Is It Really That Simple?

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I asked myself a question: what is it that I do that makes me feel worse/better? Here are the answers:

 

Worse Better

 

    • Standing/walking (physical activity)
    • Relaxation/Meditation session
    • Computer use
    • Reading/dozing
    • Disordered sleep
    • Restorative sleep
    • Emotional upset/worry/stress
    • Love and compassion
    • Eating
    • Drinking water
    • Infections

 

At first glance it seems so very simple. The first category are stressors, the second relievers. Avoid the first and do more of the second and surely recovery is a given?

 

Is it really this simple?

 

Of course not. So much is outwith our control and we can hardly avoid eating and standing up! What we’re left with is trying to forge a balance, sometimes from moment to moment, depending on what the external world is throwing at us and what our bodies are capable of withstanding. This involves making conscious choices we know will make a difference: choosing the right foods, having a rest instead of being clamped to the computer and so on. And not giving ourselves a hard time if we don’t manage.

 

Also, there’s a world of difference between feeling better and being recovered. But feeling better is a good start!

Ordeal Scale

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I’ve noticed that my degree of recovery (or otherwise) can be gauged roughly according to a scale of how much of an ordeal any action or event creates.

 

For me, an ordeal is defined by any action which creates serious, abnormal and distressing symptoms or where the anticipation of any action or event creates a debilitating sense of anxiety causing physical symptoms.

 

Here’s a highly unscientific scale I’ve devised of activities which might constitute an ordeal:

 

  1. Lying flat
  2. Light, sound, touch, reading or watching tv
  3. Turning over
  4. Being downstairs
  5. Computer interaction
  6. Sitting up
  7. Standing up
  8. Brushing teeth
  9. Standing for increasing periods of time
  10. Shower
  11. Walking/pottering around the house
  12. Light domestic tasks
  13. Having visitors
  14. Making meals
  15. Walking outside for increasing distances
  16. Being driven
  17. Driving
  18. Attending medical appointments
  19. Social visits
  20. Train journeys
  21. Shopping
  22. Attending social events
  23. Days out
  24. Holidays home and abroad
  25. Working full time
  26. Absorbing impact of emotional upset
  27. Managing infection

 

I’ve managed all of these without ordeal during the currency of this illness but since my major relapse in June 2013 I’ve managed only to get to no. 14.

 

One of the principal reasons for recording my thoughts is to try to discern some pattern, some causation that might inform my choices and actions. I confess to a devil that lives in my mind called Major Worry that the deterioration in functionality since 2013 is irreversible and that I may never again get beyond housebound.

 

I have my times of sheer despair when I find myself sliding back down this scale. Two nights ago, I sunk as far as no. 3. I console myself with the thought that my functionality is variable and what can go down can of course go up.

 

My prognosis is uncertain so it seems to me counterproductive to make an assumption that I’m doomed when the reality could quite easily be the opposite. So, perhaps foolishly, I choose to believe that I will, over time and giving myself favourable conditions, climb up that scale, inch by excruciating inch.

 

Today I’m having a visitor. I’m not anxious about it (hooray) and it remains to be seen what effect the interaction will have. Next week I have an important medical appointment which involves me being driven to Glasgow. I am anxious about this but will do it anyway because I anticipate that the long-term benefit will outweigh any potential risks.

 

I wonder just how many of us live with this sort of scale every day?

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 and….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.

Holiday

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eilidhh's 271It has dawned on me that I’ve reached a point where my recovery is going nowhere. Since my last day at work, on 6 June 2013, my principal occupation, nay preoccupation, has been to strive to recover a reasonable level of health and functionality. I have treated this as I would have any legal problem: engather and analyse the facts, take expert advice, assess the options, and proceed accordingly. At this point, I feel that the facts are not certain and impossible to establish, and the advice contradictory and confusing. I don’t even know for sure what illness I have: is it ME, Chronic Fatigue Syndrome, Post Viral Fatigue Syndrome, Dysautonomia, Cardiac abnormalities or an illness that is peculiar only to me? I have no definite idea of its causes, its pathology and thus no certainty about what to do for best.

I spend a lot of time seeking out information and advice. Lately, where I would have found inspiration from a recovery story I feel alarm. Typically, they run along the lines of; I was desperately ill, tried everything, limped along, then finally the key element dropped from the sky and now I’m running a marathon. That key element varies enormously from finding sensitivities to mould, diet change, addition of supplements, to psychological or other lifestyle changes. How do I know what my key element is or even if I have one? I’ve found myself questioning the basics. What does pacing actually mean? What am I meant to do? What about diet? Supplements? Sleep? Attempts at activity? How do I know if I’m doing the right thing for me? Worse, am I doing myself any harm? Have I damaged myself irreparably? I’m wracked with indecision and self-doubt and that can’t be good for me of that I’m certain!

From tomorrow, my boys are on holiday from school for the next 10 days so it seems to me that the time is right for me to take a wee holiday, not from the illness itself (I wish!) but from my job of trying to recover. For the next 10 days I’m going to try to forget that I’m ill at all, put aside all my protocols and act as if we were away in a foreign country, cut off from the normal run of things. What will this look like:

• I’m putting aside my computer as if I was leaving the office. I’ll put on an automatic reply to emails and avoid all electronic contact, including my normal social media lifelines.
• I’m taking off my heart rate monitor.
• I will eat what I want and, with the exception of vitamin D and fish oil, ditch all supplements.
• I’ll sleep as long as I want, when I want, where I want.
• My journal will not record any symptoms, thoughts or ideas about illness or recovery.
• I will banish any thoughts about illness or recovery.
• I will focus on enjoying myself, just as if I was on holiday.

By doing this, I hope to return to my ‘job’ relaxed, renewed, with a metaphorical tan prepared to embark on the next stage of my recovery. I will miss my many online friends meantime but, just as with a normal holiday, I’ll be back with my boring photos and tales of what I got up to.

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.