‘It’s a blessing I was not diagnosed with muscular dystrophy earlier’

Annette Costello, from Rathfarnham, Dublin, was diagnosed with limb girdle muscular dystrophy in her mid-30s.

“I have been asthmatic since the age of 16, and 10 years ago, I ended up with pneumonia after a bad asthma attack. I was admitted to Tallaght hospital where blood tests showed up something abnormal. I was shocked to be diagnosed with limb girdle muscular dystrophy, a progressive and incurable neurological condition. I was in my mid-30s.

I had been accident-prone since a young age and was always tripping and falling, but I thought I was just clumsy. It was initially just my legs that were affected by muscle weakness, but it has progressed into my arms and lungs.

In my opinion, I feel it is a blessing that I was not diagnosed earlier in life because I think it would have held me back and I wouldn’t have achieved a lot of the things I did achieve before my diagnosis. I have been in a wheelchair for the past 15 months and I feel safer in some respects because I don’t have the constant fear of falling.

If I fall, I need two people to help me up because I can’t bear any pressure on my knees. I have damaged cartilage in both knees because of all the falls over the years.

I don’t travel very far because a lot of the paths in the area I live in Rathfarnham are not wheelchair friendly, which is a big disadvantage. My social life has been curtailed quite a bit as so few places are accessible to me now.

I am blessed to have family and friends who are always around when I need them and neighbours who help by putting out the bins, delivering my newspaper every Sunday and anything else I might need help with. I get nine hours’ home help a week from Monday to Friday.

I work three days a week, and while I enjoy my work, I do get very tired. When I was able-bodied, I would jump out of bed and into the shower, then hop into the car to work. I took it all for granted. Now by the time I am sitting at my desk, I feel I have achieved a lot.

I have found that people are inherently good and I regularly receive random acts of kindness from strangers. Little gestures like opening a door mean so much to me. I appreciate every little bit of help I get from strangers, family, friends and colleagues.

I have been involved in Belvedere Youth Club in the heart of the north inner city for the past 22 years. I can no longer help out at club nights and summer camps, but I am on the executive committee. The disability sector and youth facilities are two areas that have been impacted by cuts and that the new Government really need to address."

In conversation with Michelle McDonagh.