Hope taken away for now …

Pulling myself together after the horrendous news that the Norwegian final clinical trial of the drug rituxamib proved unsuccessful.

The previous clinical trial with rituxamib which had shown great results had been a huge beacon of light and hope for all suffering with ME. As the actual clinical trial had recently ended we had not expected news until the spring of 2018 so devastated to hear yesterday the bad news from Drs Fluge and Mella. But I am also grateful that they have let us know now as many of us were making plans on whether to travel to Norway for private treatment and hopeful of a clinical trial with rituxamib in the U.K. expecting that treatment would hopefully be available within a few years on the NHS. Better to know now and regroup.

Although there are other clinical trials taking place with another chemotherapy drug in Norway hope seems to have been pushed away into the far off future.

I have lost over a third of my adult life to ME and I had hoped to regain some of my 50s life even it was temporary remission … just a walk beside the river would be heavenly. Sadly I think I will be much older before there is any treatment.

There is real concern among the ME community for those in particular who are severely affected and coping on their own. So please if you know or hear of someone then please reach out to them as they need all the support they can give.

I am determined to now focus on the excellent research and awareness snowball that is happening with ME. The film Unrest is raising people’s awareness of what life with ME really means. Jennifer Brea has done an amazing job of producing a raw, disturbing yet powerful film showing the challenges of life with ME not only for the person with ME but showing life for the families and friends.

So for now a bit of reflection and acceptance of the new no rituxamib reality. I always am thankful for the 40 years of health and achievement that I had which is far more than thousands of children and young people get with ME. Plus the sun is coming out on a chilly but bright autumn day. Refocus and move forward, one small step at a time.

CELEBRATING LESS IS MORE

My new reality is living with grim sensations day and night, realising that it is possible that there will not be any relief. Medication helps to mask some of the symptoms but remembering how absolutely unbearable it was before this new medication makes me realise that this is a better place to be. So now I must learn to celebrate this situation. Doing stuff will make it worse and can put me on a lower level of capability permanently so I’m learning acceptance of where I am. It is not a bad place to be and could be much worse. Unfortunately this does mean less outings and fun but making the most of the times I can get out. Further learning that moving a bit less and not being able to even doing 5 minutes of weeding instead of 10 minutes is just fine.

Life has become a fine balance of rest and minimal activity within the parameters of my current ME level. I was told this week the unwelcome news by my ME consultant that the deterioration can happen to women with ME of my age. Fab how the news does not improve with not a huge amount of good news on the horizon.

I was surprised this week by my ME consultant’s barely contained excitement that the new medication works for a while before having to up the dose again and again. Plus his enthusiasm that I can work through the “medication family” of the drug that works (for a while), fooling my body for a bit. On reflection I can see that I also need to be happy with these positives. In the past I have looked to totally getting rid of pain and other symptoms, but the world is not perfect.

Being healthy is something that I always took for granted. I have now lived for more than a third of my adult life with ME. If we get sick, we assume that we have a chance of getting better.  I did not expect to become disabled and never expected to become sick with a chronic illness at the age of 41. It’s a wee bit unfair as well that it’s an illness that is only just now starting to be researched but with no cure, although there is the possibility of a temporary lessening of symptoms through powerful drugs currently going through clinical trials.

 

 

Aggressive resting for ME

I have been living with progressively more severe ME for over 10 years. I believe that I’ve been through cycles of acceptance which I see as similar to those of grief but including sadness, anger, fighting, peace and acceptance on different levels.

However I do not think that I’ve lived as though I have severe ME but have still tried to achieve what a person without ME can do. suffering as a result the reality of horrible disabling symptoms.

I have decided over recent months that I need to get out of this cycle of thinking I can do more than I can and suffering the consequences in a ok mode or bust cycle. I lost the boom days where I was ok or seemingly ME free for a couple of hours maybe a year or so ago.

This new phase of “not trying” is part of what many people go through with ME and is contrary to what I think is our human nature in trying harder, pushing ourselves, always seeing how much more we can achieve. I’ve often said that “even being animated makes my brand of ME worse”. This is true in that whatever energy I use emotionally (positive or negative), physically or mentally makes me sicker.

My current heart rate is a factual illustration in that even lying typing on the sofa on my iPad my heart rate is over 110 bpm and I only managed to get out of bed an hour ago and that was a forced move pushing my exhausted body. Since before Christmas I’ve seen my heart rate soar whilst preparing meals to freeze, wrapping presents and even doing online shopping raising my sitting heart rate often for long periods of time up and around 150 bpm.

So I’m entering a new phase whereby I must consistently reduce my heart rate. Each of us has an anaerobic threshold. There is a formula for people with ME depending on its severity. Using this approximate formula my anaerobic threshold seems to be staying below 100 bpm.

Going above this rate seems to make me immediately sicker and causing what is known as post exertional malaise whereby I suffer over days and sometimes weeks following over exertion whether carrying too heavy bags, walking too far or just standing chatting for too long.. In the US the Workwell Foundation do specific anaerobic threshold testing over two days taking bloods and precisely measuring VO2 maximum for people living with ME in order to get cover on their health insurance. However as this testing involves several minutes of sustained exercise on stationary bikes etc. it is only suitable for people with moderate or mild ME.

One of the bitter truths of ME is that for many of us we can decrease our ability and permanently increase our disability by overdoing it. In the UK the official NICE guidelines still advocate Graded Exercise Therapy (GET) and Cognitive Behavioural Therapy (CBT) as the 2 only treatment options for ME. The GET “treatment” remains as there is still a misguided (luckily ever decreasing) circle of people who believe ME is all in the mind and people are just lazy.

The GET treatment has permanently disabled many people with ME who were literally forced to walk, run and exercise beyond their capacity rendering many from being able to walk and function to being sofa or permanently bed bound. Rest, rest and more rest is the absolute starting point for anybody suffering from ME. If it is not ME then weeks or months of inactivity can quickly be remedied when the person is better. Many people get post viral or chronic fatigue following an illness which they recover from. A bit of deconditioning is a much better option in case the person has ME rather than permanently disabling them.

It took me 9.5 years to been see by a London specialist ME unit at University College London Hospital (UCLH) This was after being bounced around different hospitals for various tests as Berkshire has no specific ME consultants. I spotted a leaflet whilst undergoing autonomic tests for the ME service at UCLH and received my request for a referral. I cried after my first visit as at last I was seen by people that understood ME and could offer realistic and helpful treatment.

It is due to this care that has led me to this next stage of my ME journey where I will hopefully find my baseline. My baseline of activity should illustrate how much or how little I can do without making my ME worse. For some people it is literally being alive and existing. Frequently these people maybe in a dark and quiet room, permanently bed bound and some being tube fed. People have deteriorated to this level and have subsequently died, others remain at this level whilst others improve to a higher level of functioning.

As yet I do not know how much or how little I can do. I certainly have lost the episodes where I used to have maybe 2-3 hours where I had minimal ME and felt more normal. Normal for me is now permanent symptoms of ME which can be uncomfortable, painful, agony, debilitating and tolerable.

I want to reach and maintain a level which is tolerable without the crashes.

As currently just sitting up puts my heart rate up and the ME rapidly moves away from being tolerable, it is not going to be straightforward. But I am lucky in not having dependents and on the most part I can get away with minimal daily activity. However we all experience uncontrollable and unpredictable events that take up huge amounts of energy, amplified by having ME.

So this will be a daily “lack of effort” towards what is known as “aggressive resting”. Watching television does not rejuvenate me as I have ME. Actually sadly nothing rejuvenates me. But due to brain inflammation with accompanying horrendous head pain and discomfort over the past year has helped me find non-activities for quietening and calming the brain and body. Some were already familiar and may have been something I did on occasion such as mindfulness meditation. Others I have found, had recommended or have sought out.

I started to incorporate these elements a few weeks ago with a view to starting this new path properly on 1 January 2017.

Autogenic relaxation, mindfulness, some types of classical music, colouring, minimising internet activity within time limits, listening to shows such as Desert Island Discs are amongst some of my new activities all about slowing down the brain and body with the aim of resting, hopefully recuperating and possibly eventually adding rather than depleting energy. I intend to talk less which has decreased anyway as I’ve found telephone conversations often exhausting, text more and use more email communication.

This will be a huge shift in focus and there will be times it won’t work but at least I have intention and focus.

I wish I was more articulate as it is so so difficult to explain ME without having lived it. What I am grateful for is the understanding of those closest to me and their patience with me and the ME. I hope to give occasional updates!!

ME Day 2016

It’s ME Day again. Even after now 10 years, yes a decade of being ill I’m still learning about living daily with ME. Yesterday was a day when I had to sleep literally for 90% of the day…

Source: ME Day 2016

Chronic or not fatigue

Having ME is a bit like a not so “lucky daily dip” every single day. The dip being in not knowing which symptoms are going to emerge for that day or over several days.

Generally symptoms come and go within hours or over a few days, but for me generally not for longer periods of time, although at the end of last year I had a 10 day bout of brain fog and laboured breathing.

The symptom that most people are familiar with is fatigue with this being one of the myriad of symptoms but for a while ME was known as Chronic Fatigue Syndrome. However, ME hosts a huge range of different symptoms from brain fog, muscle pain, sensory distortions and overload from noise and light to even seeing activity being too much, flu like symptoms, brain pain / ache, slurring, weakness, etc. etc.

Along with muscle pain my early memories when I became unbearably ill with ME now 10 years ago are of fatigue.

When I try to explain fatigue people think it is a bit like a few late nights, and feel they can sympathize with that. However, this is an all encompassing and totally overwhelming fatigue that you know you cannot fight.  If you do fight it gets worse.  “Respect my fatigue” is a much better attitude to take.  This is not giving in, but acceptance of a reality.

I think fatigue and muscle weakness can and do overlap one another. Two weeks ago I had several days when my muscles were extraordinarily weak.  Sitting up was too exhausting so I had to stay in bed or use pillows and cushions on the sofa.

Overwhelming fatigue makes your limbs feel like lead, as though you are wading through thick drying cement.

There can be cause and effect in that lifting a heavy object, lifting shopping in from the car or shifting a piece of furniture all can easily be cause with guaranteed effect. The effect and consequences can be immediate or within the next few days.

At present I am fatigued but not to such a state that I cannot do anything. My lungs feel heavy and if in bed I cannot lie on my side but only my back as these makes it feel easier to breathe.  An evening or lunch time of chatter can exhaust my lung muscles.

I was once at the river when Chris was away with the dogs and the power chair needed a shove with me stupidly ending up in some mud. The shove to get it out hit me immediately, sort of similar to being winded but with it not going away.

Fatigue is usually throughout my body. I frequently wake up with it and can feel sort of surges of fatigue in my blood.  If it is a good fatigue day then I will be able to just keep sleeping, good in that I can make myself feel better by escaping into sleep.  On a bad fatigue day my body feels wired but totally exhausted.  That is grim as there is no escape through sleep.  Rest, rest and yet more rest is the only solution as pushing my body just makes it worse.

“Emergency” adrenaline is one of the few things that may overcome the fatigue temporarily. Last week I woke up at about 0700 to our house alarm going off.  My mind was trying to figure out what to do i.e. if there were intruders then were they in the garage or in the house and maybe it was best to just call the police, but my brain also fairly quickly realised that it was not the house alarm but a smoke detector actually set off my shower steam via our lodger.

This was an occasion that adrenaline kicked in with reacting to the alarm appropriately and then needing to stop the noise once I knew it was safe. Backlash guaranteed a few days later.

Exertion for someone with ME includes mental, physical and emotional use of the body’s energy. As I wake up each day with fatigue it is a matter of working out what sort of day it is.  Approximately 2-4 days a week I am bed / sofa bound where I have little energy and need to rest.

A good day is when I have 2-3 hours of energy, but with limits. I can on occasion meet a friend for lunch but know that after 2 hours I need to get back home to rest.  If I do not pay attention to the “Cinderella” deadline then the payback will be worse.

Not all bad days are predictable. The ME fluctuates within itself.  I can never work out if this is good or not.  With symptoms such as severe nausea and muscle pain, it is a relief to have variety, but obviously mild symptoms you can ignore would be much much better.  So I try to stay positive and think a bit more of a pot luck attitude with the excitement of not knowing what will happen next!

Ligthning strike or maybe not …

The article at the end is appropriate and a great help for those living with ME.

The Lightning Process (LP) is frequently recommended to me with questions on have I tried it and how it has helped other sick people.  Esther Ranzen loved it for many many years declaring in the media how it cured her daughter of ME.  Recently Esther Ranzens daughter again was in the news as they now find she has Lyme disease and is still not well …

When I first heard about LP I was interested and read up as much as I could.  Anybody who is seriously ill is desperate to find a cure or something that will provide relief.  I realised that several ME “miracle” cures seemed to be this LP / NLP reprogramming the mind … So rather than having it done to me I trained to understand what it was and how to do (N)LP, mostly distance learning but then through a series of workshops.

Temporarily I realised it did reprogramme my brain into believing something that was not true.  But reality kicked in and I relapsed each and every time.  Luckily I did not do too much I.e. no running, but relapsed badly.  Physical / mental / emotional exertion and / or sensory overload just makes somebody with ME sicker.  People with ME strive not to strive.

Over time I also had then read ME forums discussing LP with some terrifying stories of people becoming totally bed bound having believed they could do more than they could.  Many people who had LP done to them were told that if it did not work for them then they were not doing it correctly and many were also told not to discuss LP away from the course.

ME is a physical illness which through its nature also becomes a mental challenge in coping.

One problem is that there is no formal diagnosis such as a blood test.  Post mortems have found clear evidence of differences in a person who had ME i.e. lesions on the spine, evidence of problems through muscle biopsies and in the last year tests show up differences, changes in the brain, spinal fluid, basic molecular differences, some similar to cancer and other illnesses but unique differences only attributed to ME, so we are moving forward toward a recognised medical diagnosis. Once we have a formal diagnosis methodology that this is a physical illness it will be an enormous step forward for ME.

Then the process of a cure hopefully can be worked towards.  Here is the article I am referring to.   http://www.positivehealth.com/article/cfs-me/me-cfs-ethical-and-unethical-uses-of-nlp

Acceptance

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.

Acceptance

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.

Respect and ice cream

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.

Big Sleep gets people talking about ME

At many times I wondered whether I had the energy to really organise The Big Sleep but I am so glad that it happened and have been delighted by the support and interest shown.

My motivation has and is two-fold, firstly for children and young people with ME.  Even today I heard about another 18 year old who is local with ME and fibromyalgia and lupus!  Apparently not severe but nevertheless I do keep wondering why so many young people are ill.

Second part of my motivation is awareness as until I was ill over 8 years ago, I did not know have a clue what ME really was – I did not know anybody with it, but I had heard of yuppie flu.  So to get people talking was great.  I put together a newsletter – which you can see below.  I can also send on to anybody who would like it – do email me at sally31@hotmail.com if you would like a copy.

I also came to find several people locally who have ME – 1 of whom I had met but had no idea – nothing like a deceiving invisible illness and the husband of a lady I know locally.  I also came to know of others with grandchildren, children, wives etc. also with ME.  The grandchildren made me particularly sad with the story of how few lessons they can get to at school and after greeting their grandfather how the children soon are laid out ill and exhausted often only 30 minutes after seeing their granddad.  Extremely sad.

The evening of Monday 12th May was the evening it was held.  People gathered at The Cross Keys in Pangbourne, a number dressed up for the Best Pyjama / (decent) Sleepwear competition.  It was a close call by the clap-a-thon between the tramp style string vest with pyjama bottom v the onesy giraffe … possibly with some bias my fiancé Chris won with his tramp style string vest and pyjama bottom.  I can confirm that he did not take the much coveted Lamborghini key ring but reclaimed a raffle prize of an ipod mini speaker which I donated – I did not know he had lost the other one I gave him several years back!

The evening continued with much fun and chatter, scrummy curry and ending up with most appropriately cocoa for some before finishing the event.

My respect for anyone who organises any charity event has increased enormously.  Maybe because of the ME but I had forgotten how much energy it takes plus I cannot multi-task anymore!  Luckily I am relatively organised and utilised Patrick Williams photocopier which I was kindly allowed to use and pulled it together – Catrina doing a large number of leaflet drops for me!!

The Pangbourne shops and businesses were amazing and generous with their raffle prizes including Beauty Box, Green Parlour, Greens, Ninos, Lamborghini, The Rhubarb Tree, Adam and Eve, Forresters, Finn Hair, Ladbrokes, Strutt & Parker, W.H. Smith, Collins, my Mum, Catrina and Lars Jaeger, Jill and Phil Hawkins.  A huge thanks also to all the donations via my JustGiving page – you will see the many donations received on line plus additional money taken on the night.

I found it a wee bit stressful organising but my mobility scooters came up trumps – with the Invest in ME balloons trailing in the wind I went campaigning over a few days to promote.  Most of Pangbourne shops and businesses were most welcoming.  Family and friends gave fantastic and much-needed support, both practically and emotionally.

Finally The Cross Keys hosted the event, made a fab curry, and by this donated £5.00 for every ticket sold.  The pub was a great venue for the event.

All the money went to the charity “Invest in ME”.   “Invest in ME (IiME) which was set up with the objectives of making a change in how ME is perceived and treated in the media, by health departments and by healthcare professionals. We aim to do this by identifying the three key areas to concentrate our efforts on – funding for biomedical research, education and lobbying. Invest in ME aims to collaborate and coordinate events and activities in these areas in order to provide the focus and funding to allow biomedical research to be carried out.”  http://www.investinme.org/about.htm

The Newbury Weekly News published an article on page 12 of the Thursday May 15th edition and the Reading Post are publishing next week.  Both newspapers are also hoping to put the article online.

Right time for yet another rest as I am still recovering from the before, during and after.  But that is ok.  I am extremely glad that I organised it and do help it has done just a little in helping others.  Thank you.