Something’s, just make you smile

I shouldn’t have done it, but I did. When you start to feel desperate, we all think about things we shouldn’t do, but I knew inside, it was the only answer. Somehow, I had to reset my system, force my body to do what it’s supposed to, rather than running mad, as it has been the last few days. I remembered several months ago now, that I was at my wits end with the pain I was in, so I took the desperate measure of taking a double dose of my Morphine booster. I had gone to sleep scared, as I didn’t know if I had taken a dangerous dose or if I was going to be OK, I slept the whole night and woke with my pain much reduced. I never once thought that it was the Morphine that made the difference, just the fact, that I had had a really good sleep. Last night, I didn’t take a double dose, I took a dose and a half. Snapping the tablet was easy enough, swallowing it, not so easy, as the sharp edge kept catching on my throat, but on my third attempt it went down. All I was looking for, was for my body to slip into a deep sleep, and stay there. If I could bypass the fight to get to sleep, then go into a deep enough sleep, there was just a chance that when I woke, I might find the improvement I have been longing for. I lay there for a while, still feeling all the sensations, the insects crawling over my legs, the fire and numbness of my feet. Just as it has been for the last few days there wasn’t an inch that I could find, where silence was actually known or remembered. Everything that had been there for the entire last 36 hours, without a seconds break. I lay there, waiting, hoping and even slightly praying because I had quite simply had enough.

Adam had questioned me during the day, over why I hadn’t gone to bed in the afternoon. I told him the truth, I didn’t want to sleep, I was going to listen to my body and just do what it wants. What I didn’t tell him, was that total truth of why, I didn’t want to lie down. I didn’t want to be in bed just lying there feeling once again all the things that had kept me awake the day before. I had already hatched my plan, I was going to keep myself awake until 9 pm, then take my extra meds and sleep then. Sitting here, I was still able to blank the bulk of it out, I could use distraction to it’s fullest, not a total success, but enough for me to ignore all but the worst. When I woke just before 7 am this morning, I feared that it hadn’t worked. I was pain once again in my lower back and I was desperate to go to the loo, as for the rest of me, well my bladder and back, were screaming so loud, I felt nothing else at first. 7 am, there was an hour and a half before the alarm was due to sound. I wasn’t really tired, but I knew that I could still sleep and that hour and a half, could just make all the difference. I sat in the Kitchen for a few minutes, just smoking my cigarette and working my way around me, searching to see what I could find. What I found made me smile. There was pain, there is always pain, but there was also silence, beautiful silence. I had stepped back in time, between the what I now consider my resident oddities, there was nothing, normality, skin that was just skin, rather than a mess of messages that just didn’t belong. The first of my goals had been achieved, all I had to do next, was to lie down.

I have to admit, that I was hesitant, part of me said just stay up, accept what you have and have a good day. An hour and a half, though, is a long time when it comes to being relaxed and rested. I had to give it a go. Climbing back into bed, was as hard as it was to get out. I don’t know what has upset my back, but it is determined to produce pain in the morning. I know it’s not the mattress, we only replaced that a few months ago. I had hoped that it was just part of all these heightened sensations and although this morning, it didn’t hurt as badly as the past two days, it still hurt. I had also been playing with the idea, that I have been spending my nights, reacting to what I could feel, even in my sleep and I was somehow twisting my spine, but I couldn’t be sure. Once lain down, I found the perfect spot where the pain almost vanished, then I waited. At first, there was silence, everywhere but my back and my hands and arms. The wheelchair had done it’s normal, but the rest of me was totally silent. I lay there still smiling into the darkness, no rainbows of light, just darkness, and silence. Yes, there was a growing numbness in my legs, but it was just my legs, not my face or anywhere else. I smiled my way back into sleep.

The smile didn’t even vanish when I did get up to find Adam still asleep and not on his way to work. My fears of my new getting up hour had happened, he had slept on and was by the time I got up, late for work. Even that didn’t upset me, it’s funny how something as simple as sleeping deeply and my body shutting up, has made me feel so good. It’s three hours on, over those hours many areas of displaced sensations have returned, I don’t know what will happen when I next lie down, right now, I don’t really care, as I slept and I’m smiling.

Please read my blog from 2 years ago today – 30/12/2013 – 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……

 

 

 

Through our eyes

I have always thought that it is a good thing that we all have our own personal image, not just in our heads, but even in our mirrors. If I had trusted and believed my mirror, I would have been heading to the surgeons asking for chunks to be cut off, for no other reason than they looked wrong that particular day. I believe that we all have a very mild form of body dysmorphia, which for us, is a good thing. The proof is simple, we can look in a mirror and think we look wonderful, then see a photo even just days later, and see ourselves as everyone else saw us, the two images, just don’t match. Which is just one of the reasons, that I hate having my picture taken. Yes, I know I have some great pictures of me, but those few somehow captured what was in my mind, rather than what was in the mirror. Mirrors, normally, live in a space where they are bathed in bright sharp light, great photo’s, are blessed by great lighting. How we see ourselves, be it in our favourite mirror, in our heads, or in those pictures, always matters. It doesn’t matter if you are a teenager or an old fogy, we always know what we want to see, and for the majority of us, we always want to improve it.

I thought by now, that my arms would be getting just that little bit stronger and that I would be seeing the results in my upper body. It is now well over 2 months that I’ve using my wheelchair, even though I knew my arms had become severally weakened over the years, I thought, there would have been some improvement. There is a tiny one, but so tiny, it’s hardly worth admitting to. I’ve never done any research as to the effect of exercise on muscles that are being attacked by both PRMS and Fibro, I just based my expectations, on my own history. It’s about 8 years ago, that I for the first time used my wheelchair, back then, there was a marked change within the first month. Not so much in their strength, as I had always had good upper body strength, but they regained their tone. After years of carrying incredibly heavy record cases, plus having been keen on exercise of all sorts, I just stopped. A change in lifestyle, thanks to my work, meant all of it stopped. I gained half a stone in weight, and my body tone rapidly felt as though it went south. I had tried to do what I could, but I was by then sat on my backside on a phone for 8 hrs a day and walking the mile and a half there and back, just wasn’t enough. Then when my health went into rapid decline, the exercise levels fell off the planet, as my legs were badly affected very quickly. It had been 6 years since I had last been happy with my body, so seeing at least my upper body tone reappearing, was a joy. Not too surprisingly, when I sat in my chair again 2 months ago, I expected at least a small improvement. I know I am at the age where bingo wings begin, but I just hoped they might retract a little, but nothing.

So, OK, my house isn’t the size of a call center, but all of that taken as fact, how is it, that in a smaller space, I have managed to do what never happened at any time, ever, before, I have destroyed my hands. It appears as though life still finds ways to laugh at me, even when I’m locked away from it. No muscle improvement, no new strength, just hands who’s knuckles find it hysterically funny, to jump our of their sockets and cause indescribable pain, just because they now can. If that wasn’t enough, the tendons in my forearms have also found their voice. I had such high hopes when I asked Adam to bring my chair out of the cupboard and to give it a clean. I thought that I had found the answer to legs that collapsed and bingo wings in one. Well not just the wings, using a chair, tones right down to your stomach, they really are the perfect upper body workout that has ever been created. Yet here I am, with not the slightest sign of anything good happening at all. Since I became housebound, I have found it totally impossible to lose weight. I do so little, that it is just physically impossible to shift even a pound. Thanks to the pain that is throughout my body, conventional exercises are out of the window too. Even the physio’s won’t prescribe any form of exercise for me, as the balance between use and pain, is so fragile. I had my fingers crossed that removing the strain from my legs, would mean energy wise, I could shift to my arms, but with an extra positive twist. That twist is totally missing and it’s is so annoying.

For my entire diagnosed history, the effect that my health has taken on my looks, as been a roller coaster. The first few years, the weight piled on. Then I lost the ability to eat for nearly four years. I lost so much weight, that I landed up with a gastric tube as I weighed just 7 stone and I was on the verge of malnutrition. My clothes sizes had gone from my normal of a size 10-12, up to a size 16 and crashed to between a size 6 and an 8. I am talking UK sizes here, a size 6 is nothing, the literal skin and bones, with the emphasis on bones. Since I became housebound, up my weight went past my norm and on, it’s held at 18, which to me is huge, ever since. I hate what I see in the mirror as much as I hated the size 6. This is why I say, I think we all have a touch of body dysmorphia, as I usually didn’t see the 6 any more than I always see the 18, I’m still a 10. I know without a doubt if my health hadn’t stolen my body, that size 10-12 is just where I would be. I also know it would be toned as that is just me, I never let me body win, it did as I said or else. I know I am not alone when I say, that in some ways, the cruellest thing our health can do is to change our looks, and to remove the control we had over them. I may have all the time in the world now, but I can’t do a single exercise to help with what I see.

None of us want to be anything less than the person who lives in our heads. We want to measure up in every way, not just looks, but looks is what the world first judges us on. That’s why it’s extra cruel, we’re being judged on something we have no control what so ever on. So OK, if I were to make a list of the horrid things my health had done to me, my looks wouldn’t be the uppermost one, but it wouldn’t be far below it. It isn’t vanity, it’s about being a perfectly normal human being. Show me the person who doesn’t brush their hair and look in a mirror before they leave their home. There isn’t one. I can show you millions of people who say they can’t do anything about their weight, or the flabby muscles, their liers, they can. When I was 19, my weight ballooned to 18st 6lbs, I was pregnant and OK, over 11bls of that was the baby and a huge amount was proved to be fluid, but I still had 4 stone to lose. I lost all of it, and never, put it on again, we can normally all do it if we are determined. We are the real deal, that small number of people who really can’t do anything about it, and it’s just not fair. Just because we have an illness, or even a rather large collection of illnesses, it doesn’t mean we don’t want to be who we believe we should be. We can switch off that part of our brains, that keep telling us that we can be, or still are, that slim, well dressed and smartly turned out person we always were. In our heads, we’re still there. All those years of dieting, exercising and doing everything right, with the plan of long healthy life, were for nothing.

In my opinion, there are just too many brightly lit mirrors in this world, for us to be able to forget what the truth is. Sadly, it doesn’t matter how many times we tell ourselves, or others tell us, that it’s not our fault; that they love us regardless and always will; that we’re not the ones all those ads, and health warnings they roll out on the news about obesity, are aimed at; it’s always going to hurt, it’s always going to feel unfair. I can joke about it. I can even be positive about it. I can set my eyes to history and see what I want, but it doesn’t change reality. Nothing does.

 

Please read my blog from 2 years ago today – 30/11/2013 – Never alone

I made a wonderful discovery last night, nothing that will change the world but something that made me feel just that tiny bit more sane. Anyone who has a condition that effect their nerves will have had spells where their skin feels……

One Year on

Well I have made it, one complete year to blogging! When I started this I really didn’t think I would be able to come up with enough to write about in one blog far less two, or that I would be on twitter and Facebook, to say my life has totally changed is putting it mildly. I had already been housebound for 4 years, but that was 4 years where my life had changed very slowly, I was already used to working from home as I had been doing so for 3 days a week as it was, going to not going out at all was actually a relief as I found the process utterly exhausting to the point that the days I did go out I was able to do a fraction of what I could from home. Finding that I was now trapped by not being able to use my wheelchair, was actually a relief, one that became visible within the first couple of months as I managed to remove my gastric nasal tube and actually eat enough not just to live but to start restoring my pathetic body weight. Four years of working from home, a total of 13 years working for the same company and I was faced with redundancy, four months on from there and the first blog appeared. I never thought that just sitting writing about my health and my feelings daily, could really make such a difference to me.

The biggest thing that I think has changed is that I have found myself, the one that got lost when I was working in an office type job, I never saw myself disappearing but I did. My work before that allowed me to be totally who I was and to do what I wanted in a way that made me proud of myself. Some how I disappear under a corporate blanket, and it is only now that I can see why people drop out of society and live what we call alternative life styles. The regimented life that we are forced into when we become a drone in an office really destroys your own beliefs and feelings. Don’t get me wrong I loved it at the time and I miss the work side of it to this day, not just the wage. You are left without the time to appreciate what life really is about, to think through how you love people and why you do, to understand what it is to be alive and how to make the most of it, not just pass through it as fast as you can. Working in the corporate world taught me how to lie, they call it spin, how to conceal fact from those who don’t need to know and how to obtain information from those who are concealing it. I didn’t realise how those small facts can really stress you out.

I am at heart a person who conceals nothing, who tell the truth and nothing but, who loves people without exception and regardless of what they do or have done. I don’t hold grudges and I hate to see anger or deception of any sort. Until you step back from the outside and you stop listening to the ad mans babble about what you need to live, you don’t know who you are, you might think you do, but you don’t. When I set out to learn about my MS and all it’s friends and how they effect me daily, I had to start listening to my body and doing what it told me rather than what I told it, I learned so much more than I thought I would. When you center your thoughts on yourself, slowly you start to find a peace, an understanding about what it takes for you to live, not just with your illnesses but with the entire world. For me much of it was about tearing down the rubbish that had concealed me since my childhood, that mass of stuff that we think makes us and adult. I didn’t realise that was what I was doing, I didn’t realise much of it at all, it is only when I read back what has changed that I see. When I was DJing and living my life in a hap hazard way was the closest I got to this before, but even then there was still an illusion wrapped around me, they to have now gone. For me there is no mumbo jumbo about living well and being happy just a few simple steps.

I have learned in this year that we should all listen to our bodies not our brains when it comes to anything to do with our health, well or not we abuse our bodies, listening to it even for things like eating and sleeping will effect how you really feel daily. Then their is routine, routine in everything, eating, sleeping, the things we like to do and have to do. Those two simple steps are all it takes to settling you at your best possible physical health, but it is the mental health that is required to make this all work.

I don’t think you can find peace and happiness as long as you live by what we see around us. What I mean by that is taking away that veneer of what others expect of you, you have to be honest at all times, open about everything and open to everything. I had to revert to the child who cares about and loves everyone until there is a reason not to, then start loving them again. Hate is a word that has to disappear, it achieves nothing. I have had so many reasons in my life to hate people, but the thing is, hating those people allows them to keep hurting you, forgive and move on,

The biggest thing though is to start writing, not if you don’t want for the world to read, but I think that is good as it means you really are hiding nothing, a private blog I don’t think would work quite as well. Writing daily about your day, your feelings, your wants and reasons, is the most wonderful way of thinking through everything and letting yourself analysis just how things effect you. If one year ago I hadn’t started writing I truly think that without a job and with no way of getting one, time alone would have driven me into depression, the activity of writing daily in itself is the final piece of the puzzle as it gives you achievement, vital to our mental health. Who know what I will be writing this time next year, but I know 100% I will be writing as it truly is a magical way, of putting to rest what isn’t needed and to celebrate what is.

One year one I can also say with total confidence that my health is worse, so no surprise there, but I can track it and see where it’s going, thanks to this blog. I have records that show that downwards curve, I expect totally that one year on from now I will be saying that same. I hope though that I can also so that I am happy in my life and my world and that I am still glad to be here, glad to have the love of my husband and daughter and glad to have wonderful people like you reading and helping me through.

Finding the hope

I seem to be spending a lot of time crying just now, not something I want to do but something that I have to do. I am not normally the type of person who wallows in self pity, but to be honest it is more grief than pity. I have for to long been convincing myself that I carried off an award worthy act of everything is OK, this is my reaction to learning that my act was fooling few and some not at all. As creatures we really do think to highly of our abilities to fool the world, when in fact the only person we are truly fooling is ourselves, well that broke down, so what the world moves on and this is a new day. See I can say it, do I believe it, well yes and no. I believe it in that it is a fact, but I don’t believe it, when the tears start again.

I have had some wonderful comments and messages both here and on Twitter and I thank all of you for what you have said and if any of you doubted that I would rip the pain from inside me and slam it down in words, well I hope you have lost those doubt, there is nothing that I won’t pass on to those who will read, otherwise what would be the point of doing any of this. This is day three of trying to put myself back together and I am getting there, yes there are still tears but there is also a relief that I have at last been forced to look at myself as I am now and put to bed the idea that I can some how claw my way back to who I was just 2 or 3 years ago, if not who I was 10 yrs ago. It is the old me that I am grieving for because I now see she has truly gone and can never return. This stage of my illness is a hard one and I doubt if it will be the last time that I put myself through this, yes I do realise it is me that is the root of this, not anyone else, everyone else saw the truth and politely worked with it.

It is mad how much we can upset ourselves, and how much of our lives is spent trying to hide from what all other know. The simplest example of one we all do it the kidding ourselves daily when we look in the mirror to the fact we are growing older or that we have put on some weight, I was kidding myself about everything. I know I had written before about loss of concentration and so on before but I had sugar coated it, the stark reality was to hard for me to take, so I built a world that let me ignore it and hid. I am now standing outside that world and facing the one that everyone can see and has listened to for years.

I accepted years ago that I can’t escape this house, that this is the space I have to live in and there is nothing else available to me. Now I am having to accept that I can’t escape this body or mind either, there is nothing else available. I have cried less this morning and I feel stronger in myself, more able to see a way through if you like. Today has started with a more positive feel to it, a feeling of being myself who ever that is, but I suppose it might not be as bad as I feared, after all I don’t actually have much of a choice do I.

Family Attachments

I am so tired today, it is one of those days that we all have from time to time, I just don’t seem to be able to get myself going, there is no oomph. I know we all have days when all we really want to do is curl up somewhere soft and warm and just stay there, not sleeping just relaxing. Part of me screams at me when I feel like this to just do it, after all I am not working and I have no reason other than personal, to be sat here writing, reading tweets and answering them. There is no real reason why I shouldn’t just take a day out and switch this thing off, but I can’t. Just like I did when I was working, I have made a silent commitment to not let anyone down, and there is a great feeling that I would either disappoint my readers and friends by not being here, or that I would worry some of them if I simply vanished for a couple of day. It is one of the characteristics of my personality, that I won’t let people down, the thought that there is one person out there that might be disappointed, is enough to keep me going.

Next week though, my presence will be reduced as my daughter is coming to see me on Thursday and Friday. I haven’t seen her now for about 2 yrs, this is the first opportunity she has had to come up to Scotland since she transferred from San Fransisco to London. Settling into a new job and a new city has of course been top of her list of things to do. She is planning for her wedding to be in Balloch, it is where the rest of her family live including three of her brothers, she will stay there allowing her to have a room to stay in, if she stayed here, she would be sleeping on the floor as we don’t have a spare room. It will be so good to see her again and we have so much to catch up on, although we have actually been talking more often on the phone than we used to. It is strange to think that my little girl is actually about to get married for the second time, how did I get that old, that I can actually be in that position? Although she will be getting married less that 50 miles away I will still not be there, but she is working on getting someone to live stream it, so that I, and some others who can’t attend can watch online. It is wonderful how things have changed so drastically over my lifetime. When I married her father, my grandmother, the only one I ever knew, was too ill to make the 60 mile journey, my grandfather came and there were loads of photo’s for her, along with the flowers from the church that I had sent out to her, but in my heart she was missed. She died a week later, but I would have loved it if she could have seen it, there wasn’t even the option of a video in those days. I may not be there to see it, but sitting here really will be a fantastic improvement.

Missing all that big events in life is really the hardest thing to adjust to. There have been a few family gatherings that Adam has had to go to by himself, while all I could do was sit here as though nothing was happening. To most of his family I have been invisible for a long time and most of his cousins I have never even met. As for my family well I haven’t seen any of them now for about 8 or 9 yrs, my younger brother appears in my life from time to time, he will phone and say all the right things, ending the call with promises that he will stay in contact and then vanishes, not answering my emails or the messages on his voice mail. It is the way my family has always been and it is something that to be honest I simply accept, like many things in my life. My family is now just Adam and Teressa, and I feel blessed to have both.

Everything about being housebound, leads to friends and family leaving, as it means they have to be the ones who take the time, make the effort and the journey. After a few years you know exactly who your friends and your family really are, they are the ones who really care and think nothing of doing everything and anything that it takes to just be there, and that is true love. I thought I knew what that was years ago, but I was so wrong, it has taken all this for me to discover the truth of real love, once you know what it really is, then it is easy to accept the disappearance of the false people, as they are no match to the real ones. The love of family is so important but even their love can be as false as a friends, something I have learned and something I have accepted, and something has freed me to actually enjoy what is real.