time to blog again?

I feel it is. I”m not sure what I should blog about at the moment though but I think it would be useful (to me at least). It’s been so hard to blog since I became too unwell to have much going on but maybe now is the time to blog the most – if I am blogging for myself that is. I think I stopped as I couldn’t find anything interesting to say, I have more than enough going on with my illness without blogging about it too. Maybe I should have just carried on though and maybe that would have helped me.

In truth, life is tough. I’ve had a couple of years of finding everything tough, sometimes it’s been too tough to get out of bed, for days. Sometimes getting out of bed has been all I’ve been able to manage. No one saw me then, except my family, and by family I mean those that live with me. I don’t like to share, or to burden, but not sharing probably made me more of a burden on those within my home. Poor Boo, capable before her time, making lunch for her and her sister, just ‘getting on with it’, poor Yogi, coming upstairs to love me, to play games with me, sometimes just to snuggle up. Maybe others would have come in to help but that’s not the experience I have. Where (who) I’m from we don’t do that, we don’t ask for help and if it is offered we make sure the person offering realises that we really don’t need help, even when we do, when we desperately do.

So, what’s wrong with me? Nobody knows, they thought it might be Multiple Sclerosis because that’s what it looked like, but the MRI didn’t support that, they’ve repeatedly tested for Lupus, but the blood results aren’t quite right, I had a sky high Rheumatoid Factor at one point and so they pinned Rheumatoid Disease on me, but now it doesn’t fit, they still toy with Lupus, and with Sjorgrens. Back and forth, back and forth. They’ve settled for ME, Myalgic Encephalomyelitis, and RD. The drugs I’m on are pretty…. awful. My hair has thinned so much, but I don’t have joint pain anymore, I seem to (finally) be a bit more mobile. I’ve been taking immunosuppressants for over a year now, and I’m not fixed. Sometimes I takes drugs to stop me feeling sick because the other ones are making me sick. I only took them so they’d fix me. I keep taking them as I’m worried that not taking them will send me backwards (and I definitely feel a bit further forward even if it’s only a couple of steps). They jiggled the drugs in August when things hadn’t improved at all, there was definitely improvement there – that’s when I started the Plaquenil (the Lupus meds), and then another minor adjustment in January seems to have helped also. I can look ahead with optimism. The optimism unfortunately keeps waning, it’s ok on nights when I can sleep, on nights when there’s no pain and I’m not too exhausted to sleep, but on nights like I’ve had this week when sleep doesn’t want to come I feel less optimistic, as though, at 40, I’ve had it, my best years are behind me and the future is one of wheelchairs and dwindling health.

One thing I am thankful for (health wise) is that, despite sometimes feeling a bit down about it all I haven’t become depressed. Sometimes (often) I am angry or saddened by my situation but I don’t feel depressed. I have been in the past, and this is how I know I am not now. I am truly thankful for the fact that my physical health has not managed to destroy my mental health. Yes I could be happier, yes I feel miserable at times but I don’t feel that horrible miserableness, that hopelessness that comes with (my) depression.

I am also thankful for my family, these folks who have been here and helped me, physically, emotionally through the last couple of years, the girls have been amazing, Ed has helped me more than a daughter should help her mother, Nige has been so much more than a husband, the four of them have been my carers. Even tiny Yogi who has just turned 7. Nige is amazing, I’m not sure how I would have coped without him. Without his love and support, without his unending optimism (which I know has taken a battering) I don’t know where I’d be right now, but the chances are it wouldn’t be here, writing this blog post.

I leave you with Bob, upside down.



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