Living with ME – my latest crash

I always hope that either I will get better or at least learn about what makes me crash.  But while I’m definitely in a better place than I have been in the last 5 years, I’m not back to full health. ME is still very much present and what makes me crash varies so much from day to day, week to week, month to month that I haven’t quite worked it out yet.

What is a crash?

If you have ME you’ll know all about them, but if you don’t then a crash is a sudden decline in health that’s very hard to get out of. Suddenly, for no obvious reason, you’re just not able to do the things you were able to do yesterday.  Such as walk up your stairs at home without getting out of breath, stand too long or pick up your child.  Arms that worked, muscles that had strength just don’t anymore.  And with a body that no longer functions, comes a brain that’s not really sure with what’s going on!

This time I noticed it

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How I deal with the gym

I have ME, I’ve never been particularly sporty and I’m not really known for my willpower…..but despite that I love going to the gym!  If you know anything about ME then you’ll know I’m playing with fire with this one as a major part of the illness is post-exertion malaise.  To put it into simple words if I physically overdo it I pay for it – big time.  Not that I’ll be a bit sore or a bit tired after, but I’ll be completely wiped out, unable to function or think properly for a period of weeks or months depending on how wrong I got it!

So why do I go?

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Update May – living with ME 2017

Well, this was meant to be posted weeks ago!  And from that I’m sure you can correctly work out that all has not gone as well as hoped in the last few weeks….

But some of it did…… in the spirit of being positive let me start there.

After February half term  I made the decision that I felt strong enough to ‘get back into routine’.  What that means for me is being really focused on my health; taking the vitamins that I know help my body function better even when I don’t feel like it; taking the horrible powder supplements that make my body tingle and itch but go straight to the mitochondria giving them the energy they lack while minimising the effect of the lactic acid build up in my body; eating healthily (well most of the time, weekends don’t really count in my book!); fasting two days a week; listening to mindset blueprints regularly; getting back into the gym and of course being out and about on my bike with the kids. Continue reading “Update May – living with ME 2017”

Living with ME 2017… goes!

I want to start this post with saying a huge thank you to everyone who took the time to comment/text/message/chat to me about my last blog post.  It is still massively weird to be opening up about this side of my life, but, having now spoken to so many people who are living with similar issues, either ME or other invisible illnesses,  I am happy to know my uncomfortableness (is that even a word?!) has been worth it so far!

One of the things the last few weeks has confirmed to me is that I can’t write for jack when I’m not well!  But what I have been able to do is jot down random thoughts which I’ve used to write this post.  And what’s come through the most in those off the wall ramblings is what I actually do on my bad days so that’s what I’m going to focus on in this post.

Not looking my best but proof I made it to the gym!

Continue reading “Living with ME 2017… goes!”

Living with ME 2017……..time to open up

It’s been 4 years now since I first Googled my symptoms while sat at my desk at work in Gaydon………now I knew I had ME, but to be honest having had it under control for the last 10 years and with life taking over it clearly wasn’t in my mind enough!

Life was busy, I’d just returned to work after maternity leave with our third child.  The work environment I returned to was very different to the one I left.  Our two boys were in school, my daughter was in nursery.  I had no time for myself.  And so I focused on everything else around me and at some point I pushed it too far, and the evidence was staring at me from the top of the computer screen – top results for the symptoms I’d Googled was ME.

Continue reading “Living with ME 2017……..time to open up”

2016 Goals

A new year is like a blank bookNow I want to make it clear right upfront that I don’t do new years resolutions! New year’s resolutions for me tend to be more like ‘rules’. Rules which are simply unrealistic, all come into effect on one day, and, break them just once and they get completely thrown out of the window! But what I have learnt since leaving the corporate world is just how important it is to set personal and family goals each year, to have long term and short term goals that give me focus and ensure I don’t get to the end of the year and wonder why my life’s not where I want it to be.

Personal goals are so often forgotten Continue reading “2016 Goals”

Living with ME (Myalgic Encephalomyelitis)

Our apartment was in this gorgeous building!
Our apartment was in this gorgeous building!

ME literally comes from nowhere. For me before the diagnosis life was good, I had a great social life, I was driving a sports car, I was buying a flash apartment with my boyfriend, I was fit and healthy and going to the gym regularly and work was…….well work! And then I got ill. Nothing major, just a virus my GP said. So I did what you usually do when you’re ill, rested and took it easy and waited to get better…….but I didn’t. After a few more visits to my GP and various tests I was diagnosed with Myalgic Encephalomyelitis Continue reading “Living with ME (Myalgic Encephalomyelitis)”

My top 5 tips to more effectively manage your invisible illness in the workplace

I have an invisible illness, 16 years ago I caught a virus and didn’t get better. Eventually I was diagnosed with Myalgic Encephalomyelitis, it has taken me many years to understand the illness let alone spell it! There are many of us suffering with these invisible illnesses, which despite being crippling at times, have no outward visible effects. That brings a set of unique challenges that need to be managed to minimise the impact on both yourself and your job.

There have been two marked occasions where I have needed to involve the company I worked for in my illness due to the symptoms being so bad; the first when I was initially diagnosed and was really ill for 2 years; the second when I suffered a massive relapse 10 years later. I got it wrong on both occasions! To be fair I got it wrong because I was ill, my symptoms made it impossible to work out what I needed to do. So with the benefit of hindsight, and being in a better place now, here’s my top 5 tips for managing your invisible illness in the workplace: Continue reading “My top 5 tips to more effectively manage your invisible illness in the workplace”