This may not sound like much but for the first time in more months than I ever planned in my head, my living room curtains are no longer closed. Open in the hope that winter has gone, I did actually turn the central heating off a week ago and the house has held it’s temperature, so fingers crossed. It isn’t the only thing that I have opened today for the first time in ages, I actually have just opened my entire collection of email accounts. When I was job hunting I opened several accounts to cover different sorts of things, removing the daunting wade through the mountain that awaited me each day. When I started to use social media I added an account for each activities and one spare, ready to go if needed. It is actually something I would recommend highly to anyone who’s memory is more of a danger than a asset, if you keep each online activity to it’s personal email account, you always know what needs doing, ignored or enjoyed. There are thousands of sites out there offering totally free email accounts, they are so easy to set up and picked correctly, they can be grouped to one window. If you have Outlook they can also be swept into that application with ease, it removes that having to remember issue of passwords, it does it for you. By having everything separate and everything organised saves so much frustration time, as you know without looking who has sent you an email. About 5 months ago I accepted that I will now never work again, no one wants me, *sob* *sob*, no I am now cool with it, but I gave up not just searching I gave up opening my email unless someone told me in advance that there was a message to read. I used to think email was the greatest thing about the internet, now it is almost obsolete to me. I guess if you asked 100 people who don’t work, they would tell you they now communicate by text, twitter and Facebook, in just a few years what was an amazing advance has been relegated to business where it actually started. That’s life though, the world moves all over the place and we move with it, heralding each advance with the belief that we will use it for ever, then suddenly it has gone again. One piece of software, that has traveled the entire circle and proved we all come back to our roots eventually, somehow software has just become human.
It’s strange the things you find yourself thinking about when your entire day has no other demands on you, other than to think. I have found an amazingly huge number of people who expect me to well read in the subject of both MS and Fibro, when in truth I’m not. Yes I did a lot of reading when I was first diagnosed, but after the first few years I stopped, because all I was finding was just the same things over and over again, and not ever the things I was looking for. If I did find anything new it was always about treatments that once I had spent ages reading, always turned out to be for those with “Relapse Remitting MS” and not my version of “Progressive remitting MS”. There has been little to no research done for people like me, we are only 5% of the total MS population and nothing seems to work for us at all. It was beautifully put by someone I know through Twitter in that we have one huge advantage over others, we don’t have to take all those horrid treatments, as they just don’t work for us. I suppose that it is an advantage in one way, we do really know exactly what is making us feel as we do, it can’t be a side effect. So yesterday when I had it brought to my attention there was a questionnaire about what research we would like to see done the most, I went to take a look, filled with the expectations that what I want to see just wouldn’t be there. Finding that my version of MS wasn’t listed as it never is, wasn’t a good start and to be honest I nearly didn’t go any further. I am not going to discuss every question here, just one that I clicked as being one of the most important to me and I would hope would be for everyone, our condition map and life expectancy. I can’t speak for anyone else on this, as it isn’t one of the things people seem to talk about, so these are purely my words, feeling and opinions.
From day one of my diagnosis I wanted this information, I wanted to know what I could expect, what would happen to me and when? How long before I couldn’t work, would be housebound, bed-bound and dead? I think that is a fair enough question, I not quite mad enough yet to think that they would be ever able to give me a print out of where I am now and the date all the other mile stone will take over. What I wanted then and now, is a guide as to what I could expect in my life time. I don’t think that is an unreasonable request and they are the kind of things that would allow any one to then plan their futures, with some idea of what they are planning for. If I had been diagnosed with cancer, all this information would have been given to me, laid out with guideline dates. I would have then been able to have possibly avoided being housebound as soon as I was, I would have moved to at least a ground floor flat, if not a bungalow, just one example of the difference it would make. Not once did anyone ever talk to me about the possibility I may be housebound, and not once did I find anyone on any of the sites I visited say housebound might happen, the worst of the worst case scenarios I came across was a wheelchair. No one said you could be so exhausted that by the time you were ready to get into the chair, you wouldn’t be able to go anyway but back to bed in your clothes, to tired to take them off. I full accept that science can’t give us hard and fast dates, many many things can change it along the way, but even now I still want to know. It is a no brainier that more research is needed in a million area’s when it comes to MS, but this to me is not so much research as more a case of collating the information that is already out there. The unknown is always a million times more scary than the known. I really believe that the lives of every MS patient regardless of type of MS, as it is still about collating the info for each one, would live better and more stable lives knowing what is ahead rather than fearing it. The unknown can be totally terrifying and I am sure will be the route of many getting depressed, something that in itself steals away the time they have to be active and happy.
Yes we all want a cure, yes we all want to stop others getting it, yes more research is needed on different things that seem to make a difference to some people not others, the list is endless, my wish is so simple to grant. No two people are the same, I know that, but there will be some common points, some things we do share, and some idea is better than none, there has to be a life cycle of MS.