Hi
Karen again, just a simple question.
How do you get your partner to fully understand what your going through.?
He is relieved its not MS and seems to think that its all ok now.
Once my blood is working better i will be ok.
I have tried to explain my symptoms my anxiety and my forgetfulness but he just dosent get it.
Taking him to the doctors with me wont work as he works away.
Sorry for the whinge.
How do you try to explain to others whats it about.
Thanks in advance.
Karen
Give him time, and try not to overload, some people will refuse to get it, however this is a good starting point: hughes-syndrome.org/about-h... and also this useful leaflet: hughes-syndrome.org/resourc...
MaryF
Thank you mary, feeling a bit down at the moment x
Hi Karen
Get him to look at the charity's website:
Also buy the two Kay Thackray books and the patient Guide from the charity's online shop and get him to read them:
hughes-syndrome.org/get-inv...
Good luck and best wishes.
Dave
Get him to google 'Spoon Theory'
Nearly all of us have had the flu – or some other serious effect of illness – at some point in our lives. Try pointing out to him that the exhaustion we all feel in the two days or so leading up to a major illness is due to the bodies immune system ramping up and grabbing all the excess body energy it can. Even though we never come down with a diagnosable major illness, like the flu, we autoimmune patients have immune systems which are constantly in a state of alert and using a lot of the body's energy. When the autoimmune disease is n a flair, we will always feel as tired as the day before the flu!
Hi Gina
I really like that one. Its a great way to put it.
Maybe he just might get that.
Thank you very much.
C heers
Karen x
My husband was in complete denial when I was diagnosed and thought it was a minor ailment.
I asked him to read the charity website and 'sticky blood explained' he changed his tune pretty swiftly.
Thank you, seems im not alone on this. X
You're not alone!
I left pages of the books mentioned above (they are great) opened at the "friends and family" section to try and shred some light. I don't even think it was noticed.
It can be very frustrating when you can appear very normal and functioning but truthfully, it's another story altogether.
It sometimes feels as though those closest have forgotten all about it which on one hand is great as it's nice to feel 'normal' but like this evening when I'm so tired and all I want to do is sleep for days and can't really explain my dizzy head much more than that, you just want a little give.
It's great to have a little rant, sorry, that's just what I've done.
Thanks kimmo, i will give that a go as well x
One thing the good Prof Khamashta said to me (husband present) was that "the good thing is you'll probably have hardly any colds but the bad thing is when you are feeling absolutely crappy you will look really well".
In my recent hospital visit a visitor to a lady in the bed opposite looked at me and "You don't look sick" and I told her I wouldn't be here if I was well!
I'm still a bit wobbly when I walk right now, but getting better each day. My husband knows when I'm a bit dopey I forget to finish sentences or use the wrong words for things, he cuts me a bit of slack or teases me about it. 
My husband is brilliant and does such a lot for me but my children guess as long as I look ok then I am.I used to look after the grandchildren but now I can't so get no visits unlessunless I invite.It doesn't matter if you give info to some people they just still think you look fine so you are. I know how it makes you so depressed and isolated.
Hi Fra
You certainly hit the nail on the head, unfortunately I dont think he will ever understand it. I have got to the point where I just do everything I can, even if im really really tired and sore, we are currently going to sell our home and he just presumes I will be able to lift furniture ect. I have really tried to explain with little steps.
I dont tell him now, how I am.
Today has been a rough day. Im very uncordinated, dizzy/ light headed and fatigued. Drs tomorrow so hopefully I can get some more answers.
Love and light sent your way too.
Karen x
Hi Karen,
I understand you have a difficult situation also privatly at the moment. Try to think of yourself for a while if it is possible.
Good luck tomorrow and we are here for you!
Kerstin
A light in the tunnel
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