But you don’t look sick

This is about living with a chronic health problem. Well, two of them actually.
The obvious one is asthma. It is seasonal. If the air quality in the summer is bad, I have trouble breathing. It’s not the heat, it’s all the crap that hangs in the air and irritates my lungs. I have trouble again in December or so when everybody comes inside and the heaters start blowing and damp sets in. Sometimes this keeps going through spring allergy season and sometimes it doesn’t and I get a break in between the two.
What’s it like? Sometimes it’s like someone has their hand on my throat with just enough pressure to restrict the flow of air. Sometimes it feels like I am at a high altitude and my chest is moving in and out but very little air is moving through. At the worst, it feels like I have an elephant on my chest keeping me from getting any air in or out. That’s when I start gasping like a fish out of water and get get dizzy and need help.
When I am more tired, the asthma gets worse, and the worse the asthma gets, the tireder I get.
And that brings me to the other problem….Chronic Fatigue Syndrome. I was actually diagnosed with Fibromyalgia but I don’t have the crippling pain that goes along with it. I count my blessings, no matter how small. I do have a lot of the other symptoms and it is an overlapping diagnosis.
I actually had a manager roll his eyes and laugh when I said I had CFS.
Imagine the tiredest you have ever been, after a day of exhausting physical labor. Now imagine you feel like that EVERY DAY when you get off work. Next, imagine you’re too tired to sleep (yes, you know that one, your mind keeps jumping around unable to settle and drift because you have been forcing yourself to keep moving for way too long.). So, your sleep is fragmented and you keep waking up or you lay there flopping like a fish out of water trying to find a comfortable position. You may give up because you’ve already tried turning every way you know and it is SO not working…..!! At some point you just want to scream but you can’t because that would wake everybody else in the house…but then…maybe then they would understand your frustration. So you get up and read or check Facebook and try again for a while. And then after an eternity, the alarm goes off and it’s time to drag your exhausted body, howling and screaming, into the shower to start the next day.
And that brings us to the brain fog. At its worst, it’s hard to string three words together into a coherent sentence, if you can think of a sentence three words long. It’s doing something you have done a thousand times before only to get lost somewhere in the middle and wonder what you’re supposed to do next. You have to go back and think of the steps, one by one, and figure out where you are in the process and remember what’s next. Or you remember what you are doing until somebody comes along and asks you something and loses your place in it. You can lose your train of thought so badly you don’t remember what state that train was in, much less find where you left it.
And the the noise…the noise wears me out. The store gets very noisy and loud after about 3:30 with moms with kids that have been at school all day and want to use their outdoor voices. And the meltdowns. At least one kid has a meltdown involving shrieking at the top of their lungs incoherently with that unique, piercing sound only small children are capable of. Makes me want to join in. The sheer volume of noise sometimes makes me want to lay down in the floor and sob. But I can’t.
I work for the world’s largest retailer and you lose your job after a certain number of unexcused absences so it becomes a matter of keeping moving because you don’t have a choice. You keep going to keep your job because you have to have the health insurance to cover your asthma. I can get what’s called Intermittent Leave of Absence for the asthma which according to federal law excuses me from working when the asthma prevents me from being at work. So that means I have played the asthma card when I really was too tired to function on any level. And there have been those days.
There are some things I have found that help. I use 3 inhalers for the asthma and between them, it’s mostly controlled except when it’s not.
For the CFS, I have found a combination of supplements helps, melatonin at bedtime to help me sleep, magnesium taken at lunchtime also helps sleep quality. Rhodiola taken at breakfast and lunch seems to keep me alert and awake during the day and being up during the day seems to make sleep much better. Getting a solid 8 hours of sleep is best even though that doesn’t always work.
So, if someone tells me I look tired, I just smile and think to myself “you have NO idea”.

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