Smiling Clare

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!

Well it’s been quite a while since I posted on here, the past month and a bit have been incredibly tough. I don’t know what I’m doing or what day of the week it is most of the time.

Since I last posted I’ve had no end of stress to deal with, a limited amount of sleep and am currently having a blip with my illness. To be quite honest I don’t know how on earth I’m coping or even if I am. Right now every time I think things are improving something happens which makes things worse.

I have managed to finish my final assignment for DB123 and got it submitted in time, I know it’s not my best work as my health had already started to deteriorate as I was working on it, but it will have to do. Lets just hope it’s good enough to pass…only another 5 or so weeks till I find out!

I’m pushed to my limits right now, because I have been helping out around the house quite a bit in the past few months before I got worse…it still seems to be expected of me and although I don’t hide how ill I feel it just seems that because I could do it before I should be able to do it now. I’m trying to learn what my baseline is again but with things being expected of me all the time it’s difficult to do so.

Today I’ve done a lot of housework despite feeling like someone is sticking needles/pins/knives in almost every joint I have. I’ve now collapsed onto my bed hoping for a little respite but considering I’ve taken painkillers and they haven’t done much I don’t hold out much hope.

One thing I’ve learnt over the past month is that I’m stronger than I think, I have some amazing friends both ill and healthy who have stuck by when the going got tough and put up with me moaning and venting about how tough life can be. I’ve also found that a sense of humour always helps on the darker days…when nothing seems to be going right. Laughter really can be the best medicine then. 🙂