Author: indisposedandundiagnosed

The Place In Between.

I apologise for my absence, but I’m hoping you will take ten minutes out of your night to read my update.

I’ve been sitting here for weeks wondering what to write.
I have been dealing with grieving over the loss of my friend to suicide, and trying to put my puzzle pieces together. I have battled bad flareups, more testing and uncertainty. I have battled my Depression and Anxiety demons, and I have even managed to get a bit and actually enjoy the company of other humans my age.

When I first fell seriously ill in 2014, I watched my career crumble beneath my hands, my fat fading away to bones; I watched my hair become so dry that it fell out with the simplest touch, and I had a stomach that had lost its ability to break down food. I was left nauseated daily, dizzy daily, weakened, fatigued, insomnia ridden, depressed, confused, uncertain, terrified… the list goes on.

I think back to my thoughts then, and all I remember on a day-to-day basis was the certainty that I was going to die.

I knew it.
I could feel it.
I was just waiting for it to happen.

I was newly diagnosed with “mild” Gastroparesis that presented with “severe” symptoms.
I, nor my Specialists, had no control over my stomach.
Everything you name, we tried.
I had MULTIPLE MRIs, CTs, xrays, Colonscopies, Gastroscopies, Breath Testing, Emptying Scans, Bloodwork, a lumbar puncture, fasting tests, balance testing, hearing tests, faeces and urine samples, laparoscopies.
I had every home remedy, every detox supplement, every ‘green’ drink that supposedly changed the lives of so many. I tried EVERYTHING.
The condition ruled me.
It was killing me, and nobody could justify or manage it.

When you are sitting alone in your house, feeling exhausted from waking up every morning to battle your own body, you eventually accept that death is coming.
Each day is a struggle.
It isn’t like having one bad day.
A bad day in comparison to this is actually a great day.
The actual extent of the struggle is indescribable.

I wrote letters.
I wrote goodbye letters to everyone I could think of that filled my heart with warmth, because I knew that one day I wouldn’t wake up and I needed them to know that I tried as hard as I could.
I also remember sitting with my parents at the dining room table, crying, and telling them how much I wanted to die.
I saw how much devastation I unintentionally caused them. I remember my sister despising me because I was being given all of this attention. I remember my parents saying “we don’t know what do to do” repeatedly. They would be the first ones to question me, to take out their frustration on; but they would also be the first ones to defend me in public or to family and friends who chose to give their opinions.
I remember hearing them whisper about my frail body, and then look me in the eye with a halfhearted, sympathetic smile because they felt sorry for me and they didn’t know how to save me.
I remember sitting in waiting rooms with a vomit bag, and grown adults blatantly staring at me and whispering.
I remember how many friendships I lost due to their inability to accept me with this condition.
I remember the loneliness.

I was twenty-two.

It has been over two years since I was diagnosed with Shingles, and it has been just over a year since I was diagnosed with Gastroparesis and started this blog. It has taken me over a year of medication trials, hospital visits, endless tears, locking myself in my car and screaming until I have no voice, walking on the arm of someone else to stay upright, counting the hours until I fall asleep, memorising medications and test results, vomiting and eating, abdominal pain that left me in a ball on the floor… all of this to reach where I am now…

Where am I exactly?

Well, I’m not cured, and I’m not exactly making rapid progress.
I am somewhere in the middle.
I don’t know what that middle is called, but I hear that it could be something called Acceptance.
I am still attending appointments, but they have been cut down from daily, to fortnightly and some monthly.
I am still dizzy and unbalanced, but I’m somehow completing my daily exercise regime and I’m even jogging small distances independently now.
Yes, jogging!
I am still left bed or couch ridden on SOME days due to flareups, like today, but I can tolerate these “bad” days because I now know the difference.

And that’s the point that I want to make to you today…
If you are at the beginning of your health journey, or you have been sick for some years now, everything is going to be okay, I promise.
You have most likely faced the worst of your illness, and that was the beginning.

Believe it or not, you will grow accustomed to your body and the symptoms that accompany your medical condition. I’m not telling you that every day is easy, because it isn’t.

If you told me a year ago that I would still feel dizzy, but be able to jog around a park oval, I would have laughed in your face.
If you told me a year ago that I would have 7 days of good health in a row, I would shake my head in disbelief.
If you told me a year ago that I would be able to eat three meals a day, on most days, I would not believe you for a second.
If you sat me down a year ago and prepared me for all of the things that I would have to endure, and actually come out of it feeling relatively “well”, I would have burst into tears with absolute fear.
I look back on how underweight I was, how afraid and ill I was, and I see that I HAVE made progress, and you will too.

As time goes on, medicine is advancing and your illness is becoming more common. That means that there are more people in YOUR situation, feeling what you feel, seeing the Specialists that you see and they will most likely be trying everything they can to feel better.

I went through my journey expecting to make a full recovery. I could never accept the fact that life would be harder for me; I just thought it would be impossible and I had to make a full recovery in order to LIVE.
No, no, no.
I had it all wrong.
So, here I am speaking from experience.
I am here to tell you that you will most likely not make a full recovery, and you just have to accept that… but I want you to know that there is hope that you will make PROGRESS. There is hope that things will get better, that you will find the right code to your puzzle and be able to go to sleep with a smile. Things will get better, but it takes time.
I promise you will come out stronger at the end of it. You will be able to brave the bad patches with more strength than you’ve ever had before.

I also wanted to share a photo with you.
I am not looking for negative comments about my weight, or the fact that I am wearing minimal clothing. I am sharing a private piece of my life with you, to make a point.

I took the prephoto when I first fell ill. I was at a shocking weight of 33kg (72pounds) and had bones protruding from my ribs, my shoulder blades, my hip bones, cheekbones and knee caps. I was going through my day sipping on water and not eating. I had at least four nose bleeds a week, hair falling out and skin dry and scaly. People would stare at me and say “you look sickly thin”.


I currently weigh 47g (103pounds) and I tried to take an identically placed photo to show you.
I now aim for two to three meals a day (unless the nausea is really bad). If I do have a bad day I try to at least drink one smoothie. My hair has grown, and is strong enough to have been bleached about ten times already. I have fewer days of complete brain fog. My skin unfortunately still fluctuates with my stomach symptoms, but I am at a healthy weight. I have gone from being an Australian Size 4 (which isn’t actually made so I had to buy kids clothes and jumpers) to an Australian Size 8. I have gone from not fitting in my clothes, to being to big for them and having to upsize.
I have actually been referred to as “fat” now, and do you know what I do? I laugh.
Yes, I have a round stomach now, I have lovehandles, I have curves.
If this is fat, then I’ll wear it with pride, because I would rather be this weight and be able to eat, than be underweight and living off of sips of water.
I still feel “sick”, but nowhere near close to the sickening feeling I had a year ago.
I still have multiple severe symptom days and feel like life isn’t worth it, but I reassure myself that it will pass. It WILL pass.

In regards to my own journey, I still have a long way to go.
I would like my flareups to decrease to 1-2 days a week as opposed to an entire week sick and then one week not sick. I would like to be able to tolerate the dizziness better too.
I finally have a good team around me, supporting me, and some incredibly understanding family and friends.

I have been spending my spare time educating others through Facebook messenger and Instagram. I want to help others so they do not feel as alone as I did in the beginning of my journey.

Everything takes time.

So, please, if you are having a rough time, hang in there. Hold on.
Keep researching, keep trying new things, keep educating others.

I know that one day you will also look back with pride, and you will see how far you have actually come.

C xo

In Loving Memory.

*IMPORTANT POST*

It is through tears and sadness that I write this post tonight.

I received some devastating news, and have spent my past two days in a complete state of shock. I have gone to write this so many times, but I just don’t know what to say.

Back in Childcare, I became very close to a mother from Spain, as I taught her firstborn. She was my first friend at that centre, and her family became more like family to me.
When I fell ill in late 2014, she also fell ill to similar symptoms as I. I resigned, and we both spent time searching for answers and keeping in close contact. We forever spoke about how tough it was finding support for something that nobody understood, and how challenging it was to be told to “think positively” repeatedly when we were suffering in silence. We both understood each other on a level that not many others can relate to; a level that you would understand quite well if you too are ill. She gave her full support for this blog, and for that I am so thankful.

It has been close to two years since I last worked with her son, and saw her face-to-face. We spoke every few weeks and shared health, children and life updates, and I was only catching up on her photos with the children a few days ago, when I found out the horrible news.

I can’t even say it, because I don’t want to believe it.

I know that this message must be shared, but I wish every second that it was not with my friend as the example.

I find myself grieving for the loss of a friend, and grieving for a husband and two younger children who are without a wife and mother from this day forth.

I cannot stress the following enough:

Chronic Illness, whether mental, physical or combined, is an incredibly difficult journey. The uncertainty is terrifying, the tests are invasive, the symptoms are debilitating. It is a burden, it is lifechanging, it is exhausting, it is lonely, it is depressing…
But please, please don’t let it become a death sentence.
Do not let the overwhelming darkness of Chronic Illness kill you.

Your parents, your extended family, your children, your friends, your colleagues; I guarantee that one or more of these love you and care about your wellbeing.
I, a complete stranger, care about your wellbeing.
You might have mistaken their silence for being rude or uncaring, but they most likely have NO knowledge of your inner thoughts and pain. You must take the step to reach out. Reach out to anyone.
Please, do not battle in silence.
There are loved ones, Psychologists, Doctors and Counsellors who are here to listen to you, to help you.

In memory of my dear friend, I ask three simple things of you tonight:

1) Reach out to your loved ones tonight and simply, LOVE them.
Put aside all anger, all stress and just tell your loved ones how much they mean to you, please.

2) If you know of someone going through hardship, or haven’t spoken to someone in a while, I encourage you to reach out and ask them the simple question, “How are you?”
This simple sentence packs a powerful punch.
Mental health is real,
Suicide is real,
and with these three words, you might start the conversation that saves someone’s life

3) Please share this post in loving memory of my friend, and to spread awareness for those battling Suicidal Thoughts who might not think that they have a reason to live tonight –
You DO.

Finally, to my dear friend A,

I am having a hard time accepting that this is goodbye.
I still find myself going to message you. I want to speak to you just one last time.
I don’t want to believe that this is how our journey ends.
You were a unique soul and the most incredible mother to those beautiful boys. I mean that. You were an even better wife and a genuine, loving friend.

I am holding close to my heart all of the wonderful memories I shared with you and your family. I remember the day that we met, and knowing that our friendship would last a life time. I loved my job for children and families like yours.
I clearly remember cuddles with little one and nicknaming him a Koala-bear as he glued himself to my chest; I remember the Christmas Decorations you handmade me (which I still have on my tree each year); I remember becoming so sidetracked with chatting at work, that I’d think you were one of my colleagues as you’d be sitting with me and the children at story time; and I remember your complete support when I first fell ill.
You offered numerous times to care for me, and to have relaxing “girl” days at your house. You sent me photos of the children’s birthdays, because you knew how heartbroken I was about having to leave my dream job. When you referred to me as your son’s second Mum, I was overwhelmed at how close we had all become – that we were now family.

Each night, you would tell me about all of the wonderful adventures you had planned for the children at home; that you always kept them busy with cooking, decorating, creative activities. You were adventurous, accepting, and kind beyond words.
I was in awe of you.

I went home wishing that all parents loved like you and your husband did.
I wished that every child I would teach in the future, was like yours.

You were destined to be a nurse and mother. It was your natural instinct to care for others before yourself, and I wish you could have seen how great you would have been.

I feel absolutely sick to my stomach that we will never get to have that girl’s night that we planned for so long.
I hope you know how special you were to so many people.
I know in my heart that you were strong. This does not at all show any sign of weakness, or define you. I know that you were suffering, and for that, I am so sorry.
I can’t stop crying, A.
I hope that you are reading this somewhere, and know how much of an impact you made on my life. I know that you will continue to guide the little one’s on their path through life, and you have my word that I will be there for them too. I will remind them of how incredible you were.

We will meet again one day, and we will have that girl’s night we planned, I promise.

I hope you are painfree now, sweetheart.
You will be missed terribly, and loved always.

Until we meet again, Rest In Peace X

If you are, or you know of someone, dealing with Suicidal Thoughts, Depression or general hardship, please locate a Suicide Hotline or Chatsite in your given country of residence:
http://www.suicide.org/international-suicide-hotlines.html

 

Exercise for Chronic Pain.

You’ve heard it before. Surely one, or numerous Specialists, have recommended Exercise to help manage your Chronic Pain, Depression or Anxiety.

I received the all-clear from my Exercise Physiologist to start exercising again today.
We had an hour chat about all of my fears and goals. This was our second visit, out of the five that the Government give me for free.
After he told me to restart the regime, the expression on my face prompted his questioning.
I explained that I am excited to exercise, but am equally afraid.

There is a certain fear that accompanies being Chronically Ill and having to exercise.
I know that the non-Chronically Ill would just assume it is being “lazy”, but it is an actual fear.

We fear pushing ourselves too hard, and that we cause our symptoms to fluctuate for a few days following. By fluctuate, I mean fullforce pain, migraines, body aches, nausea and dizziness…. for days as our body recovers.

We fear consistency due to flareups. How do we have a daily routine when we can’t guarantee how we will feel on any given day?

We fear not being strong enough to exercise enough. How can we feel strong when our bodies are falling apart?

We fear people judging us.

We fear feeling worse, and not better.

We fear stopping. What happens if we have an exercise routine and we miss a day? Will our bodies punish us?

And then there are the things that happen that are out of our control – I was struck down with the worst flu I have ever had in my life (caught from a child, of course) and then to add to that week of hell, I ate some chicken that went off and I had “mild” food poisoning.
My Doctor strongly suggested no exercise until I regained my usual strength.

My Physiologist sat back and looked me straight in the eye when he said, “what do you really have to lose? Think about it. You feel sick every day. You feel pained, nausea. You exercise and feel worse for a few days. You don’t exercise and you are causing your body more harm. You will feel worse longterm, so we need to push the barriers. We need to feel sick for a few days in hope that in a few months we will feel better. You have felt the worst of this illness – at the beginning when everything was new and unknown. Think of exercise in the same way. In a few months you will understand it better, and understand how it works with your body and makes you feel. You have nothing to lose and everything to gain”

Valid point for a twenty-five year old young man.

We spoke further and he passed on wisdom to me that I’d like to share with you, because I noticed that I have never written a blog about exercise (probably because I have mostly been housebound for a year). So if you have already started to exercise, are making plans to exercise, or are not well enough to exercise now but hope to in the future, I have some tips for you:

START SMALL
We aren’t expected to benchpress, run a marathon or do 100 squats on our first day, our first week or first month. We must start incredibly small and build. I kept questioning my exercises as being too “light” on my body, but he compared me to a child. We are learning to use our muscles again – the ones that have been in bed for a year. We have relied on walking sticks, wheelchairs and people to be our leaning posts and aids when we feel dizzy. We sit down when we are tired. We don’t get to go out much. We don’t use our muscles like we used to.
Our bodies are weak. We are weak.
We must strengthen, but slowly.

BE CAUTIOUS WITH MANIPULATION AND MASSAGE FOR CHRONIC PAIN
We can’t trust everyone we see when dealing with Chronic Pain. I have seen numerous Osteopaths, a Chiropractor and a Physiotherapist, and today some alarming things were brought to my attention. I have been left literally crippled after manipulation by the three specialists above. I was told today that all of the exercises these people had asked me to do, and all of the money I invested in seeing them, was a waste and causing me more damage. For each manipulation technique that took place, I was twitching nerves in my neck and back, damaged by the Shingles.
The exercises they gave me to complete at home, in between our weekly sessions, were causing more strain on my back, which caused more strain on my neck, and the pain excelled instead of settled. I would go back to them for adjustments, and the cycle repeated.
Manipulation must be used with caution to chronic pain areas.

DON’T BELIEVE EVERYTHING YOU READ ON THE INTERNET
I have spent months Youtube-ing videos of Yoga and Pilates exercises to do in the comfort of my own home.
Little did I know that these exercises are actually putting more stress on my body. They are designed for “healthy” people, not the Chronically Ill. You need to find a professional who understands your condition and your limitations.
Which leads us to the most important point:

CHOOSE AN APPROPRIATE PRACTIONER
I am not completely against Osteopaths and Chiropractors, as many years ago I found them to be great use for a muscle injury I had.
But if your sole purpose is to try and get fit, or you have been told that you need to manage your Chronic Pain through Exercise, then I recommend that you too find an Exercise Physiologist.
Don’t walk into a Gym and request a Personal Trainer – they will make your body train intensely and it will cause you more damage. Exercise Physiologists are trained to deal with Chronic Pain patients and will tailor an exercise routine to YOUR body and symptoms.
Best of all – they are not allowed or trained to manipulate your muscles. They guide you through appropriate techniques at your own pace.

GET INTO A ROUTINE
Routine for Chronic Illness is a must regardless of exercise.
If your body is in a routine, it functions a lot better than without a routine.
It does not have to be a strict routine – just a loosely based one, so you can still cater to your symptom fluctuations.
I wake up at 630am every morning, I have a coffee and take my supplements. I am out on a walk, or starting exercise by 830am. If you aren’t a morning person, then by all means train at night, BUT be weary that if you train before bed, your blood pressure will drop after your session and it is not recommended to go straight to sleep with low blood pressure. This is why I try to train before 2pm; before I get tired.

DON’T COMPARE YOURSELF TO OTHERS
Not all of your friends or Gym buddies will have Chronic Pain or Chronic Illness so there is absolutely NO point in comparing yourself to them. Don’t compare your body to them, strength or regime. Their exercise regime is tailored to their needs, and yours is tailored to your condition.

TAKE BREAKS OR REST DAYS
This isn’t going to be easy. Remember how long you have been at home for, how much medication you are on, and how little movement you are able to do. My Physiologist stressed that we cannot train seven days a week. We must allow two days of rest, ESPECIALLY when we start training for the first time.
You can also split your exercises up throughout the day so your body doesn’t tire too quickly.
For example, my minimum time limit for walks is 10minutes, but my maximum is 20. I don’t have to walk ten minutes straight. I can walk for five minutes for times a day.
I am only allowed to do thirty squats a day.

KEEP TRYING AND BE PATIENT
Strength will come in time.
Time might mean three months, it might mean a year.
If you try and fail, try again.
It is okay to take a break and try again – I have a hundred times before today.
If you keep trying, you can’t be so hard on yourself if you fail. And, you will fail. Everyone one day your small steps will be much bigger ones.
You need to be patient.
Wanting to exercise is the first good step.

Remember that fear is healthy for people like us to experience, especially when it comes to exercise. A year ago, I never thought I’d exercise ever again. When you are not in control of your body, and its symptoms, it is hard to think of being “strong”.

I am including my Exercise Regime below, so you can get a rough idea of how “small” I am starting. I don’t want you to think that I am running around ovals, or doing jumping jacks whilst dancing to Zumba.
This is incredibly LIGHT exercise, and some of you might be saying “that isn’t exercise”.
I am incredibly sore the next day after doing this – trust me.

I am going to try my absolute hardest to keep up this regime, and will keep you up to date with progress. I hope that this piece makes you think about your own Chronic Pain, and possibilities of introducing exercise into your day.

IMG_0879

If you are already on an exercise plan, I’d love to hear about it and how you are going/feeling. Please comment below!

C xo

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Happy One Year.

One year ago today I began my blogging adventure. I have met some incredible people through here, heard many remarkable stories of courage, and have made lifelong friends.

Thank you for welcoming my little blog with open arms, and giving me hope even on my darkest of days.

I hope, that with your assistance, we can continue to spread awareness for our Chronic, Invisible Illnesses, and grow this “little” blog into something viral. 
I could not have done what I have without YOU. I hope you continue to follow me in my journey.

Lots of love, and endless gratitude,

C xo

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STRONG Enough?

We each go through days when we tell ourselves that we are not “strong” enough.
Why?

Because society categorises us as not being “strong” enough.

As we go through our journey, we are subconsciously being attacked about our lack of strength; in ways that most of you might not even realise.

We watch television and are inundated with Gym Advertisements and the physical STRENGTH that each person possesses. Because exercise equals physical strength, and everyone automatically assumes that you are ill because you are not exercising, therefore you are not STRONG.
We use social media as self-promotion, and for product-promotion.
Here’s a line that many of you will know of, the dreaded “take this and you will feel STRONGER/better
We post photos and videos of moments that highlight our STRENGTH and happiness.
We leave Specialist’s offices feeling absolutely defeated after they use the cliché line “you just have to be STRONGER”, and one that was used on me last night “you have the STRENGTH to overcome this”.
We go home and we hear this popular line of encouragement used by our loved ones in an attempt to make us “better”. They have not experienced what we have, so they associate strength with getting better and tell us to be STRONGER. That is really their way of saying “I just wish you were better”, and that somehow if we try harder we can overcome our medical challenges.
We buy magazines, with covers of STRONG, healthy people.
Strength is marketed.
We leave Doctor’s offices being surrounded by people suffering from the common cold virus, and we subconsciously tell ourselves that we wish we just had a common cold because then we’d be STRONG enough to fight it, beat it.

And so, we go through each of our days telling ourselves that we are strong enough because of the comparison to others.

We go to bed wondering what else we could have done in an attempt to feel “better”, “stronger”.
We question ourselves; and please don’t lie, because if I can admit to doing it then I know you have too. We will sit in a slump, questioning our own body and what we have to do in order to gain this so-called-strength that everyone speaks of. We will cry, we will scream; wishing for our course of events to be different.

We pressure ourselves, because we feel pressured.

Example of Chronically Ill Brain:
Who do I speak to? Hello? Tell me.
Where do I obtain such strength to overcome my illness?
What does it mean to be strong?
Am I not strong enough?
Do I have to exercise, or exercise harder?
Do I have to eat healthier, or attend that party that I fear I will be too sick to make it for?
Do I have to gain muscle, or throw myself into a job?
Do I have to work five days a week instead of two?
Do I have to drive to that appointment, even though I feel too ill?
Do I have to step out of my wheelchair, or
not feel depressed?
Strength, strength, strength.
Why am I not strong enough to beat this?


I am here to tell you that,
I know the STRENGTH that it took to get out of bed this morning.
I know how many times you hit your alarm because your body ached.
I know the STRENGTH it took to feed your children and nappychange them this morning, and the effort it took you to have a shower this morning.
I know the STRENGTH you had when you dragged yourself to that appointment, and used all of your energy chatting to your Doctor about progress or decline.
I know the STRENGTH that it took to try and exercise today, even if that means walking to the mailbox and back.
I know the STRENGTH that it took to tell do, or say, something thoughtful to your partner, because you feared they would not know how much you were thankful for their support.
I know the STRENGTH that it took to pick yourself up off the floor after crying what felt like an ocean.
I know the STRENGTH that it took to try and swallow each tablet, multiple times a day.
I know the STRENGTH that it took to half-smile, or to laugh.

I know.

So, when you see or hear the term STRENGTH, you are to stop for a minute and take a deep breath in.

Count to five (that takes strength too).
And then I want you to tell yourself, and whoever/whatever is in front of you questioning your strength, this:

In this moment,
I am strong enough,
to make it through the next (moment).

In this moment, YOU are STRONG ENOUGH, to make it through the next moment.
That’s all you need to know. You don’t need to know how; just know that you WILL.

You may not see this strength that you possess, but it is there and I promise you it will be pulling you through the roughest of nights, the toughest of moments.
You go to sleep begging for a way out, and you wake up wondering how you made it through the night before; there it is, your strength.
You probably don’t even know that you have it, but it’s there.
I know it is, because somewhere within me, it’s there too and I have it to thank for keeping me here this long.
Strength isn’t about pushing your body to do the unthinkable, so you then have to suffer the repercussions afterwards, and it is most certainly not about beating our diseases. We can push ourselves to achieve more, but if we fail it does not mean we are not strong.
How lovely it would be to think of overcoming our illness, and maybe some of us will, but most of us can’t. We are tied to each other (illness and you, illness and me).

Sure, it would be lovely to push ourselves to achieve more.

There are things that our illness stops us from doing, and then there are things we fear doing because of our illness, but that does not mean that we are not strong enough.

It’s all well and good for people to push us to be stronger, to try harder; because most of them think that we sit at home doing nothing all day, and then the rest of them have our best intentions at heart. They just want us to be better, and there is nothing wrong with that.

But don’t let them question your strength.

Don’t let them question YOUR efforts, because I know.
I know exactly what it feels like.
I know exactly how hard you are trying.

We might not be physically strong, we might not even be mentally strong at times, and most of us will not be able to overcome our illnesses,
BUT we possess a rare type of strength that others don’t have –

Chronic Illness Strength,

and let me be the first to tell you that this type of strength is stronger than physical and mental combined.

In this moment, I am strong enough, to make it through the next.

C xo

  
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Illness Army: “Litany of Positivity Porn”

 

All that negative stuff isn’t healthy. You just need to move on. You just need to think positively. You need to stop perceiving that darkness. Maybe you should pray to god. I don’t know why it’s like that, but there are people worse off. You’re not the only person like this, you know. I don’t know why you’re being so dramatic. I’m sorry I can’t handle all your sadness anymore. At least it isn’t cancer. You can still walk though. Why do you always talk about this? Why can’t you just talk about happier stuff? You should get out more. You should exercise more. Buck up, it’s not that bad. You just need to pull yourself up by your boostraps. You’re fine. Stop worrying. Maybe you need a vacation. When are you going to just let it go?

Stop.

But they mean well, you should just appreciate their positive thoughts. You just need to thank them for their prayers and good vibes. They were being nice. You’re just making a big deal out of nothing. You’re so ungrateful.

Your intention is irrelevant, if not selfish. You’ve exploited the sick with your brand of “empathy”. It’s fake. You may tuck yourself in carefully to get a good night’s sleep, but this culture is a gimmick. It’s a cop-out.

Seriously, your silence would be better appreciated. Didn’t your mother ever say if you don’t have something nice to say, you shouldn’t speak at all? Your positivity porn is tired, it’s old, and I’m over it. You’re trying to minimize, marginalize, dismiss, invalidate – move on because that will not be accepted.

My dearest chronically ill friends – that is what you need to say if anyone should ever utter a word of their positivity or inspiration porn. Don’t get me wrong, a healthy dose of positivity is important for experiencing the spectrum of human emotions. Happiness cannot exist without sadness. Grief does not overwhelm without ecstasy. Calm doesn’t breathe without anger swelling on the other side. We are a culmination of these experiences. Each emotion, each experience, each feeling and attitude has a place and should be weighed when we consider the human condition.

And please don’t mistake this as me saying that pain equals strength because that is not the case. There people who have moments of strength and weakness, with and without pain and illness.

But this culture of positivity needs to stop.

It is preventing legitimate strides toward a more equal foundation for the chronically ill and in pain and disabled. People are prescribing happiness in the place of medicine. Medicine that is supported empirically and scientifically. It’s intended as a placebo. A dose of sugar on our shitty lives. But we can stop it. We are sick and we are in pain, but we have a voice. Our voice matters. We are relevant. We are human beings and our health isn’t inconsequential. We are not collateral damage to a misguided drug war, or political mismanagement. We are in pain and we are exhausted. But we have the right not to be, as much as able.

Talk about it. Do not accept positivity and inspiration porn. Positivity isn’t a cure for genetic disorders. It can’t fix a congenital brain condition. Call your friends, family and doctors out on it. Correct them. Set those boundaries. And never accept less. This is critical. Do not sacrifice your mental, emotional and intellectual safety for that. Intention is irrelevant in this context. Your well-being is not.

Thank you to the author of this blog for submitting her story. You can find Shiloh at http://salvationisadhoc.wordpress.com
Shiloh is a college student and zebra with EDS-HT. She believes that the power of words can connect humans in an intimate and meaningful way, and that’s what her aim is to do with her writing.

If you have a post that you’d like to see feature on Illness Army, check out our Submission Guidelines Page.

The Many Faces Of Chronic Illness.

Hi readers,

This is a must read.

I apologise for my recent absence.
Illness Army is incredibly popular, and I have only made time to go through each of your emails and publish your stories instead of my own.
Ihave also had a lot going on in regards to my health, a few rough flareups and became lost in my dark thoughts, symptoms and busy agenda.

Even though I have been absent on WordPress, I have not been so absent on Social Media.
I have received an influx of personal messages lately reading the following:
You are looking great lately. You must be feeling better,”
and,
I have seen that you have been getting out more lately. You must feel fine!”

Incredible.
Photos begin circling of my face painted with a little bit of makeup, hair straightened, sitting in a public place and suddenly everyone remembers that I am still alive, and I am deemed as cured/better.

Firstly, I am not cured.
I don’t know how to respond to the “feeling better” statement.
I don’t know why society assumes that someone that appears to look healthy, is healthy.
If anything, I am adjusting better to my new norm.

Secondly, yes I might be out – I can assure you it was for an hour, no more.
Do you know how much strength and additional effort it takes a Chronically Ill sufferer to get up and leave the house for ‘events’?
I don’t know about you, but I personally have to be dragged out kicking and screaming. Every inch of my body aches, I am trying to hold in my wanting to vomit and the last thing I want to do is be in public being stared at because ‘the normal looking girl is walking too slow’.

I don’t know how to feel when I receive these personal messages.
Do I take it as a compliment, with pride?
Or do I take it as an insult? As people come to me after seeing a photo or a post, telling me that I look great, and then 101 question me as to why I am still not at work, why I am still in appointments, why I am still unable to drive and why I missed our lunch date.
I am continuously spoken to like they think that at the snap of my fingers I can just turn on the Health Button. It is strongly ringing in my head as an insult.

It’s always one extreme or the other.
I am either deemed well enough to run a marathon, or I must sit in my house alone all day because the symptoms are making me miserable.

There is never an inbetween.
People don’t understand that we can feel strong enough to go out some days, but still come home sick/still be sick>

Are people naive enough to think that I’m going to happily post a photo of myself when I have acne all over my face, I’ve been vomiting my organs out and I am so pale that I could be mistaken for Casper the Ghost?
Ah no, and I am certainly not going to post a Facebook status about how I contemplated killing myself four times this week, either.

I, like you, choose to only publicise my achievements; the days that are slightly more bearable than others, and the photos that make me look half-decent. Why? Because I’m human.

Forgive me if I, too, want one day where I look ‘normal’, ‘beautiful’, ‘unpained’.

Well, maybe this is the problem?
Maybe sufferers of Chronic Illness are feeling pressured to be something we are not; healthy.
Maybe this is what needs to change; I/we need to make our statements raw, and our photos as honest and natural as they can be, in order for everyone to stop and take notice of the bigger picture.

So, I have taken a ‘selfie’ every day for the past thirty days, to show you that appearances are not everything.
I am not “pretty” every day and I don’t even care.
But, mostly, I want you to see the fluctuation.
I want you to see the face behind the “makeup days”.
I want to share that there are MANY faces of Chronic Illness that aren’t often publicised.
I don’t get to pick and choose what days I am ill and unable to leave my house. I don’t get to pick and choose which events I have to cancel, or when my flareups decide to make place or for how long they last. You cannot make a solid judgement from the photos; you can only make ASSUMPTIONS.

And queue the non-sick raising their hands, asking, “but you were able to go out some days so why can’t you just push yourself to go out EVERY day?”

Some symptom days are just HARSHER than others.
The point is, I did not wake up CURED.
I felt sick the entire time, but some on some of the days the symptoms were just easier to manage than the others.

I have days where I walk down the street and you would not think that I was suffering with severe pain or nausea twenty-four hours a day… and then there are days where I look pale and pained; there are days when I run to the toilet, I can’t speak due to nausea and I’m curled up in a ball on the floor crying.

I want you to know that it is OKAY to have days where you don’t wear makeup, don’t feel like going out to see a friend, your hair looks frizzy, your skin looks like a dot-to-dot puzzle. It’s also okay to get a day where you feel well enough to get dressed up and do things, and to still come home at the end of the night being sick. It’s OKAY.

Take a look at my photos, and before you jump to drastic conclusions, assuming that I have magically overcome my illness overnight – let me tell you that I haven’t.

IMG_9785IMG_9786IMG_9787FullSizeRender

I’ll let you in on a little secret;
I was sick every single day in each of these photos…

But, you wouldn’t know it by looking at me.

C xo

instagram // facebook

Illness Army: “9 Things I wish I knew when I first fell ill”

 

Here is a thoughtful, honest piece from my friend Rhosyn.
She runs the blog https://rhosynmd.wordpress.com and is happy to chat to any sufferers who are seeking support. Rhosynhas been ill for four years now and has gained many coping mechanisms along the way, that she is happy to share with you.
Please give her a follow.

 

If you would like to see your post published, check out our Submissions Guidelines Page.

A few months ago I was laying in bed after another fruitless doctors appointment and I was thinking of all the things I wish I knew at the start of my illness, so I decided to write them down in the hope that they might help someone else. So, without further ado, here are my top tips for the recently diagnosed chronic illness warrior.

1.) Don’t dive into anything right away.

Make sure you give yourself time and space to consider which path is right for you, because there will be many, and you can’t do them all at once. I know all you want is to get better as fast as possible, but if you dive straight in without considering the consequences you could end up doing more harm than good.

2.) Let yourself grieve for your old life.

As hard as this is to hear, your life is never going to be the same again. It’s a devastating loss, especially if you’re young, and it’s incredible hard to accept that you can’t do all the things you want. I don’t think it’s possible to get over it completely, of course you’re still going to have days when all you feel are anger and sadness, but you need to let out those feelings instead of holding onto them or pushing them down. If you refuse to deal with how you feel, it’ll only get worse and end up impacting your physical health as well.

3.) Get a therapist.

I know a lot of people are reluctant to do this, and some see as a sign of weakness (mainly due to the connotations between therapy and mental illness and the stigma that that comes with), but that’s a load of crap. There’s no shame in admitting you’re having trouble dealing with everything, because who gets a chronic illness, has their life turned upside down, and is perfectly fine? Nobody.

I know therapy can be expensive, but many therapists have negotiable fees for people who are on lower income, so don’t worry about asking about that. Personally I think it’s worth every penny. I don’t think I could cope if I didn’t have someone to talk to about everything I’m feeling and help me make sense of it, it makes me feel a whole lot less crazy haha.

4.) Become your own doctor.

Our global healthcare system has a very poor understanding of chronic illness as a whole. My main illness (myalgic encephalomyelitis) doesn’t even have a diagnostic test for goodness sake!

GP’s will vary between “incredible understanding but useless” to “disbelief that you actually are ill”. I am very lucky that I have a very understanding GP, but there’s really not much she can do, so you, the patient, have to take over.

I go nearly every month armed with a list of questions, and whenever you get put on a new medication, double and triple check for any interactions with the tablets you’re already taking. It may sound obsessive, but it is necessary. You’d be surprised how often these things are missed.

5.) There will be people who don’t understand and make hurtful comments.

This was probably the hardest one to learn. I’ve always been incredible open about my illnesses, how they affect me, and how I struggle day to day. I thought by doing this I could side step the stigma and ignorance that comes with the territory of having chronic and/or mental illnesses. Oh how wrong I was… If I had a pound for every time I’d heard; “Come on, you’re just not trying hard enough”, “everyone gets tired sometimes”, or “oh I know how you feel, I feel so hungover today” (I could go on)…I’d have enough money to find myself a cure!

There’s no way to get around the fact that some people just don’t get it, and never will. The easiest thing to do is to just cut them out of your life. I know this may seem drastic, but honestly it’s so much easier in the long run. You need every scrap of energy you can, you don’t have enough to waste it on trying to get people to understand.

6.) Get used to asking for help.

Realising you can’t do things that you used to be able to because you’re ill is so hard, in fact there aren’t words describe how crushing it is. The realisation that at 22 I’m just as dependent on my parents as I was when I was a child is utterly disempowering. Not being able to walk to the corner shop, or even to walk to the kitchen to get myself breakfast… Well…there is no way to get used to it, but the sooner you swallow your pride and ask for help, the sooner you’ll get better because you won’t be pushing yourself to do things that are beyond you at that moment.

7.) Your body is going to change.

This is an important one. At the beginning of my illness I got put on a medication that caused me to gain a lot of weight. It happened so fast that I would look in the mirror and not recognise the person who I saw. It made me very depressed, and it’s something that I still struggle with now sometimes.

Everyone will experience different changes, whether it’s gaining weight, losing hair, or having bad skin. As so far as is possible try not to let it affect how you are as person, because whatever it is that changes your body, it won’t change how kind you are, how generous you or how much you love your friends and family. Those are things that matter and the things that people remember, hold on to them.

8.) Get on social media.

Being chronically ill is incredible isolating. Your energy is extremely limited, and it has to go towards the necessary tasks such as work (if you’re well enough), cooking, and many (many) doctors appointments. You will also probably find that the number of people you call friends, will decrease significantly. They do say hard times reveal true friends, and that has never been more true than with chronic illness. Initially of course, this is incredible painful, but it does get easier, I can vouch for that.

I’m sure many of you are already on social media, I certainly was when I first became ill. However I had no idea of the amazing community (the “spoonie community”) of chronic illness sufferers that exists online. Whether it’s Facebook groups, Twitter, Instagram, and (obviously) blogs. Whatever you are going through or suffering from I can guarantee that you can find someone going through something similar. The amount of support the online community offers is incredible.

9.) Some days you will feel like you can’t go on, but you can!

This is where I find Mindfullness really helpful. Day to day, I don’t think about the future, I don’t even think about next week, or tomorrow. If I did I would just collapse into an existential crisis. I just think about today, this hour, this minute. There’s no point in thinking about anything else because I don’t know how I’m going to feel tomorrow or the next day.

I’m not going sugar-coat it and say that having a chronic illness is easy, because I’d be lying, it’s not. There are days when it all feels like too much and there’s no point in anything anymore, but please know that everyone has days like that. It’s completely normal to feel depressed sometimes. All you have to do is put one foot in front of the other. The human spirit is uniquely indomitable, you can survive this!

I hope you like what I’ve written, do please go check out my main blog if you do, and please let me know if there’s anything you think I should add to this list.

Until next time, Rhosyn

Illness Army: “A New Beginning”

Another must read from the ever-so-sweet Joshua.
I am lucky to call Josh a friend.
He runs the blog http://musicismystory.wordpress.com and is an incredibly talented lyricist.
Joshua spreads hope for other sufferers of Cerebral Palsy, Depression, Anxiety and Body Image.
His story shared today, will leave you with a warmth in your heart and an overwhelming feeling of hope for love.

So, it’s been two months since I’ve written anything – not a song, poem, or blog post of any merit or substance. Why’s that important? Well, let’s just say that I’m not doing what I should be: myself.

I mean that in an expressive and artistic way, and the reason why is because I’m happy – I’m in love. My creative nature is birthed from heartache, pain, loss, fear. I don’t have those feelings now, and I have a girl in my life that accepts me for who I am.

She is of course in a different country – Norway to be exact. Sure, I know what you’re thinking: it’s limiting, too far, or not possible. We’ve talked about it countless times, and we both come to the same conclusion each time: we both give each other something that no one else ever has. Despite being 3,587 miles(5,772 kilometers) away from her, I’ve never felt closer to anyone emotionally and mentally in my life.

Is there someone here for me in New York? Sure – somewhere – but that’s not the point. Over the years, I’ve consistently fallen for girls that I’d never have a chance with if my life depended on it. ‘Just kill me now.’ I’d say.’ This ain’t gonna happen.’

I always wanted what I couldn’t have – including a “normal” body due to my disabilty – and the odds have always been against me since birth. However, my biggest struggle became the catalyst for how I’ve accomplished anything in my life. I can do anything you can – I just do it differently – I’ve obtained everything in the opposite fashion and I applied that to relationships, too.

And why not? Why shouldn’t it be different? I’m never gonna have a regular life – and that’s okay. Conventionality can bite me. And the thing is, this girl that I love is different. She’s human, she’s reflective on what she’s done – what she sees – and she acknowledges that – to me anyway and I her. That’s what’s important. We acknowledge one another.

Those other girls who I’d never be with in a million years liked me for one of two reasons: I knew what to say in the face of their adversity, and they had boyfriends they didn’t like. A lot of people are superficial, apathetic, and worrisome of their image if they’re with certain people. I’m that certain person to others when it comes to relationships.

I couldn’t give less of a shit now if I’m not enough for you. I’ve “tried” the online dating thing and it’s the same bullshit. Everyone’s afraid of saying what they want, and when someone is honest in what they want, the system designed to “find your perfect match” – based on nonsense – gives you a big fat middle finger.

Online dating prays on the fears of lonely people who’ve been rejected by society only to reject the want they desperately need: love. You can’t live without it. It’ll kill you before you give it a chance at times. I’ve been dead up until I found this beautiful girl named Anette. The love she’s given me and the love I have for her have saved me from eternal somberness and stifling heartbreak.

She’s proved to me that I’m loveable, I’m “good enough” – even though she’d say great – and most importantly that I’m capable of everything I’m afraid of. I’m so grateful for her and she’ll be visiting me in June. It’ll be the first time that we’ll be at fingertips length.

I can’t wait to meet you, Anette. Thank you for making me see the beauty that is life and for showing me what love’s about: empowerment and encouragement of one another through light and dark times.

I love you.

If you would like to submit your story of hope during illness, check out our Submissions Guidelines Page. I look forward to hearing from you.