Just life

For those that don’t live with an illness that slowly destroys more and more of your body, I know it must be really hard to imagine the truth of our lives and how we even manage to keep going. I know because Adam has said it over and over again that he just doesn’t know how I keep going and I guess that to many it must appear that we are living in an unpredictable nightmare. It is just as hard for me to imagine a life without it, my life has been this way for 30 yrs, I have no memory of a how it was to live without pain, or exhaustion, or without any of the other monsters that nightmares bring, I wish I could but those memories are no longer there. I guess that really is the simplest explanation there is, this is normal, everyday, nothing that I haven’t done before, it is quiet simply my life as it always has been. Yes thing have become worse, and new things have appeared but without even meaning to you just sweep them and embrace them along with everything else you live with, just as everyone does with all that old age brings their way, they all become your life. That doesn’t mean that I am no longer surprised by or distressed by the things my body gets up to, but I have learned that all I can do is accept it and wait for the next new trick.

It doesn’t take a Mensa IQ to work out that pain and memory problems are the worst and most distressing, but there are still times when I find myself, if you like playing with the strange sensations that I live with. There are hours and hours of amusement to be had from a body that thinks up new games to be played, for playing predict the next spot with slow motion pins and needles, to trying to trigger again that strange sensation that just happened a minute before, or finding a way round yet another problem your body has created. Last night I found myself lying in bed and suddenly being shocked by my right arm, it didn’t feel any different from any of the rest of me until I brought it firmly against my side and suddenly it was on fire where ever there was skin to skin contact. Separating them again instantly stopped it and no matter how I tried pressing my arm on the mattress nothing happened, return it to skin contact by my side or laid across my stomach and once again the fire returned, of course today, well yes it has once again gone. Oddities like that happen almost daily, if you seriously tried to find the reason behind it you would drive yourself mad, because there is no logic. Knowing the medical definition of what is happening doesn’t help at all, you can’t see the covering of your nerves, so the fact it is being eaten away isn’t really that much of a help, especially as it will play with one nerve, get fed up and move on to a different one. Nerves can spark and fire off for seconds or hours, they can cause anything from total numbness through to eye-watering pain and beyond. Tiny areas or entire limbs can be lost to them, what ever they choose to do, happens, just as it has been from the very first one so far back, that you can’t remember it.

I remember being accused of being melodramatic, of complaining about nothing as nobody could possibly have the catalogue of things I was saying was wrong with me, but I knew that it was real, all to real and that was in my early twenties. Finding myself in my 50’s is more surprising than anything else, as I honestly believed that my body wasn’t going to make it and then someone would have to believe that I wasn’t well, a medical diagnosis did that instead. I can’t remember a body that wasn’t filled with stupid pains and daft sensations as I said this has been my life for as long as I remember. Right now I want you to sit totally still and work from your feet to head, make a mental note of everything you can feel, as in sensations and pain. For me the soles of both feet are on fire and there is a constant triggering spasm on my left calf and shin, the pain from it is travelling straight through my knee, where I don’t know what is happening but it works as an amplifier up to my thigh and in to my hip. My backside hurts as well but that is a side effect not my health, around waist level there is a twitch that makes the entire upper half of my body twitch and move about as it doesn’t know how to stay still. Both my hands are now in constant pain, depending on position and activity, but sitting still, well they just plain hurt, my right thumb seems to be the start point of a pain that travels right up the side of my arm to my shoulder and then on to just beside my ear, make sense of that one! My diaphragm is tight and there is pain right across my front, with an MS hug in the lower 3 ribs on the right, there is also pain travelling from the side of my breast up into my arm pit. My face is covered as always with a light pins and needles sensation, one that all to often makes me scratch at, awake or asleep, but sleep often leaves tracks and occasionally scars as well. My left eye and cheek have one of there favourite things going on, a feeling as though they have slipped on my face and are just hanging there. How does that compare with what you feel right now? That is my normal, it varies on what it is doing, but it is always doing something, there is never just nothing, never pain free, never sensation free, never just free at all.

So how do I live with this, how do I not? It is as daft as asking someone who was born without legs, if they miss being able to walk, they don’t know as they have never done it, I don’t know life without all the conditions that now live with me. This all of it is quite simply my life.

So where am I

There was no catching up for me yesterday, I knew before I went to bed for my nap that I was already a couple of hours behind, no matter what I tried the time just kept slipping away. I am already over an hour behind today, I know I have an increased number of tweets to get through at the minute but not enough to mean I just can’t keep up. I made sure I slept a little longer yesterday afternoon then blew it by sitting here until 6pm catching up and then staying up late in the hope I could see the end of a movie, I failed, I landed up missing the last 40 minutes, I often think that I will miss the end of everything for the rest of my life. I said it several days ago but something has to give and I need to sort out new ways of doing things, otherwise I will be doing nothing but destroying the health I actually still have. I know that a lot of the time I am loosing just now is due to just drifting off in to nowhere suddenly realising and pulling myself back to the job in hand. I don’t seem to be thinking about anything of any importance, just rubbish from my past and thoughts of the last few days. Families really know how to take over your mind, I guess if you see them all the time their impact isn’t the same, but when it is months or years without seeing each other, well they open up so much and add things that were never expected, all in minutes not weeks and days.

Years ago the last few days would have had no impact on me at all, I would have dealt with it instantly but when your mind no longer works in a way that lets anything happen as it did, well it’s hard. I am used to the fact that the damage done to my brain screw up all emotions, the tears of Christmas were nothing more than emotions that didn’t know where to go, it takes me time to understand what is happening, just as I drop in to total terror when things are moved around in my environment, I fall into an emotional mess when too much strain is being put on them. I had the joy of my daughter and here husband, the pressure of making things right for them, the fear of what had possibly happened to my mother and the fact it was Christmas, it’s no wonder I lost control of that emotional tornado. In fact I thinking about it I was lucky that it wasn’t worse than it was. I know because we have spoken about it that is one of the things that Adam tries really hard to ensure has a limited impact on me, he know all to well that I can disappear in to total fear, really terrified over things other wouldn’t even notice and he tries to limit any chance of it happening.

When my brain flies off into terror mode it does the most amazingly stupid things mainly because it drains me of energy, as a side effect I become more tired and I have to live with more pain. It’s like living on a helter-skelter, twisting and turning at speed and no control to rectify any of it. I guess that my inability to keep my life running at it’s usual speed is probably just another part of it, just as the slipping off into the spaces between fantasy and reality, even the increase of pain are all just part of the same thing, the simple fact I don’t deal well with change, even when that change is enjoyable, I can’t react to it correctly any longer. When your brain is slowly changing it’s really hard to explain it to myself, far less explaining it to others, the connections keep changing cutting out chunks of the past, while making it harder and harder to talk about the present. Brains don’t do what you want them to when you don’t have an illness that has chosen to eat away at it. I know that I have to face up to talking to my brother and to finding out calmly, if possible, what the exact truth is behind my mother being in hospital and who exactly chose to not tell me about it. Maybe tonight, as today allows me the last opportunity to not sound as though I have been waiting in anger to not call at all.

Adam went for one of his walks the other day and he remembered what I had said the other day about needing him to help me be organised, I just can’t do it on my own any longer, nothing happens around me, no matter how many times I think about it or decide it has to be done, it just all remains the same. He had been to the chemists and brought home with him some emery boards, something I have been meaning to buy now for a couple of months, as the chiropodist has said I should use them a couple of times a week just to help keep the layers down along with the length. I tried them today, but it really isn’t easy as I just can’t reach that well, but if I do what I can every few days hopefully they will not grow to much before her next visit in March. I am really glad that he is starting to take me in hand, it’s all just another side of what I my brain has decided to do, or not do. How can you live your life doing nothing yet believing everything is in hand?

For now all I know is that I am once more sitting here with pain where pain always is, everywhere, but for once there is a numbness over them, not taking them away but dulling what I know is truly there. I’m showered with clean hair and yes once again with a desire to sleep, but I’m waiting as I know that in an hour the front door will open and I will have half an hour of company before he once again returns to work. It’s going to be a mixed up week, days off, days at work and a weekend before normality returns and possibly I will all so find it.


It’s one of those strange days, one where I know what I should be doing and I really don’t feel I have the energy or need to actually even start on any of them. I’m drained, quiet simply the past week has taken away my energy and probably a lot more as well. I have never been the type of person to lie around in bed when not asleep but that is what I want to do, just lie there and let the time and day pass without having to be part of it. I half woke this morning before the alarm went off and felt straight away a desire to stop it from sounding so I could claim that it had failed, as if lying to myself would work, as I would be the only one angry with me for failing to start the day on cue. I know it is always me who puts pressure on me to do anything but I have been like that all my life and I doubt if I will ever change now. It’s mad the things that we put on ourselves, the rules, regulations and small details that are more than just habit that make our lives what they are. If you think about it, there really is no one other than you, who makes you do most of what you do every day, that’s excluding work. Actually I will take that back, we all could become self surficent and give up using all the modern day gadgets, but that just won’t happen. I never gave a thought to the simple life when I was fit and young enough to have actually live that lifestyle, but now, well yes you guessed it, I wish more than anything that I could now just do it, but keeping electricity and my PC, but the rest can go. We all thought do make the rules to our lives and they really aren’t always the best, why can’t I actually now start breaking those rules and just live the way my body want’s to? Simple, because I can’t let go of the idea that routine is essential, I guess there will always be two view on that one.

Again last night I pushed myself to stay up far later than I should, probably part of the reason I feel the way I do today, but I just wanted to stay up, to be a normal person for just a few hours, I guess I will never really learn. I found myself lying in bed yet again with so much pain raging round my body and knowing it was all my own fault, I am in this mess because I have quite simply been doing far to much. Now this is where my argument has been leading, the good of routine is my belief, but once broken what is the best way to heal the mess you have made yourself? There are only two choices push yourself hard to return to your routine, or let yourself sleep as much as you need, despite the fact that is screwing up your routine even further, but may let you hopefully find the energy you need? In the past I have tried both and I honestly don’t know which is better, other than I now always somehow land up choosing the routine angle with a twist, which I guess is the proof it works best for me. I already sleep during the day as well as at night anyway, my only concession to being zombified is a longer afternoon nap and an earlier giving up point at night, but still making sure to do everything I have to do in a day. I often wonder if I were a drill Sargent in a previous life as I just can’t break the rules my life has to be lived by, yes my rules, but break any and I land up punishing myself for it and my health punishes me ever further.

Despite the pitfalls of modern life, the visitor, the meals that have to be cooked or the drama of Christmas letters, like it or not it is actually always your health that is going to make you pay for not doing today what you are allowed to do every other day. Sat here twitching as my core balance has gone, fighting with fingers that have forgotten how to type and a mind that wants to just be left alone, not to mention a pair of lungs that have taken total exception to just breathing without pain, I am doing fine. Christmas is something I am going to mentally ban next year, I have tired ignoring it and that hasn’t worked, so banning even the mention of it may be the answer. As for my brother, well no I haven’t phoned him to thank him for the cheque, although I know I should, but I am waiting until I am able to speak with out anger pouring out at him. I have thought it through in almost every angle but I can’t find one that doesn’t make me want to scream at him about his strange logic of not worrying me about the fact my mother has been in hospital for six months. I can get a way with it until Monday evening, as well the postman didn’t deliver it until then did they, but that’s probably the wrong way to handle it and I should swallow my anger and just make the call, easily said but in reality rather a hard thing to do. I shall see how I feel when I get out of bed later and yes I do know the anger eating away at me isn’t making my body run riot, but not everything has a logical answer that is humanly possible.

Painful answers

Yesterday brought Teressa and John here for the afternoon and loads of explanations to the past week. When the doorbell rang I had to unlock the storm-doors for them and as I was turning the key I spotted a letter had been delivered, well a card with inside it two cheques and a letter, here at last was the explanation as to what was happening in Aberdeen. The card was from my mother and the letter from my brother, I wish I had checked if there was any post when the postman rang for me to let him into the close, but I forgot as I usually do. If I had just checked I would have had the time to read properly and to absorb what it said, rather than a quick scan as I tried to make the coffee. Although I had tried on Christmas day to phone I had had no reply from either Mums phone or Brian’s and I had actually tried again just before Teressa and John arrived but without answer or even an answer machine. It wasn’t until today that I was really fit to take the time needed to sort out in my head what had happened and what my feelings were about the whole situation. Apparently Mum fell in July and broke one hip and fractured a bone in her other leg, she has been in hospital ever since. According to the letter she has had an operations on both but has totally lost her confidence in doing anything for herself and has had to accept that going back to her home will never happen. She is now in the city hospital waiting for a place to come free at a nursing home they have chosen for her, as the waiting list is long. Although her body is now failing her he has said that she is fine in herself, but the killer line was that they felt it was better not to worry me with this information.

I didn’t cry at all yesterday after I had read the letter and at last knew what had happened to her, although I couldn’t in my mind connect my tears to the disappearance of my mother and all the scenario’s that my mind had come up with, I am beginning to think that was the catalyst. I know that my relation ship with my mother isn’t and never has been great, but there has always been that acknowledgement to the roles we play in each others lives, an acknowledgement that included the Christmas order of cards, gifts and phone calls. I honestly didn’t realise just how much that actually really meant to me, but I do know that from the second week of December I was very aware of things just not being right. The tears are gone but they have been replaced with anger at my brother, I can’t help feeling how dare he and my sister take it upon themselves to decide what I need and don’t need to know. When my father died I though that Brain and I had come to an understanding about the rest of the family, as he is usually in almost the same position as I am when it comes to contact, although he is much closer to my Mother, so for him to not phone me hurts. I didn’t call him yesterday to thank him for the cheque or to find out the details as I wanted to enjoy my time with my family as it was truly limited as today they are heading back down south.

Like most visits most of it was spent just sitting talking but we had a strange session of Teressa sitting in my bedroom trying on my boots to see if they would fit her as I have 5 pairs of almost never worn thigh high sued boots. Unfortunately they just didn’t fit her, for a start with her hight they where just knee high on her and although she swore we were the same size all of them nipped her toes. Adam manage to arrive home at the time he predicted and we between us managed to make a dinner of “Stovies” which went down well despite they all claimed to have never had them before, but other than John I knew I had cooked it for them several times. It’s strange just how much rubbish you can come up with to talk about and how fast and easily the time passed, but I was by around 6 o’clock paying for it all big time. I just couldn’t sit in comfort and the spasms I was having in my back, above and below my waist, were driving me mad, I desperately didn’t want to take my morphine as I didn’t want the risk of it putting me to sleep on top of the gin we had already been drinking. So I found myself either sitting with my hands behind me and my knuckles sticking into my flesh so they could apply pressure on the worst spots, or hunched forward over my knees, trying to stretch the spasm away. Adam kept asking if I was OK, one of those questions I didn’t think needed to be asked as clearly I wasn’t, maybe that is a bit unfair on him, I know he was just concerned.

I knew that I should have gone to bed as soon as they left, but I just wanted to sit for a while, to have just that small amount of time with Adam before I vanished for the night. So I sat there still in pain watching a program that if I am honest was more just there than something I was taking in. My thoughts were locked on that letter and the bits I had scanned in the afternoon, I don’t know why I didn’t read it fully once it was just the pair of us, but I didn’t want to, I wanted to stay as far from it as I could, I was also more in need of settling my physical pain before I ventured into what might be a mental on. So I have read it again and I have now written about it, but still I can’t make any logical sense of it, it just doesn’t add up. I can’t do anything about it, it is just the way it is, but I do need at some point to speak to Brian and find out what he is up to and yes to thank him for his cheque.

One more tear and more to come

It seems that life is set to keep you guessing and to confuse you constantly, I still haven’t the slightest idea what is up with me, all I do know is that I really am not myself. Yesterday the tears didn’t flow unstopped but still when they felt like it they appeared, today they are rarer still, but tears or not something is clearly wrong with me. Adam too knows that tears or not things are wrong, he says it is showing all the time, just sitting watching TV he says I am not myself, he sees it, I feel it. I am honestly not depressed in any way, it is more subtle than that, more a feeling like I am on a totally flat line, no ups, no downs just a constant same. Yes I am still laughing and yes I cried at the right spots in all the programs over Christmas that went out of their way to pull at your heart strings, but other than that I am strangely calm and totally levelled out about everything. I didn’t even get wound up yesterday when dinner went slightly wrong, I just happened and that was that, odd for me these days as the smallest things usually receive and exaggerated reaction, that’s just the damage I live with. Something isn’t right and for both of us to see it so clearly, well it has to be something of more than just note. Like everything in my life these days I guess it just has to be a sit back and wait situation, as I guess only time will tell.

Teressa and John are due back here today, I am actually just waiting for the phone to go and to here that they are on their way. One difference between Teressa and I is that she is more than happy to just lie in her bed and lie a bit more. I on the other hand just have to get up as soon as my body tells me I am awake, this morning was another where the pain over my right kidney woke me, I couldn’t get out of bed either as for the first time in ages, the elevator was stuck again. It took a lot of effort and a lot of pain before I was actually sitting on the edge of the bed, by which point I needed to run, well as close to run as is possible to get to the loo. It was an awaking that meant I was then up for the day, at first I headed for the kitchen as Adam was asleep in the living room but I was just to uncomfortable sitting on the perching stool so I entered the living room as quietly as I could, but not quietly enough. After I went to bed last night Adam had taken my three piles and I do mean piles, of documents and sorted them out, my waking him was his cue to let me know with pride what he had managed to do. I have to admit I was a little sceptical when he first offered to do it, as well the kitchen table is usually covered with quantities far larger than I had, but of the same type of stuff belonging to him, I had feared mine would just be blended into his and would stay there for ever. I apologise. All that is left to do is pick out the thing he didn’t know what to do with and it’s gone, all he has to do now, is his own.

I feel like I am in a total mess this morning but I am really just not up to spending time in the shower washing my hair and so on, it is just too much. I know I should be making an effort but I just don’t have the energy, I am very much in the mood to just be what I am today. I guess that Teressa and John are going to seem me as myself today rather than the tidied up and brighter side they saw earlier in the week. I went into cover up mode then, but I honestly don’t have the energy to do anything other than be myself, no matter how much of a mess I might appear to be in, there isn’t an alternative just around the corner. I am actually glad that Adam phoned a few minutes ago to tell me that I he was working through lunch and would be home just after 4 pm. I don’t know if he heard it but the relief I felt, was huge when I heard that. Another confirmation that tells me I am not right, why do I feel I need him here simply because my daughter is coming to see me? If there were one person in this universe other than Adam that I should feel at ease with is Teressa, yet here I am wanting him here with me, why? At this second I want to go to my bed and hide because I don’t have a clue what is going on, bed has always been my hidey hole, the place I run to when I just don’t know what is happening, it gives me the silence and comfort to just be able to think things through. Night time is not the time to do it as sleep takes control far to quickly and I need time, I guess it will just have to wait.