Living with Polymyositis
a journey to acceptance
I am 29 years old and my new husband and I are building our first yacht so we can go cruising around the world. I'm working full time, and every night I'm tucked in some corner of the hull, sanding, painting, scraping, varnishing all the small finicky jobs, in all the really tight corners. Every weekend is spent sailing and racing on a friend's 25' yacht. It's great fun, hard work and rewarding. Every spare penny we earn is sunk into the yacht. This is our dream that we've nurtured for 2 years now, and finally it looks like it's happening.

I've been having severe headaches for three weeks now and am having difficulty getting up from the mattress on the ground (our sofa!). Off to the doctor I go for traction. He's not happy with my inability to get up from the surgery floor without having to hold onto his chair. He's sending me to a specialist. The specialist gives me a pencil to hold in my fist, to grip as hard a I can. It falls out of my grip. I can't make a really tight grip. He makes me do step-ups and is concerned when I start flagging sooner than I should. He sends my blood for testing. Doesn't look good.

The blood results are inconclusive, it could be Muscular Dystrophy or Polymyositis (never heard of it) so now I have to go for an electromyogram. They stick a needle into my thigh and move it around while looking at a screen. It is excruciating! let me at least look at the screen too, so I can focus on something other than this pain.

Next is a muscle biopsy, where they just numb the arm and then, while I'm awake (yes awake) they cut off a bit of the muscle. I hear the 'grsh grsh' and feel the cut and they have NO idea how squeamish I am. I feel invaded, raped even and cannot get this feeling out of my head.

So the diagnosis is Polymyositis a degenerative muscle disease for which there is no known cure. I have 'slow onset' which means I've probably had it for a while and just didn't notice it. They have no idea what caused it. I must have complete bed-rest. Hmm I'm Aries you cannot say bed-rest to an Aries well not in my experience. And besides, I have a demanding full time job and we're sailing and building a yacht.

So I start on a regimen of drugs, needles, pricks, tests. I'm now a guinea pig patient at the hospital and go in every day on the way to work for blood tests, muscle tests, examinations and they even want me to go for counselling cause I'm not miserable enough for them. Well I choose to be happy, naively maybe, but still my life is full.

After 4 years of building, we launch our yacht, but by this time, at age 32, I have realised that sailing around the world might no longer be an option. Even racing has become difficult as I cannot move around the boat fast enough, can't pull on the sheets fast enough, and am needing help getting onto the boat. Luckily hubby is enjoying racing and might be content to forgo the trip around the world.

The drugs have bloated me I'm now a regular Michelin man, and I'm permanently ill. From being very healthy and never even having any medication in my home, my life is controlled by drugs. They have not yet halted the progress of this disease at all. I swim as much as I can, I walk the dog on the beach. Running is becoming a problem, but if I can at least still walk, I'll be okay.

We've started weaning me off some of the drugs to try to reduce my constant colds and fevers. Wow, I have so much more time in the mornings, without having to crush all the tablets, I can't swallow them whole as they get stuck in my throat. Actually swallowing is becoming a problem and I start changing my diet to what I call 'wet food'. Food that will slide down more easily.

So now we have a new project, we're building a house. It's a big double storied house on the edge of the lake, where I can swim and exercise right off the edge of my own yard. I'm 35 years old and making new dreams. I'm also doing a part time honours degree! Working full time, studying at night and building a house. Hmm where's this bed rest?

I've had to have another biopsy as my CPK levels have increased again. Now it's a drug-induced myopathy, and we need to increase the meds again. The meds have never yet helped me, I'm still getting weaker, all they do is make me ill, so why am I taking them? Because I'm too scared to stop them! But I get some help from a counsellor and we slowly wean me off the meds. I stop my hospital visits, where I've been a patient for 7 years, and no one even notices! Maybe they think I died? My optician continues to notice the steroid deposits on my contact lenses for another two years after I've stopped the medication. The weight falls off me and I stop getting ill all the time. And now I've decided to resign from my job and start my own business.

My strength continues to slowly disappear though. I can no longer leap down the stairs or climb them two at a time. Transferring between the ferry and the yacht are becoming increasingly difficult. Slowly, slowly I'm no longer invited to race, so instead I start doing the racing results from the club house, and joining the other land-bound wives waiting for their husbands. The drinking and socialising are beginning to pall and the fighting and struggling to find a new normal is increasing. I've started crying for no reason and at age 39, 10 years into this disease, I'm leaving my husband and going into hibernation. I need to find 'me' in all of this, I need to take stock of my life.

A new chapter begins. Again I'm in a double storied dwelling. Sometimes I have to crawl up the stairs and if I want to move my TV to my bedroom, I use a belt and hoist it up one step at a time, going up backwards on my bum. I start doing Tai Chi, an exercise I can manage, seeing as everything else is now too difficult. I get involved with organising a computer expo for the blind. My life slows down, becomes richer. I re-kindle my spiritual practices, which have all but disappeared. Life is good. My husband starts dating me and after a year and a half I move home again. I'm 41 years old.

New projects emerge: we build an extension to the house, move my office home, build a new pure racing yacht. This time I have no involvement in the building, just the supply of food and beverages through the workshop window. The storm clouds loom over the marriage again. I'm now unable to get out of chairs on my own, need an arm to hold on to when stepping up inclines, stairs, pavements. I am becoming more demanding by the day. It's a scary prospect, this uncertain future.

I travel to Hong Kong and China with my Tai Chi school, looking for a miraculous cure. I can still do the forms but need help in and out of the bus. I love the fact that in spite of this disease I am able to follow a new passion. After our trip, no cure in sight, my sister and I start teaching a class. Tai Chi takes up all my spare time, training three time a week, teaching class twice a week and studying in between. I have a new family of caring people around to help me through this process. I continue this fast pace, with a couple of broken feet due to loss of balance and declining strength, but a busy, busy life.

At age 46 I travel to Malaysia with my Tai Chi school to study Qigong and again hope for a miracle. I can still walk on my own, but I can't get into the swimming pool or jacuzzi, or up stairs or out of chairs on my own. My legs are becoming stiff and my fingers can no longer bend. Swallowing is becoming more of a problem and I cannot lift my head when lying flat on my back. Aside from that I'm happy and busy. Taijiquan, Traditional Chinese Medicine and Qigong fill my every spare moment. My sister and I are almost connected at the hip as we share our lives, working and playing together every day. She is my helper, my confidante, my strength.

My sister and brother-in-law are leaving! My sister and I are devastated, but they need to move closer to their children and grand-children, so I will continue the business and the classes without her. I can still just about do the forms, I sometimes have to get my students to give me an arm or help me balance. I'm 49 years old.

It's a year since my sister left and now my Sifu, my mentor, has died at age 47. I am 50 years old and the rug has been pulled out from under my life. BUT I'm going swimming with the dolphins in Mocambique, even though I now walk with a stick and haven't swum in quite a few years, as I cannot get in and out of the lake on my own.

With lots of help needed, off I go. This is the most difficult trip ever, with complete strangers who have no idea what I need or want, and me not yet knowing how to ask for the help I need. Again high-expectations of a miracle, which was not forthcoming, but I did learn to ask for help. There is nothing quite like the desperation of sitting on a toilet in an ablution block in a camp site, and waiting for someone to come along, and then trying to persuade them that you are not drunk or insane for asking them to come into the stall and pick you up off the toilet!

I went for a BodyTalk session today and am starting a course this weekend. A new cure for me? It's a simple energy medicine and really appeals to me. I can think my way to a cure for this disease.

When I broke my foot, I had to teach Tai Chi from a wheelchair, and now it's time to use that skill. I am stopping my able-bodied classes, they need to find a teacher worthy of them! And I am going to volunteer at a disabled centre and teach seated Tai Chi. Two of my students refuse to leave, and they become my private students and my helpers at the disabled centre. And so begins a new chapter of my life: BodyTalk, courses, and volunteer work.

I'm off to Findhorn in Scotland, a life-long dream of mine. My sister and I are doing a road-trip, she'll have to drive, as I can no longer drive normal low cars, only my nice high seated Renault Megane Scenic. What an amazing reconnection for us, but it does bring home to her (and me) how much I've deteriorated. We play the Transformation Game for 4 days. Another new beginning for me and an amazingly insightful experience.

Well I can no longer hide this disease. Could I ever before? I like to think so. I have finally succumbed and got myself a three-wheeler walker. I have joined a group of people who belong to the Talent Exchange, and am now out and about more often, and need to be more independent. I cannot rely on other people's arms (what I call organic walkers). Most of the people I meet these days have not seen the other 'me', the strong, physically able me, and it is so much easier not having to pretend that I am something that I no longer am.

So with a slowly deteriorating body, I now become more and more involved in my various different families: BodyTalk, Talent Exchange, Tai Chi groups. Life outside of my home is very good. Life inside of my home is not so great, and my hubby decides to go back to England to look for work. I am left, physically weak and alone in this huge house. I surround myself with helpers, create a strong support group around myself and I thrive. On visits to England we get on well, but I now can no longer do the long walks and we arrange all sorts of extra equipment for when I'm there, like commodes, walkers, wheelchairs. When I'm at home I feel emotionally strong and independent, when I'm away from home I feel totally dependent on others and I hate it.

After 26 years of marriage, at age 55, my husband and I finally agree to divorce, and so yet another chapter in my life begins. Now I start dreaming a new dream, of building a Symbiotic Living Centre, where I can live and share with other people. In the meantime I hear about John of God in Brazil. For a while I've stopped chasing miracles and have simply got on with the day to day living with this disease. Making great memories and striving to live a life of purpose. But this is too tempting, and, I know a couple of the people going on the trip. So off I go to Brazil wheelchair and I, to chase another miracle. I fall in love with the energy of the place, and the non-judgement, and the absolute belief that healing on many levels is possible. I decide there and then to give up my current life and move to Brazil to heal.

Shortly after I get back from my trip I get a call from Guide Dogs to say my service dog, that I'd applied for, is ready. Hmm, yes, I had applied for a dog. I can take my time and think about this or I can make a snap decision. I know that if I put down the phone, I will go to Brazil and give up the dog. Instead I say yes, I'll have the dog. Goodbye Brazil, hello new life as a service dog owner. I have to walk the dog every day. Hello, I can't walk! So I get an electric scooter and a life filled with joy begins, as Shyann, my new dog, and I, explore our neighbourhood. I've lived here for 25 years and never really explored it, because of work constraints and then failing strength.

Now I have a helper who can pick up those things that have before lain on the floor until my twice weekly char, or my ex-husband, who now lives upstairs (yes he's back and living in the same house) have been around to pick it up for me. She oozes love, makes me laugh and gives me a reason to get out and about every day. She's made me redefine my job description. Part of my job now is caring for her, and I love it.

My job has also changed in other respects. My 23 year old computer software business has become a part time job, as I now facilitate personal development groups and am passionately learning and teaching Human Design.

For my 60th birthday I ticked another thing off my bucket list: I went for a microlight flight! What an adventure. I ached all over for weeks afterwards and I would recommend that anyone else who tries this, if you have weak muscles, get your feet tied to the footpegs, or get a strap around your knees to hold them together.  I had a serious case of inner thigh stretch because I could not control my legs in the wind.I damaged a muscle in my shoulder and can no longer stretch my good arm forward so have had to give up driving.  I have also had to find new ways of brushing my hair and putting on deodorant, as I can no longer reach the top of my head, nor under my arms.  Leaning my elbows on the counter to brace them and then bending down to my hands is my new way.  Also have to frequently ask for a straw for my drinks as the cups or glasses are too heavy to lift.

Life as I know it has changed yet again at age 64. My local restaurant, pretty much my only social activity, has closed. And now my primary carer, my ex-husband, has died.  I am devastated, as even though we were divorced, we'd been together for 37 years.  I now have huge decisions to make regarding our house, my future, my care. In the meantime I have been blessed with so much love and support from the networks I had set up over the years. A new chapter is awaiting me.

So even though:
* I walk down stairs backwards, clinging to handrails both sides of the stairs, and have had half steps built into the staircase to decrease the riser height on each step
* use strangely placed furniture to hand myself across a room
* no longer use my kitchen, which is too large, but have a 2 plate cooker in my office
* have a scooter-hoist in my modified car, which I can no longer drive myself
* struggle to get dressed, especially with multiple layers in winter
* sometimes get trapped by my bedding and struggle to roll over
* have toilet extensions to raise the height of the toilets
* have little rubber mats to stop my feet from sliding
* have constant backache, which is why I'm in bed by 6pm every night
* am considering getting someone to live in
* have an electric bed to help me sit up
* have a swivel table for my laptop in my 'soft office' (bed)
* have 'upeasy' cushions on all the chairs I use
* have to get other people to drive me, help get my hair dry, put on my jacket, carry my tea cup
* I now need daily help with dressing, eating and general help
I am happy and continuing my dream of my Symbiotic Living Centre. I am determined to make this disease mean something and be an example of living, not just coping or existing, but really living life to the full, in spite of it.

I am 64 years old.
July 2017
Myositis Awareness

Myositis Awareness

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