2010, a year to forget?

I finished work on 23^rd December. What a joy. It’s weird to think I won’t be going back there but mainly just a huge relief not to have to deal with the pressure of it anymore. My adorable husband has been on holiday too so we’ve been relaxing together.  Lots of telly and eating and sleeping and little gentle walks most days.  

I realised that I half expected to stop feeling unwell when I didn’t have to go to work anymore.  Well  that hasn’t happened,  I’ve been pretty tired most of the time, to be fair I’ve had the traditional Christmas chest infection which won’t have been helping. I’ve also become more aware of some weird instances of brain fog.

Brain fog is a recognised symptom of hypothyroidism, it can also be a symptom of fatigue, stress, depression, dementia, all sorts of things. I have a dear friend who’s mother got Alzheimers when she was only in her 30s but that’s extremely rare. I’m thinking my fog is a combination of my thyroid issues and the Adrenal Fatigue my new doctor says I also have.  It is a little scary though, it’s hard to judge how bad it is and I have no way of knowing whether it will get worse or better. I choose to work on the assumption it will improve, meanwhile it’s just something else to deal with.

We went out for tea and cakes with some friends and when we left I picked up my coat from the back of the chair I’d been sitting on and asked who it belonged to, like I’d never seen it before in my life! I totally didn’t recognise it at all! That was embarrassing.

Then we went to visit some cousins on Boxing Day, they’d invited us and I’d forgotten the invitation, then I half remembered it and called them to find out what we’d agreed and they reminded me, so we went. Then when we arrived they were surprised we weren’t staying overnight, because that’s what we’d discussed, only I had no recollection of the conversation! That was embarrassing too.

My cousins were clearly a bit shocked at my addled brains and made a point of saying how it wasn’t like me - to not be on the ball. So then of course I got upset, I felt a bit shocked to think my brain is functioning so much more poorly than I’d realised and that other people can really tell, more embarrassment! They’re lovely so it didn’t matter. If you can’t have a little boo with family at Christmas, when can you.  My cousin said when we left that it was good that it had happened because if it hadn’t they wouldn’t have known how much this illness is affecting me and he was all hugs and loveliness.

It made me wonder how much of a nightmare I might have been being at work.  The thing is it was such a stressful environment there that everyone was always forgetting things or getting them slightly mixed up, so when I forgot stuff I just put it down to general blur of having too much to do and too much to think about and I didn’t take it that seriously.  Maybe I was much worse there than I appreciated. No way of knowing. Well now I’m out of there, time will tell how much of the whole thing might be simply stress related.  

I don’t like to think of myself as affected by stress because my whole life I’ve had lots of stress to deal with and I’ve always been very good at handling it. I am known to be good in a crisis. I’m also very loath to let myself be labelled as someone unable to handle stress, it doesn’t ring true and I much prefer to think of myself as powerful and in control.

I like to think that my strength of will is all I need to achieve whatever I want to achieve - and up until now in life that approach has served me pretty well. This whole thyroid business is thoroughly weird and can be hard to come to terms with.

I won’t forget 2010 in a hurry though. Lots has happened, it’s all been fascinating, I’ve learned a lot and 2011 beckons just around the corner, brimful of possibilities.

I’d love to hear your experiences of being forgetful and what impact forgetfulness might have had on your life.....or what key memories or lessons from 2010 you will be carrying forward into to the new year....

Thanks so much for reading, it means the world.

Hope

The group gets started and I am leaving my job...

Such a lot has happened since my last post. Where to begin...

We (yes, I now have a little team!) held the first planning meeting for the new group yesterday. It was exciting!

Our first full meeting is scheduled for 26^th March[Update: This date has now been chanaged to 9th April as the room turned out to be double booked] and we have a suitable space provisionally secured. I’m told that we might get as many as 200 people wanting to attend so we need to be organised and have somewhere that can accommodate that many people.  I feel that it is all coming together and that together we can make it happen.

But between then and now we have quite a bit to do and need to get more people involved to help, our team needs to grow, please get in touch if you’d like to get involved!

Another BTF group, based north of London in Milton Keynes are already helping us and have said they’ll come down to London on the day, which is wonderful. I’ve been up to see them twice and they have been great, providing lots of guidance and advice. They meet at the OU and it was so good to see what a difference their group is making for thyroid patients in their area, and from farther afield - I wasn’t the only person who had travelled to be there.  They have been going for more than nine years.

So, quite a lot of progress has been made and I will share more about our plans and intentions on subsequent posts.

Another major development, I have handed in my notice at work. I saw a new specialist doctor. She says that on top of my autoimmune hypothyroid I also have adrenal exhaustion. So my whole body is now conspiring against me. She talked me through this diagram (which annoyingly I don’t have a copy of so can’t share) showing the connections between the brain, the central nervous system, the immune system and the endocrine system which are all interlinked and in my case, not working very well at the moment.  

She gave me a real Paddington Bear Hard Stare and said “are you sure you don’t need a complete break?” And I said “oh no, I’m fine working three days a week at the moment and I want to get back to doing full time as soon as possible.” Then I thought about it afterwards and a few things happened at work and I decided that actually I’m fed up struggling to do a good job there and not getting a great deal of appreciation for my efforts or recognition for the good results I’m delivering. And I had a big chat with my most adorable husband and he said he’d support me if I left. So after a lot of soul searching, I resigned!

I can’t tell you how pleased I am with the decision. And my husband says I seem much perkier as a result. I finish next week, even though I was on a three month notice period my boss agreed to let me go early. I’m just tying up loose ends there so other people can pick up my work next year.

So 2011 will be a big adventure. Hopefully my health will improve and I will have more time to focus on setting up a support group for thyroid patients in London as well as some other pet projects and just relaxing. Hurrah! I can’t wait.

I’d love to hear from you if you’d like to get involved with helping set the group up, or if you might like to attend the meeting in March, or if you have any experience of running a group elsewhere and can offer any advice or insights that might help us as we get started.  

Thanks so much for reading, it means the world.

Peace and light

Hope

Setting up a group in London

For the last couple of weeks I’ve been in discussions with various people about starting up a London group for the patient advocacy charity, the British Thyroid Foundation.

When I was first diagnosed I felt utterly lost and confused and I really wanted a support group of some kind, but couldn’t find one anywhere in the city. There used to be one but it hasn’t been running for a while. There are a few groups in other parts of the country I couldn’t believe there wasn’t one in London.  Now it feels like it’s time to do something about it, it feels important and I’m delighted that already I’ve been able to connect with some other people who agree with me and have said they will help get something off the ground. Massive thanks to everyone who has offered support already, you know who you are.  If you’re reading this and would like to get involved – please get in touch!

So, what sort of group will it be? I’ve committed to the BTF that we’ll do at least 2 meetings a year with an external speaker and I’m aiming for the first one to be in March. That means I want to have an initial planning meeting with interested parties sometime in January. What I’d really like is to be able to help bring people with thyroid issues together so they can support each other and I’m hoping that these big information meetings may act as a platform for smaller groups to form. So ultimately I want to create something like a London network of people with thyroid issues.  

I’ve seen peer to peer support groups operate incredibly successfully in other arenas and I see a real opportunity for thyroid patients to be connected in this way.

The other thing I really want to achieve is to help our voices be heard by the medical profession.  Those who have chosen to make a career out of healing are often working under a lot of pressure and can sometimes lose sight of the patient perspective. I would love to be able to make a difference to how thyroid patients are perceived and treated by the medical professionals whose job it is to help them.  I think it’s so important that people’s voices are heard and that we are treated with respect and consideration and that when we’re ill we are provided with the information we need, in a way that we can comprehend, to be able to make informed choices about treatment options.

I believe that better outcomes can be achieved by patients and practitioners working in  partnership.  

Oh and it would be good to help increase awareness of thyroid disease with the wider public. I’ve been professionally involved with campaigning for breast cancer awareness for the last few years, using the iconic pink ribbon so cleverly invented by Estee Lauder. It would be amazing if the butterfly symbol for thyroid disease could start to become something that more people might recognise and understand. I wish I’d understood more about my thyroid before I was diagnosed and I wish other people had a better awareness of what my illness entails, so many just don’t “get it” at all! I guess I’m hoping that mobilising a group in London might also be one small step towards that goal as well.

So I’m starting to seek other individuals and established groups who might be able to offer practical help or share their insights. I’m looking into possible venues and potential speakers for our first meeting, I’m thinking about how to divide up all the things that will need to be done to ensure the new group can run smoothly and not take up too much time to run. I’m feeling quite excited.

This weekend I went to visit the Milton Keynes group committee who have been established for 9 years and were meeting to plan their next big information event, which takes place on 4^th December at the OU in Milton Keynes. They were a warm and inspiring bunch of women who gave me lots to think about and have offered to come down to London to help with our first meeting.

If you have any words of wisdom to offer, or would like to get involved, please get in touch...I’d love to hear from you.

Thanks so much for reading.

J

Hope

Frustration, perspective and light

Fru Fru Fru Fru FrustRATION FRUHUSTRATION....Who else remembers Soft Cell?!! What a band! Marc Almond, what a genius. I don’t know why I was so into them when I was 14, in retrospect the subversive lyrics might not have been entirely suitable for a child of such tender years, if a child of mine was listening to that stuff nowadays I might be a little concerned about it! But there you go, and I still think they wrote fantastic tunes, like I've said elsewhere, I have eclectic tastes.

When I find myself feeling frustrated, (fruhusSTRAAAAAAETiiiiiiD), with my health issues, the word in my head always prompts the tune from my teenage years to start up - and it often makes me smile, remembering the old me and the world the way it used to be, it brings up memories of being an angry, posturing teenager who thought I would conquer the world with hairspray and socialism! Oh laughing, laughing, laughing, I love that I have so many hilarious memories to look back on and laugh about! I think I’m turning into a laughing Buddha type in my old age, when I stop and think about it almost everything amuses me, especially those ‘80s looks J. The human condition is just so entertaining.

Of course I am not always laughing, far from it, I spend a lot of time contemplating my navel, regretting my limitations, resenting what I can’t do and achievements I haven’t managed to achieve. Sometimes the tears of self pity well up and I end up in floods of tears about my situation, or just  being a little bit sad and disgruntled and sorry for myself. But to be honest, whenever I get a perspective on things, I have to laugh at myself, not in a scathing way but in a fond, amused loving way. Oh little me, with my little woes, kicking and railing against the universe and wishing things were different from how they are, silly, silly, little, darling human being! Raging against reality when in fact my life is a gift and every moment on this world is this wonderful teacher and illuminator, and when I actually stop and pay attention to it I see how beautiful and perfect it all is, though it’s not what I ordered, I’ve got SO MUCH to be thankful for!    

When I realise how many other people are so much worse off than me, I am humbled by the beautiful and courageous ways they are dealing with THEIR (much greater than mine) misfortunes, well I’m just blown away.

This week for example, I discovered that a lady I met recently who I’d been very impressed with, has recently been diagnosed with lung cancer and has written about it beautifully, pragmatically and so bravely. It put my thyroid woes right into perspective.  

Then there’s my very dear friend who had cancer some years back, was told she was terminal, said goodbye to us all and was shopping for a wicker coffin and then made a miraculous recovery, who is now in the process of fulfilling her lifetime ambition and opening a deli in her neighbourhood in South East London, she is an inspiration.

And all those people in Haiti and Pakistan and other countries in the world facing challenges I can’t begin to imagine how I would deal with. My friends in Kenya who have gone through so much and yet still have so much dignity and are so brave and just get on with things and keep smiling.

Well I just think I need to get a grip really and celebrate all the good things in my life and start thinking about how I can reorganise things so that I don’t have to be a martyr to my job and stop defining myself by my career success or “failure.” Working 3 days a week is so far proving to be a lot more manageable and I am VERY thankful to be given the opportunity. BUT, I am still much more tired than I expected to be. I’m wondering if this may be something to do with the time of year. I don’t feel any more “down” so I don’t seem to fit the description of SAD that my lovely sister very kindly sent me, but I am definitely more tired again and this is exactly the time of year that my health completely crashed last year so I need to be mindful of that and careful not to let it happen again.

I don’t understand WHY the thyroid meds haven’t yet restored me to full health and vitality but I recognise that we can’t always understand everything in this life and that’s just the way it is. I will continue to try and reach that place again, keeping talking to my doctors and striving for the healthiest possible diet, supplement regime and lifestyle in general. I am going to try light therapy next (anyone got any experience of that you can share?) But I am also going to remember that this is just something that is happening, everyone’s life has difficulties, in the scheme of things, this is not such a massive cross to bear and I will do myself more favours by focussing on the positive, rather than dwelling on the negative.

Thank you so much for reading this. I'm so grateful for all the lovely comments I've had on here and elsewhere about this little blog. Let me know what you think ...about Soft Cell, fatigue, light boxes, how thyroid malfunction affects or doesn't affect your life, work life balance....any of it ...it means the world when I get some kind of response to my ramblings.

love and light

Hope

Work life balance issues while hypothyroid

For the next 2 months I will now be working three days a week instead of five, on doctors orders. The decision was made somewhat under duress, I’ve been so determined that I am “on the mend” that I think I’ve been in denial about how I well I was actually coping.

 As well as working full time again since April, in the last few weeks I’d also managed to fit in a couple of low key social events in the last few weeks which I was super happy about.  I even put myself forward to volunteer at a charity ball, running around selling “champagne raffle tickets” and auction spotting till past midnight, it was wonderful fun and we raised lots, for a very good cause!  

I’d been tired in the week and worrying whether I should pull out of the ball but didn’t want to let anyone down and figured adrenalin would see me through, which it did, hurrah! I was tired the next day but thought that was natural. I had a very relaxing weekend and had Monday morning booked off work so I felt I had planned in enough rest to get over the Friday evening.

The thing is, while I wasn’t really noticing it (or was choosing to try and overlook the fact), over the last few busy weeks my batteries had been slowly running lower and lower....I think the ball tipped me over the edge.

On the Monday morning it all kind of fell apart. Trying to get ready for work, I ended up in floods of tears, I was just so tired I couldn’t get myself together at all! I rang my boss and she told me to stay at home and see the doctor.

The doctor said it’s really common, when people have a chronic condition, that they often overdo it when they start to feel better, because they are so happy to have some energy they don’t pace themselves carefully enough.  

Bah. I just want to be well!!!   I find it terribly hard to accept this illness and the limitations it puts on me, but I have to say it is a total treat to not have to go to work every day and I intend to do my best to enjoy my days off at home.  Working has been much easier when I know I only have a few days there, I can focus and put everything into it knowing that I will be able to rest properly afterwards.

The great news is that a big piece of work I did a month ago has paid off and the organisation I work for will be getting a significant chunk of income as a result. I’m so relieved, being ill, particularly the brain fog aspect, has knocked my confidence a lot, that success has given me a massive boost.  J

Typical me, I have a big long list of things I want to do when I am not working, obviously I’ll mostly be resting but I’m also looking forward to being able to meet a few friends for coffee, get back into yoga, go swimming, blog more (smile), do more research into thyroid campaigning, meditate, maybe I’ll even have time to work out how my husband and I can move to Canada and have an easier  life (smile again), I shan’t be bored that’s for sure!

I’d love to hear how other people with health issues, particularly thyroid patients, have had to compromise to accommodate their illness. What challenges have you faced, what solutions have you come up with, what have you learned to let go of and what have you decided are the most important elements in your life to hang on to, worth letting go of other things for? If this post has resonated with you at all I'd love to hear from you.

peace and light

Hope

Thyroid Hope, my first post

I've been thinking about creating a blog about my experiences with hypothyroid for a while now. I'm active on a patient support site, www.medhelp.org and I've read a lot of different stuff from different people online and in books, in an attempt to educate myself about this frustrating illness. I'm a member of the British Thyroid Foundation, the organisation for thyroid patients in the UK which is affiliated to the British Thyroid Association, the organisation for medical professionals and I'm a patient at my local health centre (which is a fantastic practice but I’m not going to name here as I want to protect my anonymity) and UCH London.

I'm no medical expert and recognise that I'm unlikely to become one any time soon. I'm a little bit sceptical about just about everything I read. Clearly there's little consensus on treatment regimes for hypothyroid when the standard Thyroxine therapy doesn't appear to do the trick - and the good doctors that I've dealt with in the last year or so have acknowledged that. I'm shocked at the lack of solid knowledge around T3 therapy, for example.

I've been unfortunate enough to come across a couple of doctors who didn't appear to be so good, who certainly were not great communicators or did not appear to be very patient focussed. I came away from those consultations distressed, frustrated and even angry. I recognise that no-one's perfect and hard pressed doctors perhaps need to be cut a bit of slack, but I feel that poor patient care should be addressed. I feel so vulnerable with this illness and I think that's one of the things that it does to people, so I think being treated with consideration and sensitivity is terribly important. I’d like to be able to raise awareness of that with doctors.

I've had some experience with alternative therapists and for now have pulled away from going down that route though I don't rule it out for the future. I’ll say more about those experiences in a future post.

I have found myself really turned off by what I see as the negative and hysterical tone of some high profile "thryoid patient advocates."  I feel there's a real need for a calmer dialogue between thyroid patients and medical practitioners. Who knows, perhaps I'll eventually end up as frustrated and angry as some of those other voices out there. I'm going to try not to though. I'm going to try and address my illness and it’s treatment in a positive and constructive way.

I hope this blog might prove in time to be of interest to fellow patients and to doctors working with hypothyroid patients. If you're reading this it would be great to know why you are here and what you'd like to read about in future posts. I’d be so happy if we could create a dialogue here that would help even one hypothyroid patient or practitioner working in this field.  I think we patients get such a lot out of sharing our experiences and I’m pleased that the medical profession in the UK is increasingly recognising the validity of listening to patients in order to improve standards of care.

Right now I’m particularly interested in the emotional and mental effects of a malfunctioning thyroid gland, so I think that will be the subject of my next post.

Thank you so much for reading this, I hope you’ll come back and even get involved in the conversation if you’d like to.

Hope