insomnia

Defining “normal”

I have recently come across many posts where sufferers write about how they long to be “normal”. In a few of my posts, and most recently, I too speak of that longing for a norm.
I guess what I truly long for is familiarity, because when I fell ill I also felt like I lost a huge chunk of myself to the illness.
You may feel like you are not a whole person anymore. You might be embarrassed or ashamed that you have an illness. It happened to me, as I’m sure it has happened to you. It isn’t your fault – it’s inevitable.
It leaves you wishing to be normal, but when you think about it, what really is “normal”?

Google defines normal as, ”conforming to a standard; usual, typical, or expected”.

Is there only one standard that Google, and society, is referring to?
What do YOU think of when I say normal?
Is normal being able to be active?
To have the freedom to study, travel and work?
Is it being illness free, or having an illness?
Agreeing with others, or voicing opinion?
To be heterosexual, transgender, gay or lesbian?
Is normal being married, single, in an open relationship?
To do the things we were once accustomed to doing?
Or do we each create our own idea of what is an acceptable norm, and what is unacceptable?

I know when in school, there’s the longing to be popular.
In cases of Body Image, people long to be skinnier. You rarely hear of someone saying, I wish I was heavier (although, I’m apart of that rarity as I’m sitting here right now wishing my body would put on weight rather than lose).
Perhaps in our case (the chronically ill), “normal” means “healthier” or “happier”.
I know that when I say that I want to be normal again, I really just want my health to return, and that familiarity I used to have every day.

I’m still finding it hard to adjust to this illness and how it has changed my life so quickly. I am unable to work, drive, and struggle to be independant like I used to. The illness has restricted me, and on some days it leaves me bedridden. I’m struggling to accept the fact that I am actually this sick. Sometimes I wake up and think that I can go back to work with the kids, or hop in my car to go for a drive… That obviously isn’t the case anymore.
Instead of accepting the fact that I have a new norm, I waste time worrying over the wrong steps I took to possibly get to this place, hating myself and I guess, trying to blame someone or something for changing what I was used to.
Maybe that’s the harsh reality of it all.
Maybe we are all meant to be different.
Maybe we are too afraid to accept change in ourselves and our lives.
Maybe we don’t like the fact that the change can be a disadvantage.

Maybe we are too proud to admit that we as humans, have flaws.

Maybe there really is no such thing as “normal”.

How do YOU feel?

Someone asks, ”how do you feel today?”
I feel…
Frustrated, with my body for not revealing answers.
Disappointed, for not being able to be ‘normal’.
Angry, at the term ‘normal’. What is normal?
Ashamed, of myself for not being strong enough to win.
Dominated, by the dizziness and being unable to walk alone.
Defeated, by my own brain.
Challenged, by the nausea.
Nauseated, by my stomach not digesting.
Cheated, by Luck.
Hopeful, of finding a way to manage all of this.
Fortunate, to be supported by family and friends.
Envious, of those who get to travel, study, live.
Obsessed, with finding answers.
Troubled, by negative thoughts.
Crushed, by reality.
Stupid, when the tests come back ‘all clear’.
Optimistic, that one Specialist will be able to help me one day.
Nervous, about the future.
Thankful, for the good times.
Unattractive, because of the changes in my body.
Brave, for battling for so long now.
Exhausted, by the illness.
Behind, in my life plan and dreams.
Longing, for relief.
Loved, by few.
Powerless, to the Insomnia.
Confused, as to what I’m meant to be feeling.
Powerful, for crawling through Grocery aisles.
Inspired, to spread awareness and provide support.
Sympathetic, to others who are suffering.
Pained, by the weakness in my body.
Skeptical, of all of the specialists and their theories.
Isolated, from society.
Fearful, of what is to come.
At war, with my mind.
Motivated, to continue to fight.
Tempted, by the darkness.
But my voiced response is…
I feel okay”.
How do YOU feel?

This post was lucky enough to be reviewed by jman1993. It is the first review for Indisposed&Undiagnosed, so make sure you have a read and be sure to have a look at his other posts whilst you are there!

Thoughts of an Insomniac.

I can’t fight anymore.
You have to.

It’s too hard.
In hardship comes strength.

This illness is too big for me.
Everything is too big; you are so little.

This isn’t fair.
I know, I know.

Will I ever work fulltime?
Who wants to work fulltime anyway?

Will I ever go back to Childcare?
You can babysit instead.

Will I ever finish my course?
We can try and explain the situation.

What happens when the Government cut me off?
We will fight them.

Am I classified as Disabled now?
It doesn’t change who you are.

Will I be able to eat at a restaurant?
We can bring a takeaway container; no waste.

Will I ever go on a date again?
We will be creative.

I am afraid.
I will hold your hand through this.

Will I ever get married?
Why can’t you?

Will I ever have children?
I think your reproductive organs work.

Will the nausea ever go away?
We will try everything.

Are there others like me, out there?
We will find them.

But I searched…
We try again.

There is no positivity behind this disease.
We will spread awareness.

There are too many bad days.
There are some good.

 I am too small.
You are small, but strong.

 I don’t want a feeding tube.
We won’t get one.

 I want to live painfree.
We will manage this.

 I can’t sleep.
Please put the phone away.

 Will I ever walk alone again?
We will train Brain somehow.

 I am so dizzy.
You can hold onto someone.

 Will I ever see the world?
We will travel one day.

 I can’t do this.
You can.

 I hate myself.
You are still beautiful.

 I want to leave.
You are upset, overwhelmed.

 How will I leave?
We are not doing anything.

 Will they miss me?
We aren’t going anywhere.

 Will they come to my funeral?
We haven’t died.

 Will someone try to change my mind?
You have a family who love you.

 Will they feel guilty for not being here/supporting me?
We don’t need them.

 I feel so alone.
You have a few friends, a family…

 Everyone is moving.
We are resting.

I hate this incurable disease.
I know.

 I hate you, stomach.
I know.

Then let me go, please let me go.
No, we’re not finished here yet.

 I can’t fight anymore.
You have to.

 

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.

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.

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.