badnight

Tired.

My stomach is aching.
It hasn’t been this way for months.
I can feel every tiny thing that I consume, struggle to digest in my stomach.
The medication is meant to work.
Why isn’t it working?
How did my stomach just… change?
I think back to my diet over the past few days.
I must’ve slipped up, I must’ve slipped up somewhere.
But I can’t find where I went wrong.
It bubbles and gurgles away; bile rising to the back of my throat.
I sit outside for air, I drink digestive tea, I chew Peppermint Gum, I take anti-nausea medication, anti-stomach cramping medication… anything and everything.
The feeling doesn’t change.

I scroll away at Social Media, feeling further isolated from society.
Birthdays being celebrated under the stars,
Falling in love and going on romantic dates,
Exploring the world,
Working for great companies,
Absorbing knowledge through courses,
Tasting new cultures,
Engagements, weddings, children,
Conversing with friends over coffee…
And meanwhile, I am stuck here… alone.

This illness has stolen everything from me.
I am forced to cancel on people for gatherings because I am too unwell to attend.
I feel an anxiety when my symptoms are at their worst – I feel embarrassed to be in public. I feel embarrassed to feel nauseous, and have to hold onto someone for balance support.
On the other hand, people let me down too.
They aren’t willing to negotiate. They don’t understand that I’m unable to do “normal” things anymore.
If you’re too sick, then don’t come because I can’t put up with it”
“Lets go for dinner at this place… oh, you can’t. Maybe you can come with us when you are better”

Is it selfish of me to ask for these people to squeeze me into their routine, and alter the program a bit?
So, I can’t go out for dinner or ‘out’.
I can’t move from my bed.
But, you can come and sit with me for an hour?
Talk to me?
How silly, Cass.
People won’t alter their lives just because you are sick.

I was forced to stop working and studying, so my days are filled with mindless television and the struggle to walk to the bathroom and back.
I am unable to drive, and most days I am unable to look at my laptop screen or mobile.
I sit here and watch the sky change colour from dawn till dusk, and repeat.
Meanwhile, everyone is off living their lives.
I am forgotten.
My sibling works now, as do my parents. They are rarely home, and IF they are, we usually have appointments to attend. They do so much for me – their entire life has been revolved around me. When they decide to go out with friends, on days like today, I nod my head in agreeance.
I will be fine on my own, I tell them.
I lie.

Inside, I’m crying out that I need them to stay. Stay here so I am not tempted to leave.

No. They need to go. I need them to live their lives, even though mine has stopped.
On the days like this, where the depression swallows me, I picture my lifeless body hanging from the outdoor gazebo.
Why me? I ask. What did I do?
They can’t fix this, nor the Doctors.
Nobody truly understands, no matter how much I explain it to them.
Nobody understands until they go through it.
I rewrite my Goodbye letters over and over.
They are not perfect yet.
I’m tired of feeling, of being hopeful, of listening to advice, of fighting my own body. I’m tired of being told what to do, what to try. I’m tired of missing out. I’m tired of falling behind.
I’m so tired.

When it’s not one thing, it’s the other.

The “Positives” (as some would call it) of my past two weeks, were having one of those weeks nausea free. My stomach medication allowed me to eat anything and everything in sight. I also went to my Doctor for my monthly check-up, and I have gained two kilograms.
I saw glimmers of my old self creep back in. The small improvement made was definitely a little bit exciting. I should probably be more excited, but I guess that I hoped once we hit the eight-month mark, I would have had more answers than I do now.

Baby steps, I know.

On the plus side, I also managed to go to the Grocery Store with my parents yesterday, and zoom the trolley in and out of the aisles. I’m not going to say it wasn’t a struggle to remain standing (thankfully I had the trolley to lean on), but I made it through.

The downside to my past two weeks were the side-effects I got from taking Lyrica. My dizziness hit its worse point, and I struggled with what I refer to as “brain fog”. I sat on my couch for seven days and felt completely numb, except for my neck (which was really the ONLY place I was meant to feel numb).

I can’t explain the fear there is in being as dizzy as I was. My dizziness daily usually scales at 7. This was a straight out ten.
My head spun whilst standing, sitting and lying down.
I thought that if this illness was going to kill me, it would be now.
So, even against my Specialist’s wishes, I made a conscious decision to change my dose to one tablet per night instead of four a day. To my relief, my Dizziness has subsided to its usual level of annoyance, and my brain fog has mostly cleared. I’m not sure my Specialist will be happy about this, but I am an honest believer in the term “you know your own body better than anyone else”.
I have an appointment with an Ear, Nose and Throat Specialist next week, as well as my first big meeting with the Government to organise a Disability Payment.
Both are bringing me anxiety.
I have probably seen close to fifty Specialists this year alone.
I am mentally exhausted.
Telling everyone this story, from start to finish, over and over again.
And, he’ll probably look at me like I am crazy.
I’ll probably pay him $400 to tell me that he cannot help or guide me in the right direction.
It is most likely a waste of my time, but I have to cross it off my list.
My Acupuncturist (the wise one that he is) summed it up pretty nicely today.

“Are you better? No. So, you have to seem him. You have to think of it as just another opinion”

And that I will do. There is a very slight possibility that he may be able to help.

The Government is also making my anxiety soar.
Sitting in a room, being looked over by their Doctors who are probably very narrow minded and have never come across a patient like me before.
I just don’t understand how an hour with them potentially “diagnosing” me, compares to my own Doctors and Specialists working on me for almost eight months and being unable to diagnose me.
It isn’t fair to take one glance over me and tell me that they think I am able to return to work because I appear to be well on the exterior.

Maybe they will surprise me?

Fast forward to the present, and my body is absolutely exhausted from my Osteo, Physio and Acupuncture appointments over the past three days.
My nausea has returned, as well as a worse case of the dizziness.
I also have these really great stomach cramps. I haven’t had them for at least three months.
I am stuck eating mushy food, dry crackers and sips of water.
I have noticed that after you have a rare set of good days, and the bad days return, they hit you a lot harder. I feel unable to cope. My body became somewhat adjusted to the dizzy spells and the nausea, and when they temporarily disappeared and my brain went on a happy high. I forgot what it was like to feel this… ill.

Now, set back into my reality, I don’t know how I managed before.
It seems foreign to me.
I was offered a tiny fragment of my old self, and then it was snatched.
It didn’t even last very long.
I feel robbed, and disappointed in myself… My body has shown me that it has the capability of getting better. Why can’t it just get better and not slip backwards?
I’m sitting here wondering how long it will take before I get another day where symptoms are at ease…

Someone special is taking me on a little adventure tomorrow.
I just hope I am even semi-well enough to go and to enjoy it.

When it is not one thing, it’s the other.

The Beginning of the End.

I’m struggling to find a reason to stay here.
I don’t want to fight anymore.
I have fought long and hard enough.
The past two years have been a blur of disappointment, illness, appointments, yelling, heartache, jealousy and the unknown.
The past six months have been a living nightmare.
The thought of leaving doesn’t scare me anymore.
I find peace in knowing that I will be numb, for once. I’m sorry if that is too raw for you to read, but it is the truth. I long to feel nothing.
I’ve forgotten what it feels like to feel anything beyond these symptoms. I toss and turn all night battling the neck pain. I wake up feeling nauseous, and when I go to get up and out of bed, I usually fall to the floor due to the dizziness. The nausea stays all day, despite what I eat, what I drink, what medication I take. The dizziness keeps me from walking on my own. I hold onto the shower door with a tight grip, I hold onto the benches and drag myself around the house, I hold the walls, I hold onto someone when I have the energy to leave the house… Sometimes I even have to crawl.
How pathetic is my body?
How pathetic am I?

I can’t even stand on my own anymore.
I can’t eat a normal meal without feeling grossly ill.
I can’t go out to the Grocery store, or drive a car, or go to work for even an hour. I can’t go out with my friends, or enjoy myself. I couldn’t even keep a relationship going. I have no energy. I am now that person who has to rely on others to help her live. I have been stripped of my confidence and independence.
The only travelling I do is to and from appointments, and in saying that, I have to beg people to take and accompany me to them.
I am an embarrassment.
I’m exhausted from the continuous appointments with Specialists and Doctors who have no reasonable explanation as to why I am so sick. I receive a diagnosis, and you’d think it would be enough to move on with my life, but instead, they strip me of that and tell me that they ‘aren’t satisfied’. So, I am back at square one again, unable to manage this invisible something. I’m tired of the tests, the Health speeches, the medications, the trials, the dead ends.

I’m tired of feeling.
I’m tired of the sympathetic stares, and having to explain this to people and have them look at you like I am stupid. I’m sick of hearing, “but, you are SO strong”. There is no strength in this illness – only weakness and repetitive torture.

I hate social media at the moment as it is a constant reminder of what I am missing, and what everyone else is gaining. Marriage, kids, travel, graduation, friendships, dating, health. And here I am, stuck and incredibly alone. Yes, I am jealous. Judge me, I don’t care. When you have had everything snatched from your hands, you are entitled to feel jealous.

It doesn’t matter how many people tell me how strong I am, how many people tell me they are here for me, that they understand, that it is a mind over matter thing, and that it will get better if I stay positive…

They are wrong.

You cannot possibly understand if you haven’t been through it.
I feel as though I have no control over this anymore, and that I will never achieve anything I set out for myself.
When I thought it had taken everything from me, it took the man who I thought was the love of my life. Because being with someone who is this sick is too hard to deal with. And now, I am left having to fight alone; fearing nobody will ever live thing inside of me with this ever again.
I’ve forgotten the little things.
What it feels like to have sand in between my toes, the wind in my hair as the windows are down in the car, walking through the city, the nights spent in hotels, watching the stars from late night drives, trips away, the warmth I felt when I worked with the gorgeous children, the pride I felt when I finished units in my course, dressing up with a face full of makeup and confidence, shopping, coffees and catchups with friends… It all feels like a dream to me.

What is the point in me staying here, and continuing to fight? To feel no change? To have no control over my own body? To continue to be set back? Lonely? In pain?

What about my happiness, and what I want?

When do I get my day free of these awful symptoms?

When do I get an answer, or a way to manage?

I am tired, and I’d like to go now.

I fear as though this world is too big for someone as small as I.

I feel as though this battle has already been lost.

Diary from a hospital bed.

Thursday:
The walls are white, as white as I.
The cupboards are pale blue.
There is one chair to sit on for visitors.
The bed is high, and the pillows are too soft.
The lady next to me, eats and vomits, eats and vomits.
All of the patients are wearing white, but not I.
I’m in black leggings and a black tshirt.
They are staring at me.
Why are you here? They ask.
What are your symptoms?
What medications are you taking?
Pain scale from 1-10?
Here, take this tablet.
Have you tried…?

I am sick of answering questions and repeating this story. Nobody has asked me who I was before this illness… they’re only worried about who I am with it now.

Friday:
I have barely slept.
The nurses here are as lost as I am.
The nurse’s button isn’t connected so we each have an oldschool bell to ring when we need someone. The nurses cannot hear it. One poor old lady next door to me rang hers from 2-3am until someone came to her aid.

This ward wasn’t meant to be open,
the nurse said. It’s only half ready.
I haven’t seen many nurses today in here.
They’ve left me.
I saw my Dr once, but he was in and out as usual.
I had to fast from 12am. And then my IV was taken out and I was told to take Metamucil every fifteen minutes for THREE hours. I am amazed that my stomach kept it down. My nausea is incredibly bad.
The stomach MRI went for an hour opposed to twenty minutes.
I was interrogated by a Dietitian. Are you bulimic? Anorexic? Drug addiction? Abuse? What do you eat? How much? Did a life event cause this? Are you sure you aren’t forcing yourself to not eat?
Please stop.
I had a test for Addison’s Disease. Oh my, the pain. I was jabbed in the shoulder with a drug called Synacthen, and had nine blood viles taken from numerous veins.
I caught a glance of myself in the mirror today and burst into tears. I have faded to nothing. I am exhausted, mentally and physically.
I can finally eat after fasting for more than twelve hours, and I don’t even want to. I have no desire for food as all I can taste is Metamucil in the back of my throat.
I am trying to stay positive, but it is hard to not hate it here.
I miss my bed and family and friends.
I miss being able to shower in my shower.
I miss my food, and my routine.
Mostly, I miss my health, and I am reminded of why I have to stay here.

Saturday:
I’ve had a lot of visitors today, as I assume I shall tomorrow. I’m exhausted. A fill-in Doctor told me that my results came back as negative – I am ‘perfectly fine’, apart from having Gastroparesis. Apparently the only thing that showed was a semi-low white bloodcell count… sign of infection? He didn’t seem worried by it.
Strange, because I feel anything BUT fine.
I feel worse here than at home.
I’m quite dizzy, pale-faced, crampy in the stomach and bowels and very nauseated.
The Nurses keep giving me medication, upon medication. My little body is not used to it.
They make you feel so small; the Nurses and the Doctors. Or maybe it is just me…
I must await Monday for my usual Doctor to return.
I must remind myself that I’m not losing my mind. It’s a bit hard when the world is against you, and your body won’t negotiate.
On the plus side, I finally got a red jelly cup last night instead of yellow.

First world problems right here.

Sunday:
More sleepless nights.
The older lady next to me was moaning all night.
She moaned before sleep, during sleep, when she went to the bathroom. Constant moaning.
Then she started yelling in Italian. I assumed she was dreaming, or she was yelling at me to turn off my light.
I had nausea and intense abdominal cramping all night despite my efforts to get rid of it. I tried deep breathing, my acupressure bands, a cold towel, as well as every medication you can think of.
Maybe that’s the problem – the overuse of medication.
The nurses seem to think that because I don’t have any limbs falling off, or any scheduled surgeries, or visible symptoms that I don’t need to be attended to. I haven’t seen a nurse all morning. They think I am taking up space for someone who ‘really needs it’. Little do they know that I don’t want to be here either. My Doctor insisted. He seems to still believe there is an underlying mystery cause to my illness, and that we have no chance in getting me better until it is found. I wonder if he’ll feel the same tomorrow?
The dizziness is overwhelming. I tried to have a shower alone today, and held onto the railing fearing I would fall. My body is so weak. I miss little things like that… being able to enjoy a shower without fearing I’ll lose my balance.
There’s something about hospitals that saddens me. I’m not sure if it’s the general gloominess, or the fact that I’m the only young person I’ve seen in days of being here.
Tomorrow my Doctor comes to visit, which shall be interesting.
I can’t help but wonder – will I ever recover from this?

Diagnosis Part One.

I’m not sure about you, but I have dreamt of this day for a long time now. The moment when the doctor sits you down, rests one hand on your leg and puts his sympathetic facial expression on and says, ‘We finally have an answer. You have…’

They have an action plan for you, maybe some medication to ease the symptoms and you are opened to a community of fellow sufferers.
In the back of my mind, I never thought this day would come. That I would rott here for the rest of my life with these symptoms, wasting money on specialists and medication and never be myself again.

Today, I received a call from one of my Gastroenterologists. I can tell you that I was not expecting a call this early, or for her to begin our conversation with ‘we finally have an answer. You have… a severe case of…’

Gastroparesis.

(Gastroparesis:
– partial stomach paralysis when digesting food.
– longterm chronic condition with no cure
– symptoms usually include: chronic nausea, loss of appetite, bloating, stomach pain, body aches, heartburn.
– Leads to rapid weight loss and malnutrition, depression, anxiety and a range of other great symptoms
– usually found in people with Diabetes, Autonomic Neuropathy, Neurological Conditions and damage to the vagus nerve)

I said nothing.
‘It’s unfortunately rare for someone your age to get this, and this severe…’
My heart sunk.
‘Young people just don’t get this out of the blue… We have spoken about it and think your body has a virus that has unfortunately caused it… It could be causing your other symptoms. The drug we prescribe for sufferers is Motilium but we have already trialled this on you and it showed no success…’
I tuned out at this point.
A rare condition – of course.
You keep coming back to this mystery ‘virus’ that nobody can seem to locate, or name.
It doesn’t explain the dizziness, or maybe it does.
There is no cure.
You have already tried the prescribed drugs for management with no success.

You have already changed your diet.
We are still stuck in limbo.

I cried – pretty hard.
She assured me that we would keep trying.
She encouraged me to speak to my Doctor tonight, and that this wasn’t an overall “bad result”. In order to properly treat it, we must find try to find the underlying cause.
I unfortunately have to wait a few weeks to see my Gastroenterologist, because he is booked out.
We wanted an answer, and now we have… half of one.
Not even half… A quarter, maybe.

The rest of the conversation was a blur.
I thought I would be happier with a name, but I’m quite the opposite.
You search for so long, you lose everything you had; all to receive a partial diagnosis of something rare that is yet to be helped/cured medically?
I don’t know what to do, I don’t know what to say.
I have so many questions.
Am I happy that it has a name?
Sad that it is rare and hard to manage (in my case)?
Relieved that I am not crazy?
Upset that they still think there is an Invisible Virus behind it?
Where do I go from here? Neurologist? New doctor? New specialist?
What treatments do I take/trial?
How do I improve?
Will I ever eat normally again?
Will I ever put on weight, or will it keep decreasing?
How do I stop the nausea, the unbearable pain?
What the hell is making me so dizzy?
How on earth did I get this?
I am twenty-two.
How should I really feel?

The uncertainty, the loneliness, the disappointment.
Today feels like the beginning,  all over again.

Not as inspirational as you thought.

Another doctors appointment where I come home in tears.
My symptoms have worsened this week.
I am not Superwoman.
I tried to explain it to him.
I am too dizzy to walk, my stomach won’t digest food, my nausea is taking over my day, my vision is deteriorating, my neck muscles are throbbing and throbbing, and never stop throbbing. I am growing weaker, and weaker by the day.
This thing has ruined my life, and I will not let you sit there in silence and give me that sad ‘it’s-all-in-your-mind’ look. People don’t just get these symptoms for it to be diagnosed as NOTHING.
Everyone is moving, and I have stopped.
But I can see them. I can see their judgemental stares.

I spoke so quickly, my sentences were coming out as word vomit. I brought out my little pre-written timeline, and I showed him all of the referrals I wanted next.
I gave my doctor a gameplan.
I told him what we do next.
After the Gastric Emptying Test on Thursday, I want more blood work done.
I want an MRI for my neck.
I want my goddamn life back.
I want my body back.
I want my energy back.

I want someone to believe me.

His stupid facial expression felt like a hundred arrows had just been shot into my heart at once. It felt like I had been lit me on fire, and I could feel every ounce of my skin burning.
I felt so naked, so exposed.
And inside of me, whirling in the pit of my stomach, It held back my hair because it could sense vulnerability, and It chuckled in my ear; it’s all in your head.
“Anti-depressants,” was the only word he said, that cut me from my thoughts.
These were his only words in my half an hour appointment.
BECAUSE ANTI-DEPRESSANTS JUST MIRACULOUSLY FIX EVERYTHING, DON’T THEY? I am depressed BECAUSE of the illness terrorising my body.
But hey, anti-depressants will definitely get me out of here so you don’t have to deal with me anymore.

A few of you have asked my where I see myself in the future, and if I have any dreams? Will I go back to childcare? Do I want a family? Do I want children of my own? Do I want to travel?

On nights like this, I imagine my future self in a psych ward, being pumped with medication, my mind corrupted by this disease, my visitor’s log empty.
I don’t have a family, I don’t have friends, I don’t have Love, I don’t have hope, I don’t have control.

Sometimes, I don’t even see that.
I see dirt, rotting flowers and complete darkness.

You : your worst critic.

If dealing with the symptoms of Chronic Illness wasn’t enough, we also have to deal with the physical changes in our bodies, and having to face them mentally.
With detiorated health and immunity, comes physical changes that we have no control over. For example, I have lost weight at a ridiculously fast rate so I’m currently all skin and bones, my hair is falling out in clumps, my skin has turned to sandpaper and all of the colour has drawn from my face and turned me into a ghost. I look in the mirror and see someone who is sick, but I honestly cannot see the change in my weight. Others, can and they aren’t afraid to point out that I have a ‘problem’. They aren’t afraid to say,
‘wow you look shocking today’
‘Have you seen your um… face?’
‘What is happening with your hair?!’
‘You’ve lost SO MUCH WEIGHT’

I know that people aren’t doing this intentionally. They are stating facts, and probably don’t really know what else to say. So, um, maybe just don’t say anything at all?
Because yes, it bothers me, and I have no control over it.

If you read my post from earlier on in the week – Parents in the Shadow of Illness – you would have read that I was sent to an Adolescent Clinic in my earlier years. Sufferers of Anorexia, Bulimia and Body Dysmorphia were sent to this clinic too, so I was exposed (at a very young age) to this disease upclose and personal.
I didn’t know exactly how each of these teenagers felt, but what I understood from my time there was that they looked in the mirror and saw a completely different image to what was actually reflecting them.
I saw them hide behind their oversized jumpers and baggy tracksuit pants, and then further behind a trench-coat, because they weren’t happy with themselves.

I, myself, had been diagnosed with ‘Borderline Anorexia’. I remember asking myself, what the hell is the difference between borderline and straight out anorexic? We’re all underweight.
Why further break us down into smaller stereotyped categories?
Someone then told me that my illness was causing me to lose weight, and these teenagers were ‘doing it to themselves’.
No. It is not something that you ‘do to yourself’.
It’s a mental illness, or some people like me had no control over it as it was an alternate issue causing the weight-loss. It didn’t matter because it led to the same thing in the end; being underweight, unhealthy and judged.

When it comes to Body Image in general, why is it that we always believe our worst reviews? We can never accept a compliment, and when someone has the nerve to criticise our appearance, we let that cloud our mind and eat away at our thoughts.
There is always something, with EVERYONE, regardless of gender or social status.

Why do we become obsessed with wanting to be like someone else? As skinny as the celebrities, as tall as the models on runways, as attractive as that guy/girl you just saw on the train? (and here’s another thing, don’t gender discriminate. Guys suffer too). You’re looking at one girl, wishing you had her waist. She’s looking at another girl, wishing she had her breasts. That girl is looking at a guy, wishing she had his hair. And that guy is looking at another guy, wishing he had his body. It’s an endless cycle.

Isn’t there something beautiful in being DIFFERENT?
Imagine a world where we all looked exactly the same – that there was a median for men and women. Yes, there would be nothing to compare ourselves to, and no individuality! We would all blend in and there is no fun in that, is there?

There’s always something to complain about.
We wish our teeth were brighter.
We wish our thighs were skinnier.
We wish we had less spots.
We wish we were taller, shorter.
We wish we were curvier.
We want smaller breasts.
We want larger breasts.
We want less hair, more hair.
We want to be darker.
We want ‘natural’ skin, yet we use more makeup.
We want to look ‘beautiful’. What is beautiful, really?

I think that the true definition of ‘beautiful’ is being able to completely accept yourself with all of your flaws and imperfections.
To be able to look in the mirror, and PAST all of the negativity, and be proud of who we are, where we come from.
Sure, it’s great if you want to work on yourself and create a better you, but don’t interpret that as losing yourself in creating someone else.

As I said above, this illness has made my own personal view of my body and beauty, pretty harsh. Sure, I have the occasional day once every few months where I have a family event, slap on some make up and try to look ‘pretty’, but that’s rare and it doesn’t mean that I feel good on the inside.
I still cry every day because I don’t look the same as I used to. I cry because I feel unattractive. I cry because I can’t fit into my favourite clothes anymore. I cry because my body is working against me.

I am like you, my worst critic.

So here I am, flaws and all, sharing with you that it is PERFECTLY OKAY to not be someone else’s definition of perfect.
That we are beautiful with our illness, and without.
Bad Day vs. Not so Bad Day
We need to stop hating ourselves, and start loving ourselves.
You, are not alone X

You are NOT your illness.

“So, tell me about yourself…” is how one Specialist began our first appointment. He went on to tell me that he had to really get to know me, in order to understand how to treat me, and what my body could or couldn’t handle.

My response was, “I’m sick. There’s nothing interesting about me”
To which he said, “But who are you without the illness?”

I realised at this moment that I had allowed my Invisible Illness, to define me.
Please remember this introduction, as I quickly move forth a little.

I had a bad night with my symptoms, which seemed to have carried over to today. The more I focus on it, the sooner I notice that the chain reaction has begun inside of me.
Firstly the symptoms, which leads to the sadness, followed by the tears, an anxiety attack, and finished off with heightened symptoms.
I decided to research, which turned out to be a mistake (as well as a blessing for this topic post) and came across a post in which I was not impressed by. It had somehow received over ten thousand views/likes/hits, (the name I will not mention) and I am at a loss trying to figure out how/why. It did made SOME valuable points, but overall, the article pretty much stated that sufferers of Chronic/Invisible Illness need to ‘toughen up’.
We have to force ourselves back to work, to preoccupy ourselves.
We have to stop whinging.
We have to get out of bed and force ourselves to fight, or else we aren’t fighting back.
We must stop spending our time on appointments and in Doctor’s surgeries, and focus on management techniques.

You like tough love? Then this post is much suited for you.
But I, a sufferer of an Invisible Illness attacking my body, do not agree.
I have some days where my symptoms are controllable enough for me to see my friends, go to the grocery store or allow me to live normally. I still need assistance, but I do have good days.
But, I also have days where my body is so exhausted that I have to rest, stay indoors and rely on people for assistance.
It isn’t my choice.
It is the way things ARE.
Do not always believe what you read on the internet, or feel disheartened if you come across something as harsh as that.
YOU know YOUR body better than anyone, so don’t let others tell you otherwise.
The outsiders see black and white, but we are exposed to an array of colours.

I decided to write my own coping mechanisms whilst dealing with this nightmare.
Stop questioning/asking why
Let me check WebMD for a diagnosis.
Maybe I have lymphoma? Bacterial Overgrowth? An autoimmune disease?
I am being punished for being a bad person.
This is karma for taking things for granted.
Is it because you had two cheat days last week?
I am sick because of that messy night out I had a few years ago.
I am just overall unlucky.

If this sounds like you, then you must STOP.
I know how easily it is to fall into this frame of mind. I still do it when my days are overwhelming.
But, you are making things worse for yourself, not better!

Stop hating yourself
Make peace with your body, and mind.
This is NOT your fault, and instead of feeding your mind more negative energy, you could be surrounding it with positive.
Go to a mirror, and instead of pointing out the things that you HATE about yourself, (ie. The loss of weight, the acne, the nausea, the paleness, the hairloss) point out the things that you LIKE about yourself.
At the end of every day, write down something you are THANKFUL for, even if it is seeing that little bird perch itself on your window sill whilst you were stuck in bed all day.

Understand your symptoms
Confront/Organise/Control
You need to be able to live with the least amount of suffering as possible.
Admit you have an illness that can’t be diagnosed, and don’t be ashamed of that.
Observe your body and take note of what helps ease your symptoms or what worsens them.
Organise appointments, write a symptom or a food diary, a Medical Timeline, have a calendar ready.
Have Control. Only ask your body to do what it can tolerate.
Work WITH, not AGAINST.
And please don’t say, “I can’t”, because you CAN.
You may not realise it, but you do it every single day.
You are living proof of this!

Pinpoint your stressors
Stressors usually include:
– the Chronic Illness itself
– Symptoms
– Uncertainty of the future
– Financial Difficulties
– Immobility
– Insomnia
– Negative influences
– Feeling of loneliness/inability to open up to anyone
I know we can’t control/rid ourselves of some of these stressors entirely, but we can learn about them and learn how to manage them.

Have goals
Continuing from the topic above, your goals should be small… take baby steps.
For example, “Today I will…”
– eat three small meals.
– get out of bed.
– make a Medical Timeline.
– write a blog.
– work from home.
– try alternative medicine.
– research/apply for financial aid.
– change my diet.
– stop drinking.
– not inflict self harm upon myself.

Seek support
Speak with your Doctor, a Counsellor, a chat site, or call a helpline.
Read a self-help novel. Reach out to family or friends.
And best of all, WordPress has one fantastic Support Group of people who are also suffering, and who WANT to speak to you! Reach out to our little community!

Which brings me to my last, and first, point:

Don’t let your illness define you.

Who are you WITHOUT the illness?
Are you a writer? A mother? A husband? A reader? A baker? An Accountant?
What are your talents?
What are your interests?
What is your favourite meal/movie/colour?
What brings you happiness?

Now, list five positive traits about yourself – yes, right now.
Here, I’ll start it off: I am Confident, Creative, Honest, Leaderly, and Lovable.

And remember, you are not alone.