"I'm not ruled by my conditions. I'm me, I'm in charge."

As a child I suffered a lot of pulled muscles in my neck, my legs and all over the body. I was in my twenties when my stomach problems started.

In 1993 I was diagnosed with diverticular disease. And soon after with osteoarthritis.

I was at my sister’s funeral, talking to a cousin, and I said to her I had dislocated my shoulder, my finger, and various limbs and she said, “Oh you’ve got the family curse, EDS”. Ehlers-Danlos syndrome. It’s a connective tissue disorder to do with collagen. It was a ‘Eureka’ moment. Everything makes sense now. It explained why I had so many sprains and strains.

I was successfully treated for cancer in 2011. I also have diabetes. I was diagnosed with that in 2012 so that meant that my diet and lifestyle had to change. So I’m more conscious now about what I eat, when I eat, and I manage it quite well.

One of the things I’ve had to give up is gardening. I used to love my garden. I could spend all day out there cutting the grass, trimming, weeding, planting.

You know I can’t make plans. I can’t say ‘I will meet you on Thursday’. We go shopping, we do this, we do that. I used to go to the market with a friend. I can’t make arrangements anymore because it could be Thursday morning I wake up and I can’t get out of a bed. So then you’re letting people down.

Some of the symptoms I get with the osteoarthritis are in my knees which become very painful.

Also my fingers can be really stiff and swollen at times as well.  I do lose my grip and sometimes my hands are so stiff I can’t open lids, so I’ve got various bits and bobs to help me open jars and things.

I drop a lot of things but I’ve got around that by getting rid of the kettle and buying a water boiler.

I’m a very stubborn person. I don’t give into things easily and I think I am my own worst enemy really because I leave things to get worse before I do anything.

I started getting depressed in 2012. I didn’t actually go to a doctor till about 2014. I was crying, I was in a state. We discussed it and I decided to go on an antidepressant. So I’ve been on them ever since. They helped me cope and get through.

I’m under lots of different departments at the hospitals. I find that sometimes in a month I can have four or five hospital appointments.

On this one year I had so many appointments. 52 weeks in a year and I had 68 appointments. Different departments, different check ups. That was doctors, GP, hospital, diabetes check, eye checks and everything else. I had to give up work because of it.

Me and my treatment

At one point I was on 32 plus tablets a day. That included a lot of pain medication.

I decided I wanted to stop the pain medication and the GP agreed. So now I just take the medication for my diabetes and depression and I’m fine. If I need to, I take a couple of paracetamol.

For my diabetes I went on a [self-management] course called the DESMOND course and that taught me a lot. That was arranged by the GP and I think I’m doing all right.

I do regular Tai Chi, which helps with my osteoarthritis.

I’ve had physio. We were taught gentle exercises to help with our knees, back and various other joints. I found that really helpful and I’ve carried on those exercises. Not as much as I should but I do carry them on.

I use a Cpap machine while I sleep to help with sleep apnoea.

I’m a very stubborn person. I don’t give into things easily. I’ve been on antidepressants for quite a few years now and they’ve perked me up.

I now have to keep a calendar. I keep all my notes. You know I try and get organised to try keep on the ball with it. It can be quite difficult. But the good thing is the NHS tends to text you now to remind you you’ve got a hospital appointment.

The thing that gives me most joy in life is my family. I don’t know where I’d be without them. One of the most important things are my grandchildren and I try to be hands on with them. I absolutely love them to bits and I think they give me a boost.

I’ll go to assemblies or go to sports days. I’ll be involved. We go to the park we know. In the past, not so much now. But in the past I’ve done cartwheels, I’ve climbed trees, I talk with them all and they keep me active.