Coming to terms with being disabled is never easy. As a disabled person, it hardest for you, but it can also be hard for family members to recognise the reality of your new life.
I am also aware that some disabled people never seem able accept the life they now have. They just don’t want to make that adjustment. All I can say is, only when you accept your disability will you be able to move forward and decide how you will live your life in the future. This what I have learnt so far:
1 Your life is not over
It is just going to be different. You have to adjust, but you can and will find a way of living well and of still doing things you enjoy. Be open-minded – you will be surprised how much difference that will make to your future.
As my partner had just reminded me – having fun is important. Try watching a movie at home with ice cream & popcorn. Why not go to a local cafe where you can taste a new dish? My favourite activity is a trip to an art gallery with a scrumptious tea afterwards. Find something fun to do at least once a month.
2 Beware the Myths
Someone will always tell you of a miracle cure – or say you haven’t prayed hard enough. I do not believe either of those statements. You will have your own religious or spiritual take on such advice. As a child I was taught “God does not give us burdens we cannot carry”. But that isn’t true for everyone either. (For the record I’m Jewish and do believe.) Finding a way to acknowledge the advice of others, without following it is a skill worth learning. Be firm, to protect yourself.
3 Be Organised
Being disabled requires super organisation – plan ahead and save energy for the things that matter to you. People often marvel at what I manage to do within a day. Part of how I achieve that is by planning ahead and thinking though what I don’t need to do, so I can achieve the things that really matter to me. I use lists and reminders. I use my wheelchair to carry things from one part of my flat to another. I save energy as much as possible. Never stand when you can sit, never sit when you can lie down.
Getting dressed is tiring for me – so I never change clothes more than once a day and often not until I’m going out out. If someone thinks I’m lazy, that’s their opinion, I know differently. Putting clothes away and sorting laundry is even more exhausting, so that’s always a job for my carers. Little things can make a big difference.
4 Get some practical help
If you can get a good care package from your local council, go for it! It may take sometime to get everything to settle down, but persevere, it’s worth it in the long run. If that is not an option, a small amount of paid help of some sort will make life easier not just for you – but your family too. You might also be able to rent out a room in exchange for some care services. Explore options, be creative.
5 Having a purpose in life is important
Especially so when you are disabled. I see it as being both therapeutic and necessary. Maybe it’s writing a blog like this one. Maybe it’s sharing a skill. Find something that really matters to you. Even if you have multiple restrictions, by doing just one thing you will have achieved something important for yourself and for others.
I manage a two websites, four Facebook pages and three Twitter feeds, for local groups, all from my bed!! It doesn’t earn me any money, but for me what’s more important is I’m contributing to causes I believe in.