It all started in 2014. I would occasionally get random, migrating pains in my hips, thighs and arms. It was quite painful and alarming. Because it never hung around long, but just came and vanished quickly, I didn't do anything about it. It wasn't very frequent initially.
By November 2014 I was in constant pain. At this point I went to see my doctors, but they couldn't help me. They did loads of blood tests and couldn't find anything wrong. They were frustrated and had no answers. So they just sent me home with painkillers. Months passed, but the pain didn't.
A couple of days ago we had some gorgeous sun after a few dark and dreary days… Here I’d just got up and was getting dressed when I realised how warm the sun was and decided to sit right there and collect some sunshine D! Only managed ten minutes in that chair, but it was lovely and warm.
My flat is so tiny, here I’m sitting right in the middle, halfway to the bathroom (top right), kitchen (behind me) and my bed (on the left side where photo is being taken from)… You might be able to see my walking frame standing on the right side of me too…
I love the sunshine so much, the warmth really brings a sense of wellbeing and eases the aches a bit. Not looking forward to a long winter, but it will make those sunny moment that much more amazing!!
Hopefully you can’t tell how horribly hairy my legs are or how one has been partially epilated while the other remains fully furry! Just had to stop after three lines up my leg… Take it in shifts. Might do some more today actually.
I know it’s not necessary, like painting ones nails, but it does make you feel better… Well, it makes me feel better anyway. Still hate seeing how my legs have deconditioned so much, no shape, no tone or muscle, just skin and bones which are now easily felt – it’s grosses me out that I can feel my own skeleton!! lol… But I know that one day I’ll be able to do a bit more activity and rebuild my muscles again. Till then it’s a matter of making sure I don’t lose them completely and then lose the ability to move myself.
So Maintaining movement, however little it might be now, to keep the joints and muscles as mobile and strong as I can now. Without overdoing things and making my general wellbeing worse. It’s a fine balancing act trying not to boom and bust… I tend to do too much and crash.
So grateful for all the help I get at home (my sis) and through the NHS (my therapist). PraiseGod!
Three years ago today I took this photo of the sunrise and added the devotional message for the day. Today I’m sharing it as I remember the beautiful image painted in the devotional of how God lifts us up by His strength. On wings like eagles…
Today marks 18 months of this CFS. At least 18 months in this severe housebound state, we imagine I had it milder for at least 6 months before this.Continue reading
You might be wondering why on earth I'd write about the symptoms of ME/cfs when everybody knows Chronic Fatigue Syndrome or ME is about always being tired. What most people don't know is that this neurological illness causes dozens of unrelenting symptoms that fluctuate constantly and are quite unpredictable. The very least of these is an unfathomable exhaustion at the slightest exertion!
Fatigue is the least of our worries - let me share with you the list of symptoms that ME patients have to deal with on a daily basis, you might just be surprised at how strong we really are... not at all the lazy, weak, not-trying-hard-enough people that the general population thinks we are! We are warriors fighting constant battles within our own bodies every minute of every day.
When unforeseen problems force me to go out despite severe ME/cfs, things can get pretty rough.
I had to go out today, needed to send off some paperwork, but my printer ran out of ink again - just changed it about two weeks ago! I needed to print off a load of sheets, so I had to take a bus to get that done at one place, then off on another bus to find a post office to send it.
By the time I got to post office my legs were not working properly anymore, it was like I was wading through lead or mercury, let's just say Nutella (have to keep things positive!). I had shooting pains all over the place, so was reduced to waddling at snails pace (seriously) at one point I thought I wouldn't make it across the road, but the bus driver was patient and waited for me to get safely out of his/her way.