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Talking to people about MS

Hello everyone,

ive been reading lots of posts recently so thought I’d put up a little update and maybe get some advice! For my full story so far see my previous posts!

I’m still not diagnosed, I have had my 2nd MRI and just waiting for a neurology appointment now with the results! I am 99% sure the diagnosis will be confirmed when I eventually get to see the neurologist!

My double vision has now almost 100% resolved, I am back at work after 6 weeks off sick and I’m so happy to be driving again and getting my life back to some sort of normal! I got married last month, I still had double vision on the day unfortunately but I managed to pretty much ignore it and had an amazing wedding day and honeymoon!

So right now I’m feeling good,I have no symptoms and I hope this continues for as long as possible! I am feeling tired from getting back into the routine of working long hours and shifts but I don’t think this is MS related fatigue (how do you tell the difference??) Just the nagging anxiety in the back of my head and ongoing uncertainty regarding and MS diagnosis!

The trouble is other people! Of course my work colleagues want to know why I was off sick and my friends want to know what caused my double vision which now seems to have resolved as quickly as it started. I want to be open with people about his illness (something I’m really not good at) but I haven’t been brave enough to tell a lot of my close friends yet, I just keep telling them I’m waiting for the results of my MRI scan. But I’ve been testing the waters with my colleagues and I have told a few people at work that I’m being investigated for MS. Their reaction has been pretty awful to be honest! Most people respond with a look of horro and an “oh my goodness that’s awful, I’m so sorry!” kind of response which in all honesty isn’t that helpful! It makes me even more worried about telling people close to me! It probably doesn’t help that I’m a nurse and the people we encounter in hospitals with MS usually tend to be the extreme and more advanced cases - as nurses we see people at their worst, we don’t see them going about their everyday lives and managing as normal!

I am trying to stay positive about my future, and for the most part I am managing apart from the nagging anxiety that I try to ignore (maybe I’m in denial?). I guess it’s easier to be positive and forget about this disease when I don’t have any symptoms! I don’t want sympathy, I just want to be treated as normal as possible for as long as possible, and have people around me to rely on in the times I do need support! My husband, parents, siblings, mother and father in law my best friend all know what’s going on and have been amazing so I’m guess I’m lucky that I already have an amazing support network!

So really I’m just wondering if anyone has any advice on telling people about MS and talking about it? I obviously don’t want to downplay the significance of a diagnosis and what it could mean for my life as I’m aware it has a huge impact on everything, but I would just like to spread a bit of positivity, for my own mental health and also everyone else’s!

Thanks for reading what turned out to be a much longer post than expected!!

I hope everyone is coping well in this heatwave!!