Sticky Blood-Hughes Syndrome Support
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extra sensitive?

I went to make an appointment at the optician and the receptionist said I would get a courtesy call to remind me which I said would be useful as I need to be reminded and she laughed! (bet she wouldn't have done if I'd been 85 instead of 59) Then someone at my weekly class that I go to had a right (and uncalled for!) go at me this morning because the room was boiling hot and I asked for the air conditioning to be put on. I didn't respond because I was leaving early to go the osteopath. But I realised afterwards how much this kind of thing gets me down because I am so aware of my conditions and how some days are a struggle to get through so I am far more sensitive than I used to be. Anyone else experience this?

Sometimes I feel like hanging a sign round my neck but not sure what I'd put on it!!


10 Replies

Hello, I think things feel worse when we are extra off with this or similar conditions.. It is the indignity of being ill in the first place, and then what feels like an extra layer on top. Best ignore them and just carve what works for you, this is my own strategy, being irritated or over explaining myself just takes up too much of my precious energy - I file it in bin 13, experiences like these. Hope you feel better soon. Mary F x


Hi Caroline. I know exactly how you feel my 92 year old neighbour remembers more than I do.

Just to say when I was at work everyone said they were the same as me memory problems etc because of the menopause I knew I was different much worse than them.

I am no longer working due to memory etc. I do see that several of my friends and work colleagues and they do load of 'funny things' and if I didn't know I had Hughes I wouldn't be so worried about half the things I do wrong because they do the same.

The receptionist was probably the same too.

I hope that makes sence, I think what I am saying try and chill nobody is perfect

but it does p you off doesn't it

Love Karen


You know what, I believe in karma. You may not see it but what goes around does come around! Today I was out and needed the loo. I went to the disabled loo in the department store which had one of those new fangled press button locks which I duly pressed and the door swung open to reveal a young lady with a child in a buggy. She swung round and said rather surprisingly "oh I thought the door was locked"! Obviously not and more importantly good job it was not a few minutes later!!

I pointed out to her that it was a disabled toilet and the mother and baby toilet was next door. She agreed but said there was a long queue which she was not prepared to join. Given I was in my wheelchair I reminded her that I had no choice but she did! She slammed the door in my face which was witnessed by the janitor who was cleaning outside.

He promptly called security who were waiting for her when she emerged, as was a little crowd who had witnessed what had happened and felt it was their duty to inform her of their feelings! I did not need to say a word, just slip in and do what I came to do!! Karma, a wonderful thing!!


Unfortunately karma backfired on me two years ago when the ash cloud descended!!

My sister and her husband got the train from Edinburgh hoping to fly out from Heathrow the next day. Unfortunately flights weren't going and hotels were all booked, so who better to call than big sister not far away. But we were off on holiday to Devon so I said she couldn't come to stay. As older son pointed out London is a big place with lots of hotels and there is a train or bus from Heathrow. (didn't improve my somewhat delicate relationship with my sister!)

But unfortunately retribution came for me the following morning when we set off for Devon and hubby's car broke down halfway there and we had to be rescued back home and then go off again the next day in my ancient fiesta and missing a day's holiday.

BTW mum's with buggies can be scary!! I got accused of being a pervert when I was smiling at a couple of kids in a pram!

Feeling bit better today and hoping it lasts till the end of the week.


I like karma it can help



Hooray for you Lynn. It makes me so mad when people park in the disabled spots. It also infuriates me that people park in the vet car park near the local supermarket and I have to walk further to get to vets Aagh.

Back to your point Caroline, I get frustrated when I try to explain to people how poor my memory etc can be only for them to respond by saying 'I know exactly what you mean I'm the same.' I know they are not. The other one that gets me is the 'but you look really well' even my doctor says it. So I'm lying then am I?

Finally and even more upsetting my sister's attitude. I recently told her that I had a numb leg and that the Neurologist had said that I have 'Nerve Damage' in the brain only for her response to be 'Oh well par for the cause'. Lovely!

You should hear the fuss she is making about having a bit of high blood pressure, welcome to my world!

Enjoyed that rant hope you can all bear with me.



Hi Caroline...

I understand what you are talking about. For about 5 months or so I have been really oversensitive. Sometimes I feel I cry at the drop of a hat. I know it all gets to me too. I dont know what the answer is but I know that we just have to keep pushing on.

Take care of yourself and do something nice just for you! :)


What i find particularly frustrating is my inability to produce measurable data. I say my hip hurts but there is no meter for measuring this. I say I lost 10 pounds within 1 month and he smiles and says "you probably changed your diet." (And, no, I don't have verifiable data that I didn't.) My rheumy concludes with "your blood work is fine." He cares only about the blood work and not much about the rest of me.


I understand what you mean. The human side is sometimes lost in all of the tests and numbers. It is frustrating.


Hi all, I must say I did giggle at the toilet incident Thank you for making me smile no matter how brief it has been awhile.

Unfortunately me and my sister have a somewhat distant relationship, she asked me to phone her so I did to recieve a rant on how Unwell she had been with kidney infections....I sympathise with her as I know how painful they can be, but she went on to whingeing that it was so unfair as though the difficulties and pain I suffer daily are nothing.... She is clear of the genetic problems I have ohhh karma you make me smile although perhaps you could lay off on the kidney infections for, I know she will find something else to whine about but she won't be whingeing at me.


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