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.

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.

It seems ages and is ages since I have updated my blog.  No excuses but life.

I am not sure if the extra hot weather is having an effect or if I am going through yet another bad patch.  Supposedly I have a 2 hour window each day where I can do something although not too much, but only on a good day.

It is frustrating but I am improving my discipline on only booking a couple of things a week – maybe going out to a pub or long telephone conversations, taking the mobility scooter to the river for a short walk with the dogs or a trip to the supermarket.

Any bigger events need more planning with rest(s) before, during and after.  I have also noticed that whatever I decide to do, it normally is putting me into negative ME.  Maddening – well yes just a bit.  I could frequently scream in frustration.  I posted on Facebook today that if there is a heaven then I hope it is free of ME.  I always want to maintain hope for one day.

The 2 hours of gardening with breaks last weekend was not a good idea translating into 2.5 days of total bed rest and then another event unexpectedly yesterday hit me this morning despite resting.  Although in bed sleeping most of the day I still feel exhausted and cannot sit up properly as my muscles are just too week.

Although I am totally bored of ME (let alone anyone else) with the fluctuations which can be over a day or even hours I am not easily able to totally forget about it.  It is there as a constant companion, annoying the majority of time with only the occasional brief respite.  When I deal with any crisis or undertake an activity that I have to do, adrenaline does kick in and I can – on some occasions – put the ME onto a “back burner” but once I am through the event (which must not be too long) then wham the ME certainly lets me know how much I have done and how much it affected me. 

As I sit and type I am extremely tired, not able to sit up properly.  I am tired but wired i.e. in this instance I cannot sleep but would love to.  I am hopeful that this flare up will diminish by tomorrow with a gentle evening and early night.  It is horrible as my lungs feel heavy and congested, numbness and tingling over most of my body (not unpleasant just weird), dizzy, bit breathless, headachy and incredibly weak.

Now I have my food sorted out I think it is time to look at supplements.  I have been doing an ongoing analysis of potential deficiencies within ME in general and identifying what other people living with ME have taken and their results.  I will double check what tests I can get via my doctor but then look at getting private tests via recommendations of others. 

Money is always a factor with getting testing and prioritising what is worth taking.  Obviously identifying if there is a deficiency is worthwhile before paying for a variety of supplements.  I worked out that it would cost be about £200.00 per month if I were to take most, but not all, the supplements recommended across various ME websites! 

I have been via food taking what I can naturally to boost potential deficiencies.  What is interesting is that being so sedentary means that my food intake does not need to be much at all.  Luckily I have shifted a little bit of weight which I had put on since having ME.  I used to give in to whatever food I felt like eating – within reason – but also had identified that really I was eating an incredible large amount to what my body actually needed.  In the past I would exercise not only for fitness but to use up calories.  However, I think so many of us just eat too much and actually we do not need a huge amount of food each day.  Obviously if someone is active maybe doing physical work or sport, then they need to fuel their body accordingly.

 What I have done is to really home in on how little (rather than how much) I actually need to eat and massively cutting down portion size.  As I need to cover a range of ideal foods giving me the nutrition my body needs, this might mean I divide up over the day the fish, meat, veggies, fruit, nuts etc. into meals whereas before I would just eat a much larger amount of various foods in one sitting.  Today has meant a small amount of fresh fruit – from frozen, where I divide food into small portions – for breakfast, lamb and beetroot for lunch and there will be green veggies for an early supper. 

I keep an eye on my overview sheet to ensure I work through the list of foods over a week.  I also try not to obsess over this i.e. if I crave a bit more fruit one week – knowing the urge may shift onto greens.  It seems to balance out over a week or so.

What I also am doing is to buy quality produce so the meat is grass fed and good quality veggies that I need to fuel my body.  Happily the nutritionally dense foods are also scrummy!!!

Although there is plenty of good news there are no miracles as yet!  The nutrient dense foods are 90% Paleo eating with my 10% allowance for deviation.  Admittedly having just made my first batch of ice cream I have been having the odd small spoonful with the hot weather we are experiencing but all in the aid of cooling down.

I am extremely happy with the nutritionally eating that I am following.  It is not difficult, but does take thought and planning.  Happily a friend also reminded me about utilising hard boiled eggs as emergency snacks.  Having something instantly available can be helpful for the bad days when I can really not move much at all, or when I just keep sleeping. 

My fondness for guacamole has increased and is another easy snack to put together.  I wish that I could report that the ME has improved with the eating regime.  Although it has not improved I do feel better (I think) and also know that I am looking after my body.  It is also important for planning to take into account the 2-3 bad days that I can have – more or less of – over a week.  The freezer has been invaluable and a resource I have really utilised – freezing small portions of soup, freezing individual portions of meat, fish, veggies and fruit.  It works for me.

I also firmly believe that even if a body does not display ill health it is critical to still fuel it with nutrients that it needs.  I think we have become a little complacent with our health.  Every day people consume food that may seem healthy or is easily cooked, convenient or is part of the modern foods that we have been told or believe are ok, but recent news has certainly put a twist on food.  News now reports that low fat is bad, sugar is bad and that fat is bad.

However, I have given up on media advice and prefer to go back to basics – of nothing processed, seasonal and local plus nutritionally dense foods.  I also am against that a little of everything or in moderation is fine – my body has specific needs and I need to address this.  Sugar is not fine, nor are processed foods.  Also we all have different ideas of what moderation is … whether fish and chips take away, microwave ping meal, shop bought pie and pre-prepared veggies, sandwich at lunch time etc. etc. 

Whether from home made bone broth, veggies from the garden and meat from the local butcher I firmly feel we need to go back to our past when food was from scratch.  This does not have to be difficult or time consuming.  Yes it takes some thought and I utilise batch cooking and the freezer. 

However, I am Miss Goody today so just ignore me with my ranting’s.

I feel sad and more cut off from other people and the world in general as time goes on.  I cannot believe how much healthy people do within their day.  After over 8 years heading into my 9^th year of ME – I have started to forget just what real energy and a normal body feels like.  I probably also plan a great deal less as I know I just cannot do it and I do have fear of doing stuff.  I feel this is particularly hard on Chris who still has lots of energy and is of course normal.  I feel I must encourage him more to do things without me so at least one of us is living life to the full.  I am living my particular life to the full – but it is just a great deal less than others.

One part of the fear is that ME can be progressive with obviously a terminal result.  That fear gives me a reality check if I start to worry about the smaller things in life, but also reminds me that I do not want to relapse onto a lower level of ability.  There are too many reports of people with ME going permanently downhill after overdoing it.

There is a school of thought that a person can go through the pain and symptoms just ignoring them.  I wish it were that easy, but it is not.  If I ignore the warning symptoms I just get sicker more quickly and that can be in minutes, hours or more rarely over days.  ME demands a huge amount of respect in listening to what it is saying.

My current flare up is the result of 2 hours gardening last weekend.  I was careful and divided up the 2 hours with rest breaks.  I also was only weeding using a low stool so I could be sitting which does help.  But I think I should have only done 30 minutes total and so have payback time.

It did feel good however to achieve what I did with the relatively small flower bed free of weeds and looking good.  But it is difficult to know if it is worth the price.  I have had to postpone seeing a friend today.  I had other plans for this week which have been shelved – a little frustrating to say the least.

The best bit of this week is when I have been able to sleep properly and the odd bit of chocolate Baileys, banana and rum home-made ice cream.  Sleep brings reprieve and is a healing time, but not this week recharging visibly although I think it must be underneath it all.  I have used up my ability to sleep yesterday, frustrating as I need it but there has been too much pain.  This then translated into horrendous nausea and pain over my body including noise sensitivity where any noise was agony.

To help the mind aspect I am continuing to practice mindfulness meditation which brings a lovely sense of calmness plus helps me to relax.  But I can only do this when I feel reasonably ok, but I do feel that to keep practicing does help occasionally to switch off and to remain calm.  It does also help with the acceptance side and living in the moment. 

An ongoing and positive aspect is enjoying our home and garden.  Every day I continue to feel lucky in where we live, our gorgeous home and appreciation of the garden especially during the warmer summer months and good weather we are having. 

Life could be worse.