One of the things that truly sucks about Fibromyalgia is that you are going along your life in a generally halfway decent state of activity and stout denial and then BLAMMO you can’t do anything.
Today I woke up and I was winded going downstairs. Making coffee was too hard for me to do. I tried to assemble a new catbox cover and opening one side of the box wore me out.
I spent the first 5 hours of the day lying on my bed in my pajamas listening to a book on tape because it was all I had the energy to do. Even now, writing this, my fingers are aching and my hands hurt and I am getting freaking winded from typing.
I don’t know when I will wake up again and have the energy to go to the gym or walk the dog or even bathe. Worst of all, right now, it’s even hard to breathe. My chest muscles and the nerves in my chest seem to believe that lifting my lungs up and down is a little too much for them to handle. I’m gasping sitting still and dizzy going downstairs.
Two days ago I walked 3.5 miles with the dogs happily and without getting winded. Yesterday I swam for 45 minutes and though I could feel the weakness settling into my arms I could still use them. Today I am a twisted, broken, incapable thing.
This disease sucks. A lot.
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.
I never believed I would get this far and now I am nibbling my nails and hanging on tenterhooks because I only have 6 days to get my remaining backers or the project fails!
It’s so much stress and anticipation. I had hoped that offering this Kickstarter would bring my art into the broader world, and it has, but it’s much more difficult to be mellow about failing when I am this close to success! I am not sure I would do this again.
If you want to peek at it you can visit bit.ly/make100paintings
Here’s one of my new fishies:
I did a thing.
Kickstarter has this program called Make 100. They started it last year and it was a success do they opened it up again this year. The basic gist is you come up with 100 unique, limited edition things you promise to make. You build a project on their platform and if you publish it with Make 100 in the title between January 1st and January 31st they will market it with their Make 100 tag.
I have tried to Kickstarter before with next to no success so I figured why not try again.
I decided to make 100 5×7 original paintings. I set the funding level at a reasonable percentage of those and I launched my project.
Now I am 31% funded with 60% of the timeframe for funding left.
I have never gotten this far on Kickstarter before and I find myself equally exhilarated and anxiety ridden. Will I get there? I’m on target to get there statistics wise. How can I make sure I get there? People really seem to like my stuff! Can I make sure I get there? Am I just dreaming? What’s going on!! AaaaacccckkKK!
It’s a little intense over here in my head just now. I advise you to stay a reasonable distance from it.
If you want to take a peek and check it out please visit bit.ly/make100paintings
See, I even got a great short-link. Now, I am going to close my Kickstarter dashboard and stop willing the funding level to increase because I am pretty sure that is the one thing that will not actually work.
I don’t know about you but having feelings and chronic daily migraine sucks. Every time I get angry my head hurts more. If I get anxious or nervous, more head pain. If I cry, boy, if I cry you may as well have hit me over the head with a bucket of bricks and I am in bed for days.
Which is why I have magically transformed from a deeply emotive person into one of the most emotionally patient people you will ever meet. Tragedy is met with quiet, anger is met with quiet. Anything else literally hurts me more than it hurts you.
Sometimes, however, this fails, because life is a harsh asshole and the people you love say nasty things and the people you count on let you down in massive ways and the coping skills you have developed over five years of constant pain go down the drain in a torrent of tears that leaves you shaking and buried under an avalanche of pain.
Sometimes it’s necessary to lose your shit. Even if it means you are going to hurt, because sometimes the emotional pain of your existence deserves as much release as the physical pain and as far as I can tell no one has found a pill to cure the pain of heartbreak.
After all, no one has found a pill to cure the pain of headache either so it’s not like heartbreak is alone out there.
So. Get your laundry done. Pay your bills. Set up some leftovers. Set your ice packs in the freezer and your heating pad by the bed. Pull the black out curtains shut. Then cry. Let it go.
It’s not doing you any good in there anyway.
Unfortunately my Trigeminal Neuralgia has reared it’s ugly face again and I am really struggling with pain. Not the heavy rhythmic daily pain of headache but rather the sudden, intense, mind-numbingly awful face pain that rips into my cheek and sets my gums on fire, lasts an eternity of minutes, and then fades as suddenly as it arrived leaving me a quivering mess of aftermath.
Like most spoonies I am very good at going still and keeping my face fairly passive and not showing my sudden and intense desire to curl up into a ball and tear at my face and scream because I don’t want to freak anybody out or have to answer EMT questions or for that matter any questions while I am experiencing that kind of pain.
However, as I descend further into more frequent bouts of this particular hell I will be hiding out in my cave more and more so I can curl up in a ball and make all the animal noises without freaking anybody out. Which got me thinking about my cave and the small, low spoon cost, things I do on a regular basis to make it my safe place. I thought I would share those with you.
- Don’t expect perfection. My space is often a bit messy. After all, I don’t always have the energy to keep it picked up and clean. I forgive myself the un-put-away slippers and pillows and pajamas and the unfolded clean laundry when I can’t get to it. However, the following are things I do to make my feel more comforted by my space when I am stuck in it for a while.
- Make the bed. It’s a rule for me. My morning ritual includes making the bed because there is a high likelihood I will end up in the bed and I want to feel as though it is an attractive and comfortable place to be. I also have leg rest pillows and a throw blanket on the made bed to support me in the event I end up there and to keep me warm without having to unmake the bed. Also, any bedroom looks nicer when the bed is made, regardless of what else is going on with it, so you make a big impact on your space with very little effort.
- Fold the laundry. If you have the extra spoon, fold and put away your clean laundry. It always gives me a sense of satisfaction and helps me feel better to not have an obvious example of my lack of energy staring at me from the corner of the room while I am convalescing.
- Put your dirty clothes in a laundry basket out of sight. Once you have an empty basket put the clothes that have been dropped on the floor or a chair in the basket and then put it in the closet or another room. Out of sight. You clean up the space you are stuck in without leaving another looming reminder of the laundry you must now do in the corner of the room while you are convalescing.
- Have a distraction close at hand. If you read while you are in pain, have a book or two, if you crochet, have a basket of yarn. I have a small end table with a basket of watercolor pens and some paper next to the bed. That way if I am starting to feel better but should still really be resting in the aftermath of a pain spike I can take those out and do something without spending too many spoons.
- Scent and lighting. This one is very personal as many people are triggered by scents and light. I have a low wattage warm lamp I can turn on when I am having some bad photophobia that casts a cheerful glow about the room. Sometimes I can’t use it, sometimes I can. I also have NagChampa Incense that I burn. It is one of three or four scents that don’t make things worse for me. I find the pleasant scent and lighting makes me feel as though I am settling in to relax instead of settling in to suffer.
- Medication and Water. Find a way to keep them next to you. I have a pitcher of water in the room so I can refill my glass with very little effort and only need to ask for help refilling the pitcher. I also keep my medication next to the bed in an attractive box. Within reach but not likely to fall over while trying to retrieve one particular bottle, thus requiring me to get up and clean up another thing.
That’s it for today. It’s cold and snowy and my face is trying to kill me so I think I’ll curl up in my space and rest a bit.
I wish you a low pain level day!
Look! I made it back to the blog within a few weeks! Maybe I will get off my tuckus and start writing here on a normal basis again.
I’ve been thinking about getting into the realm of advising people on managing chronic pain with minimal medical intervention, after they have exhausted medical attempts without success of course. If you can find a working medical intervention use it, this shit sucks.
I have been painting a lot lately because I find it gentle enough to do on bad days and distracting enough to use as a pain management skill. As a result I am taking some online classes in art therapy coaching. Why not right?
So I got to thinking, what do I do to manage a headache that is nearly six years old? What are the things I do now, without thinking, that a relatively new daily headache sufferer wouldn’t think to do. So I thought I would give writing them down a try.
- Forgive yourself all the things. If you paint other people with your own disappointment at your limitations you will harm yourself. Most likely they are feeling sad that they can’t help you, not disappointed in what you can’t do.
- Set reasonable goals. Recognize that “Shower and dress” is a perfectly reasonable goal for an entire day. Feel good when you accomplish it.
- Be proud of your accomplishments. Do not, under any circumstances, compare your current accomplishments with your past accomplishments. They will never measure up.
- It’s okay to mourn your losses. You don’t have to keep a stiff upper lip. You’ve lost quite a lot, if not nearly everything. That’s hard. Cry, yell a little, talk about how unfair it is to someone you trust.
- It’s okay to have fun when you feel up to it. Especially early on friends and family can take a good day or a few good hours as a sign that you are getting better. It can start to feel like you should always behave in a way that reminds them you are sick so you don’t provide them with false hope. You don’t. If you feel decent, enjoy it. Bask in it like sunshine.
- Talk about what you are going through. I’ve found people are really understanding and cool about chronic illness so long as you give them a chance to understand. You can’t keep the bad parts hidden and expect your loved ones to magically get what you need. I tell people there is a high chance I will need to cancel plans with them when I make them. We reschedule a lot. I also tell them I may need to change plans from fun evening out to low key evening in. I talk about not being able to be in loud places or places with too much perfume. So long as I have been open about my limitations I have never had anyone be shitty with me about them.
- Don’t let your own guilt push you beyond your capability. You will make your next day much worse if you do. Possibly the one after that.
- Don’t self isolate. Find someone who experiences something similar to you to talk to, even if only over text or FB. Chronic pain isolates you naturally and it’s easy to turn into a hermit. I fight that every day. Try to find ways to join in activities with your friends and family, even if you have to ask for emergency back up plans. I have had to ask for friends to let me lie down in a spare bedroom until someone could come pick me up.
- Exercise. This one is tricky because it depends on your issue but I find exercise helps both my chronic migraine and my fibromyalgia. I walk whenever I can and try to add swimming and yoga regularly. Sometimes I succeed for weeks on end, other times I take weeks off. Chronic pain is like that. That’s ok too.
- Take care of your caregivers. You have limitations and they restrict what you can do but make sure you spend some of the spoons you have on the people who help you out the most. Do the extra dishes for your mom or spouse when you are feeling ok, listen to the troubles they are having even if you aren’t feeling ok. Hold their hand when that’s all you can do and always, always, tell them how much you appreciate their efforts and help. Make sure they feel they are more than just your caregiver, that they are your friend or mom or dad or spouse as well. Find a small thing you can do regularly to let them know it isn’t all about you despite the fact that you have a chronic illness.
That’s what comes to mind tonight. I am sure there will be more as I try to sleep, unsuccessfully. I hope you are all as well as can be and I wish you a night of good sleep and low pain levels.