Went the races yesterday ....weather was beautiful ...got a couple of wins ....but was so frustrated at lack of seating...my friends were understanding, I nearly went home! But thankfully the clouds came over and I was more comfortable ... Really cheesed off tho, it's an annual thing with friends, we're always lucky with the weather, but I felt so poorly, drives me crazy! Sometimes I think I should never have told anyone I have what I have, then they wouldn't feel sorry for me, they were lovely caring friends but I took away from their day....gutted! Got my six month review on Thursday ....they will just tell me to keep popping pills! Then a week later with the next 'so called' consultant....they don't care what I have, they just fill their time sheet with appointments! Sorry for the rant....I've had a lovely weekend but that is down to the understanding of my friends ...not the doc!!
Gentle hugs to all xx
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Gill_35
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Hi Gill 35, glad you had the opportunity to be sociable even tho' you weren't 100%. I've had so many illnesses over the last few years that it's making me doubt myself & capabilities. I feel I'm getting to know the 'new' me who has more limitations, pops about 10pills a day & puts my health 1st. Reads like you're friends are trying to be supportive & understanding. Personally I find it draining now trying to explain my aches & pains to ignorant people, I just get on & do what I need to so I stay healthy, esp as I never want to feel that pain & helpless again. I get frustrated when I compare my new self to my old hyperactive self but I'm learning to accept my new self more. Feel blessed! Be blessed! x
You're new self sounds very wise...I'm still getting to grips with the old self new self comparison but I try to be grateful there was an old self who not too unlike you was hyperactive X
It's very difficult to know how people will react when they learn you have a disease
Some take it well and then again some think it's catching and don't want to know
I am glad you got out. It's difficult enough without having to cancel days out
I don't know what you were wearing but keeping covered up is good. I tend to go way out with something funky and floaty with big hat. If you keep your chin up and walk confidently you can get away with anything. Don't stop going out you need your friends around you to find some sort of normality
It was good to get out, I looked like I was going to a funeral but no one cared I probably turned more heads because of the fact it's the sickness and fatigue which knocks me...and although my friends are amazing I can't bare the pity in their eyes when they see my discomfort...any one else probably thought I was drunk being propped up by loyal friends! Anyway I am truely grateful and very lucky...just get cheesed off from time to time X
That dizziness and sickness is horrible it just swamps you and there is nothing you can do about it. It just makes me feel as if I want to go into a corner and curl up like a baby.
I have found a walking stick seat which folds it so you can purch on it that helped me when I went to Newmarket races. There are all sorts of stick seats people carry so it doesn't feel to bad
I dont like the sun either..use to...makes me feel ill when i sit in it.....i dont tell anyone anymore. I told one friend, and she still asks me to walk in the heat and sunny days because she loves the heat. She either doesnt believe me, or just doesnt get it. Oh well. My family doesnt get it at all. I dont talk about it anymore.
Gill....i was positive for lupus 2 yrs ago, went negative after starting a digestive enzyme routine. I hate drs, so i dont go back. I just know i have a problem with my skin and the sun. This summer everytime i got out of the ocean, my shoulders were stinging like something was biting me. I realized the salt water was healing my inflamed skin even though no lesions or cuts are present. I may show negative in bloodwork, but something is going on. Thanks for asking.
I find that most of my friends are really understanding, but have a few who think that I am being precious when I say I can't sit in the sun and also have to sit down and you can see them thinking that I look perfectly well, until I go puce and sometimes throw up! And some of these are family members, so it can make life pretty hard, even when the evidence is there.
Heigh ho! That's my rant for the day, too, and I wish you a happy and cloud filled day!
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Reaction to the sun... again! 
A day of mixed emotions!
autoimmune hearing problems
Bronchoscopy- done. Well sort of!!
Sick and tired of life.
