Tonight's ChatMS on Twitter was in a different format - forgive me if I forgot some questions or missed some, it was not very clear what questions there were! (note to the moderators: keep this in mind for those of us who participate after hours and want to follow the conversations :) )
Enjoy away, and feel free to copy/paste to your own blog! Sorry I forgot last week's, I was so pumped because I actually got to participate in real time that I never went back to put them in blog form!
Q1) As an ice-breaker Q, what is your name and what is your most frustrating symptom?
I don't use my real name on this blog :) But let's say my name is Margo, and by far the most frustrating symptoms I've had have been nausea and MS hugs, both of which I thankfully have not had consistently in some time. On the plus side, it made morning sickness really easy to deal with because I had so many anti-nausea tricks!
Q2) How does everyone handle fatigue?
I have to learn to say 'no.' I'm not very good at this, haha! But when I go out with my husband, either for a walk or a day trip somewhere, I have to know when it's time to go. If I overdo it one day, I won't be able to function the next!
Q3) Is anyone on a particular diet? Have you noticed any differences since cutting out certain foods?
HA! This is one of those things I should be doing, but am not. I know that certain foods trigger my acid reflux, like certain types of chocolate, and citrus fruits. But as for real MS symptoms, not really.
Q4) What type of exercise is easiest and benefits your MS the most?
Yoga, yoga, yoga, yoga. Yoga all the way. Not too strenuous for my body and when I do it, I don't feel like I'm going to trip and fall on someone because my feet go numb when I move around too much.
Q5) Has anyone experienced numbness in the stomach & u don't feel when u have to urinate?
Dear Lord, no, but I certainly hope I never have this one.
Q6) Do you guys have set sleep schedules? Or just try to sleep whenever?
Just try to sleep whenever. Insomnia is a huge struggle for me - now that I'm 7 months pregnant it's even worse!! Oy vey.
Q7) Does anyone else feel like they have to REALLY concentrate and focus in order for action to happen in the bathroom?
You mean I'm not the only one??! I have struggled with constipation for so long I can't even tell you. Pregnancy again makes this one all the more enjoyable. Most pregnant women don't struggle with this until at least the second trimester and mine has been on a totally different level since about 5 weeks in. What was already bad was made monumentally worse. Let's just say I should invest in Preparation H and leave it at that. #TMI #Sorry
Q8) For those of you that deal with headaches frequently, where would you say it hurts? And what do you do to help?
I used to get headaches daily. They usually hit around 3 PM or later, and were tension related. I felt them on both sides of my head, a dull ache. When they would get really bad, they would last for days on end - just a dull pain, about a 4 or a 5, but nothing would stop them. After I got pregnant I got an entirely different type of headache - these would hit in the morning, and would hurt on the back of my head as well as the sides. I never had a headache that wasn't just a continuation of the day before that started before 11 AM - but these were like clockwork. Knock on wood, hard, I have not had a headache at all since about my 4th month of pregnancy. I do not look forward to my daily ones returning, and hope it's one of those things that will stay away.
I do get migraines, once in a blue moon. They give me auras and tend to hurt on one side of the face. Optic Neuritis headaches are the absolute worse, they hurt behind the eyes, typically on my right side, and not a fucking thing even touches it - not aspirin, not tylenol, not aleve or ibuprofen, the four pain killer groups. Just wait it out and pray you can see afterwards. This last bout of ON, left me with only partial vision in the right eye, 12 weeks and still no improvement, but it didn't hurt. I think I prefer the blindness to the pain, honestly.
Q9) If you could tell your friends/family one thing about MS and they would 100% believe that one thing. What would it be?
My MS is not my whole world. I talk about it because it makes me feel less alone. I wish you would ask me more questions so that it wasn't so much of a mystery, and you could understand my perspective a little better.
I'm not faking, and I don't want your pity, or even your attention. But acknowledgment that this is hard would be very validating.
Q10) Does anyone else feel out of place in a group setting trying to keep up with conversation and making sense when you reply?
I have not had this kind of immediate brain fog in a group, but I've had it when writing, and I have had to counsel patients with it. I tell them to say "Wait a minute, buffering," while they speak, so that they don't get the inevitable "What?" response. I had a patient who brought in her husband to have his hearing tested because she was certain he wasn't hearing her - he actually had perfect hearing, he said "what" all the time because her MS caused her to frequently not make sense, and he didn't know how else to tell her so.
Q11) Fill in the blank...
I have MS, but MS will never stop me from __________!
Creating, in one medium or another!
Q12) What's that 1 medication/Vitamin that you believe helps you/your MS the best?
I loved my Gilenya. As far as I could tell, I had no side effects, and my MS was kept at bay, give or take a teeny bit of toe numbness on particularly stressful days. It did the trick for me, as long as I could keep my stress level low. I would like to go back on it after my baby is born, if my neurologist is willing to work with me.
Q13) Does anyone get that feel like you're walking on glass feeling? What helps it?
I only got this a few times with my previous numbness, and it was very disorienting. Like your foot "waking up," the worst part of it. But all the time. I really didn't focus on it because the most disconcerting part was when I walked a few yards, my legs from the knee down would go numb and I would get a spring-like feeling with every step. So glass-feet is a bit foreign to me, but I know it's real to a lot of MSers.
That's it for this week, folks!! Tune in next time!
Love, MSloan
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