I’m still me. I’m still in here. But there’s this strange and ridiculous chunk of my life that is this other thing.
What would my “normal” friend say if I told her I’d been wearing pajamas for 5 days? What if she saw my freezer drawer with 15+ ice packs? What if she saw my medication drawer?
She might run screaming. And understandably so… my Chronic life is so far from what my Normal life was. I wouldn’t have understood it back when I was a Normal. And I’m a nurse; I should have understood! But nowhere in school or clinicals did they discuss chronic pain.
Which is why my Chronic friends are so critical. Some of our correspondence through Facebook messenger, Instagram direct messages, and texts are freaking hilarious. Hilarious in a dark, wacky, weird way. My Chronic friends are people I can vent and connect.
When we ask each other how we are… we don’t smile and lie and answer “Fine.” We lay it out honestly: “I’m still in bed and it’s 1pm! My head is a bastard and I’ve got a heater on my sacroiliac nonsense. How are you?” Sometimes we talk in Pain Scale: “My head is only a 4 but my RA is a 7 and I can’t keep my eyes open.”
We all have matching night tables with a pharmacy drawer chockful of medication bottles, “Big Bertha” pill organizers, an unusually large amount of icing and heating instruments, drug-free treatment mechanisms, massage gadgets, and other tools that poke, prod, stab, flatten, relax, bruise, knead, manipulate different areas of our body.
Our houses are not like other homes… we have a “nest” or a “perch” where we crawl to when the hurting is too much. It’s our Spot. Mine is my bed… in my bedroom where I haven’t opened the blinds in over 5 years. It’s where my kids and my husband look for me first when they come home. My Spot is surrounded by everything I need: many pillows and blakets, heating pads, my nightstand with it’s medication drawer and the second drawer full of topicals – Biofreeze, Voltaren, Arnica, IcyHot, essential oils, numbing sticks and more. And always a lip balm. Because lip balm is an amazing thing that is both critical for dry lips and can make us feel a little more alive!
Chronics need distraction. While we are in the nest, we can watch tv sometimes. It can be a helpful distraction from pain… during attacks computer screens and books are difficult, but Netflix… we can sometimes handle that! And we’re Netflix experts and we can talk show shop. “Did you watch that series?” “It was pretty good.” “Oh I liked that one a lot!”
We keep our phones nearby… it’s great to connect through Facebook support groups or text each other. We understand when it takes awhile for another Chronic to respond as they may be busy with very difficult task of SHOWERING. Or they may be too sick to open their phones. If they can respond, sometimes their responses might not make sense if they’re in a bad way. It’s hard to spell and autocorrect is a jerk when you’re hurting. Aphasia and brain fog certainly don’t help writing and communicating coherently.
Chronics don’t call or Facetime each other. We wouldn’t dare. That’s just altogether too intrusive. The other Chronic may have 3 day bedhead, drool marks on their face, ice or cups attached to their head. It’s a definite possibility. And that would be awkward.
Our calendars look the same: often littered with many doc appointments, therapy, treatment, and lab appointments, and the like. We may have a busy day with obligations of “Normal living”… those days usually have rest prep days and rest recovery days worked in – if we know what’s good for us.
Many of us have “furry caregivers”… our dogs and cats are Chronic comforts. They are so important and I know as much about my Chronic friends’ animals as I do about their children. We might try to hide some of our illness from our families, but our pets see it ALL.
We know how to celebrate the big things: “I did a load of laundry today!” “I cleaned the cat box!” “I made dinner!” And we applaud each other with celebrating emoticons and hearts. ❤😍💪😃👏🎊
We have found each other, we understand each other, we don’t have to pretend. And there’s an empathy and recognition that only other Chronics get… we care deeply for each other… we share pain and burdens and blessings. And we are always there to support and encourage.
Actual Chronic A, B, C conversation:
A: “I’d go but I’m in the worst shape: migraine everyday.”
B: “g*d da** it! It’s no f***ing fair!”
C: “I’m so sorry, I can’t believe how sh*t it’s been.”
A: “I feel like THE biggest loser.”
B: “I was saying exactly the same thing today.”
C: “No one gets it but you guys.”
B: “Me. Complaining everyday about something insane. Yesterday I couldn’t believe how bad my back was. Then today my arm! Yesterday my head was insane!”
A: “Seriously this all embarrasses me. I’m like only out of bed to go to the bathroom. My SI is giving me searing pain from my a** to the instep of my foot. What the actual f*ck???”
C: “And the weather! It’s been rain and more rain. There’s no way I can function with the s*it!”
A: “I took my son to the doctor today and found out they have an online scheduling portal, so I’ll never have to operate a telephone to schedule him in!”
#ChronicMigraine #MigraineAwareness #SpeakYourMigraine #ChronicIllness #Automimmune #invisibleillness