Tag Archives for " Spoonie "

Isolation: where did all my friends go?

Trust Him and let go

Sometimes it’s hard to accept that when you’re living with a chronic illness, people fall away, but it is something that commonly happens after a period of time, and it might even be beneficial.

Initially, once people are made aware of your struggles, you might have an outpouring of support and practical help from many around you, but over time, when you don’t improve, most people will inevitably drift away as they are unable to make taking care of you a permanent fixture in their lives. They have their own lives to navigate.

When you’re no longer in the same circles, no longer going out, no longer socialising, you’re no longer in their life unless an effort is consciously made on both sides to stay in touch and make things happen. I have seen this happen over and over again with so many people who fall ill. That’s why I don’t believe you should take it personally, it’s just a fact of life – only a precious few will remain, if you’re lucky.Continue reading

My wheelchair and I: shopping with the family

wheelchair in nursery

I actually left the house this week! Leaving the house is not something that happens very often when you have a chronic illness as debilitating as ME/CFS. Months can go by without seeing the other side of my front door. I have reached a point where I’m able to walk around the house daily without causing too much payback, but going out is still so utterly draining that it usually takes me days to recover.

This week I was able to leave the house for the first time in months. It’s my mum’s birthday today, but we celebrated a little early as our parents were here for their weekend. We went shopping together for the first time in ages!

It was a gorgeously sunny day, so I got dressed in a pretty floral dress and hopped on my wheelchair where I stayed all day. Knowing how taxing an outing is and how much sensory stimulation affects me, I tried to prepare as best I could:Continue reading