My guilty secret...

If you want to think I've got OCD after you read this you can think what you like, as it happens - I don't!

However, and I'm a little shy to reveal this, since I first realised that this illness was going to take a bit of time to sort out I have been faithfully completing a symptoms chart on a daily basis so I can keep track of whether I'm getting less fatigued, more energetic, more clearer headed, etc, over time....

Sometimes when I see my doctor I take along a copy of this chart to try and give my doctor more information about what is going on with me. Usually they quite like that. Of course different doctors can respond in different ways. I had one once who didn't like it at all and was actually quite rude to me. I didn't see her again!

After I got over the worst of the brain fog my chart became a spreadsheet, but originally, when I was first very ill and truly a small sorry fuzzy little thing with hardly no braincells at all that functioned terribly well, it was a very scribbledy hand drawn affair, because that was all I could manage to assemble.

product of my slow coach little brain cells back in 2010!

It was one of the things that made me realise my head was starting to clear when I was able to concentrate well enough to put all my precious symptom data (yes I am truly that sad!) onto a spreadsheet and make it a graph. The guy I see at the fatigue clinic tells me my graph is a work of art! All I want is for it to show some answers.

But the problem with the damn thing is that it never shows a nice clear positive upward curve to recovery. It always comes out as a jagged line, I get a bit better, I do a bit more, I get a bit more tired again, it goes up and down. Slowly over the long term I'm convinced I'm better. Those around me tell me I unquestionably am. But I look at the chart and it's kiind of difficult to read.

Excdel but my jaggedy graph - is still hard to read after the initial definite drop in fatigue!

I guess so much of how I'm feeling is subjective and what I might have scored as a '6' or a '3' six months ago is maybe not the same as what I'd come up with nowadays. Still it's frustrating. I wish it was all simpler.

I've just spent an hour updating my spreadsheet for the last 8 weeks since I saw my endocrinologist last. I've got an appointment tomorrow. I say "my endocrinologist" but actually I have no idea who I'll see because so far I haven't seen the same doctor more than once at the clinic I go to! That's how the NHS works. Weird and annoying. I would like to be able to see the same doctor and for them to get to know me a bit so they can see changes for themselves and for me to understand how they like to be communicated with and for the two of us to be able to collaborate a bit on me getting better.

I don't think I'm even going to take my graph tomorrow. I don't want whoever I see to think "we've got a right one here, crazy graph lady." I'm just going to tell them the facts as I see them about how I feel a bit better but I'm still not right and listen to what they have to say and hear what my latest blood tests results are and HOPE that the appointment will be useful and that there might be some kind of positive action that can be taken towards me continuing to feel better than I do now.  Could my meds be adjusted any more? Are there any other tests it could be worth doing? Is this as good as it's going to get? Do I just have to be patient for a while longer?

OOOghhch it's a slow old process.

I'll let you know how I get on. Sigh.

Defining and redefining moments

Today I had to write a profile for myself to go on the British Thyroid Foundation website. I'd been putting it off for some reason. I realised I just didn't know what to say about myself. It's not that I find it hard to write about myself, partly it was that my brains have been a bit foggy of late, so sitting down to any task has felt like a challenge, but it was more that I just didn't know what to write.

Obviously I've written a profile for on here and that didn't feel difficult. I think somehow, because this was going on an organisation's site and it was about me in my specific capacity as co-ordinator for London activity for the charity, it felt like almost a work thing. And when I've written about myself in a work capacity before it's been very different to this. It's been all, Lorraine has 20 years experience working with top brands blah blah, specialist this, professional that, media, pound signs, business babble.

I said to someone on twitter that it was difficult because since the illness I'm unsure how to define myself. And someone else piped in that it is about REDEFINING. Ah yes. And I've got my head round the fact that I need to redefine who I am and who I'm going to be in the future. It's a work in progress. But today just felt difficult because I had to define who I am right now, in relation to what I'm doing for BTF and why.

I started by reading the other profiles of the other local co-ordinators and they were very inspiring. What a fantastic group of women, all of whom have been doing this longer than me.

This is what I wrote in the end:

"I was diagnosed with an underactive thyroid in August 2009 and soon after it was confirmed that I had thyroid antibodies, meaning the cause of my hypothyroidism is autoimmune disease – Hashimotos.

At the time I was pleased. I expected that the diagnosis and resulting medication would mean that the fatigue issues which had plagued me for years would now be resolved.  That’s what my doctor hoped too. 

However I soon felt worse, not better and I had to take time off from the job I loved, as a corporate fundraiser for a leading cancer charity. I was off for almost 4 months, my health completely collapsed. After over 20 years working in a fast paced career, I had always managed to be successful and overcome any difficulties in my path. It was a massive shock to the system to find myself so debilitated.  I couldn’t think straight, I was tearful and exhausted. It wasn’t like me at all,  I have always been dynamic and upbeat in every aspect of my life and for years I had done my best to ignore the creeping feelings of fatigue which turned out to be the early stages of thyroid disease. Frankly, when I got very ill it was frightening.

Before I’d been diagnosed I didn’t even know what a thyroid was. I set about trying to educate myself, trying to understand what was happening to me and what to do for the best to get better. I soon came to realise that I couldn’t believe everything I read, particularly on the internet. I needed a source of RELIABLE information. I also longed for somewhere I could meet other people with thyroid disease, to learn from them and for mutual support.

The British Thyroid Foundation telephone support volunteers helped me a lot and I was pleased to also discover the recommended reading list from the charity but I was astonished that there wasn’t a BTF support group in London. I vowed that as soon as I was well enough I would start one, because I think it’s so valuable to be able for thyroid patients to be able to meet and connect with each other and to be able to have talks and Q&A sessions with leading endocrinologists.

Medication adjustments and referral to an endocrinologist for specialist treatment have slowly improved my situation considerably but it has taken a long time and I am still not as well as I hope I can be. I also now attend a specialist fatigue clinic and I continue to do my best to feel as good as I can with a healthy diet, gentle exercise, meditation and a positive mental attitude.

As well as volunteering with the BTF I help run a meditation group in Camden Town, it’s free to attend and everyone is welcome so if you’re in the area, do feel free to come along to that: www.openmeditationcamden.com. I will also be starting an Expert Patient Programme course at the end of June 2011, these courses are free too and teach how to manage a chronic health condition.

My career experience, in marketing, communications and fundraising, has been useful in getting the new London group set up but I know I need to be careful not to take too much on. At the end of last year I decided to leave my job to focus on getting my health back on track.

I’m lucky to have the support of a fantastic and enthusiastic group of fellow volunteers, we call ourselves the London Team and we are keen to support further BTF activity in the capital so if you would like to get involved to support what we’re doing, or if you have ideas of your own you need some help to make happen, please get in touch!"

I've submitted it now so hopefully it's acceptable to the charity and will go live on their site soon. Have you found it challenging to redefine yourself with a chronic health condition. Have you had an experience like this where you've had to state clearly who you are and you've felt a bit lost for words! It seems like a changing sense of self is something of a common theme for some of us with thyroid disease, if the conversation on twitter is anything to go by! I'd love to hear what you think.

And do you think the profile works? What else would you want to know, or have I said too much? Let me know!

Thanks for reading, it means the world!