The Energy Crisis

If you are non-energy impaired and you are reading this and wondering what does ‘non-energy impaired’ even mean, please keep reading to better understand. If you are ‘energy impaired’ and reading this I’m sorry that you and I are in this boat together. If you are anything like me you once had a good bit of energy to toss about as you saw fit. You were active (so many of us were actually very active), you loved life. And then one day, or month, or year, your energy began to fade. Thinking it would certainly return you may have pushed back, digging deeper, only to find this was making you worse, for most, significantly worse. Eventually you realized after watching the pattern repeat itself that despite medical professionals telling you to keep pushing that you were actually harming yourself and becoming more ill. And somewhere during all of this you began to come to terms with it, you began to realize that you actually have a very small allotment of energy on any given day, or in any given moment and if you push harder you will surely pay the price as your body goes into energy crisis mode. As you began to look around you realized the crisis looks different for all of us. The range is so wide that I can’t even begin to encapsulate it; the symptom list I’ve seen has 144 items listed.

So what’s it like to be energy impaired?

Well, if you are like me you are constantly monitoring your energy to make sure you are not slipping into crisis mode. This is not day by day, it’s hour by hour, and moment by moment. We push so hard to survive, to simply function (things like getting to the bathroom and eating), that we become somewhat used to this constant feeling of deprivation and it’s actually necessary to stop and think…am I really okay right now, do I need to stop before I absolutely come crashing down. Just to clarify, stopping for us may include: stop reading, stop writing, stop drawing, or stop cooking or bathing. Our activities are very limited compared to a non-energy impaired person, but even these very low energy tasks absolutely wipe us out. One of the more challenging aspects of this illness is that some people get better over time, while some get worse (some actually get better and then get sick again…I’ve heard this is actually pretty common) and we have no idea when or if either of those things will happen. So we live in this constant state of fear and warrior mode, we push a little, we fight, we struggle and we rest, all the while being terrified that we are pushing our energy into crisis mode. We fear getting sicker, and at the same exact time we are absolutely ecstatic over the smallest of accomplishments, because deep down we truly just want to return to our pre-illness energy levels and get on with our lives.

Sometimes we can feel our energy slowly draining, but other times, like a thief in the night, it’s just gone. Many of us have no idea why this happens or when it is going to happen. We could be standing or sitting somewhere and our body could just go into crisis, which as I stated above could mean about 144 different things for different people. For me it’s often shallow breathing, weak legs, shaking, dizziness, feeling like I’m going to pass out, confusion and disorientation. Imagine if this was your reality, knowing that at any time your body could just tap out. Now imagine wanting desperately to still participate in your own life. If you are non-energy impaired and you are still reading, let me just say, we push, folks, not just every day, but throughout every day, we calculate, we analyze, we estimate, we project, and we beg our bodies to comply. It’s a life changing adjustment, but slowly but surely we learn work arounds to survive. For instance I paint in bed with a small watercolor journal so that each day I make a new memory. My journal is not heavy and my arms are propped on pillows so I don’t have to hold them up; that’s one of an incalculable amount of examples. Just to add one more level, please remember we are mothers and fathers, children, partners, friends, and employees. In other words we all are emotionally indebted to someone and so on our better days we strive to do our best to show those around us we are still in it to win it. Hopefully you are starting to see that we are not ‘just tired’, we are fighting for life, for quality of life, to live our lives and all the while scared of becoming worse. What does worse like? It looks like bedridden, it looks like not being able to eat or talk. It looks terrifying.

If you haven’t walked in the shoes if this illness, Chronic Fatigue Syndrome, also known as Myalgic Encephalomyelitis, and I hope with all my heart and soul that you haven’t, you simply can’t know our strength. We are warriors, and fighters, we are so strong and courageous. We fight this silent energy crisis battle throughout every day for years on end. Unlike war though, where there are two visible sides, our battle is seemingly our health against our body and it’s invisible, that is unless you know one of us personally. If you are a witness you have seen firsthand when the battle pushes in and we are defeated on our flare days but then, if we are lucky, you will see on our better days when we gather our troops and push the illness back down. If you don’t know one of us personally and you don’t have the illness yourself all I can ask is that you please remember that energy is a precious gift that is far too often, albeit unknowingly, taken for granted and there are millions of us wishing we could be just like you.

Thank you for following along! Below are a few of my little watercolors as I continue to follow along with the daily prompts on World Watercolor Group via Instagram.

 

13 thoughts on “The Energy Crisis

  1. I was one of those people that got sick. Then started working out, started getting better. Kept pushing myself and eventually working in the fitness industry until I got sick again. Really sick. Recovered briefly- barely getting by and losing jobs because of illness. I got really sick again in 2011. Never recovered. Just gets worse.. I have a serious energy crisis.. Cheers to you. 😊

    Liked by 1 person

    1. I’m so sorry to hear of your journey. I too pushed and pushed, I had a FM diagnoses in ‘04 and will always wonder if I pushed too hard and triggered CFS. To hear that you are getting worse is heartbreaking. I know ‘life isn’t fair’ but just how unfair does it have to get? Hoping today is kind to you 🌸

      Liked by 2 people

  2. I know I push myself too hard even post dysautonomia diagnosis. In theory I’m trying to be better but my blog post I’ve half written today on a (scheduled legal holiday, not sick day, at least) day off is part one of a two parter where I’m talking about what I do to survive how much I keep overdoing it. The second is intended to be about what I do when I inevitably crash. Guess I haven’t worked out energy management after all.

    Liked by 1 person

  3. This is sadly true. I knew I was pushing myself too hard this year, but I felt I didn’t have a choice. In 13 years in my current position, this year was the most challenging/stressful . Now my job is safe- for now- but my health is as bad as it was when I was first afflicted with this damn disease 8 years ago. If I’d known what I was doing to myself, I’d have chosen differently.

    Liked by 2 people

    1. There seems to be a very strong correlation between this illness and people who are very driven. It’s heartbreaking to see all of us pushing to survive and concurrently desperately trying not to get sicker. The balance is so delicate and different for each and every one of us. Please take good care🌸

      Liked by 2 people

  4. I can really relate to this. About 2,5 months ago I had a pretty bad energy crisis. It felt like I was back at square one. I was so gutted, because I had started running twice a week and was so chuffed that I could run 5 minutes consecutively 3 times with a 3 minute intedval. Thankfully though things are starting to look up a bit. What has really helped me is Herbalife (I am not a seller myself, just sharing my experience 🙂 ). I have been having some OK days and even some good days (we all know how precious those are) since I have been taking the formula 1 shake in the morninv. I am not sure if this would work for other and it is quite (OK very) expensive, but perhaps it is something to look into? 🙂 They do have trial packages so you can test it out for about 6 days. Do look around for reviews about the seller you approach though. I know from others that some can be a little pushy in getting you to convince others to try it as well. I live in The Netherlands so I won’t be able to suggest anyone unfortunately :(.

    Liked by 1 person

    1. It’s so nice to hear you’ve found something that helps! It’s such a wonderful feeling to get relief. I take a clove of minced, raw garlic in a bit of raw honey before bed. I swallow it like a pill…it’s gross but I notice a slight difference and it’s so worth it. Hoping your day is best as can be and thank you for the recommendation, I’ll check it out!🌸

      Liked by 1 person

  5. Emma (Not Just Tired)

    Such a great description of the “energy crisis” of life with ME/CFS. You sum it up perfectly. Everyday is a constant battle of trying to suss out what you may be able to manage, or trying to work out what you did that made you feel so terrible. We constantly have to analyse every single activity, which in itself is exhausting, but essential to try and avoid any potential crashes. You’re so right when you say that unless you know one of us personally then all of these daily battles are invisible. It’s tough going isn’t it! Thank you for writing this. It’s always so helpful when someone puts into words exactly how you feel.

    Liked by 1 person

    1. I’m sorry to hear your wife is battling too. It’s a cruel illness, not just for the sufferer, but for the family as well. It’s terribly difficult to watch as someone you love struggles with chronic illness. Thank you for your kind words and hoping you’re both doing best as can be today.

      Like

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