… fasten your seatbelts
I began this site for other people living with Multiple Sclerosis, and the people in their lives. Because it's hard. And we all want to know how others like us are doing. So this is where I'll spill my beans, good or bad. I'm not normally negative or bitter in any way, but MS can do that to a person, not always, but just beware - we all have some really rough days - and if I happen to be near my computer ... well, I apologise now!
Here's how it is!
I wish I didn't have this dumb annoying disease. I think I'd better say that straight off. I've read a lot of 'stories' written by people with MS, some positive (and often so sickeningly sweet you’d think they’d been written by a saint), and some downright depressing. And it's true that that's how this disease is. Some days are good, some are ok, some are ‘only just’ ok, and some are flat-out crap.
But I'm living, I have a husband that I absolutely adore, kids that I'm immensely proud of, and am blessed to have been born into a loving family. All good stuff.
So what's to be depressed about?
Well actually I can tell you, it’s a lot. Maybe I'm being a bit sensitive, but I wouldn't really call it 'depression', some other word that cruises between dismay, frustration, disappointment, and anger perhaps. Mind you I'm not saying I haven't ever been depressed, pretty obviously an MS diagnosis will depress a person. I just think I've come a long way after almost 20 years with MS.
Anyway, of course there are good things in life, but with MS there sure is a lot to be ticked off about. And don’t tell me I should ‘rise above it’. P*ss off if that's how you think. I guess I apologise for that, or maybe not, but seriously, if you're not dealing with disability don't try telling me that it's ok, in any way. It's not. With MS, disability smacks you in the face from out of nowhere. MS steals from you. It embarrasses you. It never helps. It's the worst kind of uninvited visitor - it's never going to leave.
MS is a devious disease that blasts its way into your life without warning, then it hides itself away, and you think 'ok, if it comes and goes I can handle that'. It's like a volcano erupting and subsiding - over and over. And slowly, sneakily, it begins to change tactics. It stops going away completely, leaves a little reminder that it's been - perhaps a numb hand, a weak foot, or vision disturbance - and ever-so slowly these small reminders grow and fester into what you've come to fear most ... disability.
The fact that I felt and appeared 'normal' until about 2 years ago but now need help walking if there's the slightest obstacle, the fact that this disease is beginning to rule my life when I really thought I was one of the 'lucky ones' because for so long my MS just quietly tagged along … this shocking, unexpected and undeserved disability of a perfectly normal human body, is the reality of life with MS.
And it's cruel, because you get to live a normal life for 30 or more years (57 in my case - diagnosed at 41 with no disability after that for more than 15 years), and then suddenly things change, that thing you thought happened to other people is suddenly happening to you.
AND it's not just me that has to deal with this disease
No, not just me. My husband, my children, my family, my friends are all touched by this cruel disease. I know they wish they could 'fix' me. I feel guilty, and I feel an awkward responsibility for hurting those who love me. I know that sounds wrong, in a way, but it's true. I'm the one who has this awful disease, but it's also grabbed hold of everyone near to me and dear to me. Of course I don't want to have MS, but for the fact that its upset every single person in my life I'd destroy it just as I would anyone or anything who hurt my loved ones, if only I could.
However. It is strange how your outlook changes when you have a disease like this. You do learn to appreciate things you never even thought about. Like, right now, I guess I’m thankful that I don't have problems with much more than my legs - I can still walk, unaided around my home. And with a stick or walker when I go out. But my arms, my hands, and my fingers are all generally doing what they should. So you see? It could always be worse. Well I suppose I am grateful for these things, it's just that I want it ALL back. Some time soon would be good.
I'll try to be more cheerful in future posts, but for my introduction, my first tentative foray into cyberspace I wanted to start off telling it like it is - and this is it - welcome to my blog!
WHAT'S ALL THIS ABOUT?
ColleenDisplaced shares the life of an Australian woman, diagnosed with Multiple Sclerosis (MS) in 1997.
For many years after diagnosis MS didn't bother her at all, but in 2016 as this blog begins, MS is well and truly making itself known.
Learning to cope with disability, this is where she will share her thoughts as she continues to battle through the minefield of MS - and also where she will indulge her thirst for writing!
Got some spare time?ColleenDisplaced has also written articles on Hubpages as 'thebarefootpa', and on workitdaily as 'Colleen Daniels'.
Feel free to check out her articles (some can be accessed by clicking on 'thebarefootpa' title here or on 'Articles' in the navigation bar above)