One of those days, when my concentration is non e... - LUPUS UK

LUPUS UK

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One of those days, when my concentration is non existent and any noise is hurting my head and ears!!!! On top of an active 4 year old

Lisalou19 profile image
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Just one of them days, where fatigue is so bad but unable to sleep!!!! I can’t focus and my little boy is simply playing with toys, the noise of which hurts so much! It’s these days I have no life line for help :-(

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Lisalou19 profile image
Lisalou19
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whisperit profile image
whisperit

Hi Lisalou,

How's it been going since you first posted?

It can be such a lonely place, can't it, especially when people can't *see* anything that shows them how horrible you feel?

Stay kind, forgive your boy and yourself. Is there anyone who can share the work a bit - help make the tea or bath/bedtime? You're doing the best you can. x

Lisalou19 profile image
Lisalou19

I’m not always on here lol, just posted some photos of my hands.

I took steroids this morning, the foggy brain is usually my first tell tail sign all is not ok.

I put my strong head on and went for a walk to get some fresh air with my son. Although I find it too strenuous, I also recognise that sitting about is going to send me into a down ward spiral.

I’ve perked up loads, so I’m sure the steroids have kicked in. Normally I start to feel a burning sensation by now but that is not happening. Abit of a blessing.

I’ve tried to tackle this illness by only taking steroids when I literally cannot cope. I saw a rheumatologist 2 weeks ago and he advised me to take them as soon as I feel anything that doesn’t feel right. This appears to of worked. (Today)

I’m still extremely fatigued, but it’s almost my bed time. Again I survive another day. It really does feel such a lonely place at times

Xx

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