ME Awareness: The Real ME – How This Disease Affects Me – Rog’s Story | 06 May 2019

 

Helen Hyland, Fundraising Manager, ME Association.

It all started with a simple email from Annie. A year and a half ago, she wrote: “My husband is a sufferer and I am planning to complete 40 races before I reach 40. I would like to raise money for the ME Association…..”.

It has been a joy supporting Annie, watching all her laughing photographs appear across social media as she’s ticked off the challenges, battling to complete them all before the big 4-0 in November.

But behind the laughter is a very serious reason for her pushing herself to the very limits for M.E.

Annie’s husband, Rog Warner, writes:

“I have suffered from M.E. for approximately 10 years, although it took many of those years just to get a diagnosis.”

“It has gradually worsened over that time, but I struggled with having a full-time job until the beginning of 2018.”

“I would get through the working day with caffeine and buckets of energy drinks and still struggle. In the end, there was no amount of caffeine or taurine that would do the job.”

Rog Warner

“I would certainly say I have been lucky in the sense that I have had mild M.E. that has gotten worse over time. I still generally get a chunk of the day in which I feel close to normal (or at least what I think I remember normal feels like!).”

“If I ever mention my M.E. to someone new the first thing they ask is: “What’s that?” If I respond by calling it Chronic Fatigue Syndrome, they’ll often respond “Oh, so you’re tired?” thinking that a sleep is all I need to get better.”

“I find this illness very difficult to explain especially as most people only see me when I am alright – when I’m not alright, I will be in bed or on the sofa.”

Rog Warner

“My best way of explaining it is to compare me to a car doing a journey (I’m the car and the day is the journey). But it’s a car without a fuel gauge and I’ve no idea how much is in my tank to begin with.”

“I often get a splutter from the engine telling me that my energy is running out, but then I simply have to say, “Worst luck” and stop and pull over. But stopping is so hard.”

“I like doing DIY and physical jobs. Being quite handy, there is not much I won’t (wouldn’t have) put my hand to. But that is where I most often go well past the point at which I know I should stop.”

“I’ll know that I should stop, but that would leave the task unfinished. So instead I dig deep and carry on, complete the job when clearing up can be more than I should do in itself.”

“When moving into our present home, my condition was not too bad, so we started to tackle the kitchen. But then my condition worsened, and DIY became impossible so what should have taken two months has taken nearly two and a half years to complete, little-by-little. But we got there.”

“I constantly fall into the trap of fooling myself that I am OK.”

Rog Warner

“If I have a good day, then my brain seems to revert back 10 years, to when I felt fine and I make the mistake of doing too much again and again. I can’t help myself. But then, of course, the next day or two later, it will inevitably come back and bite me in the behind and I burn out.”

“One of the hardest things about this illness is coping with the guilt of not doing my bit. On OK days, I find it so hard to just sit and do nothing or even to pace myself: it just isn’t in my nature.”

“The guilt gets to me. If I don’t do things when I do feel OK then when can I do them?”

“At the beginning of 2018, I was forced to give up work. I was also re-diagnosed as also having Fibromyalgia and restless legs syndrome, (it really feels as if I’m falling apart sometimes).”

“Sometimes the inevitable pain and fatigue is just the price I have to pay to get things done.”

Rog Warner

“Giving up work was a huge step and not one I took lightly. I struggled to stop entirely, but there are only so many documentaries and TV shows to binge-watch.”

“I’ve now started my own business which means I can work at my own pace; I can take a break when I need to; I can sleep in the middle of the morning if I have to; and I have more scope to stop, pull my M.E. car into a layby and say “That’s enough for the day”.”

“Hopefully it means that I have a better chance of not falling into the trap of doing too much in the future. I can’t say I’m there yet, but I think that I am getting better at it.”

If you would like to support Annie’s efforts or learn more about her madcap exploits for M.E. please visit her JustGiving page.


The ME Association

Real People. Real Disease. Real M.E.

We are a national charity working hard to make the UK a better place for people whose lives have been devastated by an often-misunderstood neurological disease.

If you would like to support our efforts – particularly during ME Awareness Week – and help ensure we can continue to inform, support, advocate and invest in biomedical research, then please donate today.

Just click the image opposite and visit our JustGiving page for one-off donations, to establish a regular payment or to create your own fundraising event.

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