[CJ83]

Hi Everyone,

I was finally diagnosed yesterday after 6 years of feeling as though I was losing my mind.

It's a strange feeling as you are not happy that you have something wrong with you but happy that you finally have answers and can now get on with managing the symptons without everyone doubting you or diagnosing random things that you know you dont have.

I have been prescribed Hydroxychloroquine however the doc has told me to read up on them thoroughly before he'll give them to me. I'm also now registered under the unit at St Thomas Hosp.

I feel so exhausted today and really shouldn't have come into work - people moaning makes me want to scream at them - you have it easy; try living one day as me then you'll have something to moan about! But am doing well keeping my cool!

I'm now going to be a regular on here and look forward to meeting the rest of you.

Claire xxx

 

[Katharine]

Hi Claire,

I think you described the feelings at getting diagnosed very well. It isn't an easy time and you have to be prepared that you will get hit by this at times when you least expect it. I think I was really only hit by it about a year after diagnosis when things went a bit belly up for a while and I had to really look at things and accept that I was actually ill. Despite all the knowledge and giving advice to others, I'm incredibly good at pretending I'm very healthy :lol:

I think everyone will say, just try and take it a day at a time. That really is the best thing to do. The times it gets hard is when we stop doing that for whatever reason.

hugs to you,
:hug:

Katharine

 

[Mrs M]

Hi Claire

Just wanted to say hello and that I hope you're doing well.
I get upset at not having answers for just little over a year let alone 6 years!!!!!!!! Well done for sticking with things and although nobody wants to be ill at least you have answers now and hopefully get your head around all that is happening.

Take care and rest if you can.

Mrs M x

 

[specialk16]

Hey Claire,

Glad that you were finally diagnosed... sorry that it was with this terrible disease, but at least you can start getting some answers.

I always say God gives these types of disease to special people like us... because we can handle it.... and you will have to take it one day at a time... most days, I don't know how I will feel when I wake up... I stopped planning to do things and my life and now just do...

Hope you are having a pain free day. Gentle Hugs!

 

[Salopsally]

Hi Claire,
I know exactly what you mean. I was mis-diagnosed and un diagnosed for about 12 years. When I got the true diagnosis I felt exactly like that. Scared of the disease I had but pleased I at least wasnt just a silly neurotic woman and really did have something definate.
Im sure you will get lots of comfort and support from this site. I dont know how I would have coped if I hadnt found it.
Hope you can now get the proper treatment.
Take care
Sal x