Lost time

I’m back- finally! As you may know I was struck down with a particularly bad lower respiratory infection during the New Year period, and was consequently ill for over a month. Until a few days ago I was unable to leave my home throughout that time. So unfortunately, 2017 has not begun how I had hoped or expected.

Anyone with muscular dystrophy will know a cold is never just a cold for us. I dread the British winters and the circulation of unavoidable viruses it brings. For me, sneezing and a sore throat inevitably and rapidly develops into a full-blown chest infection. Bring on the 24/7 NIV (non-invasive ventilator), regular nebulisation, antibiotics and inhalers.

At times I’ve had no choice but to admit defeat and blue-light it to hospital. But stubborn as I am, if I think I can cope with the resources I have within my home, that is where I choose to remain.

I have noticed over the past few years the duration of my illnesses have become increasingly prolonged. I missed the entire summer of 2015 to a chest infection which lead to pleurisy. From the end of May to the end of July, I was stuck in my living-room, sat in the armchair night and day with my trusty vent keeping me going. Several GPs and physiotherapists attended but despite their best efforts, none could offer any productive help or advice – nothing I wasn’t doing or didn’t already know.

I was exhausted mentally and physically, but despite my ongoing struggle I couldn’t help but feel guilty for putting my parents, whom I live with, through the experience. They have no choice but to watch helplessly and with desperation as their youngest child battles with her failing body. “What can I do?”, they ask. But there’s nothing they can do. I always tell them I’ll be fine, it’s just a matter of time.

Having thoroughly depressed you with that cheery and fairly pointless update, I’ll bring this particular post to a close. Now finally on the mend, I intend to resume where I left off with the blogging. ‘Oh goodie!’, I sense you cry with enthusiasm. I realise I’m more than likely rambling away to myself here but writing serves to make me feel purposeful, perhaps even contributory in some way.

January has for me been lost forever and I can’t get that time back. It’s so frustrating being unable to do… anything! Even just going out for a ride in the car is a major highlight for me right now. When all you see day after day is the same four walls from the same seat in the corner of the room, cabin fever soon sets in.

Today, seeing the first daffodils of spring starting to emerge filled me with much needed optimism. There will doubtless be future episodes of ill health to contend with. But for now I plan to recharge, re-energise and refuel. Bring it on!

3 thoughts on “Lost time”

  1. Hi Carrie, I’m so sorry you had to go through such a horrendous and depressing time..MD just simply sucks. You’re youth, optimism and vibrancy makes it even more unfair but perhaps they also help you bounce back with your ability to have gratitude for what is beautiful around you.
    Your article/blog hasn’t been pointless anymore than an article on a new pain relief remedy or the state of the politics (bad example eh?) or the stats on domestic violence or a random act of kindness. You write well and I’m sure it’s as cathartic for you as it is interesting and informative for those who read and start to understand the frustrations and challenges and times of hope when living with a debilitating condition.
    I love England in Spring – it will be beautiful. We have been lucky here in Melbourne, Australia so far this Summer as we have had more rain and the gardens are quite green and pretty – nearly as gorgeous as the U.K. 🙂
    Keep up the great work and take care !!!


    1. Leanne you’re too kind! Thankyou so much for continuing to support & read my ramblings. I’m glad what I have to say resonates and isn’t simply in vain.
      I too love the Spring & can’t wait for it to arrive in full bloom. Everyone seems so much happier when the weather starts to improve & the countryside awakens from its Winter slumber.
      I’ve never been to Australia but always, always wanted to visit. Here’s hoping I’ll get there one day.
      Thanks again, much love & best wishes to you 🙂

      1. Not kind at all – very empathetic to your situation and wish you didn’t have to go through it is all. I always feel more down when Winter is a long one especially now that I am not as mobile as I had been lucky enough to be used to. That really does make the onset of Spring even more exciting!! Enjoy watching the colours unfold 🙂

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