two steps forward, one step back...

I'm starting to feel like I'm doing a little dance. Two steps forward, one step back, you know the one.

I put on my (ancient) dancing shoes and.....

I saw my new doctor on Friday. He seems very nice. What a relief.

He thinks I might be anemic again.  Blood test done, awaiting results of that, full blood panel and thyroid function test, which is due again around now.  I'm  hoping that somewhere in these test results will be some clue as to what to do next... Less thyroxine? More? Iron tablets? Something else?

Because I'm tired, so tired, again. And it feels like I've felt like this a lot of this year which is passing me by in a bit of a blur. It's now October 2013. I was diagnosed August 2009.

My old doctor said that quite often people with hypothyroidism do not find their symptoms go away after diagnosis. She apologised that I had been told I could expect to feel well once treatment is optimised, she said the sad truth is that may not happen.

Well she's in the blummin bin as far as I'm concerned.  I won't be seeing her again, not because she said that but for all the other reasons already shared in previous posts. But I can't help but wonder if perhaps she was speaking the truth there. Is there perhaps not going to be a return to "full health". Do I just have to accept that my energy levels and cognitive function will be for ever a bit under par now?  Or was her saying that, just one more sign that she is in fact an uncaring and unsympathetic GP who does not take enough care of patients with chronic health challenges and I am better off not having her as my doctor anymore, because she is clearly not going to be much use to me with an attitude like that?

I have no idea.

I got an email from one of my fellow BTF London Group volunteers today. She said "the more I know the more I realise I don't know". Her and me both.

The Scottish Thyroid Petition ladies seem to be making some progress getting the Scottish Parliament to take some notice of the plight of those thyroid patients who are not easily returned to good health.  I'm impressed with their energy and tenacity, still have not got my head round all the science they are putting forward. I find it complicated. Still I feel their efforts are helping raise awareness amongst policy makers and health professionals and I think that's a good thing.

BTF also appear to be making progress with their hypothyroid care strategy project and I must speak to the lady leading that soon, to see  how/if I can help. Their approach sounds thorough and promising.

Our next London Group event is in a couple of weeks. There's a load of stuff to do to prepare for it. We haven't yet planned any events for 2014. I'm wondering if I really want to continue after the November meeting. I value the group but there's so much involved in making it happen. I wonder if I should be shifting my focus.

I was invited to speak on a panel at an event for Doctors developing their use of information technology. I had to decline. It was the Saturday after the above event. I will likely be tired. I need to take care of me. A shame though. I'd have liked to have participated. But I can't do everything.  I have to accept that.

I've had two long calls with people this week with tricky thyroid related health challenges and while I was able to help a bit by chatting to them and sharing my experiences I felt a bit overwhelmed with the responsibility and in both cases they sounded like  they really needed specialist help from an endocrinologist which they are struggling to get on the NHS. I feel a bit like Canute in the face of the ocean. So many people who need help and support and seemingly so little structure in our healthcare system to provide it things do not go as they perhaps should at GP level.

Hey ho.

I did manage to go dancing this week, that was fun. I was invited to a lovely charity do for Children in Need, because I'm managing a fundraising partnership that will hopefully raise a lot of money for them and some other good causes next year. It was inspiring to hear about some of the work they are doing, there were lots of great acts, a lovely dinner and thanks to a coffee and two chocolate truffles at the end of the meal I had energy to dance to Billy Ocean who sounded as fresh and upbeat as ever at the end of the night! A thoroughly uplifting evening.

So I guess I'm pondering my options at the moment.  Wondering what my next steps will be on this fascinating journey I'm on.  Lots to think about, meanwhile I keep dancing.

Billy Ocean, Pudsey Bear, Children in Need, Evening with the Stars, 2013

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 9^th 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. lorrainewilliams@btf-thyroid.org

Thanks so much for reading, it’s great to be able to connect with you on here. J