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:

 

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:

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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

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!

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.

Ten Top Tips To Try

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I’ve heard the process of recovery compared to the progress of the first rocket to the moon which was only on track for 2% of the time. 98% of the time it was making adjustments. Those adjustments are how we look after ourselves.

The incomparable Toni Bernhard, whose writing you can read here, suggested that we ask ourselves a deceptively simple question: What can I do best now to care for myself? I’ve asked myself that question repeatedly, especially when I know I’m veering off a healthy path. One such time was last night and here are the ten thoughts that came immediately to mind:

1. Limit screen time. I’m such a hypocrite, forever lecturing my children about the perils of such while doing the same myself. It’s not difficult to understand why this is. Particularly when I’m exhausted, my brain screams at me to be entertained and stimulated. Television, Twitter, blogs etc. provide this instantly no matter how flat you need to lie in bed. This creates further exhaustion, boredom and, on occasion, distress.
2. Persist with this blog. It’s both a creative outlet and a method of charting my thoughts and progress that I can look back on. I also hope it’s of use to other folk who might be in a similar position.
3. Keep additional commitments/activities to a minimum and have days where there are none. Under-estimate my capabilities. This week I had visits on three consecutive days, each hugely enjoyable but took a cumulative toll.
4. Ingrain extended daily relaxation practices. These sessions have multiple benefits and, as I’ve said before, are the key tools in my self-repair kit.
5. Stop fretting about events outwith my control. Specifically, the fact that my house refuses to sell.
6. Continue juicing vegetables. I’ve been making a concoction consisting of spinach, celery, cucumber, green apple, lime and ginger. It’s a bit of an acquired taste but I know the concentrated micronutrient content will aid my recovery.
7. Don’t allow myself to become overwhelmed and consumed by the behaviour/reactions of other people. I need to target my energy for healing.
8. Simplify life in every way possible. Have shopping delivered, children help with household tasks, accept that good enough is, well, good enough.
9. Try some gentle stretching. My body can’t cope with much physical activity yet but keeping mobile is important too.
10. Get to sleep at a reasonable hour. Sleep a long, soft sleep and wake refreshed.

I daresay that list will be different the next time I ask myself the question. What would you list right now as the key elements that allow you to live a more comfortable life and/or promote recovery?