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

Patient Voices on Managing Symptoms, May 2013

An earlier post introduced the Patients Voices meeting we held in London on 11th May 2013. This post shares the notes from the breakout discussion group which looked at managing symptoms. 

With many thanks to Group member, Hannah Elbourne, who has kindly typed these up and who also kindly took several lovely photos of this event.

NB: These notes must not be interpreted as medical advice, they are simply things that individuals have tried and found helpful to them if you are experiencing any symptoms which cause you concern - speak to your doctor. 

BTF London volunteer, Theresa, with the Expert Patient Programme course book:
 Self  Management of Long Term Health Conditions

Managing Symptoms, Discussion Group Notes:

Everyone in the group explained a bit about who they are and why they have chosen this particular group to participate in. We went on to talk in general about coping with having a chronic illness as well as discussing our perspectives and questions we had on how to spot and manage the emotional, mental, and physical symptoms related to thyroid disease.

Everyone in the group was hypo rather than hyper, so this is what we focused on, although it was acknowledged that hyper and hypo symptoms can be quite similar and difficult to detangle - and also that symptoms can vary from person to person and may not always be down to our thyroid condition as we may also have other things wrong with us. 

There were some approaches that came up which people felt help them in general, and also techniques for coping with specific symptoms.

  

Common symptoms and things people in the group said help them:

Muscle pain/ swelling: especially lack of upper limb strength makes it difficult even doing simple exercises that use arms or puts pressure on shoulders:

•         Magnesium spray on the muscles
•         Not eating salty foods
•         Seeing an osteopath
•         Massage therapy (human contact) – one person goes for a massage and talks through it so it’s like a two in one therapy session!

 Difficulty sleeping/ insomnia: really need sleep to be able to function (more than before having thyroid issues) but find it much harder to get off to sleep, plus wake up a lot more during the night:

•         Don’t exercise too late as the body should be winding down, not up
•         Switch off computer/ electronics
•         Don’t eat too late
•         Try to be in bed early and at the same time each evening

 Immune system issues: we all seem to catch more colds and viruses and they seem worse and take a long time to recover from making life difficult:

•         Olive leaf tea
•         Echinacea drops
•         Vitamin C as it helps to strengthen the immune system
•         We discussed supplementing separately instead of all in one multivitamins and researching to find the right products
•         Flu jab – this helps one participant but made another feel very unwell
•         Avoid people with colds like the plague!

 Body temperature: not being able to regulate our temperature, either too cold or hot, and not being able to cope with being in the sun:

•         Exercise helps to regulate temps
•         Wearing layers

 Hair thinning/ falling out: this can be very upsetting for people:

•         Coconut oil to help dryness
•         Trichologist, but expensive
•         Not to get upset about changes in appearance, there is more to you

 Fatigue: both physical and mental fatigue can make us feel isolated, disconnected and depressed and stops people from being able to live their lives:

•         Learning to say no and not take too much on is difficult but important
•         75% rule – trying not to use all your energy each day, even on good days when you might want to do lots – factor in rest each day
•         Being gentle on yourself and not beating yourself up when you can’t do so much
•         Coming to terms with the changes and understanding your new boundaries

 Anxiety: as with fatigue this can make us feel isolated and inhibit our lives and affect our self-esteem.

•         Deep breathing and yoga breathing techniques
•         Gentle yoga practice and other gentle exercise such as Thai Chi and walking  
•         Meditation
•         Being around nice, genuine, caring people helps!

 The above coping techniques for fatigue and anxiety crossed over a lot and came up a lot with helping to manage thyroid symptoms and a chronic illness in general.

Nutrition is also big factor in taking control and managing ourselves but although there are some general points that seem to work for a lot of people, such as going gluten free sometimes helping with brain fog and fatigue, or vitamin D and Iron levels needing to be optimal for thyroid to function well, it is all very confusing. We touched on this briefly but there is a lot of conflicting information especially as what works for a person with underactive thyroid doesn’t necessarily work for someone with an overactive thyroid, or autoimmune thyroid, or for people who do not have a thyroid! [note from Lorraine - we are continuing to seek more information on this subject for group members and will have speakers from the University of Surrey Msc in Nutritional Medicine giving talks in November 2013]

We have all had to make life changes and have to keep adjusting. The changes in ourselves, our personalities and our constantly changing boundaries are a struggle to understand and to cope with, not only for ourselves but also for the people around us.

Support from others is a very important factor for our wellbeing but it is very difficult for others to understand how debilitating this illness can be because:

•         Symptoms can be so variable
•         It is seen as an easily treated illness
•         So many symptoms are similar to what people think they can relate to when they are actually very different i.e. thyroid fatigue is very different from just being tired, or brain fog is not the same as having a lack of focus.

It would be useful to build a template for how to explain our symptoms and the things we go through that others don’t see (‘walk in our shoes’)

We also talked about how it can be difficult to spot thyroid symptoms as they can be similar/ confused with many other things, for example problems such as fatigue, depression, and anxiety may or may not necessarily be because of the thyroid and could be an indicator for something else. So being around other people with a similar illness can really help with recognition and understanding of what is happening to us, and although each person is different there is still a lot of common ground.

I’d like to add and I think others agree that the events at the Royal Free are very emotional (in a good way!) and informative, it makes such a huge difference to be around fellow thyroid patients as it can be such an isolating illness and being able to chat with people in a supportive environment is a great relief and really helps me to feel less disconnected from people in general. Thank you!

Other things that were mentioned in breakout group:

• Heart palpitations – we did talk about this with anxiety but I think although they can be connected, palpitations are also a separate issue on their own.
• Not a cure but how to cope for now
• Variability of symptoms limits you
• Alcohol seems to disagree with us
• Blood tests don’t necessarily show how you feel

 Other things that were mentioned, but maybe in wider group

• Time of day for taking thyroid medication vis-à-vis other pills 
• Reducing carbs, esp sugar
• Keep book of successes
• Not the same person as pre-illness

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

The truth comes calling at 3am

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

Lorraine