I’m...so...FRUSTRATED!

In home therapy ended last week, it’ll be about a week before outpatient therapy can start so I went to the gym! I can be found on my bed for the next eleventy hundred hours.

I truly didn’t do anything that would be considered overdoing it. I only did 5 minutes on the bike, then went through the home routine she left me, plus a few arm workouts with lowest weight dumbbell.

Driving back home was incredibly difficult and it’s less than a mile drive. This was my concern being discharged from in home therapy. When doing inpatient and in home therapies, if we pushed it was ok, I could get right into bed. (as opposed to in/out/in/out of the car, driving, walking from car, etc.

I’ve been in bed since getting home 2 hours ago. Pain med taken, maybe took the edge off but barely. I’m frustrated that such a small workout took me down like this. I’m frustrated with how very many times I’ve had to “start over”. I’m just frustrated! Yes I know  it’ll get better, I know I’ll continue to build strength and endurance but right now, in this moment, I’m angry and yes, frustrated.

This is my reality, and the reality for my family who sees this up close and personal day after day. All my smiles and insistence that “I’m fine” fall on deaf ears as far as they’re concerned because they SEE the things I think I’m hiding.

I won’t give up, no worries. Sometimes I just want to SCREAM in rage at this stupid disease and the never ending cycle of flare, recover, repeat. I want things to change but all the wanting and working hard just doesn’t matter when dealing with a chronic illness like Myositis. I know that continuing to want more for myself will at least always help mentally I’m just tired today of the physical failings of my body.

That D*mn Pay Stub

In one of my kitchen drawers sits the voided pay stub that was my very first paycheck when I went back to work after 20+ years of being a stay at home mom. I used to have it in my wallet so I would see it often; it was a huge source of pride and represented an incredible new path I was forging for myself and my kids. Just before diagnosis I had taken the kids and me on a vacation and I was starting to shop for a new vehicle. That pay stub represented independence and new found confidence. It represented the realization that others believed in me, too (my brother for one, who took a leap of faith in asking me to work for him).

The paycheck now sits in one of my kitchen drawers. I took it out of my wallet a couple years ago and almost threw it away but couldn’t, so I put it in the very back of my silverware drawer, thinking that would lessen the sting of seeing it and being reminded of all I’ve lost, but each time I find myself looking for the actual “lost” kitchen serving spoon/ice cream scoop/other random kitchen gadgets my hand finds a piece of paper that reminds me again of the thief named Dermatomyositis and Antisynthetase Syndrome that came into my life in 2016.

I could just throw it away. I could put it into a bin or the back of a bottom drawer full of items I know I don’t need and don’t use. I could burn it! I could shred it. I could tear it up into lots of little pieces--okay, no my hands wouldn’t cooperate enough with me to do that one but still it’s an idea of what I *could* do with that damn paystub.

The truth is, I don’t want to get rid of it. This isn’t me clinging to negativity though I could understand some seeing it that way, and at times yes, the reminder of what was lost is definitely negative and there is no way around that, there’s no spinning it. I’ve worked so hard over the past 3 years since diagnosis to always find the positive somehow/someway, and I’ll keep doing that! At the same time I’m slowly, albeit very very slowly, learning that it is okay to accept the negative realities of having a serious, debilitating, chronic illness. It is my reality now and entwined into every fiber (quite literally! lol see I still have my sense of humor) of my being. I’m working on seeing that piece of paper now not only as what I’ve lost but also as a reminder that I can still have those feelings of confidence and strength, I just have to find new ways to reinforce that about myself in spite of my disabilities.

To Accept or Not to Accept...

I was going to start this by saying “Last night I had a burst of energy as I was doing my basic night kitchen work, ie loading the dishwasher and washing the non-dishwasher dishes and shining the sink,” but as is seemingly always the case when I try to describe attributes/sensations of these diseases of mine, energy isn’t the quite right word. So:

Take Two!

Last night as I finished doing the dishwasher, I set my hand on the counter to steady myself from yet another imbalance of the jelly legs and, when it felt like I lost a layer of skin peeling my hand from the invisible sticky mess that was there left by “”I didn’t do it” or “it wasn’t me,” I had the desire to really clean the counters and stove top. Every now and then I can convert the desire into accomplishing something more physical. Whether it was some slight improvement or the Starbucks 2x caffeine coffee I had earlier or a combination I got it done and it felt good.

I went to put clean towels into the NO MOM LAND, aka the boys’ bathroom (go ahead laugh, true but funny but I have to say lately they really are doing better in there, good boys haha) and saw that apparently a car mechanic had washed hands or something in the sink. And counter. And backsplash. And all the way to the top of the toilet tank. . Oh—and no car mechanic was in the house so I don’t know what it was and don’t want to...but I digress. With the mind over matter action still happening I cleaned up in there as well.

That’s it. That’s all the real extra I did! Wait not true, I did go to the store to pick up a prescription and a couple items and didn’t use a Beep-Beep (my fancy word for the motorized scooters), I walked because I felt ok enough to just walk!

Those were my extras for yesterday. I woke up around 4am to spasms in my left hip flexor shooting through the leg, making my leg stiff and in agony; I didn’t want to take anything and didn’t want to really move so I turned up the temp on my heated blanket, did some deep breathing and fell back asleep.

My alarm went off at 5:45, left hip and leg still hurting but what-are-ya-gonna-do, time to get up. I opened my eyes, turned my head and was met with that achy head pain that has become an immediate red flag that a flare may be coming. I went to turn off my alarm and my arm felt like the mysterious mechanic who infiltrated the bathroom must have tied bricks to it, and the other arm. Red flag alert two. I got out of bed, started to walk and upon finding that jelly legs had also been weighted down, I angrily recognized red flag alert three.

I couldn’t find the humor after that. I’m just going to say it, and I don’t like to say it “out loud” but I’m going to anyway:

IT’S NOT FAIR!

I quietly mumbled an angry storm of cursing while still in my room, took some breaths and hobbled my way to the kitchen and coffee, thankful I cleaned the sticky mess on the counter last as my legs started to give out I almost the same spot as last night, but worse and I threw my both hands onto said counter and stove top to keep from falling.

I’m not sad, I’m just so angry! I like angry better than sad so there’s a positive I suppose. I feel that anger is more of a concrete emotion that I can “put a finger on,” feel it, find a healthy way to express it and get it out!

I don’t think I’m headed into a full on flare, no nausea and the head pain has subsided a bit. I’ll take it easy today, I’ll take the advice I’d compassionately give anyone else to rest and recoup but I won’t take it eagerly.

I don’t know how to accept the terms and conditions of the diseases I have; I don't want to accept them! I do realize however that I have to at least acknowledge the limits and allow for recovery, like it or not, and for this morning writing about it was what I felt needed to be done. And yeah yeah, I’ll mostly be sitting yarn-arting or sleeping today, self care and all that rubbish, no worries, no lectures needed, I promise.

I Hate Roller Coasters

When your mommy brings you Reese's Stuffed with Pieces, the day gets a little brighter. At the same time, I hate that my parents have to come visit/help me. Okay, I don’t hate them coming here, I hate the idea and the why of it. They shouldn’t have to be worrying about me at this point in their lives, at least not in this way!

This stupid health roller coaster I and so many of us are on is just the stupidest of stupid rides, one that I not only can't get off but am stuck in that damn front seat! It keeps revealing new twists and loops hidden on initial observation of the roller coaster, and each new path on the track brings increased and almost suffocating speeds; finally, finally the ride starts slowing down, even coming to a stop--only to launch backwards. Those closest to us are forced on, locked in and zoomed onto the rickety tracks. Some stay, white knuckled and terrified into silence. Some scream in terror with eyes squeezed closed so as not to see what’s coming next or how anyone else is being affected. Some sit next to me holding my hand, while others sit next to me laughing hysterically to the point of near peeing pants at and with me in the face of the fact that at any moment the entire ride might crash down! Others use the eject button;  it’s an escape equipped with a silencer so you never hear them leave.

Yes I got all this from a pack of Reese’s with Pieces lol.

The Worst of Both Worlds--Myositis

Dermatomyositis (DM) is classified both as a neuromuscular disease and an autoimmune disease. It is thought that the inflammation resulting in cell damage is created when the immune system attacks healthy muscle tissue and blood vessels under the skin. -- From Myositis Support and Understanding

Basically, DM is so rare researchers are still learning about this disease (as well as all the myositis'), and they go back and forth as to whether it is an autoimmune and/or neuromuscular disease (hence my "worst of both worlds), which is why myositis is considered to also be under the Muscular Dystrophy "umbrella". The only way to keep research continuing is to help raise awareness, and it is as easy as sharing as much as you can about these diseases! Raising awareness is saving lives. It was not too long ago (literally within the last 10 years) that the prognosis for DM was about 5 years. Now people are living many, many years thanks to the increase in awareness which has resulted in an increase in research. Please help keep that going!