Not quite beaten

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…..





Everything in slow

Another night of lying in my bed wondering why I had eaten what I did earlier that day, this time it was my right side not my left, but it was that which made me find something odd. I laid my hand on both sides to work out if the pain was an exact mirror image of the day before, it wasn’t, but it was then that I found that my left side was still sore to the touch, as though it is bruised internally. I have checked both sides this morning and both now have the same to the touch bruised sensation. This to me is the first clear sign that what ever is wrong with my gut, it has to be my MS, as this is exactly what happens with bad muscle spasms anywhere else in my body. I have had muscle cramps in my stomach before like anyone else gets, but a spasm is different from a cramp, as it can’t be released until it wants to let go, if you rub a cramp or make the muscles around them move, usually the muscle relaxes, spasms won’t relax until they are ready, there is nothing that makes them release. The pain in the last couple of nights didn’t respond to massage or stretching, not even to my favorite release of pushing my fingers deep in to the muscle, or anything else. The pain was intense and it has left it’s shadow along with I guess internal bruising. The messages that should make my gut work, have been screwed up for nearly a year now and this seems to be the next step, crazy spasms that just lock and grip allowing nothing to move at all. Anther part of the puzzle I suppose and something to report when I eventually get the appointment back at the hospital.

This morning is like every morning just after Christmas, some what flat and some what dull in it feeling. Adam is working as he would on any Thursday so I suppose that is all part of the dead feeling in the house. It used to be the dead end of the month even more as there was that knowledge that soon the decorations would be down and the house would look as dull as it feels, at least there is none of that feeling as no decorations went up. It’s strange how the memory of feelings stay with us regardless if we change the reality, no decorations to go, but still I feel the house will be duller, less alive and less electric for another year. I am not sure about the condition called “SAD”, if it were fact I should be in deep depression as I haven’t been out in daylight for nearly six years, but I do believe in the fact that after all the excitement of Christmas, we all feel down in late December early January.

I am looking forward to being able to get my sleep pattern back in order, just going to bed late on a couple of nights seems to have knocked me, you would think that I have been staying up until after midnight, not to just after 10 o’clock. I always believed that the older you get the less you need to sleep but mind you I hadn’t added in the extra’s that I have, maybe it is normal for some one like me. I am finding it moving more and more onto my list of life’s frustrations, I have so much that I want to do each day but my time to do it in gets less and less. The more that I add to my life, the more it seems that my life tries to take it away, I don’t have the energy that I had even one year ago. I am slowing down in everything, from my energy levels to my thinking speed and my actions. The more tired I get the slower I walk and the slower I live. I can only wonder what the next 12 months holds for me and how I will be in December 2013.

A plan is formed

It was and is pride that wouldn’t let me ask for help and my writing it all down, then posting yesterday with the knowledge that Adam would read, had the effect of me bulling myself, and it worked. Adam and I spoke last night and we are going to try something between ourselves to see if it will make any difference to the situation. We hadn’t discussed any of this before as I hadn’t wanted to talk about it, being independent and pigheaded can be useful but it can also be damaging. Adam is going to buy a calendar and we are going to plan out what has to be done when, unlike the check lists I have kept myself and landed up manipulating this is going to be where Adam can see it, remind and bully me into doing what has to be done, just as he already does when it comes to food.

I realised when we were talking that a large part of my forgetting is caused by another problem that I can’t actually do much about. I get exhausted easily as you know, so I have a system now of not doing one thing at a time, as in if I need to get a glass of coke I wait until I have one or two other things to do as well like go to the toilet, before I move. That way I waste as little energy as possible as I am doing as much as I can in just one trip away from my seat, the flaw is that I forget some of the things on my list, or worse still, mark it as done, when I have done nothing other than briefly thought about it. I now have some work to do today and over the next few days to see what I can do about it, I have already found one thing that I see why it goes days from when it should be done, to being done and it is a simple one to fix. I keep my medication in the kitchen where I have a cupboard big enough to take it all and I need to be in the kitchen with all the meds out in front of me so that I know I have asked for them all. We have phones all around the house but only the living room phone has stored numbers on it, so to call my doctor I need that phone, problem. I have to keep walking back and forward to sort it all out. If the kitchen phone had the number on it, I wouldn’t need to use up energy or put it off until by some miracle I remember to take the phone with me. I have spent the last 4 days putting that one off as well, I am sure that a lot of the problems I have daily can be helped a little if not a lot by simple changes, others well we need to think about them.

I don’t want anyone here in the house with me as I really don’t think I could deal with it, strangers stress me out more than anything else I have to deal with, I want to see if we can sort it out well enough, now that both of us know what the problem is, two heads may be better than one as they say. It is going to take some thought and some care but I hope there is an answer that means I don’t have to have an outsider checking everything I do off on a list and telling me what to do, like a child who doesn’t know better. If it doesn’t workout well then we will have to think again. I know I need more help than I did a year ago, or even 6 months ago but I need to have a feeling at least, of having some control of my life, for as long as I can. I am lost and I am scratching around trying to find solutions but I am still a long way off from lying down and saying you win.

Life energy gone.

I am struggling again, the past few days have just wiped me out and have supplied again the proof that I just can’t manage outside my routines. It isn’t that major things have landed on me or that I have been trying to push myself, it is just a chain of small things which have happened. with the result of my being totally wiped out and in increased pain. I suppose this is really a good example of how little it takes to push the downward spiral button.

Adam has been on holiday for the last two weeks and it was his mothers birthday on Wednesday, so there have been increased phone calls and disruption to routine. On Tuesday afternoon I headed of to bed as normal, I was already really tired, more than normal so those 2hrs of sleep were set there as a golden point in my day. Before I went Adam told me he might not be there when I got up as he was going out to buy a Birthday present, with that in my head and having set my alarm for 2hrs, I curled up and tried to find the right position for the pain to be low enough so I could sleep. I was woken not by my alarm but by the telephone ringing in the living room, we have the ringer in the bedroom off so that just one or two rings don’t wake me, but it did, I listened to two more rings then answered assuming this meant that Adam had gone. The clock showed I had only been asleep for 25 mins, the call was for Adam but he was in the bathroom not actually out at all. Once woken I can never go to sleep again so I got up and switched the PC on for the rest of the day. Although feeling really tired I stayed up to my normal time as I have learned over they years that sleep routines are important, mess about and I get messed up.

I woke on Wednesday morning at 5:15am, Adam was snoring loudly in my left ear. I tried but that was my night over! At 9am Adam left the house to spend the planned day cycling with his Mum, the weather was wonderful so I knew they would have a good day. My morning was wonderfully peaceful, but I was struggling to get through to 2pm and my daily nap, Adam called me at lunchtime, just as he would on a work day, once I had spoken to him, I was clear to go to bed and get my now much needed 2hrs. No I didn’t, I got just an hour, the postman rang the doorbell as I had to sign for a parcel for Adam. Another nap killed, I now just had to wait for Adam to be home at 8, which of course he didn’t it was actually nearly 10pm and he came home clutching some after-sun, he had really badly burnt himself. By the time he had a shower and we put the first coat of cream on, waited for it to dry in and added the second, it was 1am, all the rubbing actions had destroyed both my arms they felt heavy and moving them was painful. I slept like the dead through to 7am. Yesterday included more applications of cream and a proper 2 hour nap, but the damage had been done and I spent all day heading down and down.

By last night I was sitting on the settee, I didn’t know what to do with any of my limbs, both my ankles were triple their normal size and the skin was tight and painful, every muscle in my legs were screaming at me, some with a heavy over used feel, others with sharp screaming spasms. Sitting was also making the pain in my buttocks and upper thigh almost unbearable and again both my arms felt dead, I could move them but they just wanted to lie uselessly where ever I put them, happy just to be left there. My left arm was a complete mess and still is, I can’t even lift a glass now, it just doesn’t have the strength. The muscles in my spine were twitching and throwing sharp stabbing pains into the mix of exhausted muscle pain. I could find no peace and no comfort anyway. All my meds taken plus the extra one, I drank 3 large gins and fell into bed at the normal time, but with a feeling that I just wanted anything possible to take my body away, switch off all sensors and give me some peace. My cocktail had done it’s trick and I slept.

Today, well the pain levels are much lower but I feel like a zombie, there is nothing really there as though I am existing in a small space in my head and the rest of me, well it isn’t really part of me. A few hours lost sleep and I am destroyed. This is life with MS, this is what happens if something small and unimportant to the rest of the world, the things you might actually not even remember having taken place, can take me and destroy my life in a few hours. Right now I could give into it with ease but I know for me that is the wrong thing to do, I have to just keep going, keep doing all the things I do and hope that things will today allow me to head for normality. Anything could happen that will not allow me to do that, I just have to wait for the day to unfold and hope that it will remain quiet and will allow me to rest and return to the world.