Patient C’s Story – DM & Antisynthestase

My Journey.

I was a happily retired 69 year old woman in around September 2019.  My husband and I had just finished a half lap of Australia, from Victoria, through South Australia to the Northern Territory, then across to Western Australia and down the west coast, across the Nullarbor and home to Victoria. I was well, loving every minute of our travelling and planning the next trip in our caravan. 

I got the dreaded flu, I was hurting everywhere, muscles, joints, head, fever, chills and a rash.  I was then diagnosed with gall bladder problem and had it removed, little did I know my Myositis Journey had begun!

I got pneumonia and was readmitted to hospital as my dysphasia began and my lung function began to diminish my muscles were sore and weakening. I was admitted to ICU, I was very lucky, whilst the doctor was a Cardiac specialist, once cardiac problems were ruled out he continued to call on the expertise of other specialists, who thankfully sent me for more tests.  I met the consultant rheumatologist and I was transferred to another hospital were luckily after many more tests, drugs and a muscle biopsy, I was finally diagnosed with Dermatomyositis, Antisythetase.

I had a feeding tube and had lost my ability to eat, move, and live my life as I wanted to.  It was decided that I would need to go to rehab to regain my lost independence. When my dear friend visited she cried when she saw me trying to sit myself up!! We have been through a lot over many years and this shocked me so I decided there was only one way, find out how to do get my life back and DO IT!

My goal was to be able to get up the steps into our caravan and hopefully travel again and walk with my friend.

With the support of my husband and family I went to Rehab. and each day I set about doing something that I couldn’t do yesterday and texting my family the new thing each day, one day, comb hair, another get a sock on, another put my leg into the bed without assistance or even put on my knickers or a shoe on. I celebrated every small achievement and still do today.  

As the medications began to work, I had feeding tube removed and I learned to eat again (even though it was mush) but with the help of the dietician and the speech pathologist I graduated to healthy diet. 

It was the week before Christmas, I had progressed well and needed to be able to walk 25 steps to my door and walk up 4 steps into our house. I left rehab 3 days before Christmas 2019. 

I celebrated with the family at Christmas Breakfast and I continued my exercises and extending the amount of steps daily and on New Years Day my husband helped me get into the caravan in our front yard.  Another achievement celebrated.

COVID arrived and I managed the exercises myself with telehealth assistance and kept a diary of activities.  I continue with IVIG and cocktail of medications, I am lucky these are still working for me, with minimal side effects.  My friend and I are back walking twice a week and I am back walking my 10,000 steps most days weather permitting. I do Yoga twice a week via zoom and one in person session now that COVID restrictions have been lifted.

We have been away in Victoria in our caravan 4 times between lockdowns and in between monthly IVIG sessions. I have been able to manage well, I still get tired but allow myself some time each day to read or watch TV for an hour or so most afternoons.  I regard this to be necessary part of my daily planning and believe this is a small price to pay for regaining my independence. 

I am thankful for support I have received from the members of the Myositis Association, there were days during lockdown that were hard for everyone and phone calls and Zoom sessions have been invaluable.  Thank you. C

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