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!!