Chronicles of Life with Multiple Sclerosis
HOLIDAY SUPPORT GROUPS:
Thanksgiving Day, Christmas Eve Day, Christmas Day, New Year’s Eve Day and New Year’s Day
11AM Pacific Time, 10AM Mountain time, 9AM Central time, 8AM Eastern time
The call number is 1-800-977-8002
and the participant code you will be asked to enter is 5429554#.
These Call-in Support Groups are for anyone who needs to hear an encouraging word during these stressful times.
More Info on the Support Group Page.
Is it weird that I got extra excited because I recognize some of those pill numbers? hah.
Such is the life of a mentally/chronically ill person. And these are only one day’s worth of prescription drugs. Add to that miscellaneous over-the-counter painkillers and decongestants and I could be taking 15-20 pills a day.
My monthly payment for medication just went from $43 to $2688.82 HA HA NO THANKS I’M GOOD.
Was gonna get some sleep but I guess calling a lot of medical companies sounds cool too. (EDIT: I AM STALLING LIKE A MOTHERFUCKER. ANXIETY AND CALLING DOCTORS AND SHIT DON’T REALLY MIX)
Also, fun fact that I just learned from my MS support website: Scotland has the largest MS-diagnosed population and it’s assumed it has something to do with their latitude because somehow the further you are from the equator the more likely you are to get MS???
WELL GUESS WHO SPENT YEARS IN SCOTLAND AND HAD ALL OF THEIR WORST SYMPTOMS DEVELOP THERE :V
EDIT: Ha ha, oh wow! The Multiple Sclerosis tag is pretty depressing!
EDIT: waiting on a call back and an email! Can’t fall asleep! Yaaaay!
I really need help.
Nothing has been more debilitating than my recent overload - of sensory overload.
I have major troubles with sensory integration.
I can’t go anywhere without it destroying me.
I can’t do anything without it destroying me.
I’ve always had a sensory integration issue, but right now it’s out of control.
When I can no longer isolate each sense from the rest, that’s when things get bad.
My nervous system starts to shut down.
My heart rate soars into the upper hundreds without POTS
My throat closes up a little and my breathing isnt steady
I get a severe headache at the base of my skull
Everything starts to feel like a dagger to my brain
it differs from my panic attacks, because it’s not even comparable.
it resembles that of a seizure sometimes, my muscles will spasm during these attacks sometimes
it’s usually triggered by chaotic layers of sounds over sounds
fast motion in my range of sight
and even sometimes it’s strong taste or being startled by touch
I can’t do schoolwork or have my free time I can’t go in public I can’t do anything
I’m seeing a CBT/psych on friday, but if you know anything at all that can help, if you can offer any advice, please message me
I’m struggling so much
ok. I’m medicated now & ready for bed.. brain barely works to begin with much less when trying to force it shut down. Anyway, your post hit so close to home. you need to stop trying to not experience what you’re experiencing.
Both in panic attacks (as you know) and when having a neurological incident, trying to analyze whats happening, control whats happening, etc, will just make it worse. if you can’t go in public at this point? don’t. Do what you need to do to make yourself as comfortable as possible and get yourself through these moments. Its so much harder than typing it I know.. I’ve been there.. but don’t worry about what other will think if you don’t finish your homework, don’t answer emails, calls, don’t do xyz. Right now just get yourself through the moment. You can, and will, deal with the rest when you can.. cut yourself some slack too because your body itself is telling you that you need to focus on it. Like if your body could bitch slap your brain?
Then you def. need to see both a psych and a doctor. you should find one that you feel most comfortable with.. cause if you’re not comfortable and don’t feel like you’re being heard, whatever is going on with your body and your mind will likely be overlooked, or missunderstood, or you’ll feel that way in which case its useless.
blah I hope you’re doing ok-ish. I am not an expert in anything other than being crankie and whiny and chronically ill so keep that in mind too.. but i’ve felt the way you describe and wanted to give my 2 cents and support-like thoughts.
Send me a message if you want, I’m not the quickest to respond to things (slow like a tortoise hah) but I’ll do my best. I know lots of people on tumblr & online can understand and are extra supportive (they’ve inspired me) so hopefully others will respond too.
How about we celebrate by providing real resources, health care AND mental health care, for all our Veterans. How about we provide real support for PTSD and use it to reduce the stigma surrounding mental health issues and trauma so more people are willing to get the help we need. I think that would be an even better thanks than a national holiday. Just saying.
Story of my life off the internet..
this is where I go to get it out so I can keep smiling. Thanks internet for taking it and not throwing it back in my face (too often ;-) )
started having really vivid dreams/nightmares? I have had the most vivid nightmares for the last month or so and the only thing that I can think of thats causing it (other than general crazy) is the Tysabri and/or Tysabri and some of my psych meds interacting. I am off the ambien so I know its not that. I know my psychiatrist has no clue about MS or any of the meds I’m taking and doesn’t seem to do any checking about interactions. I’ve done some myself and all I’ve found is that some people on Tysabri have reported mood issues and nightmares. So I’m wondering…
I know I need a new “head doctor” if you will, but insurance makes switching hard. Some of my dreams seemed like very vivid stress dreams while others were just horrible nightmares. I had one (don’t laugh cause it was actually really traumatic) that involved an anonymous person’s pet meeting Zoya (my tortoise) and biting her head off in an incredibly vivid and gory way. It was horrible.
The damn dreams aren’t making my general mental health better, nor my ability to deal with fatigue any easier. So far I really feel like the infusions are 1000 times better than the daily injections overall, but this aspect is unsettling. Not to mention, the mood issues it either comes with or induces.
The idea of switching anti depressants at this point is pretty horrifying. I’m on so many meds that weening off of something that (I know very well) takes a very long time and causes lots of distress, only to try something new that will take ages to take effect and might be worse than what I’m now.. it just seems like its not an option.
Anyway, I did talk to my neuro about this (or his research assistant anyway) and he’s gonna get back to me this week. So we’ll see… just thought I’d ask…
anyone else had this experience