"Being stuck in bed most of the time doesn’t have to mean it’s all over and life is finished."
‘Confined to bed’. ‘Restricted to bed’. Bedbound, bedridden.
Words and terms that sound so pitiable. So pathetic. So awful. A life that’s hardly worth living. The end of ever having a ‘normal’ life again. Better off dead.
But that’s not the case.
It doesn’t have to be like that. Being stuck in bed most of the time doesn’t have to mean it’s all over and life is finished. There is so much that can still be done, so much left to do, so much life yet to live.
I know there are many people who are in horrible pain or, at least, in considerable discomfort for much of the time. I can’t speak for them as I haven’t experienced it. I don’t fall into that category, but there are also lots of people, like me, who are just unable to get up much because of their impairment.
This can be due to the medical equipment they need to stay alive or due to the lack of help and support they have.
Or just because it’s such hard work to do it and it’s often not worth the effort. I’m one of that category.
With assistance, I can get up and sit in my wheelchair and go out but I usually just can’t be bothered. It takes several people, lots of planning and a whole load of equipment to get me into my wheelchair and ready to leave my room.
So much faff and palaver.
And then, of course, we would have to do the reverse to get me back to bed later on, when I return, so I usually just don’t do it. Another two hours of my life, one at either end of the day, that I wouldn’t get back. Why go through all that if I’ve nothing to do, nowhere to go and no-one to see. Might as well just stay put.
Most of the things I would do if I got out of my bed can also be done from under my duvet anyway! So, most of the time, that’s where I stay.
Shopping? I can get what I want online and have it delivered straight to my door. I can get items from anywhere in the world, not just my local high street, and it’s all so very easy.
Meet with friends for coffee? I have some lovely friends who come around to my house to visit regularly, with delicious treats and gooey cakes so that we can indulge ourselves together, here. I’m considering buying a coffee machine too. Last of the big spenders!
Trips to the cinema? Netflix is a thing and I have a Dvd player.
"Most of the things I would do if I got out of my bed can also be done from under my duvet anyway!"
Meet new people? Hello Facebook and Twitter! Loads of people from all over the world to chat to there.
Get a job? More and more employment opportunities are available online which can be done from home. Amongst other things, I’ve done envelope stuffing, entered responses from surveys onto a database and worked on a national helpline where I provided advice, information and assistance to callers by phone, email and letter.
Continue my education? I am considering doing a course online through Open Learn or the Open University or with one of the plethora of US universities which have online courses. The world of education is, as they say, my oyster.
Be involved in local life? All things are possible. I’ve stood – well, lain down any rate - for election to my local Council. I’m involved with local pressure groups, trying to improve life for everyone in my area, too. They all have websites, with a Social Media presence, and so do I.
And National Politics is not a no-go area either. I can be involved with that too. I’ve been a member of the Party for many years, and I’ve been on the national Executive for the Liberal Democrat Disability Association for several years. I was recently on a selection panel for a role at HQ which was conducted by phone and online and that all went very well.
I was very much involved with the whole process, felt that my opinion was valued and considered and never got the impression I was just a token towards diversity and inclusivity. Hopefully, I’ll get the chance to do something similar again in the future.
I am also a bit of a teacher too. Once or twice per year for the past 4 or 5 years, my lovely GP has sent a group of medical students from Kings College Hospital round to visit me so I can help them learn how to work with people like me and develop their ‘bedside manner’.
I consider this to be helping a lovely GP with her work, a valuable lesson for the students that they can’t learn from books and I love doing it. It's part of my way of ‘giving back’ and saying ‘Thank you’. If it means that even just one of them becomes a better, more empathetic medic as a result then I’ve done my job, made a difference and I’m happy.
"There are plenty of things to do, people to meet and ‘virtual’ places to go so I’m off to meet, do and visit them all as soon as I can."
And then there are the hobbies and activities which can all be done from or in my bed too. I like writing. Both fact and fiction. I have had my work published in the National Press, written articles for magazines and journals and have been commissioned to produce items for various websites on a variety of topics.
I also have fun every year with something called ‘Nanowrimo’ or National Novel Writing Month. This takes place worldwide every November and participants are challenged to write a novel of at least 50,000 words in just 30 days. Thousands take part and its such fun. Your imagination runs riot and the words can just flow. Several people have written best-selling novels after taking part in the challenge but, even if you don’t, it's still really good fun trying. I’ve done it twice so far, achieving my 50k once, and I have an idea bubbling at the back of my brain for my next attempt.
Whether anything comes of it, watch this space but, if nothing does, there’s always next year!
Spending most of your life under a duvet is no longer a reason for withdrawing from the world and slamming the door shut. There are plenty of things to do, people to meet and ‘virtual’ places to go so I’m off to meet, do and visit them all as soon as I can.
Why not join me, it’ll be fun!