Alive, but not quite kicking – yet.

Lyall,  my ‘toy boy’ trainer asks, “What bits of your body can you move?” I have just crawled out of my car using an ungainly process of unfolding myself like a creased paper bag, transferring weight on to my rather wobbly legs, slowly raising my head and standing up. It hurts. I yelp with pain.

My whole body hurts; every joint wants a big ‘walk on’ part in this polymyalgia rheumatica production!! Starting with a stiff neck that can’t turn to ‘eavesdrop’ on conversations, frozen shoulders that complain if they have to pick up bags, painful hips that creak ominously and knees with fluid that prevents them from bending.

And there in front of me is this gorgeous young man with a big smile (and no expectations), welcoming me into his fitness studio. He’s more than ready to work with someone, old enough to remember the Beatles, who has polymyalgia rheumatica .

Lyall and I have known each other for a year. During that time I have been fit and well and steadily pursuing my ambition of retaining my health and strength for the active life that I really enjoy. Over the months, Lyall  has been alongside with his wisdom and enthusiasm, devising a personal training programme that increased my mobility, flexibility and balance (without the use of treadmills and power bikes). I loved it.

Now he’s as shocked as I am that out of the blue I have been struck down with PMR an illness that causes such immobility, pain and stiffening of my joints. Today is a bad day. I mutter something about him not having seen me so emotionally low and add, ‘I might not be able to stop myself crying’. He looks at me and simply says “I think this is what you need” and wraps me in the biggest, gentlest bear hug. This of course makes the flood-gates open and I bawl my head off. I can hear him saying “Crying’s good. Just keep breathing gently”

Wow! I needed that. Holding back on emotions in front of family, friends and colleagues is one of the things I realise I’ve been doing. It’s time to be more honest. Say it hurts. Admit I’m scared. Say I don’t want to suffer from an unexpected and nasty illness. Admit to myself that I’m afraid of being stopped in my tracks. I want to continue hill walking, playing golf, swimming, scuba diving and, at a simple level, I just want to be able to put my socks on, pick something up off the floor and get out of a chair, all of which have become increasingly difficult or impossible.

I dry my eyes and we start the session. Back to basics; I begin with hand movements. I ‘think’ about the movement of the fingers, the wrist and then the shoulder sockets where the arms rotate. I copy his swaying movements and I feel myself leaning and stretching sideways, extending my arms centimeter by centimeter. There is a lovely rhythm and movement and it doesn’t hurt.

I begin to turn my head to look along my arms. Lyall continues to encourage without any pressure whatsoever. Step by step (literally) we progress to other movements and he encourages me to begin to do simple marching. The session develops and I find myself smiling and relaxing into the movements.

After about an hour of stretching, breathing and moving I feel like I’m a new woman. There is something therapeutic and re-assuring in realising I can still control many of my movements.

I now know my brain is getting the messages through to the muscles and nerves. I know the motor functions are working. There is no physical or neurological block on the muscles and joints.

I walk out easily without discomfort to my car. I sit down and swing my legs into the driver’s seat without pain. I know that right now I may be experiencing a period of respite and the stiffness will probably return but I have a way of coping and dealing with it in future by using gentle exercise

Similarly, each morning I wake with a feeling of panic as I realise that my legs and arms appear to have lost their capacity to move. Over the last few weeks I have worked out a system that helps me to let go of this panic and free myself from the fear of being unable to move.

I begin with the smallest movement of my toes. I wriggle them and then flex my feet and ankles, gradually working up my body until I can feel movement in the different joints. Then I struggle to roll over and get out of bed, balance and stagger to the bathroom. Not the most elegant entry into the day, but I’m the only one there to observe and laugh at myself and, until I recover, it works.

My reward is a hot refreshing shower that envelops, soothes and re-assures me that I am still alive and soon I intend to be kicking.

3 Replies to “Alive, but not quite kicking – yet.”

  1. Claire, I’m engrossed in reading your blog and, I think, would be here all night if I do not now turn it off – it’s late.

    Thank you for your honesty, and for the beautiful way you have written about your PMR journey. Maybe some day, this story may help someone else who experiences the same symptoms as you.


    1. Thank you. I wrote I with the hope that this would help others who have PMR and maybe think that they are alone. It seems PMR is a disease that many people suffer from. It’s hidden and there is no ‘Test’ for it – if steroids control the symptoms you have PMR! It also appears ‘there’s a lot of it about,’ love to hear from other sufferers if this helps move on research


    2. I wrote hoping it would help others suffering from PMR. It’s a horrid disease and quite frightening when your mobility is compromised. I hope my blogs are helpful and may spark some interest from others that might be helpful for research. At present there is no test-if the steroids control the symptoms the diagnosis is ‘It’s PMR’ it also seems there’s a lot of it about so I’d love to hear other people’s experience


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