Ann's Story


I have always had asthma but it eventually became uncontrollable and I developed other things such as diabetes and angina.

I was frustrated when I first became ill with asthma and diabetes and had to ask people to do things I couldn't do. It is difficult when you have always been independent.

I couldn't do things like vacuuming and cleaning drawers out and you feel you shouldn't ask other people to do it. Even now some things don't get done because I don't like to ask people to do the extras, the little things that niggle because I know they're not done.

At first I did wonder "why me?" I knew I hadn't deserved it and I hadn't done anything really wrong. I sometimes wonder why I've survived when other healthier people have died.

People offered to help me but I didn't like to ask them when they'd just made a general offer. It was better if people rang up, said they'd time to spare and made a definite offer - it showed they were really willing.

In hospital you get a lot of visitors at first but, as the years go by, you find out who your friends are. You need people to visit you at home, not just when you're in hospital; you need the company at home.

It upset me to think about the things I couldn't do and I got upset when my husband planned things too far ahead or unrealistically when I was living for the day and not wanting to anticipate too far ahead. It made me think he didn't care.

I adapted to the change of lifestyle fairly quickly and easily and I could make the financial adjustments too.

My husband adapted to cooking. I found it frustrating to have other people doing things in my house and doing them differently to me. I adjusted in the end but found it hard to lose control of the organisation of the household.

Life grinds to a halt - my life completely changed while the rest of the family carried on as usual.

I'm gradually getting used to living with my illness. I feel quite happy in myself and I have accepted that what's happened is no fault of my own.

I make the best of it - a lot of it is bravado and I have to go out of my way to put on a brave face. I try not to be discontented and tell myself "snap out of it, you're not doing anybody any good, least of all yourself".

I ignore mirrors and I was very self-conscious in a wheelchair at first. I looked straight ahead and not around; I avoided going out. My husband was also affected this way. Oxygen nasal prongs were even worse - people stare and children comment, but now I make a joke about it.

I used to get sympathy and I didn't want that. Occasionally people would talk to my husband and not to me but now people who know me and are used to seeing me respond to me as a person. I have gained confidence.

My children were used to their mother being breathless and were frightened when I had to go into hospital. Now they accept it and make jokes.

My husband has accepted it quite well. It's better now he's home all the time although we need space away from each other. He used to get irritable sometimes with having to help when he'd been out all day at work.

We are now best friends and have developed shared interests that we can do together.

Most friends have gradually dropped off. It's difficult for me to go out because few houses have wheelchair and toilet access so contact with friends falls off.

In a lot of ways my illness has strengthened family relationships and increased the frequency of contact. My family is supportive.

A few people comment on my appearance and are tactless which hurts. It also hurts when friends drop you.

Sometimes doctors haven't trusted my judgement or experience. They should respect the fact that people with chronic conditions know their bodies and their needs.

Things that have helped me are home help, district nurses, home support services generally, having a social worker to talk to, and spiritual support even though I'm not religious. I know my health will not always be as good. I feel well looked after - my well being is promoted and ill health is prevented.

My personal qualities are a sense of humour and I can be a good resource person and a good listener because I'm available. I have become more patient but I don't suffer fools gladly.

I would say to other people with chronic illness to remember not to talk about yourself all the time.

Live life as if it has always been this way - no use grieving over what's been lost. Look forward, do new things that you can do and develop new skills.

Live for today. Try and keep cheerful for the people around you - you'll all feel better.

Don't be frightened to let people see you 're not feeling well and tell people if you're tired etc.

To visitors, I would say limit your hospital visits to 10 minutes and don't talk across the bed to other visitors - it's like watching a tennis match to the patient, so sit on one side or at the bottom of the bed.

Regarding spiritual beliefs, I would like to believe that there's a purpose in life and in all this suffering. I would like to see my parents again. To other people with chronic illness, I would say keep in touch with the outside world. It can be useful to talk to others in similar situations and support groups can be good for information and different ideas.

I have accepted my illness and learned to live with it. My attitude to pain is that I would rather have pain than be short of breath. Death is inevitable. I'm not frightened of death but I am frightened of dying.

Don't ever give up hope that things won't improve because in my case a new drug became available which has increased my quality of life 100%.