to be fair, ME/ CFS is a real illness and the only controversy about diagnosing it came about due to the american insurance companies refusing to pay out (it was them that introduced the term chronic fatigue syndrome, therefore demedicalising it) it does have proven issues with cell structure, and you can’t give blood in the UK if you are diagnosed with it juyst in case you can pass it on via the bloodstream. ME/ CFS can be just as disabling as MS, people have died from it. xxxx
Oh hello are you still pretending to be ill !!! this from someone i thought was a friend.
How can you do that when your soposed to be ill,i was sitting on a chair working in my raised flower bed.
Were you not useing crutches last week when im on my scooter.
yes family and well meaning friends send me the latest cure they,ve seen in the paper get the neuro to give you this it will cure you.if only that was true.
The missconsepton that we get help with the cost of dissabiliy aids i was talking about how much it was going to cost for new batteries for my scooter “dont you get them free ?i thought you get everything you need free” i just laughed and said yeah right.
Well we keep trying to get threw to people but untill you,re in this situation we cant possably make them see what they say and do can be very hurtfull
Barbara.xx
My first neuro at my 2nd appointment, we discussed that things not any better since he sent me away with anti depressants so I was asking for me help, especially as the balance problem was getting worse and I had several falls and hurt myself and it was affecting work. So I asked if there was anything else that could be looked at to try and get to the bottom of the problem, his response was “I can’t see why you feel the need to put a name to it”… arrgghhh, stupid, he fact that I needed a reason as to why I was too ill to work at the time seemed to be completely lost on him.
[quote=“FreyaE”] I only noticed this one today, and I can’t stand it: “You can’t be still tired” or “You only need 8 hours” I guess I’ve always been an excessive sleeper with fatigue but since diagnosis, now we know why. I wish I didn’t feel tired and could function on 8 hours a night, and every time someone says one of those comments, it is just rubbing it in :(. [/quote] Yes, I’d forgotten about that one too. The people that say “you can have too much sleep and it makes you feel worse”. They have no idea that when MS fatigue hits, there is no such thing as too much sleep. Tracey x
Haha,
Had that one with my Mum.
Made the mistake of admitting I’d spent a day in bed.
“What? That’s not very good for you!”
Think I’ll be the judge of that, Mum.
T.
x
My darling Dad who was only trying to help and get his head around things…
“It’s an autoimmune issue isn’t it, MS?”
“Yes, Dad”
“Like AIDS”
“Umm…”
PG x
My Mother had a very … how can it put this? … DIRECT way of expressing her views about the World and those in it.
We had terrible rows about things that she would say before I realised that I was on a hiding to nothing trying to change her mind. Not that she would remember what she had said or was ever consistent . To be honest it was like being related to a human version of the Daily Mail at times.
Sometimes what she said was very funny but other times it was hurtful in the extreme.
One of my nieces didn’t come to my wedding after being told that she “just needed to pull herself together, show a bit of backbone and stop sponging off the state” This was just after she had had to leave University after a very serious breakdown had put her into a rehab clinic as an in-patient. I was distraught becase I really wanted her to come. She was distraught because her Granny (who she adorded) had turned on her.
And when my lovely Mother in Law developed very, very bad Alzhiemers and deteriorated from an intelligent, interesting and interested woman to sad shell of herself I was explaining to her one day about how distressing it was for Dai (and me) to see her so sad and scared. Her response? “I don’t know what he is getting upset about, ALL people with Dementia are always SO happy all the time. I wish that I was”
Guess what? I never told her about my MS. (When I saw her all she noticed was the stick so I told her I had a “bad leg” and she didn’t show any further interest )
She died in February this year and everyone keeps sympathising and asking how I feel. I have to tell them “Well, I LOVED her but I didn’t actually LIKE her”
Some people are not likeable and what they say is often not worth the oxygen they waste expressing it. Don’t forget that. Spend your time concentrating on what matters - you and the people that you love and respect. Life is to short to bother about the numpties an oxygen thieves who waste you time
That reminds me of when my bosses were insistent on me having an ATOS report so they could work out what reasonable adjustments I needed for work.
They had to order a “bespoke” report with specific questions. One of them was “How long will Mrs Boblatina’s condition last? How long will she require reasonable adjustments?” They then had to ask me to comment on the questions they had asked, so I told them that, unless they they were suggesting that the appropriate reasonable adjustment for me was a 1 way ticket to Dignitas, then there was no way that such a question could be answered.
Instead of changing their wording to a variation of " are the effects of this condition permanent or likely to improve or worsen in time?" they kept them the same. This had the effect of making the neuro from ATOS lose her rag and call them for all the stupid ******* in the world. In the end, she wrote a very good report (well good for me) which suggested far more adjustments than I would have thought at that time - which ended up costing them a LOT more money to implement