Sticky Blood-Hughes Syndrome Support
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Life Vs. Pain

Just a small rant, I need to vent a little!

I'm starting to get seriously annoyed with my stupid body at the moment! I really don't know what the heck else to do with it. I knew I had a wedding to go to this weekend just gone so I spent the 5 days prior to it just going into work (part time, not too taxing) coming home and resting, pottering around the house and making sure I got plenty of sleep. I didn't even go to my usual exercise classes as I then use the weekend for recovery time which I knew I wasn't going to get.

Went to the wedding, was a long day but nothing particularly unusual. Slight fibro type connective tissue pain when I went to bed but nothing major.

Woke up Sunday morning after a good 10 hours proper sleep with full blown, reverberation hurts when I take a step, pulling clothes on hurts where it pulls against the skin, don't touch me or I'll kill you, connective tissue pain everywhere. Feels like someone put me through a mangle when I wasn't looking and I'm still aching like heck today after resting yesterday and getting another decent night of unbroken sleep.

I gave you sleep, I gave you rest, I looked after you. What more can I do you stupid bundle of flesh and nerves?!

Normally I'm pretty chilled out and accepting of my body and it's condition(s) (Hughes Syndrome and Lupus) but there are times when I wish to whatever is out there having a laugh at my expense that I were 'normal'. I've potentially got another 50+ years of this rubbish which is a less than inspiring thought at times!

6 Replies

Oh dear a nasty old flare, lets hope it leaves you as suddenly as it came about, we can all sympathize with it, I hope you feel better soon, and if not perhaps a check up with your most trusted consultant? MaryF


Thanks Mary, I need to see my GP about changing my meds for travel so I may well bump it up my list of priorities for this week!


Life is cruel sometimes. I hope you feel better soon.


I know exactly how you feel. Woken up today with extreme pain in my head, wrists, fingers and toes.

Hope you feel better soon...... BIG HUGS xx


Thanks guys, it's starting to get a bit better now. I can actually wear real clothes today rather than just about tolerating sweats and yoga gear! Hope everyone else is hanging in there :)

1 like

I have never suffered from that all over pain -- just fatigue and localized joint pains. But I totally relate to your exasperation with a spoiled body. I have a knee who has, in dreams, explained the injustice of his (I assume he is male since he is spoiled) position. He is a knee and must bear weight every other step of the day. The ear lobe just sits there and does nothing -- doesn't even move as the nerves and muscles in that area don't connect. The knee wants to be an ear lobe. He says its time to make that switch.

I sympathize with his plight, but that doesn't mean that Me, the central consciousness of our body, can reassign him. He's a knee. And when I'm alone with no other human to hear my insane rants I audibly shout: " YOU'RE A KNEE. LIKE IT OR NOT, YOU'RE A KNEE. I'll message you with NSAID creams. I'll baby you with braces. I'll rest, ice, compress and elevate you 2 - 4 times a day. But like it or not YOU"RE A KNEE! And if you keep misbehaving like this you're going to get replaced."

Just one joint (last year it was the hip -- it got replaced.) But I totally relate to the exasperation of having a body that won't do its job.


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