Living Life My Way

Standard

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:

 

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 🙂

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 🙂

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:

Advertisements

Self-nurturing Ideas

Standard
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

Resistance Is Futile

Standard

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?

Save Campsie Greenbelt

Standard

10440769_796306997068982_7484699724003119841_n

As you may know, my health forced me to make some radical life changes. This time last year I was a solicitor, employed full time and living in Polmont. Now, I’m no longer working (besides being a mum!) and I moved back to my childhood village to begin the serious process of recovery to the best health I am able to achieve. Part of my thinking was to be amongst family and friends but also predominant in my thoughts was being able to enjoy peace and the spectacular natural surroundings with which the Parish of Campsie is blessed.

Imagine then my horror to learn of a proposed housing development in the fields beyond my childhood home. The picture above gives you an idea of the scale of what’s proposed. It’s a desecration of precious natural resources which, I understand, had been earmarked for woodland development.

When I was growing up, Lennoxtown had its own places of employment, principally Lennox Castle Hospital and the Kali Nailworks. The Main Street was bustling. We went down the street to Miss Wilson’s, Annie Bradley’s, Cuthberts, Kellys and Thomas’s for our messages. There was a real sense of community. The hospital and nailworks are gone and the Main Street has a sad air of abandonment despite efforts to rejuvenate it. There are few amenities in Lennoxtown besides its natural glory. But it remains a village, a community enjoying the fabulous landscape.

If this proposal is sanctioned then the character of my village will be changed to a soulless, dormitory town with no infrastructure in terms of roads, schools, shopping or leisure to support it. What about the residents next to the site? They’ve had to contend with huge flooding problems over the years. I know, I was one of them: a pond in summer, ice skating rink in winter. It is simply not a suitable area in which to site a massive housing development. And it would destroy forever the one amenity they have: the view. A desperate shame.

A petition has been formed to object to this proposal. Please read and sign it here

Sun. In Scotland. In March.

Standard

IMAG0166

If you’re thinking the photo above appears to be taken from a rather strange angle, you’d be right. I snapped this on my phone on Tuesday while lying on my back on the trampoline in my back garden. Wearing a t-shirt, feeling the sun’s warm rays melt into my skin, listening to a relaxing meditation on perfect health, watching a family of buzzards play high in the blue, blue sky. Bliss!

More than bliss, I know that it did my body good: manufacture of vitamin D, release of relaxing hormones to counteract the imbalances prevalent in my autonomic nervous system, and aiding my body to differentiate between night and day thus promoting the holiest of all holy grails: good sleep.

But my story comes with a wee warning: when the sun emerges don’t go mad on it! I went for a stroll. It lasted 25 minutes which is around 20 minutes longer than I’d managed at any time in the previous six months. It felt fine at the time and I congratulated myself on the huge progress I was making.

You know what’s coming…yesterday I woke feeling like my brain had been stolen and replaced with a bag of stones, heavy and shifting round my skull. My resting heart rate was a full 20 beats above that of the previous day. I couldn’t even lie comfortably in the sun again.

But I’m not disheartened. I think it’s healthy to push at our boundaries a wee bit from time to time to see if they’ll give a little. For now, I’m back to being very careful and sensible in the sure and certain knowledge that I’m going in the right direction.

It’s cloudy and cold outside today, so glad I had my time in the sun.

Positive Thinking? Aye Right!

Standard

Recently, someone asked me how I was doing and I responded: absolutely fine for someone with no man, career, health and in the process of an enforced sale of my home. What’s more I meant it. Because how you’re feeling can be down to your attitude of mind, how you choose to think about your situation.

This reminded me of an exchange I had had on Twitter where I had argued against the proposition that there is power in positive thinking. So, have I just contradicted my argument? Let me explore this a little further.

Thinking happens both automatically and purposely. There is a whole spectrum of thinking–negative, catastrophic, positive, realistic, optimistic, dreaming, imagining and so on. Thinking influences the way we behave, the emotions we have and how we interact with ourselves and others. Can choosing to think in a particular way influence our health, particularly our physical health?

A part of the self-help industry, built on extolling the virtues of positive thinking, would have us believe so. In one book I read it suggested that if you repeat a positive affirmation for long enough it will become true. I picked one and tried it. It was : I am strong, I am healthy, I am powerful, relax I can manage. It was a lie. I knew it was a lie, my body knew it was a lie, my mind knew it was a lie. It was false positive thinking. It didn’t have a miraculous restorative effect on my physical health. There was no power in this type of positive thinking, for me at any rate.

Then I read Danea Horn’s book Chronic Resilience in which she posited a new approach called Honest Thinking which suggests that, rather than forcing yourself to be positive, or becoming stuck in permanent negativity, you should think honestly by recognising what is true at that moment.

This resonated with me. My mind will create negative thoughts for me based on age old stories I’ve told myself. Let’s take an example: ‘I’ll never be well again’. When that thought arises unbidden I first have to notice that it’s there in among all the other chatter going on. This involves mindfulness, a subject I’ve been studying for a while. Then I have to ask myself: ‘Is that true? Is that helpful?’

For me, no it’s not true or helpful because I do not know what my prognosis is. From there, I work at replacing that thought with one that is closer to the truth. To do this involves a conversation with myself that starts with self-compassion for feeling the way that produced the thought, then moving towards an honest assessment of the moment. For me that is: I am unwell just now, I want to be well and I commit to being open to any approaches that will bring me the health I seek. Then I have to go on and take the action that supports my thinking. This has a beneficial effect on my physical health.

When you go through this process with other negative thoughts, ultimately your outlook will become more realistic, neither negative nor pretendy positive. And it allows for imaginative and creative thinking, freeing yourself from outmoded patterns.

I think, however, there is a further step that is open to us and that is to actively look for the good in any situation in which you find yourself. In my case, I’m retiring at the end of this month because of my poor health. It is not a choice I would otherwise have made but it is now my reality. I have felt the loss of my career and I daresay I will do so again but, for now, I’m choosing purposely to see and think about the good in my situation: principally, I now have time and space in which to heal, lots of which I spend with my children, being the best mum I can be.

And I believe you can go even further than this: to pay attention to, appreciate and think about just how remarkable and wonderful our world is. My last post A Picture from Polmont was about just that. Then feel grateful for all the gifts you have. I see this in action every day. The most inspirational people are often in hellish predicaments choosing gratitude over resentment, appreciation over envy, love over hatred. Too many to mention but you know who you are and I’m in your debt.

So, think freely, think honestly, think widely, think with imagination, appreciation and gratitude and you will think healthily.

This is what I think. What do you think?

A Picture from Polmont

Standard

Bf4kw8fIIAATxGE

Regular readers of my Twitter feed will be aware that I’m in the process of moving home. We’ve lived here for over 11 years and it’s been a nice place in which to bring up children but I’ve not paid it a great deal of notice.

A couple of weeks ago I was standing looking out of my boys’ bedroom window when it struck me, for the first time, just what a diverse and interesting landscape was looking back at me so I snapped the picture above on my phone.

In the very background are hills over in Fife overlooking the Forth estuary. You can just see the river glinting before the industrial magnificence of the Grangemouth refinery and petrochemical plants. Over to the right are the splendid Polmont woods guarding the suburban landscape in the foreground: lots of little, individual fiefdoms.

If you look closely, you’ll see that the sun is shining on parts, rain teeming on others and, just visible, the end of a rainbow. You may see other things that I’ve missed.

So go on, take a good look out of one of your windows today; you might be surprised at what you find!