Priority one

Uncomfortable. One word that sums up my entire morning so far, everything seems to be aching and once more there is no single position that allows me to stay still for more than just a few minutes. Mornings like this inevitably make everything else slow or hard going, when your mind is pulled constantly to this bit or that bit that can’t put up with the position it is in, well you loose track, become fractious and quite simply find yourself going round in circles, repeating, or missing out steps along the way. There is also a growing desire to just stop, to give up trying and to slide back into bed where at least comfort can always be found. That though would be giving in and no matter how bad things might be, giving in is still not something I feel ready to do, I still have far more to do than just lie there hour after hour.

I often wonder what it will be like when I am no longer able to get up and live my life in more than just one room, to be honest, it really scares me as I simply just don’t see how we will cope. I have made no secret that I have a total fear of being bed bound, of not being able to care for myself at all, even badly. I am like a great number of others who simply sees lying in bed like a vegetable, as not really being alive, I don’t even like lying on the settee, as it just doesn’t fit in my mind as something a person should do. To me, if you are awake you should at the very least be sat up in the living room and if at all possible, you should be doing something productive with your time, not just lying around watching TV. One of the problems we have in our home is that there simply isn’t room for a wheelchair to be manoeuvred around. I have tried but its use is so limited that in truth it is more work to use it than it is to just try and walk, not even reorganising our furniture would make any real difference, as no matter what we do I will never manage to get a chair into the bathroom. As time goes on I worry about it more and more, I know that my mobility is already poor but as long as I can manage the house, I still have a good quality of life. I used to worry that I would lose the use of my arms or my eyesight, they were the two hells I feared the most, but now, well now, to be honest, being unable to walk at all, really would be my ultimate hell.

It is strange how we value different things at different times, almost as though what we prize is strictly relevant to whatever we are doing at that time. When I was still working it was my memory that was my nightmare, not being able to walk just didn’t seem to matter, I saw my brain as the prized function as without it’s abilities and skills I couldn’t earn a living. To an extent I was right, because I continued to work even when I lost the use of my arm for a year it didn’t stop me dead, I learned to work with it. My mobility didn’t matter as I could move around the office quicker than anyone else in my chair, so I had only one fear, that the day would come that I would open up my PC’s and not have a clue what to do next. As time went on I took longer and longer to do things and I would forget loads of things, often having to repeat work because I simply couldn’t remember the results of previous years or reasons why I implemented certain systems and processes. I no longer need those skills and I know without even testing them that nearly all of what I knew has gone, yes losing more worries me, but as long as I have enough to still function, well I can cope. Now despite living in a tiny flat and never leaving it, mobility has suddenly become the most important thing I have, what use are my memories when I can’t even get to the kitchen or the bathroom when I need to, my needs have changed and with them my priorities.

Those of you who know me from Twitter or Facebook also know that I spend time daily posting pictures of animals and landscapes, some might think that the landscapes are either places I have been or I wished I had, well neither are the truth. There is one thing that I always prized and that was that I had an eye for both beauty and style, it was one of the things I started to enjoy about the internet once I stopped seeing it as purely a tool I used for work or a great way of doing my shopping. When I first started blogging the time it took daily to do both my blog and send a few tweets was tiny, I found myself with time to explore and to just look around, especially at things I didn’t think I would find interesting, I was trying to expand my knowledge. What I found to my surprise was not just the knowledge but millions of wonderful pictures all free to use. Many were truly terrible, but amongst them were pure gems, beautifully balanced and detailed, pictures that took away the need to go there, simply because they showed all you needed to see and for me, the knowledge around them that I could absorb. I post them partly to amuse, but also because I hope some will be drawn into them and want to seek out the knowledge that goes with them. They have opened my eyes to things I never knew existed, some may want to visit them, but not me, I am content that I have seen the best of them and that I know they are there. I just hope that for those who are like me housebound, will also find a few minutes to escape their walls and dream of somewhere new.


Please read my blog from 2 years ago today 15/04/12 – Fibro or MS? 

Recently I have been asked several times about the differences between MS and Fibromyalgia, I stress again that I am not a Doctor, I have no medical training and all I can ever give is my opinion as a patient. With that in mind, I will try to explain what I know.

On the surface, MS and Fibro do seem very similar and I frequently don’t know which is the catalyst for any or all my symptoms especially when it is pain. Both of these illnesses have common ground, fatigue, widespread pain, aching and stiffness, concentration problems, inability to multitask, long and short term memory problems. Tingling, burning, pricking, and numbness of skin, muscle spasms……..

1 thought on “Priority one

  1. Hello, this is the first time that I have read your blog, although I see your encouraging and thoughtful posts on Twitter. I can well understand your fear of being entirely bed bound. But I hope that I can give you some reassurance. (I am a nurse and have worked with amazing people who cope with all kinds of challenges in their lives). It concerns me that you are limited by not being able to get your wheelchair around the flat, and into the bathroom. Forgive me if you have been through all this before, but are you not able to get assistance to have the necessary changes made? The disabled friends I have have been able to get help with door widening etc. one lovely friend with MS and very limited movement has help getting out of and into bed every day, but it does mean that she is able to spend the day up and about. As you say, this is so vital to emotional well being. I didn’t mean to make this a long posting! Really it was just to say hello, and take heart. If you need more support or assistance it will be available for you, and I can see no reason that if you don’t want to spend your days in bed you will have to, however ummobile you become. Then again, I fully understand that when in pain it can be the most comfortable place! Don’t be too hard on yourself. You are an amazing woman who has connected with the world and made it a better and brighter place. It’s a privilege to meet you here.


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