Chronicles of Life with Multiple Sclerosis
this.. though its starting to seem like I should replace today with this year and yesterday with last year.
Only a fellow spoonie would get it… #chronicallyill #spoons #spoonie #crohns #colitis #RA #rheumatoidarthritis
I’ve decided that I can’t date/marry a Spoonie. We would just shrivel up and die together. But I suppose that’s the most romantic way to go. Even though we’d be moaning and wanting to hold each other but not being able to because of the pain… Depressing yet beautiful… I have mixed feelings.
I’ve had this same conversation with myself… and then I wondered what healthy person would jump into this sort of mess willingly.. hmm
To all my MS, Fibro, Lupus, RA, Pancreatitis, and chronic pain friends. Please try your best to have a wonderful Christmas. I know this time of year is exceptionally hard as we are pushing ourselves and trying to appear normal around friends and family. Trying not to show our pain so we won’t make them feel “uncomfortable”. But tonight, I received a huge reality check as to what my body can and cannot do.
My face feels like acid has been poured on it. The muscle in my left arm is protruding and so tight and exceptionally painful. My leg muscles are so tight that walking hurts like heck and when staying still it still hurts like heck. Headache escalating quickly.
Doing my best to not let it steal my holiday spirit. It’s easy to say but hard to ensure that is doesn’t.
In slight addition to the aforementioned, I go through phases of completely longing for human affection and then switching to total misanthropist mode. Now, i’m in my ‘longing for affection’ mode. Maybe it’s because i feel so completely empty inside i just need something to bring me back up to earth, and i feel like maybe if i had someone who was genuinely interested in me as a person and not my fucking symptoms/asthetics/limitations/failures/freakish behaviour as a result of the previous, then maybe i might actually have a reason to feel almost human like again. I miss conversations that would end in the early hours, I miss that connection, I miss just feeling wanted and needed and even special? I miss it. I’ll never get that back because I have declined in more ways than one, physically, literally, metaphorically, mentally etc…everything you name it and i have well and truly declined in it. So i’ll never feel comfortable in that scenario again because of how anxious and paranoid and depressed and ugly i have become because of my ever present tortorous pain levels and distressing symptoms hacking away at me like a chainsaw. Yet still i long for such affection even though I wouldn’t know what to do with it, probably push it away lest I let down my guard and become exposed and vulnerable and that terrifies me because i’m not ready for that. AH contradicting life and times of myself.
I want to write a novel, as well. I feel like everything in my head, needs it’s own book. I can churn out sentences like my body churns out it’s undigested food. In seconds. meh.
Right now, I am somewhere between 10 and 11.
Seriously screaming and crying right now.
Anyone with advice on muscle spasms? It’s both legs. Also hands, feet, back, neck, and throat. But the legs are what is really doing me in.
Seriously, any MSer with advice please comment or message me. I am desperate here and pot is not an option.
I am already maxed out on Baclofen, Valium, and tizandine.
I wish I had advice.. I’m maxed out on baclofen too..