I am on my own today, Adam isn’t back at work, that isn’t until Monday but as today is Friday, he is at college. I am really pleased that he is doing something that hopefully will give him a better job eventually, like many people including myself, who left school without any silly bits of paper saying we have a brain, he has felt held back by it, getting this HNC will make the world of difference to him. For me it wasn’t getting a qualification that made my working life change, it was me realising that if I wanted something I had to show I could do it and if that meant I had to work every hour that god gave, then that was what I did, yes even without pay. Every time I have ever wanted something from life, I have just gone for it and not only grasped with both hands any rope that was there to help me along, but I also never let myself believe that anything was impossible. I got rather good at bashing down doors and making the world let me in and getting what I wanted, but it wasn’t until I reread my post from yesterday, that I realised that I was laying out another battle, one that clearly has been annoying me for a long time. I also realised that for the first time, I was looking at something that I haven’t the slightest idea what to do about it. How do you bash down doors when you can’t even get to them?
I have spoken many times now that part of my writing and being online was originally to raise the profile of people living with chronic illness, not just MS, but any of the myriad of conditions that millions have to live with and how they all impact on our lives. Like many other things in life, I have found myself preaching to the converted a lot of the time, but I also know that I have made some who have never thought about it at all, what reality can actually really be like. It doesn’t matter what issue it is that I write about on any given day, there is hardly a day where someone doesn’t chirp up on Twitter to say either, “I know this, because I live with it too & I thought I was alone” or “Thank you, I now understand my Mother/friend/partner” or “I never knew, thank you writing this”, but how do you pull those sides together and keep them there working together to make things clearer and better for all, when all your strength is taken just writing about it. I so often feel that I am doing the one thing I have hated all my life, talking without doing, but I can’t change the world on my own and I totally don’t know how to from my living room. All I can do is to keep chipping away and just hope that one day the right person will read what I have written and will be able to start bashing doors on my behalf and shoving my words in their faces until the people with power have to change things. Nothing in life is simple, when you are housebound, trust me they became a thousand times harder for a thousand different reasons and if you don’t believe me, keep reading.
I woke this morning with pain in all the normal places and a great desire to get up, get dressed and go for a pee, it was as I was getting dressed, that I really began to notice all truly all the different point of pain. There is one act in life that is always going to be my least favourite, getting dressed or undressed. When you are fit and healthy, you really don’t think about all the different positions we have to get our bodies into to, to just cover it with a layer of material and none of it is easy to achieve when there is pain everywhere. I also know that any time I mention getting dressed that Adam will offer to help me, honestly, well I know we have never tried it, but I don’t have the slightest doubt in saying this, that would make things worse. Just like getting dry after a shower, I know where my pain is at that very second, which means I know the position and the pressure and speed that I can achieve without making things worse. I used to think that washing and dressing was something that I wouldn’t want assistance with, simply because it was somehow too personal, but it isn’t that at all, well maybe very slightly, but it is far more the pain issue that keeps me refusing his help. When I look at all the things that my health has a head of me still waiting to happen, this is an issue that I can’t see a way around, but one that we all have to do, unless you intend to spend your later years as a rather smelly nudist. It doesn’t matter how I look at it, or what clothing there are out there, we all have two arms and two legs that will have to be manipulated so that they can be covered up and we all have to be able to bend and stretch our bodies so said arms and legs can be clothed or washed and dried. What will work one day, will probably not work the next, in fact, as anyone with a condition anything like my PRMS and Fibro will vouch for, how you got them on, isn’t always going to work in reverse when it comes to taking them off again. I gave up buttons, popper, hooks and eyes and zips along time ago, everything I wear has either got a large amount of lycra in it and/or is so big and soft that it should prove to be no problem, but even all that isn’t enough.
It’s another one of those things that seems so wrong and I never understood until I found myself where I am right now, just why so many people seem to wear such odd clothing, especially a lot of people who are in wheelchairs. When I was in my manual chair, I was still lucky enough that my PRMS was spending most of its energy working at either end of my body, yes I could still dress for the office, but I also made a point of wearing the same outrageous clothes I always loved, thighboots, mini skirts and skimpy tops the rest of the time. Now that I have pain everywhere, well I now understand that fashion, likes and dislikes all go out of the window, comfort and ease of access are all that matter. If I couldn’t understand such a small thing when I already lived with a chronic illness, well what chance do those who don’t, it’s a little thing, but if I didn’t get it, what chance do we have in a world where people judge us on our appearance. I hate to think what someone who was interviewing me for a job would make of me know, well I don’t have to think, I know I wouldn’t get a job no matter what it was, looking as I do now. It is another of those things that unless people know, the way we are treated will always be wrong and not because of anything we have actually done, other than to make the best out of a bad lot.
Unless I won the lottery, when I could employ a designer to work on making me a wardrobe of clothes that not only could I put on with ease and I actually liked, I know there is no chance of ever feeling part of the world, outrageous or not. Clothes define us more than we like to think, for 6 years I haven’t worn a single item that has made me feel good about myself, it’s part of the reason I have an aversion to mirrors and I know without a doubt there are millions in a similar position, many still out and about in a world that laughs at them, just because of how they look and with any comprehension of the truth, another wrong that needs to be made right.
Read my blog from 2 years ago today – 13/03/13 – Now or Later > http://bit.ly/YarzmJ
The start of another day, and it all seemed just all to normal. I have said repeatedly that I hate that word as it normally refers to what is average for the population as a whole, but when it comes to my health at any given point in time, there is no other word to use. Today is normal, not your normal, I will agree but that is the problem, we all too easily…..
I feel for you. I’m thankful everyday for what I have and what I am able to do rather than curse the contrary. So much of the time we write online and hope someone hears what we have to say. Much of the time our words fall upon the ears of those in the choir. Keep chipping away and trying to gain passage on those quiet inroads and your voice may become a cry to which many will rally.
A to Z Challenge Co-host
A Faraway View
WHEN YOU POST, I SEND IT ACROSS CANADA.YOU MAY NEVER MEET OR KNOW WHO YOU HAVE HELPED, BUT IF I CAN REACH A FEW THOUSAND:THEN ANOTHER OF YOUR FOLLOWERS, SENDS IT TO THOUSANDS….ETC, MAYBE TOGETHER, WE CAN MAKE THE DIFFERENCE THAT WILL HELP.((MAYBE NOT YOU OR ME)), BUT SOMEBODY OUT THERE WILL MAKE A CHANGE. YOU ARE DOING A VERY POWERFUL, AND IMPORTANT SERVICE, FOR MANY.DON’T STOP OR HOLD BACK FOR AS LONG AS POSSIBLE. A MOOMOO IS A HAWAIIAN DRESS. THE FABRIC IS LIKE SILK,BUT CHEAP.DROP OVER YOUR HEAD OR SLIP YOUR FEET INTO THE TOP AND PULL UP. THE FABRIC CAUSES NO PAIN, EASY TO GET IN OR OUT OF AND COMES IN MANY STYLES TO GO WITH PURPLE HAIR AND TATTOOS…..HOPE THAT HELPS…IT WORKS FOR ME ON SO MANY LEVELS.