Fatigue, I Hardly Knew Ye

I really never knew what “fatigue” was until I contracted Lyme disease. Honestly, I cannot even think of a useful metaphor to describe real life altering fatigue. I could say it feels like cement blocks are tied to your feet, but that truly only tells half the story. I could say it feels like you are stuck in quicksand and cannot move, but again, only a slice of the true experience. True fatigue cannot be explained easily to those who have never experienced it for any length of time. Maybe imagine if you will how you have felt at your MOST TIRED. Where you cannot even move. And then, try imagining experienceing this daily for months and even years. Fatigue encompasses everything: the physical, the mental, and the emotional. Not one aspect of being a human is left out from the fangs of fatigue.

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I know what tired means, and I am sure you all do too. And sometimes, being tired is a good thing. It can mean that you had a productive and busy day. I remember when I was a kid, I would be tired from running around all over outside all day. Having dinner, a bath and then falling right to sleep conjures a happy memory. But fatigue? Real fatigue? I never knew ye before this. Now, I can pinpoint the ebbs and flows as accurately as a Richter scale.

Since before being diagnosed with Lyme in March 2013, I would suffer phases of fatigue. It was cyclical and so I attributed it, during those times, as just pushing myself too hard, taking on too many projects, doing too many activities. It would linger for a bit and then disappear. Gone are those care-free days. Not anymore. The fatigue has latched on and for the past few years, I have only really experienced varying degrees of fatigue. But it all boils down to the same thing: I’m too exhausted to do much of anything.

I completely understand that people who have not experienced severe fatigue struggle in trying to relate. I did as well in my Pre-Lyme life. But fatigue is not being tired. If I am tired, I sleep. I sleep and then feel rested and ready to go. With fatigue, not so fast. I can be soooo wiped out and yet. When I climb into bed, I may not be able to sleep. I go to bed tired and wake-up tired. During February, it was even worse. I could barely get up and go to work. Some days I just didn’t make it.

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Never in my previous life had I spent a whole entire day in bed because I was “tired.” Now, that happens periodically. There have been several weekends this spring where I only manage to get out of bed to use the restroom and maybe to eat. Even eating can feel like an overwhelming burden sometimes. For a few weeks this past February, I would be so fatigued, I woulod actually feel sick to my stomach if i had to move around at all. Now that is some “sh*t just got real” stuff.

And yes, my doctors and I have run the gambit as far as making sure nothing else besides Lyme is causing this issue. Regularly, my doctors check my vitamin B and D levels. I give myself shots of B as well as Glutathione (helps the body make energy) on a weekly basis. I have cut almost all sugar out of my diet (not all but a lot!), I only drink one cup of coffee a day (usually!) and I steer away from caffeine the rest of the day. With help from medication, I can in fact sleep a solid 8 hours without waking up with joint pain during the night like I was doing before treatment.

Still. The fatigue hangs on. Being so tired makes it hard to concentrate, hard to be productive, hard to communicate. Sometimes, I just try to stay away from people because it is so exhausting. Sometimes, merely watching television is an overwhelming activity. Sometimes, I feel like I am looking from the outside in on myself and I wonder, WTH?

One story that is actually very helpful in communicating fatigue to “normal” people is the Spoon Theory written by Christine Miserandino @ www.butyoudontlooksick.com  This anecdote has helped me as well as some of my family and friends to understand in a relatable way.

Luckily, right now, I am on an upswing (if you will) as far as energy is concerned. Now, let’s not get crazy – this means that I can basically get through the day at work (a big deal!) and then rest in the evenings and on the weekends. I am not choosy; I will take whatever improvement I can get at this point.

I hope this post finds you healthy and happy, my friends. Until we meet again – Belle

 

 

 

20 Comments on “Fatigue, I Hardly Knew Ye

  1. I know the feeling. I know the feeling when friends come and you are too exhausted to listen to them, let alone answer them. Last week, I had The Shopping Lady, the “boiler man” for the yearly overhaul of the central heating system, and British friends who stayed from 4pm until 9pm – all on different afternoon. When Friday came I was so exhausted that I had to resign an outing of an hour or so in the afternoon. I stayed in bed instead and was not able to eat. Hard to make people understand!

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    • I know you totally get it Camille. We have to try to ration our energy if we have any throughout every day. Sometimes, there just isn’t any at all. And yes, sometimes just trying to string together a sentence is a real challenge, let alone carry on a conversation!

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      • Oh, so true! I want to go shopping on Friday with The Shopping Lady who does the shopping for me and The Girls (my wards) but I had to tell her today that it would depend of the stress of the week and the energy I would have spent. I hope everything will be all right. But who knows?

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      • I’m the same! In my head I always think I can do more than I can and should. Like you, I want to go get a haircut Friday after work. But even today, I’m like, can I realistically go do it? Probably not.

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      • There is something positive to take out of this – when I think positively. I learnt to value the present and the daily little things: I am grateful for the sun, for the spting, from what I see from my bed when there is a blackbird coming close and watching me, for the time when pain eases, when I am less anxious or panic stricken. For when I am able to actually do something.

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      • I agree. I’ve finally come to terms with that I’m not going to be the person I used to be. Like you, I really try to savor the moments if possible. And also to remember that when I do feel awful that that will pass as well. Hope you have a pain free day, friend.

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  2. I’ve always referred to my fatigue as “body melting” in a way that you feel like every cell in your body could just dissolve all at once. I get it. Keep fighting fellow warrior and may the spoons be ever in your favor!

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  3. Pingback: Hey Tired, Meet FATIGUE – Read Between The Lyme

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