How to make the most of life when faced with great restrictions due to severe ME?
I have been living with severe ME for several years. The restrictions of ME have meant that my level of activity has ranged from lying on the bed all day, unable to stand, only just able to sit up in bed and chat for a few minutes – to moving around the house and garden in an electric wheelchair, riding a mobility scooter for 20 minutes, chatting for an hour and a half.
Before the illness I led a very active life – as is the case with most ME sufferers. I was a full- time infant teacher and I played the piano at our school. I acted in amateur dramatics and played the flute in a concert band. I swam, walked, went on foreign holidays, regularly played Bridge and had a full social life.
What a change from all that! I have had to come to terms with living a very different sort of life now. Most of my emotional stress comes from yearning to do the things that I used to do and feeling frustrated with the limitations that now dictate my life. When I am able to truly “be in the moment” appreciating what I have right now, however limited, then I am at my happiest. Obviously this is difficult to sustain. One of the most difficult traits of this illness is the way it allows you to begin to get your life back, and then cruelly snatches it away again.
I’m continually trying to find ways to create the best quality of life I can, whatever stage the illness is at – to really savour the few minutes activity between rests, to make the most of limited energy and concentration by doing something I really enjoy. That was how I developed the idea of “capturing the essence.” Put simply, it’s about identifying the enjoyable essence of a favourite activity and trying and to find a way to give ourselves that experience – despite the mental and physical limitations.
With some activities it’s possible to do the same activity as before, but for a shorter time. I have often had one course in a restaurant and taken the dessert home to have later, after resting! I have also seen several first halves of plays, and sometimes the second half two days later – and at the matinee, as I cannot be out late in the evening. Our local theatre now gives me complimentary tickets for the second performance. Maybe the day will come when special two-part ME tickets are available!
Some activities, however, seem impossible to do anymore. This is where “capturing the essence” works best. Here are some ideas and ways to re-create the essence of the experience depending on the severity of the illness at the time.
Activity – walking by the sea –
the essence is being by the sea, moving, fresh air.
• Lie on the bed with the window open listening to sea sounds on a CD.
• On the bed look at pictures of beautiful seaside views.
• Watch a TV programme like “Coast” and imagine being there.
• Sit by the sea in a wheelchair.
• Get pushed along the sea front in a wheelchair.
• Ride a mobility scooter independently by the sea.
Activity – being an infant teacher –
the essence is being with children and helping them to learn.
• Have friends’ children to visit and lie on the bed reading stories to them, sharing books, hearing them read, singing. Do writing, drawing, cutting and sticking activities with them on the bed. I’ve found that children love being on the bed with me!
• Have a sand and water tray in the garden for friends’ children.
• Teach piano for a few minutes to a friend’s child.
• Go into the school where I used to work for regular short visits to read to the class or listen to children read.
Activity – amateur dramatics –
the essence is performing, learning a script, being part of a team, working on something creative with others.
• Learn and recite poetry with family and friends
• Read a story to a friend
• Record a CD or video reciting poetry
• Play scrabble, Pictionary, charades etc with others
Activity – playing music in a group or orchestra –
the essence is creating music with others and performing
• Play duets at home with a friend
• Perform the duets at home for family and friends, even if only for 5 minutes!
Activity – swimming in the sea –
the essence is the sensation of floating in water, smelling the salt water on my skin, being in the sea
• Paddle in the sea from the wheelchair – not easy, but it is possible!
• Paddle in a bowl of seawater on the prom or even in the garden!
• Splash seawater over my body
• Lie in the bath and imagine………
• Use a hoist to get into a swimming pool and use floats if your muscles cannot keep you afloat
Activity – gardening –
the essence is being outside, feeling the soil, making things grow
• Have raised beds that you can reach
• Use pots raised to suitable height
• Plant seeds and bulbs in small pots that are manageable to lift
These activities may not be your favourite hobbies. However, I hope that my idea of “capturing the essence” may encourage you to be creative and to find ways to adapt your chosen activities in order to give yourself the best quality of life possible – no matter how the ME is behaving!
Concentrate on what you CAN DO NOW. Don’t compare yourself to when you were well. Focus on your quality of life NOW, whilst keeping a balance of rest and activity. Prioritise, and get help with the necessary personal and household tasks, so that all of your energy doesn’t go on merely surviving. PACE yourself, PRAISE yourself, be POSITIVE, PATIENT and PERSEVERE!