I wish I knew about this, but I don't.... Day 3 #nhbpm

Woo hoo, look at me, posting 3 days in a row for @wegohealth's health blog post month. No comments on any of the articles yet though, which is strange as I can see people are visiting the site. Anyway.....

Today's prompt is: "I don't know about this, but I'd like to...." 

I don't know about biology, I was so uninterested in the subject at school, can you believe, I didn't get it's relevance to me at all! How can teaching be so bad and/or curricula so ill thought through that a reasonably bright young biological being, who was let's face it as self obsessed as the next teenage girl, could go to school every day for how ever many years it was and just not clock that biology had anything to do with me?

In the UK we get to choose what subjects we will study after age 14. Up until then you just study what they tell you and in the first two years of secondary education you do all the sciences. At least that's how it worked in my school days, a zillion light years ago. I think it's still about the same.

My Mother died when I was five, not sure if I've told you that before. That has been a major thing in my life, as you can imagine. Being without a mother growing up was tough as hell. My Dad brought me up on his own. Many traumas: he bought me terrible nylon stripey jumpers to wear and wouldn't sew my Brownie badges on my uniform because he thought cowgum glue was perfectly adequate and was completely disinterested and un-supportive of my regular lobbying to go to dancing classes or majorettes because he knew that meant that he'd then have to do tricky things with sequins and ribbons on shoes for end of year shows and he was having none of it. I got my own back by becoming a punk at the earliest opportunity. I digress, that's all another story.

The reason I mention it in this post, is that I think it's pretty weird, given that my mum had some mystery illness and died so young, that I never had the urge to find out about what makes the human body tick. It's like I had some mental block.

The main reason I refused point blank to consider studying biology is because I knew that if I did they would make me dissect a bulls eye and a dead rat. Everybody in the school knew that was what biology classes entailed. No way. It was never going to happen.

I can't believe it wasn't possible to make the subject more appealing and relevant to me and all the other kids who dropped it at the first opportunity. I feel let down now. So many of my hours and days years at school were spent bored out of my tiny mind. And now I'm so filled with curiosity and awareness of my ignorance. I wish I knew more about how my body works.

I've learned a lot about thyroid disease since my diagnosis three years ago. But there is still lots that I don't know and I learn new stuff all the time. The human body and medicine is this vast and fascinating subject. Even doctors don't know it all, far from it. And I've come to realise that my symptoms have sometimes been alleviated by things other than thyroid hormone treatments. That my condition isn't as simple as being just down to one thing with one simple cure (for a long time I hung my hopes on T3 treatment because so many thyroid patient sites are so focused on that and I kind of caught the bug, but now I realise, that for me, T3 appeared to help a bit for a while but ultimately other things have had a bigger impact on my improving health.

The doctor at the fatigue clinic showed me a fascinating diagram of how all the different systems in the body are interlinked and affect each other. I got the principle but I wish I understood the detail more. I particularly wish I understood how things like nutrients and trace elements work and I wish I could identify a magic supplement I could take that would bounce my health back to being fully functioning. Ha ha, if only it was that simple.

Maybe one day I'll know all the answers..... I'll keep looking for them anyway. I know more than I used to at least, that's a start. Learning all the time.

With smiles. Thanks for reading. Feel free to share any thoughts below.

Lorraine

Get up, get down, keep moving...

For the last few weeks I’ve been spending my Wednesday afternoons with a group of other women with chronic illnesses.  Lucky old me eh? My life is just like one big disco party...

(photo of disco ball c/o my Auntie Margaret's sheltered housing common room,

 music from the depths of my disco memory, click to play.)

I signed up to do an Expert Patient Programme course because it promised to help me learn how to manage my chronic health condition and get the most out of the medical profession.

On the whole I have to say it has been quite useful though not entirely what I expected.

The course leaders are volunteers who also have long term health problems. They are lovely ladies and extremely well prepared for every session with flipcharts and notes so they know exactly what they’re doing and it’s all very clear for everyone.

EPP trains them and in fact during our course they were assessed and have become accredited, which means that the next course they deliver they will get paid which I think is pretty good.  I’m all for patient power and turning your experience of illness into an earning opportunity seems like a positive step. It also removes that sometimes uncomfortable professional:patient relationship that us sick people can have sometimes with our doctors.

At the end of the day, we’re all people, while I recognise that experts will (hopefully!!) have more knowledge than me about my illness and I need their help, there’s also a lot of value in getting advice and support from other people who have gone through similar stuff to me and are not going to see me as somehow less than them.

(Anyone else ever felt that their doctors don’t always seem to take them entirely seriously? I find that so tedious and BAD for my self esteem!)

Great value too for the NHS – mobilising patients to help each other has got to be a sensible long term strategy for sustainable health service – no??? Come on!! On that note I’d just like to share this excellent Ted Talks video from Dave deBronkart also known as @epatientdave.

So what have I learned so far? Different things to what I expected.

We did some stuff on communications skills and I’m super keen on this stuff because communication is one of my passions and I’ve studied it as well as being employed as a professional communicator for most of my adult life. But surprise, surprise, there wasn’t anything new there for me, basic stuff I know already and I felt that it was skipped over too quickly so that if people didn’t know it already (and not everyone would) they wouldn’t necessarily “get it” in the short session we did. Still there’s more of that to come, I may yet have a communications eureka moment!  I have to try not to be so judgemental and the content we did cover was good stuff, just not new for me.

Then we have done quite a lot on exercise and I didn’t think I was going to learn anything new there. Exercise is exercise, right, we all know it’s good for us and we should do it. When we’re ill of course it’s difficult, sometimes impossible. I learned at the Fatigue Clinic that while I’m not well enough to go running or to a yoga class for an hour, I can do 5 mins of exercise every couple of days and over time will be able to build up to doing a few more minutes, then more and more till I find I am as well as I ever was....

While I can only hope that the end bit of that will turn out as promised! And if it happens I have to expect it will take a long time, I have been doing little 5 min runs and finding that I enjoy them and feel better for them – yay me!  That was one of the useful things I took away from my sessions there (more on the Fatigue Clinic another time)

In the EPP group there are people who are not fit enough to do the little runs I am managing – but they are setting different goals, like walking up a flight of stairs a couple of times a day, or doing a few gentle upper body exercises in a chair. So I have been reminded again how lucky I am not to be much more ill than I am. And I am inspired by these women’s determination and commitment to take on their situations and take the daily steps towards being as mobile and as well as they can.

The group dynamic has encouraged me to set specific exercise goals and to achieve them. We also  had a great group discussion about why exercise is so important. It affects our bone density, our blood pressure, our muscle tone, our levels of pain, our heart health, our state of mind, our stamina and breathing, so many things beyond just the wanting to be trim and strong that I was focussed on. I really “got” how important exercise is, more than I had previously fully appreciated. So that’s been quite surprising and an unexpected lesson!

I’d love to hear from anyone else who’s done an EPP course, or anything like it, or anyone who’s read the great course book which is available on Amazon for not very much money and I’m super impressed with.

What do you think of the idea of patients helping themselves and the weird power dynamic that I feel exists between people who happen to be patients and people who have chosen to be doctors? Do you agree with Dave's video?

How do you get on with exercise? Or communicating with your doctors for that matter?

I will blog more about this course another time. Thanks so much for reading, it means the world. Comments as ever are very warmly welcomed.

Hope