My Story (Part 6)

During my admission to Professor Findley's Speciaist ME Unit, I have posted previously about how Amitryptilene dramatically helped correct my sleep disorder and helped control my pain; which gave me a teeny tiny spark of energy to help me work with his team, learning techniques that would help my body have a chance of self correcting.  I leant much about Energy Management but his integrated team also taught me these four additional crucial recovery techniques: Rest & Deep Relaxation techniques, Pacing, Graded Activity/Rest Programmes and Switching.  Until medical research finds a targetted, pharmacological pill/protocul, I believe these 4 techniques do offer hope for ME Patients.  I pray that one day a cure will be found, and soon, but until that time, I still believe that Professor Findley’s method is the best chance of improvement for patients as his method gives patients the best chance of their own terribly sick body beginning to 'self-correct’.  I am just thankful that I was lucky enough to be one of his patients.

So let’s break down Prof’s treatment protocol. 

Learning what true Rest meant was probably one of the most important lessons that I needed to learn. Severe ME had caused my nervous system to be uber revved up and my body to be ‘stuck’ in the stress response ‘fight or flight’ state almost permanently, my primary body systems were terribly affected: breathing, muscles/joints, blood circulation, special senses, digestion, whilst my badly affected brain was working overtime, struggling cognitively to work in a problem solving manner – utterly and completely exhausting.  My mitochondria were severely affected, so the tiny, scarce amounts of precious energy they produced were being used up instantly.  So, Prof’s team knew that they had to teach me a way to calm down my Sympathetic Nervous System if I were to have any chance of improvement.

I learnt that the term ‘Rest’ in relation to treatments for Severe ME really means ‘Deep Relaxation’.  Resting for ME Patients is not reading a book, watching TV, listening to the Radio or even quietly daydreaming, as it might have been before I got ill.  A period of Deep Relaxation, true rest, is a period of quiet time, lying down, when the Patient aims to reduce down all stimulation of their senses, thereby allowing the body to rest, begin to recover and start to self-correct.  Basically, the Patient needs to learn how to quieten the body and the brain - not easy, but as I have said vital to me escaping the prison of Very Severe ME. 

Indeed, when I was at my most severe, at home, bed-bound, light sensitive, in constant pain, feeling like I was in some kind of  toxic, brain fogged state, my central nervous system incredibly revved up, sleeping perhaps 3-4 hours a night if I was lucky, unable to do anything for myself, lying in my bed, trapped there, anxious, and terrified at what was happening to me for 20 hours a day, that time laying in bed was anything but restful…but when I was taught by Professor Findley’s team how to switch off my racing brain and calm down my Sympathetic Nervous System, well, the difference to my life and the rate at which I began to improve was nothing short of amazing.   I learnt 3 main ways to switch off: the revved up nervous system:

i)          Breathing Exercises

ii)         Listening to soft instrumental relaxation music

iii)        Following a guided relaxation technique.

I saw quickly that I needed to view these 30 minute Rest and Relaxation periods spread throughout my day in just the same way as I would Prescribed Medication, because for Severe M.E. Patients that is precisely what they are, a prescription for an effective treatment that will aid recovery.

To progress, I also had to learn to balance activity alongside rest to establish a consistent and sustainable level of daily activity that avoids relapses through over exertion – this is called Pacing.  Learning to pace really helped me start to take control of my condition and enabled me to effectively become an expert in managing my own recovery.  However whilst ‘Pacing Yourself’ when you are ill might sound a lot like common sense, that does not mean that it is easy.  I would say that it is the single most difficult thing that I had to learn during my illness; the discipline required is unimaginable, but it works.  

So as the weeks went by I learnt the basics, I then had to learn how to put them into practice.

Michael taught me that before a Patient can even attempt to pace themselves, they need to understand that three types of energy are involved in all their daily activities:

·                     i)         Physical Energy (eg lying, sitting, eating, standing, walking)

·                     ii)        Mental or Cognitive Energy (eg thinking, reading, TV, radio)

·                     iii)       Emotional (eg happy, sad, anxious, angry)

And some activities require all three types of energy eg talking to a close friend/relative that the Patient has been unable to see for several months – the physical energy required to actually talk…the mental energy required to concentrate and formulate sentences… and the emotional energy of seeing a loved one that the Patient has missed so very much.

Then there is the need to grade each activity into a low energy, a medium energy or a high energy activity.  For example, for a Severely affected M.E. Patient talking to their Carer for 2 minutes might be graded as a medium energy activity, but talking to medical specialist on a home visit for 2 minutes, whom they have never met before, well, that would probably be graded as a very high energy activity, because there would probably be a higher level of stress involved.

Another clever technique I learnt was that of Switching.  When I started to progress, I found that if I kept switching between different activities, ie using different parts of the brain and different muscle groups in my body, then I could actually do a little more over the course of a day.  To give you an idea of what an Activity/Rest Programme can look like, below is a copy of my Home Programme of September 2000, about 6 months after I had left Prof’s unit.    

Really hope you find this post useful.  Next time, I will have much to say about Graded Exercise and why medical professionals still prescribing GET for ME Patients, a regimen that clearly causes Severe ME Patients to deteriorate even more, is, in my humble opinion, nothing more than medical abuse.         

TIME	ACTIVITY	ENERGY GRADE (low/medium/high)
7.45-8am	Wake up and come to	Low
8-9.30am	Carer sort bedroom out, give me breakfast and 5 min chat. Feed self and take vitamins (all lying down on bed) Listen Radio News, stretches lying down. Walk 8 paces loo, wash at sink sitting on perch stool.	Medium Medium High
9.30-10am	R E S T
10-11am	Get dressed into tracksuit bottoms and zip hoody, sitting on bed and put moisturizer on face. Listen Classical Music (lying down on bed) Sit out for 5 mins in bedroom chair,  high backed, to write (4 paces to chair, hand on wall as walk to maintain balance)	High Low Medium
11-11.30am	R E S T
11.30-12.30	Walk 8 paces loo, and then another 4 paces into spare bedroom overlooking back garden. Flick through easy (mainly pictures) magazines (5 minutes) lying on day bed. Carer brings lunch, 5 min chat; can feed self lying on day bed.	Medium Low Medium
12.30-1pm	R E S T
1-2pm	Walk 4 paces loo, walk back over wooden step block (starting to re train muscles in preparation for tackling stairs) Ly on front on day bed, listen Classic FM Ly on back, read magazine or 5 min telephone call or listen radio.	High Low Medium
2-2.30pm	R E S T
2.30-3.30pm	Therapist/Visitor or telephone call (lying on bed) Light music lying Afternoon snack, feed self lying	High Low Low
3.30-4pm	R E S T
4-5.30pm	Walk loo, then sit in high backed chair 5 mins. My daily long Walk: 100 paces between landing/bedrooms. Lying, watch TV 10 minutes	Medium High Medium
5.15-5.45pm	R E S T
5.45-6.45pm	Walk loo, walk back over wooden step block Carer brings, Dinner, feed self lying quiet Magazine read Chat 10 minutes to Carer or telephone call 5 minutes	Medium Medium Medium High
6.45-7.15pm	R E S T
7.15-8.30pm	Walk 8 paces loo, wash at sink, sitting on perch stool Listen classic FM, lying Supper and 5 minute chat with Carer, or back massage from Carer. Listen Classic FM, lying Brush Teeth (using bowl brought by Carer at Dinner), undress sitting up on bed.	High Low High Low Medium
8,30-9pm	WIND DOWN RELAXATION TAPE
9pm	Sleep