Goodness. It’s been a couple of weeks since I’ve written. The title of this blog post sums up the month of August fairly well. I’m breaking this down into 3 parts simply because I need to get my kids up and dressed for church. #reallife
Fatigue has been a real bear this past month. A culmination of everything “make sure the kids have a fabulous summer” and then tack on a bacterial illness and two weeks of high dose antibiotics. Ugh. My body was DONE.
I NEVER put the blame for anything with my body on MS, but had to concede on this one. I couldn’t function or fight thru the fog to think straight. I had to change my thought process from blaming MS and those flipping lesions to accepting that this is a reason.
When I associate an image with the word Blame, it looks like a kid having a tantrum. I won’t allow this situation to lower me to that. Honestly, in the depths of the fatigue I didn’t have the energy for a tantrum. My kids, husband and work all still require attention. This body still has responsibilities.
After a solid heart to heart with my sister and a day at a women’s faith conference, I admitted that the elephant in the room is this autoimmune disease. Even though I refuse to use it as an excuse, an excuse is very different than a reason. Many factors led to my body being worn out. Multiple sclerosis is the reason for this level of fatigue.
I’m happy to say that a week later, I’m starting to feel like myself again. I’ve hit the stationary bike twice, elliptical once, and ran my outdoor route twice. All modes of transportation are much slower than when I’m at my top. Exercise sharpens my mind and improves my mood.
A couple of weeks ago, I completed my second indoor sprint triathlon.
300m lap swim- this is actually only 6 down and backs in our local Wellness Center’s pool. 78 laps done in the previous weeks before I completely fried my hair with the chlorine and purchased a swim cap. Pink swim goggles and my navy one-piece- I felt pretty official! I managed to cut 1.5 minutes off my previous race time in swimming.
2mile run- Running is my jam. I like to get into a rhythm and just go for miles. However… sprinting is NOT my jam. Nerve pain and numbness in my leg plagued me most of the winter. My mileage was dialed way back. I didn’t expect the time to be good. Vomit was close to erupting, but I beat my previous two mile triathlon sprint by about 20seconds.
12mile bike- After the fall sprint tri, the organizer decided to add 4 miles to the challenge. My spinning seat wasn’t set correctly… my fault. Shredded legs and a little rub discomfort. About 2:10/mile.
Overall, I took 3rd female. I thought I would feel proud of my physical accomplishment.
Upon reflection, all I felt was humbled. Two days before this, I laid in the tube for two and a half hours. My annual MRI: brain and thoracic spine, with and without contrast- a yearly peek into my neurological system.
All stable. Nothing new. I’d have loved to hear that my lesions miraculously healed themselves. Same white dots in the same spots.
Randomly, I’ll have weird nerve and muscle symptoms. For years, I thought everybody did. Apparently not. MS does odd things.
Have you ever considered how fortunate you are to have working legs, fingers that feel, and a spine that doesn’t “buzz?” This isn’t for sympathy. These truly were not situations that I’d considered prior to about four years ago.
Humbled to be able to swim. Amazed at running. Grateful for biking.
I haven’t updated much lately about my runs. There’s a good reason for that… I haven’t been running.
I came down with a nasty, nasty, nasty virus the day I finished my 40 mile December. That’s right, just one nasty wasn’t enough emphasis. After fighting it at home for a few days, it landed me in the hospital on fluids and zofran for 2 days. Bless the person who invented IV fluids. I received about 6 bags before they unhooked me and sent me home.
That virus knocked me back hard. It fired up my immune system, therefore making my nervous system angry too. I tingled on my arms, legs, and back for two weeks. I was fatigued. I was drinking broth and struggling with solids. And now, I’m finally back at it. I’m working on gaining back some of the weight I lost. I couldn’t keep my running pants up at the sick weight. Not cool.
I went for my first run in almost three weeks yesterday. I parked the car by the grade school so I could cover my day of carpool and ran from there. I ran up the street to the track and knocked out a mile. Then I turned around and hustled back to get my crew of 1st graders. I seriously felt like this:
Did I pull that move out once or twice as I chugged it down the street? Maybe. I’ve been caught dancing on a treadmill. It happens.
Running that 1.6mi route sparked my mind to start thinking again of spring running goals. Do I try to train for another half or do I stick to 10K’s and work for a half this fall? I’m just not sure.
My running thoughts on running…
1) Start easy with pace and distance. 2) Visit with Neurologist about touchy immune and nervous system. 3) Set Spring running goals. 4) Refresh music playlist. 5) Go do it.
Insomnia. Apparently, it is quite common. Defined as “habitual sleeplessness or inability to sleep,” this is a frustrating part of life for millions of people. Some struggle with getting to sleep. Others struggle to stay asleep. According to medicalnewstoday, there are many causes ranging from psychological and medical issues to technological media being present in the bedroom. The diagnosis of insomnia covers a wide range of people and blankets a myriad of diagnoses.
In the Trenches
When my doctor first asked me about my sleep, I was eyeballs-deep in parenting a non-sleeping 1 year old and rambunctious 3 year old. I kid you not, my 1yr old slept only eight nights the first 14-15 months. She was a tiny, healthy little thing that simply did not sleep. “This too shall pass” was a frequent phrase for me. I was also working full-time. A glowing picture of sleep, I was not.
So what do you say when your doctor looks at you and says “How are you sleeping?” My reply was simply that I wasn’t but isn’t that what most parents in the trenches say? Was my situation really any different?
Insomnia and the Brain
The nervous system is an amazing superhighway transferring messages (stimuli) along the neural pathways. Central command is the complex powerhouse known as your brain. Have you seen the Pixar movie ‘Inside Out’? That’s a fun illustration, but it does so much more than just control feelings. The brain delicately sends out messages for voluntary and involuntary muscle movements. When you have a lesion – it screws everything up.
If I could find my latest disc with my annual MRI pics, I’d post one. It’s fascinating. Every year when I have my MRI, our hospital sends me home with a copy with the current scan and a copy of the previous year’s to take to my neuro. I go home and pour over these images trying to note any changes. Thus far, I haven’t had any since the first one showing the initial lesion(s).
Autoimmune fatigue is a different kind of animal… and it likes to snowball. For example – I like to run. I can run a half-marathon and be tired at the end. I might even “hit the wall” in proverbial running terms. It still isn’t the same kind of fatigue as autoimmune fatigue. When the real thing hits, you really don’t have a choice about “should I stay and work 15 more minutes on that project?” or “I wonder what we’ll have for dinner tonight?” It is a cancel or postpone whatever you can, tone it down, rest, keep your eyes open and body awake enough to safely get everyone home type of reaction. It is bad — and I didn’t really understand that until I experienced it.
The kicker is…. just because you rest doesn’t mean you sleep. When you don’t actually sleep, your body doesn’t get the deep REM cycle it needs to heal. Thus begins the snowball effect. It doesn’t always start with autoimmune fatigue, but you can bet that after a few days or weeks of not getting that deeply needed sleep you are seriously tip-toeing along the edge of the autoimmune cliff.
I fall into that category of insomniacs that don’t have a problem falling asleep, but can’t seem to stay that way. Who am I kidding??? When I tuck my littles into bed, I’m probably drooling and unconscious before they are…
Back to an appointment with my neuro… He suggested a few options:
No media 30 minutes before bed
Amitriptyline (wide range of uses!!!)
On top of those options, I’ve found that regular exercise and making sure my magnesium levels are sufficient are the keys to a full night’s sleep. Not every single night, but the majority are better with the assistance of these supplements. I can’t handle even the lowest dose of amitriptyline, so I take a half dose if its been multiple days seeing 2 or 3am. At a half dose, I still have weights on my eyelids at 9am and my amazing husband handles the school prep and drop-off.
When I do see 2 or 3am, I try to make the best of it. In the quiet of the wee hours, creativity flows and deep heart-wrenching prayers are said. If only there was a good way to record that creativity in the dark and warmth of my bed? I feel comfort in those deep prayers and sometimes an indescribable spiritual peace.
If you suffer from insomnia, I strongly encourage you to talk with your doctor and open your mind to possibly look at “outside the box” remedies (exercise, lavender, lifestyle changes, quiet meditation/prayer time).
As with all things, a positive outlook is something I strive for. Psalm 34. It’s worth the look.