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:

I took extra MSM and celtic salt before leaving. I made sure to pad my wheelchair with a cushion and bring a little blanket with to keep my legs warm. With ME/CFS we have a lower body temperature, so temperature regulation can be difficult. I am always cold now, and being cold means shivering, which is an exertion on my muscles that will certainly cause payback.

I also wore my noise cancelling headphones all day and sunglasses to protect my eyes. I covered or closed my eyes when out in the sunlight, just to be sure I had done everything I could to minimise payback.

It was a lovely day. We went to Hobbycraft, Home Base and a supermarket, as well as stopping somewhere for lunch. I had a ketogenic packed lunch of meatballs and salad while my family enjoyed their meat pies.

My family took turns to push me up and down the isles so I got to see everything. I hadn’t been to any of those stores in years. It was so much fun! We took our time and moved slowly, this helps me a lot because moving too fast causes disorientation and even anxiety, not to mention the vibrations caused by the wheels running over the tiles or paving stones. The fact that it was the middle of a weekday also helped, there were very few people in any of the shops we visited.

I’m not sure if it was all my preparation that helped, or the ketogenic diet that is just helping my body cope better generally or perhaps a combination of both, but payback has been minimal. Praise God!

Don’t get me wrong, I’ve definitely been paying for my outing. I have been sleeping much more than usual, sleeping through my alarms, increased pain levels, constant internal tremors, noise sensitivity increased and my digestion utterly drains me after each meal causing me to actually just fall asleep wherever I am, but this is all mild, it could have been so much worse!

Although it was mum’s birthday, we all bought a couple of things. Well, my parents bought us a couple of things. I got a few art supplies and they bought us some matching ceramic pots for our plants as they were all in random mismatched pots on the windowsill.

My favourite item of the day was a cushion Dad found in an end of range bin in the supermarket! It is perfect for my wheelchair and even matches my new bedroom colour scheme, so I’m also using it when I sit at my desk. It’s high density foam, so firm with good support. My wheelchair is seriously lacking in padding, so this is perfect! You cannot believe how tiring it is to sit in a wheelchair for hours on end. Having good support is so vital to minimise the detrimental effects of sitting in the same position for so long.

Overall the outing was totally worth the days of increased symptoms and decreased functionality. Sometimes we just need to get out and see the world, take it all in and just enjoy a change in scenery. I think it does our minds and emotions a world of good despite the temporary hurt it might cause us physically afterwards.

Have you found any really helpful tools or tricks to minimise your payback when leaving the house?

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