Never Give Up - Thyroid patients London meeting, Feb 9th 2013

So I woke up late, precisely 20 minutes after I was supposed to be on my train on the way to London for our event. And there’s only one train an hour. Yikes.  Fortunately I’d been aiming to be there very early, so I still got there before kick-off, just.

the pretty Kent countryside, seen from my train, 9th Feb 2013

My wonderful fellow volunteers had everything under control when I arrived. I am so lucky to have found such an amazing bunch of people to help run the BTF London Team. I always get a bit worried beforehand because I’m never sure how many other volunteers I’ll have but so far it has always worked out perfectly, we don’t always have the same people on the Team, as some have to reduce their involvement due to health or other commitments from time to time, which is totally fair enough, but other people always seem to come forward and lend a hand. I love the Team. They are all amazing.  I do worry though that the group is such a fragile thing, held together purely by our collective good will.

We had 76 attendees confirmed so there was quite a bit to do, setting out the literature,  putting up signs, registering everyone who arrived, manning the information table, testing the A/V set up, etc. Fortunately the Royal Free catering team were taking care of our refreshments. Doing drinks for so many people at these events would just be too much for us to handle ourselves so we bite the bullet each time and pay for catering on arrival and in the break, counting on donations to cover the cost. 

 

Professor Colin Dayan arrived just after me, as did our other patient speaker. Phewwew. We started more or less on time and the next 3 hours flew by, seeming all to go very well.

I did a talk about my own experiences of psychological symptoms and managing my psychological wellbeing with thyroid disease then our other patient speaker did the same. Our stories were very different but both had similar themes of having been very unwell, struggling with it, feeling out of control and very unnerved/frightened by the whole experience, ultimately finding that a combination of mainstream treatment (which we had both spent a lot of time being suspicious of) and mindful self management have led us back to being able to function and feel pretty well, though in both our cases it has taken quite a while.

Then Colin Dayan gave his talk which was excellent and well received, though it had a lot of graphs and data in it which were sometimes a little challenging to follow. Colin took an unexpected but very interesting approach to the subject. He basically asked us to put ourselves in his shoes and pretend we were doctors, for the duration of his presentation. Then when we had the Q&A session, he said, we could go back to being patients and he hoped a fruitful dialogue could be had, to help work out some of the conundrums around thyroid disease and psychological wellbeing.

He then set about presenting the facts as far as they are known according to current research, including that of his own team in Cardiff. He shared that research in this area is a global effort, with teams around the world looking at different aspects and sharing information over a period of years, slowly building up knowledge and seeking answers that will help thyroid patients.

It seemed that his team have a particular interest in a subgroup of patients which initially I felt I belonged – hard to treat hypothyroid patients.

As far as I understood the data that was being presented, it seemed that there is, potentially, a significant proportion of hypothyroid patients who are being treated with thyroxine yet are more likely to be depressed than either the general population or hypothyroid patients in general.  Some of the questions researchers are asking are:

• Is this coincidental or somehow linked to thyroxine treatment?
• Could combination treatment (with T3 and T4 meds) be better for these patients?
•  Is there a genetic marker that could help identify these patients and get them on optimum treatment sooner rather than later in the future?

The BTF London group were fascinated to learn about this work and so grateful that the scientific community is taking some of our issues seriously and investing time, money and effort in trying to come up with some answers that will ultimately help thyroid patients.  The applause his talk received was heartfelt.

Colin is seeking funding for more research. I don’t know how much he needs, it’s probably lots. As some of you know, in a previous life (oh, it seems so long ago now), I did some significant fundraising for cancer research. Maybe one of these days helping thyroid researchers get the funds they need to do more work in this area might be something I could do. To be honest though it seems like a daunting and not particularly appealing task. I know from my past experience just how expensive serious medical research can be. And fundraising really doesn't float my boat as much as doing other things does. Still, food for thought.

The other thing is, while I recognise the value and importance of work like this and I applaud those who do it, it seems to be just scratching the surface and I know how long it takes for medical research to deliver changes for patients. There are so many issues, beyond how much and what kind of thyroid hormone to give a patient, that affect our psychological wellbeing.

For myself, I know that treatment with Vitamin D and subsequently changing my diet have been highly significant in my recovery. Everyone is different of course, what worked for me is not necessarily going to be helpful for someone else. But so few patients are steered to consider dietary changes or even tested for Vitamin D deficiency by their healthcare professionals. And so few are offered counselling or CBT, or if they’re offered it the potential benefits may not be explained properly and it can come across as if they’re being told their illness is all in their heads which is the last thing we need to hear when we are doing the best we can to take care of ourselves and stay sane. It seems there remains a vast gap in proper medical knowledge around psychological wellbeing, gut health, vitamin D and other potential autoimmune connections.

Equally, perhaps mainly because of stretched resources and cultural issues, the experience that so many patients seem to have of not being listened to and not having their experiences properly acknowledged, never mind effectively addressed, by their doctors,  was reported by attendees yesterday as being a huge factor affecting their psychological wellbeing while ill.

As another thyroid blogger (@hypo_man) put it to me on twitter the other day: 

“being denied treatment has impacted my psychological wellbeing. Self-doubt this has caused is unforgivable”

I know the new NHS Constitution is supposedly working towards a massive culture change in healthcare delivery in this country which sounds great and I believe needs to happen, but I have many misgivings about whether that whole agenda is actually just a smokescreen for government cuts. And anyway, the issue here is not just about the paternalistic and dismissive attitude that some doctors exhibit towards some patients, thereby making their situations worse not better in some cases - it’s actually about knowledge standards and consistency of care for patients who’s lives are being impacted to a ridiculous extent, in some cases over a very prolonged period of time.

It was interesting that Colin’s research measured only depression. Brain fog, which is entirely distinct and seems to be a major concern for almost every thyroid patient I talk to, didn't appear to have been considered at all.  I had very foggy brains for at least a year, but did not score on any measure of depression, because - amazingly - I was never actually depressed. 

So I feel a little sad after yesterday. Although thrilled the event went so well and feedback was so generally positive. And although I’m incredibly grateful for Colin’s work and to him for giving up his Saturday to come and talk to us and for being such a total super star, sharing so generously and answering so many questions so thoroughly and charmingly. He really was a great guy.

It just seems medical science is a long way from being able to make a very meaningful difference for thyroid patients who struggle and we simply have to continue fumbling in the dark, doing the best that we can, trying different things, thinking positively, keeping an open mind and being patient, for the foreseeable future. At least I can happily report that, for now at least, by doing all those things I seem to have recovered a good degree of physical and mental wellbeing. I can think clearly, I have lost weight, I can exercise, I feel good overall.  I celebrate that.

At least the good doctors will acknowledge that they don’t have all the answers and are prepared to work collaboratively with their patients to try and find the best solution or combination of factors that will make the most difference for each of us.

With thanks and good wishes to those good doctors I’m referring to and very special thanks to Professor Colin Dayan for yesterday.  Let’s never give up. 

Thyroid function and psychological wellbeing – Event

Hello dear friends, today I'm sharing a press release for an event I'm organising for thyroid patients in London. Thank you so much if you can share this link to help spread the word:

The London group of the British Thyroid Foundation (BTF), a national patient charity, is organising an event for thyroid patients and people with an interest in thyroid disorders - and particularly their effect on psychological wellbeing - at the Royal Free Hospital, London on Saturday, 9^th February 2013.

Thyroid disease is very common and usually easily treated - one in 20 people in the UK have a thyroid disorder - yet it is largely a hidden disease and some cases can have a devastating impact on people’s lives. 

People with thyroid disorders often have psychological as well as physical symptoms, yet these are seldom talked about and they can be very confusing and upsetting for patients who are unlikely to be prepared for them.

The main cause is often abnormal thyroid hormone levels. Hyperthyroidism can cause anxiety, irritability and mood swings, while hypothyroidism can cause mental slowing and memory problems as well as depression. For some people symptoms can feel like the onset of dementia which can be very unnerving both for patients and those around them. 

When properly treated psychological symptoms usually clear up, but this can take quite a long time. One thyroid patient said: 

“I feared I would never work again my thinking had become so muddled but now I am back to my usual bright and productive self – it’s a huge relief!”

The speaker at this event will be Professor Colin Dayan, Director of the Institute of Experimental and Molecular Medicine at Cardiff University School of Medicine. Professor Dayan and his team have conducted extensive research into thyroid function and psychological wellbeing and are at the cutting edge of understanding this little understood medical challenge. 

Where and when

The event will take place on Saturday, 9^th February, from 10am to 1pm, in the Sir William Wells Atrium, Royal Free Hospital. For more information or to book a place, email lorrainewilliams@btf-thyroid.org. Refreshments will be provided. Donations will be welcomed, with a suggested minimum of £3 per person, to help cover the costs of the event.

The Royal Free Hospital is six minutes walk from Belsize Park underground station, 14 minutes from Hampstead underground station, and just four minutes walk from Hampstead Heath railway station. The meeting will be held in The Atrium which will be clearly signposted from the main entrance. Parking space is extremely limited in the local area so attendees are encouraged to use public transport. 

Notes for editors

The BTF London group was launched in 2011 and this will be our seventh event. We usually get around 40 attendees and feedback so far has been very enthusiastic. For more information about this event or future activities, or to access thyroid patient case studies, images and feature ideas, contact Lorraine Williams, email: lorrainewilliams@btf-thyroid.org.

Lorraine writes a popular blog about her experiences with thyroid disease and running the BTF London group www.thyroid-hope.blogspot.com 

The British Thyroid Foundation (BTF) is a national patient support charity dedicated to supporting people with thyroid disorders and helping their families and people around them to understand the condition. It has been established for 21 years and works closely with medical professionals from the British Thyroid Association and the British Association of Endocrine and Thyroid Surgeons. Website www.btf-thyroid.org 

More information on thyroid and and psychological wellbeing can be found via The British Thryoid Foundation’s excellent guide to Thyroid and Psychological Wellbeing 

"Eat yourself fitter" a surprising tale of dietary adjustment

I've mentioned a few times of late how changing my diet has seemed to make a big difference to how well I've been the last few months.

But I haven't told you the whole story have I? Well here it is.

Before we start, I'd also like to share a charming little tune you may like to listen to while you read, "Eat Yourself Fitter", by punk heroes of my youth, The Fall. Okay, the soundtrack is entirely optional and may not be to everyone's taste (pardon the pun), but here's the full unexpurgated tale of what I am almost confident enough to call my recovery....

gluten free and #healthyyum breakfast

I first heard about how going gluten free can be worthwhile for some people with thyroid problems quite early on in my illness, late 2009 when I was so unwell I was desperate for a solution and spent a lot of time online trying to make sense of all the conflicting information out there. I heard about Gluten Free (or #GF) from several different sources, many of which seemed highly unreliable and in the end I kind of wrote it off as unlikely to make a difference and not worth trying.

How I wish I hadn't done that back then.

What I read was that good health is dependent on good gut function and low thyroid hormones will impact gut health which in turn also then makes it difficult for our bodies to use (natural OR medically prescribed) thyroid hormones effectively. Some people don't get on with gluten, for a complex and not fully understood raft of reasons. They may find going gluten free makes them feel a lot better and even if you have a blood test that says you are NOT intolerant to gluten you may find that you actually ARE and that it is worth giving it a try.

But I also read that giving up gluten was really difficult and there is no proof that it is worth doing.

Bizarrely my first ever appointment with an endocrinologist included her mentioning, in passing really, that it might be worth me trying to go gluten free, but she was also willing to prescribe me T3 medicine and I was  focused on that first and foremost. How wrong I now think I was. And I wish she had made more of a big deal about the idea and actually encouraged me to give going gluten free a try.

I started taking T3 meds alongside my thyroxine (T4 meds) in July 2010. Six months later I also started taking Vitamin D supplements after a blood test showed I was deficient. Both of those things appeared to make me feel better than I had done before, but the benefit of the T3 seemed to tail off after a while, even though the dose was increased. My weight slowly continued to increase (by more than 20 pounds over the course of two years, I got quite porky) and I still felt tired and a bit vacant a lot of the time.

Subsequently, at several of the patient information events I have since held for The British Thyroid Foundation in London, we have had several endocrinologists reiterate what that first one said to me - that trialing a gluten free diet seems to help a lot of thyroid patients and is worth trying if all else seems to be failing. Why, oh why did I not heed this advice sooner? The answer is that it was never really emphasised, no-one credible ever seemed very serious about it.

Early in 2012 I got a bug. A really horrible cough that wouldn't go. It lasted for weeks. My doctor tried me on antibiotics and steroids, she gave me an asthma inhaler which I was using, at one point, more than ten times a day, she also said she thought it might be partially allergy related and gave me antihistamines and a high strength nasal spray. I had to keep going back to the doctors, I was really quite worried, nothing seemed to shift this wheezy cough.

Then a random conversation with a pharmacists assistant changed my life.*

The pharmacy operated an allergy clinic. I knew this, I hadn't been. I had had enough of people telling me they knew just what would cure all my symptoms and all I had to do was pay for the benefit of their expertise or witch doctor medicine. When you're visibly poorly this happens a lot and I've become very cynical about promises of miracle cures, especially when there's a price tag attached.  One day I'll write about my experiences of alternative  medicine and you will howl with laughter (or cry real tears) at my past gullibility.

But this girl had nothing to gain. She just worked in the shop, she wasn't on commission. She'd seen me several times over the preceding weeks, picking up different medicines for my cough and expressing frustration that it still hadn't shifted.  I mentioned to her the doctor thought there was an allergy component to the illness and she told me how the allergy clinic at the pharmacy had helped her. Basically she'd been diagnosed with a load of food intolerances by the pharmacist, after years of terrible health, and now she feels radiantly healthy and she recommended I book an appointment. £20. Cheap.

I saw the guy the next day. He said lots of people with unexplained symptoms have food intolerances, usually either to wheat or dairy. He said he recommends avoiding first one then the other potential irritant for two weeks each and after a month of noting symptoms and food intake we would probably know if I was one of those people.

Blimey, it was miraculous. In the first two weeks I ate no wheat. My cough went, my itchy eyes cleared up, I had more energy. I decided that wheat definitely wasn't good for me and I cut it out from then on. Whenever I forgot and ate a bit I would get itchy eyes and feel rotten. It was totally straightforward.

In the second two weeks I also cut out dairy. I didn't notice much difference. I don't eat a lot of dairy anyway. It seems dairy is not really an issue for  me. Everyone is different. At the end of my first wheat free month I'd lost seven pounds. Just like that.

I was delighted. As well as the symptom reduction I was thrilled about the weight loss, which continued at the same rate, slowly and comfortably, in the following weeks. A couple of months later I decided to go one step further and do a couple of weeks of a very low carb diet to see if I could shift a bit more weight. I am very vain and the weight loss was a great incentive. After another month I'd dropped another seven pounds and I realised that I'd accidentally gone gluten free.

Since then I've continued with a gluten free diet which is also pretty low in fast burning carbs. I've lost all the weight I'd gained. I look and feel MUCH better. I don't have itchy eyes or brain fog anymore.

I've read that when you have a food intolerance you can eat a little bit of what you're intolerant to once you've avoided it for 3 months or more. So once in a blue moon now I'll eat a bit of nice bread or flapjack if I'm out and it's being offered. I'm  not rigid about the low carb thing, I'll have roast potatoes with my roast dinner at the weekend, if we go out for dinner I'll have a pudding and eat whatever else turns up on my plate.

I don't eat commercial "gluten free"  food substitutes like gluten free bread or pasta because I know that they are just other kinds of fast burning carbs that I may not actually be intolerant to but will not be good for me.

I think I probably have more low level food intolerances yet to be identified, my skin is still not perfect, I still get a bit phlegmy some days. But basically I'm back to being slim and looking healthy. My digestion is pretty normal. My energy is much better. I'm a hundred times clearer headed. I'm continuing to pay attention to how I feel after I've eaten different things and I hope in time to work out what else might be affecting me adversely to a greater or lesser extent so that I can improve my health even more.  I'm trying to find an expert in the field of thyroid and nutrition to come and talk to our group.

On the whole  I am now a poster girl for going gluten free and low carb. I know it doesn't work for everyone but if you are one of those people who's thyroid blood tests appear to be "normal" yet you still feel unwell I think this is something well worth your while trying. And remember, don't fill up on artificial commercially produced high carb "gluten free" alternatives as they are likely to keep you feeling unwell. Go for natural healthy food that won't play havoc with your blood sugar.

Great sources of more information that I have found useful include the books Wheat Belly and the South Beach Diet.   

There are lots of great websites and groups for swapping healthy eating inspiration online. Since first writing this post I've now set up a #healthyum page on this blog to share some of my own invented recipes and highlight some of my favourite sources of further healthy eating related information and support. Let me know if you have other specific information sources you'd like me to add to the page.

*By the way, there's another great track by The Fall called Mr Pharmacist..... rock on.

with smiles

Lorraine

A story from the front line of providing volunteer patient phone support

As many of you know I provide volunteer phone support for thyroid patients.

It’s not something I particularly wanted to do but when I offered myself as a volunteer local co-ordinator to the British Thyroid Foundation, which I did because I was ill and needed a support group in my area and there wasn’t one so I was determined to set one up, it turned out that part of the role was to have my number listed and to take calls. It didn’t appear to be negotiable.

Anyway, I get on average one call a day, sometimes more, sometimes none, and I’d much prefer to be able to manage the time I spend on it it, so that I was only “on call” as it were, say once a month for half a day, or once a week for an hour or two, (I do a lot of other stuff for BTF, it’s all time consuming) but the charity don’t have the resources to set up such a system so instead they list phone numbers for all the different volunteers around the country and people needing help take pot luck ringing these numbers and hope they catch someone at home and able to support them. The list says if there are particular times people are most likely to be available and also what conditions they can talk about from personal experience.

I find that I appear to be providing a valuable service - I think literally everyone I’ve spoken to so far (I’m guessing 500+ individuals) seems incredibly grateful and tells me I have been helpful - and the people who ring are generally so lovely and often so distressed that it seems to be an important thing to continue with.  

Earlier today I spoke to a lovely lady on phone, she has been feeling very tired and unwell for several months, describing lots of symptoms that sound like hypothyroidism but could of course be something else. Her doctor has been monitoring her TSH for 6 months and says he expects that she will soon need thyroxine but he will not prescribe it until she has gone above a TSH reading of 6.9. He has not offered to do ANY other tests (not even T4 to see if that is low in the range, never mind B12, Vit D, calcium, iron, etc...). Her latest blood test results say that her TSH has come down rather than gone up, still around the five point something mark. She still feels rotten.  

Her doctor apparently told her nothing can be done, she's getting old, at 47, and just has to live with feeling crap!  

This is sadly not an untypical call for me. What can I advise? Some GPs may be inclined to give a trial of thyroxine with the symptoms and TSH reading described. It’s a judgement call. If they’re not going to do that - and it is not by any means necessarily the best thing to do as prescribing thyroxine when it’s not needed can cause all sorts of problems - my understanding is that they should certainly be looking for other causes of the symptoms.  I told her that.

I had in fact spoken to her previously and sent her a leaflet I have, about how to talk to doctors, as I know that sometimes you have to be smart with your communication skills to get a doctor to listen to you and be on your side and she had expressed difficulty in getting the man to listen to her before.  On this conversation we agreed that it sounded like she had tried to do everything right on the communications front. She had been clear and specific and non aggressive.

The lady reported that her doctor seems concerned about the cost of everything and unwilling to listen. She described feeling that he just wasn’t interested in her symptoms.

She said she was considering going private because her quality of life is so badly affected and she is desperate to get some treatment that will help.  I hear this a lot from people. It breaks my heart.

I said that she is entitled to a good quality of care on the NHS and shouldn't have to go private. I said I felt the doctor wasn’t following best practice if she didn’t feel she was being taken seriously. I told her it sounded totally unreasonable to me for her to be told she is “getting old” and can’t expect to feel well now she has reached the age of 47 (that’s not “old” is it??). I said that it was not reasonable in my opinion that the doctor was not conducting further investigations to get to the root of the problem. I told her that there are moves afoot in the NHS, with the reorganisation and strengthening of the NHS Constitution, to make doctors more accountable for the service they give their patients and that really it would be a good thing to give some feedback to the practice manager or the PCT as if the doctor doesn't get any feedback he may not realise the negative impact he is having, but that I understood she probably didn’t feel up to going down that route. Complaining is a very scary thing to do when you feel unwell. I know. See my earlier post on this subject.

Ultimately I told her that she is entitled to both further investigations and a second opinion and I would advise her to ask to see someone else - either another GP at that practice or through a referral to a specialist - and that if there isn’t a GP at her practice that she feels will listen to her, if I was her I would be seriously considering switching GP.  She was concerned that another GP at the same practice would likely “side with” his colleague. I hear this concern time and time again from people who ring me. I guess it depends on the individual doctors whether that will apply or not, but the fear amongst patients seems very common. 

She thanked me a lot.  She said the information I was able to share was helpful and that it was reassuring to have someone listen to her concerns. She will talk to her husband and decide what to do from there.

I felt so cross on her behalf I came off the phone and sent a tweet about it.....

 @lojinks: “just spoke to a lovely lady on phone, feeling very tired and unwell, doctor tells her she's getting old at 47 and just has to live with it!”

My next post will show how a conversation then developed on twitter, with both health professionals and patients commenting. It was very illuminating and I’m hopeful that as well as connecting with other patients online I may have made some valuable new contacts within our healthcare system, with whom it will be worth engaging further with, with a view to sharing insights and working towards positive changes for patients with chronic illnesses (not just thyroid patients)

Relevant hashtags are:

 #nhbpm (yes I’m still trying to keep up with this WEGO Health campaign, posting more in November than I usually do, though I haven’t managed every day!)

and #NHSChange (a new conversation I discovered today, check it out)

I’ve written enough for one day but have much, much more to say– will follow up soon. Tomorrow if I can manage it. 

Au revoire for now, my lovelies. If this story has struck a chord for you I’d love to hear your thoughts. 

Advice for dealing with negativity in online health communities

I'm happy to say I've not to date encountered any negative feedback on this blog. Generally I've found the online space one filled with warm support and a great sense a fun. However I've been in a couple of online health chat rooms where things have gotten very negative and once or twice I've found myself being "attacked" for something I've said....sometimes stuff like that can happen.

the prompt for Day #14 of WEGO Health's Health Blog Post Month (#nhbpm) is Give advice for dealing with negative feedback in an online health community.   

You hear a lot about how the internet is full of nasties. However, my experience is that so far it has been mostly easy to avoid them and fairly simple to deal with anything that has arisen. Am I just lucky? Of course, "Lucky" is my middle name. *winky face.*

I do have a clear intention about how I choose to navigate the online space though - and I think it mostly works. I'm happy to share: 

• Firstly, be true to yourself. Speak your truth. Say what is important to you. Be self expressed. That is your privilege and it is what people will love you for.  It is the value you can give to your online community.  

• Secondly, honour everyone else. Everyone you encounter is an extraordinary human being, they may not all behave impeccably all the time, they may sometimes express themselves in ways you find objectionable, they may react to you in ways you don't like, but be gentle with them. Everyone has a hard path, most people are doing their best. Anyone being unreasonable most likely has problems and those problems are unlikely to be about you.  When you speak your truth, always try to do it kindly and with consideration for others. 

• Thirdly, if you find yourself under attack - don't react. Don't get drawn in to other people's dramas. Protect yourself, be prepared to withdraw / detach with love / however you want to think of it. give yourself time to calm down before responding to anything anyone writes or says that upsets you. Walk away from conversations where people are being unreasonable, you are not obliged to participate. There's a lovely phrase "don't feed the trolls", it means don't engage with attention seekers who choose to try and upset you. Pity them, sure. Wish them well. Hope that they will overcome their present difficulties and stop feeling the need to abuse others. But you don't have to try and fix them and you certainly don't have to play their game by getting involved or returning their nastiness in kind. 

• Fourthly, see feedback as a gift.  Even feedback you think is unfair can be useful, sometimes it's the most useful of all, if you just give yourself time to reflect on it and decide what value there may be in it for you.  Recognise that feedback is not the truth, it's just one person's perception, but by listening and seeking to understand what people are trying to say to us, we can sometimes learn something useful about ourselves, we may learn how to communicate more effectively with difficult characters, we may realise that we have been being difficult ourselves, we can learn what kind of thing is likely to trigger others, or we may sometimes simply learn better how to protect ourselves and what places we perhaps don't want to hang out in any more.

• Finally, don't internalise negativity. Don't ever feel trapped by it. We all have choices what conversations we choose to engage in. Some people sadly find themselves in family or local community situations which may be limiting and that's really hard, but the internet is "virtually" endless *another wink* and if you find yourself stuck in an online community where negativity reigns - you can always go and find another.

Take care of yourself and take care of others as far as it feels reasonable to do. 

Stay safe out there. 

A memory I can still taste, a future yet to unfold #nhbpm #9

I remember sitting on a bus, at the back, downstairs, I was 15 or 16.  I was day dreaming about my future. It was 1983.  I had spiky hair and baggy trousers and pointy shoes. I wore my Dad's old jumper, cut down, an old man's jacket from a charity shop, lots of eyeliner and I was clutching my acid dyed, pink denim bag from Chelsea Girl that I loved. It was the days before mobile phones so I was just looking out the window. Going through town, Glasgow city centre. It was raining outside.

I think I'd just go some preliminary exam results or something. Or maybe a teacher had just said something nice about me being clever. Something had happened, I don't remember what, but it must have opened a door in my mind to the future and it suddenly looked really rosy. The thing I remember the most is the feeling I had. A feeling of excited anticipation, like the night before Christmas.  I was thinking to myself, "I'm going to do really well in all my exams, I'm going to go to university and then I'm going to get a good job and then I'm going to be really successful and then I'm going to be a freelance consultant and not have to work full time but people will come to me for advice and it's going to be great." Where on earth did I get the idea from, at 16, that I would end up a freelance consultant??  My Dad was sometimes freelance, otherwise I don't think I'd have even had the vocabulary. I liked the idea of not being tied down.

I wasn't dreaming of babies or a husband or a beautiful house. None of that entered my mind. For some reason I was dreaming about what I was going to do. And I just had this rush of certainty that I could do a lot and it was all going to go really well - and I felt incredibly happy.

Fast forward to now. Bizarrely I have indeed become a freelance consultant and I did have that glittering career, kind of, that I'd dreamed of. I did some interesting stuff at any rate, before I got ill. I guess I envisaged becoming more senior than I actually managed to do when I was employed. (Hell when I was eleven I thought I might have a shot at being prime minister one day - I had  HIGH hopes!) I do think that the illness kind of cut me off a bit in what might have been my prime. I know I was getting ill for a long time before it reached crisis point and I had to, for a short time, "give it all up". I believe now with hindsight that it was affecting me more than I realised for a long time before I was ever diagnosed and I do feel a bit aggrieved that perhaps it may have held me back a bit.

But hey ho, here I am.  As the John Lennon song goes:

"Life is what happens to you while you're busy making other plans." 

I did some of that stuff I dreamed of and somehow, where I've ended up is where I was aiming for all along, despite many unexpected predicaments, distractions and deviations that arose along the way. I always longed to live by the sea and now I do. My freelance career is very new but it is going well. My health,  having totally collapsed, seems to be slowly but fairly steadily coming back. Total bonus I have an adorable husband too, I never expected that!

Life so far has been nothing if not interesting and it continues to be so. I love that little memory. Thinking back to the naive yet supremely confident little thing that I was at that moment, makes me smile.

Who knows what the future holds now. I intend for my health to get better and better and I intend to bring more opportunities in to my life where I can express myself and make a difference for others. Ooh, my mind just went off on a tangent there, thinking of possibilities and I've got a little bit of that feeling again!

This is my latest post for WEGO Health's Health Blog Post Month #nhbpm, using prompt  #9: Tell a descriptive story about a memory

A waiting room in need of a rethink.....

I'd like to redesign a waiting room I know as follows:

Firstly, I would ensure there were enough seats for waiting patients to sit on.  It doesn't seem too much to ask really, that instead of having to stand or sit on the floor patients could sit on a seat, particularly given the sometimes lengthy waiting times between appointment slot and actual consultation with a doctor.

The last two times I visited this clinic there were not enough seats, it's such a basic thing. I sat on the floor, it felt ridiculous and it wasn't comfortable.  I felt quietly outraged on behalf of other, older, in some cases seemingly sicker patients than me who were having to stand, or slump against the walls, if their self consciousness or wonky knees would not allow them to hit the floor with me.

Secondly I would allow reputable patient groups to display posters and medically approved literature that might be of interest to people waiting.

As a representative of such a group I once asked the endocrine nurse at this clinic if they would display a poster for an information event I was organising. He said it wasn't possible as the hospital doesn't own the walls. How very strange I thought and didn't push. I didn't have the energy to squabble. But if I was redesigning things I would ensure that the walls were available to be used for informational purposes to benefit patients. I know how much I longed for information and support in the early days of my illness, I know I'm not alone.

Those are the main things. I don't want much.

I know that hospitals have to be very careful about hygiene so I would have a nice laminating machine available somewhere in the hospital for such posters to be laminated easily before being  put up.

Thirdly I might have computer terminals in the waiting room where patients could post free text feedback about their experiences of the clinic and perhaps also post questions that they would like answers to or suggestions for improvements that could be made. There are currently terminals allowing patients to fill out a questionnaire but it is all tick box A, B or C and clearly designed in order to generate sterile statistics rather than actually intended to gather meaningful comments. I would change that.

I might even make those terminals dual purpose - so that as well as giving feedback people could look up information about their conditions, browse FAQs, or - hey how about this - provide answers or other input to qualitative research projects that the lovely medics in the clinic might be involved with.

Oh my, I'm getting fanciful, stop me before I go overboard.

I'm not going to even dream of seats of different sizes and heights, etc, to accommodate different people's comfort requirements. I'm not thinking about art or entertainment options, or fancy lighting or anything like that.  Though it would be nice to have some nice pictures to look at. I'm happy to take a book and sit quietly, but there are such things as basic needs and I would like to see them being met when people are sick and have to go to an outpatient clinic.  There I've said it. I've not been to that clinic for over a year but it still makes my blood boil when I recall how it was the last two times I went.

That's today's post for WEGO Health's Health Blog Post Month, #nhbpm, sticking to the prompt - "redesign a doctor's waiting room"

I'm not sure if this blogging every day is such a good idea. I feel like this post might come across as just a bit of a negative rant.   I'm also now wondering if I ought to share it with the clinic in question as it's about them. What do you think? Thanks for reading anyway.

*waving*