It’s amazing the small things in life that most people take for granted, like simply getting out of bed after a good night’s sleep. Or the jump-up-quickly-because-you-are-late spring that happens and the quick race to get ready for the day. Not the shuffle, roll and stumble that I do because my hips are stiff and my lower back is sore.
Or carrying a basket of washing down to the laundry because you are running out of clean clothes and you can’t put it off any longer. Being able to pick your husband’s dirty socks off the floor where he tossed them the night before while watching television. Reaching your arms up to hang the washing on the line to dry. Do not get me started on making the bed. That effort requires a 30-minute power nap halfway through if there is no one around to help.
I once created a list for my doctor of the simple, everyday things that I was struggling to do. I stopped writing after I had filled the second page. Have I ever told you how much I love my doctor? He went through each and every one of those items to work out why it was hard and what parts of my body were being affected. He wasn’t able to help but at least he didn’t treat me as though I was insane.
It’s not in my head
I do not know how many doctors have tried to tell me my pain is simply my mind playing tricks on me. Do they think I woke up one morning and decided this would be fun? They won’t actually come right out and say it but they drop hints. I am very lucky that I have a great doctor and a wonderful rheumatologist who do not act like that. In fact, the day I finally asked the rheumatologist if he thought I was imagining everything, I almost cried when he said it was an inflammatory response and very definitely NOT all in my head.
Learning to ask for help
Having ankylosing spondylitis has taught me many things. I was always shy and quiet. I never spoke up for myself and would never ask for help. Over the years I have found my voice, both in talking with doctors and by sharing my journey with people. I have also had to learn to ask for help when I need it. Simple things around the house like opening packets. I do not have enough strength in my hands so I get one of the kids to do it for me. Some days brushing my hair is difficult and my husband has to do it for me. Let’s just say he needs to practise – a lot! At one point I couldn’t climb up on a chair to get items from the top cupboards in the pantry. Instead, I now have a very long pair of tongs which is perfect for the hard-to-reach things.
As my physical strength has increased so has my ability to do things again. The other night I even managed to change the sheets on the bed. On my own! With no help!!! Sometimes miracles do happen.