Growing Insights

For Fibromyalgia Awareness Day

Alison Clayton-Smith — Wed, 08 May 2013 09:41:00 +0000

I’ve been thinking about writing a post on fibromyalgia for a few weeks now. As there is an Awareness Day this week, now seems like a good time. This isn’t a medical post, it won’t be the whole truth, it’s a glimpse of my experience.

For me, fibromyalgia means:

pain in pretty much any part of my body at any time. This can be so bad that I want to throw myself out the window (pain at night is the worst) or it can be a minor annoyance. It can stop me from doing things, especially if it is in my right arm. Thankfully pain levels are fairly manageable these days with a combination of: co-codamol when needed; massage, shiatsu or reflexology weekly; use of the shakti mat; hot water bottles; taking it easy; TENS machine; gentle stretching; and doing activities in small doses.
exhaustion, which can vary from feeling in need of a lie down/nap after an activity (like this morning after half an hour gentle dog walking and chatting), through to complete exhaustion when even getting off the sofa to make a cup of tea feels like the hardest thing (which is how I was yesterday afternoon). At its worst, I describe it as being like I’m encased in concrete. The pain used to be the worst thing but as time has gone on, the exhaustion has become the main day-to-day foe. I have always battled on through pain (which has not been a good thing, see below) but I find it nearly impossible to battle on through exhaustion, and if I do, it gets me in the end (which is a good thing, really, honestly..)
other things like IBS (Irritable Bowel Syndrome); insomnia; sensitivity to stress, noise, lights, and anything that raises adrenaline levels like sugar or caffeine; clumsiness; forgetting things; dizziness; hot feet/burning skin; skin crawling sensations; twitchy muscles; anxiety and low moods (I can usually pinpoint the latter as a result of the exhaustion).

The consultant said he wasn’t sure if it was fibromyalgia but in the letter to my G.P. he said it was likely and to proceed on that basis, so we do. It might be that I have something else. And as people’s experience of fibromyalgia differ, it could be that it is an umbrella term for different conditions.

Causes are generally said to be some sort of emotional or physical trauma. I’ve had all sorts of both since childhood, particularly emotional trauma age 9 onwards. Things like IBS, insomnia, and constant headaches started in my teens. I suspect that was the start. But it has been at its worst since slipping down some steps on a cafe stop whilst cycling in the Italian mountains. Except that really it was the drive to keep going after that, despite the breath-taking pain, for many months, that probably tipped me into overload. A common feature of people who get fibromyalgia is apparently a perfectionist and high-achieving personality. That’s me, arising out of childhood in ways that I am only really deeply understanding now.

The 3 hardest things?

Redefining who I am and how I am. My inner critic tells me I am lazy, I am a hypochondriac, I can’t cut it in the real-world. When I feel well I think, I should be doing lots. Nope, because that just sends me into a boom and bust cycle. So, who I am now is someone who listens to her body and her intuition. Who checks out what’s needed. I can only run on the resources I have and these days those resources are more limited. That also means being unreliable, something I always hated. I’m still working on this redefinition every day. In the last fortnight I got pulled back to old patterns and I haven’t fully got over the even more exacerbated flare. At the moment it doesn’t feel like I ever will. It will pass though, if I find an appropriate level of pacing….
Limits. I used to go with the positive thinking camp, you can do whatever you want. I ended up here because what my mind wanted wasn’t good for my body. So although I still love doing and learning new things, having lots of interests, and getting out into life, I have more limits. Pacing is usually cited as one of the keys to managing fibromyalgia – looking at how to do activity in manageable chunks. I thought I was doing quite well with my pacing but this last week has shown me I still have a good way to go. So I’m increasing the limits, in the hope I can have more even energy levels. I might want to do something, I might feel driven by guilt to do something (like walk to town rather than drive), but I am finally realising that at the moment, if I listen to my body and my intuition, what I really need is to expend energy gently. It is a balancing game. Doing nothing expends little energy, but it also brings the sadness and gloom. So I need to look at each day and work out, ‘where do I need and want to use my energy today?’ and that includes factoring in, or factoring out, daily domestic stuff. I am grateful I don’t have children or live on my own, and that for the time being, I don’t need to worry about money (but I still do).
Helping other people understand the above. I look well. Everyone gets tired. So what’s the problem? (See above…)

At the moment there is no cure for the condition but it can wax and wane. It isn’t, as far as I know, life-threatening though it might contribute to other conditions that are. Some people seem to be better than me, and others far worse. There are other illnesses and conditions that I think would be much worse to have, but then when I’m exhausted or in lots of pain, it is hard to think anything could be worse.

This is my experience, or at least part of. I get frustrated, angry, afraid. I still laugh and enjoy life. I have an opportunity to redefine my life. I’ve been fortunate to start building a support network both online and in my local community. Do I feel that I ‘needed’ to end up with fibromyalgia to help me see the ‘light’? Possibly. Am I therefore glad I’ve got fibromyalgia? No, I’d rather not have it, thank you.

For more ‘considered’ views on fibromyalgia and tips on managing the condition, try:

http://www.treatcfsfm.org/

http://www.fibromyalgia-associationuk.org/

http://www.fibroaction.org/Pages/Events.aspx

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Using pictures of role models

Alison Clayton-Smith — Thu, 02 May 2013 11:03:00 +0000

Yesterday on “All in the mind” - a Radio 4 programme – they reported on a study which showed that women who could see pictures of successful female political leaders – Hillary Clinton and Angela Merkel – delivered longer and more powerful speeches. In my therapy session yesterday, I shared how I had found the Saturday Drawing Club very inspiring creatively. I was made so welcome and though I was nervous beforehand, I threw myself into the project we were set. My therapist asked what it was that enabled me to leave behind my inner critic. I think it was containment. Here was a physical space and atmosphere that encouraged exploration and experimentation. Somehow I need to re-create this feeling at home. I have a few ideas already about how to do this and the programme gave me another one…

To have pictures of female creatives around, women who could be role models. If it works with politicians, why not other disciplines. I’m thinking pictures of women who either have completely done their own thing without worrying about what other’s think or who have worked through the self-doubt and carried on being creative. What defines a successful creative woman is a whole question in itself. I think I might trust my intuition on that one.

At the moment I am not sure who to pick, as I need to know a little of their life story. If you have any thoughts, please add them in the comments. Or if you are a member of the Sustainably Creative forum, I’m going to ask for suggestions on there.

And why just women? Because the study suggested women are only influenced by female role models. Though they did only use a picture of Bill Clinton for the male role model condition……

BPS Digest summary on the study

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Podcast no. 11 – Doing the next step first

Alison Clayton-Smith — Mon, 29 Apr 2013 10:08:00 +0000

A podcast on a Monday morning, whatever next! Today I am reflecting, and acting on, ideas in a wonderful free audio interview with the poet David Whyte. I am only half way through it and I highly recommend it – I shall be listening to the rest just as soon as I have finished this. The key thing I am picking up today is the idea that to be true to ourselves we need to do the very next step first, and often that is the scariest, so we don’t do it. I realised I was about to enter this territory when I looked at my “Like to achieve list” for today (am trying not to call it a To Do List for reasons I have mentioned previously).

The interview with David is here - David Whyte: Being at the frontier of your identity

I also mention listening to Maitri Libellule’s soothing and thoughtful daily podcasts, which you can find here.

listen to ‘Doing the next step first’ on Audioboo

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Podcast no. 10 – Hara, bellies and letting go

Alison Clayton-Smith — Wed, 24 Apr 2013 15:45:00 +0000

Possibly rambling, I was quite tired…..I’m reflecting on developing a different relationship with my belly!

listen to ‘Hara, bellies and letting go’ on Audioboo

Some interesting reading on the Hara:

http://www.shiatsuman.com/the_hara.html

http://www.honoringyourbelly.com/inspiration/articles/soul-power.html

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Quick Friday greeting

Alison Clayton-Smith — Fri, 12 Apr 2013 13:17:00 +0000

I was on my course at the weekend and it has taken till today to properly recover mentally and physically. Lots I’ve been mulling over. So this is just a quick hello. The drawing above was something I felt this morning I really needed to create. Well the original idea was Bobby lying on my legs whilst I was dozing this morning. Somehow the drawing started to expand and take on a direction of its own. The blue spirals screamed to be drawn and I’m still not sure what they mean. I kept Bobby and I in soft pencil with no hard lines, to reflect the idea of harmony. And I couldn’t sit with the white paper background, it asked to be green, and pencil not oil pastel (I used both plus pen in the picture). I am intrigued by this process, something in me directing what ends up on the paper. I feel restful as a result, perhaps because there is a feeling of letting go of control (something which usually scares me!).

Have a good weekend.

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Even the most beautiful die sometime

Alison Clayton-Smith — Thu, 04 Apr 2013 11:48:00 +0000

My friend, Marigold, from the Sustainably Creative forum, sent me a lovely poem in response to the last podcast. It’s theme, about the changing of the seasons, reminded me of Cherry Blossom. Sometime last year I did a visualisation with my Ecopsychology mentor in which cherry blossom appeared, as part of an oriental landscape. The cherry blossom was on top of a mountain in full, glorious pink against a bright blue sky. Afterwards, my mentor mentioned that the samurai have an association with cherry blossom. In my research I discovered that cherry blossom represents the fragility of life. Even something at the height of its beauty dies. Through the Foundation course I have been learning to let go of things I have held on to that either seemed helpful but weren’t, as well as things that have been blatantly destructive. I knew when I embarked on the course that I needed to ‘fall apart’ in order to come back to myself.

The cherry blossom story is also a useful one for a society which places so much emphasis on looks, youth and all those things we do to project a certain image. At some point that image will have to change, so don’t hold on to it. One of the unexpected outcomes of my development on the course so far is…..hairy and sweaty armpits. Yes, really. I realised from puberty I became very ashamed of the way my body was changing, and I became particularly self-conscious of all this dark hair that was sprouting out in places other people could see – over the years I’ve spent a small fortune on laser treatment, electrolysis, waxing…. And very embarrassed about sweating because I am, for a lady, a fairly liberal sweater (not jumper). Why was I so embarrassed from the age of 10? Somewhere I must have picked up the message that this was not acceptable behaviour for a female body. Well, albeit still with the use of deodorant because even my nostrils find stale sweat unpleasant, I have decided enough is enough. Mind you, I haven’t been able to let go of plucking the dark straggly hairs on my chin but I tell myself that’s because they are due to Polycystic Ovaries. Funny, the stories I tell myself.

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I was going to include a link to a website with background information on cherry blossom in the Japanese culture. However Blogpad Pro has other ideas, so you’ll just need to go and use a friendly search engine.

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Podcast no.9 – The creative benefits of a long rest

Alison Clayton-Smith — Tue, 02 Apr 2013 11:25:00 +0000

I’m talking about the impact of taking it very easy over the long Easter weekend…..

listen to ‘The creative benefits of a long rest’ on Audioboo

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Doing the work, not dressing the window

Alison Clayton-Smith — Thu, 28 Mar 2013 15:22:00 +0000

Oh dearie, dear. I found myself repeating a well-established, and unhelpful, pattern this afternoon. I got excited yesterday about the direction, or lack of direction, my life is taking work-wise – more on that in a moment. So I had plans today to start writing out the projects I had in mind and to do some creative collaging, writing…..And what did I do? I thought ‘I need to change my website’. Ok, fine, so I definitely do need to change some of the content like the Home page, but oh no, I went straight to researching and purchasing some themes. And then spending time trying to make them do what I wanted. Guess what? I wasted time and energy. What I really need to be doing is getting on with doing the creative work that I keep saying I am going to do (and have been doing a little already) and want to do. Not making what is an already decent functional website prettier, particularly when I’m not entirely sure what I want it to look like.

I know this pattern. This is the one that says I must have the filing up-to-date before I can get started on those self-initiated projects. It never happens with client projects, when someone else is expecting something from me. Only when I am hoping for something from myself. Some of this is fear, some to do with guilt. Well this pattern is in for a shock because my new work direction is going to be all about me setting my own expectations and path. Talking about this in therapy I realised how much my life has been structured by set goals and plans, working within existing systems and towards clearly defined goals that are recognised by others, e.g. becoming a therapist. Through my course and the therapy I have now understood that I need a break from this, I need to define my own path in order to be me. And that path involves creative work. I stifled my creativity for a long time, since my mum became mentally ill when I was 11. I think I couldn’t cope with really finding out who I was, shame, guilt, fear and suppressed anger being so present. Now I need to be heard. And my intuition (which I am trusting more these days) is telling me that needs to be done through creativity, and that starts by being creative about my work path. I have decided not to continue on with the psychotherapy training next year and I feel lighter for that decision.

So the website will be changing a bit, redefining what I am up to and where I am heading. And I will absolutely be doing the work I need to do.

(The drawing above is a quick sketch I did in my Drawing Your Life book yesterday. More relaxing than reading about mid-life crises! I’ve reviewed the book here: Amazon review of Drawing Your Life.)

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Podcast no.8 – Coming out of the basement

Alison Clayton-Smith — Wed, 20 Mar 2013 18:09:00 +0000

Today’s podcast recorded after eating my lunch in the car – I always think of beetroot sandwiches and penguin biscuits at such times – is about the importance of daylight. And I make a commitment to myself.

listen to ‘Coming out of the basement!’ on Audioboo

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Moments

Alison Clayton-Smith — Mon, 18 Mar 2013 13:45:00 +0000

I have been having a very mixed few days. Mainly feeling quite blue and tired and in pain, and all that stuff. And even then there are moments of fun and clarity and creativity. Today, I seem to have managed to come back into a more positive state of mind. I have been letting go of some goals, and at the same time seeing hope for other possibilities, even though I haven’t as yet got much of a clue where those are heading. Also because I had a nice lunch yesterday with a friend I haven’t seen in a while. Although it did me in – driving to Marlow and back in torrential rain not being the most relaxing experience – we shared stuff, we laughed, we commiserated. I’d been feeling pretty lonely. I didn’t feel lonely over lunch.

I have been enjoying playing with Paper53 on the iPad….

self-portait on ipad

Bobby’s treat ball on iPad

This morning Bobby and I went for our walk with his friends we’ve made dog walking. Although talking with someone does use up more energy than just walking on my own, the benefit is one very happy and tired Bobby because he spends most of the walk sprinting around with his friend. Seeing the dogs having lots of fun always makes me laugh. And also it makes it easier on me for the rest of the day, as well as being able to do a shorter walk. And of course I get some real human interaction. We went over to the lavender fields at Cadwell. Even though the lavender plants are chopped back and are at rest, they looked beautiful under the mist.

Lavender fields resting in the mist, taken this morning near Cadwell. Almost looks like a watercolour.

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