What do you wish more people knew about living with MS?

Simple tasks get so much more challenging. But because everything is harder, I am proud when I accomplish simple daily tasks. It's tough to explain. But you really do shift your thinking and perspective on life when you get a chronic illness.

It's good to remember, life goes on and there is always going to be good days and bad days, for everyone anywhere. This is the hand I was dealt and I will persevere :)

Cannot remember if I've already answered this, but I wish more people know of all the different symptoms, especially in the beginning, of MS, and how hard it is to actually get answers as to what is causing it!

Back in 2013, I started having simple partial, temporal lobe seizures, when I slept. The only way I knew I was having them was because I would wake up from them with a really bad sense of deja vous. I'd gone to my GP many times, asking to be referred to a neurologist, and it took a bad day in Feb 2014 to get the ball rolling. I'd woken up at my normal time, only to straight away have a seizure. My younger brother came into my room, asking if I wanted a brew, and he saw me with my head over my bedroom bin just in case I threw up. He went immediately to tell our mum, she started looking up on the NHS Symptom Checker, and that came back and said, "get to A&E!" So, brother gets sorted and sent off to school, and we go to the hospital in our town. Now, it us a minor injuries unit, but it still has an A&E service from when I was young. In triage, I had a seizure as the nurse was doing a pupil reaction test, so she gets me booked in at the bigger hospital the next town over and I got seen later that day. I think I had 4 seizures in total that morning. But, I did actually get referred to a neurologist. I got an evoked potential test, which showed the signals from my left eye to my occipital lobe being slowed by something, and then an MRI. In June 2014, I'd finished my A Levels, and was told the morning after celebratory drinks that they wanted me in for a few days. I had a lumbar puncture there, as well as started on lamotrigine. When I went back to my GP to get a repeat prescription of lamotrigine, he nearly fell over himself! Sept that year, in a follow up with my neurologist, I was told I have CIS MS. Me and mum celebrated! I was starting my Adult Nursing degree a few weeks later. I remember meeting my now soon-to-be husband in May 2015, and he helped me get stuff from my old student house to my new one. I had a seizure as we were driving along, and I said to him, after I came back to the real world, that I'd just had a seizure. So, he freaked out, because his best friend has generalised seizures, and has had them for as long as they can remember. But, I did explain they were simple partials, and he calmed down. He's seen me go from being able to walk fine by myself, to not able to go far without my stick or even my wheelchair! He's seen me where I've been unable to empty my bladder, having to have a "plastic penis" temporarily put in (a catheter). And he's now seen me move onto having generalised seizures myself! Thank god I taught him what to do, because his friend had a seizure one night, all 3 of us there walking home from the pub. I went quickly from "tipsy Charlotte" to "emergency nurse Charlotte!" 🤗 I had a generalised seizure late 2020 at home, but I wasn't worried. I was fine until I had 2 generalised seizures, one after the other, one night in April 2021, and an extensive hospital stay to have a change in my DMT.

So, I wish more people knew of our struggles to actually get diagnosed in the first place, knew how careful we need to be, knew of how awkward it is to try and keep track of changes because often they slowly build up like slowly boiling a pan of water 😢