My Story (Part 5)

I was incredibly lucky to be admitted to Professor Findley's Specialist NHS ME Unit in Romford and I learnt so much during my 6 week admission.  It makes me furious knowing that Prof's unit, the very unit that helped me so much, the unit that could help so many more desperately ill patients, has been shut down due to lack of funding.  So I feel duty bound to try to share what I learnt there from Professor Findley and his team, a team who worked with Severe ME Patients, day in, day out.    First up, I started to understand what had happened to me, which was empowering and stress relieving in equal measure.  Whoever said ignorance is bliss needs their head examined. I learnt that Professor Findley graded his ME patients into 1 of 5 categories, with Grade 1 being classed as Mild and Grade 5 categorised as Very Severe.  I was a Grade 5, at the most severe end of the spectrum.  No surprise there.  I just wish all medical professionals would use this Grading Categorisation.  There is never anything Mild or Moderate about ME.   With My OT, Michael’s help, I also started to gain a basic understanding of how Very Severe ME had actually taken hold of me.  Most ME cases seem to be triggered by a viral infection such as flu, glandular fever, Epstein Barr, or meningitis at a time when the person is under immense stress; my recurrent bout of tonsillitis, treated again with antibiotics, coupled with a stressful job fitted into this causal picture perfectly.  It would appear that after the initial viral attack on my body, and being pushed too far, too soon, by a (supposed ME specialist) NHS Psychologist, who encouraged me to attempt a return to work park time which lead to my collapse...my immune system had gone into some kind of overdrive, firing off excessive and toxic levels of cytokines (killer cells), with genes in my white blood cells – a key part of the immune system – being switched on and off in abnormal fashion leading to dysfunction in my Hypothalamic-Pituitary-Adrenal axis (HPA), part of my Central Nervous System.  It was highly likely that there was a genetic predisposition as well, perhaps linked to the gene causing Gilberts Syndrome, a liver dysfunction, which I, like so many of Prof’s ME patients, had. The Hypothalamus is the major gland of the body, governing practically every system, organ and function so I started to see how the effects of its dysfunction had affected me so severely.  My Sympathetic Nervous System had become predominant nearly all the time, meaning I had basically got stuck in the stressful ‘fight or flight’ state almost permanently; now everyone knows that being like this is exhausting and physically disabling even if just for a couple of hours  – in my case, I had pretty much been in that state for over 2 years.  Dear God.  Add in the fact that my Mitochondria (the tiny structures that generate energy within cells found mostly in muscles) were no longer functioning normally plus lactic acid overload and I started to realise why I had been crippled by debilitating and disabling fatigue.  I started to see Severe ME as a kind of major ‘power cut’ to my body and brain which had basically left me paralysed from within.  At last I began to understand.   Taking in the genetic predisposition factor also allowed me to stop blaming myself for being responsible for me falling ill.  I honestly believed that it was how hard I had worked that had caused this; Prof and his team explained to me that nothing could be more untrue. Once the team had carried out their full individual assessment of me and I had a week of 9 hours of refreshing sleep nightly under my belt, due to Prof's prescribed liquid Amitryptilene, it was time to get stuck in to working with the wider team, to learn how to get my body’s power turned back on.  Whilst Prof could not offer me a magic cure-all-pill, he and his team had developed several therapeutic strategies that help Severe ME patients manage our wide ranging symptoms and give our bodies and brains the best chance of ‘self-correcting’.  I quickly learnt that that was my best chance of recovery.  It wasn’t going to be a quick process, I knew that, and frankly I didn’t care if I left the unit no better than I had arrived; all I cared about was learning everything I could from this team of Severe ME specialists and leaving that unit with all the tools I needed to gain back some quality of life at home. . So what did I learn?  First up, Energy Management.  Just as Diabetics have to learn to manage their sugar levels, so ME Patients have to learn to manage their precious, tiny, scarce energy levels.  The aim is to plan activities with military precision to avoid the peaks and troughs so often experienced by Patients, to avoid overloading the body/brain/central nervous system, in effect to establish a consistent and sustainable level of daily activity that avoids relapses through over exertion, usually referred to as ‘Baselines’.  Normal, healthy people can go to bed utterly exhausted and their internal energy production process will simply recharge them overnight; in ME patients our internal energy production process is broken, so throughout the day and especially pre sleep, we have to always keep at least 30% of our precious, tiny, scarce energy stores left so that the body can use that 30% to recharge again.  Without it we are in real danger.  Baselines are levels of activity that we can carry out regularly without making us worse and always allow us to remain with 30% of our scarce energy remaining to recharge. For example, one of the first things we worked on was sitting up in bed and feeding myself.  My Neurophysiotherapist, Louise, worked gently on my tight, weak, knotted back muscles every day and my OT mapped out my goals into tiny manageable steps.  Sitting up once a day for 10 seconds for 5 days, then 20 seconds for the next 5 days, then 30 seconds for the next 5 days, then 45 seconds for 5 days, then 1 minute for 5 days, then 1.5 minutes for 5 days, aiming in the end to be able to sit up in bed for say 5 minutes without a major flare up of symptoms; and then the lifting of the spoon to the mouth incorporated into the activity, say lifting 1 spoonful of food with the right arm, then 1 spoonful with the left arm for 5 days, then 2 spoonfuls each arm for the next 5 days, then 3 spoonfuls each arm for the next 5 days, building up to say 20 spoonfuls each arm and so on.  Painfully slow.  Painfully disciplined.  Same activity at the exact same time, each and every day.  But it worked.   Likewise with my walking.  Increasing my walking from 6 paces per day to 8 paces for 5 days, then up to 10 paces per day for the next 5 days, then up to 12 paces per day for the next 5, and so on.  Nudging forward at a snail’s pace, but nudging forward nonetheless.    Next post, I will tell you how Rest, Deep Relaxation, Pacing, Graded Activity and Switching techniques helped me.  Until then, take care of yourselves.... and please take hope from my story... things can improve, I promise.