Over the last few weeks I have been battling through one of the most difficult times I have ever encountered in my life. About 5 weeks ago I started a new Multiple Sclerosis relapse, which, although difficult at the time, was nowhere near as bad as it was going to get both mentally and physically. As the days of February went on, things slowly and gradually started to hurt more and work less and as we approached easily one of the most stressful things I have ever had to deal with, my PIP Tribunal (the stress of which I honestly believe triggered the severity of this relapse) my legs worked less and less and mentally, it was all getting to me a hell of a lot more than I was letting on.
On the 22nd February we left by taxi to get to the train station, the walk to the platform was agonising, my crutches made everything worse pain wise but saved me, just barely from falling when I lost balance. Then came the climb onto the train, it didn’t go well, I fell on, hurting my ankle, my knee and my forearm, not to mention bruising me ego beyond repair, the tears started flowing and now I was even more worried about how the day was going to go, how could I concentrate on their questions and my answers when I was in so much pain and such a panic? It got even worse when we got off the train and started the walk round the corner to the Law Courts, the 9 minute walk took us 45 minutes and about halfway there I started passing out and I cried basically the entire walk, at this point I was so angry that I was being forced into this painful and distressing situation to prove that I was really disabled. I’d spent the last 4 years trying to prove to doctors that something was wrong with me and now that I had the medical proof I was having to prove it to the welfare system too. We just made it to the court on time and I struggled through it all but we did it, we won and a wave of relief flowed through me and even though the journey home was just as horrifying and painful, the relief of it being over made it easier to deal with.
At this point, I was stupid enough to believe that the stress was gone (it wasn’t) and that the relapse would taper off (it didn’t). 2 days later, I woke up and my legs wouldn’t work at all, I couldn’t lift my legs slightly or even wiggle my toes, my arms and hands just barely worked and when it came to my right arm it really was just barely, I couldn’t feel anything from the chest down, not even pressure and I was so wobbly, off balance and uncoordinated, even when lying down. My depression and anxiety quickly spiralled. I couldn’t do anything at all, I couldn’t hold my phone or use the mouse or keyboard on the computer, I just lay there staring at the ceiling. I didn’t know what to do, I was sure I wasn’t supposed to go to the hospital and I wasn’t sure if this warranted steroids.
Until a few days ago, when my depression went lower than I have ever felt it before and this girl, who generally has a fear of dying and gets Death Anxiety, was screaming out, begging for it all to end! In that moment I honestly wanted to die, I felt that I wasn’t strong enough to fight through this, to live with this inability to move or do anything for myself, I felt like a useless example of a human being and a burden to my partner and son and at this point in thought I genuinely scared myself, which is good because I honestly think I scared myself straight (ish) I called me GP and my neuro nurse and advised them that I wanted Steroids (my first time) and here I am on my third day typing this post, it’s hurting and it’s difficult and I don’t know if the steroids are or will make a difference to any of it because my legs still aren’t working and I am still super wobbly but I’ll get through it. No one walked out and left me even though I honestly thought they would. Jim has been my absolute rock through this, he really stepped up and I really don’t know where I would be if I didn’t have him right now! Hopefully once I have some aids around the home I should have a little more independence and I might even be sporting a wheelchair soon, fingers crossed my PIP is actually sorted in the near future so I can sort out these things and hopefully in the next few weeks we’ll see if reducing the inflammation with the steroids changes anything or if this is permanent damage. I’m in fighter mode now and I am refusing to let this disease beat me, I’m 30 in a month and I still haven’t left enough of my weird mark on this world so I can’t give up yet!
This is just an update on where I am, why no nails or blog posts at all or even any social media activity and a thank you to those people who noticed I was missing and checked in with me, it meant so much to me!
“Courage and strength is not the absence of fear – it’s refusing to assume the role of a victim” – Anne Wafula Strike