A week or so on from commencing my plan. Ive managed my short walks 5 days out of 7 this week, which is a good start for someone with M.E. 10 minute walks seemed to be just right, not too little, and not too much as I could complete the walk without stopping but most definately needed to rest by the time I climbed the two flights of stairs to get home.
I did push things a bit too far on Friday, I needed something from our local shops which are a 15 minute walk for me. There is a bench half way and I sat and rested 5-10 minutes . I managed to get to this bench on the way back and knew by that time I had pushed myself too far. Just a total of about 20-25 minutes was pushing my body too much. I rested 10 minutes and walked the rest of the way home, really struggled to get up the stairs. Pain followed on that evening quite quickly, although not too severe. I slept very poorly afterwards.
What happenned the following evening is pretty much the usual for me after I have been active - I often cannot sleep for 24-48 hours. I do not know why this happens, it just does. I ended up getting 1 hours sleep, but got woken up, then a few broken hours sleep dotted about over the next 12 hours or so. I cant catch up on sleep through the day easily just now as there are workmen doing work outside my home for up to 12 hours a day 6-7 days a week. Yes even from 9am on a Sunday, today. So my sleep patter is totally messed up.
I feel dreadful. I dont feel with it at all, kind of spaced out. The usual sore throat, aches and pains plus fatigue. However, trying to complete the smallest of tasks at home is completely exhausting - getting dressed resulted in me having to sit on the bed to recover from putting trousers on. Whether this is the result from walking too much on Friday or the combination from walking most days and the knock on effect of dreadful sleep, all on top of my usual symptoms? It is what it is. Basically I feel even worse than I have been. I have not managed my once or twice weekly get togethers with friends, resulting in seeing nobody but my daughter this week. I had been feeling very positive but now feel very low. I am not choosing to feel flat or low. I am thinking positive thoughts, but my brain isnt functioning, my emotions are flat, Im so completely drained. I have felt disorientated, and disconnected in the last couple of days, yet psychologically I had felt fine before starting my plan. I have had to mute the tv when my daughter speaks to me as I cannot separate the two, I can only concentrate on one thing at a time. I have felt mildly muddled at times too, most likely the exhaustion coupled with total messed up sleep pattern, lack of sleep. This is all the side of M.E that nobody ever sees in me, as I only see people when Im at my best.
Diet wise Ive eaten well, continued eating lean fish and meat every other day, but have not felt in the right place to stick to a weight loss programme. Ive continued taking my supplements.
Today, despite feeling my worst I want to get out to a garden centre to purchase something specific, its something I need to do in the next 2-3 days, as I have plans Im working on this next week. The bus stop is a good 10 minutes including a walk over a bridge, so a bit of steep walking and the same on the way back without the bridge. So just getting there and back will push my limits again. Walking from the bus stop and around the garden centre I anticipate 15-20 minutes. So basically to do the one thing that I want to do in the next 5 days is going to push me over my limit, into the boom bust cycle which I wanted to avoid. But this is a one time thing this year that I need to get done this week, ( photograph some plants for a photography competition that I would have to enter this week) so my choice is to not do something I love, get enjoyment out of it, have a chance at doing well in a photography competition and be completely exhausted for however long afterwards( usually 3-7 days), or stay at home, continue my plan and be exhausted any way and not doing what I love.
Given that being single and only seeing friends on average once a week because of my illness, getting bored stupid at home alone all the time, I am tempted to try to get the plants I want today, so I can take photos in a couple of days time and hope that some will be good enough to enter the competition. At least I wont be bored whilst feeling ill, I will be able to set photography equipment up bit by bit without tiring myself further really and take photos sitting down, then I can enjoy editing and sharing.What would you do? If I could afford a taxi there and back it would not be a problem. however, I am not deemed disabled or unwell enough to be awarded PIP as I can walk for 10 minutes, even if it isnt every day and even though quite obviously from this last week it is making me worse trying to do so each day. I am following the advice given by health professionals - to push myself physically. In fact they advised pushing myself more, cleaning windows etc - that one was hilarious - I had told them that one task is something I struggle to do more than anything so I was told to do it repeatedly. Which makes sense for a lot of illnesses but not M.E, why do the one thing that your body cannot tolerate, more and more to the point that you end up housebud or bedridden as a result? Yet there is evidence that this advice might be making people with M.E worse. I will stick with my 10 minute walks, if it helps in time great, if after a few weeks Im still feeling worse then I will stop.
Dilemas of going with the plan or actually doing what I love. What would you do? Stick with a plan that is making you feel even more ill in the teensiest hope it might build stamina and activity levels, but knowing it actually makes a lot of patients much worse or go back to the boom bust cycle and get to see frriends or do what you love once a week and really suffer afterwards.
Now I need to sleep...
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