Communication is Key

It's common for me to forget that I'm disabled. I'm always in pain, but that has just become a part of my day-to-day life. The intensity of it will vary, but not the pain itself. So I actually forget that most people don't have ANY pain unless they hurt themselves.

However, I pretend to be "normal" all of the time. A term the neurodivergent community has coined as "masking." I am a huge masker. This is why communication is so key.

Beautiful coffee from my mama.

Mindfulness activities like a body scan through my day are massively helpful. I tend to dissociate from my body. Anyone would living with constant pain. But that's not actually useful or helpful. I also have a severely delayed pain response. Typically I can do a hard activity like intense gardening and then not feel it or notice till about 12 hours later. This makes it a big challenge to know my limit.

Mental energy is different for me. I can feel my brain battery actively going down. Draining minute by minute. So mental tasks can become difficult for me quickly. 

Since all of these things are hard for me to realize, I know that people around me, even those who are mad about me, won't know how I'm feeling unless I tell them.

I am still disabled. My dis-ease impacts my daily life and ability to function in a pretty major way. I have to monitor and pace myself in ways no healthy person does. I also struggle with constant pain in levels that would send your average white man into screaming fits on the floor. 

The receptionist at my pain clinic asked me over the phone yesterday what my pain was at between 1-10. It was a good day so I answered honestly about a 6. Reminder, that was a GOOD DAY. I'd say I average about a 7. I message my doctor and make an appointment if it's a 10. I've never been to the ER for pain.

I tend to share with my mother much more than my husband. He's an abilist who tends to be a bit dismissive. I think that's a reflex most people have. To instantly compare their experience with what they're hearing. I'm guilty of it too. It builds relatability. And frankly, he's not the best listener at times.

So it becomes very important for me to clearly communicate what's going on in my body frequently. Not ad nauseum, but frequently enough to get the point across. I'M DISABLED! I can't/shouldn't do that. I need help. I'm exhausted. I've hit my limit. I need a nap. My pain is really bad right now. Etc...

Not how my nails looked a month ago.

I've started having problems with my fingernails. One of them is lifting off the nail bed. All of them have become thin and brittle, splitting painfully and breaking even though I keep them short. Copilot told me that it is likely from my Mitochondrial Myopathy and could also be an Iron deficiency. I showed my husband and talked about it with him. Something I likely wouldn't have done in the past.

I also have a hemorrhoid right now due to my chronic constipation (a side effect from my pain medication.) Sorry for the TMI, but it's health related. I've never had one before, despite my fears. I was shocked I didn't have one much sooner to be honest. When I do finally go I'm like an adult rabbit. Hahahah.

And let's not even get into the massive stye I just struggled with. 

Point is there's always something going on with my body. Sometimes you can see it. Often you cannot. That's why communication from me is key if I'm to have the real kind of relationships that make life so fantastic.

A thoughtful gift from a good friend makes my day.

Let's talk about pain

Something I don't talk about is my pain. Not in my journals, here or in person. The last time I talked about pain specifically here was four years ago.

I do talk about it... LOUDLY with my medical team. However, even with them there's this sense of "Yes. You have pain. And? What do you think we can do about that?" Or at least that's what it feels like to me.

A lot of the time it feels futile to even broach the topic of pain. I know I have pain. Tons of it. But it's so subjective and hard to describe that I rarely do. How do I begin to talk about pain? There's the 1-10 scale.

This is the old-school traditional one that's useless.

My pain is usually a 6 all of the time.

Although this pain scale is better, it's still not perfect.

The last time I saw my muscular team I let them know ahead of time that pain was the number one thing I wanted to talk about. Even then I had to bring it back up at the end of my appointment. A quick medication review and she stated "It looks like you're already maxed out on meds. Have you tried acupuncture?" That's every doctor's answer to everything. Physical therapy and acupuncture. 

y'all make me tired!

Instead I asked for a referral to the "pain clinic" I'd heard about vaguely in the past. Like a hushed secret from someone. I had no idea what it meant, but it had the word "pain" in it so I figured it was at least worth a try.

Now here comes my least favorite part of all medicine.

Once at the mythical "pain clinic" I was asked "Where is your worst pain." "Well... my whole body! Let's start there!" On the meticulously filled out paperwork I clearly stated that I have 

• Burning pain
• Pins and needles
• Aches
• Soreness
• Pulling
• Throbbing
• Stabbing

All of these are from different parts of the body and I'm guessing have some different causes such as neuropathy, arthritis or my muscle disease. But I chose my back as the worst. She poked and prodded and yes... "elicited a pain response." That's medical jargon for "hurt me." Then came up with a plan to treat that specific pain.

Insert eye roll here.

I am not a single issue or body part. I am a whole body. A person. So why the medical field insists on treating individual body parts I will never know. It feels incredibly frustrating and antiquated.

I agreed to try a procedure called "dry needling" on my back. I'm hoping it helps with the chronic pain I have there. I guess the rest of my pain will have to watch on in horror. "Let this be a lesson to the rest of you!"

My second "pain clinic" appointment was with a social worker. It was interesting. He recommended some books to me and a support group. Unfortunately the group meets smack in the middle of my rest time. I told him if they start a morning group I'd be interested.

He also wants to meet with me over the computer to go through some CBT techniques for pain. I'm guessing I already know them all, but I will try to keep an open mind. 

I bought the book he recommended:
You Are Not Your Pain

The pain community is big into mindfulness.

I appreciated the reminder that it can be a tool. One that I stopped using a long time ago but am open to giving it another try.

So although I felt heard, it was also frustrating. Other than taking opiates, which I have zero interest in ever doing unless I'm actually dying. It feels like there's few options.

What helps my pain is:

• Distraction (eating, petting my dog...)
• Heat
• Gentle movement (stretching)
• Rest
• Massage (from my husband)
• Salonpas, Ibuprophen
• My Lyrica, Cymbalta, Amantadine & Baclofen

I'm also trying to talk about pain more and let my husband know when I'm in pain. I thought maybe like anxiety and depression, pain likes silence. So I'm working on that.