Sunday, 27 February 2011

Sweet dreams are (not) made of this....

Well, get me, posting again already, keep up people!
I woke up this morning expecting to be super tired as we had a four hour BTF London Network Team meeting yesterday and I got home fit to drop. We’d planned two hours but ended up going off on a few tangents. It was a good meeting but by the end I was finding it difficult to stay focussed. Poor little tired foggy brain cells.
But no, I feel okay. I’m delighted, but now at rather a loose end as I’d expected to spend the day feeling shabby and having to rest.  The sun is shining!! I can’t believe it!! What shall I do??
I can’t go skating because all the outdoor rinks are now closed and I don’t want to be indoors.  Oh I know, I’ll photograph all my shoes so I can stick the pictures on the shoe boxes in my cupboard and be able to find whatever pair I want to wear more easily in the future – yes, really. I think I might...
Oh what joy to have the energy to be able to consider these options!
I wonder if things are finally starting to shift on the old fatigue front...I feel I’ve been a bit more active generally this week and I I have been having some very vivid dreams which might mean my brain is also getting a bit more active! (well that’s one theory, alternatively it could be descending psychosis, see below and let me know what you think...)
Last night I dreamt I went dancing with my adorable husband and it was lots of fun. If I can’t go dancing for real any more (or at least not very often) I am happy to be able to go in my sleep at least!
But earlier in the week I had such a scary nightmare I woke up squealing with fear! I don’t think I’ve done that since I was about six! Fortunately I wasn’t scared any more as soon as I woke up because the object of fear in my nightmare was so truly ridiculous, I have to share it: I dreamt that I and a friend were being terrorised by an evil occult coat hanger called “The Commander”. It was really scary, I guess you had to be there! I told someone else about this dream and she asked “so how did this coat hanger get about?”  I love that other people’s minds are equally as bonkers as mine sometimes J. The answer is that it was attached to my hand and yet seemed to have an evil energy all of it’s own!  What do you think, has my brain gone into meltdown?
See, if I was clever I’d dream about something with more commercial appeal that could be turned into a series of best-selling children’s books and I’d never have to work again.  Sadly I feel “The Commander” is not going to bring me fame or fortune any time soon.
Anyway, I’m in good spirits, if I do the photographing shoes thing I may share a link so you can all share and marvel at my collection, or advise me which ones I could actually live without and ought to go in the bin. I could probably do with some advice.
Update on the British Thyroid Foundation London Network Team, we are now six, the meeting yesterday was great. We now have two wonderful new volunteers as well as the four of us who were at the January meeting. We are all systems go for our Information Event on 9th April and have some great ideas for a follow up in September. The Team are now committed to meeting monthly to plan activities for the BTF in London. Let me know if you’d like to help out, or if you are interested in attending the main event.
Thanks so much for reading, it’s great to be able to connect with you on here. J

Friday, 18 February 2011

The one legged piroutte remains beyond me!

Well here we are, more than half way through February already. Yesterday would have been my Dad’s birthday. Instead my niece gave birth and now I have a new great nephew! Just call me G.A.L. J  My sister and her family all live in Canada so I won’t see the baby for a while but they’ve sent pictures and he’s adorable. Very exciting and nice that Dad’s birthday will be carried on in our family as a significant date.
Also yesterday I had a great meeting with someone I came across on Twitter, an ex-research scientist who now has her own production company making documentaries and short films. She has some interesting projects on the go that I was able to offer some thoughts on and she was keen to see if she can help the British Thyroid Foundation London Network by possibly filming the information meeting we’re holding on 9th April. Could be exciting! I think it would be pretty cool if we could get a video of the meeting posted online for people who can’t attend. What do you think? We’re going to try and make it happen.
We met in the Wellcome Collection cafe on Euston Road, a great venue for coffee and cake and interesting chats. They also have some fascinating, free exhibitions there. If you don’t know it, check it out next time you’re in London.
I digress. It’s been almost 2 months since I left my job and I expected to have a lot more energy by now and general reduction in symptoms. I have not been doing very much. Well I’ve done a few things....but I have absolutely been taking it easy, yet I’m still really tired a lot of the time!
I think I am still slightly in denial that I am ill! My brain keeps thinking what a wonderful thing it is not to have to go to work and wanting to go off and play, but my body, unfortunately, can’t quite match my level of enthusiasm!
I still have not been ice skating this year and very soon all the outdoor rinks in London will have closed again and I’ll have missed it. Excuse me while I just say bah, it’s so disappointing to feel so limited. I feel I’m missing quite a bit at the moment. If I get an invitation to do one thing in a day, I can’t then really do anything else. Even if I just do that one thing, the chances are I’ll end up out of breath and needing to lie down to recover. And the only thing that seems to actually help me feel better is chocolate or cake!! This is no joke!
I’m lucky, so far I haven’t been one of these people who has put on lots of weight with my thyroid problem, I’ve put on some but not masses, I’m managing not to let it get out of control. But it’s so difficult!! I’m tired, I want to eat cake, I eat cake, my brain gets all over revved with sugar, I feel more tired, I need to rest, I don’t want to rest, I want to be out there living my life!!!
So I’m a bit cheesed off about that and not sure what to make of it. Also I got a bizarre letter from my latest endocrinologist registrar, cc-d to my GP, with a typo in it that said I was so tired and forgetful that I’d stopped taking my tablets completely which of course I haven’t at all! While I appreciate mistakes can happen it’s not a good one and I don’t like the idea of that letter sitting on my medical record!
I rang up and his admin lady indicated that his hand writing wasn’t very good and that the mistake had probably crept in when his notes had been typed up. He meant to say, I’m guessing, that I have stopped WORKING completely, not as in stopped functioning but as in left my job! She kindly promised an amended letter, I haven’t seen it yet. I may need to chase. I have to say it doesn’t exactly inspire confidence in the clinic as a whole. #justsaying.
And I am still waiting for the call from the endocrine nurse for the adrenals test the endo said he wanted to run....a month ago. They honestly don’t seem to be brilliantly on the ball there. It’s a bit of a worry.
Signing off, on a lighter note, can I say a massive thank you to all of you who have been in touch with nice comments about this blog and about the 9th April meeting in Hampstead. Details are now on the BTF website. If you want to come along all you have to do is email me to book your place – we need to know numbers in advance. And if you want to help, well that would be even more fabulous, I’ll be thrilled to hear from you!
Sorry this post has turned into a bit of a rant in places. How are you doing? Let me know! It's good to share!