ME has a nasty habit, or maybe it gives me a good excuse, of knocking me off the healthy nutrient focused eating regime.

I have had a relapse, and I was tempted and gave into naughty unhealthy foods i.e. sugar and processed foods.  I gave in of course and did thoroughly enjoy the triple layered chocolate cake.  Just wish I could have snuck in one more slice. So having been sooooo good I have had a bad 10-12 days, but have now struggled but am back onto the Paleo wagon.  I love eating healthily.

But a bit more about my constant companion ME – myalgia encephalomyelitis.  ME is an extremely difficult illness to describe.  Firstly I have ME and not Chronic Fatigue Syndrome (CFS).  ME includes inflammation of the spine and brain and can include chronic fatigue as one of the myriad of symptoms.

I am living in a perpetual flu-like state which is unrelenting – I have learned that this is not going away.  I will never give up, but after 7.5 years you have to learn acceptance, not give up, but live with it and not fight it.  My levels of acceptance are for another day.

As soon as I wake up – for me – having ME means that any activity leads to deterioration.  On a bad day I may decide not to shower as the exertion can and does  cause my body to “crash” – even when using the shower stool.  Seemingly small tasks such as unloading the dishwasher, cooking turn into energy sucking marathons.  An event such as having family to our home for Mothers Day or meeting an old friend for lunch are huge and can knock me back necessitating days in bed trying to recover. I am incapable of managing day-to-day life. Every little activity is a challenge, with me each and every day I am running this marathon over and over again, every second of every day.  

With ME, the body works in reverse  where activity does not build up the body but actually is negative and hurts the body worsening the ME.

The Workwell Foundation in the US have done in depth testing including bloods and measuring oxygen uptake via “cardio-pulmonary” tests on ME sufferers who are living at a reasonable level and have found problems with the VO2 uptake by the cells meaning that the muscles do not become stronger, but become weaker with overall reduced capacity.  

On standing up, let alone walking, I start to go downhill.  ME sufferers know not to try and work through as it makes it worse if you try.  My heart rate rises excessively when standing.  Today has been a particularly bad day although I cannot remember doing anything yesterday, but after a good but exhausted sleep this afternoon, my heart rate on waking was 130 bpm – yes lying down – totally ridiculous.  But this is a warning to me, to just do nothing, rest, rest and more rest.

I am one of the “lucky” people living with ME, in that Berkshire has no ME specialists at all.  I will explain.  When I became ill I remember learning that ME had been given £1,000 for the whole of Berkshire – interesting compared to other budgets i.e. several million just for drugs in just the town of Reading.  But as Graded Exercise Therapy (GET) and Cognitive Behavioural Therapy (CBT) were and are the only official treatments according to the body NICE I am extremely glad that there was no money to push me into GET.  GET should not and must not be used for people living with ME.

The are ongoing absolutely nightmarish and horrific stories where people have been told to exercise and made to exercise – this has included examples of ME patients bed bound in hospital being told to eat they must get up out of bed and walk to retrieve the breakfast tray on the other side of the room.  Can you imagine telling somebody to do this knowing they are extremely ill.  I understand others do not understand, but there is stupidity and a total lack of common sense, compassion and just a lack of listening to the patient.

There are national and international cases where the ME sufferer has gone from being able to stand and walk a little to being bed-bound and most sadly of all with some sufferers having died.  Although nobody at this stage can definitively say it was GET, as an ME sufferer I know that exertion of any type is dangerous and can put me back years or forever if I overdo it.

For me the illness is constant and unrelenting. I wake up each day having only slept with the help of medication and painkillers. On waking I then judge on whether I will be able to get up, or remain in bed resting. On the many bad days I will not get up, will not have a shower and frequently need to sleep all day long. Often the pain is too much and I am not able to sleep but rest and try and use mindfulness meditation to relax my body to not focus on the pain.

I rarely have normal days, about once every 4-6 months at the most, and this will only been for an hour or so where I feel like pre ME Sally. Most days are a balance of pacing what energy I have, trying to minimize pain and preventing worsening of the symptoms.  Limiting the pain and symptoms is my focus each and every day and night.

For me the limits on my energy and mobility are huge, preventing me from leading a normal life. I cannot stand for more than a few minutes’ or walk more than a very short distance i.e. more than 20 metres without the symptoms quickly increasing. Something like a medical appointment at the hospital takes pre-emptive resting and planning plus ensuring the next couple of days are kept free to rest afterwards. Despite keeping records, the fluctuations are without pattern. Predictability only exists in that the symptoms will be there each and every day.

I do not mean to be depressing.  I have learned so much through having ME.  I am excited as I enter the world of Paleo eating.  Everyday I learn more about the basics of nutrition and move away from all processed foods and sugar, plus grains and gluten.  This hopefully will alleviate symptoms but will also mean my body is as healthy as it can be, plus equipping it to be strong to keep fighting the ME.

OK enough of tinkering with this.  I am learning to write and keep notes in Word and then trying to bring it across to the blog.  The purpose being hopefully that more people will understand ME and what this invisible illness is like.  Yuppie flu – hardly.