Auto Immune fatigue
I’m surprised, but I was fooled, so this is a cautionary tale. Don’t be fooled by your fatigue, It may not be an MS relapse.
This isn’t but denial or false hope, I want to explain how I was fooled into thinking it was an MS relapse.
If you have fatigue, associated with an auto immune fatigue, you know how debilitating it is. How at times, walking seems like the hardest thing. The your cognition is affected so much that you have to concentrate hard on the littlest of tasks.
The MS Box
I have been put in the MS box by my GP, hospital, MS nurse and other people with MS at times. You may have experienced the same. maybe with MS, or fibromyalgia or Chronic Fatigue Syndrome. The, “others nothing we can do box”.
Have you been put in your diagnosis box? Beware, it can even fool you.
I have fought and fought against my label, not willing to accept that every single thing I experience is down to MS. It’s tricky of course because MS is so encompassing of so many symptoms. At the moment I’m in 2 boxes, MS and the peri-menopause and it appears that the combination of the 2 covers everything!!
Getting my MS to Sleep
I have as you may or not know, I managed to get my MS to sleep, I did this Through mindset, lifestyle and diet.
I don’t know if it has gone, only an MRI would confirm this, but it slumbers on with no effect on me on a day to day basis if I keep it sleepy and comfortable, now classed as Benign.
How? well, it wasn’t easy but after a whole heap of overwhelm and trying absolutely everything, I settled into giving my body what it needed, based on its original design, and that is Safety and Sustenance.
I eat a mostly anti inflammatory diet and keep inflammatory food to a minimum. I take supplements, I exercise moderately and I have reduced stress, well when I say reduced. I have taken steps to reduce or at least recognise my triggers, or tigers if you like. I can triggered less and am a more mindful person I guess.
I can recognise that most of my worries are infact thoughts, thoughts that I control.
Did I wake the tiger?
So, since February 2019, I’ve fell like crap, so tired. We return from a trip to the US and initially I thought the key lag was taking a while to go. But, it didn’t. But the fatigue didn’t feel like the MS fatigue of old, this was different. But still day to day living has been hard. Really hard.
I thought I had woken the tiger, I had some pins and needles too. So I dug deep and tried to get back on track. I wasn’t exercising as I was so exhausted, I wondered if the heat were having an effect as it can with MS. Constantly searching for reasons and it too me back to when I was diagnosed. Searching for explanations, causes and cures.
Eventually, after having a very sore mouth for months, which I thought was down to my night time retainers (you have a glam image in your head now right?), the orthodontist looked at my tongue and suggested I may be anaemic.
So, I requested a blood test to rule it out and I am severely low on iron, not a little low, severely low!
I put myself in the box!
I spent so long trying to find other reasons for symptoms in the past, but this time, I missed this completely. I thought things were worsening and they weren’t. I mentioned my tiredness at a routine visit and of course was put in the MS box, but when the pins and needles started, I guessed they must be right.
My mindfulness practice enables me (in the main) to accept the feelings that I have for what they are: Feelings. And this has served me well. I have been able to keep a sense of calm, able to be in the present and open to what is around me.
Did Mindfulness make me drop the ball?
I was so at ease it seemed, but did this make me lose the big picture? Was I so Ok with how things unfold that I dropped the ball?
I had actually, developed a sense of complacency and acceptance of something that actually wasn’t there. Unlike the former me and the me that advises my clients, I had only gone and put myself myself in the box. Or was I really just at ease with it.
Well no, I wasn’t at ease with it. Because I did something that I am vehement about, and that is to not drop your self care. My mood dropped, my level of self care with it. I had a real sense of being defeated, which surprised me.
But I was tired, I was too tired to be honest, and it seemed easier to accept what I had fought against previously.
I had to step away from my work plans, the summer holidays were lazy ones, but, it was needed by all, and actually despite my energy was one of the best summer breaks we’ve had. No rushing around, no filling time, actually spending quality time as a family.
What have I learned?
Perhaps, I could have listened to my gut, realised that this tiredness was different.
I picked myself up, and I’ll admit it was a slow process and I am now feeling stronger, less tired after 2 months of iron therapy. Im taking each day at a time, setting no big goals and Taking care of me.
I’m back to my oil routine, diet and as energy allows the exercise will come.
I think perhaps most importantly, the belief that it’s Ok. There’s no need for self recrimination, no need for “I should have’s”, it is what it is, and the MS tiger still sleeps. Its just that I awoke a whole heap of others!
I’ll keep you posted..