When I move on from this world, they will have to pry three things out of my cold dead hands – my Coop pillow ($$$ totally worth it $$$), my Lunya sleep mask (fyi-I don’t look near as sexy as the site model but it’s still amazing), and my weighted blanket. Then again, I may just take them with me.. they’ve helped that much.
Quality sleep for me is ever elusive. Often I wake up several times on a good night and almost always around 3 am (ish).. what’s up with that? Once awake, any minute noise keeps me that way.. which makes the long drive to work that much more fun.
I have tried many things – failures being earplugs (ouch), sound machine (please refer to minute noise reference above), and even wine.. okay the wine works but one can’t drink every night. Currently I am exploring – hot tea, aromatherapy mister, and a set bed schedule that includes thirty minutes of down time. That last one though hasn’t really been kept to.. working on it. If you ask me, I am finding these mythical tales of “waking up refreshed” a bit suspect.
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.
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.
“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.