blame it on New Orleans

As my New Orleans trip crept up on me this past August, I quickly realized that my body just was not going to cooperate. As much as I wanted to go, I was not up to the walking. I gifted my tickets to someone unknown who really wanted, grabbed onto that bit of joy, and decided to make the most of my stay-cation.

First, let me say that it all started off very smart and full of good intentions – catching up on housework, getting in a husband date, reading.. but then came the Prosecco. With it came late night movies, lots of indulgent food/sweets, and way too much drinking.. I am all about some nibbles and wine.

By Sunday I was exhausted and had way too much sugar roaming about my system. I was stiff and hobbling about like the old crone that I was pretending not to be. By Tuesday I decided my evil, albeit delicious, new bubbly friend and I needed to go on a break. You would think that I would learn something by my age.. I blame New Orleans.

*much belated post, in my brain fog I had forgotten

allow me to complain a bit

September, I hear, is pain awareness month. Normally, I don’t like to detail my pain. I try not to dwell because I want to enjoy my now. Often I dread the husband asking how I am feeling today because I feel sure he has to be tired of hearing it. Usually I just give him the highlights and try to move on. I may share with people who also live with chronic pain.. who knows what we can learn from each other in managing it. With most other people though, I try not to.. I don’t want “the look”.

You know that look.. rolled eyes, that just suck it up sitting heavy on the tip of their tongue. I dislike it intensely and so I do my best to avoid it. I know loads of folks have it worse. I get it. However, this is every day for me with no end in sight and my feelings matter too. So, in interest of pain awareness month, I am not going to go through everything but here was one day in the life..

I get up after my third alarm.. having woken up several times in the night, I am exhausted. I have already cut off the other two and am running late but I still don’t want to get up. It’s an effort. Moving hurts. Laying on my side hurts my shoulders.. the sockets feel like there is a sharp ice pick being continually jabbed in them.. it is what wakes me the most often.

Lying on my stomach is the most comfortable but is the worst position in the long haul. It makes my neck creak and the muscles sore and stiff. Lying on my back makes my arms go numb. I get chills in my legs and my feet cramp. The first thing that normally gets me going is grabbing the blanket to move because that sends a jolt of searing pain through my right hand.. and I have to keep repeating it because my hand is swollen and stiff and doesn’t always grasp the blanket. I often cry quietly because it is just so painful. I sit up and try to start working out some of the joint stiffness so I can get dressed.

I trudge slowly into the bathroom because I am never sure if my knees are going to give out or if I might still be woozy if I get off my cymbalta schedule.. or probably on top of these I stayed up too late because I want to spend time with my husband in the evenings. Sometimes I push through my skincare, etc because I am trying to feel normal and take care of myself. I feed the fish and head downstairs.

The younger fat cat will be on the step so I automatically death grip the banister in case she gets frisky. Stairs are incredibly hard and painful for me. Every step is like nails being driven into my knees and my ankles. I am not sure if my knees plan to betray me and I try to go slow. I feed the fat cats and crouching, try to hold my body steady to give them the kitty loving they deserve. I start the coffee and food prep portion of my morning. The smoothie machine is tough because my hands scream at the twisting motion needed.. however I also have to make the magic potion. So far so good.

I gather all the things I need to take with me to work. It is an hour drive and my joints ache after awhile but the car ride is doable on most days. Sometimes my hands lose grip on the steering wheel or the pain of sitting in one position gets to me but it is what it is. I will be stiff by the time I arrive so I am thankful to get out of the car.. except this week. This week my hips have been very painful and even the skin of my lower torso.. so when I sit they get stiff and my clothes feel like fire. When I walk, it feels like the bones are scraping in their sockets and my clothes still feel like fire. Too bad they frown upon coming to work naked. I make it through the day though and manage to avoid having to go into the warehouse.. the concrete floor hates me.

The drive home is pretty much the same in reverse. If I am lucky I don’t have to brave the anxiety of the grocery store and can go straight home. I try to avoid the glass of wine calling my name and the siren song of relaxation it promises. I talk myself into a warm decaf instead. I do any chores I can manage and by then the husband is home and we usually have dinner and watch some tv. I try to remember to take my meds on time. I know I will have weird muscle twitches and who knows what else if I don’t.. plus I still have to climb the stairs and don’t want the odds stacked against me. I am often exhausted and just want to sleep but I know I need movement.

Sometimes we go for a walk. I try to get to bed early and on schedule knowing I have a repeat performance the next day early but I like to sit with my husband. The winning party varies. No matter what, I am still thankful I am able to do this much and enjoy life. Hug your person who is in this same arena, tell them you love them because we need it most days.

s

sleep eludes

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.

what I have learned from the fat cat

My voluptuous polar bear sized beautiful baby boy has taught me so much these past few months. He is the most chill cat that I have ever had and even though he has been sick for over nine months with no clear diagnosis, he really gives no ducks.

He still enjoys his day to day.. belly rubbing, sofa scratching, water sports in the kitchen floor, and of course most of all – sleeping. He doesn’t over tax himself and when he feels like I am not appreciating the moment (or him) enough, he gives me a sharp bite in the soft meat between my toes and brings me back to center.. total kitty zen.

mind over matter

The past weekend was a mind over matter sort.. Friday I cleaned my car and cooked a nice healthy dinner. Saturday I finished the dreaded mopping. By the evening my body was killing me but I felt like I stuck to it and accomplished something. I rewarded myself with a tiny bit of chocolate cheesecake and some red wine.. okay, a lot of bit of cheesecake but I earned it. It caught up with me by Sunday and I slept most of the afternoon.. totally worth it though to have that feeling of getting things in place. I am still learning my balance.

This week’s rituals for living challenge in my planner asks me to sit in front of a fire (apparently they don’t have a grip on what summer in the south feels like) and to imagine it burning up any negativity.. in its place filling your body with light. I spent Saturday morning early while the house was quiet sitting at the hearth with candles lit doing just that. I plan to repeat this again in the coming week. With my eyes closed and feeling the candlelight on my face, I felt much more at peace.

finding my way in the fog

Fibro fog.. it’s a real disrupter. Pre-diagnosis, I referred to this as extreme old lady brain. I didn’t understand why I couldn’t remember even the most simple things and on occasion even why I was where I was.. or sometimes even where I was. I joke, but at its worse it can be a bit scary.. not to mention all the side eye you get standing in the middle of the grocery store wine section with a completely blank expression for an extended block of time. True story – I had to message the husband to ask why I was there.. to which he amusingly replied, “Do you know WHERE you are?” Cute, cute.. I love him so much the more because he made me laugh in the moment.

Awhile back I bought this rituals for living dream book and planner. It was one of those schmancy frivolous purchases that I was lured into with a good sale. It turned out to be a life saver. In it I can keep track of what I want to accomplish overall and in a week. It helped me clarify my priorities and establish a simplified breakdown to make things a bit easier. What I liked about this one is that it has a place to set daily intentions, be creative, gives a weekly challenge, and has a place for you to express daily gratitude for one small thing in your life so you don’t lose focus on what is really important (hint – it’s not the dishes).

Now, I don’t feel you have to have a fancy pants planner to do any of these things, you can use any planner available. You can log in your own goals, inspirations, gratitudes, creativities, favorite lipstick color.. whatever makes your heart skip a beat in any old notebook really. Same thing. The point is to keep track, which is what it really helps me to do and to stay positive. If I can’t get something done, I just move it to another day or week. Sometimes I have been known to skip a week. If I notice that certain things are consistently getting missed, I reevaluate and maybe try to break it into more manageable chunks.. or I ask for help. Some days I may be struggling to even remember my name or I am just not feeling it and need the written reminders.. and I think it’s worth a try if you have an old spiral bound lying about.

skin soreness – it’s a thing

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.

she works hard for her money

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.

the little ritual of letting go

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.

what the flare

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..