Tag Archives: Chronic Fatigue

The flow of one life

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The first month of another year is almost over and the start my 11th year of living the housebound life has begun. That is a strange sentence for me to have actually written, as the biggest thing I have noticed the longer I live, is that time is totally irrelevant. I don’t know if it is just age, or if it because of how I live, but time means almost nothing, other than when I need to do this or that. The clock totally dominates my day, but as all my days are the same, which week of which year makes no difference at all. I rise, I take my meds, all set out for each time slot of the day. I eat my meals, I tweet, I write my blog, I play some games on my computer, then I join Adam on the sofa to spend our evening together watching TV, broken by more meds, then I go to bed, the place where I spend the bulk of each 24 hours. Days are just days, no change, no differences, just days. In fact, my days are simply the filler between the hours that I need to sleep. One runs into another and they all melt into one, as the years now melt into each other.

I know that may sound dull and monotonous, but it’s not. There is a contentment in my life, and a happiness, that to an outsider will be hard to understand, but I am happy, truly happy. I know that I don’t have anyone who can verify this, as no one is with me throughout my waking hours, but I can put my hand on my heart and say that it’s rare for there not to be a smile on my face. I don’t mean one where my teeth are on display, but one that just lifts the edges of my lips and strangely, it’s hard to remove. Even when I go to bed, as part of my relaxation prior to sleep, just as I always have to consciously relax the muscles in my body, I have to remove that smile. What put it there, well that’s truly hard to explain.

For most, including me, the idea of losing my memory sounds like sheer hell. Losing those hard-earned narratives that make up our lives, should be the scariest thing that can possibly happen. All those people, their names and their impact on us, those places and the order that each locked together, are vital to our sanity, aren’t they? Well for me, it appears not. I’ve lived for years with those irritating moments when I find myself in some room with no idea why. Loss of short term memory is a pain in the backside, and yes, I can see without a doubt, why that can drive anyone up the wall. But then it started to step up until even Adam noticed not long ago that I could talk with total conviction about what I had done in the day, when he could see that I had done not one part of it. I eventually even had to admit that I thought tasks were completed, when the truth was, they hadn’t been started, but I’ve stayed silent until now about the loss of much more.

For a long time now, how long, I’m not sure, but it has to be years, I have been aware that things weren’t lost, just muddled. Events and people often felt disjointed and without subtlety checking with Adam I couldn’t be sure if I was right or I was wrong. But Adam and I have only been together 18 years, I have a lot of life that he can’t help me with at all, and as I was always on the move, I didn’t keep pictures or items that truly lock me into those times. When I knew I was heading into being housebound and that there was a good chance that my memory would go, I tried to put together a memory trail. I spent hours trying to lock memories to items within our home, memories that had no true connection to any of them. At first, it worked but over the years, it has all broken down. I can no longer even cover up the fact that without sitting here for hours trying to work it out, I can no longer tell you when each of my children were born, or their true ages. Those things that should come to me without thought, no longer appear without it, and even then I pretty sure that I get it wrong. Just as an example, last week it took me two days to remember the name of my ex-partner before Adam. We were together for three or four years, but for the life of me, I couldn’t translate the “T” in “TJ”, into “Timothy”, something that should have appeared with easy.

These are all things that should be worrying, things that just a few years ago would have had me in a terrible state, but now, somehow, it doesn’t both me at all. I know that sounds like something I should be truly worried by, as they are all things that should upset me, but somewhere in the past couple of years, I’ve accepted it all and without it sounding cold or callous, I quite honestly don’t any longer, actually care. Whether it is acceptance, or it’s just part of this whole process, I can’t be totally sure, but what I do know is, when you no longer worry, you’re happy. I’m happy. I just am, I’m no longer that worry wort, if things don’t get done, or don’t happen, what does it matter, as tomorrow will be here when I wake up, another day, month or year, all flowing into one. I can’t control my health, I can’t control how I feel, or what I do. I can’t control my future and I can no longer control my past, it comes and goes as it pleases so why not be happy, why not just smile?

 

Please read my blog from 2 years ago today – 30/01/2015 – Is it something else?

I was driven to bed last night by a combination of tiredness and pain. Not the pain that wants me to scream, but that long drawn out aches that there is no relief from. As often happens I was quite comfy sat on the settee for the first hour, then just after 8pm, first my left foot start to hurt around the outer side…..

Down sizing required

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At last, Christmas is over, done and dusted for another year. It’s a time of year that is hard to handle when you’ve lost your health so completely. Inside you want to have everything as perfect as those long past, but you know it’s totally impossible to get anywhere close. For me, the hardest thing this year was the trail of relatives. Don’t get me wrong, it was lovely to see them, especially as we seldom see them at any other time, but getting them to totally understand that limited energy, means limited ability to even just sit and listen to their chatter, is hard. My daughter Teressa and her husband John were here for two days and I got through their two five-hour visits tired but still feeling alive. Yet, having Adams Mother, sister, and his sister’s girlfriend here for four hours, drained me totally. I don’t know if it was the fact that I had never met Amy or that Alison and Jenifer rarely come round to call, but those four hours, in one fell swoop, took as much as the two visits from Teressa and John did, and more.

Both visits had been organised in advance, but despite that, I found myself confused and anxious about the finer details. I knew Teressa and John would be here for at least one meal, if not two and I didn’t want to have the expense of their last visit when we landed up ordering Chinese. It was nice but I honestly can’t afford another £80 bill. I don’t know how many times I tweaked the Asda shopping list before time ran out and I had to go with what was there. I had gone for a simple array of cold meats, pates, smoked salmon, and pickles, to be served with bread and crackers. If they were to be here the next day as well, well toast and pate would have to do. I have never before gotten myself as wound up about people coming to visit as I did this time. I guess, I am more aware of my health these days than I have ever done before, especially when it comes to my memory.

It was so good to have my daughter here again. There is something about our bond, that nothing can get in the way of, not time, not distance, not anything. We as always were instantly connected and leaving the two boys trying to get a word in edgewise, and trying to work out, what we were finding quite so funny, or possibly so intense. It has often been said that we are two parts of the same person, not just as we look alike, but our sense of humor and inflections of voice are almost identical. She though has the luck of being both healthy and employed in a job that financially means life can be more than comfortably enjoyable. We did though have our silences, they always felt as though they were down to me, as my brain kept going blank and I could find nothing to say what so ever. It’s not as though my life is filled with exciting things to talk about. No matter what I do or how I try, being housebound really does have it’s limitations. Despite the silence those few hours passed with ease, my fatigue was limited, but clearly there. In some ways, I think the silence allowed me to recover, to recenter and move forwards at my pace.

The visit from Adams family was the total opposite for me. The hardest part was trying to listen to their chatter, well it was his turn to be at ease and mine to be the outsider, part of, but not truly connected. The four of them were totally connected and I was lost on the edges, occasionally connecting but then lost again. I could feel that Adam didn’t want them to leave when I called it a day, but I had already gone past the three hours agreed on and I honestly couldn’t take any more. If final proof were needed, it came that night when I slept for 14 hours and Adam still had problems waking me. My alarm had been sounding for 10 minutes when he decided that he too should join in. but not even shaking me or his voice found it’s way through at first. When I did wake, all I wanted was to be left alone to sleep again. The three of them all together had drained me to a point I hadn’t expected, especially as all we did was talk.

You don’t really feel or notice your health changing. You can’t really measure it when you have been ill for so many years, that ill, is quite simply our life. You forget when one day runs into another so seamlessly that even their identity is gone, just what normal life really is and just what it really does to us. Two simple family gatherings, the sort of thing most people do every week, not full blown parties, not huge cooking marathons, just people in my home sitting talking, yet they were enough to drain what energy I could find. It’s days like these that show me just how ill I have really become. I never understood those stupid rules that hospitals have of just two visitors to every bed. They made no sense at all. How can it really make the slightest difference other than to the number of chairs that they have? Well, now I understand. Now I get the real reason. Now I see just how simply being surrounded by the healthy can truly impact on our health.

I wouldn’t change those three days as they were both important and fun, but now I have a much deeper understanding of my health, of just where I am on that scale of healthy. I knew already that my ability to be amongst people was diminishing, thanks to my carer and the district nurses, As much as I need them and even to some extent enjoy being with them, I knew that time limits were very much needed. Now, I actually believe that a second rule is needed. the rule of two at a time may well be the way of the future. Adams family proved what I thought already, that my brain quite simply can’t keep up and fatigue becomes a huge issue. We may love our families, but without trying to sound cruel or nasty, small doses has become a necessity.

 

Please read my blog from 2 years ago today – Right or wrong

I found myself in the middle of the night just sitting on the edge of my bed, I had woken up for no reason I could find and for equally no reason I decided I needed to sit up, I was sat there still wearing my earplugs…..

One direction

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I know that I mentioned a few weeks ago that I had managed to not just find to my surprise grab rails that I liked the look of, but I had actually got around to buying them. I had been looking on and off for rails for the bathroom, but I wasn’t going to buy anything, if, I didn’t like the way they looked. The standard plain white straight bars have always been offensive, they shout disabled in a fashion that grates to my soul. As I have said often, this is our home, not a hospital. The bars I had chosen, have a chrome finish so that they fit with everything else in the room. They also have an appealing “s” shape that makes them flow, rather and abrupt starts and stops, even though they don’t touch each other. There was, of course, one other problem to cover, getting them installed.

Adam has always been a highly reluctant DIY’er, and experience has taught us that the walls in this house, weren’t designed with anything being attached to them, at least not with ease. Victorian wall construction was creative, to say the least. They believed strongly in what wasn’t to be seen, didn’t matter, hence the fact that the materials used, have no consistency. In just a two inch space, you can go from a brick made of steel to one that crumbles away at your very touch. Add to that, that the strength of plaster varies from blown, to stable with no change in appearance or sound change when knocked, they make even hanging a picture a nightmare. Our personal tool box does contain a drill, just not one with the power to actually make holes where we want them, rather it only manages to put them where the walls comply. I did the only thing that I could, I turned to the web to find someone with not just the tools, but the will to get the job done quickly and cleanly. To my surprise, I managed to find several possibilities, not to my surprise, the best quote that I received, meant that my initial expenditure of £45 to buy the rails was now doubled, by getting them fitted. This is the unfortunate part of being disabled. If you aren’t willing to take the deeply unpleasant NHS offerings, you are going to have to find the money to pay. It’s not that I am looking for charity, but the costs of just living in your own home, start to mount up. I also think that the NHS are missing a trick, one that could help to supply them with a little more cash. They have the buying power to purchase in bulk, they could offer a range of choices, from free, upwards. Such a service wouldn’t only mean an income for them, but it would remove the stress that I’m sure results for many. Getting something as simple as grab rails right, matters.

My new fixture in the bathroom don’t only look good to me, and to Adam, they somehow manage to not look like grab rails, more part of a normal everyday space. Beyond that, the positioning that I have chosen for them means that they feel instinctive.

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I just want to point out, out bathroom walls are cream, the gloss peach, and the toilet is white, not varying shades of yellow and orange, but this is the best picture Adam managed to take. 

 

I don’t even have to think about using them, I find my hands naturally taking hold and willingly taking the load, something I have never experienced in a so-called “Disabled toilet”. I have found myself often been faced with a selection of awkwardly shaped objects, many that I couldn’t even reach and didn’t assist me in any way. By finding the right shape and putting them in places that work for me, not the OT’s of this world, I now have a room that I at last feel safe in. On top of that, Adam has even said that he, at last, feels relaxed about my being in the bathroom too. Yesterday he admitted, that even when he is at home, he has been sat on the edge of his seat, waiting to come to my rescue. He admitted that he had heard banging and clanging that he was sure was me falling or just being in difficulty and not knowing if he should or shouldn’t come to my aid. I also admitted that what he had heard, was probably totally correct, I just hid it, so he didn’t worry. They may have cost us a bit more than I expected to pay, but right now, I believe that they were more than worth it.

I freely admit, that I now feel far more positive about the whole idea of aids in our home. They are something that I have fought against for a long time, simply because of my personal experience of them. I have found myself in hospital on numerous occasions and when there being faced with things that weren’t only deeply ugly, but actually caused as many problems as they were supposed to help with. Finding something as simple as three pieces of steel that actually do what I want, has changed all of that. From here on in, I am going to blank out all the useless ugly things from my mind and I will search for what I want and need, not what I am offered, as there is a huge difference.

I don’t think that many appreciate the mental shift that it takes, to start putting such things into your home is huge. It is in many ways a public admission, that you are disabled. Yes, I know that anyone entering our home can see that straight away, as I am in a wheelchair, but wheelchairs can be temporary, bars screwed to the wall, aren’t. So far, everything had a temporary feel, such as the mattress elevator, it can be dismantled and taken away, as can the perching stool and so on. I know that three bars, doesn’t sound like much to many, but to me, it is like not just haveing disabled stamped on my forehead, but having it tattooed there. It is the final step, one there is no going back from, and I feel far more at ease about accepting.

 

Please read my blog from 2 years ago today – 19/04/2014 – Longevity, blessing or curse

There has once again been a lot of discussion on TV about the age people retire and how we receive or not, our pensions. Yesterday the government proposed a scheme that would tell all of us at retirement our life expectancy so that we can plan just how we are going to use the pension pot we have and how to be sure that it will last our lives, the TV channels have gone nuts about it! You would think that they had suggested that if you live past that point, you will be forcibly extinguished, not that they are proposed a truly useful system to help you make plans for your future life. I have never understood why people just don’t want to know how long they have to live, it is something that I have always wanted to know, even when I was fitter and slightly healthier I wanted to know. It isn’t that I am in a hurry to die, it is actually the…..

Inspiration for me

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I don’t know what got into me yesterday, but even after I finished my post, which usually clears my head, I found myself still feeling the same. Reading it back, was a huge mistake, I probably should have just left that for a few hours or so, but I didn’t. I found myself fighting tears, tears that had no reason or no result. I honestly felt so alone, it was painful. The stupidest thing about that is, I had Adam here. He is on a weeks holiday just now, so oddly, I haven’t been alone for days. Mind you, I guess that’s why that sort of alone hurts, I could have had a crowd around me, and I still would have felt the same. So I am happy to report, that today, that feeling isn’t gone, but it’s back in its place, part of me, but not all of me.

I am now on my third load of tablets, designed to help with the pains in my guts. The first two failed dramatically. The Mebeverine brought so many problems with it, that the fact that it did help in lessening the pain, didn’t matter. I was left with the worst heartburn I ever remember having. Getting someone who has no memory, to take a tablet twenty minutes before a meal, is now officially impossible. I either forgot to take it or my own speciality, I took it, then forgot to eat. That one produced the worst heartburn, but, even when I got it right, the side effect was still there. The night that it managed to scare me, was the one when I actually woke because I had a mouth full of sick. Not a little bile, but a mouth full of that day’s dinner. I’m just glad that I woke.

I am now on Alverine. This is just day three, and although it isn’t perfect, buy I feel so much better. There is still pain, but it is at the same level of pain as I get anywhere else in my body. In other words, it is at a manageable level. For the first time in about three or four months, I have just had two nights sleep without interruption. For a couple of years now, I have slept for 11 hours straight every night, then suddenly, I was awake every night in pain. I have become so used to it, that I had a set routine, I would go to the loo for a pee, head for the kitchen, have a cigarette and head back to bed. The problem with that was, that I never went back into a proper sleep. I would say it was a mixture of a dozing and moments of true sleep, which just isn’t good for me. If there is one thing that I need it is sleep. Right now, physically I feel better than I have in ages, which is probably why I felt as I did yesterday, it happened, because I could, I wasn’t tied up in nothing but extreme pain.

For two nights in a row, I have slept, nothing got in my way. Then this morning, I woke with the alarm, but at the same instant, I felt the pain in the left side of my back and the top of my legs. It is something that I get a lot, but it was just a bit of a bummer, to find that not all the pain was controlled quite as much as I thought it was. Right now, I’m still in that pain, lessened because I’m now upright, but I know the only thing that will clear it, is emptying my bowels, and that’s probably not going to happen for a couple of days. I know that I was probably just being over-hopeful, but if we don’t hope, what else can we do.

It was a long time ago now, that I made the decision that modern medicine was the thing, I was going to put my hope in. Having over the years, tried almost anything that I could get my hands on, that I could afford, I made my choice. For me, it was partly down to cost. Living in the UK, I have the benefit of free medical care. Living in Scotland, I also get all my medication for free too. Without a doubt, if I had to pay for everything, I probably wouldn’t be so quick to say, “This isn’t working please can we try something else.” I suspect, working or not, I would, at least, push on with what is partially working until, I had taken everything I had been prescribed, before switching. So I am in a luxury position compared to many, in reality, it’s the way it should be for us all.

I have to say the costs that others faced, wasn’t something that I even thought about until I joined social media. It was like crashing into a spike-filled brick wall. Suddenly I found myself talking to people who were having to choose between their medication and basic things we all need to just live. For me, that whole experience was extremely hard, I even went through a spell of feeling incredibly guilty. Here I am surrounded with medication for every aspect of my health, talking with people who didn’t even have access to anything beyond aspirin. I felt it so badly, that for about a year, I stopped talking to people on twitter at all, and closed down my Facebook account. Yes, I still tweeted, but I avoided actually responding and ran a mile from the chance of chatting. Almost daily, people tell me how inspiring I am and how much they admire me. Personally, I don’t get it, as to me, if there is anyone who our admiration should go to, it’s those who live our lives, without the care that we have. If for some mad reason all my medication was suddenly taken away from me, well, I don’t think I would be here very long.

Today, someone asked me how I managed to be so upbeat all the time. Well, now you know. It doesn’t matter how bad I might feel, how much pain I am in, I know that I am lucky. Yesterday was one of my blips, I wouldn’t be human if I didn’t have them. Yes, I was already a positive person, but the above is something that I never forget. I no longer feel guilty for the care that I get, but I do count myself as so privileged to live in a country that even cares at all.

 

Please read my blog from 2 years ago today – 19/03/2014 – A perfect life

Today so far is a good day! It actually feels good to just be able to say that as it doesn’t often happen, the last couple of days have been kind of draining and I have spent a bit more time sleeping than usual, I guess it made the difference, but I can’t really sleep more every day, as I just wouldn’t have time to know I’m still here and alive if I did. These days I sleep 11 hours at night and between 1 and 2 hours during the day, imagine taking that many hours out of your day, whilst still trying to be active in the world and to spend time with those you love.

It is probably the one thing that I find the hardest, just how little time I really have to spend with Adam. During the week, I see him for less……

 

 

 

 

Not quite beaten

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I can’t believe that I am still struggling after my activity the other day. The way I feel right now, is more the way I would expect if I had had a day out at the hospital. Being tired, I know is just part of my life, but no matter how I change the amount of sleep I have, or what I do in the day, recently, I’ve been even more tired than usual. It started a couple of months ago, but add in the effect of the increased Gabapentin and I am in a lose, lose situation, even before I added in excess activity. If l let myself, I don’t have the slightest doubt that if I went to bed right now, that I would sleep. With the new wake up time that I have, I thought allowing myself a straight eleven and a half hours sleep each night, would help me feel more awake. It appears though that the opposite is happening.

There are so many things that come with our health, just like the above, that leaves us sitting scratching our heads. Health often has one huge issue that we ourselves forget, it’s not always logical. Which basically means, there will always be elements, that will inevitably do whatever they want to. I have managed so well, until this point to control my energy levels. I’ve been ultra aware of my energy usage, tightening up on my bunching of activities, never just going to the kitchen for a drink, but going to the loo, cleaning my teeth and anything else I can think of, at the same time. I use as little energy as is possible, so, that I can complete everything I have to in a day, and not fall asleep in between each step of it.

Yesterday, I started wondering if I might have become lax, not paying enough attention to what I was doing. There was only one thing that came up quickly and stood out as an energy waste. I hadn’t realised how many times a day, I have to stand up, just to change the channel on the TV. No, I don’t have an incredibly old TV, just incredibly bad eyesight. To be able to read the names of the programs in the listings, I would need binoculars to see them from here. So once every hour, or more often, I am pushing myself to my feet, wobbling my way around the desk and out to the edge of my wheelchair, so I can use the remote control, then back again. It’s a total distance of fourteen feet, seven there and seven back, but the strain on my body, both arms and legs, clearly adds up. If I could change that alone, I believe, I would change a lot about how I am feeling.

I did look into this last year, but I was left once again with a problem. The solution seems to be an HDMI cable, running from the TV to my computer. Apparently once I instal that, I could see what was on the TV screen while sitting right here. Sounds simple enough, except, I can’t find out if I have and HDMI connection on my PC. So do I just buy a 15-foot cable and hope that one of the slots I can find is the right one, or just buy some binoculars? I was never one of those people who ever bothered about the media side of my PC, it’s not what I bought it for or was interested in and my brain just doesn’t want, to read any more stuff they call “help”, it just switches off and sleep becomes, even more, appealing. Why has life become so complicated? I thought it would be quiet, sedate and relaxing being housebound, it isn’t, it’s one small problem, followed by another. Most of them, like this, were never on my list of changes I ever thought that I would have to make.

I used to think that tired was a state of mind. That all you had to do was, give yourself a hard kick in the backside and get on with it. I did that for so many years, that I never even thought about it. This type of tired doesn’t work that way, it just drags you down and down. It does it because it’s not tired at all, it that monster called fatigue. Yes, I’ve adapted over and over to keep it at bay, to stay with my head, just above that line that says, “you’ve lost”. But, right now, I can hear it screaming at me, “Just stop, do nothing”. I can hear it, but, I don’t want to listen. I want to keep going, I want to keep living and if I stop, then what. Just occasionally, I try it, I do, I stop. It never lasts as I still have that other voice that says “This needs doing, get up, get going”. I fear, that if I totally stop, if, I give in for just one day, that I will disappear, cease to be me, and become, that invalid that I fought so hard, not to be.

I know fatigue, I meet it face to face at least once every day. Some days like today, it wins in tiny ways. In those gaps that I can’t explain. Those moments, that I find myself staring into space, with nothing in my sight and far less than that, in my head. I’d be happy to just be tired, to just be in need of sleep. Sleep cures nothing. It’s an escape, a place I go where there is nothing that needs doing, nothing that has to be said and the biggest blessing of all, I feel no pain. Yet, it steals so much of my life, I am wasting the time I have, by sleeping, that just isn’t right. My life is limited, to spend what’s left asleep, no that just isn’t right. There are things we can change, things we can adjust to make our life easier. Then there are things we want to change, but fatigue takes over, gets in the way and means everything stays the same. I’ve been here so often, that in some ways, it’s like an old friend returned, holding onto you tightly and tempting you fully, into its grasp. Fatigue is a well groomed and well-trained seductress, and I am ever weakening, messy human, what chance do I, or any of us, really stand.

So I will rest, I will tweak and adjust, and hopefully once more I will be restored, at least for a number of hours. There are no answers to this, because, there is no logic. Activity is a tiny factor, medications another, but health, is the biggest and there are no answers to that. I just have to find my way out of this pit, to climb back higher about that line and stay on the side of winning. A nap, another nights sleep, who knows it might just make the difference, this time, only time will tell. All any of us can do on a bad day is look to the good, and hope, that is what tomorrow will bring. You see, there is one weapon, one tool that fatigue doesn’t have, it, unlike us, doesn’t have hope.

 

Please read my blog from 2 years ago today – 30/01/2014 – Truly care

I have taken my first HRT tablet this morning, so now it’s a case of wait and see, not just on the hair situation but also to see if I feel any changes in my MS, the more I think about it the more sense it makes that there will…..