Tag: 2012 Page 2 of 4

Well the past few days have involved much rest and frustration. I’ve rested for the majority of the day, attempted to do some small things like a children’s cross stitch…which I messed up and almost threw across the room in frustration! Also simple sudoku puzzles to try and keep my brain active…this also resulted in the book almost being thrown across the room when I’d spent 2 hours on it, and only done half of it! Oh well things can only get better right?!

Today has been a little better in a way, not feeling quite as sleepy (well not this morning) so decided to actually have a shower, BIG decision that was as although I have now got a shower stool I haven’t assembled it yet. Also knew my friend was coming round this afternoon so didn’t want to do too much in the morning. Anyway shower was a success-ish couldn’t brush my hair afterwards as I’d used all my strength washing it, so had to ask my lovely Dad to do so.

Also found I’ve developed a cough, think it’s the same cough I get every winter after I’ve had a cold/virus – they seem to irritate my airways and I get a lovely sounding barking cough! Normally speaking I end up going to the doctors to get something to settle it, which I might have to do in a few days if it hasn’t settled down itself. Really taking it out of me though.

This afternoon my amazing friend came round to visit, she’s stuck by me through all the tough times, visiting when I was at my worst. When I’m not too bad we go out or I go to her place but if not she comes to me. We had a good catch up as it’s been a few months since we last saw each other and had a great time!

Now however I am shattered, kinda want to sleep again and all my muscles are starting to hurt from coughing!! Can’t remember what I did last winter to ease the pain of that, around my ribs is the worst area. I’m sure I’ll work it out eventually!

Cold is really getting to my joints, and the cold air is making that cough all the worse – the front door only has to open a little and I end up having a coughing fit! Standard painkillers are actually pretty useless on this joint pain so might have to ask the doctor about some.

Think that’s about all that’s happened these past few days, resting is quite a boring activity it seems!!

Well I’ve had to stop taking Naproxen now, as I think it’s making me worse – lethargic and more tired (if that’s even possible!!!) So I’m now back on standard Ibuprofen…after 24 hours without painkillers I’ve realised I definitely need to take some – I could barely move for pain at times.

The Ibuprofen is taking the edge off the pain but I am still in so much pain every little thing is a struggle. The cold weather is getting to my joints making them hurt even more than they do normally so I’m spending a lot of my time under blankets.

I have suffered quite a big relapse it seems, I use the Association of Young People with ME’s functional ability scale (available here: http://www.ayme.org.uk/functional-ability-scale)as a guide to how severe my ME is. This past year I have been at about 60% most of the time occasionally worse, occasionally better than that. Right now I am at about 40% and some of the symptoms that have come back are taking a lot of getting used to – I’m struggling to stand for more than 5 minutes without getting dizzy, showering has become very difficult again, my legs keep buckling beneath me and I’ve almost fallen too many times to count.

I’m keeping positive though, I was 30% when I was first ill and look where I managed to get to! I’ve been here before and improved so I can do it again, it’s just so hard to adapt to the things that could be done easily earlier in the year but have now become such a struggle again.

I’m adjusting to having less spoons each day as well – If I haven’t mentioned it before The Spoon Theory is brilliant (available here: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/) It explains how every activity has to be planned for, if something unexpected happens it can cause days of having much less energy.

I wouldn’t wish my life on anybody, everything is such a struggle at the moment but a bit of understanding goes a long way. It helps boost the positivity knowing there’s people there who care, will listen and be there through the tough times as well as the good. I’m so grateful to all my friends who are there right now and putting up with all my moaning, they’re helping me get though this tough time and keeping my spirits up!

I just need to scream right now! I’ve only gone and got another virus on top of the ME!!! Arrrrrggghhh! It’s really knocked the stuffing out of me!

I’m having to use the wheelchair more out and about, struggling with the stairs again and generally life is just that much harder! Hoping I’ll have the strength to get through this, I’ve surprised myself before so I guess I can probably do so again!

One of the most annoying symptoms that has come back with a vengeance is dizziness when standing for prolonged periods (and when I say prolonged periods I mean 2-3 minutes cleaning my teeth or whatever!) Causing me to almost faint!! It was on of the first symptoms I ever got with the ME and was the most annoying then, hopefully it won’t remain for long this time!

Some of the other stresses have eased a little, but generally life is still seems to be throwing everything at my family right now adding more and more stress!!!

Oh well, we shall survive it all somehow. Find strength we never knew existed within ourselves and be stronger than ever when things improved and we come out the other side!