Top of the Black Ladders – a famous winter climbing wall in Wales (by Richard Law Wikimedia)
Fifteen years ago I was diagnosed with Fibromyalgia and ME (aka Chronic Fatigue Syndrome), a debilitating condition that includes continual pain and delayed fatigue as its primary symptoms.
I often find myself trying to explain to other people what the delayed fatigue is like by giving an example that describes the degree of exhaustion I experience …
Have you ever been Winter Climbing?
Well let me tell you a tale …
Winter Climbing
Winter climbing isn’t like rock climbing. Rock climbing is a vertical ballet with a limited number of holds and a sequence of moves in between until the top is reached. The harder the climb is rated, the more limited and difficult the holds and sequence of moves become.
In winter climbing you mainly make your own handholds and footholds using ice-axes and crampons (spiked steel snow-shoes). Generally, the harder the climb is rated, the steeper the ice and the more technical and strenuous the route.
My winter climbing partner was ‘Tunni’ (1960-2014) (aka Paul Tunnicliffe by his mother). Tunni was a close friend from my student days at Bangor University where he introduced me to rock climbing. He was a Mancunian raconteur with the obligatory dry wit and wry observational humour of that tribe. When he recently passed away, his son gave me his climbing diary, in which he had meticulously logged all the 568 rock and winter ice climbs he had done between 1984 and 1997.
Ysgolion Duon “The Black Ladders
The diary records that on the 10th of February 1996 we set off to climb ‘Eastern Gully’, a Winter Grade II/III, seven hundred foot climb, on Ysgolion Duon (the Black Ladders), a thousand foot high north facing cliff that sits in the most remote part of the 200 square kilometre Carneddi mountain range in Snowdonia, North Wales.
The Carneddi Massif: Blue indicates access footpath. Red indicates cliff location. The black at the bottom of the red marker is the shadow cast by the cliff and is not a lake unlike the other dark patches
The route itself climbs the eastern section of the cliff, rising in a diagonal slash from the centre of the Eastern buttress to the top left of the cliff midway along the ridge that runs between Carnedd Llewelyn (3500 ft) and Carnedd Dafydd (3050 ft). The route consists of 700 ft of climbing proper and a further 300 ft of ‘scrambling’. It needs 3 days of sub-zero temperatures to come into condition for good ice.
Eastern Gully Route
Over the previous 3 years Tunni and I had climbed several ‘classic’ 1000 foot winter routes, and for the last couple of years he’d had his eye on Eastern Gully, with just the lack of snow and ice precluding a winter ascent of the route.
I had spent the previous night at his home preparing our equipment and spare clothes. In 1996 neither of us had a mobile phone. Our failsafe consisted of leaving a route-plan with Tunni’s wife and the instruction, ‘not to worry until mid-night’.
The morning had turned out a perfect day for winter ice climbing:, freezing cold and clear with a fresh overnight snowfall. So at 8.00 am in the post-dawn light we set off from the nearest car-park and into the fresh virgin snow in splendid isolation. The guide book says the walk-in to the foot of the route takes about two hours. When the footpath is hidden beneath knee deep snow it can take twice as long, and we found ourselves at the start of the route shortly after 12.00 noon.
Have no illusions that this sort of outing is ‘a walk in the National Park’. It is a serious undertaking, with no safety net and no easy way out should an accident happen, and we were both acutely aware of the freak winter climbing accident in the mid-eighties that had claimed the life of a friend, Mark Pither, when an ice slab he was resting on collapsed underneath him after he had completed a route adjacent to the one we were doing.
We wanted to be at the top of the climb at least an hour before sundown at 5.00 pm to give us time to complete the descent back to the start of the route before nightfall, and we anticipated having to make the walk out of the cwm and back to the car in darkness, using head-torches. This would give us three hours to complete the climb.
Half an hour later we were properly equipped with crampons strapped to our feet, rucksacks on our backs, ice-axes in hand and a rope uncoiled. The first pitch was a 150 ft frozen waterfall, in perfect condition. The start was a vertical wall of ice 50 feet high that then relented to a 60 degree slope, allowing for a belay at the top of the pitch.
Ice Axe – from Wikimedia – Amada44
Tunni led, placing ice-screws into the ice-wall every 20 feet and running the rope through the karabiners clipped into the ice-screws, so that I could catch him and arrest his fall should he slip or become detached from the ice. After he completed the first pitch, I followed, unclipping the rope and removing the ice screws as I climbed until I joined him on the ledge that he had belayed from, only to find that the 150 ft pitch had used all the available rope and Tunni was using the infamous ‘psychological belay’. In other words: ‘unsecured and imaginary’.
Above us the second pitch and the gully proper started: a deep cleft rising at an angle of 45 to 60 degrees for 200 feet. The guidebook said, ‘follow the central depression to the fork’. We set off together, moving un-roped as the gully looked like easy ground.
The snowfall from the previous night was knee deep as we started and gave a reasonable purchase as we stamped our way upward. However, we found that the snow was hiding a complete absence of ice, which, counter-intuitively, made progress difficult.
Crampons are marvelous for walking on ice or for ‘front-pointing’ up vertical ice using the two prongs that jut from the front, but when walking or climbing on dry rock they can be more of a hindrance than a help. The higher we went, the deeper the snow became, and when we reached the fork at the top of the second pitch, it was up to our waists.
The guidebook says of the third pitch (300 ft), ’The right-hand exit is steeper and probably better’.
The first part of that description was correct. The second part wasn’t. There was still no ice worthy of taking crampon points and the snow was getting deeper. We were taking turns to lead, using the scooping blade on the ice-axes to cut our way through snowdrifts and to compact the snow beneath our feet. Progress forward was more akin to clearing and stamping snow than climbing ice.
At about 200 ft up the third pitch, the snow had reached shoulder height and the walls of the gully narrowed to about six feet as we reached an impasse in the form of a rock boulder blocking the gully. This presented us with a sheer ten-foot blank wall of granite, topped with a six foot bank of snow. We compacted the snow at our feet and used the rucksacks to make stable footing.
Crampon (from Canadian glacier climber)
Tunni removed a crampon so that he could stand on my shoulder and brace himself against the gully wall with his cramponed foot, allowing him to use his ice-axe for clearing the snow-bank covering the boulder.
This resulted in the cleared snow cascading down upon us. Eventually he thrutched and squirmed himself onto the top of the boulder. Rucksacks were hauled up by rope, as was I, and we laboured up the remaining snow-filled gully to the summit of the climb and the spectacle of a waxing moon rising on the horizon.
Our three-hour climb had taken nearly five hours.
I then made a grave error. Unlike Tunni, who had reached the summit a few minutes before me, I didn’t change into a dry set of thermal underclothes. Time was of the essence as we were benighted and a biting wind had blown up, along with the first flurries of that night’s snow. We set off down the descent route into the dark, head-torches illuminating a twenty-foot circle of the space below us with an increasing number of snowflakes tumbling in the light-beams.
In the fresh snow it took nearly two hours to reach the foot of the climb, where another three-to-four hour walk to the car awaited. At least we knew where the footpath went.
I was utterly exhausted from the physical efforts of the day and I hadn’t realised that the cotton underclothing I was wearing was soaked through. A combination of sweat from the physical effort of the climb and the copious amounts of water from the snow showered over me during the boulder-in-the-gully incident had seeped through my clothes and my padded mountain jacket.
The heat from my body core was draining away and the sub-zero wind chill was not helping. Tunni walked ahead of me breaking a path and I followed, using his footsteps to make each step I took easier. By the time we reached the mouth of the cwm, I was flailing and failing. Each step required a Herculean effort and I was falling further and further behind.
I remember thinking that I would sit down and rest for a couple of minutes to recover myself. Even as I lay back into the snowdrift, I realized that if I didn’t get up, there and then I would simply fall asleep and die of exposure, and at this juncture my resolve was overcome by a fatigue that went beyond movement and reason. I had become hypothermic. Blood wasn’t reaching my legs, arms, or brain. I was drifting into that blissful state between waking and sleep.
My brain was shutting down and I didn’t care …
All I recall of the remainder of that day is a dim memory of being hauled to my feet and half-carried the remainder of the way to the car; sometime later standing in front of a roaring fire whilst being plied with large mugs of hot tea; and a long hot bath to gently re-heat my body core back to normal.
That’s what friends are for.
They save your life.
And now, in 2019, I get to feel like this whenever I do more than I’m capable of; like walking upstairs or having a bath.
And when I’m asked, ‘How fatigued are you’?
Well, this is my measure.
Paul Tunnicliffe – Diary entry for 10 Feb 1996
“Winter Climb. Black Ladders. Eastern Gully with Simon, Loads of snow. Walk-in took 4 hours! v.knackered. climb took over 4 hours. so much banked up powder the climb was hard to start, even. Si had a couple of new screws & pegs and I got placements on the first bit and belayed on the lip with no rope left. Snow in the gully proper a bit dodgy looking and loose(ish) and we ‘daggered’ about 90% of it. 5.00pm top out and v.exhausting walk out mainly with head-torches during which I lost the spare battery and Swiss army knife and Simon had an epic! A good day.”
Dedicated to Paul ‘Tunni’ Tunnicliffe and Mark Pither
Simon Parker is now 62 years old. He lives in rural Anglesey, North Wales. His story:
Simon Parker
In 2000 I was completing my PhD in Pedagogy at Bangor University North Wales and enjoying an active outdoor lifestyle, when I caught a bout of flu that resulted in increasing periods of debilitating fatigue and pain after exercising. I was diagnosed in 2003 with fibromyalgia and ME/CFS.
When I was first diagnosed I underwent the procedures recommended by my local ME/pain clinic (CBT & GET) who advised me to ‘exercise to my full capacity as the condition is temporary’ – a course of action which only made my symptoms worsen.
Luckily I found a ME/CFS consultant (Dr Sarah Myhill) whose tests and approach (leaky gut, PK diet, and mitochondrial functioning, etc.) made a huge difference in understanding the condition and in taking appropriate steps to mitigate the worst of the symptoms.
My symptoms have increased in severity over time and I now spend about 80% of my time in bed and the remaining 20% of my time trying not to over-exert myself while making time-lapse videos of blossoming trees in my locale each Spring.
I still (literally) dream of going climbing and live in hope that the current research avenues will one day lead to a cure or at the least an alleviation of the symptoms so that I could go rock climbing again with my son.
Thank you for sharing your story, Simon. I appreciated it! I miss backpacking and hiking (not brave enough for climbing, though my husband does some.) Oh, I did have a failed climb attempt at Mt. Shasta, near my old home in northern California. We used our crampons briefly, ended up on the wrong ridge, then weather settled in on the mountain top, sending us back down. I always assumed I would go up again, as did my climbing partners years later….
Your example of what fatigue is for you now is excellently written. May the cure come soon for all of us who miss being in the glorious out of doors, conquering great heights and enjoying splendid views.
Was doing a road trip one day and spied mount Shasta in the distance and decided I would head up the next day with my mate who I was traveling with…… plenty of mountain experience but did not even look up any info on this one….. just woke up, drove into a forest and started walking ! It was a fantastic day out and a real adventure as what I had taken to be snow patches turned out to be glaciers and the surfer springs were another surprise! It’s a long old haul up but what a fantastic run down ! Just running at full speed for what felt like ever ! I was diagnosed with CFS over 3 years ago and have been in recovery for 18 months, I can now work again most days on my property and look forward to once again doing my first hill in a very long time this summer if I continue improve…..
Colin can you share what’s made the difference for you thus far?
That’s what freedom looks like.
You don’t really know how sick you are when you are constantly wallowing in CFS or repeatedly getting jailed for 3 days after minor exertions. It is wen you get out of that jail that you realize how sick you were. And it is truly a liberating feeling when you don’t have to carefully plan everything or give up; when you are able to walk 1 km back home instead of getting marooned and wait for 20 minutes for the next one when the bus breaks down. At least that is how I felt in 2016.
Yesterday I went to skiing, for the second time this year after 11 years of hiatus. Don’t know how much price I’ll be paying in coming days, but today I’m wallowing in happy fatigue flush with endorphins. And now I’m sitting up and thinking how it is possible for anybody to be so sick for so long. And to think that my case is nothing compared to severely ill CFS patients..
How can 1 p.m. recovery. I live alone and I’ve got no family or friends to help me and just doing my shopping puts me in bed for 1 1/2 days.
Marion Andrews your situation sounds similar to mine. The only difference is I was a single parent of a five-year-old kindergartener when my symptoms he came bigger than my willpower. Grocery shopping suddenly became a Herculean task that would lay me out for days! And I think you know what I mean when I say I was laid out and could not get up and do things. It was very scary because I was alone but I was also responsible for my daughter. I spent a lot of time begging the one friend I had and one adult child that lived and worked near our home begging people on the phone to please go pick her up and bring her home because I could not drive. I could feel the loss of muscle use coming on fast. I knew that temporary muscle failure would follow. Nobody believe this is real so they feel very put out when you ask for help with your child. I’m so sorry that you’re alone. I was lucky enough to get on a program that allows me to have a part-time caregiver. They do the shopping and the main house work in my Stead. but they can’t do everything because they don’t live here. so my house is far from what I would call spotless as now there’s a teenager living in it with me. I can’t ask her for help unless it’s really important because she herself has some pretty serious orthostatic intolerance and tachycardia accompanied by fatigue that is complicating her middle school and high school life. I’m just hoping I survive until she makes it through this year as it’s her senior year. my next step is to help her get on disability because working is going to fatigue her to the point that it interferes with her job and she won’t be able to keep one with her current health condition. she also has to nap everyday after school. She can’t go places with friends or do after school activities if she has to go to school the next day because it will trigger all of her symptoms to flare up and then she misses 3 to 5 days of school while she sleeps and sleeps and sleeps. I don’t even hint at Pediatric or adolescent CFS. they can do nothing to help her if she does have that, and since nobody believes me about my own illness and think I’m just trying to get attention, it could push them over the edge bye thinking that now I’m trying to hold her back by transferring my delusions on to her.
I can only go so far as the restroom and sometimes as far as the kitchen for something to drink. Raising my sweetheart alone when I needed help so badly has put me in a mostly bedridden status now. I hope you’re able to get help somehow somewhere! I haven’t been inside of a store in years, and I don’t want that to happen to you. It just is so wrong to be left all alone and disbelieved when you desperately need help and it is not in your head.
I’m sorry.
I’m so happy to hear that you are able to work outdoors again. It gives me comfort and inspiration to read about you and others here who love, and miss, the outdoors. I’m with you.
It was a lot to read so I was skimming but it doesn’t look like there is any hope. But thanks anyway. Sorry for your pain brother.
Thank you for sharing your story. I am not a climber, but it surely describes the degree of fatigue we feel every day. Yes Denise, may the cure come soon!
As someone who might have been up there with Simon on there on the slopes if not for the interjection of ME/CFS too early (@ 20 years old), I thoroughly enjoyed Simon’s story.
It demonstrates once again that no one – no matter how fit – how determined, how “tough” – is immune from this disease. It can happen to anyone.
I’m happy that Simon has his time on the mountains and hope he will do so again at some point – albeit probably, if he gets well, on some less treacherous ones.
Anyone interested in Welsh mountain climbing and that mountain in particular can find some great photo’s here – http://welshwinterclimbs.wikifoundry.com/page/Ysgolion+Duon+%2F+The+Black+Ladders
It’s a famous and treacherous climb…Check out this description:
https://www.mountainproject.com/area/108072263/ysgolion-duon-the-black-ladders
and this one
and the “brooding mountain” one
Ha! Warthogs, bulldog ice hooks, knifeblades Sounds like fun! Warthogs by the way are specialized ice screws which Simon did not have available to him while he was climbing 🙂
Goodness Cort – I didn’t realize you were only 20 when you got sick. For some reason I had assumed you were a little older. I’m so sorry.
Simon’s story, like all of ours, is terribly sad. Although it does it give me an example I can use when I get those ridiculous questions about whether or not I’m ‘pushing myself hard enough’. It confounds me why people would think that a perfectly active person such as myself would suddenly decide to spend most of her time in bed once she hit 40, just for the hell of it. But it’s amazing how many people seem to think that might be the case!
Somehow I’ve spent about double the time with this illness than I spent healthy. (How the heck did that happen?)
Given how hard I tried to escape this illness and how many times I’ve transgressed my physical boundaries in order to do something – I don’t understand those thoughts either.
Cort , your comment regarding it can happen to anyone – no matter how fit or tought etc is so true. I was a professional athlete before I became illnin 2010. I me tioned this to Dr Rahghi ( Dr David Systroms partner at the Brighams’s Exertion Intolerance Lab recently. He commented that a disproportionate number of folks w ME/CFS we former athletes….
Isn’t that interesting. That’s kind of been my hunch. I was a big exerciser pre-ME/CFS. If I didn’t do something strenuous every day I didn’t feel right. Did you get the invasive CPET done?
Hi Cort and Simon
I live below Carnedd Dafydd and Llwellyn. I was never a climber but did walk and regularly back packed to the foot of ysgallion ddu. I knew Tunni as part of the mountain crew I was/ am friends with. So yes Cort I can attest to the fact that these folk are some of the toughest, maddest and fittest on the planet!!
Is it wrong to say that it provides me with some comfort for it to be yet again confirmed that ME has nothing to do with being lazy ( in fact the polar opposite)
All the best Simon.. I am praying for that cure along with you xx
Cool! Thanks for the on site review. Some of the photo’s of climbers on that mountain in winter are incredible. 🙂
As someone who HAS been up there, fallen ill with CFS and completely recovered, I would urge you to find a recovered person as a mentor.
Thanks Matt. I will be in touch 🙂
What did you do/where did you get treated to fully recover?
Amazing story! I cannot imagine the degree of acceptance you must have come to, go from a lifestyle like that to the CFS life you describe now. Acceptance I find is the thing I had to fight hard for. It took years to accept that I’d never be the same again, never go horseback riding or any of the other really active things I loved again. Now like you I take things day by day and hope for a cure. Your climbing account really was awesome!
My experience is that living from moment to moment and not comparing your or my life to how you or I think it should be is so important.
Thank you for this story. I could relate as I too was very physical in work and play and I loved to always be out of doors. But I really wanted to add something about acceptance and living in the moment. I learned both (to a degree) thanks to the Buddhist philosophy that was my saving grace when I first became ill and was really struggling to cope.
I stumbled across a book titled, How to Be Sick by Toni Bernhardt. Toni was a practicing Buddhist when she became ill and Buddhism helped her to cope. I never became a Buddhist but just learning about it helped immensely.
Thank you too, Cort for your blog and forums. I’ve followed you and it for a long time. (hope this makes sense- brain fog has rolled in).
so wise Cort, this is my daily practice with accepting what is until while doing all i can with what i got and not push or strive for more in order to maintain all that i have ~ accepting what is…
Wonderful story Simon, thanks for sharing. Check out the Stanford University ME/CFS study ( https://www.omf.ngo/)… serious people doing amazing work on tiny budgets forging ahead chasing this darned illness down. So reassuring to know we have champions… have no doubt you’ll climb those Welsh mountains again – perhaps sooner than you think!
Wow, thanks for sharing Simon. You are a wonderful writer and I felt fully engaged in the story-telling. It is difficult to find words to express the fatigue that us ME sufferers feel, but you described it so well. Wishing you much energy and healing.
Thanks for your story.
I used to climb–usually relatively short climbs–, but not ice climbing because I already had a mild undiagnosed case of M.E. and my temperature regulation was off. I learned early that I couldn’t go hiking or camp out overnight in very cold weather. (Never had stamina, but I could weight lift and the non-aerobic nature of climbing worked, save for overhangs, as I didn’t have the strength for that. Hiking was more difficult, with many stops. Had I known I had M.E. I doubt I’d have done that; I’d have stuck to walks only.) However, I could go downhill skiing because the lodge would be right there when I needed to get out of the cold. So I didn’t have to give up cold weather activities altogether. I love the bracing cold… too bad it doesn’t love me.
I’m housebound now save for appointments. Forget lifting my own weight, lifting a heavy box can put me back for years now. Dreadful disease.
Thanks however for reminding what a pleasure it was to get out and take on a physical challenge.
Simon, thank you for your well written and description story. The memories of outdoor adventures and the joy of physical exertion are years past, but yes, I am still able in my dreamlife too. I remember being on the verge of hypothermia during a storm in the Tetons. The depth of the pull to give in and release into that pool of dark and rest is powerful and does describe our “fatigue “ so well. “fatigue” always makes me think we need a fainting couch!
My adult children lead very active outdoors lives and I am thrilled for them. We encourage them to do it now, while they can, knowing that there is the possibility of that ability to end abruptly.
Bless you in your journey. May we all be well soon.
Right on description of how severe this fatigue is, i was a sailor and bicyclist, besides working, and was lucky to make it to age 48 before it hit me in the course of ine overnight. Twenty eight years now housebound.
Amazing! Decades later the stories still boggle my mind! I tell you when the tide turns and the research world finally gets interested in this disease they are going to find out some fascinating things. What could turn the world upside down for such hale and hearty people?
Oh, how I enjoyed that story. It describes the fatigue so well.
I like many I lead an active life before ME/CFS. I was diagnosed at 55yo and had to stop work and the profession I loved.
However, I am blessed with about 75% recovery and at least I can lead a relatively normal life, even travel again and have a relationship.
Sure, I pace myself constantly but now I have a reserve tank so recovery is faster.
I am so sorry to read that so many are still suffering 20+ years. I was in an ME/CFS support group in Melbourne Australia where many had suffered decades too.
Cort sorry to hear you were affected at twenty I am not sure if I would have coped so young. It has been my life skills which I have been able to draw on, Yoga, Meditation, Self-awareness through all sorts of therapy and experiences the list goes on, that gave me the confidence to reach out and move forward.
It is 16 years now and still slowly improving with treatments, supplements & rest. Really it has been only in the past few years I have seen an improvement. My gauge these days is the driving, which I still find the most difficult, it completely exhausts me. Usually one hour but two max.
Gee, I only wish I could tell you what has helped. It has been a long journey trying everything out there draining my savings in the meantime.
I think in the end it’s been the alternative therapies which have made the difference, particularly Osteopathy, Acupuncture & Chinese Herbs. I am now in Thailand receiving treatment because I can’t afford them back home in OZ. I get 6 treatments here in Chaing Mai (Thailand) for the price of one in Australia.
I wish recovery was a simple procedure but I have not found it yet. I am convinced we are all different & have to find our own path through this. However, it is all about inflammation and a healthy gut, (immune system).
For me, my brain was not functioning as well as not getting the energy or nutrition from my food.
I only hope that my story has given some of you hope that you can recover or at least make small improvements.
Like all of you, the list of symptoms goes on. But concentrating on my diet and gut health was critical. Always remember to be gentle on yourself, pace and try not to compare yourself with who you were in the past and as Cort says live the moment.
Thank you for mentioning the exhaustion of driving. Though it doesn’t make sense to me, driving is a big obstacle for me too. After ten years of working with this illness I am able to hike a bit, but the eighty miles of driving to get to the Sierra trails just wipes me out. Thanks so much for the validation. Best wishes.
A tremendous comparative description of the fatigue and relapse and it’s consequences. I have copied this to my GP. He still has some of the old ideas of exercise but he is gradually coming to understand that while exercise (incl walking) helps maintain good cardiovascular health it does nothing for ME/FM – unless you have great regulatory control over the exertion. I recently went for a walk with my daughter who is a runner (12-16 Km per day, up and down hills) – very fit. We walked 4 Km and I began to suffer my usual muscle fatigue, she went back and got the car. Afterwards she said how shocked she was to see me like that. She lives in Australia (I am in NZ) and we have not walked together for 22 years (My illness duration). I am not unfit, she could see that I was not puffing and panting but in pain. When we sat in the car she could see the muscles in my legs in spasms, twitching madly, similarly in my arms. Now she really understands what this illness is like.
Fantastic description. I was diagnosed at 18 years old, at the time I was a long distance runner and very keen tennis player. Now, aged 47, I do have a great life – kids, a bit of writing, a lot of reading, some very light gardening – but sport can’t be part of my life anymore and I do miss it.
I think of M.E as that ‘hitting the wall’ moment marathon runners have – but it happens every time I over-exert myself … which could be a night out with friends, or an extra shopping trip, or a late night staying up working while the kids sleep. The same happens if I stray too far from the PK diet.
Good wishes to you all.
What’s the PK diet
Big thanks for all entries.
I was 30. Married 4 months and could not get out of bed one morning. I knew I was not paralysed but felt like it. Now 73
In the last 10 yrs have found intensive daily treatments of acupuncture reduces muscle pain and increase stamina. I go from Perth WA to Melbourne Victoria 3 times a year a flight of 4 hrs usually for 10 days.
A rather expensive multibiotic by Medilab has reduced the brain fog . My best to all fellow sufferers.
So well written, and i really relate having had ME/CFS for seven years, and was a climber before and after my illness. I really hope you can also return to the hills. Sadly I have not been able to do hard mountaineering as you describe since my illness, but I have been able to really enjoy rock climbing to the full since recovery. I spent all my summers in North Wales as a boy and know all the 3000ft hills there (in summer!). So your account really rung true to me. (I had the slowest ascent of the 3000ers in history – started with Snowdon in 1972 age 7, finished in 2007 age 43! – post-ME/CFS – what a day!). Phil (profile on UKC).
Quite a climb there Phil! :). Congrats on getting better – can you say more?
Ha ha – the climbs were all hill day walks, and done one at a time except the last 4 on the same day, the infamous “Carneddau” of which Simon writes. My recovery – you have mail! 😉 Based on rest, pacing, looking after self, support, and 7 years’ patience.
Bonjour Cort. J’aimerais faire un témoignage cependant ma langue est le Français et j’aimerais savoir si tu as le ¨Google “traducteur”. Merci
Malheureusement, le site Web ne l’a pas encore. Pensez-vous que nous devrions l’obtenir?
Claude,
Je peux traduire et j’ai un bon réseau au besoin. Cort, can you put us in direct contact?
That sounds about right. I had this point where I thought, lets see if I can work. I got myself a very light chore job with a 45 minute commute ( all standing mostly) and a 10 minute walk uphill. In retrospect it was stupid. I managed the first day, but was determined to carry on, came the next day and my best friend from uni who lived in Australia was over and was determined to show his new fianceé around London , so I went with them, Boris bikes, etc walking around London. I got home and ate and went to bed and in the morning I couldn’t move. I was in so much pain that I had to crawl to the back door to let the dog out and then I sort of forget what happened but I was back in bed.
for the rest of that week and for much of the week after. A month later I saw Dr Myhill and she confirmed that I had a physical disease, and that my mitochondria were not functioning properly. That was 2011. It is now 2019. I went into a city centre yesterday, for about an hour, I have had aching limbs and general tiredness all day. I’m writing this about 24 hours later. I doubt that they will disappear unless I stay in bed all day tomorrow aswell. Ordinary people who recharge after 6 hours just do not know how lucky they really are because this can strike down anyone.
That was a wonderful (and terrible) account, Simon. I felt like I was with you struggling up to the summit. I find it interesting that so many of us commenting have had experience with mountaineering. Those ‘peak’ experiences make the contrast of having ME/CFS all the more stark.
I myself am among you and have done routes of technical climbing during my college years plus an assent in Yosemite where I nearly got swept away in an avalanche. I also crossed the back side of the Himalayas (no technical climbing but high altitudes) and that’s where I got ‘sick.’
I had some years earlier, episodes of extended fatigue and post exertional malaise, but they had mostly gotten better–but this last time–not so much. That was in the ’90s. Of course aging isn’t helping.
I feel especially bad for all those memories of experiences not likely to be repeated. Thank you everyone for sharing. And I wish our dreams of a cure to be realized in time for all of us to benefit!
Haven’t been here for awhile – maybe just too discouraged. Thankful for my memories, too – backpacking, hiking with Sierra Club, traveling the full length of the Nile from Alexandria Egypt to Aswan, then boat to Wadi Halfa, crossing the Sahara on an old British train to Khartoum.
I am still searching for answers, but really don’t have much after 20 years of this. Too tired to sit up at main computer for long. Discouraged that researchers are not also looking at the body as a functioning unit. Many do not appreciate how the CNS functions, ie the craniosacral rhythms. Someone must explain why women are the predominate group that are diagnosed with these disorders. Especially since they have tended to have longer life spans than men and may tend to be more resilient.
Hugs, Cort, and everyone who visits here. So glad you are carrying on.
Thank you for such an interesting account of the Carneddau. I used to live in Bethesda for a while. I used to love to roam the mountaintops as well. In fact, it was after coming back from a hike that I first felt ill. Can I thank you for having the respect to include the Welsh name Ysgolion Duon, these names mean a lot to us.
One of the things I loved about Simon’s account were the wonderful names. What a rich sounding language Welsh must be.
Evocative stuff Simon.
You speak of CFS symptoms relative to your experience of hypothermia – I’d be interested in whether the breathlessness I experience is comparable to the oxygen depravation a climber feels in the death zone.
Can someone speak to that if Simon isn’t reading?
I live at a beach, and half a dozen steps on sand tells me what kind of day I’m about to have.
Simon, thanks for writing.
Cort, absolutely thanks for writing. I get more out of your site than any resource on the Internet. I’m glad you’re here.
Lee
Thanks Lee!
Wow what a story. Well told also.
So revealing how so many of us have caught a cold or flu right before onset. Same exact scenario for me.
I got cfs in 1997 after getting over a “cold” at age 34. I had to give up the little bit of mt climbing I did in northeast us. But I somehow willed myself to get in shape enough to attempt mt Washington in 2009, and made it up but almost did not make it down. The muscles in my legs were so shot from the hike up and the effect of the cfs that I almost needed ranger assistance off the mountain the last 1/2 mile. Somehow I wobbled out, having fallen at the very end but luckily landed on my back pack. I was embarrassed because I just felt people were thinking there goes one of those guys who thought this was an easy weekend climb and did nothing to prepare. What an idiot! Little did they know I had been slowly preparing for a year for this climb. The cfs was just too strong an opponent. I am 55 now and I no longer try to impose my will on this illness. That’s just a fools game. The illness forces all of us to lead a different,much slower life, but there can be great value in that as well.
What a great lesson that was Jeff and thanks for passing it on. I particularly liked this “I no longer try to impose my will on this illness”.. Wisdom indeed…
Thank you all for the lovely comments and your personal stories and accounts of dealing with ME/Fibromyalgia.
I’ve had a PEM/’crash’ week and have only just read through all the comments and I’m feeling rather overwhelmed by the responses.
I’m pleased that it resonated with those of you who lived an active lifestyle and those who know the Eryri / Snowdonia area; and for those were less active I’m pleased that it managed to convey the sense of ME/CFS PEM exhaustion.
Thank you for the compliments on the writing style. It’s my first go at writing something non-academic and the comments mean a lot to me.
I’m struck by many of the comments describing how you coped with the condition, accepting new limitations and adapting to them; (and while, for ‘outdoorsy and sporty’ types, there may be a greater relative loss of physical activity I don’t believe that there’s any difference in the feelings of loss, frustration and helplessness in the face of what, for many of us, is an appalling lack of capacity to do anything at all).
I particularly noticed things said about an attitude towards learning how to adapt to new circumstances – through reviewing, accepting and reframing past memories and experiences.
I think we can all follow medical developments in looking for a cure and understand what the current research is telling us, but we still have to deal with the lives we are living day to day; and the stories that tell about the attitudes we adopt towards the things that define our lives – (direction, despair, regret, guilt/shame, creativity, relationships … in fact most of the existential issues around self identity) – are the ones that engage and encourage me; and there are many such on this site.
Hi i found something similar didn’t know what/where/how back then!
Quacks wasn’t any use either!.
Really pushed it one day cycling as used to race and 100 miles was a warm up so to speak!.
Had been on training camp in Majorca climbing anything that came in the way with relish was feeling pretty fit did some races back in UK inc MTB and Track then later in year was out with friends on a run went for a long sprint to town sign gave it 110%? clocked 45mph on bike computer then as crossed line sat up it felt like had been smacked in the chest with something hard felt ill straight away took me a while to feel better from that but as soon as did anything felt ill HR would be high as trained with polar heart rate monitor.
in the end slowed down a lot was getting things like Raynauds which didn’t really know much about but is something that is in blood lines along with Fibro type things as sister has it plus seems some others have something like it?
I also noticed i was getting weaker from things i was finding harder to do as later when changed post to sports centre side went from before being able to pick two dumbells up with one hand to struggling with both hands picking one up it really hurt.
In the mean time i’d had a bad accident on bike broke end of elbow lots of impact injuries “30mph stopping dead more or less”
As also fell wrong as Hisided me and joints like shoulder that didn’t hit ground gave me more issues!.
But it was a sort of game changer!
Did get back to sports as played badminton pretty good but next day would feel like been run over many times back n forth!.
Cycling would be ok for a while then would notice struggling so had to leave alone in the end.
But noticed getting more weaker as had massive forearm grip&size but over the years progressively grip is weaker as get hands just seize/stop working just have to wait for them and repetitively action/motions on many muscles cause fatigue.
Walking is often very hard if not rested start walking like a duck!.
As calf muscles just call it a day.
Now days find if try just pull muscles.
Finding between Fibro/Raynauds and? that feet are a real problem as loosing/lost fat pads so can’t walk anywhere bare footed like on beach etc so have to choose footwear well/as best can.
Yet the Quacks never have an answer apart from must be in your head!(Tech speak for meaning they don’t have a squiddly idea and just not interested Paracetamol is there game)
Found a comfortable bed with real cotton bed wear one of the best as just sleep as feel need be as often it’s a few hours? then wake up “hot” maybe get up esp for toilet maybe stay up if bad then after a while back to bed as brain isn’t switched on and im dangerous then turn things on and forget! cut myself with knife trying to do something to eat as brain/hands/item are not doing the same thing!.
Takes a long while often to charge the batteries and if get too low end up getting sore mouth/ears/nose etc
I am 27 and only one year into this. So far I only have minor pains from being sedentary. I can relate to all of the comments. And my fatigue is also delayed for the most part. I can push through workouts, but I get hotter than normal. I am a former rock climber who used to hike 3 miles uphill to Taquitz Peak and then climb 5-6 pitches. I placed in a competition for indoor bouldering, and ran/yoga/climbed every day. My CFS hit me one morning like a ton of bricks. I had been vegetarian and cutting calories, possibly wearing myself down. Finally, the doctors found antibodies for Epstein-Bar virus that indicated possible reactivation of the virus. They still tell me its probably just in my head, but I have no history of depression. I get night sweats and very thirsty. I also often have a low grade fever. I am waiting on hepatitis C results and a sleep study. All of my labs are very healthy. Friends and family tell me I’m just tired. But I live my life from inside a cloud. I wake up feeling like I’ve just woken up from a year long coma. I feel like I have been dosed with NyQuil. And this feeling comes on stronger the morning after exertion. The doctor just said, “but that doesn’t make sense” and dismissed it. I also notice it gets worse if I am too inactive. I think very light exertion with extra napping is the best way to stay at equilibrium. But I still feel frustrated that I can’t workout. I sat next to some boulders today and cried for a long time. Its hard to adjust to this new life that might last forever. I’m trying to learn how to be more zen and I’m trying Qigong and Acupuncture. I would pay any amount of money to get rid of this crazy feeling. I wonder if antidepressants or anti anxiety medication would help my body fight off the virus.
Another former rock climber – good luck Merielle.