Wow my last 2 posts have been pretty depressing haven't they? But I strive to be honest and present a true picture of life with a chronic illness. Like I have said in the past we the sufferers are the only ones that can really tell you what it's like. We may not have a medical degree but we know our own bodies. I read some great advice today in a great blog laughingfrommysickbed.blogspot.com by a lovely lady named Irene who has taken a place in my heart so I hope she doesn't mind me paraphrasing (brain mush). She said that no doctor or specialist no matter how well researched they are will ever tell you to just listen to what your body is saying. Never mind graded excercise programmes or pacing if your body doesn't want to play ball it won't and if you don't listen to that then you have an all mighty battle on your hands.
Remember my post about physiology? About our natural instincts that we relied upon to survive. This is the way we are programmed so why do we so often ignore it? If why body says it wants to sleep for 20 hours then I figure that's what it wants. No, it probably isn't good but who says? Of course we should always try new things that are suggested to us. Hence my series of posts on what I learnt at ME/CFS clinic. We do of course want at least some relief and wish for a cure. Oh how lovely that would be! How many times have you gone into an appointment with raised hopes? Hoping that what they say, suggest, prescribe, inject, take out etc etc will solve all your problems. Okay, you probably know that it won't. Nothing is ever that simple but still there is that hope, that instinct to survive.
Today has been a completely bed bound day. I just wish someone would have told my bladder. Just sliding onto the commode when it was right beside my bed was worthy of some very inventive curse words. The day my elbows give out I'll surely be lost. They are the key to getting up. I have to say it's totally scared me. Doing very little gives your brain plenty of time to well think. To get carried away. To imagine that this will forever be your life. That you will always be weeing in a bucket. Oh shut up brain, you naughty sod. Don't try and bring me down too. Yes, I'm scared but there's always hope.
I guess it doesn't help that I look around my room and it's just a tip. It is clean though just untidy. Clothes are piled up (still some from Greece oops). I have various bits of nightware all around my bed because my tempretaure is tempremental (ooo never realised the connection with those words, dippy me). There's a new picture, well it's not a picture probably more art I don't know what it would be called but I like it and wanted something new to look at. Anyway whatever it is needs hanging but there's never a good time. I have loads of unopened letters and bills in my side drawer. Thank goodness I know what they are and for direct debits. And my calendar is still on March. However does it matter?
Like I said my room is clean. My bills are paid. No it's probably not conducive for good sleep hygiene. But these are such small things that in the grand perspective do not matter. Okay they could be sorted on good days and when I can I will, bit by bit. But on my good days I want to use my spoons to better my mood. To make memories however small. To laugh. Get downstairs. Socialise. Get out if I can. These will be the things I remember later on in life. Not whether my room was neat and tidy.
So to sum up the last few days have been testing in every which way. I think the neighbours might have thought Dexter was here. But let them. But you know what I still have fight in me. Even if it's just to get the right pain killers. And I shall heed my own words and many before me that laughter is the best medicine as is rest. Will have to research who coined that phrase.
Goodnight all
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