Christine’s ME/CFS Journey

I love my new life. A bubble of joy rises in me every time I think of all the things I can do, big and small. I even laugh out loud to myself in public and get some strange looks but I don’t care. Every day is like a new beginning. Everything I do feels like I’ve never done it before.

The elation I feel is tremendous. I take nothing for granted, it is all a pleasure. Catching a bus, walking down the street, talking to people, being aware of other people and their reactions. I feel alive and alert when I wake up on a morning and can’t wait to get out of bed.

I take great pleasure in being up and ready before my boys get up. The boys are delighted I’m better, most of the time. They don’t like the fact I am well enough to be strict on tidying up, doing homework etc, but they’ll get used to it! Secretly I think they are pleased even when I tell them off!

“James, my 16 year old said on the Saturday after I did the course, ‘You’re like you were when you used to be at work.’ He remembers me pre M.E. Michael, 13, was only 3.”

My husband Brian and I now go out for walks for hours. I’ve discovered beautiful wooded areas with streams and waterfalls in my area that I lived in for over 16 years and never knew were there. We spend a lot of time in the garden and I can help with the heavy stuff now too. It’s a big change for Brian, he has only known me with M.E.

The rest of my family and friends can’t believe the change in me. These are some of the things they have said:

• seem my old self
• conversation flows without the usual stumbles or forgetfulness
• driving with confidence again
• you are more energetic than me (this from a friend constantly on the go)
• you look well and lively
• you look great and bright
• you’re so full of energy
• your movements are more fluid – normal
• good to see you much more relaxed
• Brian has a new wife and the boys have a new mum

What I’ve done or started to do:

All the normal everyday stuff people do, and I used to have to plan around, I can now just do:

• Caught a bus (several times now and gone to the top deck!)
• Shopped in town (a few times)
• Ran up stairs (first time I didn’t realise till I got to the top!)
• Doing all domestic stuff without thinking: change all the beds, hang out clothes, vacuum – stairs included
• Cooking more complex meals, all by myself
• Exercising: started small at home, now doing brisk walks of 2 miles; time reduced from 40 minutes to 30 in four weeks; joined a gym
• Finished my assignment for my Awareness of Dyslexia Course
• Started building a family tree – wanted to do this for ages
• Put a ‘feeler’ in for a part-time job that has become vacant, work I love to do

I am still getting used to this new me. I have to remind myself that it’s ok to be tired in the evening – it’s normal! After I’ve done an activity, like digging in the garden, and look back at what I’ve done, I’m amazed.

I’ve joined a gym and hope to gradually get fit and also enjoy the activities. I loved swimming pre M.E., so I’m looking forward to enjoying that again. I have joined where my friends go so we can have fun together.