24 September 2014

Do Not Go Gentle

Grab the cuppa of your choice and make yourself comfy, this is a long one! But it may also be the most important and passionate thing I've written.

I love Dylan Thomas' poem 'Do Not Go Gentle'. (Click here to go to YouTube to hear the full poem read by the man himself.) I know, I know, it's about death, but actually I think it's about life and how you live it. We all have challenges of one kind or another; do you just resign and submit to the hand you've been dealt? Or do you strive for 'life in all its fullness'? And what does that mean for those who are very severely ill, who are already in a living death?

Another poem I've thought a lot about lately is Invictus:

Invictus is Latin for 'unconquered'. William Ernest Henley wrote the poem after undergoing a leg amputation and while recovering from intensive surgery on his remaining foot. The poem was part of the inspiration for the recent Invictus Games in London; as the website for the Games states, they are "an international sporting event for wounded, injured and sick Servicemen and women... about survival in the face of adversity and the strength of the human spirit... a celebration of resilience and passion."

I love this concept. I am rarely able to watch TV, and the noise and fast movements of sports are particularly difficult, so I only watched a tiny bit of the Invictus Games, but I saw enough to be moved and inspired. I used to work as a Support Worker for people with long term neurological conditions (ironic, I know), and I have always been passionate about facilitating people with disabilities to find their own ways of living their lives to the fullest they can. I love the incredible opportunities that are out there these days for people with disabilities. Like the Paralympic Games, the Invictus Games and the two poems mentioned above all fan the flames of my passion for life and for fighting against adversity. It's beautiful stuff. And also a bit troubling.

I look at those athletes with disabilities, and I find myself inspired, moved, and troubled, because, if I'm honest, I'm a teensy bit jealous of them. 

I have huge admiration and respect for them, and nothing in this post is meant to diminish their incredible achievements or disregard/make light of their deep suffering. I know many of them have been through huge trauma and pain, all of them have faced overwhelming challenges, and I know that - on the face of it - their disabilities are far more severe than mine. My body is not outwardly scarred by my illness; I can see, I can hear, and I have all my limbs. But I can't do a tiny fraction of the things they can do. Many days the toilet is as far as I can get. It has always been my ambition to run the London Marathon, but now I am not even able to watch it on TV. Does that mean that I have any less willpower, strength, or determination than athletes with disabilities? Of course not! It just means our situations are different and we are each doing the best we can with the hand we've been dealt. To put it somewhat crudely, people with disabilities can be split into those who are 'fit disabled', and those who are 'sick disabled'.

Society isn't great at accepting people with disabilities. People don't like to be reminded of the frailty of the human body or see anything that doesn't match up to today's false and unattainable standards of beauty and success. All people with disabilities have had to deal with discrimination, ignorance, and prejudice of some form or another. However, things are improving, and events like the Invictus and Paralympic Games have definitely helped to show people with disabilities in a positive, inspiring way. But what about those in the 'sick disabled' group?

Society is rightly inspired by athletes and others with disabilities who achieve great, heroic deeds in a blaze of publicity (how amazing is this guy?!: Aaron "Wheelz" Fotheringham -- The Story: http://youtu.be/U2D6Iy7m7qI), but I think we should be just as inspired - maybe more so - by the very severely sick people who struggle on behind closed doors each day, who don't give up the fight, whose spirits - though wounded - are unbroken. For many, just continuing to breathe is a harder feat than climbing the highest mountain - and they do it hour after hour, day after day. That is strength, that is determination, that is resilience. That is inspiring.


Being an athlete, whether you have a disability or not, requires great sacrifice and incurs significant physical pain. But athletes choose that lifestyle, and they can choose to stop; they can choose whether or not to train that day, they can choose to cut a training session short if the suffering of their body becomes too much, and they can choose whether or not to continue with their athletic career. People with illness did not choose to be ill, and they cannot choose to stop being ill. All they can do is fight the illness by doing all they can to maximise their health. People with ME, especially those with very severe ME, fight at least as hard as athletes, but their achievements are measured on a totally different scale, and there are no medals hanging round their necks. But just because their achievements are measured in millimetres rather than miles doesn't make them any less noteworthy; perhaps the opposite.

So, to get back to where I started this post, how do people with severe chronic illnesses fight? How do we 'rage against the dying of the light'? How do we strive for life in all its fullness, become the masters of our fate, and keep our souls unbroken, unconquered? Because triumph over adversity doesn't mean that the adversity goes away. Maybe the phrase should be triumph IN adversity.

Pre-ME, I didn't exactly have a clean bill of health. Complex gynae problems caused all sorts of issues, including extremely severe chronic pain. (See the first few paragraphs of this post if you want a bit more detail.) Things were very tough going there for a while. The only way I could mentally and emotionally cope with the pain was to pretend it wasn't there and just 'push through' it. I became a pretty good actress, and even those closest to me could often not tell when the pain was getting worse.

'Pushing through' became an ingrained coping strategy. People have told me how inspiring I was to them, how much they admired my fighting spirit and my ability to keep going - and that's lovely, but it wasn't a natural or even necessarily healthy way to be. Pain and other physical symptoms are there for a reason; they are the body's signals that something is wrong and we need to do something about it, and ignoring those signals is tantamount to self-neglect. But I was striving to make the most of my situation, and I didn't know how else to do it.

And I must admit, that striving did serve me well; after being finally told by the local surgeons that there was nothing more they could do for me, I decided to take control of my own health care. I did a load of internet research, which led me to a national specialist surgeon; long story short, he operated on me and gave me my life back AND made it possible for me to have a child. So I don't for one second regret my refusal to give up on life, but the 'pushing through' aspect of this coping strategy had become an automatic part of me, to the extreme that, some years later, I refused to believe there was anything more than a bit of bruising wrong with my ankle, when in fact I'd actually broken it. That's not admirable or inspiring, that's just stupid. I didn't learn my lesson, though.

When I got ME in 2011, before I was diagnosed in 2013, this 'push through' mentality came straight back to the fore. I ignored pain, numbness, dizziness, balance problems, muscle spasms, increasing cognitive impairment, and more, compounded by the fact that when I did eventually tell my doctor what was happening they refused to take it seriously. So I kept going to work and I forced myself to exercise despite tears of pain and frustration. I didn't tell even my closest friends and family how bad things really were - in some cases, I hid the fact that there was anything wrong at all - even when I had to give up work in 2012. I even set up a business from home, and ran myself ragged trying to help friends. I had no idea how dangerous all this was, because I didn't know I had ME or what that meant; I didn't understand why my health was getting worse and worse, despite healthy eating and exercise and trying to think positively and giving up work and everything else I tried. I thought I was looking after myself and trying to improve my health, but I was forgetting the most important thing: to listen to what your body is telling you.


The fact is, that no amount of exercise, positive thinking, ignoring symptoms and pushing through will help someone with ME; quite the opposite. Any amount of overexertion is dangerous and *will* cause a worsening of the condition, no matter how much you want to believe otherwise. I guess it's not so surprising that I've gone from mild/moderate ME to severe in just a couple of years. If I had listened to my body, and if the doctors had listened to me and given me appropriate advice, it's quite likely that my ME would now be far less severe than it is.

Once I was diagnosed with ME in 2013 and learnt more about the disease, I realised that I had to unlearn all those old 'push through, ignore the pain' coping strategies that were doing me so much damage, and learn to listen to and respect my body. Well, once I'd understood that, that was fine; I took myself to task and did the difficult work of changing my unhelpful thinking patterns, and was rewarded with a greater level of stability in my health. By August/September 2013, I realised that I was having less health 'crashes', and some symptoms had actually improved. Other events later caused me to become much worse, but that's a whole other story! The point is, you can do everything else perfectly, but if you keep 'pushing through' and don't listen to your body, ME *will* get worse.

Accepting all this vitally important stuff, though, is not without its dilemmas. If I couldn't 'push through', how could I 'rage against the dying of the light'? How could I fight?

I guess it all comes down to this:

People with ME have to change our perceptions of what 'fighting' means to us, and also change our perceptions of 'life in all its fullness'. Fighting needs to become not pushing through or ignoring our symptoms, but maximising our health by respecting our bodies, resting, and learning to say 'no'. Living life to the full needs to become about finding meaning and fulfillment in beauty, joy, laughter; in choosing our priorities; in connecting with others when possible; and in the things we do achieve, rather than measuring ourselves against society's standards of achievement and success. Reaching out and finding mutual support with others in the same boat is key to this; most people would respond with a disgusted 'eeuugghh' if I told them I just had a shower for the third time this year or whatever, whereas people in a similar situation to me see this as a huge cause for celebration. They know that this is my Everest, my Olympics; they cheer me on, and they understand when I am then not in contact for days because of the repercussions of such a huge activity.

This has a positive knock-on effect on your mental state, or at least it does for me; learning to see joy and beauty and meaning in the little stuff, stuff that other people don't even notice, opens us up to a world of amazing things. Those things were there all along for everyone to see, but life gets in the way and we just don't appreciate them; it is joyful to re-learn a child-like excitement for life and the world. It is nearly six months since I last went downstairs, and even longer since I went outside; imagine how incredible it will be when I can look at the sky again, smell the air, and feel the wind on my face. I am SO looking forward to that, but if I wasn't currently confined, if I'd been seeing the sky every day, I would have no idea of how treasured that experience should be.


I'm not saying this stuff is easy to learn or to put into practice, and I'm by no means an expert. It was actually my Mum who brought the Invictus poem to my attention; she said she thinks it embodies the spirit that keeps me going. This really blessed and encouraged me, but I think it's overstating things somewhat and I definitely can't say that I am "unafraid" or that "I have not winced nor cried aloud" (although I'm not so sure that's a bad thing; I am still human, there's no shame in admitting that life is tough, and not giving vent to inevitable feelings of pain, grief, anger etc will only cause them to fester).

It's extremely tough to keep an appropriate kind of fighting attitude going in the face of the world's disapproval and their judgement that we are 'giving in'. The media, and therefore the public, have been hugely influenced by certain psychiatrists who, for their own vested interests, claim against all medical evidence that ME is mere fatigue caused by deconditioning and fear of activity. So the public see people with ME as lazy, demotivated, and just not trying hard enough. And, to be fair, ME is a tough disease to understand, and if you haven't lived with it it's hard to understand the depth of suffering or how exertion can be so damaging. So well-meaning people frequently try to encourage and challenge me to do more than I know is safe, and I can tell they think I'm giving in to the illness. It's tough to maintain your resolve in the face of such attitudes.

What it is perhaps impossible for many to understand is that, by stopping myself from doing things that I could perhaps sometimes manage by overexerting myself, I am not giving up or giving in to the illness; in fact, *this is my way of fighting*. It's my way of keeping as stable as I can so that I can still enjoy as much quality time with my husband and daughter as possible, rather than always being too sick to have them in the room. It's my way of retaining some capacity for laughter, joy, and the appreciation of beauty, rather than being blinded and depressed by overwhelming pain and other symptoms that may not have been so all-consuming had I been more sensible. It's my way of doing what I can to reduce the likelihood of the disease progressing. Ultimately, it's my way of trying to keep myself as well as possible so that our daughter may be able to keep living with us - and there's not much in this world that is more important to me than that. This is my way of 'not going gently into the night'.

Everyone is different. We all have different needs, interests, family circumstances, priorities, and passions. We find beauty and meaning in different things, and have different things that keep us going. And in the ME world, there is a vast range of severity levels, which will obviously impact the way in which someone fights and the choices they have to make. I am incredibly fortunate to be able to have so much joy and beauty in my life; people with very severe ME are much, much more limited, but not through lack of fighting spirit or love for life. We need to be careful not to judge or criticise someone else's way of fighting; we're all different and have different needs, interests and priorities.

To all the ME warriors out there, especially the very severe, and including their carers: I salute you. You triumph daily at your own personal Invictus Games. Your endurance, fighting spirit, and perseverance are incredible. If I could give you each a thousand medals I would, and you would deserve every single one. (See my next blog post: Triumph In Adversity Awards.) You rage against the dying of the light each day and strive to live life as fully as you can; you are a huge inspiration to me. Thank you.

Eeeek, sorry this is such a long post. But one last thing, for those who are interested: there are many things that keep me fighting and living life in the fullest way I can, from looking at photos of family, friends, nature, and funny cartoons; to spending time with my husband and daughter; connecting with friends online; giving and receiving friendship, support and coping strategies; and writing this blog. These things help me to feel alive and keep me going. But the one thing above all others that keeps me going is my faith in God. He is my comfort, my strength, my hope, my anchor. In case they will help anyone else, I've posted below a few of the many Bible verses and worship songs that have encouraged and inspired me through some very tough times.


'In Christ Alone'

'Great is Thy Faithfulness'


(I love that line, "I might just bend but I won't break as long as I can see Your face" - powerful)

'Never Once'

'Desert Song'

'Faithful One'


I'd love to hear what you think! Do leave a comment if you have anything you'd like to say about this topic. If you have any difficulty with this process, please see the Site Help page. Please bear with me if it takes a while for me to respond; I really appreciate you taking the time to read and comment on my blog, but I'm not always well enough to reply. Thank you :-)


Sally Burch said...

ME is so cruel a disease, and steals so much from us. And learning not to fight on, is one of the toughest things. xx

Rachel said...

Yes it really is! Thank you for commenting :-)

Anonymous said...

I've had to skim read some but I've thought about a lot of these ideas too. It's a bizarre experience to be jealous of the paralympics, but there isn't a single category we could compete in! I haven't heard the terms fit disabled and sick disabled before, I think that it's important the fit disabled have insight into our circumstances as they're more likely to have energy for disability campaigns.

Alex Howard (OHC) says there's no hard way (as in pushing) to get better from ME only a gentle way. It is hard to be so gentle on your body though, it requires extreme self control and endurance.

Lisa England said...

This is just BRILL! I wish everyone with ME could see it because it's so helpful, honest and full of hope all at the same time.
ME poses so many dilemmas about how to cope and how to take charge of our health in a world that really has little understanding.
Will remember the phrase sick disabled. It's a good one.
You've written so clearly and openly. I love it. Thank you

marthe said...

Thank you from me, too. I need to be reminded of these things every day - because I tend to slide back to self-will (e.g., "pushing" , AND just because I literally can't remember!, compromised brain and all....:) Blessings to you, dear author, and to everyone around us!

Rachel said...

Thank you for commenting! (And I'm sorry it's taken me so long to reply.) Yes the jealousy thing is a weird thing to find yourself feeling! And yes, I agree it requires huge self control and endurance to be gentle on your body. Tough stuff to learn and practice!

Rachel said...

Thank you so much for your comment! I'm sorry it's taken me so long to reply. I'm really glad you found the post helpful. I can't tell you how much good it does me when I hear that something I wrote helped someone; makes me feel a bit useful again! Yep, lots of dilemmas posed by ME; it can be a bit of a minefield! Thank you again :-)

Rachel said...

Thank you Marthe! Yes I know exactly what you mean about compromised brain! If I could choose just one symptom to get rid of, it would be the cognitive impairment. I think it's one of the cruelest aspects of ME, that it's a disease which needs careful management and requires you to think through every activity to decide if it's safe to do or not, and if there's a lower impact way of doing it - but it simultaneously destroys your ability to think and make decisions. So many times I've overdone things and suffered for it, not because of deliberate 'pushing through' etc but because I literally forgot to think! Ridiculous. Blessings to you too :-)