Do you ever wish your mind would just shut up and let you chill?

Hi All, trying to deal with the new diagnosis while having constant nagging worry that the lack of any sort of scan means rheumy might be missing something that will deteriorate without the right treatment. Need to see my GP to discuss revised treatment plan but can't see her for three weeks (that's only by going online and booking myself - reception offered four weeks!). So decided to find a corner of my brain to lock it all away in until the GP appointment so I could try not to appear the gibbering wreck I've appeared of late. Thought I was doing well until Wednesday when I had my second OT appointment. Instead of continuing to go through daily activities as I was supposed to I spent the first half back in gibber mode pouring my heart out too the poor little OT. Bless her, she's so sweet and lovely. She told me not to worry, that the hour was my time to spend however was best for me and that there is no limit to how many times I need to go to get everything sorted. If only the rheumy team could operate the same way! I'm sure people would get their diagnosis and treatment plan sorted much sooner and the reduction of stress would be a further bonus. Of well, when I win the lottery I shall be messaging the wonderful earthwitch to get the name of her private consultant :) On the positive side, I've been given an extremely sexy wrist splint to wear when doing painful tasks. Such a beautiful chewed toffee colour. I believe I may have hinted in the past that I am more than a weeny bit vain so it will come as no surprise to learn that my wrist will need to be in danger of falling off before anyone outside my immediate family will see me wearing it. Hope you all have a lovely relaxing weekend xxx

9 Replies

  • Poor you. I have a lovely full length sleeve in a matchining colour. Maybe we could in start up a trend for super NHS garments. Be brave keep smiling. Kind thoughts

  • I had wondered about decorating my splints with embroidery and buttons as we have done with other items as part of our artwork - but fortunately for me and for my poor hands my wrists stopped hurting after 3 or 4 months on MTX so I hardly ever need them now - long may it last. I do have some snappy black ones that I wore with my black outfit wheb singing at a Christmas concert. Great for funerals and as a way of getting out of hand shaking without looking too rude?

    Misty can't you sneak in through the back door of the GP practice where you work? 3 weeks is a long time for you to have to keep holding all your anxieties at bay for? I know I would feel very much like you about everything because I'm such a worrier - but then part of me also longs to be told this isn't RA after all and I can stop injecting myself with a chemo drug and stop forgetting to take my anti malarial Hydroxy and having to nip down to the kitchen to take one with a glass of milk each night. I hate having to fill my body with all these substances - feel like I'm self harming despite the good I know they are doing. And as I can't reconcile myself very easily to this new me I think if I were in your shoes that's what I would try (and probably fail in my case) focus on this side of things if possible. Also have you looked at the Fibro site yet? Does it or does it not feel like a place you can belong and if not why not? Trust your instincts if not and start saving up for Earthwitch's excellent private woman. Tilda xx

  • Going to see if I can get an on-the-day appointment a bit sooner but at least have the pre-booked one to fall back on if I'm not successful. Have been on the fibro site and introduced myself and replied to a couple of blogs but I guess it doesn't feel like home yet. There are some lovely people there but also, because of the nature of the beast and lack of adequate treatment options, some very desperate ones and I guess self-preservation stops me getting too involved just yet. I feel a bit selfish admitting to that. Also still not convinced my latest diagnosis gives the full picture, even though it's just a gut feeling. Mind you, I'd love someone to decide I've got neither and diagnose something that can be got rid of too x

  • Tilda, you are a gift to behold. You put into words all of my own thoughts and concerns with a little humour and common sense to-boot. Instincts are a very good thing and deffinitely cheaper than Earthwitch's excellent private woman. I am very interested to know what the "Fibro site" is. Could you give me some info ? June xx

  • Ots are such lovely people very caring and helpful which is what we all need x

  • Thank you I am an OT Asstant they call us Cota's

  • It stuff I do we'll some times and sometimes I dont

  • Try not to get stressed. The more I get stressed the worse my RA plays up . If your not happy say its hard when you are feeling low but not voicing your concerns will make you feel worse .

  • Been there as well MM, i think it is just part of the process and i have found the rheummy nurse and the ot the ones that I tend to blub on. THe poor people, if i win the lottery first I will get us both an appointment with a private consultant, you know what if i win the eruo millions i will adopt a private consultant who will treat us all.

    I hope you feel a bit better now, i am always late coming on these boards...

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