Chronicles of Life with Multiple Sclerosis
trying to explain things is getting fucking exhausting. I am coping the best I can and if you don’t like it, tough. It works for me and I’m the one going through this.
This is exactly what I want to say to my doctors. this and SUCK IT.
eyesight gave up in my right eye today, hips still failing (about 2 mo or more now), turned red, couldn’t form a coherent thought today. After not getting out of my house in ages, feeling claustrophobic and lonely, I looked forward to today hoping to get myself out, of course body fail, cog fail, and then back to hiding in my lair.
I know I’m being a bit dramatic. Its the usual struggle.. the usual summer health issues… the usual inability to function or failed attempts at it.. but I feel as though I’ve been clinging to my need to be strong, positive (or at least be able to laugh about it as I usually do), ability to focus on self care without feeling isolated, alone, and as though I’m falling further from life outside of the walls I live in… that I’m stressed because I can’t really afford these walls. hah. I just feel like I’m trying to kick my own ass but I am too tired to.
I don’t know how to ask for help. I never have been good at that. More so, help isn’t something tangible. How do you express need without having a clue what it is that you might need? Or knowing there is nothing tangible you need, you just know you need.
I have many coping mechanisms.. a goal, a focus, creativity and art, trying to get out in a reasonable manner, resting, talking myself through it… I’ve gone through all these methods of kicking myself out of a funk, tried to let myself feel low for a while, then tried again.. I can’t get there. I move forward and my body pulls me backwards physically and mentally.
More time perhaps, a new way of looking at things, are all probably things I need. I don’t expect to just snap out of things. I know thats ridiculous. I just want to get myself to a place where I can plataue as far as mental response to my body.
I will try again tomorrow, I’ll try to at least laugh more tomorrow. I made a doc appointment for next week, I am reminding myself of Zoya and the garden I’ve created, of all the awesome stuff thats happened in my life, all the inspirational people I know.. I will try again tomorrow. I may hate myself when I’m like this, hate the idea of tomorrow right now, but I will always try again tomorrow.
Today, however, I think I’ll just cry until everything just shuts itself down and I fall asleep.
Merry Christmas, Haley!
I’m gonna make it where you can’t feel your right hand. Get it? It’s funny because you’re right handed. Good luck picking up or writing anything!
Multiple Sclerosis, xxoo
OMG!! MS left me a christmas present just like this! #fistbump (with the other hand?)
Hiding gifts like only a spoonie can! Sometimes you just have to use your illness to your advantage ;)
Have a happy & healthy Christmas!
Hahaha! Truth! my #copaxone boxes make great gift boxes too.
and someone is watching you:
When you are alone:
THIS IS PERFECTION! Though in my case it’d be more of a laughing/inappropriate joke to distract others instead of the Im impenetrable face.
Walgreen’s is a cripple’s best friend.
I transferred a bit of cash from Etsy sales to stock up on some pain relief supplies, and a few other miscellaneous comfort items.
So far, this might be my most successful shopping trip EVER.
I am so impressed with some of these things that I am going to write individual product reviews.
Thank you to everyone who placed an order or made a donation.
This small haul from the pharmacy will go miles toward making me more comfortable. The rest of the money I received is in a savings account to go toward medical equipment (new crutches, bars for our bathroom, etc) and toward paying to see a specialist or two in January. I still have lofty goals to reach for both of those, but at least I have made a dent!! :-)
Oh, hey, this is the cost of ONE MONTH’S WORTH of Gilenya.
THIS. have kept all my bills from each med I took.. when people ask what ‘obama care’ can do for you.. THIS. imagine your life without people. Get a diagnosis and then get on your knees and give thanks for taxes. heh. Also SHIT these meds are expensive.. and its not even a cure. heh.
IF YOU ARE GOING TO PUT ME THROUGH THIS MUCH PAIN JUST KILL ME ALREADY GODDAMNIT.
I am literally screaming and sobbing in agony.
Please just someone make it stop.
*hugehugs* Wish I didn’t relate.. and know how much the release of screaming and sobbing in agony is necessary for survival while also sucking more energy and making it all worse. fuck a bunch of this.
Thank gawwwwd my family has health insurance. I’m so lucky. And thank the lawd for Obamacare. Because I will not be making any money in the career I end up with.
THIS. SO MUCH THIS. Its insanity! I took a picture of my bill hah. bet my insurance company is thrilled it didn’t work out for me.. copaxone is cheaper heh.