I’ve been diagnosed with PPMS for just over a week now and I think I’ve been in denial.
Like most people with MS it took a fair bit of time to be diagnosed and I had set myself up for it, so when I was told last week by the neurologist it didn’t come as a surprise, though the PP was a bit of a shock.
Today that all changed and I’ve been feeling a bit down and anxious. I’m still fully functioning and hoping to return to work soon and try and establish a bit of normality but I’ve been worrying about the future and my abilities to continue working.
I’m 52 and work as physio assistant practitioner in an orthopaedic ward of an NHS hospital. My job is very physically demanding and I’m often under pressure to see a large list of patients and to discharge and free up beds. It’s difficult enough without the added fatigue and cogfog that I often experience, so I’m very anxious regarding my work. I have two teenage sons, one at uni and one at college and they need a lot of financial support, I just can’t afford to drop a pay band or my hours to accommodate for my MS.
I’m wondering what others’ with PPMS experience was/is like. How long could you work? How quickly did things change for you?
Hi Gman
I was diagnosed, after a long-haul, with PPMS too. I’m 54, the day job is secretarial/pa, but I’m also an Assistant Taekwon-do Instructor, and I’m working towards my second degree Black Belt.
I find high level Vit D3 helps with the cogfog, if you’re not already on it, get it prescribed at the highest amount possible, we’re coming out of winter and pretty much everyone in the UK has low Vit D levels at this time of year; having MS means we get through way more of it than others so we need to take more of it (start at, say 3,200 iU daily).
I also have oxygen therapy once a week - I don’t know if there is an MS Centre with oxygen therapy near you, but if there is, I would recommend trying it. I find that it helps keep the fatigue at bay most of the time, if I really overdo things, then fatigue can creep in a bit, but with the next oxygen session, its effects lessen rapidly.
I intend to keep working as long as possible, but how long that will be is like asking ‘how long is a piece of string?’. However, all the usual suspects like, healthy diet, moderate exercise (I think your work might count as the exercise part), and getting sufficient, quality sleep will all help.
It might be worth checking if you are eligible for Ocrevus, it could help slow down the progression.
I’m 53 with a recent diagnosis of PPMS and like you, I intend to continue working.
You have a very physical job but your employer is duty bound to make reasonable adjustments to your role so that it’s manageable. I recommend getting an appointment with your OH to get a SORA in place.
It takes us time to adjust too - we need to measure our abilities and learn not to push it too hard. This must be quite difficult for you but your colleagues will understand.
Good luck to you.
S
Peace G-man.