Life’s circumstances can unexpectedly change and reduce our expectations of where we thought we were going and a room with a view takes on significant and a new importance.

9 years ago I was thinking of running the London Marathon.  I had run half marathons in the US, done the Moon Walk in London, loved exercising and was fit and healthy.  I considered myself a work-aholic working all the hours I could.  I thought I had a relatively healthy diet – eating all the foods most of us see as a balanced diet, although I definitely was over-dosing on sugar and carbs.

With ease and without thought, I flung myself into re-designing my garden, digging over a large area, making a rock / pebble garden – about 15 bags of big pebbles lifted and emptied and arranged, dug my veggie patch, cut down small trees and chopped the 10 foot hedges down to a manageable 6 foot.  I did not quite knock down walls but did take out fitted shelving and cupboards, sanded the floors and redecorated. Meg my lab was walked every day for a good hour in the morning.  I worked.  I then met up with friends, did my shopping, did my housework.  I did not ever think about the amount of energy I was using for each activity – I did not need to.

Whether it is illness or a change of circumstance, our lives can overnight massively change.   Although my world has definitely become smaller this has not always been a bad thing.  I remember during the onset of ME, being bed-bound and gazing out of the window day by day – I was too ill to do anything else.  What I had glanced at was now my daily focus as the main vision in front of me.

Just outside the window, a telephone wire offered a convenient perch, leading close to trees – a playground for squirrels – and a bit of a view over my garden to the road.  I came to know a pair of doves who would regularly sit out on the branches, loved seeing the squirrels leaping across the branches, the changing seasons, different foliage and flowers.  For that time, that view was more than adequate.  What might have seemed dull to a healthy person with energy was plenty for somebody sick and not able to move from bed.  A bit like a child wondering why an adult is happy to sit and look at a view from a bench rather than racing around playing.

Having ME for me means that I do not need nor want as much.  A car trip to see the bluebells has extra pleasure, the absolute joy and excitement of a car trip out of Pangbourne.  I have so much more appreciation for the little changes in nature and most definitely do not take life for granted, as I used to.

You may notice that I use lots of paragraphs – not for grammatical purposes – but done like this for myself and for people living with  ME who read this.  We find it difficult to read large paragraphs as the “busy-iness” of the letters and words can overwhelm (how mad is that!).

Having our dogs at home with me is an absolute delight.   Ella – our flat coat retriever – and I – have a ball game for warmer days.  I can try and throw a tennis ball out of our bedroom window from the bed and when the back door is open (which is preferable), Ella can race down the stairs in high excitement and then find the ball which has bounced somewhere into the garden.  Often it does not make it out of the window which does mean ball marks on the window or frame around it.  The companionship of the dogs, their affection and daily humorous antics enrich my daily life.

My bucket list has massively changed – now not the London Marathon, trekking the lower heights of Everest and Nepal, or touring South America – but more the desire that we can one day get an adapted vehicle so we can get my off road mob scooter onto the beach or off to Scotland so I can get a taste of “freedom” again.  Sadly our current cars cannot take the off road mob scooter so a bit of patience is needed.

We now have a National Trust membership so I can now hope on a better day that we might make a visit somewhere – good weather permitting – taking at present the short distance shopping mob scooter.  I have not given up hope of being able to go for a walk, but to be realistic it is unlikely, so I am now happy that we could take the mobility scooters and just enjoy a bit of countryside, dogs with us and that feeling of the wind in the hair and hopefully one day visiting a remote part of Scotland!!

When I was working (with ME) looking after clients’ moving house, I really did have a much better appreciation of where a property was located, how far to walk to the shops, how many stairs – if any – the outlook from the windows, nearest transport links – buses to the town.  What might be a 5 minute walk to a healthy person could be impossible for a person with an illness possibly rendering them bed bound or just not possible to someone with a disability or other restriction.  A difference between dependence and independence meaning a fuller or not as full life.  My mature clients were often surprised at my immediate understanding and empathy of what they might be after.  I have frequently said that I do know how it feels to have the perhaps more limited physical energy and ability of a 90 year old (no offence meant) but the appearance of a 49 year old – it does worry me what I might not be able to do in 20 years time.

ME has most definitely reduced my expectations and also my desire in the type of activities I want to do.  A very special treat would be a trip to London – with me happy enough to be just gazing out of the window of the car – people and place watching.  An occasional trip out for a pub lunch.  Energy for an hour of gardening would be wonderful.  A good day when I feel I can try a new recipe (and it is successful).  Seeing family and friends.  Visiting Blenheim Palace last year was a real treat – having our hamper in a rose garden in the sunshine.  It is amazing how much I appreciate any of the above.

Not being able to work does of course bring financial restraints.  Yes I would love to win the lottery – although I do wonder how much it would help.  I think the private jet would be great and limitless money to try any new treatments.  But actually with no ME cure out there – apart from the “Daily Mail” 48 hour wonders – you cannot buy health.  Money helps in that I would love to pay a cleaner, to take the strain off my wonderful fiancé plus of course the private jet / first class travel would make travel a more pleasant experience.  But, I am surprised at my reduced perception on the importance of money.  However, I know we are better off than many.

What I know is very hard is that my ME has impacted horribly on those nearest and dearest to me.  I wish most of all that this was different.  I have had to let go of “guilt” rather than it consuming me, of not being able to contribute as an equal partner in sharing the day to day workload of living.  Modern living does of course have its benefits especially the internet in opening up the world and offering simple solutions such as online supermarket shopping.  But that is just a tiny part of the many activities that it takes to maintain a household.   But there are also the restrictions and limitations that extend via me to others.  I wish it were different.  One of the saddest aspects is not being able to see family and friends whom I would love to visit.

So I try and leave my guilt to one side and – whether from the sofa, hot tub or bed – thoroughly enjoy our rooms with their different views, needing and wanting a bit less than those 9 years ago.