Living with invisible illness

M.E. has taught me……..

I’ve been trying to follow the @spoonie_village instagram challenge for M.E. awareness month. I say trying as I haven’t managed to post every day.  Day 13 topic caught my eye as it’s something I’ve been aware of for a while now: ‘M.E. has taught me……’.   Since getting ill my life has changed and it’s taught me so many things.  Too many to cover them all in an instagram post.  What I love most about this subject is the way it focuses on the positive impact of chronic illness.

The power of Natural remedies 

Part of M.E. is a compromised immune system that is super sensitive to prescription medication and its side effects.  This means I’ve had to find alternative natural remedies.  I’ve been amazed at how effective some of these remedies are. This hasn’t just helped me.  I’ve even been able to help family and friends find more suitable remedies.  A great one is the use of d-mannose for Urinary Tract Infections. It’s so much better than using antibiotics. Makes me wonder why GPs aren’t able to prescribe it in this environment of lowering antibiotic use.

Basic medical/biology knowledge helps

I didn’t do biology at school.  I chose physics instead.  So I had to start from scratch learning about biology.  I’ve learned about cell structure, krebs cycle (that’s the cellular energy cycle), the thyroid, the immune system, the endocrine system and I am constantly learning more.  Don’t get the wrong idea, I am not claiming that my google searches are equivalent to a medical degree but equally a basic understanding has helped me question decisions and advice from doctors and practitioners.

The body heals itself

This is one of the biggest concepts for me.  I always thought that I went to the doctor and explained my symptoms, then the doctor diagnosed the problem, prescribed medication and the medication then fixed me.  This is so far from the truth on so many levels.  Doctors (or practitioners) are making an educated guess based on their experience and knowledge.  The body is way too complex to know for sure that a diagnosis is correct.  The really interesting part is that the medication isn’t what fixes us.  It’s our own bodies that know how to heal us and whatever the doctor prescribes is merely enabling the body to get on with healing.  This really changed my way of thinking.  I realised that it is all about creating the optimum environment for my body to do what it knows and wants to do.  Suddenly the holistic approach seemed like the only way forward and whilst I already realised that such a complex condition required a comprehensive and complex approach, this cemented it for me.  If I can remove whatever is blocking my body’s healing process I can recover.

The mind and body connection is so important 

Understanding the gut brain connection means my mind impacts my body and my body impacts my mind. I had dabbled in mindfulness and meditation before, but falling ill made it a priority.  Once I realised the impact of stress on my body (not just my mind) I knew I had to explore this.  I’ve done mindfulness meditation, guided meditation, NLP (NeuroLinguistic Programming), Autogenic training, hypnosis and self hypnosis. 

 

The invisible reality of chronic illness

Once you’ve suffered from a chronic illness you realise how invisible illness pervades.  Just because someone looks happy and healthy this is no indication of how that person is feeling.  It’s just a moment in time that may or may not reflect reality.

Responsibility for my health 

I’ve just read Dan Neuffer’s book ‘CFS Unravelled’.  This confirmed my current approach i.e. be the CEO of your own recovery.  It took me a while to realise this.  Initially I thought if I found a reputable practitioner I could trust them to do their job and fix me.  A considerable amount of money later I realised this wasn’t the case.  I try to ensure I have read up as much as possible on what the current research is showing and understand the biochemistry so I can question any recommendations. 

Nutrition 

The biggest thing I have learned about nutrition is how individual it is.  Once I recognised the dangers of processed foods and removed them from my diet the next step was some basic improvements. I wrote about this previously in my blog on ‘The first changes to my diet for M.E.’  After this things get a lot more complicated and confusing.  Every time someone says something is good for you there is someone else with a study proving the opposite.  The truth is, circumstances count.  This is why a trained nutritionist is essential for this part of my recovery programme.

Appreciation of my friends and family 

There’s nothing like a crisis for working out who can handle stress but when you are chronically ill the stress is a lot more tedious and unrelenting.  I am so lucky to have amazing friends and family that have supported me through some really tough times.  I can’t say enough thank yous to them. 

Appreciating small things 

Somehow I have managed to look after myself without others having to care for me.  Even though there have been days where I haven’t been able to get out of bed I have always managed to shop, cook and care for myself.  In the world of M.E. I know this is pretty amazing.

Social media isn’t the villain

Whilst I am not commenting on recent Facebook issues I have found social media to be so helpful.  It has given me access to other sufferers around the globe and therefore access to so much more information.  But more than that, I’ve found support from others and groups such as Nicola Singleton’s ‘To be a better ME’ are invaluable when you are housebound and needing support or information on how to achieve recovery.  Social media isn’t all bad, it’s how you use it (or is used by others)

Tenacity and focus

This one can sometimes work against me but I still see it as a positive.  Progress is sometimes really slow and never, ever linear.  Improvements wax and wane but staying focused and believing that, if recovery is possible for others then it’s possible for me, keeps me going.  I’ve made great progress over the past 18 months.

 

But most of all M.E. taught me ………… Never. Ever. Give. Up. 

 



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