Theories of Love.

A conversation between my Doctor and I:
Him: “You need to allow yourself to relax and be loved. Do you understand what I mean?”
Me: “I cannot relax. I am losing my memory, my vision and ability to think, and…”
Him: “Be loved. Relax and be loved. Do you understand that?”
Me: “Sex?”
Him: “I meant more of a massage by…”
Me: “Oh, I’m seeing my Acupuncturist this week and he can massage out my…”
Him: “No, stop. More intimate than that. To feel another’s touch, to walk and hold hands, to feel the person you used to be”
Me: “How, when all I know is the person that I am now?”
Him: “Look up the 5 Love Languages and take the test. Find out where you fit and then allow yourself to be loved. Illness has consumed your ability to feel, so try and not think about the illness. Think about your feelings”
Me: “Is this some positive-thinking-and-you’ll-feel-better-crap?”
Him: “No, trust me”

As noted in one of my previous posts, my Doctor requested that I take a trip away and allow myself to “relax entirely and be loved”. He was ripping his hair out too; hence the ‘break’ that we desperately needed to come back cleansed and start over.
My Doctor and I have become very well acquainted. He knows that I have been struggling financially, am ripping my hair out over my new neurological symptoms and have just had my heart absolutely pulverised by the Polish Meat Beater.

I have felt heartache before, but nothing like this.
I am naturally a carer, a lover, a giver. I gave all of myself to this creature who I thought was perfect, and he stripped me down and made me feel worthless. He was my best friend, and we had history, a spark like no other. It was a build up over many years, and when we were finally each other’s I had never felt happiness or contentment quite like it. We spoke every day. We shared secrets. We knew each other better than anyone else.

Everything was perfect, until it wasn’t.

I was called a Peasant, and he brought my family into the picture also referring to them as ‘lower grade’ after they welcomed him with open arms. I was suddenly unintelligent, that I would amount to nothing in my life and that nobody could ever love me with this illness. Coming from the guy who I thought was my true love, I was beyond devastated – anyway, lets get back to the story.

I left my Doctor’s room mostly confused, and slightly irritated.
I had loved perfectly fine before, but the illness had not helped.
It’s incredibly hard to have a relationship with someone and be sick.
I grew to realise that a partner will always feel the need to tread carefully around you in case you snap, which you will.

It’s a vicious cycle of anger, love, anger, love, and it’s not at all your fault;
Hold me, no don’t touch me.
Kiss me, no I feel nauseous.
WHY DIDN’T YOU HUG ME?! No I’m in so much pain.
I want pasta, no I want salad, no wait I want nothing.
I don’t know how to feel, why don’t you love me?

After my episode with the Polish Meat Beater, I felt defeated.
I didn’t want to hold hands with anyone, or ‘feel another person’s touch’. I was quite happy to never have sex again and isolate myself from the male gene entirely, and then it hit me like a tonne of bricks. I had built up a pretty high wall to protect myself, and all of the energy I spent on loving others… loving him, was now spent on my illness. I was on a constant speed to ‘get better’; take this medication, take another one, eat and eat until hopefully my stomach will just give in and let me have peace, go to this appointment, book that appointment, who else do I see?
My day was solely made up of illness crap.

So, I went home and researched the Five Love Languages that my Doctor spoke of.
I usually don’t buy into stuff like this, but what I found was incredibly intriguing and it actually… made sense.

A man by the name of Gary Chapman wrote a book in 1995 suggesting that Love was made up of five parts, in which he called the Five Love Languages; gifts, quality time, words of affirmation, acts of service and intimacy.
We each have one primary and secondary preferred Language in which we preach. He makes it known that these Five Love Languages exhaust each human, and that we cannot be truly at peace with our partner or ourselves unless they match or meet our primary Love Language.
For example, one male partner may believe that gifts are of importance to show love, yet the female believes that intimacy is more of an importance. An automatic roadblock has been created, because whilst the male partner is waiting for gifts to be received, the female partner is waiting for intimacy. Okay, so the male partner buys the female woman a gift – the female would prefer intimacy. In order to love wholeheartedly, an ideal partner would have to understand how you need to be loved.

In order to truly discover your Love Languages, one must “observe the way that they express Love to others, and analyse what they complain about and request the most”.

We use all Five Love Languages in our every day lives, some more than others. We mostly use them when we are hurt, emotional and for apologies.
The books summarises that a person will naturally give Love the way they wish to receive it, and if two partners are on different wave-lengths, they will usually have more difficulty within their relationships. Chapman does make it very clear that this theory does not mean that two different Love Language Partners are not a ‘match’. The theory just suggests that until you both exercise the idea of each other’s true wants and needs, you will not love fully.

If you are anything like me, and you have barricaded yourself behind a wall of cement, or maybe you and your partner are going through some communication difficulty, this test is a great step in the right direction of understanding Love. Once you are aware of what you need, you will be better connected to yourself, your current partner, and more cautious when choosing a future partner.

It also made me think about my illness. My Illness has changed the way I love, and want to be loved. My results would have been very different if I took the test a year ago, because I was unappreciative and saw life in a different light. I realised that it doesn’t matter if I am sick – I can still be loved.

My results left me with a sense of empowerment. I felt as though I regained immediate control of how I want to be Loved. I will now be extremely cautious of who I share my heart with. Love is a deep connection, and we each deserve to feel it, but after taking this test I want to feel it the right way. Don’t be with someone who cannot meet your needs and makes you feel unimportant.

I want to be loved entirely.

I am eager to purchase the entire novel, as the website only gives you a snippet of the material.
Society summarises Love as one feeling; you either feel it or you don’t. Well what if some do not know how to feel it?
This post has taught me is that Love is made up of many different levels, and that there are many ways to Love. It is not as simple as just loving.

If my post hasn’t convinced you, just take ten minutes out of your day to take the test. It’s definitely a breath of fresh air from focusing on my symptoms.
Don’t overthink the questions. Some of them will definitely play on your thoughts. Just be natural; the first thing that comes to your mind.

Enjoy,

C, xo

LL VI

Painted,
is my wall,
with your fingerprints;
a canvas of your presence in my bed.

Battered,
is my heart,
with your beatings;
a punching bag torn and sewn with thread.

Riddled,
is my mind,
with your promises;
a distortion of an eternity together.

Opened,
are my wounds,
with your bare hands;
a hole left to rott forever.

Degraded,
is the feeling,
you instilled in me;
a confidence now enveloped in shame.

Faded,
is my colour,
with your darkness;
a failure with no-one else to blame.

Shallow,
is my breath,
with your grasp;
a strength I am unable to free.

Gone,
is my worship,
of your soul;
a future of love without me.

LL V

My sheets still have your scent scattered all over,
So I stripped them clear in attempt to wash you away.

My neck still tingles from where you planted the softest of kisses,
So I scrubbed away your lips until my skin bled.

My body is marked from your bites and nibbles,
So I concealed them from the judging eyes of others.

My desk is the haven for each thrust and moan,
So I sheathed it with tissues soaked from crying with ache.

My fingers were left open for yours to fit perfectly,
So I clenched my fist until it went numb.

My eyes captured your loving gaze in a picturesque moment,
So I closed them in hope that the black shadows would blind me.

My kindness was served on a gold platter and abused,
So I was forced to be selfish and never trust a soul again.

My memories are tainted with your intimate words,
So I blocked them out by repeating your falsities.

My heart beat loud with your name engraved into its tissue,
So I cut deep into my flesh hoping I’d stop it from beating.

My breath was steady when you flashed that gorgeous smile,
It is now erratic and accompanied by chest pain.

My stomach once held an enclosure of beautiful butterflies,
Then the bile rose and killed off each and every flutter.

You promised me the world but left me in pieces,
So I picked up each fragment and rebuilt what you broke.

When your support system fails you.

Chronic Illness is terrifying and traumatic for the person who has it, but apparently it is as equally traumatic for our support system and results in many of them not being able to cope and disappearing on us.
I suffered for many months alone before someone contacted me to offer support. In this time I experienced many traumatic things on my illness journey, things that would have been good to talk to with family and friends. I didn’t have a support network back in my early days of illness, and nobody should have to face it alone. So please, if you are newly ill or experiencing hardship, please reach out to someone if you are unable to talk to friends or family.

I should have reached out to a therapist a year ago, but instead I battled alone and held in all of this pain and suffering from the dramatic lifehange. I sat back hoping that my closest friends and family would be there to support me, but it took months before they did, and not all of then ended up by my side.

An incident happened today which has prompted me to ask the question below. I had a very close friend of close to nine years who has silenced me since getting ill. She became busy, didn’t have time, didn’t care. So, I (right or wrongfully) approached her and let out my feelings of disappointment and let down, as I have learnt not to hold onto feelings and let them eat at you, and it escalated into the usual hurtful comments about my illness, Facebook delete and the good old’ “don’t message me again”.

What is one of the inconsiderate, uncalled for (and possibly downright nasty) things that your supposed friends, loved ones or Doctors/Specialists have said to you along your Chronic Illness journey?
Please share below.

We are dealing with so much in our lives already, but society assumes that we are; exaggerating or weak, which results in having a bunch of these idiots throwing their opinions and ideals into our lives, telling us how to live and what is right and wrong.

I was told that my illness has indeed defined the person I am today, and that I also need to be better than the illness and not weak; that I use the Illness Card as a victim card.

See, this is what is wrong with society ^

And this was coming from someone who I have spent a lifetime with and who was meant to care for me.

Take a walk in our shoes and then tell me how you feel. You unfortunately lose a piece of yourself to your illness but that does not mean that you don’t try your absolute hardest every day, even though you might miss lunch with a friend, or a birthday, or work. It is NOT an excuse or an “illness card”. It is the way it is. You/we are doing the best we can, under the circumstances that we are in, and we shouldn’t be quiet about it.
And it is a shame that the people who surprise us the most are those within our support group. They don’t seem to understand how hard it is for us to struggle each day, and they expect us to get up and just face the world with open arms like they are able to. If only they had a glimpse of what this feels like, and the loneliness surrounding hardship, so they would understand entirely. Then I am certain that they would think before spitting out the harsh comments.

I have received it from Specialists before, but not from people who are meant to be apart of my support network, to which I received today.

We don’t deserve treatment like this. We deserve respect, and if we sit in silence we will not be heard.

Stand up for yourself and know that you deserve better, whether it’s a smartass Specialist, a disrespectful friend or even a family member who thinks they know your body more than you do.

Protect yourself first because I assure you nobody else will.

LL III

He lies beside me,
Heavy eyes,
Limbs tangled,
Hands entwined.

His voice murmurs,
Deep and delicious,
In between bouts of sleep haze,
I love you.

I whisper in return
Ever so softly,
the three words,
That keep us from breaking.

I love you.
I do not blink.
It is not to he whom I speak,
It is to the love tainting my mind.

He lies beside me,
Limbs tangled,
Hands entwined.
I am wishing it was you.

A Letter to Myself.

Dear Self,

Today is one of those bad days.
You are curled up into a ball on the floor; your tears soaking into the carpet. You are crying so hard that you heave, and you cannot bear to stand up with a fear of falling straight down. The nausea is really bad today, and you have tried everything to relieve yourself from it, with no success. We have gone from eating consistently, to not eating at all.

You are planning your Goodbye Letters in your head, and you are telling yourself that you cannot go on another second with these symptoms.

You want to feel nothing, for once, instead of everything.

You have every right to feel this way.
Life never used to be like this.
I remember when things were much simple; where you had the strength to work ten overnight shifts in a row, and overtime. Night was day, and day was night.
They asked you to work on your day off, and you said yes every single time.

You worked when you were sick, and you worked when they weren’t even paying you to work.

The days went quickly and were jam-packed.
You were driving, going on roadtrips, Sunday breakfast dates, shopping days, you slept on the beach and woke up covered in sand at 3am. You were eating as you pleased, and had a bright future in mind for yourself.

You smiled more back then.

I guess you, nor I, ever imagined that something like this could happen, and that things would drastically change in the blink of an eye.

All of the things you used to worry about – not having enough money saved, having to work, being late, the petty little arguments with people – none of it matters now. We have been faced with bigger problems.

I know your mentality is being compromised, and you think it is easier to leave and give up, but I need you to stop for a second and just breathe.

I need you to see what I see.

I see strength.
I know you hate hearing that, but you ARE strong.
I can assure you that most people would not cope as well as you are with chronic nausea, stomach pain and dizziness; not to mention being stuck behind four walls, losing your job, the endless appointments and tests, and lack of answers…

I see someone who still manages to put others before yourself.
I see someone who can still laugh, even on the crappiest of days.
I see someone who is ambitious and continues to push their body to strengthen, no matter how weak they feel.

You say that you have made no accomplishments this year, but my dear, grief has clouded your vision.
Pre-illness-you could only make toast.
In the time you have been off, you have learnt to cook many meals and desserts… things you would not have had the patience for before.
You stress less about the smaller things, whereas before, you were one giant walking stress web.

Six months ago, you couldn’t get out of bed and you were eating zero day in and day out. Today, you are walking better, and for most days, you are able to eat consistently.
You may not have travelled, you may not have graduated, you may not go out partying every week or go on adventures with friends, or be working in your dream job, BUT you have grown up quicker than most people your age and I promise you that you are wiser than they.

You appreciate the smaller things that they are too busy to see, and once all of this is over, your love for life will be greater than your hate for this illness.

I am amazed by your ability to function with these symptoms.
I am astounded by your bravery, and wish you could see how much inner strength you have. When we beat this, not if, I hope you know that you can face anything thrown your way.

I know that the symptoms have prevented you from driving, travelling alone and engaging with others, but it does not for a second mean you are selfish, lazy, weak or a disappointment.
Stop wasting your time on the people who are telling you this; the ones who don’t message you back, or make you feel unimportant.

PLEASE, stop telling yourself that you are unattractive.
Your body has been to hell and back, and considering, I think you look quite good for a sick person. You have fat on your body now, rather than being riddled with bones. Your skin may have changed, and your hair is frail and falling out, but you are still beautiful.
You are measuring yourself up to people who hide their average features behind a veil of makeup.

Now here’s a touchy topic…
You better still be listening.

You are sitting there, feeling sorry for yourself, alone, and struggling to see how someone could love you with this illness.
And you are actually repeating to yourself, “how can somebody love me with this illness?”

Nobody loves you any less. Your true friends and family know who you are and that your illness unfortunately dims your light.
They might not know what to say at times, but I promise they want you to beat this as much as you do.
And, they will help you if you simply ask for it.
They want to see that smile reappear, as much as I, and they will help you in any way that they can.

Don’t listen to anyone who has told you that you are a burden, unlovable and will be alone.

You ARE loved, and you ARE lovable whether or not you have this illness. There is someone out there who doesn’t care about driving you to appointments or waiting with you through tests; someone who will listen to you cry on the worst of days and give you a reason to smile; someone doesn’t mind if you have to stay in for the night instead of going out, and would be happy to link arms with you when you are dizzy; someone who will lie with you when you are feeling nauseous, and give you massages when your body aches; someone who knows what you can and can’t eat, and who will do thoughtful things for you just because.

You WILL get married, move out, and one day you are going to be a wonderful mother who knows the ins and outs of the medical system (and you will definitely need to know that if you end up having those three boys you are dreaming of…)

I know today is hard, and I know the past few weeks have been hard.
Do what you can, and if you have to cancel on someone to rest, then so be it.

I know you are tired of making progress and then falling backwards time and time again.
Do not feel like you have to justify yourself to anyone, or come up with answers that you don’t have.

I know that today you are struggling to find a reason to stay, and I know how alone you feel.
Do not let the anger consume you.

I know that you fear this is neverending, and you’d like to end it all yourself right now.
Do not feel rushed to achieve all at once, or to get better.

I can feel you clutching at your last straw.

We may never reach 100%, remember.
We may never receive the answers we are desperately seeking, but we must continue to try.
We still have Specialists on our side who still believe.
Medicine is only advancing.
We still have some time.

If anyone can do this, it’s YOU.
We’ll take it one step at a time, I promise, and if nobody wants to come along for the ride, we will always have each other.

Love from Me.

Are your “followers” really “followers”?

A conversation with my best friend today has sparked this blogpost. We were reminiscing about the past, which brought up the issue of past friendships which had either been lost, or were currently in limbo.

Have you ever looked at your Social Media Friend Count? My reference comes from Facebook, but WordPress is included, Instagram, Twitter…

How many of your “friends” do you actually converse with on a daily or weekly basis?

My first example is WordPress. I have close to 750 followers, but how many of you actually read my posts? How many of you are culprits of scrolling down the newsfeed and “liking” posts without really reading them? How many of your followers do you actually speak to?

I know that I speak to more Bloggers than I do “friends” from my every day life.

Which brings me to example two:

Since being ill, I made a new Facebook. My friend count is 130. Approximately twenty of them are family, fifty of them speak to me once every six months and then think they have done their duties and go back into hiding, the other fifty have never said a word to me. I’m not sure why they have kept me, or I kept them… which leaves ten of them who I speak to daily or weekly.

Ten, out of a hundred and thirty.

And, my “friend” count is quite small.

This illness has opened my eyes to many things.

I now know the difference between those who truly care, and those who pretend to or don’t have time to.

What happened to people genuinely caring?

Is it too hard for someone to take twenty seconds of their time to contact you? To message or call? ESPECIALLY during ill health?

Why, with time, do people become sloppy with maintaining relationships?

Is technology to blame?

Is time to blame?

Are we too busy behind our screens, or with our own problems, to worry about what is surrounding us?

Or are people just… selfish? They prioritise what is important to them and maybe we just don’t make the cut?

I often wonder if the tables were reversed, how they would feel during a rollercoaster like this one.

I know I would offer my support in any way that I could, check up on them as often as I could and remind them that they are not alone… but my heart is big and I am selfless.

Can you safely say that you speak to more than fifty percent of your social media followers?

Do you think that you give more than you receive?

Chronic Illness Realisations.

There is a struggle to accept new norm.
I am at war with my mind, every day.
I cannot accept the fact that I have an Invisible Illness, or that it cannot (currently) be managed.
I cannot accept the fact that this is my life now.
I feel like I am having the same nightmare night after night, and haven’t woken.
Accepting this, makes me feel helpless… as though I have reached the end of my story and the illness has won.

Doctors are only good when dealing with black and white.
If you have a concrete diagnosis, then Doctors are probably able to offer assistance.
But hand them months of tests and mystery results, and they have no idea how to treat you and become less compassionate to your situation.
It is frustrating for us, but isn’t their fault. Our condition probably gives them anxiety as their hands are tied when it comes to treating us.

Depression and Anxiety are inevitable.
We are coping with a lot during this time.
It is natural to develop Anxiety and Depression somewhere along the way.
We have a right to feel anxious and saddened.
Most of our lives have been turned upside down.
But it is important to remember that your Depression and Anxiety are not solely your illness.
They are underlying… symptoms even.
Your Chronic Illness led to the development of your Mental Illness.

The body is fragile.
I underestimated the ability of the body to crash, and to heal. I had a small cold, or viral infection, and I would push myself to work, to study, to go out.
Those days seem a mile away now.
My body is weak, and if it were to get a viral infection now I fear it would take weeks to recover.
I am not as strong as I thought.
All of the rest and vitamins in the world, would not rid me of this illness.
We are fragile creatures.

The world does not stop whilst we are ill.
We may feel as though we aren’t moving, but we are. We are growing older each day… but our motions aren’t changing.
We aren’t achieving, we aren’t earning.
It’s like having our feet cemented in concrete. I can move my arms, think, see, feel. But I can’t walk to the end of the block. I can’t break free from the hold. Meanwhile, people are continuously passing…

People have more time to pass judgement than to offer assistance.
I, as I’m sure you, recieve a lot of opinions from people in regards to my illness, and what I should be doing to “make a full recovery”.
I cannot comprehend how people have the time to voice their opinions, but cannot use thirty seconds of their time to giving us a phonecall, or sending us a thoughtful “how are you feeling?” message.
The way I see it is you either have time for me, or you don’t. If you have the time to tell me about the herbal remedies your great grandmother passed down to you, and that I should try to go to a Gym, do Yoga and eat more – then you have time to ask me how I am or pay me a visit.

Relationships are much harder to manage.
I don’t know how couples have time to be romantic or work on their relationship when one of them is chronically ill. Maybe I haven’t found the right person yet.
Chronic illness puts strain on relationships – romantic or non. I find myself being forced to only worry about myself, and that is a hard thing to do. I also find that the partner must focus more on being a financial aid and feels as though they wear the burden if being the main punching bag for my rollercoaster of emotions.
Partners feel neglected, unable to cope with the changes. They also may feel like the person they were with at the beginning, is now gone.
The partner has to be prepared to take on a little more of the weight, which is unfair.
The cycle spins – love, pressure, frustration, anger… until finally there is a natural drift between the both of you, and neither parties have the slightest energy to go on.

There is, though, a rare handful of people who have found that one who accepts them with their illness and battles alongside them. They have a plan that works. And to those who have found these special, supportive people – I am happy for you, and I’m indeed envious.

We have to be our own best friend.
I’m not going to lie, I hate my body… I hate myself since being ill. I am not happy with my appearance, my mindset, my struggle to heal.
I am angry.
But, who really understand this illness?
Who has to live through the symptoms?
Who knows you the best?

You.

We are alone most days… so, you might as well begin to like yourself at least, seeming as you are the only one who can fight this, and you will be spending a lot of time together.

We take too many things for granted.
I have a lot of time to think, and therefore I have a lot of regrets.
I have taken large and small things for granted.
If I get a second chance at good health, I know I will do things the right way. I will take care of my body during infections, I will travel, spend my time with those who truly love me, spend more time with my family, not stress as much and make the most of every second.
I will change, because I see how much I have lost now, and I feel soul-less.

How about you?
Have you had any different realisations since being ill?

Friendship in the face of Chronic Illness.

One thing that my Invisible/Chronic Illness has allowed me to see, is the world in a new perspective. My life is no longer about the petty problems I faced years ago, and the superficial crap. In spite of all of the symptoms and pain I must face each day, my time and energy is now purely spent on keeping my stress levels at a bare minimum, managing my symptoms and surrounding myself with supportive and understanding people.

Chronic/Invisible Illness is a funny subject. Once you announce that you are suffering, (or they hear along the grapevine) you are suddenly bombarded by people contacting you.

I refer to them as the Prodders, as they literally begin mentally/emotionally prodding you; questioning, encouraging, pushing, reminding, assisting, annoying, hating, etc.

I have put them into a relationship wheel will that comprises of four categories:

Permanent Prodder:
The friends who never really left to begin with.
They:
– contact you frequently
– try to understand your symptoms
– send positive encouragement
– convince you to keep fighting
– are loyal regardless of the situation
– offer to assist in any way possible
– pay you visits voluntarily
– preoccupy you when they know you need it
– don’t pass judgement
(They are the Keepers, and I can safely say that I only have four of them in my life)

Reappearing Prodder:
The ones who you haven’t spoken to in five years, and send you a message to let you know that they are suddenly thinking of you and are there for you. They are usually 85% of your Facebook friends. Look, I appreciate hearing from anyone, but with some people in this category, I often wonder if they really care? Or if it is just an act of kindness out of guilt. They contact you in case the illness gets the better of you, and they simply need to clear their conscience of all that happened in the past. If it is someone you had a falling out with/drifted from, Illness makes you realise how petty it all was to begin with, and I would like to think that this would be the perfect chance to make amends.
I don’t have to feel guilty anymore because I messaged her saying, “I hope you are okay”, “So sorry to hear of your struggles”, “I’m here if you need anything”.
But are you really there for me? Or will I most likely never hear from you again?

Occasional Prodder:
The ones who contact you with a message that makes you question why you were friends with them to begin with. They are the ones you went to school with, spent every day at work with for a few years, the friends you usually had the most fun with. They are usually the ones who send you the half-hearted messages – the memes, random photos, rants about their ‘oh-so-big’ problems in life. They whinge about their fulltime job, or going out every weekend and being ‘oh-so-tired’. They have all of the time in the world to speak about themselves, but not at one point do they ask you how you have been/how you are/if they can be of any assistance. It’s too much of an effort for them. And don’t bother trying to talk about yourself, because I’ve tried that, and somehow they revert the conversation back to themselves.

Disappearing Prodder:
In my case, I’ve had a few of these. One in particular. We spoke every day at a routine time. They understood me in a way that nobody else could.
They are the ones who swore that they would be there through anything. The ones you have probably helped more times than you can count. They probably know you are sick and have been along for most of the ride, and then suddenly, you don’t hear from them anymore. It’s as though your illness has hit them all at once, and it is more pressure for them, than it is for you. They can’t find thirty seconds in their day to reach out to you, and they most certainly don’t have the patience to listen to you talk about your illness or feelings anymore. They can’t put aside any differences you may have, and simply be there anymore. They don’t know how to handle it, and disappear.

If you don’t know if your friend is alive or not; if you don’t remember the last time you heard from them; if you know they are going through a rough time, NOW is probably the time to send that message or make that call. Its not hard. I don’t need you to be here every day.

I don’t need you to feed me, dress me, take me anywhere (unless you offer). I don’t want to have an entire conversation based on my feelings and symptoms. All I’m asking for here is a little consideration and support.

If you can’t be there for me at my worst point, and if you don’t think I’m worth staying in contact with simply because I am ill, then why should I want anything to do with you?
Whether I’m ill or not?

Because, I have a very big heart.

I struggle to find a balance between forgiving people and realising how much they have hurt me by choosing to leave.  I find myself “settling” and allowing these people to crawl back into my life – instead of telling them that what they have done is NOT okay.
You should be there for someone if they are strapped into a rollercoaster like this one!

I truly hope that something awful like this illness doesn’t creep up and surprise you one day, because you will unfortunately be faced with the same problems as I am. Unlike you, I am the type of person who will probably still offer you support and guidance. Shame on me, hey?

This illness is 90% a burden, and 10% a blessing, because it has taught me to grow up, to see how small the problems I used to face really were, and to realise who my true supporters are.

To quote the finest Miss Monroe:
I’m selfish, impatient, and a little insecure. I make mistakes, I’m out of control, and at times hard to handle. But, if you can’t handle me at my worst, then you sure as hell don’t deserve me at my best.

Parents in the shadow of illness.

Thank you for sending through your ideas for my next post.
It was extremely hard to choose from, until I came across a response from a mother, and I knew in my heart that this was the one I had to write.
We hear stories of the teenagers and children going through Chronic Illness, Depression and Anxiety, but rarely do we hear from behind the scenes.
So, thank you to https://perfectlyimperfect05.wordpress.com/ for choosing today. I will try my best to do this topic justice.
Please take the time to read her inspirational work.

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The first time I was seriously ill and hospitalised, I was about eleven or twelve. I had been complaining of stomach cramping for weeks, nausea and bloating. My parents just assumed it was a mild stomach bug. They pushed it aside. I woke up one night, though, on the floor screaming and my parents rushed me to the emergency room immediately. 
I remember the night clearly. The nurse unveiled the curtain and whispered to my parents, ‘the doctor would like to have a chat to your daughter alone’. I hated hospitals back in the days, just like any other child. They were white, gloomy and terrifying. My parents left the room, and the doctor came in. There was no time for introductions, he just cut to the chase.
“Are you being neglected by your parents?’
’
“Are you being starved?’
”
“Are you being abused physically or emotionally?’
’
My answer was obviously no, but he didn’t believe me, nor did he believe my parents. What we learned later on was that I suffered from severe Irritable Bowel Syndrome, and I was losing weight drastically because my stomach and bowels were holding onto food for long periods of time. I didn’t feel the need to eat.
And, somehow, I ended up in an Adolescent Clinic for children and teenagers who suffered from emotional or physical abuse, with a diagnosis of ‘Borderline Anorexia’. Every meeting I had with my counsellor, I was interrogated about my parents and brainwashed into believing that I was mentally ‘doing this to myself’ or that they were doing it to me. 
And after every visit, I ran back to my parents and told them everything.
Obviously, we didn’t stick around there for long.

I remember speaking to Mum about it a few years later, and asking her if she remembered, and she said it was the worst moment of her life. She couldn’t understand how someone would believe that she would want to hurt me. She said that the most hurtful thing is when someone attacks you for being a supposed bad parent.

When I had Glandular Fever, I remember my Mum feeling so helpless – my symptoms were so severe. I just lay in bed every day and night, shaking with high temperatures and there was nothing anybody could do to help me.
When I was diagnosed with Grade II Oesophagitis, they were broke just trying to keep up with my medical bills, trial medication and diet change.
Then there were the Shingles, twice, which left me bedridden once again. My neck glands had swelled to the size of golfballs, and I had excruciating nerve pain. My Dad tried to make me laugh as much as he could.
When I had my Laparoscopy last year, my body didn’t heal as quickly as it did the first time. She let me sleep in her bed for weeks, as night after night I screamed in pain. She would stay awake with me, and for each time I told her I couldn’t do this anymore, she told me that I could.

So, with a few brief memories there, you would already know that growing up, I have unfortunately always suffered from a low immunity and had DIAGNOSED illnesses. I often wondered if they regretted having me, because I seemed to cause an array of problems for them.
Late last year though, my health rapidly deteriorated. I was so sick, and off work for months at a time and not ONE specialist could find anything wrong with me. I was complaining of vertigo, not being able to eat, nausea, insomnia. I was weak at work and catching virus, after virus. My parents took me to appointment after appointment, and sat with me as every person came back and said ‘your results are all clear’.

There was one night where I cried so hard about feeling like a failure and that nobody (not even my own parents) believed me, that I gave myself one serious blood nose.
My partner was with me at the time, and there was blood all over my bed, his jumper and the floor. I held my hands over my nose, but the blood had trickled down my chin and onto the floor. I had created a small blood spilled pathway from my bed all of the way to the bathroom. It resembled a murder scene. My parents came home in the midst of me crying over a sink of running water, blood stained handprint on the mirror and basin, and my partner trying to soak up my blood from the carpet with wet paper towels. I could hear them whispering as I cried. She just won’t stop crying, he told my Mum. I don’t know what to do. My Mum has never been good with blood, so I clearly remember my father entering the bathroom with a cold flannel and he put it on the back of my neck. I (stupidly) tried to breathe through my nose, and a large blood clot flew straight up my nasal passage and into the back of my throat, making me dry retch. I (again, stupidly) opened my eyes and there in the sink was the same blood clot.
My Dad passed me tissues and patted me on the back. He left and returned with an icepack for my neck, and then went to my Mum and Jason, and I looked into the mirror. My face was covered in blood, which had dried at the corners of my lips and the tip of my nose. My Dad had never been so… hands on with me before. I felt like a baby bird with a broken wing.
I knew it was coming. They sat me down for ‘the talk’.
I had had their support for years, but today was different. I could feel it.
“You need to make lifestyle changes”, they told me.
“How do we treat something that isn’t there”
“We don’t know what to do”
“How do we help you?”
“Eat. Just please eat more. You have to eat more”
“We can’t see you like this anymore”
And just like that, they had reached their breaking point.
Their faith in me had diminished and it was only then that I realised how much suffering they had gone through and how hurt they were. They had been there for me every step of the way. They had mostly paid for every appointment, every medication, waited through every surgery, procedure and test. They had sat beside me and experienced the same sickness in the pit of my stomach when each practitioner told me they had no idea what was wrong with me. They dragged me along in shopping centres, because I was too dizzy to walk. They watched me lose seven kgs in less than a month. They watched me lose my dream job, and they saw that my usual confidence had completely disappeared. They cleaned up my blood off of the floor, and face. They drove me everywhere, and took countless days off of fulltime work to accommodate for me; whether it was an anxiety attack, an appointment, a day where I needed someone to help me at home.

I was angry with myself.
I had never once asked how they felt through this.
I had never truly appreciated their help, or guidance, until now.
I realised that we all needed to speak about everything – the symptoms, the feelings.
They were worried that they were going to have to bury me.
I had to make sure they knew this illness was serious, but that I wasn’t doing it intentionally.

And from that day forth, we were all on the same page.
We speak about everything now; every appointment, every single thing that each Specialist suggests. We discuss what medications to trial/not trial. We have an Appointment Calendar so we can work around each other. My Mum has trialled some of the natural therapies with me, and my Dad has actually networked trying to find new trial possibilities. They are continuously checking up on me during the day, and are always telling me not to stress because it ‘makes things worse’.
I inform them of every appointment, and we have received help from family and friends so that I’m not always relying on my parents. I have learnt to cope with the symptoms more independently, so on weekends, they have time to themselves and go on day trips and spend more time together alone. I’m not saying that our lives are even close to normal – because they aren’t. I am still struggling, as I know they are; having to watch me go through this. But things are much better now.
We try not to think of the future much, but if it comes up in conversation, my Dad always says, ‘You won’t be like this forever. Medicine is always growing and one day someone will be able to diagnose you or help you manage this”

I guess we have to hold onto something.

To the parents out there – I am in awe of you and forever will be.
I know now how hard it is for you to watch your child experience something and not have the ability to free them from the pain. Don’t give up hope. Talk to your children. Don’t give up on them, but most importantly, don’t lose yourself in the illness either. make time for yourself and your partner and communicate.

To the sufferers – you can sit back and write as many blogs as you like about feeling alone in your suffering and how your parents don’t understand.
Maybe you need to tell them more than once.
Some parents are in denial – not because they don’t believe you – but because they don’t want their beautiful child to have a problem, let alone a serious one.
Please, try.
And if that doesn’t work, try again.