Living Life My Way

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I last left the house was on 26th November last year. Actually, November was a remarkable month because I went out twice. Both for medical appointments; the effort of which exacerbated my symptoms owing to my systemic inability to tolerate exertion. This core feature of my illness has been recognised in bold neon headlights by the Institute of Medicine in the USA. Indeed, it has recommended that the universally derided term Chronic Fatigue Syndrome be re-named Systemic Exertion Intolerance Disease. The debate is raging currently both about the proposed name and diagnostic criteria:

SEID Criteria

My gut reaction was to welcome the criteria as they fit most closely with my particular experience (especially orthostatic intolerance) but I recognise that naming a disease after its symptoms is problematic. Only time will tell where this will go but there are some promising signs that the seriousness and degree of devastation of this illness are being recognised.

Although I can’t do very much without suffering the consequences, I make it my mission to purposely enjoy what I do have and can do. I’d like to share a few of the things that brighten my days. Firstly, I’m blessed indeed with having an ever-changing spectacular view from my bedroom window. Here are a few snaps I’ve taken recently:

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Another joy in my life is reading. My condition has to be at its most severe before I am unable to read or comprehend. I spread my reading among social media, books and articles on health or for sheer enjoyment and, occasionally, to broaden my knowledge and horizons. Among the books I’ve read lately:

The Medicinal Chef Healthy Every Day by Dale Pinnock

As the title suggests this is all about eating good, unprocessed, healthy food every day. I love it! I can’t do a lot with it though as it involves standing to prepare and cook. I have managed a couple of recipes though: chicken curry, seafood one pot (although I did eschew the squid in favour of more prawns) and a mackerel salad. Quinoa features quite a bit. Tried it; prefer rice.

Eating well so as not to stress our bodies with processed food is a good thing to do. This book has some excellent recipes to try. I just wish it came with a personal chef ๐Ÿ™‚

Silent Pain: How Stress and Trauma may lead to Chronic Fatigue Syndrome by Helen Germanos

This is Helen’s story of her illness, soul-searching, investigation, therapies and recovery. I was attracted to reading it because it is based on Polyvagal Theory, about which I wrote a post last year. It is a hugely interesting book and Helen’s three-tiered approach to recovery has given me much food for thought. I consider it a most valuable addition to my store of resources about holistic medicine. I also want to thank Helen who has been hugely kind and generous in answering my questions, sharing her knowledge and wisdom, and directing me to sources of help.

The Last King of Lydia and The King and the Slave by Tim Leach

I love historical fiction. I read Wolf Hall and Bring up the Bodies recently, Hilary Mantell’s award-winning books about Thomas Cromwell. To be honest I found both very ponderous and tough going in places. She was rather harsh on Thomas More too which I didn’t altogether appreciate! It was therefore a delight to encounter these two books which follow the fortunes of King Croesus from king of unimaginable wealth to slave. Exquisitely written and a joy to read. The standout man of the books for me is Isocrates, a fellow slave, who gets all the best lines and wisdom.

The Girl on the Pier by Paul Tomkins

I didn’t know who Paul was or anything about him until I read an article tweeted by the ME Association which, very probably, is the best article I will ever read about ME. I then learned that he was a football writer and had penned a novel. So I decided to give it a go, having no real knowledge of what it was about but expecting it to be well written. Oh boy! It knocks your eyes out and takes a good rummage round your psyche, poking sharp elbows in tender spots. It defies categorisation somehow, possibly psychological mystery comes somewhere near. That Paul managed to write a book of this quality while trapped in the ME divers’ suit is remarkable. A fantastic read!

Speaking of football, my last homage to stuff that cheers me is the current fortunes of my beloved Celtic. I’m thrilled that we have signed the cream of Scottish talent in Gary Mackay-Stevens and Stuart Armstrong, both of whom scored (the former within 38 seconds) in the debut game against Partick Thistle the other night. Add to that a hot young Irish talent in the form of Michael Duffy and we’ve had the best transfer window in recent memory. Signing Michael also brought us a new American fan in the shape of Fr Michael Duffy who had never heard of Celtic until he got loads of tweets welcoming him to the club. He knows the history now alright ๐Ÿ™‚

I might not be able to attend games now but my passion is undiminished. Presently, we remain in the league (first place naturally) and 3 cup competitions including the Europa. Next week sees us take on Inter Milan in a full house at Celtic Park. The last time I managed to attend and enjoy a Euro tie was against Barcelona on 7th November 2012. We won and the night defies description. It was electric, raucous and magical. I’ll finish this post about some of the joys of my life with a picture of the pre-match display from which I still have my bit of green plastic:

Self-nurturing Ideas

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Staring at Geraniums

Staring at Geraniums

I don’t think I’m alone in this. My body craves high energy food and intense mental stimulation in direct proportion to how depleted I am. So I eat rubbish and clamp myself to the computer or tv where ready sources of my fixes are to be found. When you’re on your knees the path of least resistance is highly attractive.

Occasionally, I’ll have the energy and presence of mind to ask: what can I do now to best care for myself? Generally, I’ve answered that by taking some form of ‘time out’, usually a meditation or relaxation audio. Lately, I’ve asked what else I can reasonably do that is self-nurturing and liable to promote healing, or at least enrich my existence.

The list that follows is what I’ve devised, written in the order that ideas came to mind. Looking at it, I see that stuff can be grouped together into activities that please the body, mind, spirit and the five senses whether singly or in cumulo. Some of them are simply about feeling more like my old normal self. The ones I’ve starred are rather more aspirational than realistic right now.

The quality, duration and effect of each will depend on how I’m feeling at any point. I’m conscious that overdoing any element, or choosing badly, will have the opposite effect to the one I desire but I’m giving things a try.

So far, I’ve rediscovered my record collection. Listening to the tunes of my youth has been a remarkable experience. Lots of tears. I’ve also had a scented bath, by candlelight, practising my deep breathing technique. I was given a bouquet of roses last week and have spent time just looking at them, marvelling at their intricacy and beauty. I even had my make-up on one day!

I don’t think a list like this need be the exclusive province of the chronically sick. I think everyone could benefit from devising ways that help them look after themselves. Only I guess that such lists will be rather more adventurous.

1. Sleep/nap
2. Lying still in a quiet room
3. Three diaphragmatic breaths
4. Listening to music
5. Meditation/relaxation session
6. Bath
7. Applying hand/body lotion or perfume
8. Doodling/colouring-in
9. Journal writing
10. Blog writing
11. Prayer
12. Small amounts of nutritious food, eaten mindfully
13. Laughing
14. Crying
15. Stretching
16. Yoga poses*
17. Physical activity*
18. Fresh air
19. Short visits/telephone calls
20. Massage
21. Knitting/Cross-stitch
22. Just sitting looking at something nice
23. Taking a photograph
24. Looking at photographs
25. Something achieved, no matter how small
26. Sending someone a letter/text/email/tweet
27. Act of kindness towards anyone
28. Drinking a glass of plain water
29. Brushing teeth/hair
30. Dressing nicely/putting on make-up
31. Singing
32. Dancing*
33. Spot of gardening*
34. Cooking
35. Interior design*
36. Heartmath
37. Candlelight
38. Reading
39. Menthol inhalation
40. Drinking fresh vegetable juice.
41. Giving a compliment (or receiving one)
42. Companiable silence/ time spent with my children
43. Practise feeling grateful.
44. Hugs

What I Did On My Holidays

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eilidhh's 128As promised, here’s the lowdown on my break. The first couple of days were hugely relaxing, almost like a weight of responsibility had shifted .Mostly, I slept and read and ate just what I wanted. I glimpsed briefly a possibility of wellbeing. Thereafter, the break resembled a real holiday: gippy tummy and a hangover every morning!

So, what have I learned from this experience?

I missed my interaction on Twitter and Facebook but there is no doubt that without it life was calmer, with more space, and my head was clearer. Physically and mentally.

What else? For the first few days I did stop myself thinking about my health but gradually that thinking returned, not too surprising given the intense pain in my gut. I also found I was checking my heart rate. But I didn’t question myself too much about whether the things I was doing were correct or not. Forgive the pun, but I went with my gut instincts.

I tried to focus on enjoyment but the reality was that felt artificial. Either I lack the necessary imagination or the fact that I was within the same walls, with the same set of limited opportunities, made it impossible to engender any sense of satisfaction.

On the plus side, I did perform a few physical feats–emptied some boxes, made soup andโ€ฆ.wait for it, walked to the end of my road (and back) without (so far) setting off a major setback. Might not seem much over the course of 10 days but I know the achievement they represent.

For me, trying to recover is a bit like stumbling about in a dark cave, not knowing the way out or even if there is a way out, with no-one able to guide me except the bright lights of manifold articles, stories and opinions which blind rather than show the way. Perhaps, only by living my own life and own health will I discover how to improve my lot, or, if this isn’t possible, to live as best as possible with it. My former doctor gave me a wonderful piece of advice: don’t fight your own body. Perhaps, for me, that’s the only advice I need right now.

In practical terms going forward this means:

1. Avoiding articles, stories of recovery, advice and so on and listening only to what my body is telling me.
2. Reduce the length of time spent on the computer. Enjoy quality moments and exchanges.
3. Be careful about my diet. Nothing too drastic but my gut dramas let me know that anything most certainly doesn’t go.
4. Aim for a relaxed approach to any activity; shift permanently the weight of responsibility about recovery that anchors me into a miserable cycle. Stop bloody worrying!
5. Stop feeling that I ought to be more than I am or do more than I can; go with the flow.
6. Keep testing my boundaries without apportioning meaning to any outcomes. Some days will be better than others.That’s true for everyone.
7. Continue to seek out enjoyment without guilt. Similarly, not to become despondent if nothing feels fresh, exciting or rewarding.
8. A recurring theme of this blog: practise gratitude. Make a point of noticing all the good stuff.

So there we have it. No miraculous recovery by trying to do things differently but some useful insight.

A final thought: I think the premise behind my break was right. Efforts to focus on recovery inevitably become a focus on the illness itself. When you focus on something it becomes bigger, stronger and better developed. It takes over. You identify with it to the exclusion, or suppression, of everything else about you and in your life. I think it would be in my interests to find something, ordinary or special, that occupies my attention away from the world of illness and disease, and which can be managed within my limitations. What that might be is as yet a mystery to me.

Resistance Is Futile

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The aftermath of my mum’s death has proved to be a period of sorrow, reflection and contemplation. A lot of sadness yes, but interspersed with moments of joy and gratitude especially to the many people who got in touch to express their sympathy. I’ve also become acutely aware of my own mortality and latch on to any stories involving illness, particularly cancer, and especially if it’s a terminal situation. Yesterday, I read about Lynda Bellingham, the effervescent actress who has written about facing up to terminal cancer. She described herself as a liver and lover of life. This resonated with me. It paints a picture of someone who cares about living their life to the full, wresting every last drop from the experience.

So I thought: what does it mean to live life to the full? Does it mean having many and varied experiences, travelling the world, seeing the sights, sampling different cultures, speaking different languages? Does it mean being successful in your work, gaining promotions and being recognised as an expert? Is it about having a successful marriage, having children or a successful social life, a wide circle of friends? Or is it about being creative: writing poetry, painting, playing a musical instrument, singing and dancing? Or is it about being kind and charitable? Does it mean being politically active, seeking to change and influence the way the world conducts its business? Or does it involves meditation, prayer and contemplation? Is it about having money in the bank and nice possessions? Does it mean having a comfortable home, a retreat , a space to call one’s own? Is it about peace of mind? Is it about embracing culture? Or having a passionate interest in sport? Is it about eating well, exercising adequately and taking care of your body? Is it about the pusuit of knowledge and understanding?

The answer is that there are as many answers as there are people. To use my favourite legal phrase: it all depends on facts and circumstances. Context is everything and it changes.

Resistance to change creates suffering. In my case, I realise that I cause myself physical suffering by fighting to do the things I used to take for granted and emotional suffering by believing my imagination about the things I ought to be doing. Specifically, I believe that in order to live my life to the full I ought to be living in a certain way. After all, I see my contemporaries doing this: going to work, raising their children, having nights out and holidays and various activities from the list above and I want this too. This longing causes anguish. All the more so because I did not choose my change of circumstances. I did not ask for this illness and I would like it removed, with immediate effect.

But hold on, isn’t it possible for me to live my life to the full in a different way, taking account of my illness rather than resenting its presence? After all, I was never going to be Prime Minister, Pope or a pop star anyway. Can I find a way to have a variety of enriching experiences, and enrich other peoples’ lives, within the context of my existence? In other words, can I reframe my life from one of loss, longing and suffering to one of fullness? If so, what, realistically, would that look like?

I think it begins with acceptance of my limitations. Toni Bernhard writes about this so beautifully in her book ‘How To Be Sick’ and I recommend a read of this for anyone trying to manage a serious illness. It’s about bringing peace to your heart, mind and soul. From there, to consciously direct my attention on what I do have and what I can do and the achievements I can make, not some mythical perfectionist ideal. Thence to listen to, and act upon, my instincts, being kind and compassionate with myself.

So, this might mean that a full life for me in any given day involves learning about the day’s events by watching tv, engaging in a social life by having a visitor or exchanging tweets, being creative by writing this blog or (on a good day) standing for long enough to make soup. Or counselling my children from a prone position. Or offering a listening ear and gentle advice. Or watching the changing seasons from my window: like an ever-changing triptych painting. Or reading and dozing, allowing my body to rest. Or taking pleasure in seeing, reading about and hearing the exploits of my friends. Or simply being: having time in peaceful solitude, untroubled by external pressures. Or being grateful for the many and varied ways in which goodness and kindness express themselves in my life.

This doesn’t mean that a corner of my soul doesn’t long to be outside gadding about with gay abandon; only that the thought doesn’t prevent me living my life, with all its limitations and debilities, to the fullest extent.

What does living life to the full look like to you?

Loss

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DSC02446One of the enduring themes of this blog has been the subject of loss. I’ve described how, in the last year alone, I’ve lost my career, home, social life, ability to go and see my beloved Celtic, and conduct relationships. Now I’ve suffered the most acute loss: my mum. She was diagnosed with cancer around the middle of July and, on 9 September, passed away gently.

In recent years mum devoted herself to caring for my children and me, staying with me for weeks at a stretch, taking the burden of running a household on to her frail shoulders. It is not without irony that I tell you that the last time I saw mum it was she, with a few weeks to live, who visited me because of my relapse. Thank you mum for that unwavering,uncomplaining, unconditional support.

Thanks also to the many people, known and strangers, who have offered their prayers, good wishes and support. Loss of a human being brings us all together. It brings out the best in folk. It is a shared experience where we all get our turn. It signifies change and adjustment. It allows us to pause, reflect then go on, bereaved but enriched also for having had the person in our lives.

For those of us who are ill, loss brings fresh challenges to bear.

For my mum, I am grateful that your period of suffering was short and your death peaceful and untroubled. Eternal rest grant unto you, may perpeptual light shine upon you and may you rest in peace.

Relationships and ME

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Relationships are a fundamental part of the human condition. Indeed, it is impossible to be healthy and grow as a person without positive interaction with others. Just think of the importance of nurturing relationships with infants. By and large, they are a two way street; each with its unique characteristics. I’ve had cause recently to dwell upon the importance of relationships in promoting recovery.

I had a visit from a friend I hadn’t seen for over 20 years. It was a surprise. The visit was lovely, full of intelligent, interesting conversation. A prize beyond rubies. I felt buoyed and looking forward to the next occasion. It hasn’t happened. I have realised that, with notable exceptions, this is a familiar story. I am left with a sense that I am less of a person than I had been pre-illness. An object of pity, an afterthought, a duty, a good intention never fulfilled.

So, a message to anyone who might be thinking along these lines. I’m the same person I ever was. I just need to behave in a fashion to which you are unaccustomed. I am acutely aware that your relationship with me needs to be much more of a one-way street as my limitations are severe. I would much rather that it was not. I also know that you are exceptionally busy and I have no wish to be the cause of any sorrow for you or rejection for me. That is why I don’t initiate contact.

Without successful relationships though, it is so much harder to recover. ME is a hard mistress: unconditional support, encouragement and love help, they really do. I am hugely grateful for those who offer this, many of whom are in the same boat as me and expend exceptional amounts of their available resources to do so.

If you’re reading this and you know someone with a dreadful illness, pick up the phone, send a text or email or letter. Let them know that they matter; that they haven’t been forgotten about and that you are interested in them, regardless of their debilities. You will do more good that you can ever possibly know.

Gratitude

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Red Arrows over Paradise

I’ve just weathered a perfect storm of circumstances that culminated in the most serious relapse I’ve endured since developing this illness 8 years ago. In common with many people, I feel drawn to writing about how awful it was: describing the sensations, feelings and thoughts, worries and fears in the hope that by so doing it will add to a collective body of first-hand evidence that will spur the scientific and medical worlds into action. But I’ve decided not to. I suspect my prose is liable to fall into cliche lessening the impact on any casual reader.

Instead, let me express my gratitude towards the people who were with me when this relapse was raging and threatening to overwhelm me. My sister who sat with me, distressed. My new GP who offered compassion. Twitter buddies who offered many kind thoughts and prayers. Old friends who phoned, texted or visited or whose visits I needed to postpone. My children who have become reluctant housekeepers. My priest who offered solace. And many more.

Let me also pay homage to the small marvels of our world from which variously I found succour. To the clouds I watched bloom and chase across the sky. To the hills, steadfast in their assurance. To food and drink. To formulaic tv programmes. To books in small doses. To social media, my other window on the world.To meditation and relaxation audios. To having a loo that is only 7 steps away!

Mostly, I’m grateful that the worst has passed. I am in respectful awe of those for whom such respite never comes.