I do find that it sometimes helps just as it did years ago with period pains. The good news is so far today there has been no pain! I made sure that my portion of porridge was on the small side, not tiny or anything silly like that but smaller than yesterday. I don’t know if it makes a difference but anything is worth a try. There is one thing that I can never get my head around and that is how can I be on such high doses of morphine, antispasmodics and nerve calming drugs and I can still be in that much pain? I really would have put it at around level 7 and 9 as there where peaks, the don’t last long and settle down quickly.

What I didn’t write about yesterday is what that pain does to everything else, like a lot of things they seem to trigger each other. As an example my balance was effected and walking was more interesting shall we say. I found that I was holding onto more things and being extremely careful when I had to cross and area where there was nothing to hold on to. Simple things like changing direction, become danger zones, you have to think about what you are doing and how you are doing it. The fatigue also travels through areas where there are no spasms. Apart from my balance being more out of line than normal, I also have to contend with the my leg muscles being heavy and sluggish, faster to tire and cooperating less and less in the process of getting me around. When typing I had to keep stopping and starting, as the muscles in my forearms just gave up, they don’t want to support or allow the movement of my hands and figures, so they gave in and stopped, forcing me to rest and wait until they were ready for the next few sentences. Sentences where another more than normal thing to deal with, clearly I was distracted by the pain and trying to write my other blog was impossible, I couldn’t make myself think of anything else but how my body was, there was an imagination and descriptive block, even on this blog I was very aware that the flow and the whole process wasn’t anywhere near normal.

We all know when you are ill that your whole body takes the toll, having a really bad cold can cause you to ache all over, well there is no difference when you have MS, something being wrong in one area, pulls down and upsets others. It is easy to look at the list of symptoms and see them as isolated, that you will have them at some point, on some occasions a few at a time, but the truth is you can have all of them and more. Yes I do mean more, not everything that happens are on those lists and by writing and others reading, I have that proof as I am constantly being told “I have that too”. Most who say that to me are relieved as they were wondering around thinking it was just them or it was something else, a new illness that they haven’t so far been diagnosed with. Well if you have MS, Fibro and all the other named conditions I have relax it isn’t just you!