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

on the revisit

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.

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..

coming to terms

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.