So sitting in the hospital bed after being told I had MS, was quite a surreal situation. The doctors all left and I sat there thinking, at least I haven’t got cancer, or a brain tumour and why didn’t I wear better pyjamas and have a blow dry. Yes, I clearly remember thinking, I need to not look like a sick person, I need to look like me again, definitely scouse girl priorities. I didn’t really know what MS was, I was completely ignorant to what it meant for people who had the disease, so I opened google. Now, so many people told me “don’t google it”, which meant I did, straight away. The internet is a minefield I’ve learnt when it comes to MS, and still I only remember the scary facts about wheelchairs and people being bed bound…I lay there thinking “yup I probably shouldn’t have googled that should I”…hindsight is a wonderful thing.
I was now able to see out of one eye and move around on a zimmer frame, but as I was still in the midst of what is known in the MS world as a relapse, I wasn’t feeling too great. A relapse is where my body just starts attacking my brain and eating away at the coating on all the little wires in my nervous system. Basically the bit of your brain that controls everything you do. Which left it inflamed and made it harder for brain signals to pass through (the amateur Sinclair description sorry!). Yup my body had gone into rebel mode and was attacking the optic nerves in my eyes, giving me severe vertigo (not a great combo when your half blind and walking like 90+ year old let me tell you), making the right side of my body very weak and numb and giving me this brain fog that meant I couldn’t remember everyday words (now this could be down to my ditzy genes …so the jury is still out on this one), but despite all of this, I actually felt relieved. I now knew what I was dealing with and was determined from this moment on that I would find out how to treat it, how to get my life back on track as quickly as possible and ultimately “get on with it” with not a trace of feeling sorry for myself or any room for moping allowed. I 100% believe that having a positive attitude and focusing on the positives has helped me stay sane!
I didn’t call anyone straight away…having to tell your family that you’ve been diagnosed with an incurable disease was nowhere to be found in the “handbook on life” I thought I knew back to front. I’m a fiercely independent person, so I almost felt like I was becoming a burden on the people that loved me by just being diagnosed. Hard one to explain that, but one thing I’ve learnt since my diagnosis is that I sometimes have these irrational fears pop up in my head, and if anyone else who has MS can relate to them, then hopefully I’ll sound a little less crazy sharing them!
That night I lay in the hospital bed, that had become my home for 2 months now. I need to set the scene here, I had an extra wardrobe, more cards, presents, balloons that I was told they had ever seen on a bed, and was referred to as the Queen of the ward, so suffice to say I had definitely made myself at home. I still couldn’t sleep and was still googling facts which made me start thinking of what kind of funeral I wanted, when I must have finally managed to doze off. About an hour later, I opened my good eye and seen the figure of what I thought was an angel wearing a white gown at the bottom of my bed (please remember I was high on drugs!), she was stroking my feet but I couldn’t feel anything (they were still numb!) and I was like “holy shit, my time is up here, Angel Gabriel has come for me him/herself!”…20 seconds later the lights on the ward get switched on and there is Madge, aged 85, sleepwalking in her nightie trying to take my socks off… life has a funny way of making you laugh when you need it most!
I was introduced to my MS nurse the day after my diagnosis, it’s a support service to help you deal with symptoms, treatments and the daily worries living with MS throws at you. She explained that everyone’s MS is different and I may not have another relapse for years and years. Unfortunately, in the true dramatic “always a bit different” theme of my life, I’ve had 4 relapses in under a year, my MS is called Relapse Remitting MS (RRMS), it is highly active but not yet debilitating, but I need to get it under control. There are things called Disease Modifying Therapies (DMTs) which are the only drugs we have, to try and reduce the relapse rate. (I’ll do a completely new post on what I have learnt about DMT’s and the approach I took to get the one I wanted…) unfortunately the DMT treatment plan hasn’t worked for me, and made me pretty sick, but there are other options out there and I’m currently on an Annika Rice mission/challenge to get the best one for me.
After my diagnosis with MS, I felt very isolated and lonely. I put on a brave face, but if I’m being totally honest with myself, I felt like my world was spiralling out of control…. I was surrounded by the most amazing family and friends, but I just felt no one really understood how I was feeling. This wasn’t their fault, and I was probably a right pain in the ass to deal with looking back, because people would ask me so many questions, yet I was still learning myself so I’d get frustrated. I also had now progressed to crutches and an eye patch so resembled a bedraggled drunk pirate, minus the parrot. But despite all of this, I never stopped being thankful for how lucky I was, I was completely overwhelmed by how amazing my family and friends had been, it literally it blew me away and kept me going.
I made myself a promise that first few days after being diagnosed, which was to use this situation to try and help others, I didn’t know how or even if I could be of any help but I knew that I needed to use the energy I had to create something positive. I didn’t want anyone newly diagnosed to feel the isolation I felt, and through social media/friends I have been able to connect with people newly diagnosed and become a sounding block for the zillions of questions and worries they have, which I did. I’m by no means an expert on MS, but if anyone wants to talk to someone who may understand a little better, then I will always be all ears! It’s taken a lot of thinking to launch these blog posts, but since posting yesterday the support, messages, shares and comments has been incredible. I am completely overwhelmed and humbled, but most of all so damn happy that people are reading about MS from a real perspective. I have had messages from people with MS telling me how it has spurred them on reading the blog, to people who now understand a little bit better what MS is like for people they know who are suffering…I have even had a couple of messages from people who are not very well but now more aware of the symptoms and are going to speak to their doctors about MS. All it takes is small steps to make a big difference and for every single person who has supported my post since yesterday I thank you from the bottom of my heart for helping to make a difference. God I sound so cheesy so I will stop now and stop waffling on!
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