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

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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.

 

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.”

Depression. Let’s talk about it.

I am not going to pretend that depression is an easy subject to discuss; it’s not. However, it is definitely a crucial one.

Understandably, so many people don’t know how to act when someone they know or love is suffering from depression. So many sufferers don’t know how to talk about it either. It’s hard because while we need help, we don’t want to burden others with our negative thoughts, and we definitely don’t want pity. Countless times when I have felt suicidal and have desperately needed to talk to a friend, I haven’t been able to bring myself to because I don’t want to make them feel uncomfortable, and I don’t want to be thought of like that. I also don’t want to freak them out and make them run, never to hear from them again, because that has happened many times before. It is definitely difficult to know how to act and what to say to someone when they’re suffering, so I have compiled a sort of “list” of do’s and don’t’s that could hopefully be helpful in these situations.

First and foremost: This should be obvious, but depression is remarkably different to just feeling miserable. Many people don’t understand this. Everyone gets sad and miserable a lot of the time, but depression is a mental condition where it seems impossible to escape a constant black hole of darkness, hopelessness and isolation that saps the life, motivation and energy out of you. You are in a severe state of dejection and can feel worthless, defeated and misunderstood. But at the same time you can force yourself to look behave happily on the outside. Depression of course differs from person to person, but for me, it feels like I am trapped underwater struggling for air, only I don’t know if it’s worth the struggle. Although the severity of depression fluctuates, its dark presence is always there, tapping on your shoulder as a constant reminder, and pouncing viciously in the slightest moment of weakness. It’s not like sadness in that one situation or comment might make you sad for a day or two but then you’re okay. There has not been one day that has passed for me in the past few years where I haven’t thought about suicide. It doesn’t mean that you’re not happy sometimes, but the fact is, depression is a constant, debilitating state of mind. I have to mention this because one of the worst things you can say to someone who is depressed is, “Oh, but everyone gets depressed,”  as if it’s no big deal and they’re making a fuss out of nothing, something that everyone experiences. Yes, unfortunately depression is drastically common, but this comment just shows how little that person understands. Also, while most people probably do suffer from depression at some point in their life, the severity varies. You cannot just put the term “depression” into one box for everyone.

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Make sure they know you’re there for them if they want to talk, but only when they’re ready. Give them opportunities to talk about it, because it is difficult for them to bring it up themselves. However, treat them normally (don’t tread on ice around them), and don’t pressure them. Just check in on them every now and then, making sure they know you care. You don’t have to say anything in particular, just as long as they know you’re there.

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Suicide can be more difficult. It can be quite confronting to try and support people dealing with suicidal thoughts, and you also really need to make sure that you’re okay and are coping too. However, as a start, probably one of the worst things you can say to someone feeling suicidal is to make them out to be selfish for “not thinking about the effects it would have on loved ones”. The truth is, to get to the point of considering suicide, you can actually genuinely believe that you are doing what is right for the people around you, that they would truly be better off without you. In some cases, people believe it is not so much for them as it is for their loved ones. Being “selfish” can be the last thing these people are because all they think about is those around them and how they are affecting them. Instead, you can assure them how upsetting it would be without them, and show how much they mean to you. Once again, all you have to do is just be there for them and show you care.

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Now, regarding self-harm. It’s difficult because so many people just cannot for the life of them understand why one would hurt and scar their body. Obviously not everyone with depression does engage in self-harm, but I would like to attempt to help people understand a little more about it before they start judging. Seeing as I’m trying to encourage people to be more open about talking about depression, I will try to lead by example and admit I have a ladder of painful red scars up my thigh that I am not proud of. I feel embarrassed and guilty, and I try and cover them and make up excuses like they’re cat scratches, or even, when I was on the spot once, that they were from playing ping pong..? However, I find it relieves tension from the overflow of fierce chaos in the head, and also comes from a place of intense anger and self-hatred and worthlessness. I would never normally say this, and definitely not write it up and share on the internet, but I am sure there are people out there who can relate to that. (You’re not alone). Now I come to what not to say to someone self-harming, from experience. Before anything, I want to firmly make clear that self-harm is not about wanting pity or asking for attention. I have been told to suck it up. Told that it was babyish and if that was how I had to deal with life there must definitely be something wrong with me. Told that I was just trying to seek attention. Take this as a list of things not to say. Of course it may be distressing to see that someone you care about is self-harming, and it’s hard to know how to react, but one thing for certain is that anger is definitely not the answer.

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Even if you try and start a conversation with someone who you think is depressed and they become aggressive or retreat and deny it, you can be 100% sure that they appreciate what you did. That you were willing to have what many think to be an uncomfortable discussion means a great deal. If they know you are there and let them know you are there if they need to talk, it is a huge help. My cousin recently caught sight of my scars on the beach, and asked what I had done. A huge wave of panic rushed through my body as I searched for excuses and said I was fine. I wasn’t ready to talk then, I couldn’t think of anything worse, but she made it clear that she was there if I needed to, and that was all that mattered. No one has ever been that open about it to me, and it made me realise how much just a few words can make a difference. Sometimes people understand more than you can know.

As hard as depression and other mental illness is to talk about, it is crucial to be able to try and be more open about it and not shy away from the issue out of discomfort or awkwardness. I can’t promise I can do it, but this is my first step to trying and I hope you can try too.

If you’re struggling and don’t feel like talking to an organisation like Beyond Blue (1300 22 4636) or Lifeline (13 11 14), I am here to reach out to.

Take care of your beautiful selves xx

If chronic illness is one thing, it’s depressing

This entry was difficult for me to write and has taken me a little while to decide to share, but I feel it needed to be done.

I think it is incredibly common for people with chronic illness to suffer from depression. I mean, if chronic illness is one thing, it’s depressing. So you would think we wouldn’t feel alone. However, chronically ill people are mostly too sick to go out, so how are we going to engage with and meet other people in similar circumstances, when we’re all just at home feeling unwell? Depression doesn’t really make you feel like doing that anyway, physically chronically ill or not.

I hope this is something to relate to for some sufferers, to know you’re not alone, even if it may constantly feel like it.

Depression often isn’t thought of as an illness, but just a state of mind, or a feeling. I’m sure that people who have suffered serious depression know that this isn’t true. It’s much more than that, and engulfs everything in a vast, thick, dark fog that you just cannot seem to get out of, even though it’s invisible. It’s sticky, and follows you everywhere. Sometimes it clears a little, but it is always there, even if just a vague mask.
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It’s a very scary thing to have to deal with. For me, I find it’s almost like a strong dark force like Darth Vader is trying to pull me to the dark side, or something. But there’s this little voice at the back of my head saying, “Be strong, don’t do it, don’t go to that even darker, dangerous place.” But the force is so strong that the little voice gets weaker. It’s hard to explain, but it feels uncontrollable. That’s why it’s so scary. Then sometimes you think that the ‘dark force’ has given up trying to pull you into that black hole that is almost inescapable – that void. But it always lingers, ready to pounce at a moment of weakness.

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There is not one single day that passes where I don’t have suicidal thoughts. Therefore, for me, each day is an accomplishment because even if I did nothing but feel sick, I breathed and kept breathing. All you can do is smile and pretend everything is ok. I have attempted before, and later thought I don’t want any regrets. I also need to remember that it might end my pain, but could start a whole world of pain for my mum, even if in some ways I think she would be better off without me. Yesterday when I found myself thinking those awful, debilitating thoughts, and thinking again about the simplest plan to end the pain for good, that little voice reminded me that I haven’t had my chance in the world yet, and not to give up before I have. It is the most difficult thing to do, but in those moments you have to try and force yourself to look ahead and try your best to see the future you want, imagining that it is possible for it to come true. Yesterday I started thinking about how I want to help people and animals, and have a family. I imagined myself thinking in the future, “I am so glad I didn’t give up then, I would have missed out on these beautiful people and moments.” It is anything but easy to do that during those moments, and for me, this pain seems never ending, like I’m stuck in mud. But I’ve been told that although I walked into a thick, dark forest, I need to find my way out into the light. It’s like a maze and is 100 times easier said than done, but I try every day. I need to get physically better first so that I am up to walking all that distance, though!

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I know that it is hard for some people to understand, and maybe easy for others, but hurting oneself feels like an outlet. Something that can be done, without going the whole way. It seems to release that excruciating, intense build-up of emotion and tension, or anger or hatred inside the head that would otherwise explode. However, it hurts afterwards too, and leaves scars. I know I don’t need that extra pain. It is like living in a body that is trying its best to survive, with a self-destructing mind. It’s easy to turn on yourself when you have no one to turn to. But I want people to know that it is not their fault; and your body, and even your mind, is trying its best. Instead, I’ve been told to punch a pillow, get the build-up inside your head out like that. It’s worth a try, but I don’t generally have the energy for that. Someone else had the good idea of drawing something like a butterfly or your favourite animal or pet (like a cat) on the area one harms so that you don’t want to hurt it. Another idea is to just let loose on a piece of paper. See what comes out, with no critic or control. I find my paper just fills with scribbles! It’s hard in the moment to think of these things, but I hope that something can be helpful for sufferers, or for friends of sufferers to pass on.

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When I first became sick with Lyme Disease, my friends gradually floated away, and as I was stuck at home in bed all day every day, I didn’t have that peer group, that social contact. Over the years, a few friends came and went as I managed to later float in and out of school. However most of my schooling from year 4 has been through Distance Education, if any at all, and as the years progress, the isolation grows stronger. I found that the moments I needed friends the most, were the moments that they were the most vacant. A few friends I thought were close, clean disappeared during my darkest times, when I had been there through my suffering for them, and would have continued to be there for them no matter what. But I guess these experiences determine who exactly are your friends and who are not.

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“I need to find my way out into the light.”

 

As I am typing this, I can hear a man outside, walking up the side path in the wet, happily singing loudly. He does this frequently.

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That is how I want to live life, happily, doing the things I love without a care in the world, and not caring about what anyone else thinks.

As I said, I hope that this can give people who suffer from depression with or without chronic illness something to make them know that they are not alone, or maybe some reasons to keep going or to help. Please reach out if anyone needs support.

Francesca xoxo

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