Chronicles of Life with Multiple Sclerosis
Every so often I notice how the weather seems to affect me and my MS.
Summer heat results in constantly achy feet/ankles. Ankles are constantly aflame with aches.
The cooler autumn/winter weather… the aches and pains go away (mostly… woo hoo), replaced with more pronounced tiredness and fatigue. Stiffness in the various muscles. Again mostly in my feet, but also throughout leg muscles.
I’m not sure if the fatigue is also there in the summer months but simply masked by the aches. Possibly?
I also notice the weakness in my right side more often at this point of things. My balance is a little off when walking. Not so pronounced it bothers me, I just seem to be more aware of it these days.
The tension/pressure around my head/neck area remains the same. Perhaps a little more fatigue around the various muscles thereabouts.
So… yeah more info for the record.
I know I’m debbie downer a lot, and whine constantly on twitter, but I’m alone in my apt and need to voice this (one more time before I do either of the things I mention at the end of this). I just went out to my car to get the heat humidifier I keep by Zoya’s terrarium in the winter, since its getting cold and her substrate dries out so quick. Anyway, I’ve been in a tone of pain the last few days so, despite my general attempts not to out of stupid pride, I’ve been using my cane even inside my house. So I was using it just now when I went outside where landlord & fam. were talking to some teenage trick or treaters (their youngest son is a senor in HS, I believe, so they were prob his friends). One of them asked who I was supposed to be and where the rest of my costume was because I was hobbling with the cane. My landlord, knowing my situation, tried to butt in and stop them but convo ensued anyway. I smiled and kept going, heard them discussing me on way to and back from my car, then got stared at as I passed on my way in. I know they felt bad but I feel worse. I am wishing I was tougher cause I’d pretty much like to drink myself into a stupor or cry myself to sleep…none of which are good ways to respond. I need to brush it off. trying to brush it off.. if I vomit it into the universe a few times it might go away right?
I know they meant no harm but this was the most blatant face to face with this sort of thing, at a time when I was already irrationally depressed over a stupid holiday I shouldn’t care about but still made me wish I was ‘normal’, so its really getting to me. think I should back away from the internet but then the silence will smoosh me.. and not into a muffin like I want to smooth all the snuggly animals and cute things/ppl I see.
I need to remember that I could be crying about having no power, no life support, no home to go back to, a flood that destroyed everything.. cause with that happening around me I need to bitch slap some perspective into my brain.
I would stand up and cheer but my knees are killing me. Hells yeah.
People I know but don’t know well enough (read: classmates, coworkers) saying this shit: “geez aren’t you always sick?” “you get sick a lot, there must be something wong with you?” “you’re sick again? *eyeroll*” or better yet when a teacher refuses to believe me I was sick AGAIN and gives me this nice condesending look and pats my shoulder “aren’t you always sick?”
Yes, I am always sick! EVERY. SINGLE. DAY. OF. MY. LIFE. Does it always show? Nope, I can be healthy for months at a time but see my blood likes to think of me as an enemy okay? I am sick a LOT but I don’t need to be reminded by your STUPID comments. I have enough to deal with without you questioning me or reminding me or, worse even, making me out to seem like I’m LYING. Oh and once I tell you I have a blood disorder and you mention how your mother/sister/uncle/best friend/aunt/whoever has some sort of disorder and they’re not sick half as much as I am? Well whoofuckinghoo for them because I’d LOVE to be in their place!! A MILLION TIMES OVER. But you know what? I’m not because sadly, for one reason or another, this thing affects me a CERTAIN WAY. Why do you even ask if it turns out you don’t believe me anyway? Why the need to doubt and mock me? Why not let me be? Do people think this is easy or fun for me? That if there was some pill I could take to make this go away and be able not to get sick monthly I would? That I LIKE spending my money on hospitals and medications… bitch please, I still want my playstation three but health comes first.
Just leave me alone and go be a judgemental asshole SOMEWHERE ELSE.
Also, I am sorry you find it amusing that on top of this I am also allergic to a LOT OF SHIT. I am sorry that I ask you nicely to please not smoke around me because it sets my allergies off which can make my already fucked up immune system go HAYWIRE. Yeah, it’s a lot to handle to be around me, thanks for reminding me… not like I live with myself TWENTYFOURFUCKINGSEVEN.
Okay, done ranting now.
I hate that its become so hard for me to hear about peoples careers, progression in school, etc. I can’t stop myself from thinking how hard I worked and that I’m more and more sure every day I’m going to have to give up. I try and tune people out, try and change the subject, have even found my self asking people to stop talking about it. clearly I’m jealous and sad. I am generally not a jealous person. Makes me feel like a self absorbed bitch (and sound like one too probably) but it just hurts so much. so so much.
blerg. MS, you really suck in all kinds of ways.
I would never have had Zoya if not for my first pet, the best kitty in the world, Svengali. He arrived in my life when a sorority girl living in my building my sophomore year of undergrad, who had received this kitten as a gift from a boyfriend, was stomping out the door to get rid of him just as my roommate and I were walking in. I held him in my arms and when she told me and my roommate he was going to the pound, I asked if I could have him. He was the first pet of my own and I fell so much in love with him my roommate let me take him with me when I left school. More over, I think I was so in love with him I was able to convince my friends I had birthed him (I said it enough they went with it till they forgot the truth might be different hah). Today he passed away. Liver disease. I am heart broken but relieved to know he is not in pain. He has not lived with me for many years. When my lung collapsed in 2004 it lead to my kitties Svengali and his brother Roo, who I got in NH a year or two later because sven was so amazing I needed a friend for him, being taken away from me and I was devastated. To this day, after many other things have happened to me that others would qualify as worse, I still consider it the worst thing to have happened to me. Svengali was my first baby and i am heartbroken at his loss. Roo, equally as amazing and thankfully still living a happy healthy life… though I know he will miss his brother, is doing well. He is happy in his home and I miss him terribly even while knowing he is taken care of.
Zoya reminds me to be thankful for such incredible animals and especially thankful to sven for both being an amazing kitty and for leading me to Zoya when I didn’t think I’d ever be able to have and love pets again. if not for losing my kitties I never would have acquired this amazing tortoise and further fallen in love with her and her relative turts and torts. I will miss sven desperately still.
So I hope you will all bare with me while I take a moment to mourn my kitten (though 11 years old at his death and 6 years living away from me) who I love like my flesh and blood. I love you Svengali.