Life is Certainly Real and Those that See It

Yesterday I climbed a big hill. I wasn’t totally in the mood, but I signed up for the GBS/CIDP foundation raise well challenge. It’s 30 days of August of health and wellness challenges to raise money to research and maybe find a cure for Guillaine-Barre Syndrome, which is acute and the chronic form that I have, chronic inflammatory demylenating polyneuropathy. I didn’t sign up for the challenge just for me, but a friend I’ve known for 25 years came down with GBS a few months ago and is having a rough time healing. It is potentially devastating with people in my support groups asking on behalf of a family member if IVIG got anyone off a ventilator or did it allow them to get their trach removed? A trach is a pipe implanted directly into the windpipe so people can breathe who can’t on their own.

I have a couple people in my life who really see me even though I don’t ever technically see them as they live on the other side of the country. I had to give myself a monthly auto injector today. I’m the queen of managing the pain of needles. I was lucky to message a friend how I was freaking out about the auto injector as it hurts, and I’ve become really sensitive to needles. She got me through it.

Maybe it was my failed IVIG infusion got to me when vein number 6 blew, and I finally cried. Maybe it’s the weekly B12 injections, the monthly auto injector for migraines, the 6 needles a week for my self Ig infusion that I was looking forward to skipping this week as I was supposed to do IVIG all last week. Now I’m doing it as soon as the specialty pharmacy overnights it tomorrow for Tuesday morning. I couldn’t finish my IVIG. My veins aren’t having it.

As I sat and messaged my friend about it just getting to be too many needles and how I’m overwhelmed, she validated every bit of it. It IS overwhelming and nice to have a friend who sees that for every hill I climb or time I stand on my hands, she knows I’m managing the impossible medically with integrity, sanity, and incredible strength.

Another friend messaged as he’s managing the 1 year anniversary of who he calls his “soul mates” suicide. I offered to listen to him as he’s hurting. The first bit of conversation was him saying “I know you have been powering through. And you got a job? I’m so impressed as I know what you go through. How are you?” I told him I was honestly just glad he thought of me and wanted to focus on his pain.

So as about 5 pm hit, I had done everything to manage my arthritis in my neck. I stretched. I took an Epsom salt bath. I breathed through the pain. I don’t want to take medication. I rarely take pain medication and never during the day. I told my friend I had to go to bed. The pain was so intense I had to meditate and put my head on heat to try to escape it for awhile. She was lovingly concerned.

Believe it or not, nearly 3 hours later, and I’m feeling better. This is what feeling better looks like sometimes. I’ll take it.

I don’t need sympathy or pity. I just appreciate how people who don’t see me can see me so well.

I’m glad I scale hills and stand on my head. I also know for every hill I climb, I hurt. The pain never stops, but I don’t let it stop me. I have to take breaks. I have to rest. I have to poke myself with lots of needles, but wow is it amazing to have people see the unhealthy part of a me that is very healthy for my situation.

I have dubbed myself a “pathological giver”, meaning I gave to others to the detriment of myself. I won’t say I’m in a taking mode right now, it’s more of a receiving mode. I’m still giving and kind, I’m just being more skimpy about it as I allow others to genuinely support me.

I’m figuring out a new world that includes the world of rapidly upcoming employment in what I can only call an absolute dream job and as I navigate the complexities of how that fits in my world, I’m just going to lay here and receive. Well, I’ll give a little too, especially to myself.



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