I’m 13+ years post official dx, and am on the verge of throwing in the towel..
I was misdiagnosed for so long that I stopped work about a year later. In retrospect, that would be 10-12 years post inception of identifiable symptoms.
Have PPMS so no tell-tale relapses. Now 4+ years post-dx and whilst mobile around the house, mostly resort to a wheelchair when out.
My career as a construction project manager was not compatible with building sites! Something more sedentary for WfH or office-based and I could have extended my career.
1 Like
Yeah, all sounds familiar. Even though I’ve now got a predominantly home-based role, I struggle with travel and, particularly as the left side of my body is down to c.5% power, I can only use one hand so typing etc. is just sooooo slow! Not to mention the fatigue and time it takes to do even the most simple things.
Some days I say to myself “sod it”, but others that I should ‘try’ to keep buggering on. Just feels like I’m damned if I do or don’t…
Speaking as someone whose towel-throwing was enforced by practicality, I’d say keep going as long as you can.
I’m so bored! Brain is alive & well but body in steady decline. And I suspect the routine is doing you more good than you might realise.
I was diagnosed in 2003, and took ill health retirement in 2017. I did everything I could to avoid it happening, so for the last year possibly two years in work I was definitely sub optimal and having to work 10 times harder to hold it together. In hindsight I wish I hadn’t pushed myself so hard for those two years and had instead retired and enjoyed my retirement. I am at 8.5 on the EDSS now, so going away is probably not something I’ll ever be able to do again. I wish I’d taken the two years for myself to do some of the bucket list things rather than give the two years to my employer, I wish I’d made it to Machu Picchu rather than wasted blood sweat and tears delivering a bloody complicated project that by now Will have been replaced by something else.
1 Like
I was diagnosed at 39 and took early retirement/voluntary redundancy at 57. Nothing to do with my health, just the way the industry I was employed in was going and as I could just about afford to retire I chose to make a run for it. I don’t regret it but would have been happy carrying on working if things had been different. I’d been part time since having my son at 30, worked near to home with a blue badge for parking and had been doing the same job forever! So I had made it as easy for myself as I could and had the protection of a huge company and Union should I have needed it.
Good luck with whatever you decide to do.
1 Like
It’s a tough one. When driving and moving around is just so difficult, and you can only use one side of your body effectively…the everday task of pressing cntrl/alt/delete on my work laptop is just not possibele😔