Category Archives: fibromyalgia

The thing that broke me…

There are a lot of things that I struggle with on a daily basis. The fact that I am able to life a relatively fulfilling life despite these challenges usually makes me feel like a fairly strong person. So when something breaks me I expect it to be something bad, really, really bad.

Imagine my surprise when what broke me this week was my ponytail.

If you have long hair I am sure you have styled it in the morning only to have your hair follicles hurt when you take it out at night. The pain is minimal and fades fairly quickly and I usually feel it is on par with hitting your funny bone, odd and painful but also a little silly.

It turns out with Fibromyalgia that is not that case. I have had my hair short for a few years since my doc told me it could be making my headaches worse and shorter hair could help – it didn’t, it just made me go through the process of growing my hair out again – so I haven’t had to deal with a ponytail for a few years. Yesterday I wore my hair in a high pony to go with a cute head wrap I had gotten to hold ice packs. I came home. I took my hair out of the pony and instead of a silly odd feeling of hair follicles relaxing I had the sensation of razors tearing through my scalp. It lasted for hours, this feeling of sharp cutting pain along my scalp. Then it subsided into the feeling of being horribly bruised. I still feel that way. Horribly bruised. 48 hours later. I can’t touch my scalp because I had the audacity to wear a pony tail.

What the actual fuck?

I looked up Fibromyalgia and hair pain online and of course it’s a common symptom, and oh joy, often comes with hair loss.

I lost it. I cried and shook and scared the crap out of my husband. Why?

Because I don’t even get my hair.

This fucking disease has taken my chosen career. It has taken my dancing in nightclubs and taking the kids to amusement parks and riding on roller coasters and working full time. It has taken my volunteering for numerous causes and my involvement in the PTA and my ability to think straight and unplanned adventures with my kids and my ball juggling and my night driving and party attending and my singing loudly to music and my sleeping well and wearing tight jeans and high heels and so many other things. It has taken and taken and taken and now? I don’t even get my hair.

I can’t have long hair and style it up in my pretty updo’s like I used to without setting myself up for days and days of intense discomfort. I don’t get to do french twists that set off my cheekbones and messy buns that are flirty and fun. I don’t get to decide how I want to look because the asshole disease that runs my life has decided to take that away from me too.

I am sure I will come to terms. I will accept this and find a way to cope but right now I only have one thing to say.

Fuck you Fibromyalgia.

Fuck you.

Up and at ’em…

Things are brewing. My paintings are gaining a modicum of popularity, a complete stranger bought something from my Amazon Handmade page, and Pirate Fest is coming up in about three weeks.

I am determined not to give in to the desire to flounder.

Having said that, I have something I have to do and I admit I don’t want to.

I have to, HAVE TO, treat my body better. I stretch a bit and walk almost every day, but it’s been years since I really pushed myself to exercise. This is really stupid of me because all the literature says the only thing that really helps Fibromyalgia is exercise.

In the past I haven’t exercised as much as I should because I was working. Now I am not. I no longer follow the 40 – 60 hour a week schedule I used to use as an excuse to stay away from the gym.

So my doctors have suggested it, the literature suggests it, I have time for it, why am I not shaking my booty?

I think I’m scared. I think I am afraid I will be disappointed or embarrassed by my limitations, which really is stupid because I’m the only one whose going to be around really so why would I be embarrassed?

Ugh. Maybe it’s just easier to walk and call it good. Who knows. All I do know is the excuses are gone, the medical situation calls for it, and if I am really going to try and manage my symptoms with minimal medication I have no excuses for not exercising my way to a more well managed disease.

So. Swimming twice a week. Crunches every day. 15 minutes of yoga when I wake up and 15 minutes before I go to sleep. Arm exercises with my wrist weights on when I am resting in bed. Then maybe, just maybe, I can get myself to run again.

Time to program the new Vivofit, set myself some goals, and get up and at ’em.

A new path…

A while ago I posted about the benefits of giving up.  Since then I have been dealing with my pain mostly on my own. I have a muscle relaxant to take the edge off my fibro-stiff muscles and an anti-depressant to take the edge off living with daily pain. For emergencies I have vicodin, but I can only take one a week max.

So far I am happy to report things are pretty good. I still hurt every day. I still get stiff and sore and feel my joints like no 41 year old should. I still have a headache that will never, ever, end. However, I have my life back. I no longer spend three to four days a week making my family drive me to different specialists and physical therapists. I no longer have the added pain of recovering from procedures that don’t really seem to work. I am no longer dealing with huge amounts of medication side effects as my doctors cycle through them trying to trick my broken nervous system into thinking it’s better.

Instead I have time to blog again. I work in the garden. I paint. I paint a lot. I read and play games and hang out with my kids and take my dog for long walks. I cook dinner and can sometimes clean the house. I kind of have a normal life again.

I’m still falling down on spoon management from time to time. Today I just had to paint a new Empathy Fish and while I felt good during the painting process I can already feel the stress my decision caused my body. I got ambitious and tomorrow I will pay. However, so long as I am patient with myself I can manage this illness with exercise, mindfulness, a couple of helpful meds, and art.

Art has become my solace, my healer, my place of peace. Somehow in the last month I have turned on whatever neuron housed my painting ability and I am loving every minute I hold a brush. My headache recedes into the background as I mix color and create shapes and play with light. Somehow I can paint, nearly every day, even though everything else takes careful moderation. Maybe I have finally found something that takes fewer spoons than everything else.

So I have said goodbye to my life as a busy lawyer and advocate with a million charity events and causes to attend and am embracing my life as an artist. I will create, if nothing else, a place of less pain for myself and with any luck a few pieces of beauty that bring joy to a small section of the world.

Today I write this to remind myself during the hard days that I have days where I feel like this. Where I feel hopeful and strong and capable. Days when I don’t feel like less than my old self. Days when I even feel like more than I used to be.