Pain Day

I’m going to preface this one with a note that I’m sick, so I’m extra vulnerable right now.

My pain levels have been horrible the last couple of weeks. I’m stressed and I’m paying for it. Right now my left arm is killing me. I can’t get the pain to let up and I should be sleeping. Youngest starts first day of 8th grade tomorrow morning and I had to ask my mum to take him. I vomited a crap-ton tonight, after feeling sick and nauseous all afternoon. The headache… the pain… the fatigue. Fuck. I’m so worn out on it all. I just want it to stop – give me a break – but it doesn’t.

The meds help but not enough and I sometimes want it all to just be done. Tonight was the worst with the added nausea. Holy fuck, what the hell am I supposed to do for work when this is my world?

I’m not supposed to be awake right now. I need to be resting so I can be up tomorrow to help Youngest. Instead, I turn off the lights and then try to find a way to be comfortable so I can sleep. The pain is the kind I call “strangle pain”. It’s this weird sensation running down the thumb-side of my wrist and it’s a horrible ache that doesn’t go away with rubbing or meds or hot or cold. And then there is the remainder of my arm. The muscles between my elbow and shoulder are soft, sore and nubby. They are bumpy, like maybe there are the tiniest little knots in the muscles. My skin hurts, too. More of those burning patches. I was grateful that the burning patches hadn’t shown up in my nether regions until, finally, I had that show up this weekend. It seems like the more my immune system has to fight, the more the burning patches show up.

Oldest and I colored my hair this last week. I wanted pink hair… something to cheer me up and maybe, cheer her up in the process of doing it. Instead? I just feel dumpy and ugly and tired. I wish it had worked and maybe it did for a little bit, until I kept looking in the mirror and seeing that I just look worn out.

Mum asked me today what she could do to help and there’s just so much I need help with now that I don’t even want to ask. I think it’s worse than that, really, because there’s so much and it’s pervasive and everything and there isn’t really an end to it all. There’s no magic pill that is going to make things better. There’s a lot of work ahead and I’m ok with that, but I don’t know what the outcome will be and will it really help enough to get me back to working?

My sense of hopelessness is overwhelming. I have homework from my SLP at the rehab place. It’s good stuff, but I think it’s all predicated upon the idea that I have a grasp of what has to be done in my world. I don’t. I lose my phone daily now. My dishes aren’t done and I don’t even know what to do about the chaos in our home. I look at it and all I see is noise. It’s not tasks that need to be done. I have a medical bill to pay and it’s small – just $32 and some odd cents. I have $1 in the bank and some money that mum gave me to put gas in the car so Oldest can use it to get to work. I remember the bill when I see it, but then I know that there’s no way to pay the bill, so I set it on my desk and it disappears from my thoughts like smoke.

It’s the same when I turn and look out the window. The dishes don’t exist. The kitty boxes don’t exist. The phone I had in my hand at some earlier point is gone. I can’t retrace my steps to find it because those are gone too.

All there really is for me is the pain in whatever part of my body it’s in at a given moment and whatever I see in front of me. Even then, the pain is derailing everything. And the worry about how I’m going to keep going.

Sometimes I get a brief respite and I try for a bit of hope about digging my way out of this hole. I might think about learning grant-writing or going to graduate school to become a counselor. And then it’s gone in another cycle of pain and foggy thinking and the truth that seeps up where I realize that it all feels unlikely.

I applied for two jobs last week. Both are part-time. One is remote and the other is at a community college location fairly close to where I live. A year ago I had a job I loved but that I was failing in because of my cognitive decline.

Now I’m lucky if I shower and brush my teeth.

My new fun thing to do is to check how low my credit score has dropped because I can’t pay my debts.

A good day is a low pain day. A good day is me getting things done – the paperwork that is endless and the appointments for all the medical things that is equally endless.

I don’t feel sorry for myself, even if it sounds that way here. I don’t have anything to suggest when the people I love ask me what they can do to help. There really isn’t anything that anyone else can do to help, at least not that I can see or understand.

I try to imagine what it will be like down the road. I’ll go to my rehab appointments each week. I’ll go to the consult in October with the weightloss surgeon (because maybe if they put me through it, I’ll drop enough to see a pain reduction or have my blood pressure go down enough to get off some meds).

I say “try” because that’s what it is. I haven’t been successful yet in imagining a change in my world. Even now, I’m sitting in bed, looking at the clothes hanging in my closet and I just see what I was in the past. There’s the dress and cardigan I wore to the office. There is the dress I wore when I went to do job-shadowing at the vet office just around the corner from where I live. There are the things I got when I thought I was holding on at my job and I’d be there through the hot months of summer, but now they just hang there – unused.

One time, back when Spicy Ginger and I were in our first year of renewed dating, he asked me if I was wearing makeup and I said yes and laughed. I’d been wearing makeup around him for a while. I felt beautiful then and I wanted to add those things that made me feel even moreso.

Now I look in the mirror and that lady is gone. All I see are the red, tired eyes. My hair is long and it needs to be cut. I can’t wash it very often because when I do, the weight of it is too much and it hurts, too.

I look at Spicy Ginger and I see this beautiful man that I love so freaking much and I feel sad that he’s with me… this worn out person who is weighed down.

Not every day is this kind of pain day. Some are a bit easier and what I would write then might be lighter. Maybe I’d write more about hope. But today is a pain day, with the added bonus of nausea, vomiting, and a headache that torched my ability to think.

I’m going to cuddle my giant cat. I’m going to try for some sleep before the alarm goes off.

Moonfire

Ebb and Flow

I’m discovering new limitations and this means each time I press my boundaries, I end up paying for it in one way or another. First off, writing is still ok. Well, let’s qualify that: Writing is ok brain-wise. Hands-wise? It’s still relatively painful. I had thought the pain in my hands was related to dehydration, but nope, I was really good yesterday and drank lots of fluids. The pain that hit last night was unreal and has carried into today. Head to toe pain. My hands are aching, both the stiff soreness and this stupid burning sensation on the skin of my palms.

So on Friday my youngest and I started watching Tidying Up with Marie Kondo and it did what I was hoping, which was lit the fire so we got things done. I love her style – so gentle and sweet – like a soothing balm to a worried spirit. She resonated with Youngest, too, so the two of us got a ton of cleaning and organizing done. And then both of us paid for it that night and all day Saturday. I recovered enough on Sunday to get a good bit done in my garage and in my bedroom. Guess what happened? Yep. Pain. Lots of pain.

I have to liken this to the ebb and flow of the tide. It comes in and I get a lot done. It goes out and I pay for my time at “high tide”. I’m not talking about sore muscles, either. Yes, I get those, but I also get burning patches, stiffness, sensitivity so bad that it hurts for even soft materials to touch my skin. And it’s not a one-to-one amount of healing time. My healing/recovery time seems to take anywhere from 2x to 3x the amount of work time to get me back to sort of human. To get back to my normal pain threshold? Yeah, that takes a couple of days.

Let’s talk about my “normal” pain levels, too. Those can range from a 1-2 on the pain scale – really minimal discomfort thanks to my plethora of meds I take each day – to a 6-8, which can be tears, impaired sleep, and there is no position that doesn’t hurt, including being prone. I reserve 9 & 10 for gall stone and kidney stones, but I am REALLY hoping I don’t escalate to a 9/10 with my fibro. I really don’t want to imagine what that will be like. (I’ve also experienced delivering both my kids using Pitocin and I keep that up in the 9/10 range, too, but by far the worst was the kidney stone).

I don’t know where I’m going with this. Maybe it’s just documentation. I am really struggling to explain to my docs exactly how bad my fibro has gotten. It is impacting every single fucking part of my life and I’m so tired. On my good days I feel like I can get through it and I even have hope that things will get better. On my bad days… that’s another thing altogether. I haven’t given up completely on my bad days, but I know that I have to get this managed better. The alternative just isn’t an option. I feel confident that my new physical doc can help me. I’ll do whatever it takes and work however hard she needs me to, if we can just reduce this to a livable level.

Well, the headache is starting and I don’t want to press my luck.

Moonfire

Lost Things – The Brain Is Fragile

My medical care is escalating and holy crap, it’s such a freaking relief. It has taken time to gain momentum, which has left me at various points both frustrated and still hopeful.

I had a doc appointment with someone who kind of scared me (before I met her). She’s a “physical” doctor who works with people with chronic pain. The intake paperwork was comprehensive and I have a tough time with handwriting these days, so it was rough getting through that packet. To put it another way: there was a section with body figures, front/back/both sides, and it asked where the pain is. I looked at that and simply wrote next to the figures, “Head to Toe”.

Now if I were a doc looking at that, I’m sure I’d be a bit frustrated – after all, you want concrete information about what we’re tackling. So I did my best because I understand that. I explained that I have muscle aches, of all varieties – burning, aching, dull, etc, throughout my body. I get flares in my scalp, under my tongue, through my neck, along my arms and legs and horrible pain flares in all my phalanges. These flares can be burning patches and more recently, cold – almost wet-feeling, patches.

My nervous system is ramped up and acting like I’m crisis.

So I did my best to describe all of this, even as my head was aching and my hands were incredibly stiff and painful.

But then I had to add in the complicating factors… the inattentive ADHD, the Raynaud’s in my hands and feet, and the accident in April.

Her medical assistant came in and we got through further clarification about what I’m experiencing and my blood pressure was blessedly in normal range, thanks to the two medications I’m on.

And then I met Dr. Quattrone. Yes, I’m actually naming her because I was scared as hell that she was going to be rough on me to work through the pain and rebuild my body. I’m not stupid. I know that is coming and it’s going to suck, but I also know it’s my best chance to build in some resilience and strength so I can regain a portion of my physical self.

She came in and we started parsing through the material and then we hit the information regarding the accident and that is where things took an unexpected turn. I got all of the information I have been collecting out. And I have to give a big thank you to my mum for sitting with me and helping me writing it down. I described the expressive speech losses, the issue with driving and getting lost in familiar places (and the consequent panicking because I can’t tell where I am or what I’m supposed to do), and my concern that there is more I’ve lost that I don’t know about. I also told her that I don’t have the losses when I’m writing (typing, really – as I have severe spelling issues when I’m hand-writing).

I’m also having some dizzy spells, but I can’t tell if those are due to my brain injury or due to the horrendous heat and resulting dehydration.

I did tell her that stress – whether mental or physical (like the heat or overdoing it) – increase the symptoms.

She is decisive and direct and so freaking clear in communication, it was like getting cold water after being parched for months. I figured it was relevant to explain “before and after”, so I told her that I have two degrees and have always been high functioning, so what I am experiencing is a huge change. And I told her about the illness both Youngest and I had at the end of Feb 2020/beginning of March 2020, which truly appears to be COVID-19, although we didn’t get diagnosed because they weren’t testing people like us back then.

I told her about my cognitive and memory losses beginning after that and the crisis that developed last summer and has pretty much continued.

She listened. And she acted.

I’m being referred to a post-concussion clinic ASAP. No futzing around and if I don’t hear from them quickly, I’m to call them and get it going.

And after we deal with my brain? We’re going to fix my body. I asked her: Can you help me get my body back? And she answered firmly: Yes.

Now I’m sitting here, teary and hopeful for the first time in almost 2 years. I want to be clear that this wasn’t a failure on the part of my other medical care folks up to now. Each of them has provided incredible care in getting me through this and they all helped get me to Dr. Quattrone. I know this is going to be hard work, but oh my hell, I’m so ready.

I stood out in the gray, stormy morning, listening to the distant thunder and smelling the drizzly rain. I held out my arms and for the first time in a long while, I wanted to go put on my running shoes and go for a run. Now I smile, because that would be a BAD idea at this point in my recovery. So instead I just walked around in the cool, damp air and talked to the ducks and chickens about what a lovely morning it is.

I know now that I did sustain a brain injury with my infamous interaction with that recycling bin and it makes sense. I was knocked on my ass and I have the 17 stitches to prove it.

Life is not what I thought it was going to be at this point, but I’m going to be ok. I know that now. I know there will be changes in how I get through it, but I no longer think I’m going to end up on disability. I have literally TEAMS of people who can help me get through this. And I can still write – BLESSED BE!!

I don’t want to get back into bed. I have shit to do now. I want to shower (holy shit!) and get going. I want to clean up my space and work on the damned dresser I need so I can put away my clean clothing. I feel hope and let me tell you, that is worth millions!

Moonfire