My Body has a Mind of its Own

This week my doctor told me I was not fit or well enough for my next Follow Grandma adventure in May  – scuba diving in the Bahamas and living on board a hundred foot yacht.

For the last two months I have been quietly dealing and struggling with what has been diagnosed as Polymyalgia Rheumatica (think stiffness that immobilises you, pain and tiredness). I stoically accepted this and continued to believe that I would be recovered for my next exciting trip in May.

My doctor’s words came as a huge blow.

Now, 48 hours later, I’ve decided to share some of my experiences. It’s already been an intriguing, if difficult, journey; I’ve met motivating and caring people who in different ways with distinctive approaches are helping me. I’ve kept a personal diary from which I‘ll file a few blogs. I hope some of it may be helpful for you or people you care about. I promise it won’t be doom and gloom – I’ll drop in a few blogs of last year’s scuba diving and Zip Lining over the Rain Forest in Costa Rica  – but right now Follow Grandma takes a new path.

My body definitely has a mind of its own…. 

January 2015

Part way through my Indian trip I realise I am waking up in the night unable to turn over and, in the mornings, I’m not able to get out of bed without a struggle. My muscles have a low-density ache and the stiff neck I’d developed in the UK, three weeks earlier  (coincidentally after 2 days on a course of antibiotics for cystitis) hasn’t improved.

Much to my daughter’s amusement I buy a neck support for use on long car journeys and continue to exercise, do simple yoga and swim. In addition I indulge in much needed daily massages. I’m still enjoying the trip despite having the stiff neck and the difficulty of getting in and out of cars and climbing stairs up to temples and monuments.

A couple of other people are also feeling stiff which is re-assuring and I put my stiffness down to the long-haul flight, car journeys over bad roads, walking less than I normally do in the UK, different beds and hard pillows.

Four weeks later I return to the UK after another long haul flight and the stiffness and pain intensify.  I think that perhaps the jet lag may be a contributory fact as well as the additional post-trip unpacking, cleaning and washing. But after a six-hour train journey back to Scotland, my body screams “Enough”

I wake up and my body is so stiff I can hardly get out of bed. My joints, shoulders, hips and knees, appear to have seized up. Moving is extremely painful and I can only manage to get down the stairs, very gingerly, one step at a time. This is not the usual me.

Mon Feb 2nd. I visit my favourite physiotherapist in Anstruther – he of Scottish Rugby and British Lions fame. After examining me, Stuart takes in a breath and says, “I think you should go to your GP and get a blood test.  This could possibly be Polymyalgia Rheumatica”. He straps my knees and shoulders supportively in very attractive pink tape, which I notice is perfectly colour co-ordinated with my socks. I leave feeling shell-shocked.

Tues Feb 3rd I visit my GP who says” This could be PMR “ If so it could be up to two years of stiffness and pain. We discuss treatment, and she arranges a blood test and hands me a sheet of information “Steroids are the normal treatment” she says. My GP knows me well but when I ask her what will happen if I don’t take the steroids she looks surprised, “I’m not sure. I’ve never had a patient who didn’t”.  I smile and reply “Well I could be your first”.

She warns me to be on the look out for severe headaches and loss of vision. Blindness affects one in ten people unless treated promptly. I leave the practice feeling pretty low. Another taste of disability and immobility is not what I want right now. Grandma loves the freedom and delights of health and strength and so I’ve been very conscientious about exercise and diet. I love my active lifestyle so facing this diagnosis is difficult. I go home and have a weep.

Time to pull myself together. I’ll wait for the blood test results and if that’s what I’ve got then I’ll face up to it and see what my options are. I begin by Googling PMR, read lots of articles (some useful, some depressing) and then decide, before I get too carried away that it’s time to stop and listen to what my body is saying!

This turns out to be a good decision. Immediately I can see there are simple things I can do to make myself more comfortable.

  1. I am so thirsty for fresh water. For days I have been drinking gallons of water; filtered, tap, bottled and herbal teas have also risen up the popularity charts. I’ve completely deserted coffee and alcohol  – quite a big change since this grandma loves a good G&T and a fine glass of wine at the end of the day. I resolve to drink at least a litre a day. (That turns out to be the easiest resolution)
  2. I need to breathe fresh air.  I feel as if toxins or pollutants have invaded my body. All I want is to fill up my lungs with pure oxygen. How extraordinary, I’ve never experienced this feeling before. I resolve to stand on the cliffs every day for 20 minutes and breathe in the bracing clean air.

Bangalore and Delhi were both incredibly polluted.  I’ve visited India many times but on this visit I was shocked by the poisonous thick fumes constantly pumped out by hundreds of thousands of cars and motor bikes stuck in traffic jams that ran from dawn to dusk. Could there be a link here?

Listening to my body is a good idea. So what else does it want?

  1. Green vegetables and salad come into my mind and I also feel hungry for celery and pineapple and ginger. I have no interest in meat, despite the freezer having some lovely cuts in it, but fresh fish also looks large

Whatever has triggered off this inflammatory attack – maybe pollutants, a virus or even the earlier antibiotics – no matter the cause, I don’t want steroids to deal with symptoms if I can find another way. I’m using the internet, researching, have read dozens of useful and not so useful articles and I’m speaking to people who in different ways help people to recover from illness and recover strength and health.  It’s tough and challenging.

But now two months on I’ve put a few different elements into the mix-some gentle swimming in the open air (heated pool!),walking barefoot on the beach, a little Tai Chi and when combined with ibuprofen and paracetamol I have a heady mix which, for me, certainly beats sitting in a chair all day.

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