Not long after I joined twitter I made contact with a group of people who have been unfortunate enough to have a brain tumor, just one of the many groups of people that I have found share many of the problems that I do. It changed my reason for being on Twitter, I set out with a desire to lift the profile of MS but I realised quickly that many already filled that role and my position in amongst all the different groups was to focus on being housebound and all chronic illnesses that can bring anyone to this point, not just those on my rather long list. I mention the brain tumor group because of their tag, #BrainTumorThursday, Thursday is the day they have chosen as a focus day. I have chosen to bombard everyone everyday, and I never apologise for the huge number of tweets I send out daily, yes I have lost many followers as I dominate the timelines, but nearly one year on, I am just as determined to continue telling the world about my life as I ever was. It has taken me a year to have attracted 23,000+ followers so I have just scrapped the surface.
The more people that I meet on line often with conditions I haven’t heard of, or in most cases that I have heard of, but just didn’t realise how many symptoms we share. The more I realise that my crusade on being housebound was the right choice. It is incredibly easy to become transfixed by the illnesses we each have individually, totally understandable, but I now feel more and more that the name we give a condition really doesn’t matter so much as what we all have in common. Pain is pain after all and if you loose your memory does it really matter if the cause is MS, Parkinson, Dementia or Alzheimers, all of us get in a muddle and forget. I suppose that it isn’t until any of us find ourselves living with something that is impairing our lives, that we start to see that just like the rest of life, being put into a pigeon hole doesn’t actually really help us live our lives. What our individual conditions are matters to the Doctors, they need to know as they have to prescribe for us, but outside the medical world, we are all just ill and all in need of support and understanding.
For me the biggest thing I wanted to know was that I am not the only person who has a symptom, that feels the way I do because of it, both mentally and physically. That kind of support has come from right across the spectrum from able bodied onwards, to people a thousand times worse off than me. It is ironic that I spent so many years desperately searching for the name of what was wrong with me, to find eventually that the name doesn’t matter outside of a hospital or Doctors surgery, what matters is what we can all share with each other. For years after my diagnosis I really thought the only people that could possibly do so where those who where identical to me, I was so wrong. Charity organizations polarize the situation, trying to do the right thing and to offer the help they think we all need. For many they offer exactly what is needed, but I can’t help wondering if more could be achieved if they all worked together, rather than individual on all the same things.
So I shout about being housebound, it is a rather large umbrella that’s true, but for those who reach this point in life it appears to be the only one. Be it cancer, MS or any other illness that steals away the outside world, does it matter how we got here, what matters is how we make it work for us and how we as one huge umbrella can help each other. More and more I see what is identical about everyone, even those who are totally fit and healthy strangely can find themselves here as well due to nothing more than old age. I don’t know how many people are housebound in the UK, I did try to find out using Google and amusingly kept finding articles I had written, in the top ten. Although flattering it showed me how little information there is out there for those who find themselves living this life. It looks as thought I need to start shouting louder!