I have made huge progress since having ME with acceptance.  For me acceptance brings peace of mind.  Yes that will of course change within minutes, hours and days, but today I have a good degree of acceptance.

Acceptance keeps me calmer, more satisfied, relaxed and able to face challenges with a better attitude.  It also has brought me enjoyment not only of good events and occasions but also of the much smaller things in life.  Importantly learning to live with things as they are helps enormously with the illness, bad news, tough situations and the more negative side that we all face in life.

During the onset of ME I did not have much acceptance as I had no clue what was going on, felt horrendous and was fighting on a strange journey.  But I did have minutes where I found a calm space.  For instance whilst during the onset I was in my cute little cottage in Upper Basildon which was set in the countryside, a tranquil location, views over fields, and an array of birds, animals, trees and plants.  A pair of doves used to sit on a wire just outside the bedroom window.  When I could not move out of bed but also could not sleep I would lie looking and listening at the doves as they sat together “cooing”.  I appreciated their lives, loved seeing them day by day, a feeling of familiarity and some companionship.  They brought me a sense of calmness and enjoyment.

Likewise in our current home we have a beautiful garden with large trees down one side of the garden and house.  The changing seasons brings different views and activity over the year with a neighbouring field often hosting, listening as they quietly nibble on the grass plus the occasional fox stalking and waiting.

I used to be charging through life, always what must I be doing, planning, organising and undertaking activities.  Of course age does also change us but changes in my inner self since working through the past 8 plus ME filled years has also brought out a much more tranquil side of me.

I have changed in not needing the same activities such as social activity, shopping and outdoor pursuits.  Quality has definitely taken priority over quantity.  However, it is important to point out that this is not all by choice but an enforced regime with massive limitations in my ability to do but also on what I can take.

I have said before about any type of activity i.e. physical, mental and emotional eats away on a daily basis at my little or non-existent allowance of “energy”.  I put “energy” in quotes as it is not probably in a league that a healthy person experiences.  Having accepted the enforced limitations does not mean that I do not feel I am missing out.  I do feel that, to a horrendous degree at times, but the acceptance part of me more and more helps in learning to not be envious or jealous.  Negative emotions (plus positive) use energy, so it is just as well that I have learnt to cope.

I have over the years of ME what I call my levels of acceptance with consciousness of periods of time when I realise what I am going or have gone through. Obviously there is the onset, not knowing and then accepting I am ill – the onset phase which is frightening in itself, battling trying to work, others say you will get better. Sadly there is a tough process accepting that this it and that you might not get better and that there is no cure.  But this is not giving up or losing hope.

Losing a job, not producing an income plus the social aspect of work and being part of one particular part of society.  There are sections within society; a part that wonders why is she in a wheelchair or on the mobility scooter?  Bet she is not disabled as I step up out of a car.  Wondering why I am not carrying a heavy bag or doing something for someone who looks worse off than I am.

Confusion and understanding plus others reactions to what is happening to me (and to them indirectly) including endless articles of daily mail cures sent by well-meaning friends and family. Trying some of the cures, wasting money and feeling hopeless. Friends, relatives – some understanding, some not. Not being able to socialize, exercise. Putting on weight (for me). Loss of income, how to pay mortgage, how to pay bills. Renting out home, moving in with mum and my now fiancé alternating between the 2. Wondering what the future holds. Realization that now 2 years have passed. A day feeling bit better, then a few days, then wham back and feeling grim. Then a bit better and the cycle repeats, boom and bust … Sort of stabilization and listening to body.

Counselling to help grief, depression and finding ways of coping. Trying every healthy eating regime, medically based or other. Working out ways to help body and mind. Lose of friends, hearing about others going to a concert or for walks and feeling left out, sad, angry, lots of tears.

Telling family and friends to stop saying I will get better. I am at a sort of ok level … Not good, occasional ok day, but years 3 to 5 getting better at boom and bust and sort of moving forward at last, but then kicked down on occasion.

Setting small even tiny goals. Dust the lounge. Next day wipe down the shower room, but stop after shower cubicle proves too much. The act of doing totally shifts onto my wonderful fiancé. He does want me!!! Despite me having no physical energy, crying, trying, failing, tiny achievements. Working an easy Saturday job. Having to leave early and understanding boss. Doing some work from home. Tiring but enjoyable. A bit of money and so able to contribute.

A friend says we have nothing in common and “dumps” me after a friendship of over 20 years. Another fall out with another friend who starts to cut me out and is then not understanding to say the least. Accepting this is my new life. Most friends and family supportive, knowing I will disappear from social events to sleep and be ill. People not always understanding as they just don’t realize that I really cannot join in, but you don’t look ill. Dreading a family occasion out of town. Put together emergency pack of drugs, ear plugs, eye mask, light blanket and pillow so always prepared.

Loving just being at home. Realization and learning just to be. Mindfulness … Slowing down …. Eating heartily … Losing a bit of weight … Working a bit more. Ups and downs. Good and bad. Occasionally doing something stupid and relapse. 7 years in … I am still learning but am moving forward. I have a new and different life. I have almost learned to be still, to relax, listen to the birds. Appreciation of the life outside the window, simpler things are good…

The last year has brought a significant relapse – that maybe on-going – onto a lower level.  I hope the onward progression of ME stops soon.

Sadly I have lost the ability to work again and having to find again the second lot of strength to work through this, once again giving up having a salary, social interaction through work, a daily routine of putting on a “uniform” for the outside world.

Giving up my sexy car, but then finding actually how much I love my Surge named car with its ramp.  It does surge and it has space!  It is not rapid, but nor am I.  It is good.

The happiness in finding new friends, a new way of life.  Learning more about food and eating.  Losing weight – but far more for health than vanity!  The looking slimmer side is just a huge bonus.

The joy of my mobility scooters.  I can again go shopping even if for only small amounts of time, visit a National Trust property, and be part of a walk with others.  The “off road” mobility scooter taking me 3 fields beside the river in Pangbourne – a place I had not visited for over 8 years.  The feeling of freedom and the wind in my hair … yes I am smiling.

As they say it is the journey and not the destination.  I will never give up hope but this is a new life.  Let it be as it is.