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