So I had an interesting afternoon. I went shopping for a recliner chair and a walking stick.
That’s my reality. I realised the last time I went out and did something was in July. I’d gone to a garden centre with my and I was really struggling. I struggled with my mobility and my head pain. Walking increases my pain and it can make an already bad day unbearable. It was also very hot and sunny and bright light also doesn’t help me out. We walking through a few bits, I left my mum to walk around outside and chose to wait just indoors for her. But I ended up needing to sit down on the floor. Mum finished browsing and helped me back up again. Then walking round further inside I needed to rest on a shelf. We decided to go have coffee and something to eat in the cafe to rest. Then tried to go look round a bit more with little success. They had wheelchairs available and my mum kept suggesting using one might help me be able to enjoy the time without suffering. Obviously I’m a stubborn cow so you can imagine how that idea was shot down.
I haven’t been anywhere since. I realised while on the phone to a friend this weekend that it was out of fear and anxiety. Mostly fear that my experience would be the same. Since then my mobility and general stability and stamina have decreased significantly. So fear that I’d have to leave early, fear of increasing my pain, fear of embarrassment of needing to use a wheelchair. Fear of being a fraud.
That’s a big one. I felt it today when looking at a recliner. Bare in mind that I spend 90% of my time led down as this is the only time my head in supported and so my pain is less intense. I was looking at said chair when a severely disabled old lady walked in with two sticks. I’m stood there thinking what a fraud. Because I’m not THAT disabled. But as my therapist said, I might not be THAT disabled but I am disabled.
There’s also the other conflicting feelings such as am I enabling my disability. By using walking aids to try and make things easier, will that in turn make me worse? Is it succumbing to my condition? Is it me giving up on not being disabled?
But it dawned on me in speaking to my friend that perhaps if I took a walking stick when going out and doing things perhaps I might be able to go further. Perhaps I might not be so scared of falling and I might just be a bit safer. But I’m 29. Only 29. I shouldn’t have to be even considering these things. But on the other hand, I’m only 29. I shouldn’t be too scared to enjoy life when I can. I shouldn’t be too scared to do anything too scared to not allow others to see my suffering.
Because I am. I know full well that I push through to try and appear like I’m not struggling when around my friends. I don’t want them to see me how I do. Because currently I’m stuck in this space if only seeing myself as this sick disabled person. I’m only seeing my suffering. Because I’ve been too scared to do things that bring out my joy. The other side of me that’s lively and vibrant, funny and silly. I’ve lost sight of that Chlöe because of fear. And that’s a dangerous and terrible place to be.
So I’ve decided that I will buy myself a walking stick and a recliner. Because it’s self-care. It’s a form of support that I need right now. I need support to enjoy life. And I know eventually I’ll feel ok about that. I know eventually I won’t be so embarrassed or feel shame about embracing where I’m at right now. And I know damn well that getting back to enjoying life when I can is worth pushing through these negative feelings.