Thursday, 31 March 2011
A few months ago I vowed to set up a support group for thyroid patients in London. When I was first ill I really wished there was somewhere I could go to connect with other people who might have some inkling of what I was experiencing. But there was nothing. I spoke to one of the telephone support contacts at the British Thyroid Foundation and she was really nice and helpful but I still felt very isolated and confused by what was going on.
I spent quite a bit of time on thyroid discussion boards and I certainly found a community there but I got fed up with it over time, some of the people on there were very forceful about their opinions around the correct treatment for my hypothyroid and as it happened their views didn’t always tally with what my doctors were telling me. So ultimately that became quite unsatisfactory. The more I learned for myself the more I came to realise that I couldn’t just accept what these self appointed amateur experts were telling me. I found myself wading through a real hotchpotch of different and sometimes opposing positions.
And I noticed that a lot of them just seemed to be total gloom merchants and scare mongers. I remember one telling me when I first logged on, that I must expect that my doctors would be unsympathetic and that I would have to fight them every step of the way. Well I’m glad to say that hasn’t been the case although I know that some people do have a very rough ride with their doctors and I have actually had one or two hiccups with mine along the way (see previous post about the crazy letter one sent me the other month for example!). On the whole, my doctors have been good and I am more inclined to value professional medical training and experience over someone who just happens to have the time to dominate an online discussion board.
I’d pick and choose what was helpful for me on those boards and some of it was but I ultimately I realised that the original advice from my doctor made a lot of sense – reading random medical opinions on the net is not advisable!
I reached the conclusion only to trust information from accredited sources. Not to say I won’t listen to anyone other my doctor, I’m always open, always interested in what people have to say. But my b*s**t detector is pretty finely tuned these days.
Once I started to feel a lot better I started this blog and I also started to put the wheels in motion to set up a support group, working with the British Thyroid Foundation whose links with the medical profession and impeccable professionalism made them the obvious choice.
I’ve been lucky enough to find some fantastic people who are now working alongside me to make this happen. We have been holding planning meetings in the wonderful Royal Festival Hall foyer since December (top tip if you need an informal meeting space for small groups in London and don’t mind being in an open plan space, it’s super central and very nice).
London BTF volunteers at our third planning meeting
Our first information event is now less than 2 weeks away, 9th April, 10am – 1pm at the Royal Free in Hampstead. We’re expecting a good turn out, there’s been lots of interest already. Eminent endocrinologist, Mark Vanderpump, is speaking, unveiling the results of the recent UK Iodine status study which he chaired. Judith Taylor, thyroid cancer survivor, BTF Trustee and editor of the BTF Newsletter is also speaking. A wonderfully generous filmmaker has offered to come and film the talks so that we can hopefully to put them up online afterwards.
We’re excited to be working towards creating a space for a mutually respectful and positive dialogue between thyroid patients and medical professionals in London, and a space where thyroid patients can connect and share their experiences as well as access good quality information.
If you want to come along please drop me a line to book a place. It would be wonderful to meet you there.
I’d also love to hear about any experiences you might have had with other support groups, of any flavour, what are the key elements for success, are there any potential pitfalls you’d advise us to look out for? I’d love to hear from you.
Thanks for reading. J
Tuesday, 15 March 2011
I had a thought provoking session at the fatigue clinic yesterday, discussing stress. Have I told you that as well as seeing an endocrinologist I am now also attending this specialist clinic for fatigue?
It’s interesting. At the moment I spend an hour there each week doing cognitive behavioural therapy, that’s looking at how I think and behave with a view to improving my fatigue levels. I am highly resistant to the potential implication that my illness could be “all in the mind” but that’s not what they’re saying, just that everything is connected and there may be some mental patterns locked in my subconscious somewhere that might be perpetuating some of my symptoms. My thyroid blood tests are all now optimised and perhaps my health issues are not just down to my thyroid.
Well I’m an open kind of a girl and up for discussing stuff....it’s good to have the chance to talk to a professional about what’s going on with me on a week to week basis.
We identified today that I am very resistant to the idea that I may be stressed.
I am fine with recognising that I have stress in my life and even that I have had very considerable stress in my life in the past. I accept that stress is normal and everyone has stress. If I am honest with myself I can even admit I’ve rather worn the stress from my childhood almost as a little badge of honour, “...look at me I had all that to deal with but haven’t I done well.”
But I know that I have quite a deep rooted emotional need to believe that everything is okay and under control in my world. It’s really difficult to accept that I am affected by stress or that I am stressed. I resist the idea of being stressed (as opposed to having stress, yet dealing with it admirably) as though it is a shameful label I don’t want anyone to put on me.
Of course there are times in my life when I know I have been stressed and I would admit that I was, but for the most part this is only the case when the stress I am under is very extreme. For example; when I was waiting for my results of my finals at university I insisted I wasn’t stressed but I developed a rash over my entire torso. The results came in, the rash disappeared same day, go figure!
For the last four weeks, for my “homework” from the clinic, I have been tracking my stress levels. I have not as yet recognised that I have been more than very slightly stressed at any time. Most of the time I believe I am not stressed because I am having a nice time, relaxing or doing fun things, which I am fortunate to be able to do because I am not working at the moment.
And yet, I have noticed that my muscles are tense most of the time and I have to accept that feeling tension in my muscles is most likely a manifestation of stress. So maybe I’m more stressed than I appreciate. ..
I would say that my life is not stressful at the moment, my life is delightful, I’m not working, I can do pretty much what I like with my days (obviously limited by my energy levels), I am not short of money (for which I feel exceptionally lucky), I am not short of social opportunities, I am loved and I know it.
However, I am in a kind of limbo land in relation to my health. I don’t have the energy to pursue many of the things I would like to do right now and I don’t know to what extent I may regain the energy levels and clarity of mind that I used to have, so I can’t really make plans for the future.
Perhaps I am more anxious about that I have admitted to myself. It doesn’t seem unreasonable to suppose this could be the case, when I stop and think about the situation I am in.
Hmmmmmmh. I’m not going to berate myself for the fact I may have been denying my true stress levels and the possible impact they may be having on my fatigue levels. Whatever I’ve been doing or thinking is neither good nor bad, right nor wrong, it’s just how things have been/how things are.
However, I believe that the more I can recognise and respond to reality, rather than my beliefs about how things ought to be, the more powerfully I am likely to be able to deal with it. And that includes the reality about my state of mind, as opposed to what I might like to tell myself about how I’m feeling.
Today I have realised that my level of stress may not just reveal itself in the thoughts I have, it can also surface in physical ways. And being someone who is mentally exceptionally “strong” it makes sense to me that if I am stressed my body might signal the fact before my mind picks up on it. So I’m going to be paying more attention to what my body may be trying to tell me in the next week.
Do you listen to your body? What does it tell you? What is your relationship with stress, do you pay attention to it and how do you know if the levels in your life are healthy or not?
I know this post is a departure from what I promised but I wanted to put these thoughts out there for discussion....as always I will be thrilled to get any comments...
Thursday, 3 March 2011
Wide awake and wondering why I can’t sleep and then it comes to me, I’m seething! I’m outraged. I’m pissed off. I’m seriously upset.
Ah. That’ll be why I was thinking earlier that I absolutely and urgently had to have some new jeans and why I’ve been trying to work out where I can get £2,500, to pay for cosmetic dentistry (when I have absolutely no money coming in at the moment so it’s a ridiculous and impossible idea, beyond frivolous and self indulgent).
It’s displacement thinking isn’t it. My brain has been trying to resist the fact that I am unhappy by distracting me with thoughts of “things” that it’s trying to convince me will make me happy. Lucky I don’t have squillions of pounds to squander, this is the same distorted thought process that ultimately leads some unhappy rich people down a path where they end up becoming totally demented and going overboard on plastic surgery (don’t worry, I like my nose!).
(If the above logic isn’t working for you check out this great blog post, on recognising our deepest needs and not trying to fulfil them through consumption. I read it earlier and it was like someone had put the lights on for me! )
I got some wonderful news earlier today. An appeal I’d set up when I was working has now ended and an ex colleague kindly emailed me the results. I was thrilled, it has been a big success and it wouldn’t have happened if it wasn’t for me. Hurrah!
So that was a revelation, realising how pleased I was. Honestly I was totally delighted. And I was quite surprised that I was so enthusiastic. I’ve been telling myself how happy I am not to be doing that job any more (which I truly am) and I’ve been hinting to myself and others that when I am finally well enough to start pursuing paid employment again that I quite like the idea of doing something completely different, maybe something more creative and “softer.” So I feel that perhaps I learned something about myself, by recognising what a serious buzz I get when something big that I’ve visualised and created comes to fruition.
Then, I couldn’t help it, I started to feel pissed off that this wonderful career of mine, as was, is now off the table, as it were. That I can’t do that kind of thing right now, that perhaps I won’t be able to again. And that people who were my peers are over taking me at a rate of noughts in terms of career progression. I feel like I’m on the hard shoulder, being left behind!
And I’m blooming well SEETHING. It’s not fair. And I know life isn’t fair and no one ever said it was and why should it be and plenty of people are worse off than me and I have lots to be thankful for and ALL OF THAT. But really I’m just cross and that’s why I can’t sleep.
I just can’t believe that there isn’t a way to get my brain working properly again. I refuse to accept that I won’t be able to think clearly and coherently in any kind of consistent fashion again, this can’t be right!!! I can’t imagine not being taken seriously in a work context ever again. How interesting, that all of this is going on at a subconscious level and it’s taken 3 hours of insomnia for it to surface and make itself clear!
One thing about brain fog is that I think when I become more aware of it, that may be a sign it is starting to clear a bit...Well you know me, I am always a looking-on-the-bright-side kind of a girl, now I’ve had my little internal rant, normal service can be resumed!
....When I finally did get to sleep last night (you don't think I'd post my insomniac thoughts in real time do you? This bit is being written in the morning), I had another one of these vivid dreams I’ve been getting for the past week or so. This time I decided to test drive a juggernaut and drove it all round the streets where I grew up in Glasgow before deciding that it was a bit tricky to handle and probably too large for my needs! So there you go – analyse that! I’m still laughing. Also I feel more energetic today but I will follow doctor’s orders and keep resting for now. Could this all be good...?
Thanks for reading. I’ve been asked to do a post about when I was first diagnosed so that’s next on my list but I just wanted to squeeze this one in. Do leave a comment if you’d like to, as long as you’re not trying to sell anything I’ll be thrilled to hear what you think of this latest post, or if it brings anything up for you.
Love and light