I’ve got the Uhthoff’s Phenomenon Blues

Just set me adrift on this iceberg. Please!

It’s supposed to reach 100 degrees Fahrenheit today and since that’s changed all my plans for the day I suppose now is a very good time to tell you about a big part of my invisible illness: Uhthoff’s Phenomenon.

Basically, Uhthoff’s Phenomenon (or Sign) is a worsening of Multiple Sclerosis symptoms caused by heat. It happens because the heat makes it even harder for your already-damaged nerves to function. Something as common-place as a hot bath or shower is enough to trigger symptoms. (Which is why, for years, the “hot bath test” was used to diagnose MS.)

You might be thinking of it as “heat intolerance” but that doesn’t describe the scope of it. I’m not intolerant of heat, I’m knocked on my ass by heat because all of a sudden my nerves no longer transmit the right messages or want to work properly. (Knocked on my ass was a literal statement; I can fall down if the heat is too extreme and I’m unable to cool off quickly enough.)

Here’s the scary part: an increase of 1/4 to 1/2 of a degree Fahrenheit is enough to trigger symptoms. Now try to imagine what an increase of, say, 30 degrees above my optimal will do to me. Yep, that’s why I’ve changed all of my plans for the day to “stay inside an air-conditioned space.”

So what actually happens to me in the heat? The symptoms come on almost immediately; it takes only minutes for me to start to feel the effects. Then I feel drowsy and my legs begin to feel weak. If I’m walking, I start to wobble. I tremble and shake. I slur and forget words, and have trouble with my memory. I feel as if I’m going to pass out. Sometimes I fall or nearly fall down.

The good thing is, under normal circumstances the symptoms can be rapidly reversed by cooling down. By under normal circumstances I mean, being able to cool down immediately. The longer you’re exposed to the heat, the longer it will take to feel better once you begin cooling down.

So if you need me today, I’ll be inside where it’s air-conditioned.

30 Things About My Invisible Illness You May Not Know

1. The illnesses I live with are: Multiple Sclerosis, Depression, General Anxiety Disorder, Diabetes, ME/CFS, Asthma

2. I was diagnosed with it in the year: It ranges from asthma in 1987 to MS in 2011.

3. But I had symptoms since: With MS, I had symptoms since I had the shingles in 2008.

4. The biggest adjustment I’ve had to make is: Not being able to work or go to school.

5. Most people assume: I’m better or worse than I actually am.

6. The hardest part about mornings are: Waking up into a bad pain or disability day and realizing any plans I had must now be scrapped.

7. My favorite medical TV show is: I guess it’s Royal Pains, but I don’t like it because it’s a medical show. (Once they did a spinal tap on someone’s living room floor! OMG, NO!)

8. A gadget I couldn’t live without is: My smartphone. It stores my med list, my appointments, alarms, brings information to me, and brings me to the world when I otherwise can’t get up and out.

9. The hardest part about nights are: Being woken up by pain and being unable to return to sleep.

10. Each day I take 17 (did I count that right?) pills & vitamins. (No comments, please)

11. Regarding alternative treatments I: consider them, try them, and think of them as something that works hand in hand with my conventional treatments. Massage, especially, works wonders for me.

12. If I had to choose between an invisible illness or visible I would choose: I wouldn’t everm make this choice because I think everyone’s particular illness is the worst one for them.

13. Regarding working and career: I miss it. I miss it sorely. It’s a tough thing to talk about so I rarely do.

14. People would be surprised to know: I’m not sure. I’m an open book about my illnesses.

15. The hardest thing to accept about my new reality has been: Not being able to do what I want when I want.

16. Something I never thought I could do with my illness that I did was: I don’t think that way. I tend to assume I can do anything and then find out after trying.

17. The commercials about my illness: Are pretty much fine. I can’t say I’m swayed by them one way or another.

18. Something I really miss doing since I was diagnosed is: Being able to make plans and keep them without illness interrupting.

19. It was really hard to have to give up: School.

20. A new hobby I have taken up since my diagnosis is: No new hobbies, just more of existing hobbies.

21. If I could have one day of feeling normal again I would: I feel normal now. But if I could have one day pain-free and able to move like I used to I would go outside and run and run and run.

22. My illness has taught me: Patience. Patience with others and patience with myself.

23. Want to know a secret? One thing people say that gets under my skin is: I’m really touchy about people scowling and commenting when I use my handicapped parking placard. I have it for a reason, it is mine, and I do need it. You haven’t seen my MRI films so you have no way of knowing about my illness. Also? Hi, do you see my cane?!

24. But I love it when people: Extend invitations to me that acknowledge I may not be able to keep plans I make. Things like “when you’re feeling good” and “spur of the moment” are wonderful things to hear. They show me the person understands.

25. My favorite motto, scripture, quote that gets me through tough times is: I really don’t have one. When times are tough I turn to family and friends.

26. When someone is diagnosed I’d like to tell them: You are not alone. Seek out information on your condition. Find a good neurologist with a good nurse.

27. Something that has surprised me about living with an illness is: My personal resilience. I had no idea I could withstand so much.

28. The nicest thing someone did for me when I wasn’t feeling well was: The Husband often does nice things when I’m unwell.

29. I’m involved with Invisible Illness Week because: I think it’s important to spread this knowledge.

30. The fact that you read this list makes me feel: as if you want to understand me.

Do you downplay your chronic illness?

I wondered recently if I downplay my illness. A friend said she thinks it’s easy to downplay chronic illness because “stating it how it is can just sound ridiculously dramatic.” She’s so right!

This isn’t an issue of trying to avoid the stigma of chronic illness and disability–though it easily could be. It’s an issue of feeling as if I couldn’t possibly be believed if I told people just how bad it is.

What would you say if I told you that during this particular MS exacerbation my cognitive issues are so bad they remind me of my grandmother and great-grandmother when they had Alzheimer’s? What if I told you that I can walk less than 100 feet and that I have to use a cane and lean on a wall to do even that? That often my hands shake so much I can’t write or type? And if I told you I spent all of yesterday in bed, physically exhausted, just from going to the doctor the day before? Does that sound real to you or does that sound like someone exaggerating?

Here’s a reason why I might downplay all of this: I tell people I have multiple sclerosis and they don’t realize what it means. They think I’m sick, like you’re sick, that I’m sick now and will be well soon. They don’t understand there is no well soon. They don’t understand this is permanent.

Usually I look for the happy medium. Should I explain more? Better? Is there a way to be understood? In my experience, no, there isn’t. The people who want to understand will listen and read. The people who don’t will forget they’ve even been told. That’s all there is to it. So I’m learning to be grateful for those who take the time and to not let the others bother me.

MS & My Cane

Getting my cane was the best thing I did for myself this year. Without it I can’t walk more than 200 yards without stopping to sit and rest; with it I can walk 500 yards before resting, and if I’m slow and careful, and if it’s a very good day, I can go farther. It helps me when I wobble, it keeps me from falling down. My cane gave me back something I thought was lost to me and I love it.

The public reaction to my cane has been strange and not at all what I expected. I thought using a cane would make my disability visible–after all, it’s right there! I didn’t expect much of a change in attitude, but I thought at least people would notice the cane’s existence and maybe stop scowling at me for using handicapped parking. (I am ever the optimist.)

Instead, to the majority of people, it’s as if the cane is as invisible as my illness. It’s almost as if by using it I’ve become invisible! People crowd close to me when I walk, and often walk into me. From behind me, they step on the cane. From the side, they knock it out from under me. I’ve had more near-miss falls with the cane in a crowd than I ever had without it.

Other people see the cane and back away from me in a rush. They get as far away from me as fast as they can, dodging and ducking their heads to avoid making eye contact with me. For them, my cane has transformed me into something highly visible and very frightening. I’d promise them that cane usage isn’t contagious but they’re far away before I have a chance to even smile in their direction.

At a public event a few months ago I encountered one person who recognized me–and my cane. We came face to face in a small doorway with only enough room for one of us to pass. He looked at me, smiled, backed up and waved me through, leaving enough room for me to swing my cane by my side. We wished each other a nice afternoon and both went on with our days. I hate to have to admit that such an average encounter made me so happy, but it did, because this man was the only one that day who treated me as a person, albeit a person with a cane.

Remember that. We may have canes or crutches or wheelchairs but we’re still people like you.

September 10-16, 2012 I’m blogging for Invisible Illness Awareness Week.

MS Diagnosis Survey

The Multiple Sclerosis International Federation is asking about your experience with getting your MS diagnosis. Results will be published and a PDF can be emailed to anyone who participates in the survey. The survey takes less than five minutes. Take it here.

Link between Shingles & MS

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.”

How do you know when to call your doctor?

Serious symptoms now normal. [Chronic Illness Cat] What warrants doctor visit? (Source)

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.

Free MS Workout or MS Yoga DVD

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.)

National MS Society Chapter Annual Meeting

Enough stuff?

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.

College & Chronic Illness

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.