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I really am getting better or at least leveling out, as although I don’t actually feel fitter in myself, I have started making plans and working on ideas. A really good sign. The past week I have felt like doing little other than sleep or vegetable mode, right OK I know that isn’t politically correct but neither is MS and as it is my final destination, I think I am allowed.
Adam has returned to work today with his double checking that I am OK before he headed out. I don’t know what he thinks will happen just because he isn’t here. I am well past the stage of being too pigheaded for my own good, I no longer have a mad turn and pull the ladders out of the cupboard so I can wash the ceiling. There is a point I am sure in all illnesses that you have to simply accept some limitations and stop pushing yourself to the limit and beyond.
In the past I have found myself sitting at the bottom of ladders confused by my position, as I was sure I was at the top. Pulling myself across the floor searching for something that I can climb up on, as the floor that I was cleaning turned into a human magnet and I can’t get off it and even sitting on top of the kitchen drainer working out how to get onto the floor again, as I had been standing on it to clean the window. No longer do I try to reach, bend, stretch, climb, run or dance they all always land in disaster. I had to take the hint eventually but Adam seem to think I still do loads of silly things I shouldn’t. I am no more invincible than do I need to be wrapped in cotton wool.
Taking your time to plan though simple things actually makes you realise just how stupid you have been in the past. I’m sure we have all in our lifetimes, instances we remember with a cringe at our own stupidity. When you have to remember what you actually can do, you start to see things very differently. Everything that took no thought, now becomes a long embedded equation with factors like fatigue, energy reserves, flexibility, pain levels and more. I expect I probably would be very good at risk assessments these days, a health and safety dream.
Looking back over my life I think the silliest thing I ever did was to run away from home when I was 12. The reasons why I ran at this point are not important, what is was the fact that aged 12 I managed to be missing for nearly 3 weeks and I hitched all the way from Aberdeen to Stratford-Upon-Avon via Wales. I had taken some money with me so I wasn’t sleeping ruff I had been staying in Youth Hostiles, using my own name, just a different date of birth, but still I wasn’t found. It was a school friend that I phoned one night who told them where I was. I still wonder how I managed to find nothing but helpful friendly people where ever I went. My family must have gone through hell, while I was having a great time. I took lifts in cars, lorries, with anyone who would stop for me. The first day I made it to Edinburgh, I still remember feeling fantastic that night, no fear of anything and planning my adventure that was supposed to take me to London. Now I am so glad I didn’t make it, what could have happened if I had managed to disappear into the millions who lived there I have no idea.
If only the innocence of a child was the true picture of life, the world would be a wondrous place to be. Mind you it’s not that dull a place just as it is.
I’m not clear but I am sure that this flare has reached it limits. Yesterday evening I found that I could at last relax into a spasms rather than be gripped in agony. I know that sounds a little odd to anyone who hasn’t been through pain of this nature but I can probably at best equate it to labor pains and being taught to go with the pain, breathing and letting it happen rather than tensing and fighting it. When the spasms are bad you can’t do that, the pain and tightness of the cramp just throws the surrounding area into tensed knots that set solid, forming a wall round the spasm core. You can’t break that, it is a fortification that will stand against everything I can throw back at it.
With this improvement I started this morning to reply to the comments and emails I have had, then realised that the best way to do that is right here.
To those who don’t have MS it is hard to understand that there is no medication that really helps when things are really bad. My MS is one of the nastier ones that never leaves me at peace, I am on a path that is always downwards and always debilitating. On the surface to an outsider a spasm is a muscular process, but it isn’t, all the effects of MS are from the nervous system. For example if you had muscle fatigue and lose of strength you would expect the answer would be to exercise and build the muscles up slowly so that they don’t become fatigued, that would work unless you have MS. The fatigue is coming from the nervous not the muscle, exercising only causes more pain and will never stop the fatigue, so a viscous circle emerges as in time the lack of use wastes the muscle and normal fatigue also starts to occur. The weaker the muscle become the more they spasm, there is no winning formula.
So far medications that are available have little useful effect as they can’t be targeted enough, to be effective. I would be dangerous to constantly use muscle relaxants at the level needed to stop spams, that level would leave you zonked out with loss of accentual muscle controls. You can’t medicate the nervous system either at the level required without either breathing or heart problems, so little is left other than normal pain control drugs which are simply not strong enough. The only thing that can be done is low levels of drugs that are designed to hold things at a balance point and sort of do this, well at least allow daily living.
The scariest symptom and rare in most forms other than ‘Relapse Progressive’ or ‘Primary Progressive’ has to be the ones that cause breathing problems. I would class myself as lucky, apart from the spell that I spent in hospital, to date, they have been minor, just silly little blips. Clearly though anything in my body that has a nervous system link within it, that means my whole body, can be a MS target.
There are areas that are common to all MS patient, all will have some degree of problems with, arms, legs, pins and needles and numbness, the next layer seems to be eyesight, memory, speech, eating. The layer above this is when all these symptoms and some others, become severe and debilitating, some will die directly from MS, most die from associated conditions like pneumonia.
Today my left leg is still more painful than normal and there are spasms in my lower and upper spine. The fog has cleared enough to be just a mist and my tremors are intermittent rather than constant. The hug is back with a extra pressure in my diaphragm, all of this is above normal levels but unlike the past few days I feel that I once again want to be part of the world rather than looking for a route to hide from it.
This morning I was on the phone to a friend talking about his drum kit, after a few minutes I have to say my mind started to wonder, although I was in the music business years ago I was never really into the finer details of different types of cymbal. For the first time in the past couple of days I found myself grateful for an extremely painful spasm. As he started to discuss the fact that his snare drum was made of brass, tears started to run down my face and I started doubling up. This was the third attack today on my diaphragm, not an MS hug, that is the intercostal muscles but right round me crushing the lower part of my lungs and my stomach. The pain radiated round me and up my spine taking it to my shoulders and I had to get off the phone.
I had at 7:30 this morning dared to think I was heading to the end of this flare but clearly I’m not. My left leg is still sore, which I would expect as there is always areas that take time to settle but there was nothing new and nothing that I thought had got worse. For two hours I was really feeling brighter due to my optimism but it wasn’t founded and was definitely premature.
On a scale of one to ten this hit at level ten right off, no gentle working up, no warning, just huge pain. I tried lying on the couch but it’s too short really so totally flat out is impossible, I thought about the floor but I always have problems getting back up. There is one good thing about spasms, the clue is in the name, they don’t last for long and the muscle will release. This one was turning into a serial killer, and leaving pain behind it. After the fourth episode, I retreated to bed for a couple of hours and the vertical position has actually helped. I had lain there as still as possible trying to relax my upper body as I have found before that spasms can be triggered once they have started themselves. Fingers crossed I have made it to 3 hours, there is a residue pain, just as you would have after having a bad cramp and I am moving slowly just in case.
The good news today is that my face feels normal again just small normal spells of tingling and gentle numbness. It seems to centering on my spine, the gentler one in my lower back and are still there, with now a big sister from hell centered on my upper spine. Add the fog, stutters, tremors and twitches it is fare to say this is day 5.
I wrote and added a piece last night and I had to delete it this morning. To those of you who tried to read it I apologise, I have no idea what I was thinking, it clearly made no sense at all! I had been having pains in my lungs, sharp little lightning bolts, not over painful but enough to get my attention and I had started to worry. About 8 or 9 years ago I found myself in hospital for 2 nearly 3 weeks. My breathing had gone a little mad, I seemed to either be able to breath or to talk or eat. The co-ordination between them had gone and all required a conscious effort, to do anything other than breath. Ask my to speak and I would forget to breath, feed me and the same happened. At night I had an oxygen mask to hand and sometimes woke gasping for air, I had probably done nothing worse than try to swallow. It would be fare to say that it was the most scared I have ever been by what my body was doing to me. Finding that the basic things of life had forgotten how to work together was simply nuts. I had several very high intravenous steroids drips attached to me over 4 or 5 nights and slowly it all came back to normal. My then boss had visited me in hospital and she told me later, she at that point had thought that I would never be at work again. I still have odd occasions where I seem to forget again and I just have to stop, concentrate, then move on again.
I am glad to say that my breathing is fine this morning and at this second I actually do feel a bit better. A combination of my meds and exhaustion knocked me out last night, the sleep I got helped a lot. There is less pain in most of my body other than my left leg and lower spine. If anything I would say my leg is worse, almost as the surrounding pain has shifted into a more focused attack. The middle of my face, a triangular shape from the bridge of my nose to the sides of my mouth, is numb but tingling at the same time, a little like the numbness left after going to the dentist. Having part of my face missing isn’t new but it is usually a short lived sensation, this appeared last night when I went to bed and so far hasn’t gone again. Just as when an anesthetic is wearing off drinking is an interesting challenge.
The real test is as the day goes on, it doesn’t matter what ever is wrong with you, even just a cold, it is always worse as the day goes on.
I had little sleep again last night. Trying to sleep was equally draining as trying to find a position to lie in, but it made me more determined to keep documenting the process. It is one of those facts in life that once a pain has gone you really don’t remember exactly how bad it was or the exact places it was in. Think of the worst accident or pain you have ever had, I bet you can’t really remember it anything like as clearly as it was felt at the time. Ask any woman who has had a baby and I know they don’t, nature gives us pain to alert us to something, not to scare us for life. I have lost count of the number of times that when I have been asked how things have been in the last 3 months and answered ‘not to bad’, although just weeks before I have had this type of flare.
I know there is little that can be done by the doctors other than giving me very high dosage of steroids which in themselves make me feel ill. From my experience all they do is shorten the flare by a few days, but at the levels they give me they are dangerous in themselves. If by Monday I am no better I will contact them.
My lower back and legs seem to be the target area this time. I find anything to do with my legs really scary. I always worry that I will not be able to use them, just as I lost my left hand a few years ago. Being housebound is one thing, bed bound would be a million times worse. I don’t know why it is always the left side of me that is effected the worst, my left shin feels like there is a razor blade slicing into it when ever I walk, and jabbing it when I am still. The spams are continuing in my lower spine today so I guess that is were the pain in my legs is really coming from.
I have had some lovely messages and I thank all who have sent them, please accept my apologies for not answering just now. This alone has take most of today to write. My concentration is limited and I guess that I am not writing as well as normal. I know this will settle but I wish it would hurry up.
I spent most of yesterday in my bed, not always asleep but always feeling terrible. On Monday evening I was shattered, I simply had not strength or inspiration to do anything other than sleep. I had pushed myself to stay up until the 10 o’clock news but I couldn’t even make it thought to the end. After just two hours sleep I woke in not just pain but with the feeling that my entire body was wrapped in shards of glass, some piercing me with a cold so intense that it burned, others twisting their way through my skin with a force that left my insides feeling as though they would explode. I spent the entire night between sleep and pain, having to get out of bed on occasions as the pressure of the mattress was unbearable.
Yesterday I was drained, there was little that I could do and little I wanted to do. The pain had subsided to bearable but had left behind bruising, not physical but deeply felt. I was zombied, no other description could apply. Apart from a couple of hours in the afternoon I still couldn’t sleep. All of my muscles were tensing independently, some to cramp level others within a whisker, none responding to my command to relax. There was a complex combination of crippling numbness, pins and needles replacing themselves with swords and sewers. I couldn’t write, I couldn’t play complex games just mindless one’s, badly, but that was more successful than my attempts to watch TV. There was little escape and little relief and nothing I could do.
I know that I shouldn’t have done it, but I fiddled my meds and managed to get 10 hours of much needed sleep, waking with the alarm and the instant knowledge that I still wasn’t clear. This is an MS flare, nothing about it is within my control, nothing about it is pleasant. What it’s outcome will be and when it will settle is unknown. I am forcing myself to think and to type to get this down as it is happening so there is a record. I couldn’t have done this yesterday, so that means there is an improvement today, but I want at this moment is to escape it. I wish I had the drugs to safely put myself to sleep for a few days, I don’t, I just have to keep going.
Adam is on holiday and I am doing my usual act as much as possible that things are normal. I know I can’t hide it and I know that he can see it, but I am not going to let him feel it. If I am honest I would rather he wasn’t here today, the act is hard to keep up and I would rather have the space to cry, curl up and vanish. It has taken my over 3 hrs to get to this point, my fingers are dyslexic and my hands made of slippery sponge, my mind is spinning through areas of nothing, finding small sparks of normal. The centers of the pain today are my legs, so I am moving as little as possible.
This is life with MS, this is were I and thousands of other are at this very second in time. I don’t want sympathy, I don’t want pity, I want relief.
There are some part of my MS that are hard to talk about, even with my husband. Last night I had to brace myself and have one of those conversations. When you are close to someone it can be harder to speak than it would be with anyone else. You don’t want them to see you as anything other than the person they married, especially when you have already had to chip off small piece, by small piece of their image of you, it becomes harder to chip any more pieces away.
Adam and I have been married for nearly 13 years, we married on his 21st birthday and we were weeks past our second anniversary when our world crashed around us both. I do mean both, MS has changed both our lives. He has shared each and every step downwards and tried to support me. I have felt so guilty at times as it just didn’t seem fare that he should go through any of it. I had married him as I love him, not to condemn him to being my carer and no matter how many times he tells me that that isn’t how he see it, I feel guilty. So having to tell him that yet another part of me is now failing and I may need his help with it, isn’t easy.
For several years I have had problems with my bladder, it like the rest of me is erratic and uncontrollable. I was taught how to use catheters, to ensure that it is empty, which helps in two ways. First it dramatically reduced the number of times I had infections from a couple a month to a couple a year. Second along with going regularly, as I don’t get the normal messages, reduced the accidents. Despite this there have been times when I have been beyond embarrassed, as once it starts flowing there is no stopping it. To my total embarrassment Adam has had to clean up after me on occasions. So last night was difficult, I had to give him the news that the same is now happening to my bowels.
Over the past few weeks I had worked out what was happening and that was one of the reasons I had called the rehab team. With all the details the team have decided that me fears are right. The nurse came to see me again on Tuesday and we went over the initial diagnoses and options. When I eat the process just pushes it through at the other end, clearly the reason for my weight gain in the past couple of months, the reason that I look 6 months pregnant and the pain through out my torso. Yet again at the minute there is little they can do but try to control it with laxatives, sounds back to front but we will see.
Although I know my MS is progressive and there are no really remissions, sometimes it feels as though I everything is stable and I am in a period of calm, when in the fact it is nibbling away at something inside. I then become like everyone else, unable to see what is wrong and not understanding that anything is. I can and am, frequently as naive as anyone else, when I see my hands not working properly, I know what is happening, when I choke on my food or drink, I know what is happening, but when it’s inside, unseen, it sneaks up on me, tricking me into thinking I’m OK.
If there was a smell in this world that I would hate to never smell again, for me has to be Vanilla. Pure Vanilla, not mixed with magnolia or any of the other things that air fresheners insist on adding. Vanilla to me takes me back to being a small child and before anyone jumps in with a connection to ice cream, well you are wrong. My mother used to make what she called cornflour custard, the world is now full of different brand so powdered custard but back then I can only think of three, Bird’s, Creamola and Mum’s, alright my Mum isn’t a brand, she also wasn’t a very good cook. I used to love School dinners as they were edible all the time, unlike the stuff that appeared on our plates at home. Yet she had one saving grace to the child that was me, cornflour custard.
All custard powders are the same base, cornflour, flavoring and colouring. Except Mums’ it had no colouring and a wonderfully strong vanilla taste. All she did was heat milk, add sugar, vanilla extract and then the slated cornflour. Once cooked through she served it with a handful of Sultanas on top. Not only did we get this glorious pudding after our evening meal on occasions, we also received it as a cure all. Any time we were ill, this bowl of heaven appeared with the sultanas added as a smiley face, it always worked as well as we always got better.
To this day vanilla is still a smell that means instant comfort and home. Smells link us so quickly to places and to people, last night I made a fruity chicken curry and I was back at my Auntie Lorna’s, she was the person how introduced me to the wonders of Indian food. With at little thought I am sure I could find more and more of them but cornflour custard is the one I still make when I feel unwell with something other than my MS and although my nose doesn’t stop running or my cold doesn’t go away, I still feel better.
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