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

Holiday

Standard

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.

Three Days In The Life

Standard

May 12th marks Florence Nightingale’s birthday. It is suspected that she suffered from an illness akin to mine and thus is the day chosen to raise awareness of this most mysterious, relentless and life crushing condition: Myalgic Encephalomyelitis, sometimes known as Chronic Fatigue Syndrome or Post Viral Fatigue Syndrome. My contribution is an intensely personal one: to share the following three entries from my journal with a view to affording non-sufferers a glimpse of what life is like. The context in which these entries are set is the struggle to get from day to day and, in particular, to fulfill my family and work commitments while feeling my strength ebb away and symptoms proliferate.

Tuesday 26th February 2013

‘Oh dear. It is not good just now, not good at all. Over the weekend I had hellish, excruciatingly painful bouts of diarrhoea. Still soft this morning. Symptoms are running very high. Hyperventilation and head swimming, exhausted and uncomfortable, aching. Didn’t sleep well last night and am now in bed at 6.30pm. Meditation during the day is almost like the desperate act of someone drowning. So busy at work but achieving so much less because I’m so debilitated. Just now, head is swirling and neck, shoulders and back ache terribly. No assistants in tomorrow–yippee! Just keep going!

Monday 18th March 2013

‘There are only so many synonyms to describe how truly awful this is. I think on top of all else I’m developing a bout of sinusitis. Head so sore today, vision dissociated, tic in left eye. Did virtually no work. Aching, exhausted and now starting to feel low, bitter and sad. This spell has dragged on since January. I’d challenge anyone to withstand this. I haven’t had a single day recently that hasn’t had either grinding misery or acute scary spells. Over the weekend I did precisely nothing other than read, watch Ashes to Ashes or pick mum up. Yet I still feel so ill. So very, very fed up of this. No escape route anywhere. Life loses its joy, colour, texture and I turn into a blob. It is so difficult to perceive managing again, to feeling capable, jolly, accepting. In truth, being ill every single day really is taxing me to the very limit. Quiet frustration indeed. I have no vitality, I find it impossible to go with the flow; I’m ill, fatigued, helpless and hopeless. Yet tomorrow I must get up and do it again. Perhaps the best way is to be unthinking–the opposite of mindful–because being mindful of how I feel is simply amplifying it. Also, my craving for junk food is back with a vengeance. The crappier I feel, the more I want to eat crap food—ach, this too will pass, this too will pass….’

Friday 7th June 2013

‘It would be an understatement to say that the last few days have been difficult. On Tuesday I had no flu symptoms and managed the whole day at work by pushing it. On Wednesday, just felt really unwell, masses of symptoms so much so I said to my boss at lunchtime that I had to go home. Was wired and tired, couldn’t rest and got very little sleep. Stayed in bed and worked there on Thursday morning then went into work at 12.40. My sister drove me to the train station and I got a taxi from Haymarket to work to conserve energy. Had meetings before my committee meeting. Went to the committee room where it was incredibly warm which I think was the last straw. Within a relatively short time I felt very uncomfortable: hot, heart racing, palpitations, aching chest wishing that the meeting would be over quickly so I could escape. After a few minutes it became unbearable; thought I was going to pass out so I made my excuses and left. I ran cold water on my wrists and lay down. I had a full blown acute episode which refused to subside. Every time I sat up, the world swayed. I’d permanent burping, rigors and feelings of alarm. After a couple of hours an ambulance was called and we went to Edinburgh Royal. Got lots of sympathy for having ME but not one person knew what to do. In fact, the A&E doc asked me! Advised her–rest only. ECG was fine, BP 166/90, HR high, temp 38.5. Classic signs of my nervous system cracking up. This episode was so long–must have been from just after 3 until after 5 before it subsided, maybe even later. It was absolutely, deeply, horribly unpleasant and scared my work colleagues too. And then the saddest thing of all today. I missed Eilidh’s graduation. I got up and got dressed but that effort sent my heart rate soaring. I couldn’t risk having another episode at her school so packed Eilidh off, alone, in a taxi. Wept about it. For the next few days I won’t be far from bed–clear I need lots of rest.’

I haven’t been far from bed since. I didn’t make it back to my work. The struggle continues.

For more information, stories and poems: May12thBlogBomb