Hello and Autumnal Greetings to you!

I can’t believe how good the weather has been lately. I hope you’ve all been able to enjoy it one way or another.

This is our first newsletter since Karen began to hand over the reins in preparation for her move to Spain. Whilst we haven’t lost Karen yet, for the time being Gill, Lesley and Myself will be taking care of business. It is only now that I, personally, have begun to appreciate the huge amount of work Karen has done for this group over the years, and I think we all owe her a huge vote of thanks for all her devotion, innovation and hard work.

We’re also very fortunate that we still have Gill and Lesley to keep it all together, sustained and fortified by the sterling tea-making skills of yours truly.

It’s Chriiiiiiiiistmasaaass!

Well, not quite, but it will soon be, and we need to be thinking about our annual yuletide outing. Yes! Wrap your stick with tinsel and let joy be unconfined! A selection of menus will be available at the next meeting so be ready to make your choices as to both location and food. As always, most restaurants require a deposit so have a look down the back of the sofa and make sure you bring enough money to cover this. Typically, most places want between £5 and £10.

Winter draws on!

By which I mean the regular raffle draw and, of course, the Christmas draw. If you have any items to donate of either (or maybe both) of these events please bring them to our meetings.

“Unaccustomed as I am…”

We don’t have a speaker for this month (at least not at the time of writing), so after the mindfulness session we will have a quiz. However, if you know of someone who might like to speak at one of our meetings, or if you have something which you would like to share, then please come and have a chat with Gill, Lesley or myself.

Book Sale

Over the years we have acquired a great many books in our clinical library. This has become a bit too cumbersome to haul back and forth and so we are having a sale of some of them. So, if you’re interested, bring your hard-earned cash along to the next meeting where you will find a selection of Fibromyalgia textbooks priced at between £1 and £2. At these prices you will definitely be getting Value for Money.

Living with Fibromyalgia – a personal story

During September I read an article by Sally Perry, published on the ‘On The Wight’ website. Although we don’t see her very often, Sally is a member of our group and in her article she writes of her experiences, not only with the difficulties of getting a diagnosis, but also some of the extraordinary challenges she faced in living the Fibromyalgia life.

Sally opens her article with these words:

“It’s not something I frequently talk about – until recently only about ten people on the Island knew I live with this chronic and debilitating condition.

I’ve preferred to keep it that way – but feel that now is the right time to open up and tell my story.”

Further on, Sally spoke of the grieving process she went through, and this struck a particular chord with me:

“I found a drug regime that helps considerably in taking the edge off the pain and allows me – to those looking from the outside in – to lead a ‘normal’ life. That, and the incredible support from my husband and daughter, as well as family and friends.

However, coming to terms with losing the life you had and will never get back is like dealing with grief. There are several stages you have to go through to reach the point of acceptance. Shock, anger, guilt, denial, depression and then hope.”

I thoroughly enjoyed Sally’s article but it left me wondering how many others out there have something to say. Fibro can be very isolating and not many of us truly get the chance to share the up and downs, trials and triumphs of living with it.

We don’t all have the luxury of someone with whom we can share our deepest feelings. And I know as well as anyone that, at times, it is impossible to speak, to find words for those feelings. Our own experience, our truth, goes unheard.

At time like this, simply writing your truth down can be very helpful. It can help you organize your thoughts, understand your experiences, deal with anxieties and plan for a more hopeful future. I’ve used this with clients and it works.

So I would like to invite you to get a pen and paper, or computer, or, if you’re like me, some crayons and a sheet of old wallpaper, and write down a few lines about what your fibro is like for you. Things like:

  • How is your life different from before fibro?
  • How do you see yourself now?
  • How do you think others see you?
  • What would you say to someone who is newly diagnosed?
  • What would you say to your younger, healthier self?
  • What are your hopes for the future?
  • Basically, anything you like, as long as it’s your truth

Let me be that clear that this isn’t any kind of exam or competition. It doesn’t matter if you never show it to anyone. Make it a letter to yourself, if you like. The important thing is giving yourself a voice. So be as free and honest as you like with it.

Of course, there’s no reason you can’t share it with someone if you want to. Bring it to the group and show a friend, maybe. And if, at the next meeting, someone wants to read you theirs, take the time to listen to them. Because, small as we may be, we more than just a support group: We are a community. We all deserve to be heard.

My thanks go to Sally for letting us use her article. It’s a splendid read, so why not click here: http://wig.ht/2ltP and take a look. I’m sure you’ll enjoy it.

It’s the real thing

Coca-Cola (never one to miss an opportunity) are getting on the cannabis bandwagon. They are in talks with Canadian cannabis producer Aurora Cannabis with a view to producing cannabis-infused beverages. Of course, a hundred years ago they were flogging coke with real cocaine in it, so we shouldn’t be surprised.

Nor are they the first to go down the Cannabidiol drinks route – Molson-Coors announced the production of a cannabis enriched beer (would that be a cannabeer? Geddit? Cannabeer? Oh, never mind!) and another firm, Corona, has invested $4bn (yes, four billion dollars!) in growing cannabis for commercial uses.

What we don’t know is how much cannabidiol will be in these drinks. I suspect it will be no more than a novelty amount and, by the time you’ve drunk enough to get any benefit, you’ll have diabetes, gout, and your teeth will have dropped out.

Click here for the full BBC article: https://www.bbc.co.uk/news/business-45545233  

And finally…

Our next meeting will be on the 9th of October. Don’t forget to bring your extra money for the Christmas Meal Deposits and for all those book you want to buy. Until then, take care and go gently,