The many challenges of recovery.

Sometimes I feel like David facing Goliath. Some onlookers may see David as a weedy, pitiful shepherd boy who may conjure up curiosity, sympathy and concern but not much confidence in becoming victorious over a trained, mighty, giant warrior!

There are many ‘Goliaths’ that I’ve faced since being diagnosed with Myalgic Encephalomyelitis (ME): Disbelieving & disparaging doctors; media that likes to tell me that it’s all in my mind; friends that give simplistic offers of ‘cures’. For many, the benefit system is another huge Goliath to face, constantly having to ‘prove’ their illness to a skeptical audience. If there was was proof, a reliable biomarker, or blood test life would be so much easier for all concerned but funding for science is another Goliath and so the cycle continues…

However, I never cease to be amazed by the courage and resilience of fellow ME sufferers. The ‘David’ I see in them is the defiant David that takes on the challenge against the odds! Just getting through some days takes enormous courage but despite limited energy they gradually chip away at institutions, medicine, governments and are forever creative in fundraising and awareness raising. Sadly, this often comes at a cost to their fragile health.

A typical response I got from one of my friends when I explained that I had ME was “oh yeah, that’s the nice illness where you just sleep a lot!” Ignorance can also be a hurtful Goliath!

Over the last two years I have tried a whole array of things in an attempt to get my life back on track. I’ve done a lot of reading and self educating. ( With hindsight, I wish I had worked alongside my GP who was sympathetic but knew nothing about ME, but I didn’t believe I would be unwell for so long and I have been badly hurt by previous ignorant medics.) I opted for the self help route which included:

1. Endless days of rest, sleep, and more rest

2. Cutting out work, social contact, all physical activity

( The illness dictated these first two – I had no option)

3. Consulting a ‘Combination therapist’ every 3 months

4. Eliminating gluten, sugar, alcohol  (all stimulants) and keeping a low GI ( & high nutrition) diet

5. Taking daily supplements ( Probiotics, L-Glutamine, Vitamin C,D, B12, Iron, magnesium, CoQ10, Vegepa (omega 6 -omega 3)

6. Reflexology and physiotherapy

7. Tai chi

8. Mindfulness

9. Braintraining (!)

10. Strict diary management even for pleasurable social activities

11. Saying no a lot!

12 .Signing up for the ME Biobank – London ( to help research )

13. Enrolling on a discipleship course 1 day a week

14. Prayer

15. Specially tailored 1:1 Pilates classes (only after over 18 months of the above once my body had improved and stabalised & despite several failed attempts to reintroduce exercise)

16. Bowen Technique

 

After two years of hard slog ( yes, it feels as though I work hard every day to get myself better and would be another blog in itself!) I’m generally around 70-80% well but a bad day can still launch me down to 40-50% in a blink of an eye. This is a huge improvement to where I was nearly 2 years ago but what helped this recovery? There is no way of knowing for sure, the science isn’t there. There is no way of knowing if I would have made the same spontaneous recovery if I had done nothing and of course the remitting – relapsing nature of ME means I can not be sure whether this improvement will be sustained or if another relapse is waiting around the corner so I do not boast any claim. I just go with what feels right for me.

Does this sound like the action someone who “just likes to sleep a lot” would take?! Many sufferers are blogging and recording their own ME journeys. You don’t have to wander far into the worldwide web to see how overbearing people’s personal ‘Goliaths’ are and how bravely people step up to them. People are trying all they can to get themselves well against a backdrop of institutionalised distrust and disbelief. I wish the government would take account of these before setting ridiculously cruel criteria for accessing benefits. I confess, I’ve never had to go through the ordeal myself but in the early days I know I couldn’t have worked if my life depended on it. Of course, for many it does. Paying bills and putting food on the table can be the most many can hope to achieve, never mind high cost fancy diets and alternative therapies that may or may not bring some relief. Indeed Scope have estimated that it costs disabled people on average £550 extra a month just to live. It’s little wonder people with invisible illnesses are feeling defensive, vulnerable and scared.

If you share my feeling that there needs to be far greater compassion and help for the chronically sick and disabled in the UK then do look up and share the work of Compassionate Britain.  There are times when neither a carrot nor a stick are needed from governments, just a bit more compassion and desire to stand alongside people that are suffering. If society is judged by how it treats its most vulnerable, then we have a long way to go to become the civilised society that the government likes to think we are.

However, if you are reading this and feel too small and insignificant and that facing Goliath seems like a pointless task, it’s worth remembering how the story ends?! Against the odds, and armed with nothing more than a few small pebbles and a sling, the mighty Goliath was slain!

 

 

 

 

 

 

 

 

 

 

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