Helena’s ME Story

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Me on a family day out to the beach in 2011.
Me on a family day out to the beach in 2011.

I have had ME for over 30 years. It’s a fluctuating condition. I had it quite severely in the early years, was always ill, and often hospitalised with Pneumonia, Bronchitis, and various other infections, the most life threatening being Bacterial Meningitis. Over the years, I improved slowly, with a few setbacks following illnesses or operations – always two steps forward, one step back. I managed my activity levels, slept in the afternoons and watched my diet. I slowly improved enough to work part time and manage a family. I even managed to sing in a band, which is where I met my husband. Over the following years I fluctuated between moderate and mild symptoms until August 2009 when I had a severe relapse. Over several months I lost the ability to read, drive, chat

and even walk. I was in constant pain, always dizzy and had endless flashing lights around my vision. My body felt as though it was in a constant state of anxiety, with continual ectopic heartbeats and adrenalin surges. On my worst days, I couldn’t even hold a conversation, it was like watching everyone through a blurry telescope and hearing them from underwater. This was my lowest point, people I believed to be friends drifted away and I became quite depressed and isolated. Without my income, we started getting into debt and we were forced to sell our house and buy a smaller property. As I could no longer drive and our son was about to start college, we chose to move from our quiet little village into Ely.

This was two years ago, and it turned out to be the silver lining in my darkest cloud and a turning point for me. On my better days I started walking into town, initially with a frame. I would rest at a coffee shop or in the library, and then walk home. Over time, I gradually grew stronger and more confident. I started meeting and chatting to people. I was open about my illness and found people responded positively. Someone suggested I join the Ely Amateur Dramatic Society to help me start socialising again. I offered to help back stage and ended up with a couple of lines. This led me to also join CAT Theatre Company and I now help out on the committee. In the last few months I have also managed to start singing again, although I have to block out a whole day of rest before and after every gig in order to conserve and reboot my energy levels.

My birthday last year -fundraising for ME Research.
My birthday last year -fundraising for ME Research.

For me the hardest thing of all is not been the pain or the cognitive difficulties. It has been coming to terms with a different me. The me who can no longer multi-task, who can no longer think and act quickly, and who isn’t the person the family turn to because ‘Mum always knows’. I am no longer the Mum who regularly cooks Sunday Dinner for 12 people. I am no longer the sorter out of family squabbles or the manager of staff and projects undergoing change in the workplace. I am a completely different person. I think and behave in a different way. I have to conserve energy before any activity and rest for a long time afterwards, which means having to carefully choose what I spend my energy on. I’ve had to accept that simply getting the washing done is a successful day’s work.

Finally, I have finished grieving for the old me and have come to accept this new me, this slower, less productive, but more patient and more tolerant me. I’m much more appreciative of the things I can do, and find I’m much less judgemental of others. And actually … I’m OK. I take time to enjoy the little things, spending time with my family, having coffee with friends, singing with my band, helping on committees, managing the Ely ME Support Group and doing other voluntary work whenever I can. Life may take exceptionally careful managing, but it’s full of little pleasures. I’ll take that!

Helena