Chronicles of Life with Multiple Sclerosis
I think the notion that I should hide my disease or keep it a secret is totally fucked. How can being open about my having MS be a disadvantage? Anyone who is not willing to date/employ/befriend me because of it is not worth my time/effort/energy/love. I understand that it’s totally up to people as individuals to disclose, what I guess is, quite private information about themselves but I read a lot about people spending (quite valuable) energy trying to pass as perfectly-abled.
The more people know, the more people are understanding. I make a point of being open about my MS, hopefully I come across happy and willing to answer peoples questions. Lots of people don’t know about MS, and admittedly I didn’t either. Which is a total embarrassment because my Aunt is nursing home-bound at under 60 with (I can only assume is) secondary progressive MS.
So many people think that it is a muscle disease, or a problem with bones. The more that I can fill people in, so they have a greater understanding on how it is for me living with MS the more they understand when I can’t do the things they want me to (and usually that I want to too). It makes it easier for me and also makes them feel less like I’m ditching them or being a “bad” friend because I can’t always see them/leave early etc.
Anyhow, my point is, I’d love to see people be less embarrassed of their ailments (be them physical or mental). Knowledge is power and rather than running with people who are ignorant or discriminatory, find people who love you for all of you (even the broken/weird/special/diffrent bits) because I swear they are out there.
This rant inspired by…
This girl lives in my town and is trying to bring awareness to a worthwhile cause. Please watch this video and pass it on to friends and family. Being a nurse, I’ve seen what MS does to not only the person diagnosed with it but also to their family and friends. I hope one day soon they find a cure.
but my first 2012 insomnia sunrise is beautiful and my amazing tortoise Zoya is awake and blinking at me.. what more could I want!?! Well, good friends ending up crashing on my couch.. not ashamed to say that I’m so happy to still be able to be helpful and to have them in my home. These peeps are my REAL family.. biology be damned.
so far I give 2012 about a 8.5 ;-)
While this will probably go unread, I feel the need to post it anyway. If I can just express some of these feelings, maybe they’ll go away, and maybe I will feel better.
So here it is: Im miserable.
My misery doesn’t stem from some small injustice or petty problem, Hell I wish it did.
No, tumblr, Im miserable because Im alone. There is no one who I can call a real friend, someone who I can hang out with, and someone I can count on when I need them.
I know, my illness doesn’t make things easy, and I know that a lot of people, young and old, don’t have the patience to deal with someone who can’t keep up with them. All I want is one friend who is willing to stick it out though.
School friends, didn’t understand the illness, had other things in mind. Fair enough.
Ex, wanted the freedom, away from someone who couldn’t keep up. Okay, hurt like Fuck but alright.
And just like that, Im alone again.
Im not a bad person. Im kind and I care about people, Im fiercely loyal, and I would help anyone who asked for it. So what is it about me that drives people away? Why does no one want to be my friend?
Am I not being punished enough by being ill? My health was stolen from me, must I suffer rejection and isolation, too?
Must I spend every day alone until this miserable illness destroys my miserable little life?
Thanks for listening tumblr. If only you had all the answers to my questions.
I wish I knew the answers too… but know many of us are listening (reading?)… and while its not the same, you’re not alone. We, or I cause I can really only speak for myself, understand what you are feeling in my own ways. I’m sending you a hug and good thoughts (as useless as they may be) and keep posting. Lots of great people on tumblr understand what you’re going through in a lot of ways and are wonderfully supportive. Also, I’ve found for myself that, releasing your thoughts into the vortex of the internet is helpful on its own. Hang in there and click my ask button if you need to unload. I’m not the most quick and consistant to respond but I will always do my best.
Well, here we are mid wedding week and I am totally wiped. There is much more to do than anticipated and all activities are taking much longer than the time allotted. This has lead to quite the stress level in the apartment from the bridesmaids and the bride herself.
So here’s the question… How do you explain to your friends, in the midst of “crisis activity levels”, that while you have been trying to internalize your physical pain its actually rising to what you would deem dangerous levels? How do you tell your friend this when deadlines are fast approaching and they are relying on you as an intrigue part of getting things done? How do you have that conversation with someone who is so stressed and focused on something else? How do you explain that you’ve been trying to act strong but you’re not sure you can do it anymore without feeling like you’ve let that person down or fearing that your presence will then become more of a nuisance than a help? And how do you not sort of resent your body (even a little bit) for not letting you do the things you want to to help?
If this were any other situation, if this were any other person, I would back off. I’d just give in. In this case I just can’t. This person has done so much for me and more than that Its one of those situations where you care about someone so much you just want to do everything in your power to make things perfect for them, because you feel they deserve it.
So, I’ve mostly been taking small breaks and doing the best I can (while trying not to act too distressed or complain too much). I’ve learned that (though its not much of a surprise) cutting and glueing paper over and over, wrapping presents, doing tasks that require manual dexterity of any sort are painful and exhausting to say the least. Obviously carrying things and going up and down the stairs are killers too. All that, done on little sleep and under increasing levels of fatigue, cog fog, optic issues, and pain thats creeped from my waist to my neck and down to my fingers. All of these have been creeping in intensity moment by moment while my list of things to do stays long and incomplete. Its frustrating on a physical and mental level. Ah, in come the ramifications I mentioned in my last ranty post.
Anyway, I’m rambling (as usual) and my hands hurt so I won’t go on too much longer. This all sounds extra dramatic but I know its going to be a beautiful wedding and i’m going to be so happy that I was here to help even a little bit… I hope. hee.
I’ve decided that I need to try and do something for my back at least so i’m hoping to take an hour and get a massage. If only insurance covered those sorts of things. I’d up dose my Baclofen but we all know how productive I’ll be on a higher dose of that.
Blerg. I’ll figure something out.
Anyway, cross your fingers I don’t run myself down so much that I end up screwing it all and not being able to walk at the wedding. HAH. That would be pretty funny right?