I’ve had to accept that some things can’t be cured

My doctor injected strong painkillers, but they made me feel totally out of it. I didn’t feel comfortable about taking them. At first the injections worked for about three weeks, and then they only worked for about two weeks. I had a very good orthopedic doctor at the time. He said to me, "We’re not getting anywhere. I’ll refer you to a pain specialist."

The pain specialist gave me injections too at first. He then suggested that I use something called a pain pump (ed. note: pain pumps can be used to deliver painkillers near to the spinal canal using a thin tube). I wasn’t interested at first. But then I started needing injections more often, and eventually had them every few days. The injections also had steroids in them and I noticed that my skin had become really sensitive. The doctor then mentioned the pain pump again.

I agreed to try it out, and had a pain pump implanted in hospital. I used it at home to test it in everyday situations. And it worked well. So I decided to keep the pump. I’ve been doing really well ever since. I had to get used to it at first, but that’s normal.

My doctors were very understanding, which doesn’t always go without saying. Some doctors don’t think much of painkillers, or don’t like to refer you to other doctors. Seeing a pain specialist was important to me. If your doctor doesn’t want to refer you, you can always switch doctors.

For quite a while I used crutches to walk too. That was really quite difficult. My orthopedist said, "Why don’t you use a rolling walker?" At first I didn’t want one because I thought only old people used them. But then I decided to use one after all because I often didn’t know where to put the crutches and they got on my nerves. Nowadays I never leave the house without my walker. So I don’t need a shopping cart anymore, which is practical. It makes things a lot easier.

If I don’t have to do anything that involves movements that are difficult for me – such as working in the garden or taking things out of a cupboard – then I don't have a problem with back pain. Sometimes I accept the pain and sometimes I feel like crawling into a corner and crying. That can make me feel better too, though.

I’ve had a cleaning lady for more than ten years now. I couldn’t vacuum clean anymore; it wasn’t at all good for my back. It was a difficult decision to make. At first other people said, "What? You’re getting a cleaning lady?" People react like that if they don’t understand how you’re feeling. It’s more obvious that you’re not well if you have something like a plaster cast.

So I had to make a few decisions: the pump, the walker, the cleaning lady. And I had to learn to ask others for help to do things like hammer a nail into a wall or climb up a ladder. Asking others for help is something you have to learn to do. It’s not that easy. After all, you want to do everything yourself.

The people in my life mean a lot to me, particularly because I live on my own. If they’re planning to drive somewhere, they sometimes ask whether I want to join them and whether I’ll be able to sit for that long. They now know that I have problems sitting for a long time. If we go to listen to a talk then I make sure that I sit in the back row or at the side, so I can get up whenever I need to.

Another thing that means a lot to me is my support group. We meet up once a month, which is nice. Sometimes we listen to talks or go on an organized trip, and we can call each other any time. I wouldn’t want to be without the group. I find it important to be able to talk about things with others. You can always call someone if you’re not coping well. Sometimes you chat for half an hour and then feel better again. You’re given a specific contact person. We understand what the other person is going through, and the experiences that we share bring us closer together.

Nowadays I can always go out for meals if people ask. I still can’t sit for hours on end, but at least I can go out, and that means a lot to me.

I’ve had to accept that some things can’t be cured. I always used to think that it simply had to get better again, that there must be a cure. I had to learn to accept it, and nowadays the pain and limitations in my everyday life are just a part of who I am. We’re not exactly friends, but we accept each other.