Weekly roundup

I can’t believe that this week my blog received its 700,000th visitor.  Holy crap!  I know I’ve said this before, but the thought that sickly me, lying here in my bed in the wilds of the Lake District can reach hundreds of thousands of people from 170 countries around the world literally blows my mind.  The internet is *awesome* 🙂

My new photo pages have proved popular, though I apologise that only a few of the actual pictures are new.  I have now added a few paragraphs to the bottom of the mast cell photos page to explain the difference between the reactions a healthy person would have to things like being hot or being bitten and those experienced by someone with a mast cell disorder.

My busy “holiday” last week caught up with me on Wednesday and I felt like I’d been trampled by a herd of wild elephants.  After 22 years of having M.E. I’m usually very good at knowing how far to push my body and bad days are now rare rather than an everyday occurence, so it comes as a shock when I wake up feeling so ill – you really do forget how poisoned and poleaxed M.E. makes you and how unable you are to do anything, ie speak, think, sit upright, let alone make something to eat or have a bath.  It didn’t help that I had my period which this month was pretty unpleasant, or the fact my hormones have given me rampant insomnia for the last fortnight which is inevitably going to make me feel rubbish.  I have a feeling my hives might now come back because that’s what happens when I don’t stay underneath my ME-induced glass ceiling.  Some people with M.E. would call this a “crash” and some would call it a “relapse”.  I wouldn’t call it either.  A “crash” is having to say in bed for at least a couple of weeks and a “relapse” is having to stay in bed for at least a couple of months, often much much longer.  I try not to be overly dramatic about my bad days, even if they last for several days, because they really are just bad days and nothing proper rest won’t alleviate.  If I don’t rest, however, my bad patch risks becoming a crash or a relapse and I’m very aware of that.

Because I’m so unwell I haven’t done much, but this weekend I’d pledged to man a stall for 2 hours each day at a large annual photography event organized by my Camera Club.  I was looking forward to doing something different and meeting new people, so dragged my ass out of bed to attend.  I did enjoy it, but it was sodding hard work and as each minute ticked by I could feel my energy draining away like water down a plughole, my body getting heavier and heavier and my brain getting muddier and muddier until just speaking a simple sentence was beyond me.  For once I must have looked as shit as I felt because an acquaintance I don’t even know very well was there, took one look at me and said “you’re flagging, get yourself home” and I had to agree.  Trouble was, that was yesterday and I still have 2 more hours to do this afternoon!

May is Ehlers-Danlos Awareness month and, coincidentally, M.E. Awareness month and I have done nothing to highlight either disease.  I think, after all these years, I’m just more realistic than optimistic about how much people are interested in the fact I’m ill.  On the whole Joe Public doesn’t care and won’t care until someone they love has either disease.  When I was healthy I wouldn’t have read a post about someone being sick either or I would have read it, thought “oh that’s a shame, poor thing” and gone back to my plans for what I would wear out that night.  It’s only when influential people’s lives are affected by disease that things change.  Ronald Davis wouldn’t have researched M.E. if his son Whitney didn’t have it, just like John Caudwell wouldn’t be ploughing millions into Lyme if his family weren’t affected by it.  Putting something on my Facebook page is pointless because I’m preaching to the converted – my friends and family already know I’m sick and if they haven’t bothered to find out about my diseases by now then they’re clearly not interested.  Even I find reading endless posts about devastated people’s lives depressing, to the point where I skip right over them (I know, I’m a disgrace but at least I’m honest 😉 ).

On that cheerful note I’ll try and get my achy, painful, foggy, exhausted, sick arse in gear.  It would help if Bertie didn’t wake me every single morning at 6am demanding his breakfast, particularly this morning when I hadn’t gotten to sleep until after 3am!!

 

 

 

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One thought on “Weekly roundup

  1. Sarah

    Well done you on achieving what you did. I was told to write a list of not what I wanted or needed to do, but to write a list of what I’d achieved. The only problem is what with my fuzzy head is I forget to write lists!
    You say you haven’t done anything to raise awareness but what do you call writing this blog!

    Liked by 1 person

    Reply

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