Note: I am not a medical professional. The contents of this blog are my opinions and experiences. Always consult your doctor before making any health decisions, and always educate yourself about your conditions and their treatments.
We all know how important it is to eat breakfast, but it's hard enough to get everything going in the morning when you don't have to wonder if you'll be able to get out of bed. It's all about planning ahead and making it easy, while still making healthy choices.
From the Winter 2011 NMSS Greater New England Chapter MS Connection:
"Researchers in Taiwan have reported that people who experienced an attack of the virus-triggered herpes zoster--which usually shows up as the skin rash known as shingles--were more than three times as likely to develop MS over the next year than individuals who did not have an attack."
The question I can't answer is "what's your pain level?"
Where?
You want the pain level for my PHN? My legs? That nagging thing in my shoulder? How about my jaw? Or should I just average it out over my whole body?
It'd be easier if the nurse just handed me a diagram of my body and some crayons so I could color-code and maybe draw some lightning bolts and frowny faces over the spots where it really hurts.
"I will never [chronicillnesscat] 'get well soon'"
And, you know, that's okay. Really. It isn't great and it certainly isn't what I wished for, but I'm dealing. And part of what helps me deal is people around me understanding that and saying something like "I hope you get through this flare quickly and easily" instead of "get well soon."
I didn't write this Chronic Illness Cat submission, but I could have. Every three months a nurse from my specialty pharmaceutical provider calls to ask about my chronic illness. She has a list of questions about symptoms I may have and I generally answer them by saying "yes, but it's nothing new." If someone isn't asking me about them I'm generally not paying attention to them, because these symptoms are my new normal.
So how do I know when something warrants medical treatment? How much pain is too much? How many extra muscle spasms? How much fatigue?
The answer for me is I don't know, and I probably won't know, so I have to place my trust in someone else. That someone for me is my MS Nurse. She's such a valuable part of my team, maybe one of the most valuable parts. She listens to my concerns, gives me information, and, most importantly, tells me when something requires an appointment with my neurologist. I couldn't do it without her.
From beingmex3.tumblr.com:
This is what i did today. I made charts and laminated them so i can color each day what hurts and what the pain level is.
Its hanging on my pantry so my family can see it and i dont have to constantly be saying what hurts or saying i can do things. They can look at the chart. :P
I think this is absolutely brilliant. What a great way to communicate your pain levels and ability without having to constantly talk about it and be reminded of it. I think it would also help with any issues of giving or getting too much or too little assistance.
In my ideal world this would be computer-based so I could simply email it to my husband every day instead of my usual "this is how it is, fyi" email. I'd also like to be able to save the data for tracking purposes just in case it's needed.
Register with MS Active Source to get your free MS Workout or MS Yoga DVD. Note: They are affiliated with Biogen, maker of Avonex and Tysabri. When you register you agree to receive information from them. (Of course, you can type anything you want in the email and phone fields.)
Several inches of informational and educational brochures and presentations, three water bottles, a giant cup, five bags, pens, magnets, and more cooling pads than I can wear at one time. There was a mini chocolate bar in there, too, but sadly that did not last until the picture.
The event was more fun than I expected. Because I am my mother's daughter I chatted with a bunch of people and made a friend. (There is something wonderful about being able to speak to people who get it because they're living it.) I attended a workshop on pain and pain management and one on fatigue and learned some things. (Big note to self: arrange to see a physical therapist!) And I ate a truly nice piece of carrot cake with cream cheese frosting.
I'm tucked away at home safe and warm before the snow comes and I am exhausted. Time to file all my information before I lose it and then relax; tomorrow is soon enough to look through it all.
Hmm I wonder. How many people in the chronic illness circle on Tumblr currently attend college? And how do you feel about it? And if you’ve dropped out because of an illness, what are you doing now to make a living? (via leoncillo on Tumblr)
I'm one class away from finishing my BA. One class. One horrid quantitative reasoning (statistics) class. The plan was to have finished it this past Spring. I was taking it and everything was going according to plan until I had another MS exacerbation.
The fatigue was terrible. The pain, the difficulty walking, they were all hard. But what made it impossible for me to finish that class was the cognitive difficulties I developed. Since then I had a neuropsych evaluation and realized why this was all so hard for me. While my ability stayed in the 95th to 99th percentile, my recall speed was in the 21st percentile. I can no longer multi-task, something I used to excel at. Not only can I not multi-task, I can't have any distractions at all when trying to learn something. I have to work extremely hard to commit things to memory and even harder to pull them out of my memory when I need them.
Yeah, it's a blow. I build a lot of my identity on my intellectual ability and on being able to help people, and now I don't have that.
The Neuro-Psychologist was great. She gave me so many tips that will hopefully help me take and finish that one last class that stands between me and my degree. She also wrote something for my college, telling them the accommodations I need and why.
So here I am right now, trying to get SSDI after working more than half my life then having that ability taken away from me by MS. I don't know if I will ever be able to work again but I have to hope.
