The Ups and Downs of Positivity (and 15 Things to Do for a Better Tomorrow)

For the past year or so, I’ve been losing myself. I’ve always found this saying curious, because it’s not like I’m walking down the street one day and drop myself, or forget where I put myself like keys. But I’ve been gradually losing a sense of who I am, along with my values, passions, and so on. This is partly because for so long, I’ve been living in some sort of alternate reality. A reality that I don’t even know is reality, and that if it is, it’s a skewed, distorted and out of balance perception of it. Basically like the first German Expressionist films (just watch The Cabinet of Dr Caligari, 1920 — its disproportionate, twisted world is subjective to that of the tormented, unstable characters, and I relate to it). I talk more about my detachment/dissociation in my previous blog post here.

Anyway, I have found myself retreating so deeply into this tenebrous, clouded cage that I really haven’t been living a life. Now this isn’t new, it’s been happening since 2008 and I’ve almost killed myself because of it. However, although I’m always in that dark, clouded cage, it’s like fragments of myself have been insidiously breaking off and falling through the bars to crumble into non-existence. Hence, I’ve been losing parts of myself for so long, that it was only a few weeks ago when I realised that I was almost completely gone.

Almost. 

The good thing about being stripped back until you feel like you’ve reached the bottom is that you’re faced with a decision: You can either let yourself continue to rot until you die (which I was doing), unless you quickly kill yourself to end whatever this illusion of life is (which I’ve almost done many times), OR you can decide that it’s gone too far, the only way now is up, and only you have the power to make that happen. Now, I’ve made this last decision more times than I’ve made the decision to end my life. And I reckon that’s worth being noted, because it’s no small feat and I intend to keep making that decision for as long as possible.

The Optimism Bias and Gratitude 

After having an overdue breakdown the other week (that needed to happen for me to realise I need to pick myself up, make a change and move forward), the next day I attempted to ‘embrace positivity’. I tried an affirmation, saying out loud, “I love my life.” Wow… I could hardly even get the last word out, it was the biggest lie I had ever uttered (right up there with “I’m fine”). So, I’m going to change this affirmation to, “I love some parts of my life.” And go from there. No one can ever love every aspect of their life anyway, surely. Saying I love parts of my life prompts me to think about those parts, which in turn prompts the Reticular Activating System (RAS, a kind of ‘filter’) in my brain to be more attuned to positive thinking, prioritising information with positive aspects and making this the pattern, rather than the default mode of negative thinking. It doesn’t have to be big things, and I don’t even have to love some of those things, I can just like them.

Obviously it goes without saying that I love my family. That is a big one, and one I am very lucky to have. I also love being surrounded by, and having easy access to music (having my family made up of musicians). I love having the ability to play music if I feel like it. I love being able to write, whether it be something like this, songs, poems, letters, musings, or just in my journal. And then it comes to things we usually take for granted like loving being able to see. If I couldn’t see, I couldn’t see my family or people’s smiles, I couldn’t see the way the afternoon sun shines through the windows, or the moonlight, I couldn’t see the words I’m typing, the funny things my cats do, or Jamie from Outlander 😉, I couldn’t see the ocean, or even just the colour blue — the list is infinite. I love being able to hear, so I can hear music, people’s voices, and the funny expressions little kids come out with. I love having essential oils to smell and loved ones to hold, as well as access to clean water and quality food to taste and nourish. I love having a roof over my head, and the list goes on. I may not love my life as a whole or enjoy it, but that simple statement of loving parts of my life, opens up another whole dimension that I need to focus on more than I do, which is a step towards loving my life. Because I really am incredibly lucky. And I may be sick, but I do have some beautiful people helping me.

It’s easy to say I hate my life because of how much pain and discomfort I’m in constantly, because I’m not well enough to do the things I’ve been waiting to do for 11 years; and to pick out the negatives — like even though I can see, my eyes still give me difficulties; my gut can’t tolerate most foods; hearing gives me headaches and I have tinnitus which I’d prefer not to hear; I have a family but I’m a burden to them, so I shouldn’t inflict myself on them, etc. etc. etc., I could go on for hours. But it is not productive in the least and leads to incredibly detrimental long-term states.

Living in the past, regretting events or even replaying and picking apart fleeting conversations causes depression, shame and in my case, self-hatred. I have to keep reminding myself that living back there in anguish is stopping me from getting the most out of life now. We all have to do the best with what we’ve got, and adapt to our individual situations. Thinking of what you love and are grateful for, not just occasionally, but every day, is one of the most important ways to get to that happier state of mind and health. I have a little gratitude journal, but if I do remember about it, I often don’t find myself with the energy before bed to write in it. So if using a gratitude journal isn’t for you, then as cheesy as it may be, try putting small reminders around or in your room to think about the things you love and are grateful for, like photos, quotes, etc. Even if it’s thinking of a type of plant or bird, something nice someone said, a movie, an artwork, a colour, a song, a cat video, your favourite food, a phase of the moon or a comfy jumper on a cold day; they’re shifting your mind to having that optimism bias. There is nothing too small to be grateful for. See how small you can go, and you’ll find yourself loving and appreciating way more parts of your life than you knew possible.

(Note: to do this, it’s a good idea to take a break from screens and social media, and let yourself go for a walk or just sit without your phone for a while. You don’t always need a distraction!)

I was recently at the beach for a short break away, and while I was there, if someone had told me I could go anywhere in the world that I wanted right then, I would have chosen to stay right where I was. That was where I 100% wanted to be in that moment, and I am so grateful for that feeling.

I’m also trying to shift my mindset around medical appointments. Instead of going there and associating it with illness, thinking, “I’m here because I’m sick,” I’ll associate it with health, thinking instead, “I’m here because I’m getting well. I’m going to be healthy.”

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“Thinking of what you love and are grateful for, everyday, is one of the most important ways to get to that happier state of mind and health.”

Breaking away from thesick girlimage, and building selfconfidence

For many years, I’ve tried to make the conscious effort to not let my illness define me. But when my days are consumed with nothing but constantly feeling ill and in pain, and filled with medications and medical appointments, it can happen whether I’m making that conscious effort or not. And I’m not going to beat myself up about it, it’s understandable, and I’ve made efforts to change it. My illness is a reality. However, I felt more needed to be done so that I wasn’t identified by others as well as myself as “the sick girl.” So earlier this year, I decided that although I have to put up with feeling shitty on the inside (for now), I have control over how I look and present myself. Over the years, I’ve taken on the “sick person” persona partly by the way I dressed generally. Obviously, there’s no problem with that because the reality is that I am sick, and my body is intensely uncomfortable, so I want to make it as comfortable as possible on the outside, seeing as I have control of that part. I still dressed up if I went somewhere for a more social occasion, but that’s very rare. 

Taking a little bit more pride in my appearance doesn’t mean being uncomfortable, though. I still make sure I’m as comfortable as possible, because that is the priority. But I often wished I could look a bit nicer just in my everyday; and it took me ages to realise that I actually can. I don’t “dress up” – I just make a little more effort. And I still don’t make the effort everyday. But when I do, it’s my little act of self-love for myself, to help with my confidence and ridding myself of that “sick girl” image. I don’t plan on being sick forever, I have plans for my twenties and don’t want my illness to take over this decade of my life, too. If I dress more positively, I might appear as more positive, feel more positive, make others feel more positive, and just generally attract more positive, non-illness aspects in my life. It may be a long shot, but anything is worth a try. Because I do care what I think of myself, and that I don’t just sink into this hole of illness, as it is way too easy to do. I plan on getting out of the mud, and if I cake myself in it, I’ll just be engulfed faster. So instead I plan on getting the positives out of the mud (see my post about things I’ve learned on my journey here), and use it as a, I don’t know, healing bath or rejuvenating face mask instead of a toxic sinking swamp!

I’m not going to lie, making more of an effort with my appearance didn’t help my physical symptoms, not that I expected it to. However, it has made me feel like a bit more of a human being. Someone who could potentially be a part of society rather than hidden away as an insignificant sick person. I feel like people might pity me less, which is always nice; but most importantly, it has helped me not just accept illness as a defining trait. Instead of dressing to accommodate my illness, I’m dressing more to accomodate my style — the style that I have as part of being a person who is so much more than a disease. Because I am strong, and although illness has made me weaker, ironically, it has made me so much stronger.

I am always doing so much work internally to ensure my authentic self/identity, confidence, integrity and self-love is true to the core, so this surface-level factor is the last to emerge.

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“So instead I plan on getting the positives out of the mud, and use it as a… healing bath or rejuvenating face mask instead of a toxic sinking swamp!”

Give yourself a break

When my symptoms feel all too overwhelming and I just can’t function, it’s frustrating, but I need to tell myself it’s okay. When my pain or anxiety, for example, become too intense, taking all my attention and stopping me from being able to do anything at all, I breathe and tell myself that I’m so used to it that I can handle anything. I don’t stress out about it, making it worse. I find it’s best to just accept it and say calmly, “Okay, my pain is crippling. Hello pain, you old chum. You’re not going to be with me forever, but for now, I’ll do my best to deal with you.” Sometimes it can help to address the pain and focus on it going away, channeling healing energy into it, but I also like to take myself away from the situation. 

Often, it consumes me so that I can’t do anything, and just have to brave the storm. But if I can, I close my eyes, breathe in and out through the nose into my tummy slowly, and go to my calm, happy place. For me, I go to the ocean when there’s a wave coming towards me, and I dive underneath it. Suddenly the crashing sounds from above are silenced and everything is still. I hold onto this precious moment and just suspend, body stretched out in blue tranquility, underneath and away from everything that’s going on above. I feel the smoothness of the water and how it supports my body, and I take in the peaceful, undisturbed seclusion… A little longer. There’s no measure of time here. Then I push off the sand below me and let my body float up towards the surface of the water. This is the next best part, as I raise my head up, open my eyes and see the blue sky rippling just beyond the water. It’s being ruffled by the water in front of it, as if I’m looking at it through crystal. Looking up from down here, everything is glistening from the light of the sun. Now my head emerges through the surface where the ocean meets the sky, and everywhere is clear. I’m lying on a soft blanket of blue, surrounded by another blanket of blue, and I breathe in the fresh salt air. That’s the place I go to calm myself. 

…Or take an Epsom salts bath. If there’s anything that helps, do it. Just make sure you bathe in warm water and magnesium and not your sorrows. At least not every time. As I like to say when things are especially bad, “You’ve been through this many times before, and you can do it again.” I wish there weren’t so many “agains”, but there you have it.

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Important: less pressure for positivity

I spend so long wondering things like, “Why do I have to feel this way?”, “Why can’t I feel happy?”, “Why does nothing help me and why can’t anyone help me?” It’s not even self-pity, it’s just honest questions. And after a while, sometimes endless months, I always come back to the fact that the only person who can help me, get me out of the rut and who ultimately has control over my feelings and happiness, is me. And I am self-sabotaging. If I am the only person who can help myself, why would I impede that? 

Well, it’s true there are subconscious negative thought patterns that have made themselves at home inside my brain. But, there are also conscious things I can do to help take control.

Now, I can already feel myself internally rolling my eyes. I have thought all this stuff before, and whenever I’m reminded of anything along these nauseating “positivity”, or “hopeful” lines when I’m not in the right headspace, it angers me to the point of toxic internal rage. Then it just depresses me more because I just can’t make myself feel that way. And so I feel worse. My logic is this: if I have done all this “positivity” stuff before, made a grand declaration that “I control my happiness, and I choose to be happy – it’s that simple”, but then it only lasts a few days tops and I’m back to suicidal depression, guilt, angst, etc., then I figured trying to “stay positive” (ugh) was a lost cause. Dare someone say, “You just need to stay positive!”, may they Rest In Peace.

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“We’ve all heard it before and perhaps even rolled our eyes. Because it is way easier said than done. But just because I’ve tried before and failed, doesn’t mean I won’t keep keeping at it.”

But I was putting too much pressure on myself. I always do this. It’s all or nothing for these kinds of things with me. If I’m going to do it, it needs to be perfect. If I make a decision, I want to make it happen there and then. If I decide on a new routine to help with my sleep and feeling more like a person, I have to start and succeed immediately, no room for the slightest slip-up or adjustment. If I decide I need to pull myself out of the toxic mud swamp I’m drowning in, then I need to do it right away, to make the most of that headspace while it’s there, and then it needs to stay that way. And when it doesn’t, it means I didn’t do a good enough job, I was hopeless to think I could try anyway, why would I bother when it’s obvious I can’t be helped, and I spiral back down into depression, shame and self-deprecation. The thing is, because I can be an “all or nothing” type, I also feel that I have to be really happy, or not at all. And that if my happiness doesn’t last, then I’ve failed.

I’ve learnt that if we doggedly try to pursue happiness, it can sometimes just set us up for disappointment.

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But, I realised that I can be content for now with just not feeling like I don’t deserve to live. Sure I can decide to be happy, but after so many years of depression, it’s never going to happen overnight or even over months. The depression isn’t even going to go away completely. I have to accept this if I want any chance at happiness. Depression will always be there, but if I can start with not feeling suicidal, that’s a really important, positive, big step forward. And I need to give myself credit for that. Still feeling depressed, even deeply, is OKAY. It doesn’t mean that I’ve failed if I didn’t go from suicidal to happy overnight or that it didn’t stick. Of course it’s not going to! And, that’s OKAY. It’s a process. All I have to do is a little something, no matter how small, everyday to inch myself closer to long-term happiness and self-love. And if I have a bad day and can’t bring myself to do that, then I’ll let it be and won’t beat myself up about it. But even if it’s just making myself listen to a positive or semi-positive song when I don’t really feel like it, that’s something. Self-love is a constant journey that we’re on all our lives. We don’t “achieve it” and then stop. Rather, the longer we’re on the journey, and on the right track of the journey, the better we get to know the roads, and the more comfortable we feel.

Just like jumping into bed with someone at first superficial glance is hardly going to make for a healthy long-term relationship, our relationship with happiness and self-love can’t be on the quick, superficial level either. Relationships take time and work if you want them to last, and you’ve got to put the effort in from the inside out. And, just like fights happen in relationships, so do bad days with positivity. You get the picture. One fight doesn’t end in divorce, and one (or even 10) bad days doesn’t mean a failed “positivity mission.” It’s not about having no bad days, it’s about gradually increasing the amount of good days. I’m not going to beat myself up for having a bad day, or week, or month. These things happen, happiness and a positive attitude is just a work in progress. But at least it is progress, no matter how slow. And it’s about pulling yourself back up after that bad day or month. That is what matters.

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“Self-love is a constant journey that we’re on all our lives. We don’t “achieve it” and then stop. Rather, the longer we’re on the journey, and on the right track of the journey, the better we get to know the roads, and the more comfortable we feel.”

Here are some other little things you can do each day to inch yourself closer to a better tomorrow. (Key word being “better”, not “best”. And if it’s not “better”, a better day will come):

1. Go for a stroll – with no distractions – just breathe deeply and take in your surroundings. Choose ten things you can see, five things you can touch, three things you can hear, two things you can smell and something you can taste. Or do more of each. Just be present in each exact moment. Take note of your footsteps and how the ground feels, how the air feels, what the textures and colours look like. There’s so much beauty that we’re missing out on everyday.

2. While being present is so important (and an everyday struggle for everyone), having goals and aspirations for the future, and visualising what you want, is also crucial. Think about what you want to achieve, whether it’s travel or career based, etc. Then, write an affirmative note simply stating the fact that this thing is going to happen. At the end, write “no doubts” and place the note somewhere you’ll see it often, like on a window. Now you’ll have it on your mind and be able to visualise it coming to fruition everyday, without leaving the present for a while as you spend time trying to think about the future you want and perhaps even stressing about it. You can see the note each time you walk by, feel positive about it, and continue on with your day. Things like this also help your RAS in the brain allow you to see more information that’s relevant to this dream, thus opening more opportunities.

3. Embrace alone time – getting to know, love and accept yourself. Start loving your flaws, quirks, awkwardness, vulnerability, etc. Understand yourself, and it doesn’t matter if others don’t understand you. Because if you’re just being yourself – the self that you love – you will feel fulfilled.

4. Remind yourself to smile and laugh, and also to stand upright. Posture and facial expressions have more of an impact than we realise, even if it’s subconscious.

5. Write a letter or postcard to a friend or loved one. They’ll appreciate it – not enough letters are sent from person to person anymore – and you’ll feel good doing it.

6. Or write a letter to yourself! Just like you’d tell someone else their attributes and boost them up, tell yourself what you love about you, the things you’ve accomplished or endured with strength, your attributes and talents, etc. Then you can refer back to it and read it when you’re having a bad day and need that friend to boost your spirits.

7. Do something generous for someone else without expecting anything in return. All parties involved get an oxytocin and dopamine release! Science is showing generosity is the biggest positive emotional response for someone to rewire that limbic/amygdala wound-up part of the brain (emotional/primal area associated with things like anxiety, fear, etc.). 

8. Use colours to create a map of your emotions on paper. Be compassionate towards yourself. Any emotion you have is worth your attention.

9. Write a list, of anything (positive). Your favourite films or songs, a list of blue things, things you’re grateful for, interesting words, things you find beautiful, things about yourself you love, things about others you love, or even a list about potential lists you could make!

10. Make a playlist of music that makes you happy. Choose pieces from a happy time in your life, linked to good memories. Music that makes you smile, and dance. I know I can’t stand the thought of playing happy music when I’m really low. But if you start with a neutral song/piece, then gradually work up the happiness factor, it will help!

11. Make a playlist on YouTube of videos that make you laugh, then refer back. You can’t go wrong with cat videos, but I’ve got a suggestion: type in “cockatiel singing Totoro”, and you won’t be disappointed. Or just watch the film Totoro; but the bird singing the theme tune will make your day.

12. Essential oils. I use dōTERRA oils and love them. Find your favourites and rub them on pressure points and diffuse them. 

13. Watch a funny, lighthearted TV show

14. If you can, play a musical instrument as often as possible. Sing! Teach yourself a piece on the piano. Or do something else you love, like baking, art, reading, sewing, etc. Just make time for yourself.

15. Last but definitely not least, put some time aside to go somewhere with a mirror by yourself. Take your time, breathe deeply and look yourself directly in the eyes. Now, put your hand on your chest just under your throat and say to yourself while looking into your eyes, “I love you.” This is a self-love practice from Louise Hay’s book Mirror Work. It may feel strange or silly, but keep going, keeping eye contact with yourself. It’s normal to feel uncomfortable, as well as any other emotions that arise. Now see yourself as a child. Envision your sweet, innocent child self in front of you in the mirror, who is impossible not to love and have empathy for. Breathe deeply and say again, “I love you.” Whatever you feel, whether you laugh or you’re angry or even in tears, let yourself feel that with love, and without judgement. This is a practice to come back to and keep doing until you can see your authentic self, and love and accept that person.

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“Start loving your flaws, quirks, awkwardness, vulnerability… Understand yourself, and it doesn’t matter if others don’t understand you. Because if you’re just being yourself – the self that you love – you will feel fulfilled.”

So through practicing self-love, gratitude and generosity, I’m trying to teach myself to live with the optimism bias, changing my internal dialogue. We’ve all heard it before and perhaps even rolled our eyes. Because it is way easier said than done. But just because I’ve tried before and failed, doesn’t mean I won’t keep keeping at it. It can’t happen overnight — changing thought patterns is a long and difficult process with ups and downs.

Perhaps what I’ve said here is old news, but it never hurts to have a reminder. And if this has helped even just one person, then that’s something big, and positive that I can be grateful for.

It is worth noting that I wrote most of this article a few weeks ago on a positive whim after a long and serious, even suicidal, depressive low. I hadn’t felt “positive” in as long as I could remember. But even within that day, the positivity didn’t last. There is a never a day that goes by where I don’t feel depression, anxiety and anger. But on this day, I had more positivity than I had had in a long time. However, the next day it had diminished significantly, and a day or so after that, I had an issue with the port implanted in my chest when I was getting it flushed. It was about exactly something that I get anxiety about, and so this sent me on a downward spiral of intense anxiety of course, but also depression. As they always do, my thoughts automatically went to the fact that just as I had managed to try and pick myself up and make a change in my mindset, of course something like this had to happen. That was just my luck, it happens every single time. I felt stupid for ever writing this article, like everything I had said was a lie. I tried to tell myself the things I have written to help, but I felt it didn’t apply to me in some way.F376C25B-9584-47CA-A0C8-FE3A666FC79E

However, there was a tiny glimpse in the back of my mind of the fact that being able to be positive is knowing that you can’t feel like that all the time. It’s giving yourself permission to have bad days, but knowing that they will pass. So I let myself be. I felt horrible, and for valid reasons. And that lasted almost a week, when I felt that wave of positivity again. Then it went away again, and in the afternoon I tried to sleep it off. I woke up in the evening and felt so incredibly angry about everything, and anxious. But I eventually found my way back to a mostly happy mind and attitude again. And as I say, that is what counts. And that’s life. I didn’t feel like I could post this article before now, because I thought it wouldn’t have been genuine if I posted it when I didn’t believe what I had written.

But it will always be genuine, because we are all constantly exploring the ups and downs of positivity, with the aim of achieving more ups than downs. Now I know that those parts of me that I “lost”, needed to go in order for me to grow back other parts. And I can choose which parts I want to grow and nurture, building the person who I want to be, and, as always, needing the darkness in order to see the light.

Who knows what tomorrow will bring, but I will do what I can each day to keep an optimism bias and fill myself with self-love and gratitude. It’s a long process, but so worth it. So here’s to that, for all of us.

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“Envision your sweet, innocent child self in front of you… who is impossible not to love and have empathy for.”
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Disconnection and Being Among People (with poem)

It’s scary when I go to that place. Whatever that place is. I don’t know. I don’t know if it even exists or if I exist there. Everything is so obscure and distant. Far away and completely detached. I’m severed from reality. Like I’m blacked out and my surroundings are the illusory dream I see vaguely in my state of comatose.

I’m always there in some form, but it’s when I try and take cognisance of it that it becomes something more intense. Awareness is the last thing I have, yet I sit and try with every part of me in an attempt to bring awareness to my state of unawareness. Kind of like a type of meta-awareness/unawareness. I stare at my fingers which seem so far away and separate from me, I gaze at objects around me which seem so enigmatic and irrelevant. Like if I reached out and touched something, my hand – or what I think is my hand – would go straight through it. It’s like I’m observing a German Expressionist film in slow motion. I can’t make sense of anything here.

And other people are like the people in Back to the Future when Marty travels back in time to the 1950s. They’re walking around, carrying on as if everything is normal, because it is to them. Everything is so archaic and perplexing to Marty, and yet so ordinary to everyone else.

I don’t know if I, or the people I see around me, are real or phantom. If I jumped in front of a train, would I die, or wake up?

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I wrote the above passage a few weeks ago when I had just been in a social setting and was disassociating and thoroughly confused about the status of my existence, which happens almost every day. That last question is something I have pondered for years, and almost been tempted to test out a few times during suicidal episodes (don’t worry, I always err on the side of caution!).

Every day for most of the duration of my illness, I have experienced the symptom often called “brain fog.” I can’t imagine not having this foggy head, and over the years it has become so intense that it evolved into something more profound —the feeling of not living inside my body, or my environment. I have tried so many times to try and explain this feeling but words just can’t do it justice. Maybe some would have to take psychedelic drugs to feel the same sensation, but I don’t know why one would want to feel this way, as it is severely off-putting, to say the least.

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I feel a version of it constantly, but often it intensifies. This might be when I’m in the car on the way home from an appointment or in the shower; but it always happens dramatically when I’m around other people and with surrounding noise.

For example, if there is a gathering of people and someone is talking to me, I am trying to hard to: 1) Keep eye contact, 2) Focus on them and what they’re saying, 3) Show that I’m listening and interested, or at least trying to be, 4) Keep my balance, not get distracted by other things like noises and lights, or the pain and discomfort in my body and head, and desperately try to stop the right side of my face from twitching. During this time, my system gets overwhelmed with all the stimulus and concentration, and starts to shut down. My being removes itself from the situation, until all I can see is the nebulous face of the person in front of me suspended in white cloud, the mouth moving with distant words coming out that I can’t hear, or process. I’m not there. I’m just watching vaguely from a faraway place with a blurred but harsh medley of surrounding sounds drilling through my head. Things are swirling and moving around me and I feel like I will pass out at any moment. I’m unsafe, insecure and possibly nonexistent. Next thing, I hear words coming from my mouth, but I don’t know how they got there. I just hear my voice speak as though at the end of a tunnel, saying words I don’t remember forming. So where did they come from? If they’re mine, my mind created them, but I’m not connected to my mind, so where am I? Because I’m not with the person I’m supposedly talking to, and I’m not with my body. The strange thing is, they would say that I was there. Because they can see my body standing in front of them, and hear the words coming out of my mouth. They can see me, but I’m gone. If someone told me I was dead or in a coma, I would 100% believe them.

It also sometimes leads to a seizure. I can feel my brain isolated from everything else, shaking, tremoring. It feels like mush, jelly. And I feel nauseous and like I’m going to pass out. If I can, I leave the area I’m in, whether it be a family gathering or a public place, or sometimes it just happens once I get home from somewhere. My body is shaking and jerking, it alternates between collapsing in complete weakness, or becoming rigid, I can’t voluntarily move myself, and I’m completely unaware of my surroundings. I lose my vision and the capability to speak, and I’m paralysed in a twisted position with bouts of jerks and spasms.

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“Like I’m blacked out and my surroundings are the illusory dream I see vaguely in my state of comatose.”

I wrote a poem a few months ago in an attempt to describe my detached state of being:

Among the People

I sit among the people

Unfamiliar, faraway

Words spill out of my mouth

Without me knowing who speaks,

Or where they come from.

That distant sound of confusion

When you can’t tell if it’s rain or not.

Incertitude, blurred

White fog obscures my vision

Circled around my sight

The others seem to think I’m there

But am I?

I speak but do not form the words in my head

Before I hear them out loud

My body sits there among the people

But I have flown away

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So this is one of the reasons why, apart from finding it beyond exhausting, any form of socialising is so difficult for me. I come away from social settings overwhelmingly drained and depressed. Because the whole time, the other person can supposedly see this functioning, happy individual, but I’m in another dimension. My body is putting on that “I’m fine,” act for me while I’m on some weird vacation.

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Now, I find the philosophical contemplations of what is going on fascinating, but there’s also interesting science behind it. I can’t pretend to fully understand it, but I am aware of the basics, thanks to my doctor who generously shares some of his profound depth of knowledge to help his patients understand what they’re experiencing. At the beginning of this year, I started a new treatment, a form of functional neurology (neuro rehab), which is looking at re-balancing parts of my brain and associated systems. From being sick for so long, my body has of course been under a lot of stress. Put simply, parts of my brain and in turn my vestibular and proprioceptive systems are not working appropriately/not being modulated properly. My sympathetic (stress) system is dominant, which is an issue, partly because the sympathetic system fires anaerobic pathways which are very inefficient in production of ATP (fuel). Anaerobic pathways also have more formation of free radicals and lactic acids. Both sides of my brain aren’t doing so well, but especially having the older centre of the brain being wound up, causes anxiety, OCD, perseveration, rumination, etc.

My doctor has explained to me that my system is highly sensitised to my environment and I have a reaction to everything in it (eg. sounds, movements, light, etc.). I am therefore constantly firing physiological stress responses. For me, just the action of getting up and 63F8A15A-A1F5-49C9-8068-E471162C28CBtrying to function in gravity causes a demise. The systems of my body that have to do with where I am and where space is are compromised, causing disconnection. Plus, fatigue plays a big role, too.

I was diagnosed a few years ago with cerebellar dysfunction, and while I knew it had to do with things like my tremors, I didn’t realise quite what a major role the cerebellum plays in everyday life. The cerebellum of the brain receives the sensory information of the body and creates a picture of it. It is also involved with movement and the perception of motion, and feeds that information to the brain. If that centre is compromised, then you can feel disconnected. I also have an issue where I can’t perceive the lower part of my body, from about my waist down. I often feel like I have no legs, or no body whatsoever. That’s related to the cerebellum, as is the internal motion that I feel. 800D30AB-21FF-444C-BD28-17FDCA9E148E

Balance has to do with the vestibular system, which is subconscious. Basically, you shouldn’t have to think about your balance, it should just happen reflexively. When I’m having a conversation with someone, for example, I have to start thinking about my balance and use cognitive aspects. This means that over time I am draining other areas, causing deterioration and phasing out of reality.

The cerebellum is also involved in cognition, and modulates information that comes in from the brain. So there’s constant communication between it and other parts of the brain. When this is compromised, however, the output to the sensory information that comes in (like someone talking), is not appropriate. Essentially, it’s the system failing. There are also other crucial parts of the brain involved with all of this, such as the basal ganglia, which (amongst many other things) implicitly selects the appropriate output to a sensory stimulus, and also modulates the thalamus. But I won’t go into all of that.

I also have POTS (Postural Orthostatic Tachycardia Syndrome), which we’re also working on through this treatment. Essentially, it’s to do with not getting the required fuel to the relevant systems when I move. This has a knock-on effect in the body.

So, there’s some of what I have come to understand about a small part of my condition. Apart from finding the information absolutely enthralling, it helps me to have some sort of basic understanding of what is going on physiologically so that I don’t feel quite as crazy and panicked. I still feel unhinged, just not to such an extent!

Having said that, it would be nice not to feel like I’m on drugs and drunk at the same time when I literally do everything in my power to protect my body.

I am also aware that this dissociative-type state is to do with trauma and threat, and the body going into a space where it can be numbed and disconnected, to escape from the difficulty of reality. It also happens when I’m undergoing particularly tough or painful treatments or procedures, or think of a traumatic memory. So… thank you body for the protection I guess!?

Anyway, I’ve done my best to put my experience of this eerie phenomenon into words. I hope that it can help shed some light on this kind of aspect, perhaps make others feel less “crazy” or misunderstood, and just do what I always strive to do with my blog posts – raise awareness and spread understanding 🙂

Sending love to all,

Francesca xx

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“I’m severed from reality… The other person can supposedly see this functioning, happy individual, but I’m in another dimension. My body is putting on that “I’m fine,” act for me while I’m on some weird vacation.”

What Have I Learnt During over a Decade of my Lyme Journey?

Like most people on a journey with chronic illness, I find myself wondering what this is all for. Why do I have to go through all this? What did I do so wrong to deserve this? And perhaps the biggest one: What would my life have been like if I hadn’t been bitten by that dreaded tick? Who would I be?

Well, unfortunately I’ll never know what my life would have been, all the things I could have achieved by now, and the person I would have become. It’s easy to think of all the possibilities, but I have to stop myself from going too far down that route because it just gets depressing thinking of all the things I was doing before I got sick, all the things that were coming my way and falling into place for me. I was finding myself in music, sport and performing, going to school and excelling in my extra-curricular activities… I was popular, healthy and happy; and I didn’t know life any differently, so I took it all for granted.

It’s during those recurring “what could have been” thoughts that I try to remind myself of the good that has come out/is coming out of this crazy, painful, ongoing ride, as hard as that is. And sometimes I just can’t do it. But if I didn’t, I would go completely mad.

It’s now coming up to 11 years of illness, so at the beginning of this year, I compiled a list of things I have learnt during my tumultuous Lyme journey, to help answer the question of why I’ve had to go through all this, and to show myself that, in fact, it’s probably, (hopefully) a blessing in disguise.

What have I learnt on my Lyme journey during the past 10 years?

1. I have learnt that life can turn upside down and change dramatically in the space of a very short time.

2. I have learnt that one minute you can have everything, the next you have almost nothing. Of course I am more than grateful for a loving family, a home, quality food, necessities and material items; but without health, without being able to do anything, life, and things, feel like basically nothing.

3. I have learnt that friendship is more than often transitory. And I have learnt how to let this go.

4. I have learnt what pain really is. And that most people don’t understand it, but also that more people do than you think.

5. I have learnt the importance of being still and just thinking, or not thinking. Of dreaming and aspiring.

6. And the importance of action and seizing the moment to the best of your ability whenever possible, i.e. To always make the most of every moment when your health allows you to. To never hold back.

7. I have learnt that mostly, people know nothing, although they think they do. People are arrogant but ignorant, often well-meaning but half-hearted. They follow the crowd and can’t think outside the box. But then, occasionally there are those who stray from the crowd, make their own route and try to make the box bigger. I have learnt how to do this.

8. I have learnt how vastly different life is to every individual. I have learnt never to judge a book by its cover, and that what is going on on stage might look good, but backstage is often mayhem. And I have learnt how frustrating it is to be in this position/facade.

9. I have learnt that nobody understands… anything. Especially that no one can understand other peoples’ lives and situations. But they try, and pretend that they do, and think that they do, but it is impossible for anyone to properly understand another person. I have learnt what it’s like to be completely isolated and misunderstood, even by family.

10. I have learnt to place my trust cautiously, if ever, and that it is highly rare for people to keep promises; but that doesn’t stop them from handing them out freely.

11. I have learnt that not many people trust you, either. People are always sceptical, and always question you. If they can’t understand something, then it must not be true.

12. I have learnt that as soon as things get tough or uncomfortable, many people will abandon you.

13. I have learnt how to be alone. How to spend time with myself and no one else. And that I like it that way.

14. I have learnt what love is, and how to love with every part of my heart, but also that the more you love, the more it hurts.

15. I have learnt what grief is.

16. I have learnt what hope is, and what false hope is. And to not get my hopes up as easily as I once did.

17. I have learnt what it’s like to be taken advantage of in a vulnerable state, to be manipulated and abused, and how to make sure that never happens again.

18. I have learnt what it is like to have to face some of my deepest fears.

19. I have learnt what it is like to be crippled, not just with physical pain, but with mental pain. And to stop being able to function or sleep because of this. I have learnt what anxiety, OCD and PTSD is.

20. I have learnt what it is like to be faced with death.

21. I have learnt what it is like to wonder every night whether or not I’ll wake up the next morning, and to be 100% sure that I won’t, or hope that I won’t.

22. I have learnt what it is like to live with no friends except for a dark, cloudy monster who never leaves my side and who makes sure I never forget him and the pain he brings.

23. I have learnt what it is like to hate yourself, your body, so much, that you want more than anything for it to be gone.

24. I have learnt what it is like to live in the dark, to live in a cage, to live in mud. And I have learnt what it is like to wish that I didn’t live and to try not to.

25. But I have also learnt what it is like to have to fight with every part of me to live, and to make sure that my life is a great one. Because having your life taken away from you makes you appreciate it even more.

26. I have learnt how to be strong, and to not be afraid of what might be around the bend, because I am used to being unpleasantly surprised, and let down. I have learnt how to keep going despite what seem to be the toughest, most impossible and painful of times.

27. I have learnt how to be patient, and that good things take time (well, I’m still waiting).

28. I have learnt that it is a good thing being “weird”, or at least different and unique, because anything else is boring and you won’t make a difference if you’re not different yourself.

29. Most of all, I have learnt all about health, nutrition, and the importance of it. I have learnt about the body, my body, and how to nourish and protect it. I have learnt my purpose, and that I need to go down this route in life, to help people, animals and the world in the long run.

30. I have learnt that every flower must grow through dirt. That I have to go through this long and painful journey to learn all these things, to become who I am today with the values and ambitions that I have. And so that I can utilise them in life and reach my dreams, goals and utmost potential. I am not going through all of this for nothing, it’s a blessing in disguise.

31. I have learnt never again to take health, or life, for granted. I have learned how to live, and how I want to live.

And that is only the beginning of all the things I’ve learnt, and that I can put into words. A lot of it is purely on another level. So thank you to the tick from that birthday party in Mosman back in 2008 who has taught me all these things. You were the most unexpected, traumatic thing to happen to me, you very almost killed me and I often think you still might; but I have learnt more through illness than I ever would have otherwise, and crazily enough, I don’t think I’d change it.

So now I continue to take each day as it comes, one step at a time, with comfort in the knowledge and experience that I have attained to get me through.

Francesca xx

On my Nerves (poem)

I’ve been working on a major blog post for an excessively long time now, and because my brain just hasn’t wanted to participate with me, in the meantime, I’m going to post something short that I wrote a couple of months ago.

Poetry has the ability of portraying feelings to a much higher degree than just words placed normally side by side; so here is an attempt at expressing a situation and the feelings involved in a slightly different way to my other blog posts.

I wrote it on a day when I could hardly move (sometimes not at all) except for those involuntary tremors and spasms, and was so weak and in so much pain and discomfort that I couldn’t get up. I couldn’t do anything, and was finding it hard to speak, but I felt a desire to express how I felt in some way. So although both my muscles and my brain felt like mush, somehow this poem emerged through the fog and pain. It conveys at least ten different debilitating symptoms, especially those of having such extensive nerve damage (as a result of chronic Lyme and co-infections) that affect me on a daily basis, some days worse than others.

 

On my Nerves

Muscles turn to mush,

I can’t hold myself up

Drag myself to bed,

Lose all sense of touch

 

Spinning head inside,

Everywhere in spasms

Try to speak but can’t,

Paralysed, I cry

 

Chest cramps and heart pounds,

Spears splintering my bones

Numb now and stung next,

Aches and pains are loud

 

Twitching, shaking, jerks,

Internal tremors, burns

Frozen to the spot,

2008 bite still lurks.

 

Francesca Wallis

 

Yes, unfortunately it’s now been a decade and that dreaded “2008 bite still lurks”.

Keep an eye out for my upcoming blog post, where I’ll explain how things have been since my treatment in Germany, and how things are now, detailing my current treatment program for those interested (it’s complicated, so bear with me).

 

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Yes, we’re faking it. But not how you think.

Most people reading this will know that the issue of Lyme Disease is a controversial topic at best. So without going into it in great detail, in essence, it still isn’t properly recognised in Australia and other areas worldwide. Although circumstances are very slowly improving, most doctors will still scoff at a mere whiff of Lyme, probably threaten a mental institution at you if you dare mention the possibility of it, mock you contemptuously and downright tell you that you’re faking your illness. HUAC threatened the reputations and livelihoods of anyone suspected of having Communist ties by blacklisting them. I mean, the health authorities threaten the reputations and livelihoods of any doctors caught with ties to Lyme treatment by potentially stripping them of their license. So although most doctors don’t believe Lyme exists in Australia, if they do, they are paranoid and frightened into conformity, leaving patients at a dead loss. Lives are at stake and we’re told we’re faking it. And yes, we are faking, but not in the way that we have been accused of. Having never left the country and still been tested positive for Lyme, tens of thousands of people are living proof that Lyme exists in Australia. The irony is, we’re often told we’re “faking our illness for attention” and are accused of being hypochondriacs, I know I have been, and yet the part of all this that we are “faking” shows that we are exactly the opposite of that. Like many people, we fake our ‘fine’ exterior, when inside is turmoil. I know I am speaking for myself and many others when I say we do not want to draw attention to the fact that we are sick, obviously. As we have spent so long being sick and have been isolated because of it, the last thing we want to be known as is “the sick person.” Also, sometimes when we pretend to be well and fine and everyone thinks we are, we can start to believe it ourselves, and that’s pretty nice to pretend. So yes, when we’re in the public eye, we’re ‘fakers’. But because of the invisible nature of the disease, it’s very difficult not to hide it.

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A diagram I made a few years ago outlining some of the issues that go on inside a normal-looking body

When people ask how I actually feel, it’s hard to answer properly because there is so, so much going on inside the body that is impossible to describe. So on the spot, it’s quick and easy to just mention the general basics of pain, exhaustion, and perhaps head fog or one of the diverse mental difficulties. But that is not even the tip of the iceberg, and people are often left thinking, “well that doesn’t sound too bad, everyone gets that sometimes.” So in this space where I can think and write freely, let me help fill in those curious minds, using my experience, and take you through an average day of mine.

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Let’s start with the evenings, when I don’t get to sleep until between 2-5am no matter how exhausted I am or how impossible it is for my eyes to stay open. This is because I am crushed with debilitating depression, jarred with paralysing anxiety, nauseous and thick with inflammation and overcome with intense pressure and pain in my head. My legs go numb when I lie down, except for the dull constant pain and agonising throbs in the joints, bones, muscles, pelvis and gut, and spritzing nerve pains from head to toe. Next thing I feel the slaughterer surround me in the dark as knives and ice-picks are suddenly thrusted and pierced through my head and speared through my torso and/or limbs, depending on the night. If I wasn’t used to this slayer who violently stabs and hammers my head and body with such sudden searing pain each day and night, I would be afraid that he was really physically there. It feels so realistic that in the dark, it’s hard to tell. Each night I just long to escape the nightmare of reality into a state of sleep.

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In the morning, if I’m not woken, I will continue sleeping well into the day. But usually one of my cats will continuously knock ping pong balls onto my door to wake me up… This can go on for hours. So between 11-12pm, even though I feel like I’ve run a marathon in my sleep, I’ll occasionally awake with a smile, reminded that it’s these little things in life that can have the power to bring so much joy.

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It’s the little things in life that can bring so much joy.

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I’ll spare the details, but in a nutshell, my days are slow. Especially the beginning of my days, unless I have a medical appointment to get to, in which case it’s even harder. Depending on the day, it can take me up to at least six hours to get to my desk, force myself to sit upright and attempt concentration on a small amount of schoolwork. It’s not that I’m not motivated, because I love learning, strive to excel in every way possible, and enjoy the satisfaction gained in even the smallest amount of work done. But apart from the fact that I can’t read properly, my hands tremor and the small joints are arthritic, each day is not only a battle through constant pain and discomfort, but also through extreme shrouds of fog and confusion. I spend a vast amount of my day shovelling medicines and supplements down my gullet before, during, after and in between meals, just hoping that they’re making a difference, and by the time I’ve finished breakfast it’s a normal person’s afternoon tea or lunch time. I come away thick, bloated, and even more exhausted than when I first woke up, and just want to go back to bed but know that I can’t because there is so much to do, yet I can’t do it. So I just rest, feeling like I need liposuction for the fog and detritus in my head and the uncomfortable inflammation and pain in the rest of my body… And then stress about the things that need to be done but aren’t. On the rare occasion that I’m out for something that isn’t a medical appointment, I wear make-up, smile, and act. I fake big time, as I think we all do to a certain extent. In saying that, I am of course myself, but I just act a happy, far less sick version of myself. That all takes a lot of extra energy, so by the time I get home I am wrecked, not just for the rest of that day, but for the subsequent ones. Not many healthy people can understand the effort it takes for the chronically ill to get out of bed and get ‘ready’ (if they can even get that far); for that can be difficult sometimes for the best of us. But then to actually leave the house and attempt an occasion out, all with an exhausting facade is another story altogether. I am lucky enough to have parents to take me to appointments, but even then, just sitting in the car is draining.

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When I’m out, you won’t be able to tell that as I walk, it feels like I’m walking on sharp nails that dig their way through the soles of my slashed feet and up into my ankles. Or that the aforementioned slaughterer is by my side impaling me through the head and body; or that the parts of me that aren’t being stabbed are generally just in a constant ache; or that my insides feel like they’re in spasms, or that I feel lethargic and grossly inflamed and uncomfortable; or that I am lightheaded and dizzy with nauseating anxiety; or that I am struggling to differentiate between whether I’m in reality or a dream because that is how off-puttingly foggy my head is. Or that aside from the slayer, there is another familiar dark figure by my side and forever on my shoulder that so many of us have and will be able to relate to the fact that it never seems to leave. Weighing me down even further, along with everything else, he will make his presence felt much more fiercely upon my return home.

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There is always so much doubt and skepticism in people’s mind. They are confused because nothing appears to be wrong, so that automatically tells them that nothing is (and we therefore must be faking or at least exaggerating), no matter how well we know each other. People often require analogies, ratings, percentages, ratios, etc. to try and understand or assess the severity of the situation instead of just trusting you and taking you at face value. For example, I once had an unconvinced (though well-meaning) friend demand, “give me a percentage of doctors who treated you that way so that I can gauge just how bad this really is.” Just saying that it happened, and with the majority, was not good enough. (In my opinion, if even just one doctor arrogantly dismisses you telling you that you’re faking for attention and denying you any sort of treatment, is bad enough, let alone the majority of them doing that). No one can take your word for it; no one can believe that things are really that bad when they weren’t there, or can’t see it. So basically, you’re isolated in your own painful little murky world, faking that everything is fine but being accused of faking the opposite.

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You’re isolated in your own painful… world, faking that everything is fine but being accused of faking the opposite.

Sometimes it can be hard when we live in a world full of people who (consciously and/or subconsciously) judge each other, to not care, no matter what the issue is. It’s tempting to just hide away from everyone and everything because it seems that no matter how hard you try, unless someone has been through similar circumstances, understanding is ultimately impossible, and you’ll always be isolated so you may as well not bother. And yes, we are here to live our own lives, not to make everyone understand, but increasing awareness of situations that many people aren’t informed about, yet that far too many people suffer from, is the key to a more integrated, unprejudiced, tolerant and conscious society.

This article still hasn’t even reached past the tip of the iceberg, but I hope it has at least shown that the symptoms of Lyme extend far beyond just pain and “being tired”. Although I aim to raise awareness and understanding for invisible chronic illness like Lyme, ultimately, you’ve got to tell yourself time and time again that not everyone will understand your journey, and that’s okay. Because it’s not their journey to make sense of, it’s yours.

Much love xx

Side note: Please don’t misinterpret this entry to be a sad sob story or anything along those lines, because as I always say, the last thing in the world I (and other chronically ill people) want is pity. We are not victims, we are fighters. And we are also just normal people, not aliens. I just aim to open people up a little more to have even the smallest skerrik of a glimpse into our world and in doing so hopefully help spread some awareness for all of us. For now, that’s all I can do from my limited capacity at home. But I know how lucky I am. Yes, each day is a battle, but I have everything I could possibly ask for except for fit health, and that is a huge amount more than many others have. I also know, that in the long term, this experience will serve me well, which makes me feel even less disadvantaged.

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Not everyone will understand your journey, and that’s okay. It’s not their journey to make sense of, it’s yours 😉

My appreciation for living, and for almost not

One of the most significant and meaningful moments of my life was when I thought, without a doubt, that it was the end.

I have experienced innumerable moments throughout the past nine years where I thought for sure that it was the end. Countless nights I have gone to bed certain that I wasn’t going to wake up in the morning; and after experiencing that intense feeling time after time, although you’re scared, you find a way to make peace with death. Often, albeit petrified, death is all I long for. In those moments, it is my strongest need and desire to escape the overwhelming, crippling pain that resonates acutely throughout my entire being. However, although I sometimes think each forced gasp of air will be my last, I have always woken up in the morning, and for that I must be thankful.

It may sound strange but I guess I could say that pain is my pesky friend, or rather a sort of limpet that I have had to learn to live with throughout each day for the past nine years. Without constant pain, whether dull or profound and irrepressibly acute, I think I would be somewhat lost. It would be a very strange and shocking thing for me to be without it, but also the most freeing sensation I could imagine. Of course I have learnt to live with it and adapted my life around it, but I look forward to the day I will be free of its incessant restricting weight. (Obviously everyone experiences pain, and to differing degrees, but if anyone is reading this who perhaps only experiences it a couple of times a week as opposed to throughout every day, I would love to take this chance to please remind you never to take a break from pain for granted, and to realise all the things you are capable of!) Only once you are held back do you realise what you could be capable of achieving if you were equipped with what so many people take for granted. I am also aware that I take many things for granted, too, including the health that although is greatly compromised, could be vastly worse.

When you live through a constant storm, you learn to make the absolute most of any small, temporary break of rain or patch of sun, and all you can hope for is that those rare breaks from rain or patches of sun will become more recurrent or perhaps last for even a second longer at a time.

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This brings me to that quite significant and meaningful moment of facing what I thought to be death. It was after my first hyperthermia procedure during my treatment in Germany, of which there are no words in my vocabulary capable of describing the excessively harsh aftereffects. Everyone responds to the hyperthermia treatment differently, and of course you’re asleep for the duration of it, but most people who have been through it will know how wretched the consequent days are. Of course the body is desperately trying to figure out how to cope with having been baked right through to the core – brain and all. It is not legal to reach the temperatures they do in Germany in Australia, but those high temperatures are the most effective, if not the only, way of getting results, which is what sets it apart from any other hyperthermia treatment elsewhere. When I woke up after my first procedure I couldn’t see, and I couldn’t move as a result of both the excruciating pain and also due to the fact I was still coming to, which took a while. After a recovery day in bed, I still needed a wheelchair to get around to my other treatments during the consequent days.

Because I had been stuck inside the hospital walls for days, mum took me outside and wheeled me to the park down a little street. I didn’t think I could do it, and it was the hardest thing sitting up in the wheelchair, but I’m glad she encouraged me to do it despite my reservations. One of the reasons I was hesitant to go out, even if for only ten minutes, was because I was crippled with severely intense pain and was a little afraid to be away from the hospital when I finally passed, which I was certain was about to happen. The pain resonating deeply throughout my body was indescribable, but it’s during times like my experience in Germany that I have found one involuntarily removes oneself from reality somewhat; subconsciously becoming only partly conscious. During these times, you become so highly detached, which seems like an instinctive response so as to protect oneself from the distress of reality, to preserve any sanity. I have found it to be the same with grief. It is obscure, no longer seeming like reality at all. The senses are numbed, and looking back, it could almost be a strange dream, or more a nightmare. (The difficulty with this is you don’t know how to cope when you return to more normal circumstances and always expect something to go wrong, which it did upon my return, but I was equipped for it). However, it was through this innate coping mechanism of the body that I managed to be okay with the prospect of death. As I say, I have experienced this many times before, as I would presume probably everyone has. But this time was different. The conscious part of me was anxious and frightened, but that conscious part seemed such a small portion of my being, that all I could do was be calm and accept that this was where my life ended, even if I didn’t want it to. I felt okay with that, I just wasn’t so okay with leaving mum. She wheeled me down to a large duck pond in the park that was frozen over, but slowly melting. I was wrapped up and warm, but I could feel my body shutting down. I was too weak to not be calm. I was in such debilitating pain and discomfort that I wasn’t scared of ending it, I was with mum and I was looking out upon serene nature. It was there that I truly made peace with death.

So many people deeply repress the thought of death in an attempt to make it an unconscious thought and escape it. But accepting, if not embracing it, frees our souls, allowing us to live a beautiful, vastly fulfilling, life.

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I didn’t die that day, or any of the other times, and I feel like that’s a miracle. I am lucky to be alive, and I honestly don’t think I would be if it wasn’t for my treatment in Germany. Being so close to death, shows you life. It shows you meaning, intense love, forgiveness, appreciation, and what a waste of time resentment, hatred, and holding back are. In the right circumstances, approaching death can be a significantly valuable experience, as nothing puts things into perspective more and makes your life and those around you more cherished, leading to a much deeper and more fulfilling existence. I know what I want to and will achieve in life. I know what’s important to me, I know the importance of every second, and I will never waste a minute reaching those things to my potential. And once I get there, I will never take anything for granted. Just like extreme pain has shown me the value of any pain-free moment that I look forward to one day, this experience in particular has shown me the precious value of life. I am not afraid of death or suffering. I feel equipped for anything that comes my way, and with that, I can move forward. Once again, as chronic illness has the habit of doing, the darkness has shown me the light.

 

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Invisible chronic illness – a guide to understanding what not to say

In my last post, I wrote about how to talk to/help people suffering from depression if you don’t know how to act around them, but I feel I need to write one about physical invisible chronic illness.

camera3 212.jpgWhen I first got sick, I became someone who none of my peers could relate to. I was misunderstood, and therefore people didn’t know how to act around me. I was like an alien, and so everyone drifted away.

Of course no one can understand perfectly anyone else’s situation and circumstances because, well, obviously everyone lives their own lives and deals with their own individual thoughts and problems. Even to those closest to us, we cannot know exactly what is going on behind the scenes. Therefore, of course it can be difficult to know the right thing to say to someone, especially when they are going through something that you, while although having issues of your own, have never endured and cannot understand fully.

It doesn’t have to be difficult or complicated to know how to act around a sick person. We’re people too. You don’t have to say anything in particular or play a part or anything, just be normal. There are however some things that are probably best left unsaid (differing from person to person of course), but to make things hopefully slightly easier, here’s what I have to say on the issue.

Starting with understanding: I have sometimes had people tell me that they understand my situation and what I am going through; that, “they know how I feel”. Occasionally yes, if that person has suffered from an invisible, unrecognised, debilitating chronic illness like Lyme Disease, we will have a lot in common and feel we understand each other because we have had similar experiences. However, obviously no one journey is the same, and so there are still aspects where all we can do is try to understand.

However, the people who tell me that they understand me and what I am going through who haven’t suffered (or taken care of a sufferer) from an invisible, unrecognised, chronic illness like Lyme are lying, even if they don’t realise it. It is impossible. You cannot say you know how someone with a chronic illness feels because you “had the flu/a headache last week and it was awful.” I just find it hilariously astounding that those sorts of conditions could even be vaguely compared. Lyme and the resulting complications are unique and intensely complex, and if you have not been through it, there is absolutely no chance in the world that you can possibly even begin to understand what is involved. You might say, “well tell me then, explain.” But the truth is that it is impossible and far too complicated to explain properly. And everyone’s experience with it differs. It is not just the constant debilitating symptoms that affect every cell in the body, it’s the endless medications and supplements to keep on top of, the confusing and painful treatments and appointments, the mental issues, the expenses, the stigma, the ignorant doctors, the misunderstanding, the fact that one day we might be out, the next we can’t even walk, the social aspects, the career, study, relationship and family consequences, other health ramifications from treatments, untreatable co-infections, prolonged aftermath, and so much more. It is an endless, complicated rollercoaster with lots of bumps and where you actually sometimes long for the cart to release and fall, just to get out, but we have to keep going around in painful circles. The fact still stands that you cannot understand it unless you have endured it. I am by no means saying that this is totally unique to Lyme, because you can’t understand most things fully unless you have experienced them first-hand, but what I am saying is to just accept the fact that you can’t understand it, instead of pretending, or thinking you do. It’s no one’s fault, just the simple fact that no one can understand perfectly any one else, Lyme or not. So there’s number one, while it might feel like something comforting to say, and we definitely appreciate that it is coming from a good place, if you haven’t been through the same experience, you cannot know what it is like. You do not and cannot know how we feel. So just support the person and be there for them, make sure you acknowledge what they are going through and try to understand as best you can, but you don’t have to understand fully, and you can’t. Just don’t pretend you do, because if you think you can know what they are going through, it just shows that you have even less understanding than they thought.

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…and that’s not even the half of it

Moving on to misunderstanding: NEVER say, “well everyone goes through that to a point, it’s just a part of life.” This is one of the biggest no-no’s. Much like with depression, don’t even go there. With depression, I think it is mainly the confusion people somehow seem to find between ‘sadness’ or even a prolonged melancholic state of mind (which yes, everyone will most likely experience in the complex ups and downs of life), and actual ‘depression’. With chronic illness, I don’t know. Yes, everyone feels unwell sometimes, but having a headache or a stomachache or a cold or the flu, or feeling tired, or a pain here or there, is remarkably incomparable to chronic illness. These things are not even remotely in the same category. They just aren’t. This sort of expression, that “everyone goes through what you are”, although perhaps sometimes aimed to help make the person feel less badly off or alone (?), just makes the sufferer feel bad or guilty for actually saying something about their circumstances, as if we’re complaining about nothing. Which we are most definitely not. I know I for one never feel sorry for myself, so don’t act as if I am. It is hard to open up to people even a little bit, so chances are we’ll never open up to you again if you treat us like this, if we even had the chance in the first place. Never dismiss what we have to say as if it’s nothing, because it isn’t, and it doesn’t make something go away if you don’t talk about it, it just makes it worse. This brings me to my next point, acknowledgement.

Feeling acknowledged, or not: The thing with Lyme in particular is that, in Australia anyway, it isn’t acknowledged. So the worst thing you can do in this case is to not acknowledge what sufferers are going through. It makes it really hard when you don’t look sick to be properly acknowledged, and this leads to even more feelings of isolation and misunderstanding. Most Lyme fighters have already had to endure the battle of recognition and acknowledgement from doctors, the government and even family, that the last thing we need is to not feel acknowledged again. We sometimes want/need to be able to talk about our illness and treatment with our friends. It is a significant part of our lives, and so to avoid conversation about our illness is similar to avoiding subjects fundamental to who we are. We never want pity or sorrow, just validation and recognition that we actually are battling through a really, really tough time and that it is not all in our heads! Don’t down-play what we have to say. No matter how small or big (we can’t share everything, chronic illness is too complicated), it’s simple, really. Just listen, and accept. Acknowledgement  doesn’t involve sympathy. Making an effort to understand as best you can means the most.

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Problem-solver: Don’t feel as though you have to solve our problems, or even offer advice. Sure it’s mostly well-meant (unless you’re advising us to just get over it and carry on), and anything well-meant is definitely appreciated, but unless you’re a doctor or practitioner whose job it actually is (although they still can’t seem to do it), it’s not your responsibility or worry. There is no quick fix, if there was, we would be better. It’s probably best to just presume that because we are the ones actually going through it, we know the most about it. That might sound a bit unappreciative or arrogant, but trust me, people like us at this stage have probably tried almost everything, from the most conventional to the most unconventional you can think of. We have taken desperate measures in order to just be able to do something or function in a way that most people take for granted. Having said that, we’re always open to new ideas, just as long as it’s not suggesting a supplement that a lot of people take anyway, telling us that we’re making a fuss out of nothing and that we really should get on with life, or “get out more”, or thrusting a leaflet on why Lyme doesn’t exist in this country into our hands (yes, that really did happen).

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(#14)

Comparisons: No one likes comparisons. No two people are the same, no two diseases are the same. Never compare our illnesses to other illnesses like saying, “well at least it’s not cancer,” or even, “at least you’re not a starving child in a Third World country.” Everyone experiences hardships in life and each one is valid for the individual. Saying you should be grateful that you’re not as badly off as someone else is like saying you shouldn’t be happy because someone else is possibly more happy. No one would say that. There are always things to be grateful for, and there will always be someone enduring more difficult circumstances, but just because someone else might be going through something worse, doesn’t make what the other person is going through fine or easy in any way.

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“You don’t look sick”: I’ve saved the best until last… any fellow invisible chronic illness sufferer will agree I’m sure! This is probably the most common issue we face, not looking sick and therefore being misunderstood, because people just don’t seem to have the imagination to realise that just because we don’t necessarily look sick, doesn’t mean we aren’t! As with other comments, we have to try and focus on the good intentions behind them, rather than the intense frustration, but that is hard. Lyme sufferers especially are so used to not being believed about their illness, so this just adds to our paranoia on the issue. Being told that we look fine, tells us that the other person doesn’t think we look sick enough to actually be sick, doubting us. Skepticism of our condition is the worst possible thing you can portray. People don’t realise the constant, intense battle that we are constantly fighting inside. We may not look it, but beneath the smile is a realm of severe pain on every level. We’re just professionals at hiding it.
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So there is a start, anyway. I hope it helps to some degree, even to help chronic illness warriors feel that they are not alone in at least some of their problems! I know it can be hard for people who don’t understand our circumstances to know the right thing to say, and we have to remember that the vast majority of the time, these comments are always said with loving intentions. People just want to help and they don’t know how. Doctors don’t seem to be able to, so how can normal people? It can be difficult, but as long as we all do our best to love and support each other, make an effort to try our best to understand within reason, acknowledge and recognise each other’s struggles without pity or making their problems feel inferior or worthless, listen and accept each other without feeling we have to fix their problems, don’t make comparisons and try to avoid ignorant, thoughtless comments as much as possible, everything should be at least little better.

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To the people who just want to try and help – thank you, your effort and genuine compassion never goes unappreciated. And to all the fellow chronic illness warriors – keep fighting, everyone has slightly different circumstances, but no one is completely alone in this, although it definitely feels that way often.

Much love beautiful people xx

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“…beneath the smile is a realm of severe pain…we’re just professionals at hiding it.”