Q2 2022 – Now, then!

View from the terrace of La Soldanelle, Chateaux d'Oex, June 2022 - temperature around 31degs! 

So my previous blog, 3 months ago, told the sorry tale of stuff like “2022 is now a quarter over, and it has been a total write-off, a once-in-20-years disaster, there are no other words to describe it. “

-       Was I exaggerating? No, I was not.. 

But, in the past 3 months, things have changed so much, & I am astonished.

Remember: Between January & the end of March, I had about 2 “good” days per month. I lost my job at DecodeME ("gutted" does not even begin to describe it). (right decision:  I remained very unwell for a good six weeks after leaving the project at end Feb).

Now – it’s 1-2 “bad” days per month. And the turnaround came at Easter-ish, & was rapid. My sister visited & I overdid it (café visit, some driving, browsing a shop) – and I suffered a 36-hour crash, the worst of which was awful – brain fog, etc. She then drove me to Newcastle to visit a relative, & I was super nervous about the whole thing. But 2 days later, on our return, I felt …. different. The stressors that had caused bad, bad days in the weeks previously (you know – standing up, talking too much, driving, overdoing the TV / laptop etc) weren’t causing any symptoms. 

By mid-May I risked a trip to see a mate in the Lakes. I walked “up” a “slope” to a small lake. It wasn’t even very pretty. I felt OK, not perfect, but the experience was enriching. On the drive back I felt ecstatic, & visited Carlisle, & some shops, & the Tweedsmuir hills (just to look at). Oops.  

2 days later I had a pretty bad day, & I was gutted.

But the next bad day wasn’t until over a month later, caused by a serious heatwave (& a longgg, tricky travel day to Geneva) (28degs at night!). I bounced back from this and enjoyed the final 2-3 days of the trip, ongoing heatwave notwithstanding. The journey back was as bad, but this time – no crash…. Hmmm …..

Early June, I saw a private Cardiologist on recommendation, Sanjay Gupta at York Cardiology, as my PoTS-like symptoms (tachycardia on standing) were generally bad, and probably worse by April than the CFS like symptoms / exertion intolerance (not that I was/am pushing the exertion!).  He diagnosed me with “Postviral Dysautonomia”, a diagnosis I agree with, though I do still have an element / risk of CFS / PEM.

He agreed to start me on low dose drugs to control my heart rate – not beta blockers, but ivabradine. Not sure how much this is helping, but I’ll take it.

I feel well all day nearly everyday now, and zero symptoms (apart from racing heart on standing if I’ve been drinking alcohol).  No fog – no stomach issues, no brain “wrong” / excess fatigue (except on those rare bad days).  Zero symptoms, for me, has to be the starting point.

Three weeks ago, sadly a musician friend had passed away, and I made the rather risky trip to Bristol for his funeral.  But I had a very good week (despite the sad original reason for being there), catching up with many friends & even making some new ones. I’d not been back since moving my entire life north of the border over a year ago. It was lovely to be back.  I felt fine the whole trip. 100%; really. 

I re-evaluate my lifestyle – I have no wish to return to cut throat competitions, I was racing sooooo hard last year (18:19 5km, anyone? Or 85:33 Half marathon?) (plus flat out intense British Sprint relays orienteering – gold in relay, 5^th in individual).  instead, I want to enjoy feeling well, and the outdoors, and walks. I feel easy climbing might be a first step, but 2022 is a fallow year (if I’m lucky), and no desire for “winning” until I’m 60, I reckon (or never!).  

So: where from here? Where do I go? Nowhere. I am loving living in the present, and am not making plans. To feel well is the best "gift" of all. I will never take it for granted again, and I shall not risk it all again for some local parkrun in a rather slow time. 

Also, I've been increasing my activities gently, using a heart rate strap/Garmin watch, and have gone from walking for 10 minutes, to over an hour, with no issues. Cycling is not possible as my HR goes too high for comfort. Indoor climbing I've done once - bouldering - and it was a success & vastly less stressful for my heart than 10 mins on a bike. I reiterate, as always, I'm not feeling better because I'm doing more: I'm doing more because I *already* feel better - very important distinction). (no GET here). So I am rehabbing myself.  Says the man who doesn't agree with Rehab programs for ME/cfs / LC ..... you probably have worked out why. 

Hello, old friend: life…  

Postscript: The big question has to be: why do some people (me!) recover (given a chance - #StopRestPace; #DoLessFeelBetter) from postviral-tyle “CFS”/M.E. type illnesses, and others do not? Does medicine care about such details?  I am baffled as to my improvement. Sure: I know when to quit, and it seems to work for me – but not others – and that’s a mystery that needs unravelling….. 

May 2022 - The Filter House , near Patterdale - finding my happy spot, amazed to feel so well, above a small "house" a friend is renovating. We ate, drank wine & ... both went to bed super early! Not much to do up there! 

Great to catch up with Mike of Mike's EU Marathons while in Bristol. He was about to leave for Liechtenstein .... where he did his toughest marathon yet! Amazing! 

Great to meet Ange again after wayyyyy too long! - she still thinks I'm some sort of running hero, even though I can no longer run at all (& certainly can't do 5km at her pace these days!) (18:51!). 

June 2022 - near Gstaad with sister - short walk around lake with rests / picnic in shade.