Working togeather

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!

3 thoughts on “Working togeather

  1. Shout as loud as you need to. We’re listening. Another group I would like to metion is the elderly. I’ve just listened to the story of a wonderful man who lived to 103 but he found those last few, almost housebound, years tough. The…not being able to do anything without almost impossible effort followed by tiredness. He was such a positive man just like yourself and when his carer, companion suggested he got a computer at the age of 102 he laughed at first but in the end it opened up a whole new world. Your blog helps me too, to try to put my worries into perspective. I’m having a very tough time at work I get so low at times. I resent my three days at work leaving my brain so foggy that I am unable to enjoy writing creatively on my two writing days, so you help people like me too! All the best, Dianax
    Talking of work must dash….teaching at 9am

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  2. My first recommendation to anyone who finds themselves housebound, regardless of age would be to buy and learn to use a computer, the world it opens up replaces well the world we have lost. I worked for as long as I could and I would recommend to you to continue no matter how difficult it can be at times. But and there is a big BUT, if you really feel it in yourself, not what the Doctors say but in yourself it is time to stop, then do. I missed work badly at first, and still do a bit but I know now it was time, I just didn’t want to admit it. LOL I will be honest, now I know it was the best thing I could have done, my life has improved in so many ways 🙂

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  3. it is so true we do need to shout louder I sometimes think that just because we are housebound we are locked away from life and that we are forgotten by the nation as a whole that is why I love blog and the people I meet both on here and online elsewhere it is a wonderful tool to have.

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