‘After years of being ill I now realise I have to budget my energy’

Fionnuala McKinley
Fionnuala McKinley

When I think about living with Behcet’s, my first thought is about being tired, not an ordinary tiredness after a hard day’s work, more an all-encompassing tiredness that I now know as fatigue.

Over the many years of being ill, I now realise that I have to budget my energy. I start each day with a salt cellar of energy, and if I let it all run through quickly then I have to stop and lie dow n.

When I have a big event I really want to go to, then I have to build in time to rest both before and after. I know this is common to many illnesses but it is the one that is very important to everyday life when living with Behcet’s .

The next challenge for those with Behcet’s is the pain of trying to move first thing in the morning.

Behcet’s , for many people, brings a rheumatic arthritis, usually affecting the knees, elbows, ankles and neck.

It tends to not cause the obvious changes of rheumatoid arthritis, but over time the joints become damaged leading to osteo-arthritis,

In my case lying in bed I have to carry out a number of joint stretches before I put a foot on the ground. Then I put on my NHS custom-made boots followed by plastic splints which help me stand and walk

In the house I walk with a stick and outside I use a rollator. My morning routine also involves taking a lot of medication and inhalers, then I feel my day begins.

I worked in the health service for over 30 years as a nurse and health visitor, behaviour nurse and laterally as a family therapist before I had to retire,

For me, I found the lack of choice in when to retire took a lot of time to get used to, I had always been very focused on my job and suddenly I didn’t have it anymore.

I realised I would have to find new dreams, things I could achieve. I, like many people, decided to write a novel, which I have now finished. I am trying to get someone to publish it,

I have always been interested in crafts including spinning, weaving, making Carrickmacross lace, and embroidery.

As I was ill and off school a lot as a child, my mother taught me embroidery to keep me in bed resting when I was sick.

Last year I had my first exhibition of photography, lace and embroidery.

Everyone’s life and journey are different, I like to have goals to work towards. Having these goals has given me things to strive for, they distract me from my condition, generally make life better.

I also believe that I need to keep myself as fit as possible within in my constraints. For this reason I have taken up aqua jogging, a non weight-bearing activity which helps exercise my joints.

I also try to go to the gym at least three times a week, however this does not always work out as when I get an infection or a flare up I have to stop all this and rest my joints, I do find this frustrating as I often feel I go three steps forward and four back.

When I had adjusted to being ill I decided I wanted to do something to help other people. I found the Behcet’s UK helpline and website helpful and I became a volunteer,

All the volunteers manning the phones have Behcet’s themselves,

I do think it’s important to still have fun in life even if you are ill and last year, with some friends, I joined a community choir which I love. I do have to acknowledge that I am not dependable! For example, I have been too ill to go to the choir since September but know that as I am beginning to feel better I will be back singing or at least trying to.

I sometimes go to the cinema in the afternoon which always feels like a guilty thing to do, but I know I tend not to go out late as I get too tired, so the afternoon is great for me.

Since I retired I got a poodle named Lenny, he gets me out every day and I meet people and talk to lots of other dog walkers.

My friend Dorothy very kindly takes Lenny out with her dog if I am too sick to do so. My family have also been a great help in supporting my creative activities. My sister takes me to conferences and accompanies me to hospital appointments, of which there are lots, I’ve had so many scans I think I might glow in the dark!

I think the biggest change is that life is very unpredictable. I never know when I will have what is called a flare up, when my joints will be very painful and my breathing can be difficult.

I know things will never go back to what they were but I try to focus on what I can do rather than what I can’t. I no longer plan holidays, but I still enjoy getting to the occasional concert or play, and I still love telling a good story.

This year I started to do some work with a local charity PIPS (Public Initiative for Prevention of Suicide and Self-Harm). I only work five hours over two sessions - it works as they are able to be flexible, they know there will be times I will be off sick, and that I can’t do mornings but they can work with this and I am really enjoying feeling part of a team again.

I am generally a happy person who tries to see the good in each day and to focus on what I can do rather than what I can’t.