illness

Exercise for Chronic Pain.

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

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

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

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

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

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

We fear people judging us.

We fear feeling worse, and not better.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

C xo

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Happy One Year.

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

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

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

Lots of love, and endless gratitude,

C xo

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STRONG Enough?

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

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

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

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

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

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

We pressure ourselves, because we feel pressured.

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


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

I know.

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

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

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

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

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

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

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

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

But don’t let them question your strength.

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

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

Chronic Illness Strength,

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

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

C xo

  
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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.

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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?

Strawberry Fields Adventuring.

Hello, my beautiful readers.
How are we all feeling this week?

I apologise for these long absences. I keep having lengthy flare ups, and my recent one was a neurological one. I have been suffering awful migraines from my neck pain; so awful that my vision began blurring, I had this consistent brain fog and full force dizziness that left me with horrible nausea that I could not get rid of. Upon visiting my sweet Doctor for the fifth time, his worry had me sent me for yet another MRI. When my results (obviously) came back as negative yet again and I was a blubbering pained mess in his office, crying that I could not go on another day with these symptoms, he said, “Cass, I suggest that you take the time to go away for a few days, and allow yourself to really relax and be loved. It gives me time to clear my head, and time for you to clear yours”.
(I will be writing a post on the be loved part very shortly, as he took me by surprise).

I explained to my Doctor that I would probably not feel much better “clearing my mind” when it was my body that was plagued by the unknown disease.
Yes, I was/am stressed.
I was stressed about money, my options, the future and my everlasting symptoms, and I was sick to death of the people in my life not caring anymore. I was tired of explaining the same story to them.
I didn’t want to be shoved aside by yet another Doctor and told to “take a holiday”, “think positively”, and “relax”.

Which leads me to my little spontaneous getaway – yes, I managed to get away with my best friend for a few nights to a beach two hours from here.
I was incredibly ill on the night we arrived, and I felt so disheartened to know that I could potentially have a continual flare up whilst I was up there.
Who knew that a two hour car ride would be so exhausting?!
BUT by some miracle, I awoke the next day and felt incredible… the best I have felt in a very long time.
I took advantage of this feeling and managed to tick off a goal from My Living List, whilst enjoying some incredibly tasty meals and dessert, a nature walk (whilst linking arms with my best friend, BUT nonetheless a walking achievement!), a visit to a tranquil spa retreat on a mountain and, a beautiful quiet moment at a secret beach.

I (naturally) awoke the next day with sore limbs, a very upset stomach and pain, but I can look back to this one day and remember how happy I was to be living.

I thought that I would share some photos of my big-adventure-day-of-good-health, with you.

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Sneaky mid-strawberry-bite.

 

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Fields, and fields of these beautiful berries!

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Enjoying my tub of strawberries.

 

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The beach that we were not allowed to walk on…

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The mountain of spas surrounded by nature.

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My favourite dessert (which I haven’t had since I first became ill) – creme brûlée

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A secret beach that we literally stumbled across (no editing to this photo!)

Sorry for the short post; I promise to write more next week.
I hope that my little adventure brought a smile to your face, and I really hope that you write your own Living List; because you never quite know when you will receive a moment of good health to achieve and explore!

Love and hugs,

C, xo

LL IV

I apologise in advance for disappointing you, but I fear that I am not enough for you.
All that I am.

All that I am not.

And, I don’t know how to be more than this… especially at the moment.

What do I do?

Which road do I take?

When is the right time?

How do I do it?

I am unable to offer what I used to.

I am still selfless, but more selfish.

Most times I don’t listen to full sentences as my brain is weak and lacks in concentration, so forgive me if you have to repeat things.

I might need to hold onto you to walk, and some days I won’t be able to walk at all, but I will try every day for you. I will push myself until I fall.

The nausea will stop me from speaking some days, but on these days I will try to be a better listener.

I will put up a defence wall when I feel threatened, and I will let you win every argument because I don’t have the energy to spare on fighting you.

I fear that the progress I have made will never be enough, as I will never be the person I was before this.

Each day will forever remain a challenge, and I will forever be different to how you once remembered me.

I promise you, though, that I am trying to be more than this illness.

I am trying to be more, for you.

I relish in your energy, using it as a temporary bandaid for my symptoms.

I will brave each bad storm, in hope that when it passes, we can walk hand in hand through the puddles together, all of the way to our rainbow.

I want you to note my flaws, and accept them. Maybe in time I can remould them into something beautiful.

I want forehead kisses when the days are dull and my heart feels empty.

I want you to glide your tongue over every inch of my skin, reminding me that there is a warmer, softer feeling beyond chronic pain.

I want to be reminded of the world outside of this plague of disease.

I want you to love all of me, like I love all of you.

The Truth Is Hard To Face.

One day you are going to look back at this moment and realise that this was you at your strongest, not weakest;

That what felt like the end of the world, wasn’t;

That behind the tears and the ugly in Chronic Illness,

you were beautiful;

That you were destined for things beyond medication trials and side effects,

soulcrushing appointments and trying to keep food down;

And on this day,

you’ll know that you

defined brave,

and that you were loved more than you knew.

A neverending day of shaking, nausea, medication numbness, holding onto everything to stay balanced, an inability to digest, and my love for this toilet.

A neverending day of shaking, nausea, medication numbness, holding onto everything to stay balanced, an inability to digest, and my love for this toilet.

When is enough, really enough?

I’m having a rough month.
It could go well into two or three months.
I have tried everything, everything.
I feel like I’m back to square one with the symptoms that haunted me at the beginning.
I visited my Gastroenterologist, after his month vacation, and told him that I’ve lost the five kilograms I put on, am in excruciating stomach pain, have constant nausea and am not responding to any medication.

I am tired.
I am tired of going backwards.
I am tired of telling him that I’ve gone backwards.
I am tired of explaining to people why I am “still sick”.
I am tired of being the guinea pig for a range of medications that are not making me feel any better.
I am tired of being told that I have this stomach disease, but am unable to manage it.
I am tired of my body being so fragile.
I am tired of paying Specialists money, and walking out feeling the same.
I am tired of wondering if something has been missed.

I didn’t mean to take it all out on him.
It kind of came out like projectile vomit.

But, he apologised.

I thought he’d then wipe his hands clean of my case, but he rewrote our action plan. New medication, one more test to make sure we haven’t missed anything, bloodwork and even a possible reference for a Neurological Gastroenterologist somewhere in the inner city.

The medication isn’t helping, and I still feel absolutely crappy, but I dragged myself out of there and said “thank you for helping”.

There is no manual to tell you how to handle a Chronic Invisible Illness. (Note to self – write an Invisible Illness Manual).
It’s all about trial and error, and taking chances/trusting complete strangers with your body. What is wrong? What is right?
I wish I knew.
It would have saved me many nights of excruciating pain and trips to the ER and Doctors.
You see every Specialist you are recommended to, you take every test, you try every medication and you even resort to trying out those people who “worked miracles” on your friends and family, in hope that they’ll be your knight in shining armour.

But, I keep coming up with blanks, and I’m sick of it.

When do I put my foot down and say, “I refuse to do this”?
No more appointments, no more referrals, no more medications, no more “have you tried this/seeing this person?”, and no more tests.
How can I manage something that currently cannot be managed? (And not by choice – my body is unresponsive to everything we have tried).
Do I keep pushing myself/spending money to see Specialists in hope that someone will find something different?
Will I ever find management or am I running in circles? Am I making myself more unwell by obsessing over the unknown? Over management that seems to be nonexistent?
When do I find peace?

I am surrounded by the darkness of this illness.

My life is my illness.

I cannot enjoy the company of friends or my loved ones, graduation, a career, driving, walking… without feeling these incredibly debilitating symptoms.

And, the sad truth is that nobody really cares.
Your Specialists take your money and send you away.
Your Doctors pump you with medication, painkillers, antidepressants.
The Government just want you back at work.
The ill just want to play a game of who is suffering the most.
Your friends aren’t interested in your sob story because they have bigger things to worry about than you being ill.

The bloggers like your post within two seconds of posting it, (almost never reading) but your stories are never really HEARD.
Your family have had enough, and just want you to be the person you were… “Normal” again.
Your partner is under immense pressure because they have become your fulltime carer/financial aid/transport/nurse, instead of lover.

Wouldn’t it be more simple if I just disappeared?
When is enough, really enough?