Chronic Pain

Illness Army: “A Neverending Pain”

Chronic Pain was something I had never heard of, knew nothing about or even knew anyone who had it. But after failed Spinal surgery nearly 5 years ago, Chronic Pain seems to be my new best friend. We are now never apart.

I was told I had Degenerative Disc Disease in my lower spine, the area I was operated on, 4 years ago now, and I have learned to live with it, it’s not as bad as it sounds. The word disease freaks you out at first, and so does google, but eventually we all get this, but usually when your older. So it’s not as bad as it first sounds!

Less than a year ago now, I was also diagnosed with Lumbar Spinal Stenosis, Facet Joint Hypertrophy, Enlarged Facet Joints, and Arthritis in the Facet Joints. To go along with these, I have Bursitis in both hips.

Every day is a new day, a new learning curve, it’s a hard challenge. What I did yesterday, I more than likely won’t be able to do tomorrow. And that sucks. Being more than capable of walking 5 years ago, to now not knowing if my legs will support me to take 1 single step, it’s hard, so very hard. I am a determined/ stubborn person and will not ask for help, but what are you supposed to do when you are on the floor in a heap and can’t get up, all because your back has failed you and your legs, and all without warning.

Every day, every minute and second of each day I have a dull throbbing and aching pain, gnawing away at me. Some days it takes over your mind and you cannot function. Then add in sharp stabbing shooting pain, from your back down both legs. Then add a numb left leg (the whole leg). Then add a grinding sensation every time you take a step. Now imagine ALL that on 2-3 hours’ sleep a night.

The one thing I always remember is the look of utter disbelief when you tell a family member or friend what has happened that day, or at an appointment, it’s the look of “I don’t believe a word you say – It can’t be that bad, it’s all in your head”. I never asked to have all these issues, but they are real. Just for ONE person to believe you, would mean the world.

Unfortunately this is now my life. This is what I now have to deal with for the rest of my life. I cannot escape. Being told that they have no more options for me, is not what I thought I would hear so soon. No more treatment, nothing. This is it.

But trust me, there will still be the dark days, many days, when you don’t want to move or even talk. When you want to stay in bed forever and hide away. But what you will learn is a completely new outlook on life. You will find strength and determination you never knew possible. You will manage to cope with things, in your very own way, and that’s ok, just never stop fighting. Never stop. Never give up.

If I can help one person see that their life is not over (even though most days you do feel that way!), if I can help that person believe that they CAN fight, if that one person becomes a stronger individual, then that’s all I need. I need to let people know they are not alone, there are other people in this world, dealing with the same thing. Don’t shut off, reach out – you never know who may be there to help.

The author of this post, Kat, can be found at her blog http://katwilson04.wordpress.com

Kat has been living with Chronic Pain and back issues for 5 years. In the hope that she can help someone else out there with the same issues, she started her blog, to make sure that person knows they are not alone, that there is someone else out there going through the same thing.

If you have a similar Illness story that you would like to share, please have a read of our Submissions Guidelines Page!

Sick Enough.

The Government called me today.
I was, once again, rejected my claim for Disability.
Disappointing, yes, but even more so was the man I was assigned, as he finished our conversation with this (and I quote):

Once you hang up the phone, I’d like you to just sit down and have a real long, hard think about whether you are sick enough to be eligible for a Sickness Pension or Disability Allowance. Just have a really long think…”

I think that this statement sums up what is wrong with every Government worldwide.

HAVE A LONG, HARD THINK IF I AM SICK ENOUGH?

Oh hey, I had a long hard think and I suddenly, (after almost two years of being ill), feel that I am well enough to return to fulltime work and study. I actually feel SO great that I can start tomorrow!
I just needed to go through this year long process of applications and rejections, appointments, tests and letters for one of your employees to tell me to ‘think about my illness’ a little more than I have been doing over this past TWO YEAR PERIOD and realise that I am actually well enough to return to the life I apparently willingly gave up.

Here’s a thought – employ people who have the ability to show empathy towards those who have not CHOSEN this path for themselves – were GIVEN it.
You have my file, which I picture to resemble the length of the pages in the entire Harry Potter Novel Series.
You have every letter from every Specialist, and you know exactly how many times I have called because you have cut my payments or questioned my health.

This entire journey is incredibly stressful – especially the part where you have to deal with the Government. The process should be simple, but it isn’t. I understand that they are trying to prevent frauds from corrupting their system and receiving payments, and I also understand that they are pushing for thousands of people to return to ‘some type of work’ to accompany their therapy and improve their mental wellbeing.
I understand, but what I DO NOT understand is their disregard for the thousands of people who are GENUINELY ill and GENUINELY unable to work temporarily and permanently.

Sufferers are vulnerable as it is, yet we are left on our hands and knees trying to prove to your employees that we are ‘sick enough’, and we are ridiculed and not taken seriously.

Why would I willingly choose to live like this every day? To feel constant pain, and to spend 85% of my time in and out of appointments?
Why would I spend my last dollar on medication and therapy, when it could easily be spent on luxurious items for myself?
Tell me why I would give up my dream job for this new life?

Oh, maybe because I have a VERY REAL, CHRONIC condition?

To the imbecile that I was given today;
I took what you said into consideration and I did have a long, hard think after I hung up the phone today…

and I decided that I will most definitely be reporting you for causing me additional stress.

C.

Let Me Publish Your Story.

Help me, help you, and ultimately help others!

Due to an influx of new bloggers writing about their Chronic Illnesses, loneliness and the lack of guidance and support along their journey, I have created a new segment called ILLNESS ARMY.
Under this tab, I would like there to be numerous Chronic Illness categories with YOUR stories.
I want to connect you with the right people.
I want you to make friends and support each other.
I want your voices to be heard, so we can make it known that Chronic Illness of any kind is not pleasant.

I feel as though I can only support as my much as my knowledge and experience allows me to… so, I am requesting YOUR assistance.

I am in search of honest writing.
As you are writing, you must think about the person reading your post.
If they are newly diagnosed with what you have, how would you prepare them?
How can you support others?

I am looking for new, or old posts, but there are a few guidelines, so please read carefully:
Maximum 1000w per post

Posts can be copied and pasted into an email, or sent as a word document.
You can also email me a link to a pre-written post on your site if it meets the criteria.

ONE entry PER email.

Once emailed, changes to posts CANNOT be made.

Your post MUST fall into ONE major category.
(Please go and have a look at our current dropdown list under Illness Army, on our homepage. If your illness is not there, please attach the name in your email and I will add it to the list)
I understand that many of you will fit into MULTIPLE categories, but please choose ONE that best suits your submitted post, or one will be chosen for you.
I have chosen to select this way as I want sufferers to be linked to the appropriate people for support. If there is a sufferer of Gastroparesis searching for guidance, they will most likely not find it by being in the POTS section).

This MUST be filled out and emailed along with your entry:
Your Name:
Your Email:
Your Blog URL:
Title of Post:
Your Chronic Illness (for the category):
Three Sentences About Yourself or your blog:

Please do not interpret this as a sign off from me. I will still continue to write my own posts about my journey and experiences, directed at a collective audience.
As I am doing this project solo, I will aim to post two of your stories per week (if my health holds up).

If your post meets the criteria, and is chosen to be published, you will receive an email notification.

If you aren’t following me already, then please start today!
Let’s start sharing this post so we can begin uniting sufferers!

You may begin sending your entries via my CONTACT page, or alternatively at indisposedandundiagnosed@hotmail.com
with the subject line “ILLNESS ARMY SUBMISSION”

I am really looking forward to reading your stories.
I think this is a step in the right direction for spreading awareness about our community.

C, xo.

Will You Be My Valentine?

When it comes to Valentines Day,
you are usually one of two people:

The person who sits in a slump,
hidden from social media all day,
because you are single and you don’t want to be inundated with hundreds of Facebook posts from other people gloating about their relationships, overpriced flowers and gifts;

or you are that other person who is on Facebook gloating about your relationship, overpriced flowers and gifts.

Valentines Day is about being thankful for Love,
and spreading kindness…

I’M the person who thinks that this should be done EVERY day.

Love for your friends, family, those who have been supportive to you along your journey, and your partner…

It is also about loving yourself,

so,

my Valentines Day gift to you today is…
one Extra Special Spoon to use on doing something that makes YOU happy,
because YOU deserve it!

Extra Spoons are rare so use it wisely!

wooden-heart-spoon.jpg
If you are having a really awful symptom day,
and/or are spending Valentines Day alone like me;
don’t be disheartened.

Know that I am thinking of you,
and most importantly,
that you ARE loved.

C, xo

Normal-Sick.

My visit to my Doctor today went a little like this…
I drove myself to my appointment up the road, and felt pretty proud of myself considering my body is being plagued by dizziness, fogginess, razorblades in my throat, a phlegmy chest, the usual stomach pain, neck-throbbing, nausea and pre-period bloating.

I notice that he has been moved to a new clinical room, and that the light bulbs are brighter (this is how you know you visit the Doctor way too much; when you start noticing the small things).

Me: “For once, I think I am normal-sick”
*insert coughing spell*

Dr S: “Yay, congratulations!”
*insert usual Doctor check*
“You have a throat infection.
More good news is that you also have a chest infection!
And here is some final good news; antibiotics is a no-go because of your Gastroparesis…”

Me: “Yay?”

I have not posted about my illness in a while, and probably because there is nothing overly exciting to tell. It is so little, I can squeeze it into dotpoints for you:
– I started an antidepressant called Mirtazapine in hope of blocking receptors to my stomach telling me I am nauseous, increasing my appetite, and blocking my pain receptors in my neck. I have been gradually increasing it for two months now, so I should see big changes soon.
– I stopped seeing the Holistic Chiro, as I noticed that the more ‘neck’ exercises he gave me/manipulation he did on my spine, the more pain and dizziness I had.
– I am seeing a Rheumatologist next week for the first time.
– I am seeing an Endocrinologist for my underactive thyroid. Yes, I am supposed to be on Thyroxine but I have cheekily stopped taking it.
– I am still doing Acupuncture with my Herbalist, and we are trying to test new vitamins out.
– I have an extension of my Government allowance until May, and a case officer is reviewing my case anytime between now and May as I fought my rejection of Disability.
– I am supposedly expected to partake in work or study of some sort, part time, midyear (if I show improvements)

The REALLY great news is that Dr S is in the process of putting my ‘mystery’ case forth to a group of very important Specialists at one of the best hospitals at Melbourne; to potentially enrol me in a very private, limited place Chronic Pain Program.
Don’t bother researching it; I tried. There is no information on it. It’s so ‘hush-hush’ that they actually search for their patients instead of having patients go to them; because naturally, they’d have multiple patients applying to be seen.

Imagine a room filled with numerous Professors and Specialists from every aspect of the Medical Field – Infectious Disease Professors, Physiotherapists, Neurologists, Rheumatologists, Gastroenterologists and Endocrinologists – and imagine these intelligent people sharing their wisdom and thoughts about the very rare patient cases.

Imagine spending time with patients one-on-one to actually understand their bodies. At least, this is how Dr S has painted the picture in my mind. No need for appointments to and from Specialists – they are all in one room, looking at YOU… in this case, possibly ME.

Okay, so it doesn’t sound so fun for me.
I will be a fish, in a tank, at a Fish Market.

But hey, if this actually happens, I could be on my way to ‘managing’ my symptoms a lot quicker than expected, and sharing my information with you.
Any progress, is good progress.

Ps, Normal-Sick still sucks more this Mystery-Sick

Confessions:

I think about taking this site down at least four times a week.

I fought antidepressants for months, until I was forced into taking them.

I struggle with loneliness daily.

I haven’t had an anxiety attack in months.

I fear driving.

I always drop ice-cream on my shirt, or jeans, or mouth, or floor.

I am a horrible listener in person, as I am easily distracted.

I am a better support to others, than to myself.

I check my phone 80+ times a day.

I am in love with someone who doesn’t love me in return.

I lack in self-confidence.

I have been staring at my wall for over an hour, drawing blanks about my future posts.

memory-brain-function_742675

Reflections from Rock Bottom.

I stumbled across my diary from when I first fell ill – written literally a few weeks into my illness. Usually all of my diaries are written in hand, but this is one of the rare ones which was typed, and I know exactly why; because I was too weak to hold a pencil when I wrote it, so I typed aggressively until my fingers went numb.
I wanted to share it with you for many reasons;
firstly, it is an insight to what a flare up of Depression is actually like;
secondly, it shows how far I have come with my Depression. I still suffer, but my recent spells have not been as violent as the one you are about to read;
Finally, I think it is also a good insight into how terrifying the initial uncertainty is of having what feels like an alien in your body and losing total control.

If you want raw and honest, then please read on.

TRIGGER WARNING: there is a lot of swearing, grammatical errors out of rage, and multiple references to suicide and self-harm.
It is NOT my intention to offend anyone, so if you are easily offended, don’t read on.
You have been warned!

“Here’s the thing;
I don’t want to be here anymore – it’s as simple as that.
People usually long for more money, better jobs, a perfect partner; but I long to feel nothing, be nothing.
I don’t want to feel guilt about falling in love with someone else whilst I am meant to be in a happy relationship with a partner who I thought I adored. I never wanted to be that girl who cheated. I usually judge people like that, and now people are judging me.
I don’t want to waste all of my savings on medical appointments that give me no answers, and to pay for drugs and supplements that either make me vomit, or explode diarrhoea.
I don’t want to feel another symptom which can’t be medically explained.
Try explaining dizziness to a Doctor; they think you are nuts. How can I explain something that I don’t even understand myself?
I don’t want to live each day stuck in this fucking house, having to do the same fucking routine.
I wake, and I wish I didn’t wake.
I stumble out of bed, make a coffee and toast that I always fucking forget to take out, so I really eat charcoal. I turn on the television and sit there for hours glued to the screen, but not absorbing a word of information. My brain does not work. I cannot access it anymore.
I know that makes no sense, but it is like someone has locked me out of my account. I know the account is mine, but I cannot get the password right.
I crawl to my room like a helpless animal, and lie on my bed for hours because I feel every inch of my body throbbing. EVERY INCH.
Everyone keeps telling me to eat, and I can’t.
I want just want to scream; I CANNOT FUCKING EAT, NOT BECAUSE I DON’T WANT TO, BECAUSE IT FEELS LIKE MY STOMACH HAS SHRUNK TO THE SIZE OF A GRAPE.
HAVE YOU EVER TRIED SQUEEZING AN ORANGE THOUGH A GRAPE?
I THOUGHT NOT.
They keep screaming at me. Helpless screaming.
YOU HAVE TO EAT, PLEASE EAT, TRY AND EAT.
But no, I just sit there in silence and stare blankly at my food.
I don’t want to try anymore. The pain is unbearable. I feel like my stomach acid has shards of glass in it, and my stomach will not stop gurgling. It sounds sick. It IS sick.
My Doctor keeps telling me this is a viral infection. What fucking viral infection leaves you bedridden for weeks at end?
I have lost so much weight. I hate looking at myself. My skin is pale, and flaky. My hair is falling out. I am twenty-two and my hair is fucking falling out.
I have not eaten a meal in days. I don’t even miss food. I don’t remember what it is like to feel hungry. Can you tell me how someone can feel acid rising, and suffer from neverending nausea if they have nothing in their stomach? I want to vomit every second of the day. People try and feed me things to stop the nausea; it makes me feel more nauseous. TRY THE FODMAP DIET, they say, YOU HAVE TO TRY THE FODMAP DIET. Fuck the FODMAP Diet. That’s clearly not my problem if I am unable to stomach ANYTHING.
I have lost weight, and not one or two kilograms. I am 36kg now. I used to be 44, maybe 45.
I have a xylophone for a fucking rib cage and scales for skin.
And my fucking hair is falling out.

Mum comes home from work really late now, and I have to fake my happiness. I have to hold myself together, for her. She knows that I am sick. She doesn’t look at me the same anymore. I think that she thinks that I am ugly. That’s the stare she gives me. I see her staring at me when I bend over and she is in frontal view of my spine.
Well, I am ugly. I look like a fucking troll, with eyes bulging out of my head, skin and bones, fucking scales for skin and my once beautiful hair falling out.
They eat dinner in silence every single night, and I sit at the table because I have to. I watch them eat every bite. They used to push me to eat something, but recently they have stopped.
I force myself to help her clean, until I can’t take another step. My legs won’t carry the weight of my body any longer. I fear I will just drop one day, and I wonder if it will hurt. I’ll most likely hurt myself once I hit the ground.
I go to my bedroom and slice my skin, and I am so consumed by symptoms, that I don’t even feel the blade cut into me. How twisted is that? But I crave my old feeling. I need to have control of something. I don’t control my body anymore.
I am the last to go to sleep, probably because I DON’T FUCKING SLEEP ANYMORE. How does someone sleep when they are in excruciating pain from every region in their body, and they want to vomit? I close my eyes and do the stupid deep breathing techniques that the last Specialist recommended I try. He told me that I need to relax more. I really love how nobody takes me seriously.
Yeah, I’m fucking Depressed. Would you be Depressed if you were plagued with an unknown disease, making you incapable of showering alone and walking, feeling nauseous every second, unemployed, unable to drive or eat food?
So can someone tell the Doctors to stop pushing to trial me on antidepressants, and to focus on the real health problem here? I think that if I could return to my normal life, I wouldn’t feel depressed?

Mum won’t even let me have a shower until she is home, and near me. How embarrassing. I am twenty two and my mother has to stand guard at the fucking bathroom door because I am weak.
Why would someone CHOOSE this? The Doctors insinuate every fucking time that I am just ‘depressed’ or ‘stressed’. One of the idiots actually used BREAKDOWN.
What the fuck do I have to break down about? Is everyone really that stupid? I had a great group of friends, I had saved money and money to spend on myself, a partner who I had mindblowing sex with. I don’t even remember sex. It just dawned on me that he probably thinks about it for every second that I don’t.
I had my fucking dream job, and I was surrounded by the most innocent, beautiful souls. I wanted to educate, nurture and love. I had plans to BE someone, and this plague has taken over and ruined everything.
My friends… well I currently don’t have any. It has been weeks since I have heard from my three supposed best friends. The time went so quickly because I was in a literal state of numbness. I don’t think they’d believe me anyway.
I have no interest in existing any longer.
I do not want to be here.
If I deserved punishment for something that I did wrong, I would have expected to receive something a little less torturous. Because, that’s the only way I can describe this feeling. I am being tortured every day and there is not one single Doctor, Specialist or Naturopath that can help me. They don’t have the slightest clue.

I know I am going to die.
I can feel it.
I see the signs.
If Death doesn’t take me, I will do the job myself.
A body just doesn’t… shut down like this, without anyone knowing why.
If this is my last entry, then so be it. I will be thankful for all of the enjoyment I got prior to being sick. I’ll be happy for the brief moment I was in my dream job, the love I felt and was given, I’ll be happy that I spent some wonderful moments with my family and my friends… back then.
If this is my last entry, then I just want to make it known that I am happy to die. I welcome the feeling. You do not scare me, Death.
I am happy to leave, because if this is what was destined for my life, I don’t want it.”

Learning From Your Illness.

I used to think of Chronic Illness as a burden.

It was a big life change, and not the breezy skip down the yellow brick road, or the ‘I found a Prince Charming’ ending.

I used to see Chronic Illness as a thief; one that stole more from me than your average burglar.
It stole things from me that could not be easily replaced – my independence, my yearn for life, my happiness, my feelings, my body and health.

Everything was suddenly different.

To sum it up, Chronic Illness is shitty.
It is the shittiest thing that someone can have happen to them, and yes, it’s lifechanging and downright devastating. If this were a ‘choose your own adventure story’ I would not be choosing the Chronic Illness path by choice. I mean, who WANTS to feel this sick every single day?

As I approach my one year of illness, and since being diagnosed with Gastroparesis, I can’t help but reflect. SO much has happened in the past year, and it seems like just yesterday that my world turned upside down. I can tell you that I did not think I’d live to see this day. A year of hardship; medications, unemployment, Depression, trials and appointments.
This is only one year of me being sick, so I find it hard to imagine how other sufferers of decades feel.
I could speak about the shitty stuff endlessly, but today I want to chat about something different;

what good has come from being ill?

What have I learnt?

I have grown a greater appreciation for sufferers and for their families.
My blog has opened me up, and early, to sufferers worldwide. I became overwhelmed; thankful that I was not alone, but equally sad and afraid for these people. I didn’t even know these people, yet I wanted to save all of them; fix all of them.
I knew exactly what it was like as an individual and for families.
I felt the disheartened stare from parents and loved ones; the stare that was made up of partial disappointment, loss and uncertainty. The person they had raised or grown up with, was not able to be easily fixed.
A piece of my heart lies with each of you. I know how tough it is, but we (the sufferers) thank the heavens each day that we have you in our lives.
I am thankful to have YOU in MY life.

To which I have learnt how to love greater than I ever have before.
My heart literally tripled in size.
I love everyone, and I want everyone to be loved.
If I could hand out hearts and spoons all over the world, I would.
I have found myself being more emotional as a result of being sick; crying over romantic movies, and when someone else is harmed. I would give my last dollar to help someone else if they desperately needed it, knowing it might set me back a few appointments of my own.

I am incredibly appreciative of my health.
You grow very, very of being sick every single day, and you actually find yourself longing for the simple common flu or stomach bug. I would happily take four nights of Gastro over the neverending spell of nausea and digestion trouble.
I think back to the simple days and smile.
To think that I actually whinged about having a nose clogged with mucus and water eyes from sneezing… how ridiculous does that sound?! I had a very weak tolerance to illness, and that is okay. In the beginning, I wanted to die because I felt I was not strong enough to go on another day.
I hate my illness now, but I have grown more accustomed to the symptoms.
I am stronger.
I know that if I get a ‘better’ day now, it is nothing like my past days. I try and pack it with as many exciting things my body will allow me to do, but I’ll most likely never see a ‘100% better’ day ever again.

I think I could be a Receptionist.
This is not an intended joke, but I hope you laugh.
I am, though, serious.
I have called SO many offices of Specialists and Doctors, in which I have picked up numerous tips along the way and kept them in my memory bank.
I have received the most awful, rude, uncaring receptionists in person and over the phone.
If someone is calling you to book an appointment, it is most likely because they are sick.
They don’t want to be sitting in a waiting room with blaring music from your radio, or bright lights that make you squint. They certainly don’t want to be spoken to like an idiot, and if they request something it is most likely because they are struggling and NOT trying to annoy you or make your job any harder.
I have now obtained the qualities to be a pretty perfect, understanding receptionist.

‘Use time wisely’ is a statement my future self will live and breathe by.
Back in the days, I would cancel on friends as I made the choice to work extra hours or study. There is only so much time in one’s life.
Who honestly wants to spend it doing overtime, or studying excessively? I regret being spontaneous. I regret coming home super early when I had enough energy to stay out late. I regret turning down my loved ones, to spend time inside these four walls. I’ve been stuck behind these four walls for over a year! I would be more than happy to leave!
I now have all of the time in the world, literally, but I do not have the health that I used to, to get up and about. What are weekends? I have weekends all week. No, they aren’t as fun as you think.

I ‘stress less’ nowadays.
I used to be a fiery ball of lava – literally. I used to make myself worked up over the tiniest, unimportant things. I would be late by two minutes, and cry about it all day. I would be busy, busy, busy, which made me angry, angry, angry and I would stress to the point where I couldn’t sleep. If this sounds anything like you, THIS IS NOT HEALTHY, so do yourself a favour and stop it immediately. Sit back and relax.
If you are five minutes late, an hour late; apologise and move on.
Enjoy your healthy, stress-free mind whilst you have it and before the bigger things come in that you REALLY have to stress about.

I have learnt to let go of anger and petty past crap that I don’t even remember happening.
Do you know how much quality energy humans spend on being angry and feeling hate for others?
Do you know how much energy we could save if we didn’t relive awful, painful memories over and over in our head?
Humans are different. We were designed differently.
We will naturally disagree, argue, have ‘fallings out’ but please don’t let them ruin your happiness. Forgive and move on, or just move on and accept what happened.
Think Spoons, for a minute. Imagine how many Spoons you use holding onto that frustration you have had because you had an argument with your partner?
Holding onto bitterness is a very tough cycle to get out of, and whilst you are spinning, you are breaking yourself down to nothing.

Cancelling on others, or being cancelled on, does not mean that you/they love or care any less.
Since being ill, I have cancelled on people too many times to count because I am unable to judge how I will feel on the day, which means that I am unable to plan many things. Everything now must be spontaneous.
If I cancel, please don’t hold it against me, nor will I hold it against you if you cancel. I have all of the time in the world to see you, and entire days where I am sure I can spare thirty seconds to message you.

I am going to see you eventually.

I regained my passion for writing.
Prior to my blog, I didn’t write a piece for just over two years.
I know that many of you are the same.
I lost my spark, but my blog brought the feeling back and it is currently stronger than ever. It was the best decision I made, regardless of how many times I went to take it all down.
I didn’t think I was good at anything except Childcare, and that was the one thing my health would not allow me to do.
But I now think that writing is my calling, and it always has been.

I have learnt that the Government sucks.
Because most of us fall into the Uncategorised category, a lot of us aren’t eligible for benefits. You most likely cannot put ‘Chronic Fatigue’ on the Illness list, no matter how debilitating your symptoms are. I know that here in Australia, Gastroparesis does not count as being ‘sick enough’.
And that’s what most of us most likely are; ‘not sick enough’. This topic makes me angry, so here is a simple message for Government’s Worldwide:
Acknowledge that people CAN fall ill at random times, and that they CAN be undiagnosed, and STILL be ill enough that they NEED some kind of income support.
CREATE a new category for us, so we don’t have to GROVEL at your feet to try and convince you that we desperately NEED help.

I have learnt that a balance of both Western and Alternative Medicine is good for your body.
When your body is rejecting Western Medicine, you naturally turn to anything else you can find to help. Alternative Medicine was my building bridge to strengthening my body, to then be able to take the Western Medicine that I needed, and I am so thankful for it. I research everything before I take it, so I am prepared for side effects, and it’s also fun to obtain new knowledge!
It has taken me a year to finally be on a mixture of medications and supplements that my stomach can actually tolerate.
I am now a firm believer that when you are ill, it shouldn’t be a choice of one or the other. Have a balance of both, be educated in what you are taking and your body won’t hate you for it!

I have gained the utmost respect for everyone who has chosen to stick by me.
I am a bitch.
There, I said it and I apologise.
People don’t have to stick by you if you are sick. I naively thought, when I was first diagnosed, that Illness gives you a Hallpass for people to actually care about you. Wrong. If anything, it pushes them further away from you.
The people who stick around, should be treasured.
I have a war between my brain and my body. I get frustrated and annoyed with myself, which then is sometimes taken out on those who I love. I am sorry.
Thank you for not leaving me, even when I drove you absolutely crazy or looked like a walking corpse. Thank you for loving me unconditionally.
I just want you to know how much I value each of you.

I am turning the tables to my lovely followers.
We might have similar thoughts, or different, but I want to know;

what has your illness taught YOU?

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

So, you’re Chronically Ill. Now, what?

Hello.
If you are a newly diagnosed sufferer and/or blogger, you are in luck; you have come to the right place.
I want to extend a helping hand to you; think of me as a shadow.
Why would a stranger actually want to listen to you?
Because this stranger knows exactly how you feel, and she wishes that she had someone to talk to when she first began her journey through illness.
Let me guess – you feel a range of emotions all at once?
You are afraid, confused, and incredibly frail.
You’ve been suffering for long enough, yet you still don’t have a total grasp on each symptom, and when you think that you do, you are struck down with multiple new symptoms.

You’ve seen a number of Doctors and Specialists and had every test under the sun.
Maybe you are diagnosed, maybe undiagnosed.

Do yourself a favour.
Take a deep breath in, and release.
No, really. Do it.
Close your eyes and take a deep breath in,
hold it for five seconds,
and release very slowly.
Do this as many times as you can before you read on, as what I am about to share with you might be hard to sink in.

I want this to provide you with reassurance; that you are not alone, but I would also like to share my wisdom with you from my own journey. When I first fell ill, I had nobody to turn to. I suffered for months in silence, as nobody entirely understood what was happening to my body, or believed me. I look back and wish that I had someone who said, I believe you. I wish I had someone to talk to about all of this medical stuff and the big life change.

When I say that you have come to the right place, I really mean it.
As you sit behind your screen, you are actually surrounded by many other sufferers sitting behind their screen, experiencing the same things; we all want to be heard, helped and listened to.
You will make lifelong friends on here, and they will be incredibly significant in your journey.

First thing is first; you are sick. It’s a bit of a shell-shock, isn’t it?
You will hear the term “Chronic Illness” floating around. This means that your condition has gone over the three month mark, and doesn’t have a date of finish. You might also hear the term “invisible illness”. This means the illnesses that cannot be “seen” or cannot be “diagnosed”. For example, you can very much see the flu and its symptoms. You cannot see vertigo or pain.

Secondly, you will need a folder. If you don’t have enough money to purchase one, do not stress. Just keep everything “together”, nice and neatly. You will hear me rant about this wondrous folder through-out my blogs, amongst other things.
You most likely won’t have to print anything; your Doctors will be doing the hard work for you. Now, you need to ask your Doctors for every test you have – results that were positive AND negative. Bloodtests (the general ones) are the most important, as some Doctors tend to miss the smallest things in this lot of testing. If you have copies of everything, and they are recent, it saves you from being poked and prodded in the future by new Doctors.
Doctors MUST give you copies of your file, if you ask for them, so please do not sit there and take No for an answer!
In this folder, try and keep note of all of your symptoms, medication trials and food intakes (if you have digestive or stomach issues). Eventually, you will come across a Specialist who needs this information. You are better off having a few weeks of data instead of nothing.

I am making an assumption that most people have an Iphone or touchscreen phone with downloadable apps? Learn to navigate your way through Calendars, Reminders and Notes.
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As seen in the image, my phone holds all of my important reminders. I plan in advance, so I am well prepared for each visit.
Please remember to back up your phone, in case the unthinkable happens.
If you do not have a phone, then invest in an oldschool diary. No need for backing up, there!

I suggest that you find the time to make a call to the office of your Government and see if you are eligible for a sickness allowance or illness benefit. Some of us are able to work, others cannot. The benefits vary worldwide, but every cent helps and there is no harm in asking. If you are not eligible, then do not feel ashamed to ask your Doctors if they are able to ‘bulk bill’ or provide a rate of concession to your fees. Some tests cannot be Bulk Billed, but like I said earlier, there is NO harm in asking!

I suggest that you book yourself in to see a Psychologist.
A Doctor can provide you with a list, or you can do some research of your own.
I can see you rolling your eyes at me; the good ol’ “I don’t need to see one of them” faces.

Yes, yes you do.

You are experiencing, or about to experience, something traumatic.
You should not go through it alone.
You might have a great support group within your friends and family, or maybe you are without. Regardless, I believe it to be a crucial part in your journey. You might feel “on top of everything”, as I did for months, but there will come a day when everything becomes overwhelming. You will evidently feel saddened, anxious. Life will become much harder, so help yourself through it.
I did not see a Psychologist until ten months into my illness – after I had endured countless hospital visits and appointments, testing, ridicule from Specialists, loss of friendships, and changes to my body. I was emotionally, mentally and physically burnt.

I regret not seeing one sooner. Think of them as your Open Diary. Tell them everything you are feeling; good, or bad. When they ask you how you feel, be honest.
You can see them as often as you like. I see mine once a month.
If you do not feel comfortable around the one you find, see new ones until you DO find that one who you click with.
I promise it makes the experience a little less lonely, and you will thank yourself for it in the future.

Be prepared to try everything.
If you want, one day, to be healthy again, you will take the medication prescribed and you will try alternative therapies, but of course there are limits. Do not push your body to do things it is unable to do. Take new medications and supplements ONE at a time so you know which one you don’t react well to, and please, do not end up in the backyard of a sister’s, cousin’s, uncle’s, best friend who claims to be a Qualified Practitioner.
Choose your Doctors and Specialists wisely, but be open-minded.
Sometimes what helps us, are the things that we least expect.

You are going to have to grow thicker skin and become your own best friend; as blunt as it sounds, you might not feel the support you used to feel prior to being sick.
You will learn to read test results like a novel, and you will learn to trust your instinct.
You will receive a lot of backlash and uncertainty from those around you; this unfortunately includes Doctors, Specialists, friends and family.
Don’t let this make you lose faith in humanity.
You can sit in front of a Doctor and explain how sick you are, even though your tests are coming back as negative, and they will not flinch. Their first response will be “but, you don’t look sick”, or “the tests do not show anything, therefore there is nothing I can do”.
You must keep pushing for answers.
You must find the right Doctor, even if that means seeing twenty before one listens to you. Do not let any of them belittle you or shut you down.
Remember that it is a Doctor’s JOB to help SICK people, and you my dear, are sick. You deserve as much time as the girl who just walked in with the flu, because at the end of the day, we all want the same thing; to be healthy.

I want you to keep telling yourself that nobody will truly understand how you feel unless they experience it themselves. Try and not take things that are said, to heart. I know it is hard. I have turned away in tears multiple times, but I told myself that it was because nobody really understood what I was experiencing. I cannot hold anger inside of me for those who pass judgement on me. I don’t have enough spoons to put towards holding anger for someone (hehe).

I learnt quickly to change my perspective of things, and people’s actions. If they want to be educated in your illness, they will ask questions. If they don’t care, their response will be the opposite. All you can do is take care of, and stand up for, YOURSELF.

Connect with others in your community or online through your blog. There are thousands of sufferers who are probably your age, living in your city, and have chosen to write a blog for the same reasons that you have. Most of us are unemployed, stuck at home, and feeling the storm of loneliness.
Be prepared, and open, to making Penpals all around the world. My very best friends are actually international, and I met through my blog. The best thing about having international, ill friends is that you can speak to them via Skype and Social Media without leaving your house! (Of course, I would love to actually spend time face to face with all of you, but online is incredibly convenient when you are ill and the best thing is that you each truly understand how I feel!)

Please take a moment to read The Spoon Theory, as you will see those words pop up all around the Blogging World, mine included. You are now apart of that theory, and have your own spoons to carry and allocate to your days. I also have numerous past blogs from my journey earlier on that you might want to navigate your way through from my main page.

I know this is a lot of information, so I will begin to tie this little chat up with a breakdown of what you have just read:

1. Make an Illness Folder
2. Learn to use Calendars, Notes and Reminders
3. Enquire about Illness Allowance or benefits
4. Book in to see a Psychologist
5. Be open-minded in trying new things
6. Trust your instinct, and be tough
7. Connect with others
8. Read The Spoon Theory

 

I just wanted to wish you the very best of luck on your journey, and remind you that you ARE strong and you ARE brave. Chronic Illness is the most terrifying, excruciating, distressing, confusing whirlwind I have ever experienced. It is okay to feel everything you are in this very moment.
It can also be lonely, but it doesn’t have to be.
I promise that it will make you appreciate and love much greater than you did before.
I am an email away if you need someone to talk to, vent to, or if you want to ask ANY questions.

To my usual loyal followers, if you can suggest anything you’d like me to add to this post to be of assistance to further sufferers, please comment below! I have no doubt that there are many things you wish someone told you when you first began your journey.

Until next time,

C, xo.