There’s nothing more dramatic then when your husband thumps you on your hip playfully and you body explodes into a bout of firey pain.. and you lose your grip on being nice. It feels like I have just been jabbed with a red hot poker and often I am not polite about it. Thank the universe that the husband is pretty easygoing and doesn’t get butt hurt by my outbursts (mostly). I get it completely from his aspect – it is just a little playful thump and now he feels horrible to have hurt me. I am sure it’s confusing because sometimes it’s all over, and sometimes it’s just certain spots. There’s no constant, so how do you judge where you can and can’t touch?
It happens on occasion when I bump into or rub against things as well.. it doesn’t even have to be a hard knock. Pre- fibro, I thought this was a weird symptom of my sensitive skin but later realized it’s a pretty common occurrence among sufferers. It also sucks, in case you were wondering.
There are days when my clothes turn against me and fell like sandpaper on my skin and sometimes my scalp gets sore (and sticky, like it’s raw and sometimes there are actual sores – anyone else have this pleasure?). I have to wear my hair up at work at all times and generally just leave it like that because it’s easier, often this doesn’t help. Sometimes just getting a hug can be excruciating.
By far I find this one of the most perplexing symptoms.. and I have yet to find anything that really helps. So if I avoid being touched.. it’s really not you, it’s me.
I am not even going to lie and say I ate just this one cookie and had the small cup of coffee. This was the next to last one and I ate them both. I baked them two days before and I ate three while they were warm. I had four more for breakfast the next day.. then four more for pre-dinner. This day (before the last two).. I had one for breakfast. Yes, my husband did give me the side-eye but I chose to ignore him.. I was already in a flare.
For the record I woke up the next morning hurting all over, and I was exhausted before I got out of bed. My wise husband didn’t say anything. What did I learn (other than peanut butter cookies are a super delicious comfort food)? That excessive amounts of sugar probably exacerbated my flare, but.. peanut butter cookies..
One thing that hasn’t eased yet is the fatigue. I still feel tired and stressed most of the time. I still want to not get out of bed (as if the fat cats would allow that). I don’t want to do the hour long drive to work, or exercise, or shop.. basically coffee keeps me going because otherwise I would avoid all the big effort activities that need to get done in a day if I could. I must say that I do not enjoy this adulting that I so looked forward to as a child.. except the wine, I do enjoy the wine.
My biggest stressors, of course, are everyone’s biggest stressors – work, money, and chores. I make them even more so in my head because of my anxiety. Right? Adulting sucks. It is a no brainer, however, that I need said job.. and so far have been lucky to have one that pays sufficiently enough that I can afford life. It has not always been so and there’s no guarantee that it will always be so. Bills must be paid.. there’s not much to do about that.. at least not until that winning lottery ticket finds me.
To make the day more workable, I do shoulder exercises at my desk since that is where I carry the most of my tension. I get up to do some intermittent walking when I can and my fit bit nags me into it. I Listen to interesting podcasts on my long drive. This all helps to distract from some of the pain usually and thus far I have thankfully enough not had to call in with it.
Against my doctor’s advice, I chose not to have her fill out the FMLA paperwork in case of unexpected absences. I understand the value of having that protection in the event that my condition worsens, but I feel where I am that there is an unspoken stigma that I am not prepared for. I hope to have my job to be able to pay things off and save up for the in case in the coming years.. I am not sure filing official documents would be fruitful to that end. As my boss likes to say, “perception is reality”. Even though I find that wrong and unfortunate, I feel like even if I never used it, that view would still linger.
For now, I will keep working on ways to manage my stress, rest when I can, and simplify other areas of my life where possible. The way I see it, less bills = less $ needed = less stress.. and since adulting remains on the table, I will worry about exercise and chores another day.. and maybe have a glass of wine instead.
One thing I am learning with fibro is that I have to pay better attention to what my body is telling me. I also need to learn to let go a bit and better embrace my new normal. I tend to, even now, overdo things. I spread myself thin and then when I can’t do, I feel lesser or worse.. resentful. This had spilled over most often into my relationships.
These days I have stepped back quite a bit. I spend most of my time at home. I reach out less often because, frankly, I am still spending most of my time trying to figure this out. Yes, I have lost contact and most have dropped away but I can’t feel bad about that. I am doing what is needed to heal.
I spend good days with those I love and the not so taking care of myself as best I can so I can have more good days. When I find myself troubled with something that needs to be set free, I have a little ritual of letting go.
I light a candle, often one with a soothing scent if I have one on hand.. and let’s face it, I am a bit of a candle whore so that’s usually not a problem. I write what it is on a peace of paper (or a bay leaf from the kitchen – very cleansing) and hold it to my heart. Sometimes I do this sitting by my hearth where I keep a place for my ancestors, and I tell them about it. Sometimes I just speak or hold it in my mind. I say why I need this released.. sometimes it’s just a simple “I choose to no longer hold space for this”, and then I set it aflame. This is the burning away of that which is no longer needed.
I may return the ashes to the earth of the garden and let the wind peacefully carry them away. If at anytime it sneaks back into my thoughts, I acknowledge it and set the thought aside. I have already released this, no point in holding on to it or bringing it back. I can only do my best, and right now I am healing and making space for better things.
My first visit to the pain clinic, post diagnosis, went so much better than I had expected. It was smack dab in the middle of the flare and I think my first words were something like “don’t judge by this, I think I just overdid things”. She took pity and gave me a shot of some relief before I left.. this helped me well through the day. Also, instead of monthly, I do not have to go back for four with the option to call if needed. I realized straight away how much I was in my own head that last visit and working in the automatic assumption that the world was plotting against me.. equipped with a list of questions in hand this time, I felt like I articulated my issues a lot better.
One thing I have really decided to set out on is to look at things as positively and productively as I can. I think making that list of concerns really helped any anxiety I was having about the visit and get things into movement. That’s not to say it will be all fluffy bunnies and rainbow unicorns, I am sure there will be days down, but I am going to make a valiant effort to dwell less and enjoy the moments I can.. mindfulness is my new goal.. that and trying everything I can to find workable solutions for coping where I can on those non bunny filled days.
The first pain manageable post drug days (I am still coming to terms) really drove home how much I had lost over the past few years. Not just the relationships – sometimes you’re there for people who don’t have the capacity to be there for you at that moment (and vice versa) and it’s okay to have those people exit. I had even offered the husband an out but he stubbornly sticks with me through the exhausting. It, the manageable days following, revealed how much of my day to day I had given up.
After a few weeks of adjusting to the meds, once my pain was to a low roar (and even some days a meow), I was up and helping around the house. I wasn’t grabbing as much take out in an effort to go straight to bed. I even cooked a few really nice healthy dinners without dropping anything. I spent an entire day in the garden trimming.. and even had a glass of wine after. I was able dye my own hair and rid myself of the stubborn grey streak I had been ignoring. I had all these joyful day to day moments back.. it was glorious.
Then one day, after moving furniture high on my newfound normal-ish body, I had what I was to eventually learn was a flare. The concept of flares was unknown to me. Unlike some of the stories I encountered, I had pretty much been in pain most days. So, after a few weeks of feeling functional (and maybe reveling in it a tad too much), the fibro Gods gave me a smack down. There was a smidge of excessive whining, a return of much of the old pain holding hands with some new and exciting pain.. joy (not), and a lot of taking things easy. I realized changes were in order if I was going to live with this new me in some sort of peace..
Here’s what loads will tell you but that I stubbornly disregarded about living with chronic pain – it takes a toll on every facet of your life. I was so busy soldering on that I failed to notice (and I tend to be a bit self-centered, which I hate but there it is). I slowly stopped doing much of what I enjoyed. I lost friends, depression took my self away, I aged more visibly, and I stopped taking care of myself.. hell, somehow it became too difficult to even wash my hair most days. I stopped interacting as much and often when I did, I was interacting negatively. I was tired all the time and all I really wanted to do was sleep.. which escaped me because the pain kept it at bay. This was me existing and honestly, part of me was resigned.. plus, my bed is super comfy.
Then came the reactions, post diagnosis, and not all of them stellar. I think it really made me stop and adjust my attitude a bit. I am fortunate for the support that I do have in those closest. To the others, though, I started out guarded. I tend to be a private person. Then someone made the offhand joke that now I have a free ticket (workwise). I silently wished for them to have to live a week in my place while I politely directed them to read up.. no one wants this ride. My better self whispered to be kind, they just do not know. I decided then to be more forthcoming in future in hopes for better.. but a fire was lit. I will do what I can to feel as healthy as I can. I will not back down or give up on myself. I don’t need someone to judge my pain, I live it everyday. It would be nice to encounter open minds and understanding.. otherwise I kindly request them to step aside. I am on a journey and need all of my energy about me. I choose not to waste it. I made my peace with the fact that this was my new normal and the rest would just have to be figured out along the way.
“Side effects include nausea, constipation, drowsiness, difficulty sleeping, dizziness, etc, etc..” These are all the things I should have read before taking the Cymbalta. I didn’t. I resigned myself to my fate and I took the pill. I do wish someone had mentioned the withdrawal aspect to me ahead but then I probably wouldn’t have taken it. Thankfully, it was the lowest dosage available since my doctor was aware of my very vocal distaste for taking any type of medication if I don’t absolutely have to.. yes, doctors love me (insert sarcasm here).
I steer clear. My mother had a dependence on prescription drugs. Having grown up living that, well.. lets just say I have hang-ups. Add to that the fact that medicine almost always affects me adversely.. I steer doubly clear. This should give a hint to what level of pain we fibro sufferers feel.. let me say it again – I TOOK THE PILL.
Now, I am not going to lie and say it was magical. All of my symptoms didn’t disappear and I lived happily (and pain free) ever after. The first week or so was not fun. I was dizzy and woozy all the time.. and I drive an hour to work everyday. I had random sharp shooting pains. I had headaches. I was super queasy. I’d rather cut off my leg then be queasy. I was constipated (I know, I know.. but it’s important because I have diverticulosis). I would fall asleep for a couple of hours just to be restless all night as the slightest sound woke me. I was tired.. well, more tired. I would have just stopped it but by that time I had read of the horrifying withdrawal.. so I stuck with it.
Here’s the thing – for me it worked. Most of the earlier side effects subsided eventually and my pain went down considerably. I felt near normal on many days. I am glad that I didn’t read into the scary stuff and am most days better able to deal. I am aware it doesn’t work for everybody, but so far it has given me some of my life back and for that I am thankful.
“Did you get the message that was left for you?” This was the first thing said to me. “Yes”, I replied and then proceeded to explain that I was worried.. so many people who’s stories I read seemed to have lost a good deal of mobility. I already had days where I had to shuffle through. I was just in the garden that past weekend trying to plant under the tree and the pain in my hips was excruciating. There was a bit of commentary on how we tend to do too much as women and sometimes we give up and resign ourselves to the pain.
I wasn’t sure if this was meant to commiserate or as a hint to suck it up. I was in my head a lot and feeling very dismissed. I forgot all the questions that I had wanted to ask and my steadfast rule on not taking medications flew right out the window. I just wanted some relief. I just wanted to be normal. That day I drove around for hours, prescription in hand and crying. Then I went home and cried some more. Later that afternoon, I did suck it up.. and I trudged into the pharmacy.
I’ve read that it’s often called the unseen disorder – fibromyalgia.. difficult to diagnose, unseen symptoms, and a stigma of disbelief. I have only recently been diagnosed after two years of misses, multiple tests, and an escalation in pain carrying over ten years. It was my husband that insisted I finally get checked out. Process of elimination, I was told.. my diagnosis was left on my voicemail. Harsh as the delivery method sounds, I was glad to have a name to put with the face. Soon after, I would revisit my rheumatologist for a game plan.. and meanwhile, since I didn’t know much about it, I put on my big girl panties and started researching.
Once I passed my “what fresh hell is this” stage – there isn’t a lot of positive vibe out there, I realized something.. those of us living with this, WE are the unseen. We often wear a mask to push through the pain, and when we are lucky to have days where we feel almost normal, we carry that stigma of disbelief. We are perceived as being okay at best.. faking the extent of what we feel at worst. There are no definitive tests as of yet that we can hold up and say to the universe “see, my pain is real!” So much misinformation exists. It’s hard to keep your chin up in such circumstances, but I am trying. I wish I had the answers. I am at least blessed with a supportive husband and I have a doctor who is working with me. I can hold my head up and speak from the depths and say my pain exists.. and I support those like me who need to be seen.