Back to work and flaring up

Today was my first day back to my regular work schedule after nearly two weeks off. I only worked one day in the last two weeks and boy was it nice to have a break, a chance to catch up on rest and a chance to spend time with those who are close to me. I've been having increasing flare ups in the recent weeks and even with an increase of my medication, the attacks are slowly becoming more frequent and more intense. It's made me really question my options and what I can count on for the future to ensure I meet the requirements of just living - rent, food, clothing, heat....etc.

As a person in my mid twenties, I have been doing my best to make it on my own and to meet all the necessities of life. I teach music one on one after school hours a few days a week, I work part time in a music store and I nanny a couple of days a week just to meet my basic needs. I love what I do but have found it difficult to find a combination of jobs or one single job that enables me to relax a bit financially and to give me the flexibility to "be sick" once in awhile. I've taught many lessons through the horrible pains of TN and I've chased around 3 children under 3 with a bad fibromyalgia flare up trying to get them all bathed, fed and to bed. It's always in the back of my mind that I might have an attack and I am a slave to the medication that is supposed to manage it.

Reading another members blog and knowing from my own experience, I so wish there was a way to identify that I could use some extra understanding when I'm out in public, whether it be when I'm trying to stand on a packed bus when I really should be sitting or when I cripple over in pain when I bend down that item on the bottom shelf. I look so normal on the outside and I've always pretended to be happy and great as a cover to my problems but some days I'm so darn exhausted of pretending to feel great and I just want to take that seat on the bus that the highschool teens gossiping about the boys they took to the dance are sitting on. Where's our sign? Maybe I should use crutches so that people would pay me a little more respect?

Anyhow.... My meds aren't working so great lately and I'm trying to get back into a regular routine at work and with my students. It's so rough right now but I am doing my best.

What do you guys do to help/prevent flare ups when you're at work or in public? What do you do when you experience an attack at work or in public? Any tips?

I wish I had an answer. I am in my mid-20's also and the thought of living with this for the rest of my life is terrifying. I'm always scared the meds are going to stop working, that I'll have breakthrough pain the meds can't control, etc.

I'm "lucky" in that I am currently in nursing school and work every other weekend at a hospital so most of the people I am around are understand. My boss/supervisor doesn't know and I don't know how understanding they would be. Everyone else has been great. Professors have let me have my lidocaine at my desk during tests, fellow students have been understanding, etc.

I am scared as to what will happen when I am actually a nurse. What happens if I get an attack at work? I certainly can't just leave. Opioids not only don't work but I couldn't take them at work even if they did. And what about the next 50-60 years?

I don't know. I wish I did but I don't. It scares me too.

Hey studentNpain - I totally get where you are coming from. The way I try to look at it, we may have to live with something excruciating but medical breakthroughs happen everyday. Also, TN, while brutal and unpredictable at times, is not degenerative like MS or ALS. I've watched a couple of relatives of mine pass away from ALS and every day I find it hard to get out of bed, I try to remind myself that no matter how hard it gets, I can still communicate and I still have days where I feel relatively "normal" enough that I can go for a walk or a hike or enjoy an evening of board games with my partner. For that little bit of sanity, I am thankful.

That being said, huge hugs to you cause I know how incredibly frustrated you feel and I have definitely gone through my really spots and contemplated every option and possibility of a future, including that scary little word that starts with an S that none of us probably want to admit to thinking but probably all have at some point in our TN journeys. Hang in there and hugs! Hit me up anytime and we can talk!