Happy Halloween, folks!
As much as I love the spooky season, I’ll be glad to see the end of October this year.
I fell ill on the first Saturday of the month, and I’m still not fully recovered.
It’s now over 4 weeks since I left the house, or saw anyone other than immediate family and carers.
For me, this isn’t unusual. Prolonged periods of chronic illness and isolation are, unfortunately, all too familiar.
A simple cold can very quickly progress into pneumonia – a frequent occurrence over the years, resulting in lengthy hospital admissions.
The vast majority of people don’t understand how I can be so ill for so long. Why would they? It’s hard to comprehend something you’ve no knowledge or experience of.
This is why my primary aim is to inform and raise awareness of the rare condition, Ullrich congenital muscular dystrophy.
Most so-called medical professionals are totally clueless. It’s therefore no surprise that I’m met with blank faces when telling people about my disability.
Explaining the ins and outs of my condition and how it affects me, can be exhausting. But it’s also important.
I’m almost 34, and, for me, the most debilitating and frustrating part of my disability is the daily fatigue and impact on my respiratory health.
As the saying goes, ‘health is wealth’.
Living with Chronic Illness
It can be incredibly difficult to remain optimistic when living with a progressive condition and chronic illness.
This past month has been tough!
Following three decades of cancelled plans, missed opportunities, and life on pause, here are a few things I’ve learnt:
1. Never make decisions when at your lowest.
2. Try not to withdraw or push people away. Knowing I’m unable to commit to plans, it can be easier to distance myself from people to avoid letting them down.
3. Reach out to loved ones.
4. Find joy in simple things.
5. Don’t waste valuable time, energy and effort on that which doesn’t serve you.
6. Set goals and make plans!
7. Focus on what and who matters most to you.