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.