New Diagnosis, New Me

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Bit o’ Art Therapy

W’eve all heard the cliche, new year, new me. How many people can say they’ve followed through with their ambitious resolutions? Yes, it’s mid July and I’m using the preemptive words, new year’s resolution but, for us chronic pain sufferers, we are continuously having to commit to hard core life changes, or resolutions if you will.

Take it from me, an ex- gymnast – dancer – actor – singer – cheerleader – lover of sports – and all round perfectionist, one slip up into my old life will leave me in crippling pain for the unforeseen future; it could be an hour, a day, a week… you get the idea.

My new life consists of me being an ever changing P.A.C.E-ing Warrior Clown. I need to wash the dishes, hang the washing out, and then reply to some important emails. The reality, the over-worn dirty clothes get put into the washing machine (I forget to press start) and then stare at the dishes feeling guilty as I back out of the room and pass out on the sofa for three hours because the pain, represented by a metaphorical gang of thugs to whom I owe a lot of drug money kick me into submission. Actually, most days, that would be less painful. 

Five hours later, yes five, because It took that long to transition from zombie to barely functioning human again, I go to get the washing out and realise my fibro fuck up. Washing machine on and I make a start on the dishes because the kitchen is starting to smell funky. Water sploshing everywhere, my uncoordinated sloth hands make a bosh job of cleaning and I hurry up as my neck and back begin to ache all over again. No hope for the emails, that task disappeared out of my mind 2 minutes after I decided to do it. For me, the usual feeling surrounding all of this are guilt, depression, anxiety, hopelessness and even, what’s the point? sometimes.

North Bristol Trust Hospital

The NHS’ wonderful North Bristol Hospital, my 2nd home.

Instead of hopelessly living like this everyday, pacing is the not so magical analogy rammed down our throats to manage our conditions better. Here is the NHS definition of pacing quoted from http://www.nhs.uk/Conditions/Fibromyalgia/Pages/SelfHelp.aspx:

If you have fibromyalgia, it’s important to pace yourself. This means balancing periods of activity with periods of rest, and not overdoing it or pushing yourself beyond your limits.
If you don’t pace yourself, it could slow down your progress in the long term. Over time, you can gradually increase your periods of activity, while making sure they’re balanced with periods of rest.
If you have fibromyalgia, you will probably have some days when your symptoms are better than others. Try to maintain a steady level of activity without overdoing it, but listen to your body and rest whenever you need to.
Avoid any exercise or activity that pushes you too hard, because this can make your symptoms worse. If you pace your activities at a level that’s right for you, rather than trying to do as much as possible in a short space of time, you should make steady progress.
For example, it may help to start with gentler forms of exercise – such as tai chiyoga and pilates – before attempting more strenuous aerobic or strengthening exercises.

 

That’s all well and good, but it’s not so black and white. Sometimes it’s easy to pace. For example; when you wake up knowing today will be a high pain day. You have no choice but to take it easy and plan. However, it’s near impossible on low pain days. The stubborn, hard wired primal instincts tell you to, ‘GO, GO, GO’ as you sing a happy little working song, whilst floating around like a Disney princess (some days that’s just an effect of the meds). Further into the evening, after an event filled day comes the inevitable crash and most probably a restless night due to pain or insomnia, or insomnia because of pain, (painsomnia) and the cycle begins again. Note: These are just the tip of the iceberg of my symptoms, this is only my Fibromyalgia and Hypermobility diagnosis’.

Sleeping

Crashing, cuddling and a cat!

So how the heck do we manage the unmanageable? For me, I like to research and learn as much as I can about my conditions, I will try anything and everything if it could possibly raise my quality of life. Gentle but suitable exercises, meditation as simple as breath control, even art therapies. I try to pace when I can and have tried to become more aware of  when I’m not. I take one day at a time. Most importantly, I desperately try to savour moments of happiness, and they are few and far between my periods of panic and anxiety. I mean, sitting and listening to the rain against my window, watching the clouds pass by, taking deep breaths with my eyes closed, whilst feeling the rays of the elusive British sun wash over me. Or my favourite, being held by my best friend, the love of my life, my partner in this world.

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A moment of happiness, sat by the lake facing Dower house in Stoke Park, Bristol.

Gentle hugs, I hope this has been helpful in some way to someone. I will be exploring different experiences surrounding chronic pain through different blog posts in the coming weeks, so keep your eyes peeled.

The irony is, it’s hard writing a chronic pain blog when you are in too much pain to write it.

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