I talked a while ago about my Mamaw and how I’m pretty sure she had Sjogren’s Syndrome…and I also talked about her very special way of saying “I told them…” often when people didn’t take her advice or listen to her. It’s pretty iconic of her and I can still hear the way she says it in my head.
Well, I’ve earned my first “I told them…” since I wrote that post. So here goes…
I told them it was autoimmune related fatigue and not disrupted sleep!
I wrote a while back about my doctor ordering a sleep study as he felt that my fatigue level had to be due to something else. So I went for the study a few weeks ago, spent an uncomfortable night with electrodes taped all over my legs, head, face and neck, a tube in my nose to measure my breathing, straps around my chest to measure the rise and fall of my chest, and a pulse monitor clamped onto my first finger, in a foreign room on a bed that’s not mine. How anyone can possibly sleep normally like that I’ll never know. I had to hide my left hand under blankets or pillows to keep the red glow of the pulse monitor from making me feel like I was E.T. Every time I’d lay on my side (how I normally sleep) the electrode behind ear pressed into my head and hurt like heck.
The next morning they give you a survey to ask how you felt you slept compared to your typical sleep. I actually laughed out loud when I saw “I slept better than normal” was actually an option on the form. If anyone slept better than normal under these conditions then they have a truly horrible “normal” sleeping situation!
Yesterday I got a call from the sleep study nurse giving me my results. She said to have even “mild” sleep disturbance you need to average 5 apnea episodes per hour. My average was zero. Yep, zip, nada, none. I slept just fine…even under those crummy conditions. She said they didn’t have an explanation from the sleep study for why I was so tired all the time and that she’d be happy to make me an appt with one of their sleep specialists if I’d like. I explained that I don’t really feel it’s a sleep problem – that I feel it’s fatigue from my autoimmune disease. She actually gave a little chuckle and said “oh, well, yes, if you’re body is fighting against itself that would certainly make you fatigued.” Hallelujah! Someone “got it”!
I actually said to her “I told my doctor that I slept just fine!” And she said “well, you were certainly right!” So proud to have channeled Mamaw in that moment!
So – a little happiness at being proven correct…but where does that get me? Still fatigued, still not on a treatment plan that’s helping…in fact, still on the same treatment I’ve been on for a year that hasn’t helped in that year.
One thought on “Officially earned my first “I TOLD them…””
That Nurse sounds like she really knows what is going on. No one ever understands that fatigue. All you get is “Oh I’m so tired too. It’s nice to have reminders of your mom.
My GP doctor told me to exercise to fight the fatigue