Chronic illness: the maze of misunderstanding

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.

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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.

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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?

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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.

Love.

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22 thoughts on “Chronic illness: the maze of misunderstanding

  1. I think that you’ve just found exactly the way to explain it all, dear friend. Perhaps it is a matter of printing it out for others to read? I relate very much to all that you’ve described. I have made huge strides, and part of it is accepting how I am. In itself that has made things easier, as it takes away the internal pressure and frustration that I placed upon myself.
    I loooove the idea of laying down on a friend’s couch, or having a bit of doze on a spare bed. The thing that crosses my mind, is that there is at least one person I can think of that I could offer a couch or spare bed to when they visit me. : )
    Love, peace and lotsa lovely rest,
    Jessie.

    • Thank you sweetpea. I love that you can think of people you’d offer your couch up to – I haven’t thought of it that way round, as I seem to always be the one kipping on other people’s couches! But it’s nice to think of that, thank you – I realise that I would do the same for my friends, so it’s trusting they don’t mind doing it for you šŸ™‚
      Big old well done’s for the high strides and letting go of those internal pressures. Man, that is my current project. It’s happening… For me identifying the critical characters and expressing them as cartoons has helped so much – it makes me laugh and it also softens the hit of the critic. Lots of love and peaceful rest to you too my dear x x

  2. I think you express this very well–I always get upset when people try to diagnose you or make stupid statements when they have no idea how you feel–those are the people to stay away from
    true friends do not judge or ask stupid questions or make insulting statements–anyone who takes the time to try to understand is a true friend indeed
    sometimes people just do not take time for other people

    • Thank you, peach. I’m sorry you have those people around making those statements, but I so understand. It really does my nut when people share their piece without knowing anything about what they’re talking about. But, often people are actually trying to help. It just can come out the other way. And sometimes they just are opinionated twats, and we can try to let whatever they say bounce right off us. They simply don’t understand. And, to be fair, it is a hard one to understand. I only just bloody understand it myself! That is where I always get knocked confidence wise when I hear something critical or judging…I immediately get thrown and start wondering whether they’re right, dammit. But, it comes down to lack of education or knowledge on their part. And as my knowledge with it has increased, and my confidence in myself, I have found I am able to not let their words get soaked up quite so much. Hope you can find trust in yourself too and find comfort on here, because so many other people are going through something similar. Even if they’re not around you in person, they are there. Hope you’re having a cosy day. Big love X

  3. What a beautiful post. You explain the exhaustion of chronic illness so well. My sister and I were just talking today about how socially isolating this sort of illness is, and how little understood and supported sufferers often are. Wishing you wellness and peace in your heart, Nicole xx

    • Thank you so much for your words sweet one. The isolation is such a common theme to those with chronic illnesses, but normalising it and sharing it over these blogs really does soften that hurt, I am now finding. For me it gives me that sense that you can live your life however it works for you, if that makes sense. Until then, i.e. until now, I have just constantly felt like a failed alien that can’t do more than an small nugget of work without needing to crawl back underneath a duvet! But being online a bit more and reading others stories, makes you see that it is an essential part of healing that you need to give your body.
      Enough words. šŸ™‚ Big love to you x x

  4. Beautiful. Beautiful, honest thoughts, thank you. One of my favourite things to say a million times a day is “TIME IS THE ENEMY!!” but your post has made me stop and think about that for a second. Actually, with chronic pain, time is the only thing that seems to help. Love and relaxation xxx

    • Ah, thank you so much. I’m glad it made you think about time – that made me laugh what you say to yourself. I didn’t use those exact words but I have ALWAYS battled with all the things people used to say about giving it time, time is a healer…blah blah blah. I used to HATE that. “Fuck time. I need energy NOW!! I can’t live my life like this?!” But just recently something has shifted and I realise that maybe actually people are right…time really does heal and also this time we give ourselves to rest is time we need, and with time we will feel full of beans again. Basically to trust that this time is something we need for ourselves is something that helps me. But other times it’s so hard and infuriating (which is healthy to feel too!) when the ‘time’ we’re talking about feels like forever. But it won’t ever be, because it just doesn’t work like that. And it won’t even be that long, I know it. Lots of love x x

  5. Thank you for visiting my blog – it lead me to your thoughts on the www! I don’t feel so alone… I’m so thankful for you and sharing your experience, thoughts. I am just learning about this fatigue I have been experiencing. I am fed up. I know there is something “wrong” with me, but I am struggling to learn what the culprit is, if any. I hope you discuss more of this topic in future posts.
    Rest peacefully! Tawnya. šŸ™‚

    • Learning what the culprits are, as you say, takes time. Speak to anyone with chronic fatigue and this is so normal. In a way it’s part of the journey too. I’m still realising elements to the equation of falling ill. It never ever is just one thing. And it is never just physical or just emotional. It is such a mixture. I hope you have someone who can help you share that process and journey? I have ended up with various alternative therapists come in and out of my life, all bringing a different nugget of advice or opinion, to help paint the picture of my health and history. And it is still very much happening, because we constantly change and new things happen and new things are discovered.
      I’m really glad you don’t feel so alone now, and know that there are so many people out there that understand! If you ever need to email or ask anything, hop on here or email: metaphoricalmarathons at gmail dot com.
      Tonnes of love X

  6. This is a brilliant piece of writing which should be sent to every doctor in the land to help them understand what it is like to have a chronic condition. I have Lupus and spent years suffering before I got a diagnosis and help from a wonderful young rheumatologist. I don’t even bother trying to explain to other people, like you I avoid most social situations if I know i will be overstretched.
    I do hope you do something with this post as it is too good not to be used for a wider audience.
    Love and understanding to you x

    • Wow, what a wonderful reply. I’ve had to read it a few times over! šŸ™‚ Thank you so much love. Means a lot. I am sorry you have spent so many years suffering before getting a diagnosis. That is such a common thread and it makes me so mad that it continues to happen. But what a gift to then find that rheumatologist. Feel free to show anyone this post if it helps you at all – I would be honoured. Or any doctor šŸ˜‰ A friend joked the other day how a doctor should not give out advice or treatment suggestions to anyone with an illness they have never had…! I was like, YES. Obviously slightly unrealistic but a nice thought! Not for the doctors – for us. Big love and understanding right back at you X

  7. Sending hugs on your way! Maybe you’re right, you should not explain it at all, it takes energy from you, and peole won’t get it anyway. Those who love you will stay around anyways. Experienced this extreme fatigue when I was hit by stress, couple of years ago so I know how it feels. Lonely. The more I explained the more frustrated I got. Finally I stopped. Just let it be, accept it. Don’t try to fix it. And maybe you’re too caring, too nice. Maybe the whole point is that it’s time for you to care for YOU for a while and forget about others. šŸ™‚

  8. Chronic anything is always difficult. One has to learn the boundaries of whatever you are dealing with and how to work well within those boundaries. You also have to learn how to handle it when you pushed beyond those boundaries…how to recover and find equilibrium again. It is tougher when it is something people cannot see. I have found myself being impatient with others when it “seems” like nothing should be wrong. That is when I have to remind myself that I need to treat others as I want to be treated…with trust and dignity. If I want to be believed, then I need to believe…and trust what they tell me. I try to live my life so that I don’t push the boundaries and, hopefully, do not have to explain to anyone else why not.

  9. Thank you for your beautiful honesty! I have suffered from CFS and Fibromyalgia and am much better now. If you’d like me to share some things that helped me just let me know and I I can email you.
    Wishing you health and happiness!
    Cx

    • Oh wow, I would so love that. Thank you. And equally, if there is anything I can do for you just ask! My email is metaphoricalmarathons @ gmail . com
      So glad you are better now – that’s inspiring and heart warming. Lots of love X

  10. Hi beauty, Such an amazing post! And a joy to read, it bought up a lot of compassion feelings but also so much pride for you…I could hear and feel your strength in what you wrote even if you dont feel it yourself all the time. It is there, just like your energy, biding its times to come out and ‘ROAR!’ =)

    • You’re so so lovely. Thank you dear. Your words brought tears to my eyes! I think i have always known I have this massive bundle of energy waiting there to BURST out and let rip forever more, it just had to hibernate for a while and heal. But now I can feel it working itself back to be here and for me to trust it. There are so many more words that I could say about this, but now that I can see strength as a positive thing again, this trust for it and for health is beginning to blossom. Big love. Thanks for being lush. X

  11. Pingback: Yo’ own business | metaphorical marathons

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