Saturday, 14 May 2016

Ellie's perspective: Getting a handle on ME

This post is part of the 'ME from another perspective' series which I am running to contribute towards ME awareness this year.

Ellie and I have realised that went to the same university. Ellie was diagnosed while she was at uni, and I had my diagnosis before starting, it turns out that we were actually studying at the same time. How different things would have been if we had known each other then! Ellie has decided to write about the ways which she has adapted her lifestyle to accommodate her ME. I have found this blog post to be both inspiring and eye-opening, I hope you do to!

When I was first diagnosed with ME at the age of 20, it is fair to say that I was somewhat in denial of the diagnosis, and refused to accept that I was going to have to change the way I live on a daily basis. A condition that induces chronic fatigue and pain is possibly the worst thing to hear when you are young, at University and incredibly sporty! Although it was very hard to come to terms with the fact I was going to have to stop participating in sport, and in a way life, like I used to, it didn’t take me long to realise I needed to make some adjustments to be able to at least try and reduce my symptoms and overcome the diagnosis.

After months of feeling very low and, looking back at it now, making things worse for myself, I finally got to see an Occupational Therapist. Thanks to the mighty Google, I had already researched most of what she told me in terms of coping methods and treatment, but somehow hearing it from a professional really made me wake up!

If was from this point onwards that I told myself the only way to get through this was to help myself out. I realised that although I had to cut the things I love the most from my life, I didn’t have to lose them altogether; I just had to make some adjustments. The two things I love the most are food (particularly the sweet treats!) and exercise. So I started thinking and realised that actually I needed to look at this asan opportunity to be creative.

Cutting everything I love from my diet was too daunting for me to handle all at once. So I have started to make small adjustments here and there. The main culprit in flaring up my symptoms is the dreaded refined sugar. At first glance, I thought this was going to be the end of all things tasty, but it was far from it. In fact I now enjoy baking and cooking more than ever before because it feels like more of an accomplishment when I pull the tray out of the oven or fridge and see that what I have created looks amazing, and when it tastes better than the ‘bad stuff’, I feel on top of the world! I also try and avoid gluten where I can, and coffee seems to be a complete no go now, but luckily I have discovered two alternatives, and two supplements to this already. A relief, as let’s be honest we all need a caffeine boost at the best of times, so try adding an ME flare up on top of that! Sharing these tips and recipes to help others is part of the reason I first started my blog and I love hearing peoples thoughts about my ideas.

What about the exercise part? For a while this was impossible. I just felt far too ill to do anything! And this was hard because a lot of people just think its laziness, and at University you can almost feel people judging you or laughing behind your back, especially when it’s a Sports & Exercise Science Degree you are doing. But I soon learnt these people didn’t matter and I just had to listen to my body. It wasn’t easy though, and I had moments where I really felt like no one understood, but my family, friends and boyfriend really did help me pull through. As cheesy as it is, if it wasn’t for them I don’t think I would be anywhere near as motivated as I am today. Anyway veering off topic a bit here. It took a while to feel well enough to attempt getting back into things, but after reading the spoon theory (check it out if you have no idea why I’m talking about cutlery!) and taking into account what I had been told by my OT about pacing, I renewed my gym membership and started with 10 minute cycle sessions. I gradually increased this, and on days where I didn’t feel up to it/had no spoons, I didn’t do anything. I am very happy to say that I am now at the stage where I can cycle for 20-30 minutes and complete a core routine on a weekly basis, and manage to get out of bed the next day and go to work. Yoga is also something I have recently started doing and although it’s so far only be very occasional; I have noticed it does help with stress and relaxation. When I’m having a bad flare up of symptoms and can’t really do anything in terms of exercise, yoga has definitely been my friend!

There we have it. That pretty much sums up how I have been ‘getting a handle on ME’. Don’t get me wrong I still have bad days, and moments where I can’t help but indulge in some sugary badness, but it’s all about balance. When I know I am going to be over-exerting myself, or over-indulging, I make sure I have a rest day afterwards to recover and build up spoons.

Thank you so much to Ellie for writing this blog post, you can find her online at @gettingahandleonme on Instagram, and on her blog which is!

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