The maze of misunderstanding when it comes to chronic illnesses, feels busy and confusing. For those that have it and those that are close with someone who has it.
Whether its chronic fatigue, or something similar, the feeling of being misunderstood is such a common thread, and a hard one to not attach yourself to.
For me, I speak from the experience of Chronic Fatigue. But for others it may be something else. I just know that despite the titles being different, and many of the symptoms too, there is a selection of common themes amongst them all. One of these I know to be there, is the challenge of articulating quite how it is to have a chronic illness. The articulation of the fatigue or the pain or the discomfort, is a skill I have been trying to figure out the last four years.
Until I was introduced to The Spoon Theory by Christine Miserandino, just the other day. This is the first time in four years I have felt understood.
Something else I find tricky with this, is the fact that I am still learning about it and getting my head around this Chronic Fatigue game. I’m still very much in the process of figuring out what is too much and when to say no. What rest is acceptable to take around friends and what is not. And my confidence with speaking about what is actually going on health wise is slowly beginning to grow. For the first time in my life I’m allowing myself to go to friends but rest and lie down whilst I’m there, and to actually share how I am feeling, rather than feeling embarrassed, confused and tempted to always sweep it under the carpet. Is this okay? Yes. Provided they are the kind of friends that don’t mind, and the ones that will hear you out. Because until now I have always tended to keep as much of the illness and fatigue to myself. I have only ventured out and about when I have felt like I have enough Spoons or have some back up ones in my pocket, in case. But the fact is that right now, if I followed this rule I used to have, I wouldn’t get anywhere except ten yards down the road, before turning around and heading home again. So, I have given myself this. Even if the friends don’t understand what you’re feeling, just knowing they will let you lie in their spare bed at any point, or doze in the back of their car during the twenty minute journey, or lie on the sofa after only being there for ten minutes, is the biggest blessing to me right now.
The fact is, I frequently misjudge my energy, or use it up too quickly, only to come crashing down ten minutes later. This is where my greatest complex comes with Chronic Fatigue. Am I making it up? Maybe I’m not actually ill. Maybe if I just pushed on through, I would be okay. No. No I wouldn’t. I’ve tried this enough in my life to surely know that that theory of mine is a load of trash.
For me at the moment, my main symptoms are Adrenal Fatigue and liver symptoms. With both of these you find yourself on a bit of a rollercoaster of misjudgement. Misjudgement of your own body. Adrenal fatigue makes me overtired and physically wired. My adrenals literally feel out of whack. I get over stimulated by the simple act of watching tv, listening to music, or having a conversation. This overstimulation happens in the blink of an eye. Before this I was feeling super ill and super shoddy, but the over stimulation of whatever activity I am doing, kicks past these symptoms and for ten minutes I HAVE ENERGY! Not the nice kind – the seemingly unnatural, wired, kind – but still enough energy to kick you on through. Until ten minutes later, this hit of adrenaline has run its course. You’re out. And your fatigue, malaise, nausea and headaches are back in. Suddenly: You. Have. To. Lie. Down.
Liver stuff is the same. Or at least very similar in the way it manifests. Resting and being still can often really help the symtptoms of a tired liver. Because, for me, if I am too active for my body in that moment, the blood pumping and my body temperature rising, causes the toxins that your liver is struggling to process and release, simply be pumped right round your body instead. Only to five minutes later get hit with a tidal wave of nausea, flu like symptoms, headache and pain. It sucks. This, with the adrenal fatigue, causes pushing yourself to be a total No No. And in many ways actually impossible. With both, whatever symptoms come, they literally sweep the feet from beneath you and all you can do is mutter something and take yourself away quietly to your bed, or grasp hold of the nearest sofa and cling on for dear life. Because, in that moment, you simply HAVE to give yourself the rest you need. Or the bite to eat. Or the drink of water.
The tricky part in this, and the bit that confuses me hugely, and surely those around me, is that combine the above two with PTSD, and you get a rather interesting attire of symptoms or characteristics. Because with PTSD – the thing that has caused my adrenal fatigue – is a fight or flight state that frequently kicks into play. Randomly or because of a trigger. And this energy has to be used. So, in contradiction to all the most present symptoms I have, and all that I describe above, is a sudden onset of kick ass adrenaline. Because this kind of energy causes more harm than good if you try to force rest upon it, it has to be used. So I’ll dance, or I’ll dive outside for a brisk walk. Or I’ll simply tidy my room really bloody quickly. And then, ten minutes later, I’m back to being knackered. But at least I’ve released that stored up trauma energy, which in itself feels like a blessing.
The sad thing about chronic illness and its maze of misunderstanding it can often bring, is the fact that it simply becomes easier to spend time alone. Sometimes it’s pure necessity because the interaction alone is too draining. But even on days when your Spoon count is higher, the unpredictability and the randomness of it all, becomes too much to have to worry about sharing with others or committing to anything more than a coffee shop meet.
“But you were fine a minute ago?” People say.
“Are you sure you feel ill – maybe its just anxiety?”
“You look fine.”
“Maybe you just need to stop thinking about it?”
No. No to all of those. It’s that my body is out of whack and completely exhausted, but doing its best – as your body always does. And I am still learning all this myself, because this process of health is ever changing and ever developing. So forgive me for my humble offering of energy. Forgive me that it can be so sporadic or so random what I can do. Forgive me that it must seem so weird and unpredictable, believe me it IS. Forgive me that sometimes I don’t reply to a text or a call, and sometimes I am so late it must look like I just do not care at all.
The truth is, I care so much. And because I care so much, it breaks my heart to not be able to explain this properly to those I love around me. I just wish I could articulate it in the way that it really is. Instead I end up fluttering, stuttering and bumbling through sentences of waffle, trying to articulate how it is for me in that moment or in that day. But the truth is, it never ever ever does it justice. And sometimes I wonder whether it just makes things worse, and more misunderstood.
How do you explain why you have energy one minute, and HAVE to lie down the next? How do you explain that this sudden hit of exhaustion that can come if you’ve overdone it, or even if you haven’t, is not the regular kind. I dream of the regular kind. Instead it’s an exhaustion that runs through whole being, leaving your body like lead and an inability to communicate, and your mind like a haze of fog on a winters night. How do you explain that you can’t just push through? How do you explain how the nausea you’re experiencing is taking over your whole body and you can’t find the words to speak? How do you explain that you haven’t text because your eyes are too sore to look at the phone screen? How do you explain that the clinking of glasses and the gentle sound of the radio is too much for your sensitive system? How do you explain that simply using up this energy to articulate what is going on for you in this moment, is precious energy you don’t have. You just need to be horizontal.
And most of all, how do you explain how you feel like absolute death on the inside and seemingly radiant and fine on the out? This is the one that baffles me. I look in the mirror and there is not one giveaway that I am experiencing ten or twenty different symptoms right in that moment. And symptoms that floor me. Except for the look of confusion I give myself that you can feel this way and look this fine, there is no sign of illhealth.
I just don’t get it.
So why would other people?
What I do know is that, you don’t really need to explain anything. You just need to know that what you are feeling and whatever sensation is most present for you, is the truth for you in that moment. If it doesn’t make sense for other people, then that’s okay. It’s hard, but it’s okay. And it’s nobody’s fault and nobody’s thing they’ve got to change or put right.
My hope with this, is my hope with everything in life at the moment: time.
I hope that time will help me to continue to develop my own understanding with my limitations and body’s pattern. I hope that with time, those around me will begin to get more of a detailed picture painted of what is going on. And I hope that with time I will keep on learning, trusting and seeing that it is
okay ESSENTIAL that I give myself what I need in the moment, and that I lie down and rest in the moment that my body sings for it. And most of all, I hope that with time my lifetimes habit of pushing myself at every possible opportunity, takes a hike. This I am beginning to see, is slowly happening.
I also hope that with time, you readers will also see how essential it is to give yourself what you need in the moment, whether you have a chronic illness or not. Because we all, after all, deserve our full love and compassion. Always.