ME Tips: UK Fitness Day

A VERY different post from me but I’m trying to be big and brave here…

Its U.K. Fitness Day today – “a chance to highlight the role physical activity plays across the UK”. I thought it would be a good opportunity to share the role that physical activity has played in my life as it’s been quite a journey! 

By sharing my story, I’m hoping that I might be able to encourage someone else who’s struggling to use of some form of “exercise” as part of their recovery. But also to get it right. You’ll see what I mean in a sec! Here goes.

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ME/CFS & PHYSICAL ACTIVITY 

Back in 2007 I was basically bedridden. My speech was a bit strange, concentration had disappeared and even getting from my bed into an armchair was hell.

If I did attempt to get up, my body wouldn’t have any of it and I’d just collapse. It was such a regular occurrence that even my 9 year old brother started to find it ‘normal’. He would find me, shout “Mum, Jess has gone again”, wheel down the office chair, plonk me on it and wheel me back to my room.

With the help of doctors and the never ending support of my family, we made a GET plan (graded exercise therapy) to get me back to normal. Every 30 mins of my day was planned, from showering to TV time. Then every 2-3 weeks, it would be reviewed and we’d add extra activities if I was up to it.

The timetable helped to ensure I:

1. wasn’t doing to much of any one type of energy (physical, mental, sight, hearing etc)
2. was making slow and steady improvements

I was home schooled through my GCSEs. This started at 5 mins of teaching a day for a couple of days a week and built up to 30 mins after several months. Still find it pretty cool that I sat my GCSEs in my kitchen with my dog at my feet and a bowl of cereal.

My “exercise” was built up too. We started by getting me into an armchair for a certain amount everyday day (bit like the pic below!) and built up to a 5 minute walk. After a few weeks we moved to 7 minutes, and kept adding time until I could walk a reasonable distance. 

Exercise was vital for building up my strength both mentally and physically. I’d cry at the thought of it most days. Simply putting my coat on was exhausting enough, let alone putting one foot in front of the other. But, I begrudgingly had to admit it was helping. It built up my physical strength, showed me I still had some determination buried in there and provided some measurable progress. 

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THEN I RAN A MARATHON

Ok, it was a half marathon… but I’m going to run the full thing one day.

By around 2010 I had built up to living a completely normal life. I didn’t even think about my ME. Believe it or not, I got to the point where I was able to run a half marathon in 2016!! One of my proudest moments ever was crossing that finish line!!!!

Yep, this level of exercise made me feel more confident, brought a huge sense of achievement, seemed to strengthen my immune system and it most importantly it was (nearly always!) fun. Until…

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I TOOK “FIT” TO THE EXTREME

The half marathon gave me the exercise bug and in true Jessica style, I didn’t do it half-hearted. I was attending 4-5 x 1hr “1000 kcal” HITT classes a week, walking 50 mins home from these mad classes and running to work every morning at 5.30am.

You could argue that this is when I was at my fittest. And at the time I certainly would have agreed. But now I can see it wasn’t. Why?! Well, I did enjoy it but also it became a bit of an addiction. When every muscle & brain cell was telling me to not go, I would be there otherwise I’d feel bad after. That is not the definition of fit and healthy!

Along with lots of other challenges (that I hope to talk about one day!), the fact I had switched off my ability to my body meant my ME came back to slap me in the face in 2017.

Its still here, its a still a battle, but I’m very slowly getting better and I’ve now truly learnt the importance of balanced exercise and LISTENING TO YOUR BODY!!!…

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SO, WHY DID I WANT TO WRITE THIS

1. Yes, physical exercise is hugely important for your health and can play a significant part in your recovery, both mentally and physically. It’s a stress reliever, gives you a purpose, gives you measurable goals, and helps you get out of bed! I really really believe in this and think everyone should find something that suits them.
2. It hasn’t got to be Joe Wicks workouts (although I kinda love him) and burpees. It can be getting into a chair from your bed, stretching, swimming, yoga, walking, whatever! 
3. But it HAS to come with balance. You’re only “fit” if you’ve got all that going on AND you can also listen to your body and rest when you need. I’m still learning this haha

For me, the perfect balance has ranged massively – from GET plans to half marathons. Right now, the “perfect balance” is somewhere in the middle. Some days I walk an hour with my mum and our 2 lab puppies, other days I just walk about the house.

It’s a fine balance but its a balance you definitely need to find to make you the healthiest you can be 🙂

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ME TIPS

I asked you guys what else you’d like to know about my ME so I thought whilst we’re on the topic, I would answer a few:

*What are your top tips?

• Plan your days. I always plan my day the night before. Even when Im feeling good. Keep a sensible balance between physical & mental energy. Remember even the TV is an energy – mental, hearing and sight. Maybe swap it up for an audio book sometimes to give the sight a break?!
• Find some form of exercise. Anything at all. Even practise touching your toes every day. This was my exercise for a whole year in 2017!

*How to help with a blip?

• I find that it’s mentally really difficult to just take yourself to bed and rest until you feel better. If you can’t switch off, you won’t be recovering anyway.
• 3 things I found that help: Massage, Reflexology & Acupuncture. There’s something about having to sit somewhere for an hour or so, with something physical to focus on (e.g the massage itself), that allows to to switch into a meditative state and begin repair.
• When I’m feeling really pants, massage is not the one I opt for as it hurts my sensitive muscles too much for me to relax. At this time, I really really recommend reflexology. I fall asleep everytime which is odd because I do not usually like someone touching my feet & I am not one to fall asleep in the day!! Ask them to focus on energy levels.

*What mental support would you recommend?

• @MEassociation: Whilst the majority of my insta is food, I also follow ME people as it helps to see there’s others feeling the same way as you. I also follow the tags #mecfs and #invisibleillness.
• Taadah lists. If you need to feel like you’re still achieving even when you’re feeling rubbish, take a leaf from Mrs Hinch’s book and write a reverse to do list, ie keep a running list of all the things you’ve actually done. On bad days I even write: “shower, ate breakfast, got dressed” because even these are achievements you should be proud of. 
• Acceptance therapy. Google it! Its about accepting what you’re going through and not making everything a fight.
• The Happiness Trap. Fab book with looks of acceptance therapy in it. Get the audio version if you’re extra tired.

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Hope there is something interesting/useful in there for you!! Shout if I can help.

Jess x