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

red MG
I loved my little MG!

I wasn’t prepared.  It was a real a shock. An illness that has no cure? I wasn’t ready for that! 16 years ago when I was diagnosed little was known about it and without the internet there was no access to the many groups now available. My GP made it very clear that there was nothing he could do for me and that was that.

I was pretty much bed bound for weeks.  I didn’t have the energy to wash when I had a shower and needed to rest after just standing under the water for a couple of minutes.  Just weeks earlier I was at the gym, now I was so out of breath walking up stairs that I was prescribed an inhaler.  My entire body felt like it had shut down. But luckily I’m ridiculously stubborn, I don’t like being told what I can and can’t do, not even by my own body!  So I set about finding ways to get my life back.

And I did.  And it worked, for 10 years.  And then I took my eye off the ball.  I’d been so well for so long I started to tell people that I had been diagnosed with ME but it must have been a mistake.  I stopped being careful.  And one day I found myself staring at the results of a search I’d done on my computer at work.  I was having another bad day so I popped my symptoms into Google just to see if there was something I could do to help……and there at the top of the screen was a post on Myalgic Encephalomyelitis symptoms.  Did I feel like an idiot?!

So as I work my way out of this relapse, here’s what I’ve learnt about living with ME.  Not just existing.  Not just getting by.  But really living, taking back some control, not missing out on the important things and enjoying life.  It is a pain because every day I’m second guessing what’s best for me that day.  And some days I get it wrong, but, most days it works and I’ll continue until a cure is found.  Then I will happily go back to living a ‘normal’ life!

Eat has healthily as you can

fruit and veggiesFor me this just makes sense.  It wasn’t something I really focused on before my diagnosis, I was young enough and healthy enough to function OK no matter what I ate.  But my body was struggling so giving it proper fuel seemed logical.  I now avoid processed food, count my 5 portions of fruit & veg each day, choose natural foods and cook from scratch.  As much as possible, I have my bad days too!  I also supplement my diet to ensure I have no nutrient deficiencies, I have an extensive supplement routine to ensure I cover my vitamin, mineral and amino acids needs at the start of the day.

Be as fit as you can

keepfitNow I know this is going to be controversial. I often see people in ME/CFS groups debating exercise and generally the consensus is that if you’ve got ME you should stay away from any kind of physical exertion. I agree that overdoing it is really not good so the key for me is finding the right level for me that day. After my initial diagnosis I was unable to go to the gym, lets be serious I couldn’t even wash in the shower, so I bought a cross trainer and stuck it next to my bed.  Did I mention I’m stubborn?! To start with I could only manage 20 seconds on it, but over the next 6 months I built up to 20 minutes one extra second at a time.  During my recent relapse I’ve tried to keep up my gym with varying success.  Over time I’ve had to drop my sessions right down, less weight, less reps, less time.  Some days I’ve had to walk out of the gym.  Some days or even weeks I just haven’t made it at all.  But I am now most definitely on an upward track. Having brought my workouts right down I am now slowly bringing them back up in a very structured way and that seems to be working pretty well.  I feel stronger and in turn I’m better able to deal with any bad days.

Have goals

aim and goalsObviously we all have the goal of getting better, but, even while we’re ill it’s important to have other goals.  Why? Because no matter what kind of day I’m having, good or bad, they’re a focus. Even the smallest thing like getting organised to actually do something on another day moves me closer to my goals.  That way I don’t feel like I’m wasting any time even though I may go slower on some days!  When the brain fog sets in and I can’t think straight I can still work on my goals because I’ve already done the thinking.  And on good days I can just get stuck into what needs to be done.

Plan your days

Working-ScheduleI have limits, and they can vary, so I find planning a really important part of my management. I keep it simple, I use the calendar on my phone, and I schedule in everything!  I have to admit partly so I can set automatic reminders so I don’t forget things – have you seen how much you need to remember with three kids in the house?!  But it also gives me an easy way to look at the next few days and work out if there’s a chance I’m going to overdo it and hit the wall.  If it all looks a bit much then I’ll look at what I can move or what help I can get.

Stick to the middle ground

middle groundI’ve got to be honest, the stubborn, impulsive twenty something year old inside of me still really struggles with this one!!  What this means for me is I try to do a little more than I think I can on a bad day but less that I want to do on a good day.  For me on a bad day the ME has control of my body, that means I need to be careful and don’t feel able to do much. But I don’t completely give in, I do at least one more thing than I feel I can.  Clearly this works for the stubborn part of me but I feel I need to look after the non-ME part of me, even when I’m not fully in control.  On a good day I feel like I can conquer the world!  And that’s dangerous because I still have limits, I’m just not feeling them that day.  So I do less than I feel I can to prevent me breaking my limits.  For me sticking to the middle ground has smoothed out some of the highs and lows I was having, allowing me to steadily improve day by day, week by week.

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