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Date: 15.01.2012
From: Paula

Subject: Phew.

What a week. 3 am Monday was tough, i thought for a few hours I was not able to go on, but I rand the NRAS helpline and spoke to someone and they helped, and a lot of bumf came through. The trideness has been crap this week, do one thing, or a few and wipes the floor. A couple of people have freaked out over the diagnosis, so i gave them the booklet from the NRAS and told them to phone them and not ask questins of me as I have only been diagnosed and do not know what the next few months will bring or the medication or anything. I know you guys will understand it, but I don't want people freaking out around me at the mo, as I am struggling to come to terms with it myself. Yesterday with the cold I took my self off to bed in the end and kept warm that way, thank god for an electric blanket. Sorry to moan, just a hard week, struggling with tirdeness, exhaustion, pain, etc, frustration. I just want people to treat me as they did before I was diagnosed. Now it is don't do that, I'll do it, you'll hurt yourself, oh that is an old people's' disease. Oh my dog has that, etc etc.
I am also battling my mental health team at the mo as they do not beleive my diagnosis, i even offered them a copy of my x rays. Just want some of the professionals to work together and support me at the start of a unknown journey. Sorry to say all this. Just needed to put it in a place where I hope I would get some understanding. I have been crying in private on my own and putting a brave face on it for others, and supporting them with how they feel with it.
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Date: 15.01.2012
From: bsk

Subject: Re: Phew.

Hi Paula, sorry to hear you have had a bad week but good plan to give NRAS booklet. Wish I'd done that with some of my friends and family!

Re: mental health team, can you ask your rheumatologist to write to them with your diagnosis? How can they not believe it? That is terrible. You have enough to cope with never mind trying to convince people you are ill!

It took me ages to come to terms with the illness and diagnosis so be kind to yourself. Seems as if you are doing all the right things, resting etc.
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Date: 16.01.2012
From: paula

Subject: Re: Phew.

Hi bsk, the helpline told me to give the booklet to friends and family, and i did with my CPN as well, along with the medication booklets because of all the meds i am already taking i needed to know if it would react when they put me on the rhumatology ones.
The booklet and info has made my friends and family freak out over it and I could do without that at the mo. I know they are frightened abd I feel for them, abd I know it will take time for them too, but I just hate being treated differently, I have had so many problems with mental health ones with that with family and friends and I grew up with hypermobility syndrome and was really bullied and abused at school because of it and the problems i went through. I just want people to treat me as me despite whatever illness i have. Sure you would understand that. Sorry I off loaded on the forum, i didn't know who else to talk to. Thanks bsk for your reply, hope you are keeping warm in this cold weather. xx
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