My CFS/ME bucket list

When I first thought of starting a blog, the last thing I wanted was for it to turn into a pity party, I don’t want to come across all ‘woe is me’. Don’t get me wrong it is absolutely grim that I suffer from this illness, I wouldn’t wish it on my worst enemy. However, every cloud has a silver lining and I like to think of myself as an optimistic person. Getting diagnosed was the start of getting closer to recovering (something I addressed in my last post), it’s impossible to not think of all the things I want to do when I get better or even if I do recover.

One of the things we learn about CFS/ME is the idea of a baseline, I’ve spoken about the cyclical nature of the illness and how it can come in waves and crashes. The technical term is ‘boom and bust’, you have booms of highs and busts of lows. The idea is that you are able to find a baseline – a middle point where you don’t get spikes of illness. That sounds like a dream to me right now, although it’s hard to imagine not having the boosts I can surely live without the busts. Over the past few months I’ve started to curate a bit of a list of things I’d like to do once I’ve recovered / whilst I’m recovering.

1. Get a pet – most likely a rabbit

I know my mum is properly reading this absolutely cringing, however anyone that knows me will know my love for animals. I completely adore my cat and I had a rabbit whilst I was in school that I loved with all my little heart. I think animals are so therapeutic, I’d love to have that with me whilst I’m living in Brighton. I honestly think it would be so good for me to have something I’m responsible for, something to motivate me to get up and do something when I’m struggling.

2. Go Ape

Now this is a very random thing, but I have wanted to do an outdoor activity day like Go Ape for months now. There’s no way I could do a whole day of such adrenaline filled activity if I did manage to I think I’d be very ill for days after. I used to be so active and I miss being able to have a busy day without worrying about how long it would take me to recover from. If I am able to find a baseline that works for me, I could possibly construct a day that I’m actually able to do without feeling dreadful.

3. Get fit again

It’s completely understandable why I’ve lost all my fitness over the past year or so since it feels as though all I’ve done is lay in bed for most of it, however I really miss exercising and going to the gym. I miss being able to jump on the treadmill and just run for 20 minutes like everybody else, on a good day I manage 7 minutes straight now. Part of this is down to how CFS/ME affects your body when you exercise, it has lots of repercussions like the inability to regulate your temperature. I’d love to get build a routine with exercise in that works for me and allows me to rest without feeling like I’ve taken 3 steps back.

4. Get a job

This may sound like a big one, but I only mean a part time job, for the past year I’ve watched all my friends work and it just feels so frustrating that I can’t work myself. I’m sure majority of people would happily not work, and I’m fortunate enough to be in a position that I’ve managed without working so far. However I’m nearly 22 and haven’t worked since I was 19 now and would love to gain some independence back, and start saving money up – especially with both my sisters getting married next year.

5. Go on a city break

Granted this is something I’m sure everybody would want to do, however I’d love to go to a city and be able to roam around all day exploring. I was so fortunate that for my 21st birthday my boyfriend took me to Milan, and don’t get my wrong we had an incredible time, although it was impossible to not feel like my illness held us back in doing as much as we would like to. I recently went to Cyprus and at least three days were spent in bed resting and sleeping whilst my family were out exploring the island. At night I would have to lie down on a sun bed whilst we all sat together after dinner. I would love to just enjoy a new country/city without missing out on things.

6. Start singing again

This is something I can realistically start at anytime, however it’s a case of actually making the effort to practice and relearn technique all over again. I’m counting on the fact that once Callum (the boyfriend) finishes his masters he can help me practice and learn again. A little backstory, Callum plays piano and is currently drowning in Debussy, but in a few days he shall be finished and I can rope him into playing for me. I really miss singing and I think it’s something I will always want to have as a hobby.

See you next time pals x

Author: Ells Jayne

A 21 year old suffering from CFS/ME whilst studying at university in Brighton. Follow my story as I write about living with an invisible illness whilst studying and trying to launch a career.

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