A day in the life

 Well, this is a few days, really. I just wanted to share a few things I’ve been struggling with. One of the main reasons I write is to, hopefully, give insight into life with illness. So here goes.

On Monday I went to my first swimming session/hydrotherapy at Ngawhatu pool in Nelson. I’m seeing a psychotherapist who specialises in pain management. She’s said I need to do at least an hour of an exercise a day, which is really really difficult with the levels of pain and fatigue I have. Swimming is the easiest way.

Anyway, before now I was attending hydrotherapy at the hospital, but I reached the end of my allotted sessions, so I moved to Ngawhatu. The hospital sessions were only six people at a time, and the new ones are between 20 and 30, so I felt a bit overwhelmed.

Everyone was really friendly and made a point of chatting to me, which was both good and bad. I’m very anxious and shy – being in this new environment was such a challenge. The session is unstructured, so I just did my exercises in a corner and tried to stay out of the way.

I already felt quite vulnerable, on account of being very tired and sore. Sometimes, it can actually be worse when people are kind. I found it hard to get through the hour without crying.

I felt very out of place. All of the others are over 60. I  had to wonder if they were wondering what I was doing there (which is me projecting, they probably didn’t even think about it, though it’d be normal to be curious).

No one asked, though. They were all very respectful, which is kind of unusual. Usually someone will ask what’s wrong with me. They all just welcomed me and said they hoped the swimming would help.

Of course the other thing with swimming is that you have to be in togs, so I was like… trying to hide my body. Which is impossible, and silly. I guess I felt a bit… guilty? For having a body that looks young and able, when it’s not? It’s a bizarre feeling to try and explain.

It kind of hit me while I was standing there, doing my exercises with all these people, that this is it. This is my life. I’m going to be doing this, now, forever. Not that that is some horrendous fate. It’s just… kind of hard to take on board. I didn’t expect to be doing aqua classes until I was at least 80. Ankylosing Spondylitis has changed everything.

Today I had a driving lesson. As you might remember from a recent Nelson Mail column, I’ve had my Learner licence for 12 years and it’s just getting ridiculous. I’ve been close to getting my restricted several times, and then things have happened – like getting sick. But I really, really don’t want AS to steal my independence. And I have wanted to drive for a long long time. So I decided to bite the bullet.

I had anxiety nightmares all of last night and woke up convinced I couldn’t get behind the wheel. Good thing I’m used to calming myself down. I’d chosen a woman teacher which really helped.

Of course, the psyching myself up to do it, and then the constant vigilance for an hour behind the wheel absolutely wrecked me. My stomach is sore from being clenched the whole time. My spine is sore from sitting upright. My butt is sore just from the sitting. My arms are sore from holding them up on the wheel. Which really makes me question whether I’m going to be able to drive safely even if I do pass the test. But I am hoping that when I get confident, I will be more relaxed, and therefore in less pain. And the pain doesn’t hit until after I get out of the car, because I’m so focused on what I’m doing.

It’d be really, really amazing for me to be able to drive myself to all my therapies and doctor appointments and swimming etc etc etc. I do have a network of people who help, but I’d love to have that independence. I’ve always enjoyed driving. And it may well be something I have to give up fairly early in my life, depending on how my illness progresses. So I really want to do it now.

Anyway, I’m going to try and rest a bit now, even though I have work to do. My brain feels like tapioca. What a mental image.