Weekly roundup

This week seems to’ve been a tough cookie.  My mast cells are still having a field day, my butt is covered in itchy hives, I feel nauseous every second of every day, I’m not sleeping well and I’m having reactions to just about everything I put in my mouth.  I’m so angry at this disease I want to meet it in a bar and fight it til it’s lying in a bloody heap on the floor.

I’ve also been very MEish, though if my theory is correct that ME is some kind of mast cell disorder this comes as no surprise.  I have a sore throat (which these days I hardly ever get), feel weak, achy, fluey, foggy and have the energy and stamina of a new born.  Consequently, the pile of chores which has been building up all year just got a whole heap bigger and I’m feeling even more overwhelmed by it all than usual.

I had my annual eye exam yesterday, and need new reading glasses.  Two pairs, plus my eye test, cost £200 ($300).  I went for cheaper glasses last time, and the lenses on both pairs chipped in the first 6 months, so I’m not making that mistake again.  I’m already overdrawn for the whole of May, which hasn’t even started yet, so where the hell I’m supposed to find that sort of cash I have no idea.  Fuck-a-doodle-do.

Someone left a comment on my blog this week that went something like this: I’ve been ill for 4 months, but I’ve healed my gut with probiotics and various herbal supplements and now I’m cured.  You lot need to get off your antihistamines and sort your gut out and you’d all be well.”  Are you fucking serious?!  I know I should have written some diplomatic, educational reply but after 2 decades of listening to shite like this I just can’t muster up any tact.  She got the short end of my ire and I make no apologies.  I’m fed up of trying to be nice and take other people’s feelings into account, when they clearly don’t take mine into account when they write drivel like this.  Jog on.

EDS UK posted this link to a piece by the parent of a child with HEDS.  It’s wonderfully written and explains, without melodrama, what life is like for both her and her daughter.  Life as an adult with both EDS and ME is difficult enough, but to have either disease as a child is……………I can’t even think of the words.

The highlight of my week was Wednesday, which was my best friend’s 40th birthday.  Her partner works away 4 days each week so my friend was on her own, which was lucky for me as I got to spend her special day with her 🙂 .  We went up the Lakes, had a gorgeous lunch out, then sat for 3 hours by the water in the warm spring sunshine.  The food made me nauseous as all hell, and I felt so ill by the time I got home I thought I was going to pass out (and I’m sure so did my mate, who also has ME), but I still had a brilliant day in fabulous company and I’ll never forget the look on her face when I pulled out a cupcake, glowing with a birthday balloon candle, and my parents and I all sang her happy birthday – she was mortified 😉

 

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2 thoughts on “Weekly roundup

  1. d

    Jak

    I agree with you – anyone who was sick for four months and then “cured” themselves, likely wasn’t sick at all. The problem is that they have their head up their *** and the probiotics helped with the passing of it. With complicated and rare illnesses, it takes years to figure out all the possible triggers, and sometimes you just don’t know what is causing the flare. Not what most people want to hear but it’s true.

    I hope this flare is on it’s way out for you. I am very glad to hear you were able to enjoy a lovely day out with your friend. That landscape is truly great medicine.

    d

    Liked by 1 person

    Reply

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