In harmony with ourselves

The second I stop moving, almost my entire right side starts going numb. Stay still for a few minute, and a gnawing cold settles on my skin and starts heading for my bones. The secret that I have to keep reminding myself about is to not sit still. As long as there is even a vibration traveling through me, it stays below my sensation levels, remove it and the cycle begins. It’s been happening in my legs several months ago now, the right worse than the left, and as I reported the other day, the lower half of both legs, appears to be numb most of the time now. When it began, it began just as is now happening in other locations as well. Stay still, and a small area about the size of a 10 pence piece would vanish into numbness, slow it would intensify and if I didn’t stop it there, it slowly spread out to take over my entire lower leg. Over the space of several weeks, it became stronger I suppose, as it didn’t need me to be still all over, just still in that limb, and it’s strength kept growing. Now I have no control over it what so ever, I could get up and dance, and it would stay numb. Once the nerves start the process, it continues until it chooses to leave, or I go to sleep. That, though, isn’t always an answer, I often wake now, with my entire leg numb.

Almost always, it started on the outer edge of my calf muscle and spreading from there, until it encompasses my entire calf. Within a few weeks, the same story was true of my thigh, but there were two trigger points, on one the upper surface of my knee and the other on the outer edge of my thigh. Just like my lower leg, at first, I could distract it, and it would retreat, now movement doesn’t work. Together they are like some sort growing web, spreading over my skin, reaching out for each other. I wasn’t that bothered about it, at first, as like anyone with any form of MS will tell you, numbness is normal. In fact, MS has a trick I haven’t heard of from any other condition, other than those that do major nerve damage, you can be numb and in pain, at the exact same second. We all go through odd phases, where something like this will just run rampant, driving you mad, then one day you wake and it’s gone. I don’t think that over the years, there is a single inch of me that hasn’t been numb at some point. A few weeks with numb legs, so what! Then it suddenly also appeared in the outer edge on the right side of my ribcage, followed a couple of days later, on the right side of my face, then my right arm. I have no located about 14 different points where this spreading numbness can and does appear. Sometimes it just spreads locally and goes, others it keeps growing until it meets up with a neighbour. It feels like my entire right side is slowly turning to wood, as this numbness could also be described as a sensation of my skin and a couple of inches below it, solidifying.

I can’t be sure, but if it is just the dropping temperatures and that the numb areas are hyper sensitive to it, or if it is just another screwed up sensation, but any area that starts to go numb, now also feels as though shards of ice have been shoved into it. The intense cold is at times painful, as I said, numb and pain, are totally possible in the same place. It may seem odd, but I am far more bothered by the cold than I am, by the numbness or even the odd solidifying sensation. I hate being cold and as it doesn’t matter how many layers I put on, or even if I sit right in front of the fire, this cold goes deep inside and it doesn’t thaw. Again, I have been attacked by penetrating cold in the past, but then it was in tiny areas, just half a hand, or a small area or my face or foot, but two nights ago, about a third of one side was frozen to the core. Sometimes, it can really feel as though your body is out to drive you as mad as possible. That it seeks out, the things that you hate the most, then works on finding ways of putting you through, just that exact thing. I have spent many summers cursing because, I can’t find relief from the heat, something I know many will be able to empathise with. This is just as bad and in some ways, worse. Our bodies are self-programmed to run from the cold, we know how easily it can kill and how important being warm really is. You can’t run, from what doesn’t really exist. You can’t compensate for it, cure it or even change it. Your body is locked in a discomfort so intense and you’re totally powerless. I know it’s not that long ago that I wrote about how disturbing losing my calf and foot was, now I don’t just lose it, it then, throws in cold to make sure I haven’t somehow noticed its oh so clever trick.

Last night, it even managed to stop me from going to sleep. I had woken in the wee hours of the morning, desperate to go to the loo. My first steps were somewhat faltering, as standing on a foot that is busy telling you, it’s not quite there, isn’t that easy, but compared to going to sleep on my return to bed, it was easy. I defy anyone, to actually sleep when one side of your body feels as though you are lying on an ice rink. I don’t know how long it took for sleep to take over, it did, that’s all I know, but I also know that I tucked that duvet in tightly around me, far more than once. Life when you can’t trust your body is hard to adjust too. When your tired and all the logic in your life is still hours away, it’s even harder. You can tell yourself a million times that what your body is feeling, isn’t really there, but, when it’s equally screaming at you, saying “I’m cold”, “I’m in pain” or whatever chosen sensation it is that day, all arguments fall apart. We automatically, trust those sensations, those messages, that have got us through life in one bit. Having to convince yourself that that story is now a lie, just doesn’t work. How long do you hold your hand over a candle, before you accept that you’re really being burnt? Well, that’s how fast our brains join in the argument, and it has learned to trust those feelings, not you.

Is it any wonder that we are always tired. Our lives have become one long argument and always without a conclusion. We all know just how tiring one argument can be, imagine a million per day. When your body starts lying to you, and every single action you take has to be double and triple checked, you, at first, look for any distraction. Hence, I believe why I never used to sit still. There is a point in every situation when distraction fails, then you’re caught, trapped in that argument and you know totally, that neither side can win. All you want is peace, a moment where your body, just works like everyone else’s, when you can be at peace with it. I have reached that point. The entire side of my body, can’t be numb. There is no way that it’s -10 on one side only. All I want, is a little peace and quite, a body that’s in, if only for a few moments, in harmony with itself.

 

Please read my blog from 2 years ago today – 14/12/2013 –  No more walking

Last night was the night from hell, it was my own fault as I had quite simply been on my feet far too much but I had a task to carry out and I wanted it done. Yes I know all about pacing but there are times…..

Feeling rotten and tired. LOL!

I am feeling worse this morning, not so much lungs filled with water as lungs filled with horrid gunk! I am sure I don’t need to go into graphic details. I had my morning all planned out before I went to bed last night, I was going to have a shower as soon as Adam went to work and then a bright start into my day of being me on line, instead I am sat here feeling grotty and sorry for myself, but that is what colds do and I have always had problems with them settling in my lungs, bronchitis and I lived together for many years when I lived in draft filled difficult to heat flats, but once being surrounded by warmth in and free of worrying about the bills I was fine. Now I am back in not a particularly drafty house, but it’s old and all drafts can’t be removed, although I have tried, but worried about the bills, I am once again in a cold house and instantly I have lungs that would love to know that today, tomorrow and everyday that there is enough warmth for them to breath easily. It is all well and good saying that I shouldn’t worry about the bills and worry more about my health, but what do you then do about the bills when they come in?

As winter has moved in on me I do feel more and more that to be able to hibernate would be a blessing, it is not just the cold and my lungs it is everything that has worked on pulling me down in the last couple of months, it has been waring on a person who had little enough energy as it was. That is often the problem with MS, little things pinch and poke at it, things that would have no real effect on most people and with each pinch and each poke it gets worse. Add in little extra something and you crash into just wanting to give up and let it get on with it. I don’t mean that I want to give up and die, I just want to roll into bed and to make a deal with my MS. “It’s OK eat my brain, or which ever limb you fancy, react to anything you feel like but just let me sleep until I have to wake up, because I can’t sleep any more!” Reading that back it still feels like I am depressed and I am totally not, at all. It really is a hard thing to share, we all know how hard it is to read things like that in an email or letter, I have often in my life avoided saying anything in writing that could be miss read, it is a good practice to have when you are working with different departments within one company as things do get misinterpreted, now I find myself trying to do the absolute opposite, but I still don’t what it misinterpreted.

Think about it or write down at this second how you feel, what your metal state is right now, put is to one side for a day then read it back. Unless it is all positive upbeat words, it will read back as probably not the way you really do feel. I wish that it was possible to just open a valve and for feeling to appear in colours and words right here for me. Illness can make you sound down as we all have spells of feeling sorry for ourselves, and the classic perfectionist of that is the common cold. Anyone with a cold will sound positively suicide, but none actually do kill themselves because of it. Have a serious condition and appear anything other than bright and breezy and people start to worry. Today is the same as many others, I am not dancing round the house singing, mind you I can’t ever remember doing that, but my point remains the same, where are the words for absolutely fine but I want to go to bed for the next month, it just sounds wrong.I know it was me who put this spotlight on to myself but it is just occasionally a worrying place to be.

The Degrees of ill.

For a very long time I have lucky and I have managed to steer away from colds and any of the bugs that Adam must bring home with him, this morning I think my luck has run out and I have the start of a cold. It’s not a normal cold as in a bad cough or blowing my nose all the time, I just feel clammy and totally off from my normal self. I managed yesterday afternoon to set my alarm incorrectly and I slept for 6 minutes short of 3hours when Adam came to wake me, knowing that I wouldn’t be happy at having slept for so long, he was right and I wasn’t but I woke with a great desire to roll over and go back to sleep, I managed to make it through to about 8:30 and then had to give in, tired to the point that my head hit the pillow in silence. I woke briefly for a few minutes around 6am, as I was having trouble breathing, once cleared sleep returned without any problem. The alarm was a nasty surprise that I really didn’t want to have to react to, I knew all too well that if I didn’t’ get up and move myself into the living room ready to wake Adam as he had gone back to sleep as always, I then become his second alarm, as without me, he would be late most mornings. It’s now three hours past that point of forcing myself into another day and still I want just one thing, more sleep. The symptoms of a cold seem to be nothing but the cold sweats but I know there is something going on, cold or something else.

It is strange how we adapt to what life gives us, I used to have like everyone else to states in life, well and ill, plain and simple, now I have OK, MS ill and other ill, with thousands of shades in between, shades that unless you have a chronic illness are hard to explain, but everyone actually live with, without knowing. Once you know that you have a problem with say your left foot, you notice all the things that happen daily but with a problem, is that part of what is wrong or is this something else, or is it some thing that happens everyday of my life but I just hadn’t noticed until now. If I was to ask you to concentrate on your left foot and write down all the things that you feel through it and from it, I know you would be surprised by what you are left with and just how much that foot actually feels all the time. We simply don’t notice as well they are normal, but are they, can you say 100% that that day was normal, starting to see what I mean. With there being things wrong with every part of me, I need to know how to scale the way each bit feels. I need to know what is normal and what isn’t, otherwise how do I know if it has changed or is the same. It has become a case of a scale for every toe, finger, eyelid, kidney, finger and so on. I need to know is it MS or something else, what it felt like 30 years ago, as that is probably the last time I felt normal, I need to be able to set it in on two scales, MS and none MS and on top of that is it something that needs attention or not. There is little point my saying I feel ill, big news I always feel ill, see it isn’t enough. I could write it all down to MS apart from one thing and that is I feel clammy, that is not an MS symptom, everything else I feel today could be just an upwards flare of MS but the clamminess tells me it isn’t.

It is days like this that prove to me how much it is needed to have somewhere that tells you what are all things that belong in the umbrella of MS or any other illness. Medical sites stick tightly to only listing the main symptoms, the ones that most with that illness will experience, but there are loads of other symptoms not spoken about, because they are too horrific or to rare to mention, accept if you happen to be living with them. I was delighted this morning when someone I know from Twitter first said that they had started blogging as they were inspired by me, something that I know a few others have also taken up because of reading my blog, but I was even more delighted when they said they had also been inspired to be totally honest and open. That meant so much more, that words are a little difficult even for me to find to explain it. It is like I have achieved something momentous that I didn’t even know I wanted to do, as it is such a major change in a person to inspire, that I am totally humbled by. I favorited the tweet and ran away, as I could find nothing to explain how pleased I was in so many different ways. It was also the lift I needed as I was really feeling rather sorry for myself, another proof it is a cold, it is the only condition I have ever found that makes you feel that way.

Financial Frosting

I am on the verge of turning on the central heating, this is the third morning in a row that I have had to put the fire on in the living room as the house is cold. I try not to put the heating on as like most people I don’t want high bills until I have no choice, with no work the need to keep the bills down grows daily. I know Adam would probably never put the heating on as like most men he doesn’t seem to notice the cold at all, at this second he is on the settee without a shirt on and I am here with a cold nose and fingers. When you loose your mobility you also seem to loose anyway of controlling your body temperature. It is normal for people with MS to not like it being too hot, but I find that I need the room temperature high with light clothing, if I add more clothes I don’t warm up as such but I start to feel ill. Locking the heat into me in a closed fashion, as a jumper would, makes my feel really bad, turn the heat up and sit in a nightdress and I feel fine, but let the external temperature drop and I quickly freeze. I don’t understand why temperature control is so hard to maintain, but it is really a big problem, add on to that I can’t afford to have the heat on, as I would like it to be, and there is my problem. I suspect that winter will only be a growing problem for everyone with the cost rising all the time, we are all going to suffer.

It is very clear to me now that every problem that anyone can have in life seems to be heightened by illness and it is often these heightened problems that make living with illness harder than it needs to be. I am not asking for any type of special treatment, but what I do know is that I now find difficulties that I didn’t include years ago when I made my first list of things required to make my future comfortable, just as I am sure we all do. You plan ahead, for example on what limited mobility will mean to you. I set my home up to be my nest as I knew that one day I would be ware I am now but I never thought that limited mobility would mean sitting freezing in my own home, when the thermometer is reading a temperature that I would have been happy to be in years ago. Or that I would be in the situation that in the upcoming winter months of not being able to go into my own kitchen and cook a hot meal because there is a very high risk of just burning it, bad on three levels, no much needed food, waste of fuel and danger of damaging the house. I never foresaw my future to be anything like this when I was young and I still never really foresaw it all when I got my diagnosis. I know it could be seen as doom and gloom but if it had all been written down for me to read once I knew what was wrong, I may well have planned slightly better.

The list of things that I wish someone had told me and explained to me, seems to grow all the time, but it is simply the fact that I didn’t know or imagine that has left me in this position. I know that we can’t predict the future but I also know me and I would have made more investments than just my works pension to help ease us through this time. That is actually something I need to look at soon as I can draw from my pension when I am 55, not that that may actually be a bad move, but I will have to find advice on what to do there. I hate all this paperwork stuff now and I like many don’t know when or who to trust when it comes to financial advise, I can’t get out there to do the rounds and see what advise is given by different people, so where do you start, again something I might have done differently, I think I would have had a better hold on my money and paid more interest as to where it was and what it was or wasn’t doing for me, when you have a steady comfortable income they are all issues you think you have a long time to get to grips with all that stuff, I thought it would be another 10 years plus before it was of final interest. Yet here I am, a little lost as to what and who I can trust to sort out all these things.