Don’t let the ominous title fool you. I am strong, even if my body isn’t.
Today marks 7 years since my MS diagnosis. I recently re-read my 6-year anniversary blog post, and a lot of it still applies. So why bother writing another one if not much has changed? This isn’t just because I promised to write more and it’s a good excuse (although that is true). It’s because I live my life in it. I am not going to lie, every day is a struggle in one way or another, and this is a way to remind people. Despite what some may tell you, I do not wish to be the centre of the universe. I just want to remind you, reader, that we are here, and are sometimes drowning quietly on your peripherals. We are only human. We cannot fight every fight and notice everything. I don’t expect that.
I’d like to take you through a typical day. Just to highlight the thought processes that may play on a disabled person’s mind.
- Whether I have had a fantastic night sleep or not, I am exhausted when I wake up. The kind of drained you get when you haven’t slept for 3 days.
- My legs get horribly stiff during the night. I need to gradually get them going in the morning by stretching and slowly getting out of bed.
- The decision whether or not to shower is genuinely a hard one. I’m really slow, and getting in and out is very difficult. I have to carefully (using the sink for balance) get my left leg into the bath. I then need to use one arm to steady myself while I use the other to get my right leg into the shower. I only shower for 5 or so minutes because that’s how long I can stand; even then I use the walls for balance
- To get out, I repeat step 3, but in reverse, while soggy and slippery, with bad balance, and without glasses.
- Next, I use the walls to get back to the bedroom while trying to keep a towel around me.
Ughh. You know where I’m coming from. I won’t bother with the rest of the day! But hopefully you can see what I mean. The things I used to take for granted, that come naturally to others, take almost military planning to achieve. No wonder I’m always exhausted!
The tone of this post is decidedly different to my 6th anniversary version. This is not only intentional, but needed I feel. The idea someone such as me is happy with their lot, that they do not wish to regain what they have lost, may not be 100% true (I have said this before). Would I go back to being able to walk down the street (or just to the end of my garden) without additional help? Of course! Without hesitation. My only stipulation is I would not want to lose the insight I have gained over the past 7 years. Disability was never in my mind. Simply, I didn’t know anyone disabled. Now I am that person. I see the world from a whole new angle (usually lower, from my wheelchair). And some of it is not very nice, but most of it is people just trying to help.
So, what would I like you to take away from this? Last year’s blog still applies, but happiness can come in peaks and troughs. I have struggled with my mental health this year. Not only because I have a chronic condition, but the realisation of how much that condition affects others. The people I love the most.
Of course, it isn’t all doom and gloom, but I’ve always wanted to tell it as it is. And I do. Please enjoy everything you have, appreciate what you may have lost, but don’t let it own you or get you down. The world is a varied place, and we never know where we may end up next.