So, I was home from hospital, slowly starting to look a little bit more like me, & doing my best to ditch the crutches and eye patch. I had been signed off work for another 4 months, and had already been off for nearly 3, so I was bored, ohhh so bored. Even when I have had the worst hangover of my life, I can’t lie in bed all day, it annoys the life out of me, I have to get up and do something. … So whilst having all this time off on paper would have sounded great a few months earlier, it was doing my nut in. Everyone was in work, I couldn’t drive, I couldn’t go the gym, I couldn’t do bloody much! My internet shopping bill was going higher and higher and I was honestly considering asking if I could join the over 55’s crocheting club that I had seen advertised on the special grounds I felt like a 70 year old. I just about resisted.
Now, if you are ever going to be diagnosed with an incurable brain disease, the company I work for was definitely the best. They were, have and continue to be so supportive and amazing. Visiting me in hospital every week, presents, constant messages, the directors and managers even all made me videos on you tube to cheer me up on some of the tough days…I was very very lucky. I have spoken to some people who have been in the same situation and they haven’t been as fortunate as me. The people I work with, all started trying to understand MS so they could better support me, I just wish every company could be the same. My boss in particular knew how eager I was to get back to work, and when I asked him if I could come back a month after getting out of hospital, I’m not sure if he laughed because he thought I was mad, or because he knew somehow I would get my own way. 2 weeks later we had planned out a phased return to work, 1 day a week from home, building up slowly over the next 12 weeks. I then just had the small job of convincing my neurologist that it made sense too, that was a bit more difficult. But for me, it was a major step in the right direction.
A lot of people when they found out about my diagnosis would look at me with sad eyes and say “I’m so sorry”, and I would probably have done the same if it was the other way round. It was quite strange feeling for me, because I didn’t and still don’t think that just because I have this diagnosis, that I deserve sympathy or them “oh we are so sorry” looks. We are all dealing with a different level of sh*t somehow aren’t we, I just had another string to my bow with this.
Before my diagnosis, I knew nothing about MS, absolutely nothing. I would have skipped past newspaper articles and not given it a second thought. I don’t think I had ever seen any charity awareness or education on what the disease was. Now I see everything, I see the articles, I see the collection buckets by the tills, I see the posters, I see people walking with a stick or in a wheelchair and it makes me think. That’s the thing, until it effects you, you don’t see it.
So I was back focusing on work, and walking and being able to see (literally) and I sort of put everything to do with MS in a box and put the lid on. I was waiting for more brain scans and appointments and I just didn’t want to even think about it. I don’t advocate this approach by the way. I just didn’t know any other way. I would avoid talking about it, couldn’t relate to it and didn’t see myself as a person with MS (believe it or not, I still don’t think I’m 100% there with this one), then one day I was scrolling through the Daily Mail app and seen “Woman with MS plans to end her life at Dignitas”.
Wait there a sec, no, that can’t be right, MS? End her life? Isn’t that just for people with really serious stuff like cancer, you know, the big illnesses, the really bad ones.
At this stage, I should have kept on scrolling. But, as you’ve guessed, I didn’t.
I read the whole article, again and again. How this lady couldn’t face any more pain, how her MS had now developed in to the type of MS that deteriorates and has no treatment options (Primary Progressive MS – PPMS), and for her, being able to end her life with dignity was her only option.
I was so angry.
How can this poor women have no other options? Why isn’t there a treatment that can help her? Why!!!!!
I started googling and found so many more articles of other people with MS who had made the same decision.
I felt deflated. I think I suddenly realised how scary MS was. Would that be me? What if the only option I had was to end my life? These are things nobody should ever have to think about. My biggest worry a few months earlier had been bumping into the weird guy I went on date with, whilst I was in the Asda, (FYI – I did, and I hid in the pet food aisle for 15 mins holding a big pack of guinea pig feed in front of my face , true story).
I walked round the rest of that week in a bit of a daze. I was looking at my friends who were getting married and having kids, and was thinking, what am I actually here for? What is my purpose? Is this it? I just started reflecting on everything. I think I even contemplated buying that guinea pig to go with food. The irrational fear factor was off the scale. MS is a horrible disease and I think I had just realised how horrible it was, and that there was nothing I could do about it. Nothing. When they say there is no cure for MS. There really isn’t.
There was nothing to say I would ever be in the same position as these people, but there also wasn’t any confirmation, anyone in the world could give me, that I wouldn’t.
I was starting to realise that this MS diagnosis was a roller coaster of emotions. If anyone asked me how I was, I was always “fine”. Yet I’d be driving along and then would picture that article and suddenly be crying listening to Ed Sheeran at the lights. People must have thought I was mad. Jeez even I did.
I don’t remember how or when, but my reactions to reading something like that now, are a lot stronger. I am confident I will not be that person and always remember that none of us know what’s going to happen tomorrow, what is the point in worrying about something that may never happen? MS is not a death sentence. But, I am also realistic and now understand the severity of what Multiple Sclerosis actually can be, and that the fear of the unknown is one of the biggest battles people with MS have to face, every single day.
It this kind of realisation that has made me even more passionate about raising awareness and doing my small bit to help, and if I could offer any advice to someone who is diagnosed, it would be to not focus on the fact that you don’t have a choice when it comes to having MS, and instead concentrate on the massive, humongous list of choices you STILL can make. That’s my plan anyway.
Thanks for reading,