I’ve talked about Chronic illness in my blog quite a bit. Ive talked about the fatigue, the blurred vision, the drop foot as well as constipation I’ve dealt with while having Multiple Sclerosis. I’ve talked about my progression in going from RRMS to SPMS. I have touched gently on the blow to self esteem some suffer with when dealing with this hideous disease.
While I’ve shared some very personal experiences that I have gone through, I don”t think I really delved into how much of a mind f*ck it can be. In all honesty it can be quite the roller coaster ride if you let it get the best of you.
I’m not going to sit here and tell you guys that I haven’t cried my eyes out on occasion as my disease has progressed, because I have more than once. I admit my own perception of myself has been negative at times. Not being able to go and do as you once did can be crushing. Having people stare at your cane or when you have to use a scooter to get around the grocery store can really deplete your sense of self worth. Not to mention the countless times I’ve shuffled around the house wearing my cheetah slippers and bathrobe with my hair pulled up in the crazy side ponytail.
After all there are times my skin feels like it’s on fire from nerve pain which makes the thought of putting on clothes a no go. I have nerve pain that touches the soul at times, but even on those days, I’ve beat myself up over not looking my best.
I’m reminded of something my youngest has told me over and over again when I’ve shared something negative. He’s said “Mom don’t even put that in the air”. I have to say when he’s told me that it’s always put things in perspective. In other words don’t give that negativity power.
This gives me pause for thought, why do we hold ourselves to such self deprecation? We should never be our own worst critic, but instead we should build ourselves up.
In my group I always tell my members I’m their cheerleader. If anything, I want them to know that when they don’t have the strength to cheer themselves on, I’ll do it for them. We all have insecurities, especially when dealing with a debilitating disease; but we’re all rockstars in our own way. I’ve heard MS referred to as the snow flake disease, because everyones disease is different. While I can still walk with the use of a cane, I know that some can’t. On the same note, while I need a cane or have had to use a walker in the past, some have never had to experience that.
I remember when first having to use a cane some 12 or so years ago, I made it my mission to have a fabulous selection of canes to choose from. The first one I got was from a medical supply company. Needless to say it was less than fashionable. It was adjustable and just plain ugly. I remember thinking well this isn’t very vogue. I was embarrassed to use it. Since then I started ordering my canes on line. I have a bunch of them now, including one that’s a sword cane. It was given to me by a dear friend who was the assistant chief at the police department I dispatched for. It’s one of my favy canes, but I really don’t use it because the weight of the sword inside is enough to throw my already bad balance off kilter. I have to say being a crip isn’t the best situation, but if I have to I’ll be a fabulous crip.
My point to this is we’re all beautiful and all have a gift to give others, if anything just with our presence. I read in a meme once that said ” I’m not chronically ill, I’m chronically fabulous” We should all have that mind set, because we are ALL chronically fabulous. If anything, chronic illness mixed with disability is not for the faint of heart.