I have been so sick all week, I haven't felt this miserable in months! It's like I have some horrific drug or virus inside of me. My head is swimming, fuzzy, and my head pressure is worse than usual. I am so weak and off balance I can barely walk around without assistance. Sometimes I can barely talk because I feel so awful. My bones hurt, my joints hurt, my head hurts, i'm nauseous...can you tell I just need to complain for a minute!?! I'm actually not sure if what I am feeling now is still the Tysabri. I'm thinking the Tysabri reaction may have triggered some sort of setback. I really hope not, but it's hard to tell. (To be fair, I should mention that I was feeling funny all day before the infusion, so maybe this would have happened anyways.)
It's crazy, every time things get unbearable, I have to coach myself back into a place of patience and willingness to face this. It is honestly harder than i could ever explain to not just fall into a depression, run away (i'm not sure how I'd accomplish this, but it's tempting to try!), or lash out somehow. It always surprises me when it comes back this fiercely. Somehow I think once I conquer a day of feeling like a 9/10 on my miserable scale, that I've mastered it and it will be easier the next time around....but it's actually not. I think I have some degree of tolerance and skills for dealing with anything up to a six. I live in that space alot. But man, that 9/10 just kicks my butt every time. I so hate this. Here's to hoping this is a temporary setback.
I remember feeling the way you describe. I remember struggling to read, or watch TV so hard to focus on anything. It was almost impossible to move. Feeling scared and trying to fend off fear and misery was tough with little to hang on to because even doctors didn't have any certainty in understanding what was happening.
ReplyDeleteThe things that helped me to get through were things I had learned in my job as a mental health support worker. I learned to pay attention to tiny shifts in my mood. To see and value the things that make me feel even just a little bit better, even if its for a fleeting moment. I learned to try to live one moment at a time -literally. Most emotional pain comes from trying to see into the future or living in the past. Most things in this moment, only this moment are manageable. Using this perspective made it possible to see those little things that made me smile, or to find beauty in the moment.
I hope this is a temporary setback for you. I hope the days will get easier. But mostly when you are feeling so sick and scared I hope you find some peace in living each moment as it comes.
Kim
Kim, you are such a blessing in my life! Seriously, I am so glad to have met you. Thank you for all your support, and thank you for sharing this advice. It is some of the best advice I've gotten since starting this crazy journey. Thank you for taking the time to care so much. I will definitely work towards applying this, and maybe I will actually learn how to handle those 9/10 days!
ReplyDeleteThinking of you and praying for your health also!
Mandy
Hi Mandy,
ReplyDeleteI am so sorry to read about your experiences, particularly your current suffering after all you have been through. You are clearly an incredibly strong person and it is wonderful that you have created this forum for your own release and expression, and to connect with others - even if it was initially to keep your loved ones updated.
Please make sure to follow with your regular internist as well as your neurologist. It is important that someone is considering your condition holistically.
My prayers are with you
Thank you so much for such thoughtful comments. And actually, that is really good advice. I'll probably call tomorrow for an appointment with my internist because I'm really not getting better and my neurologist doesn't have any suggestions. Its a good point that I need to keep someone looking at the big picture, and I really haven't, so thank you. And thank you also for your prayers, that really means alot to me.
ReplyDeleteMandy
Oh my heavens, Mandy!!! It's ok to vent; it's ok to cry and be frustrated; just keep taking your friends' advice and get through each MOMENT. You're still in my prayers; haven't left them!
ReplyDeleteYou are DEFINITELY allowed to complain for a minute...or more! You are in the middle of a very hard thing. It's impossible to be cheerful all the time. Heavenly Father gave us emotions for a reason. It's okay to feel sad or frustrated sometimes. I just wish there was something more all of us could do to help! Prayers for you, as always, dear. <3
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