Mental Health

Need the help of my followers (:

Hello lovely people,

I apologise for my absence.
Things are crazy at the moment. I have gone from having minimal appointments, to suddenly having three to four a week! I now see two Gastroenterologists, am back seeing my Exercise Physiologist, Acupuncturist, Vestibular Physiotherapist through the Melbourne Dizzy Day Clinic, and my team leaders at the “Illness” Employment Agency. I was supposed to see the Physiotherapist through the Chronic Pain Clinic, but have had no time been well enough to attend!
Between my appointments I have had nasty flares of my nerve pain, and stomach. Once I get one thing settled, the other plays up! Haha, the story of my life.

My “small” kindness project has also brought back worldwide positive feedback, so I am super excited (but equally exhausted) from organising it all!

I’ve popped in today to announce that I have had multiple requests on how to donate, and have set up a “fundraising” page for anyone interested.

The “Be Kind To One Another Boxes” is a project in which I am funding the international shipping of ten full boxes of gifts (donated from multiple, worldwide, generous companies) to ten sufferers of Chronic Illness.

I decided to use my own savings to start this campaign with ten boxes, but word has quickly spread and now I have a room full of I N C R E D I B L E donations and kind-hearted humans wanting to assist in the funding of additional boxes.

If you are in a financial position where you can donate any amount of money – it will go towards the shipping of one FULL box of gifts to a stranger suffering from a Chronic Illness. I am aiming for $300AUD which will pay for an additional eight boxes.

If you would like to help out, please check out the Fundraising Page for more details. There you can also read a bit about my health journey, and how I came up with this Kindness Project.

A few of the wonderful companies who have already donated a considerable amount of product are:
MECCA Cosmetics
Breath Pearls
HASK Hair
HURRAW! Lip Balm
Pukka Tea

EVERY donation counts, whether smaller or larger! And all money is going to a really good cause.

Social media SHARES would be greatly appreciated!

The more awareness spread, means the more boxes I can mail, which means the more members of this very special community get a surprise box in the mail to brighten their day!

This is primarily an Instagram Project, so if you would like to nominate someone to go into the draw to receive a box, details can be found on my page.

C, xo

http://www.youcaring.com/bekindtooneanotherboxes 

http://www.instagram.com/indisposedandundiagnosed

 

NEW PROJECT ANNOUNCEMENT!

Super excited to share that I am working with some incredible companies, and generous humans, to create a limited number of goodie-filled boxes for a few lucky members of the Chronically Ill Community.

I am funding the international shipping costs, and packaging, of these boxes entirely out of my own savings account, so there is NO payment required from you.

I have always wanted to do this project, as I know how lonely Chronic Illness can be. Many of us are left unable to work, unable to go to the grocery store and unable to spoil ourselves. Many of us do not have the luxury of paying for anything beyond medical appointments and bills.

The project’s ONLY aim is to send love and happiness to those who need it most.

I am in the process of collecting donations for the boxes for the whole of September and early October; aiming to have them packed and mailed in late October/early November.

I am aiming for ten initial boxes to be mailed worldwide, but this will depend on the amount of donations received. We already have close to fifteen larger companies donating a decent amount of product and samples such as soy candles, handmade jewellery, handmade comforters, hair masks, makeup and stationary.

If you are the owner of a company who have samples to spare, or you are a generous human who would like to donate any products – please send me an email with the headline “DONATIONS” to discuss.
(Note: All companies and donators will be personally thanked for their contributions in a Social Media Post)

If you have $15-$30 to spare, and would like to help, you would be able to contribute to the overseas mailing of one full box, and the chance to brighten the day of a stranger.
Please contact me for more information.

Do YOU know someone in Chronically Ill Community who:
– are in need of a cheer-up
– have performed a selfless act in spite of their own struggles
– have helped you through a rough time

Complete an act of kindness and nominate them to go into the DRAW to receive one of our limited number of boxes.

This event is primarily based on Instagram, so if you would like to participate or see the incredible product filling these boxes, then please make an account today and come follow us!

BUT considering that you have all supported me through the toughest of times and pushed me over the 1000+ follower mark, I will be accepting nominations from my blog followers who do not have an Instagram Account.

All you have to do is:
– follow the blog
email me at indisposedandundiagnosed@hotmail.com
with the headlineNOMINATION
– include the first (or full name) of the person you’d like to nominate, their country of residence and a social media url so that I can find, and contact, them if they win!
– also include WHY you are nominating them!

If you have an Instagram Account, then please personal message me the details above!

I am incredibly excited about this project, and humbled by the amount of love and positive feedback I have already received from people in the Chronic Illness Community and companies worldwide.

But, now I need your help finding the perfect well-deserving recipients of these boxes!

Love always,

C xo

I finally did it.

I used a Diffuser.

Hi lovely readers.
I have been given this product as part of a product review through the Chronic Illness Bloggers (http://chronicillnessbloggers.com/chronic-illness-bloggers/) network. Although the product was a gift, all opinions in this review remain my own and I was in now way influenced by the company.

If you are interested in reviewing products, please contact Julie through the Chronic Illness Bloggers website. She has created an incredible network, and is a wonderful advocate for our vast range of medical conditions.
There are many companies worldwide who are creating products that benefit the Chronically Ill Community, and who best to deliver an honest review of them? Us, of course.

The product I was sent is one that I have NEVER tried before.
It’s one of those things that you wish you had at times, but never get around to buying.

Organic Aroma’s Essential Oil Diffuser is elegantly crafted.
My grandparents have an old-school Diffuser machine that makes a lot of noise whilst filtering out scents, but this Diffuser reminds me of something bought in an antique store!

The Diffuser itself retails for 95USD (which is 129AUD), and was accompanied by an Australian adapter, and a sample size of Essential Oil.

Fragrances are a blessing and a curse for the Chronically Ill. Some of us are sensitive and feel ill at the potency of some aromas, and some of us reap benefits like relief from colds/flus, nausea and migraines.
I am usually Person A, so I was a bit hesitant at turning it on for the first time. To my surprise, the fragrance was VERY subtle and the only sound heard was a soft whisper as the fragrance was released.
A bonus surprise was that the Diffuser itself is on a colour timeframe and flashes gorgeous rays of rainbow colours whilst it releases the oil!
I took some photos of the gorgeous colours.


The colours are also very soft, so if you have a migraine it should not cause you any more discomfort.
It looks quite lovely in the dark, and creates a relaxing environment if you are feeling rundown, ill with a virus or you just need a moment of peace to yourself.

I only kept mine on for five minutes, and the delicate aroma of Chamomile, Bergamont and Sage remained in my room for just over three hours.

The Diffuser was incredibly easy to put together… similar to screwing in a lightbulb and switching it off and on.

Thank you to Organic Aromas for letting me try such an incredible product. I am definitely one happy customer, and cannot wait to purchase more oils to diffuse. If you have the money to spare or are looking for a gift, it is definitely a worthwhile investment.

Do you use an Oil Diffuser? What are your favourite fragrances?

C xo

HELLO, NEW OPTIONS.

For those who don’t have me on Instagram you missed out on a photo of me post-run around an oval due to this rush of happiness I got today.
There was more to the story than that…

I would like to share with you that I had my interview today with the Chronic Pain Management Clinic at one of the best hospitals here, and…

I got in!

(hence, why I felt on top of the world and ran an oval three times).

The interview had me sit in a small room with a Physiotherapist, a Rheumatologist, a Neurologist, a general GP and a witness.
I was interrogated beyond belief and had to recite every small detail since 2014 (which is incredibly difficult when you suffer from brain fog).
I named every medication I have been trialled on, every test done, every Specialist seen. I had to do the routine ‘touch your toes, jump on the spot thing’ too.

There was a bit of shock, disbelief and then they asked if they could have five minutes to themselves to discuss (which turned into about twenty minutes being alone in a room).
Then they came back and gave me the news: they wanted to help, so I’m IN!

Together, they will be writing a plan of attack and contacting my important Specialists (my Gastroenterologist, Rheumatologist and General Doctor). These are some of my potential pathways:

A) ZOSTRIX “chilli” cream used for sufferers of Post Herpetic Neuralgia.
Has anyone used it before? Apparently the burn is pretty painful, but it helps with nerve damage and severe arthritis? They were shocked that I was not put on it when I first developed Shingles. It might be too late now 😦

B) Physiotherapy with someone specialised in Post Herpetic Neuralgia (Nerve Pain from Shingles).

C) Anaesthetic injections in my neck

D) an appointment with the Dizzy Day clinic to help my balance and dizziness

E) A new antidepressant which targets nerve pain (my current one targets my stomach, so we have to be careful with this option).

I obviously chose option A to attempt first.
(Who would turn down an attempt at the Chilli cream?)

My consultation today was covered, but I will unfortunately have to pay a small fee to see the Physiotherapists. It is 85% cheaper than my current place, so I guess that’s a bonus.

My allowance with the government ends in August, but as usual, there is a wait with my start to treatment for at least another five weeks. My Government Allowance could potentially be extended so I won’t have to look for work for another three months and solely focus on treatment… but they don’t want to jump the gun yet. I still have two months.

So, to sum it all up, I am really excited to see where this takes me.
Like they said today, “it’s all about trial and error”. I was left thinking that everyone had given up on me, and that we had tried everything and that I would have to live with this uncertainty forever.

Apparently we haven’t tried everything. I just had to find a new team, with new ideas.

My treatment for H.Pylori ends on Friday, so I am also excited to finish that too. It has been one of the worst medication treatments I have ever been on (and I don’t usually whinge about medication).

Lots of love and spoons to each and every one of you.
Thank you for your endless support on my journey.
There is hope out there for each and every one of us. It unfortunately takes a lot of time, a lot of trials and a good, caring team of professionals… but there is hope.

C xo.

I Choose To Stay.

I have two big things that I’d like to share with my lovely followers today.

Firstly, I received a call today from a very well known hospital in Melbourne, and I have been accepted into the first Interview Application Process for the Chronic Pain Management Program I spoke about close to six months ago. My Specialists and I haven’t spoken about it since early January, assuming that our attempts were forgotten or rejected.
There is a lot of legal paperwork being sent out to me today, and to be entirely honest with you, I don’t have complete knowledge as to what I am signing up for.

All I know is that this program is not offered to every patient, it has taken six months to get through to the first process, I am expected to meet with them in two weeks and sit in front of a team of Medical Professionals who will be choosing the best cases to go forth with the program.

If there was any time to really share my story, it’s now.

I believe that this program is an ideal step in the right direction for my illness journey. I have reached a roadblock in regards to managing my chronic nerve pain, so this has come at the best time. I will keep you posted on the outcome and visits that follow via my Instagram Page and Blog.

Secondly, I would like to share a quick story with you in addition to spreading “hope” in spite of any bad days, or rough flareups you are currently experiencing.

I have been suffering with a really awful stomach flareup these past two weeks. I have gone through days where I have not eaten, I suddenly have reflux that is burning my throat and chest, and my stomach has decided not to digest any food – liquids or solids. It is an extremely exhausting process.

Last night I forced myself up and out of the house to surprise a really good friend at her birthday.
I have not made an appearance in a public bar in about two and a half years, due to illness, so this was a massive achievement for me.

As I am in war with my own body, I also battle my own mind when it comes to making decisions about using extra spoons for my social life. I can sit here for hours tossing up and pros and cons of going out for an event, and when I choose to cancel, I feel disheartened and label myself as a “shit friend”.
I do not enjoy letting my loved ones down, or disappointing them because I cannot attend their planned events.
We, (the chronically ill) feel awful day in, day out and then we feel burdened when we are in public with others, and guilty when we are too ill to be social. We know how much energy it takes to prepare and attend an event, and we know how guilt-ridden we will be if we choose not to.
It’s a constant cycle.
But, like the birthday girl said, “illness is out of your control”.
Remember that, because it is true.
Chronic Illness has taught me many things, but one of the important ones is that we did not ask for this, nor are we doing it to ourselves. We are not in control of the situation at hand. Now, you can either take that information and choose to die, or you can take it and choose to fight.

I choose to fight.

I am really lucky to have a supportive group of friends who understand my limitations, and do not grow ill feelings towards me if I cancel on them due to illness.
I was well cared for and had a really lovely night.

Many people have asked, and will ask the obvious: am I paying for it today?
Yes, I am paying for it today, and yes it was loud and terrifying and completely out of my comfort zone, but I’d go back and do it again. All of the pain I felt yesterday, and today, I would go through all over again if I could have another enjoyable night like this: a night where I felt as “normal” as could be.

I’m not encouraging you to force yourself to do things that your body cannot do. You know your own body and your limitations. But, I want to stress the fact that there ARE good moments.
They might not come around as often as I would like, but when they do they are beautiful.
My constant strength through the rough days is that eventually I will reach one day like this; one worth staying for:

C xo

Illness Army: “The Never-ending Journey”

PLEASE take the time to read this piece.
I promise you will not regret it. I applaud Joshua for being brave enough to write this. It shows great mental strength considering all he has been through.
I hope that by sharing this piece, it helps others who have experienced similar circumstances. We can still find love through our illness, and mental struggles.

If you enjoyed this piece, or would like to contact the author please visit his blog.

If you would like to submit your story to Illness Army, please check out our Submissions Guidelines Page. You can also contact me through our Instagram and Facebook account. I look forward to hearing from you.

I don’t know how to start this story, nor any idea for an ending, but we’ll get there. Everything takes time and patience.
But in all honesty, “everything” takes a lot more than time and patience. Heartache, pain, suffering, and loss are also a big component of anything you experience in life. After that, it just comes down to how you cope with those various elements.
For myself, it was always losing my fears in music and writing my thoughts down in a journal. I’m quite convinced that it’s saved my life – probably on more than one occasion. The funny thing is that I don’t write much anymore and I believe I know the reason.
Ever since I was five years old, I’ve had crushes on girls, while also wondering what my life would amount to – where I’d be, who I’d be with, if I’d be married – and I’ve gotten it all wrong. Why? Because I thought that I had to be like my parent’s – not in the sense of what they did, but when.
When I get married, when I get a job, when I get a car. I think most people do this considering your parent’s are your first teachers about how the world works, but I took it in a literal sense. Then, as my grade school years enveloped, I realized most people started having jobs and relationships and getting around independently – not me.
But my biggest concern was relationships. I always envisioned being married or – at the very least – having a girlfriend like my friend CJ’s brother did at the age of 16. Again, I took things to a literal tee – even at the age of 5. One of my closest friends gave me the best advice I’ll ever receive a few years back. We’d just gotten back to my house after a day out together when I told her I was sad and scared that she was leaving for school in Chicago. “Although change is scary, it can be a good thing,” she said. I hear those words every time I’m afraid of a changing situation in my life now, and I couldn’t thank her enough.
Caroline will always hold a special place in my heart, and the three years following her departure were tormenting and soul-stifling. But sleepless nights over her and sleepless nights over what ensued after those three years were incomparably more painful.
Enter a woman who we’ll call – um – Megan. Megan was a friend who betrayed the trust of myself and others to the likes of which shall never be healed. Then again, when you seduce the broken spirit of a depressed, anxiety ridden 20-year-old at the age of 35, what left is there to trust?
“A moment of passion and blindness was bestowed upon me only hours ago,” I wrote of the situation. “What of the repercussions? What of the repercussions? Have I sold my soul in this dangerously beautiful act? I have my demons, however, one has left me forever.” At this point in my life, I felt lonely and afraid of love – undesired mentally, physically, sexually – and I guess that’s what happens when you have a physical disability such as Cerebral Palsy.
At the time, my friends didn’t even know how to respond to the benign scenario. Some told me to accept it and move on. Others thought it seemed enjoyable. What followed the months after that night were feelings of guilt and sorrow, pain and suffering, insanity and malice. I’d cry myself to sleep numerous times a week wishing for someone to save me, while having flashbacks of her legs around my waist, her breathing – her hands pulling the hair on the back of my head – that kiss on my neck that overtook my fears at that moment and turned it into blind passion.
I whispered for her to follow me to which we found ourselves at a point of no return. I asked if she was clean, to which she nodded in confirmation. I didn’t have protection, and I didn’t bother to ask. I didn’t know how to say no, or even ask if she had any, so I let her straddle herself atop my lap as she thrusted her hips and removed her shirt.
And to think that this moment started hours earlier with her sitting inches from me closing her knees around my leg and giggling at every word I spoke. Although I know one thing’s for certain: you never forget your first. It all still feels like as if it were a dream – a concoction of a teenage boy’s ultimate fantasy – only to be acted out in reality, without all of the “accomplished feelings” and high-fives from your bros. I think I always knew something was going to happen that night – she was flirting like a high-school girl with an engorged crush on the dark, mysterious guy who always sat alone at lunch. Only, she was no school girl, and I don’t eat lunch. She brought out my fears and hopes all in an equal fashion. She enveloped my desire to feel normal – and normal I had felt – up until the point where my sudden attack of conscious decided to guilt me into fault for what ensued between two morbidly, sad lovers.
So, as any story goes, now what?
I managed to graduate from my community college and ended up at my state university four months later – to which I withdrew medically from my only semester.
I met with a counselor named Lisa for every week during that semester. Megan was the source of my fear, my worries. Walking around campus feeling isolated from society, from friends and family and having no self worth, make life pretty unlivable. I hated Megan. She took something from me I still can’t get back: losing myself to someone who’s in love with me as much as I am with them.
I felt unwanted by everyone and everything. I felt like a freak undeserving of love and affection because of my disability. One day, Lisa asked me if I were a woman and Megan was a man, would that change the meaning.of what happened between us. I said maybe, but I really meant yes. I went through with my actions that night because I was too afraid to say “No.” I thought she’d judge me, too, if I didn’t give in to her advances.
In an odd twist of fate however, that night’s allowed me to reconnect with others and with myself. Fast forward a year after I withdrew, and I met a girl online named Anette. Psychiatry has become my best friend, and I understand my importance to others now. Anette has become my saving grace and without her love, I’d be a body with no shadow.
Anette will be here with me next month for a week and four days. We’ve both said that it’s going to be the best time of our lives, and I can’t wait to hold her hand and feel her lips pressed against mine so that I may finally be free of the torment that Megan caused – including the torment my broken mind and heart caused me my entire life.

Illness Army: “Fear Of Failure”

I just opened my email account for this blog, and have found numerous entries for Illness Army! Thank you for sending them in, and I apologise for my absence and delay in reposting them. I have been incredibly busy, and distracted.

If you would like me to share a post that details your Chronic Illness, or highlights a memory along your journey, or maybe you would just like to share hope for other sufferers – please check out our Submissions Guidelines Page!

Here is a post from my good blogging friend, Matt.
A short excerpt from the author: “Anxiety and Depression can make us all feel so incredibly alone, when in fact we’re not. Millions of people all around the world suffer from the same debilitating illnesses, but we can’t always see that. On my blog I try to address that, I try to be constructive, to make a positive difference in both my life and in yours”.
You can find Matt at insilencewesuffer.wordpress.com

For as long as I can remember I have had a fear of failure. I think it must have been ingrained me as a child whilst I was growing up. I hold it accountable for a lot of my mental health problems that I’ve since developed, namely my struggles with stress and anxiety which can often lead to bouts of depression.

To tell the truth, my relationship with failure is more than a little awkward, I guess some would describe it as –love hate: failure loves me, but I hate him. Or at least that’s the way I used to feel about him. I’d try to avoid him, but he’d always be one step ahead of me, just waiting to jump out at me and take me by surprise.

I used to be petrified of making a mistake (I say used to, I still am, generally speaking, but I’m trying to be a little more forgiving of myself these days). At primary school I learnt a lot. I learnt to read and write, my numeracy was pretty good too – I was a weird child, one of those kids who absolutely loves their times tables! This carried on to my secondary school. I did really well, on the whole, passing my GCSE exams with flying colours, but then disaster struck. I had my first real taste of failure the following year, and I didn’t know how to respond. It’s only now I realise that in spite of learning about trigonometry and iambic pentameter, photosynthesis and latin, I had not learnt about failure.

My secondary school had this technique, where instead of teaching us that failing was not a big deal, that it really was ok, as long as we then took on board the lessons learned, they taught me to fear it. Failure was something to be avoided, at all costs. I think being at such an elitist school meant that with every exam paper I sat there was a real danger to my status. Exams weren’t just a threat to my marks, they were a threat to my ego too; my reputation as a clever student was on the line with come exam day. When the inevitable fall came, I didn’t know how to react. The way my school had taught me to look at failure made me feel incompetent and inept.

I’ve since learned, primarily through the trial and error of everyday life, that mistakes are an inevitable part of our everyday interaction with a complex world. This is precisely why learning from them is so essential.

I came across the following quote recently, and I thought I’d share it with you all, as it has an interesting outlook on our relationship with failure. It teaches us to embrace failure, to study all possible outcomes and to accept that every now and again we can be wrong. “The desire for perfection rests upon two fallacies. The first resides in the miscalculation that you can create the optimal solution sitting in a bedroom or ivory tower and thinking things through rather than getting out into the real world and testing assumptions, thus finding their flaws … The second fallacy is the fear of failure… You spend so much time designing and strategizing that you don’t get a chance to fail at all, at least until it is too late … You are so worried about messing up that you never even get on the field of play.” (Matthew Syed, Black Box Thinking)

Failure continues to haunt me. Along with my struggles with anxiety, it has limited my risk taking, and consequently my expectations from life. I hope that these words can help anyone that reads them, even if it is only the knowledge that they aren’t alone in their fear of failure. Whilst I don’t mean to blow my own trumpet (I can’t play the trumpet – music isn’t one of my fortes come to think of it!) often it is those of us who are the most successful who are also the most vulnerable. We have received so much praise for our seemingly flawless performances that we haven’t learned to deal with the setbacks that confront us all at some point in our lives. We should regard failures as an inevitable consequence of the mismatch between the complexity of life and our capacity to understand it. It’s only with a more accepting attitude towards failure that we will learn its lessons. Don’t take it to heart.

The Place In Between.

I apologise for my absence, but I’m hoping you will take ten minutes out of your night to read my update.

I’ve been sitting here for weeks wondering what to write.
I have been dealing with grieving over the loss of my friend to suicide, and trying to put my puzzle pieces together. I have battled bad flareups, more testing and uncertainty. I have battled my Depression and Anxiety demons, and I have even managed to get a bit and actually enjoy the company of other humans my age.

When I first fell seriously ill in 2014, I watched my career crumble beneath my hands, my fat fading away to bones; I watched my hair become so dry that it fell out with the simplest touch, and I had a stomach that had lost its ability to break down food. I was left nauseated daily, dizzy daily, weakened, fatigued, insomnia ridden, depressed, confused, uncertain, terrified… the list goes on.

I think back to my thoughts then, and all I remember on a day-to-day basis was the certainty that I was going to die.

I knew it.
I could feel it.
I was just waiting for it to happen.

I was newly diagnosed with “mild” Gastroparesis that presented with “severe” symptoms.
I, nor my Specialists, had no control over my stomach.
Everything you name, we tried.
I had MULTIPLE MRIs, CTs, xrays, Colonscopies, Gastroscopies, Breath Testing, Emptying Scans, Bloodwork, a lumbar puncture, fasting tests, balance testing, hearing tests, faeces and urine samples, laparoscopies.
I had every home remedy, every detox supplement, every ‘green’ drink that supposedly changed the lives of so many. I tried EVERYTHING.
The condition ruled me.
It was killing me, and nobody could justify or manage it.

When you are sitting alone in your house, feeling exhausted from waking up every morning to battle your own body, you eventually accept that death is coming.
Each day is a struggle.
It isn’t like having one bad day.
A bad day in comparison to this is actually a great day.
The actual extent of the struggle is indescribable.

I wrote letters.
I wrote goodbye letters to everyone I could think of that filled my heart with warmth, because I knew that one day I wouldn’t wake up and I needed them to know that I tried as hard as I could.
I also remember sitting with my parents at the dining room table, crying, and telling them how much I wanted to die.
I saw how much devastation I unintentionally caused them. I remember my sister despising me because I was being given all of this attention. I remember my parents saying “we don’t know what do to do” repeatedly. They would be the first ones to question me, to take out their frustration on; but they would also be the first ones to defend me in public or to family and friends who chose to give their opinions.
I remember hearing them whisper about my frail body, and then look me in the eye with a halfhearted, sympathetic smile because they felt sorry for me and they didn’t know how to save me.
I remember sitting in waiting rooms with a vomit bag, and grown adults blatantly staring at me and whispering.
I remember how many friendships I lost due to their inability to accept me with this condition.
I remember the loneliness.

I was twenty-two.

It has been over two years since I was diagnosed with Shingles, and it has been just over a year since I was diagnosed with Gastroparesis and started this blog. It has taken me over a year of medication trials, hospital visits, endless tears, locking myself in my car and screaming until I have no voice, walking on the arm of someone else to stay upright, counting the hours until I fall asleep, memorising medications and test results, vomiting and eating, abdominal pain that left me in a ball on the floor… all of this to reach where I am now…

Where am I exactly?

Well, I’m not cured, and I’m not exactly making rapid progress.
I am somewhere in the middle.
I don’t know what that middle is called, but I hear that it could be something called Acceptance.
I am still attending appointments, but they have been cut down from daily, to fortnightly and some monthly.
I am still dizzy and unbalanced, but I’m somehow completing my daily exercise regime and I’m even jogging small distances independently now.
Yes, jogging!
I am still left bed or couch ridden on SOME days due to flareups, like today, but I can tolerate these “bad” days because I now know the difference.

And that’s the point that I want to make to you today…
If you are at the beginning of your health journey, or you have been sick for some years now, everything is going to be okay, I promise.
You have most likely faced the worst of your illness, and that was the beginning.

Believe it or not, you will grow accustomed to your body and the symptoms that accompany your medical condition. I’m not telling you that every day is easy, because it isn’t.

If you told me a year ago that I would still feel dizzy, but be able to jog around a park oval, I would have laughed in your face.
If you told me a year ago that I would have 7 days of good health in a row, I would shake my head in disbelief.
If you told me a year ago that I would be able to eat three meals a day, on most days, I would not believe you for a second.
If you sat me down a year ago and prepared me for all of the things that I would have to endure, and actually come out of it feeling relatively “well”, I would have burst into tears with absolute fear.
I look back on how underweight I was, how afraid and ill I was, and I see that I HAVE made progress, and you will too.

As time goes on, medicine is advancing and your illness is becoming more common. That means that there are more people in YOUR situation, feeling what you feel, seeing the Specialists that you see and they will most likely be trying everything they can to feel better.

I went through my journey expecting to make a full recovery. I could never accept the fact that life would be harder for me; I just thought it would be impossible and I had to make a full recovery in order to LIVE.
No, no, no.
I had it all wrong.
So, here I am speaking from experience.
I am here to tell you that you will most likely not make a full recovery, and you just have to accept that… but I want you to know that there is hope that you will make PROGRESS. There is hope that things will get better, that you will find the right code to your puzzle and be able to go to sleep with a smile. Things will get better, but it takes time.
I promise you will come out stronger at the end of it. You will be able to brave the bad patches with more strength than you’ve ever had before.

I also wanted to share a photo with you.
I am not looking for negative comments about my weight, or the fact that I am wearing minimal clothing. I am sharing a private piece of my life with you, to make a point.

I took the prephoto when I first fell ill. I was at a shocking weight of 33kg (72pounds) and had bones protruding from my ribs, my shoulder blades, my hip bones, cheekbones and knee caps. I was going through my day sipping on water and not eating. I had at least four nose bleeds a week, hair falling out and skin dry and scaly. People would stare at me and say “you look sickly thin”.


I currently weigh 47g (103pounds) and I tried to take an identically placed photo to show you.
I now aim for two to three meals a day (unless the nausea is really bad). If I do have a bad day I try to at least drink one smoothie. My hair has grown, and is strong enough to have been bleached about ten times already. I have fewer days of complete brain fog. My skin unfortunately still fluctuates with my stomach symptoms, but I am at a healthy weight. I have gone from being an Australian Size 4 (which isn’t actually made so I had to buy kids clothes and jumpers) to an Australian Size 8. I have gone from not fitting in my clothes, to being to big for them and having to upsize.
I have actually been referred to as “fat” now, and do you know what I do? I laugh.
Yes, I have a round stomach now, I have lovehandles, I have curves.
If this is fat, then I’ll wear it with pride, because I would rather be this weight and be able to eat, than be underweight and living off of sips of water.
I still feel “sick”, but nowhere near close to the sickening feeling I had a year ago.
I still have multiple severe symptom days and feel like life isn’t worth it, but I reassure myself that it will pass. It WILL pass.

In regards to my own journey, I still have a long way to go.
I would like my flareups to decrease to 1-2 days a week as opposed to an entire week sick and then one week not sick. I would like to be able to tolerate the dizziness better too.
I finally have a good team around me, supporting me, and some incredibly understanding family and friends.

I have been spending my spare time educating others through Facebook messenger and Instagram. I want to help others so they do not feel as alone as I did in the beginning of my journey.

Everything takes time.

So, please, if you are having a rough time, hang in there. Hold on.
Keep researching, keep trying new things, keep educating others.

I know that one day you will also look back with pride, and you will see how far you have actually come.

C xo

In Loving Memory.

*IMPORTANT POST*

It is through tears and sadness that I write this post tonight.

I received some devastating news, and have spent my past two days in a complete state of shock. I have gone to write this so many times, but I just don’t know what to say.

Back in Childcare, I became very close to a mother from Spain, as I taught her firstborn. She was my first friend at that centre, and her family became more like family to me.
When I fell ill in late 2014, she also fell ill to similar symptoms as I. I resigned, and we both spent time searching for answers and keeping in close contact. We forever spoke about how tough it was finding support for something that nobody understood, and how challenging it was to be told to “think positively” repeatedly when we were suffering in silence. We both understood each other on a level that not many others can relate to; a level that you would understand quite well if you too are ill. She gave her full support for this blog, and for that I am so thankful.

It has been close to two years since I last worked with her son, and saw her face-to-face. We spoke every few weeks and shared health, children and life updates, and I was only catching up on her photos with the children a few days ago, when I found out the horrible news.

I can’t even say it, because I don’t want to believe it.

I know that this message must be shared, but I wish every second that it was not with my friend as the example.

I find myself grieving for the loss of a friend, and grieving for a husband and two younger children who are without a wife and mother from this day forth.

I cannot stress the following enough:

Chronic Illness, whether mental, physical or combined, is an incredibly difficult journey. The uncertainty is terrifying, the tests are invasive, the symptoms are debilitating. It is a burden, it is lifechanging, it is exhausting, it is lonely, it is depressing…
But please, please don’t let it become a death sentence.
Do not let the overwhelming darkness of Chronic Illness kill you.

Your parents, your extended family, your children, your friends, your colleagues; I guarantee that one or more of these love you and care about your wellbeing.
I, a complete stranger, care about your wellbeing.
You might have mistaken their silence for being rude or uncaring, but they most likely have NO knowledge of your inner thoughts and pain. You must take the step to reach out. Reach out to anyone.
Please, do not battle in silence.
There are loved ones, Psychologists, Doctors and Counsellors who are here to listen to you, to help you.

In memory of my dear friend, I ask three simple things of you tonight:

1) Reach out to your loved ones tonight and simply, LOVE them.
Put aside all anger, all stress and just tell your loved ones how much they mean to you, please.

2) If you know of someone going through hardship, or haven’t spoken to someone in a while, I encourage you to reach out and ask them the simple question, “How are you?”
This simple sentence packs a powerful punch.
Mental health is real,
Suicide is real,
and with these three words, you might start the conversation that saves someone’s life

3) Please share this post in loving memory of my friend, and to spread awareness for those battling Suicidal Thoughts who might not think that they have a reason to live tonight –
You DO.

Finally, to my dear friend A,

I am having a hard time accepting that this is goodbye.
I still find myself going to message you. I want to speak to you just one last time.
I don’t want to believe that this is how our journey ends.
You were a unique soul and the most incredible mother to those beautiful boys. I mean that. You were an even better wife and a genuine, loving friend.

I am holding close to my heart all of the wonderful memories I shared with you and your family. I remember the day that we met, and knowing that our friendship would last a life time. I loved my job for children and families like yours.
I clearly remember cuddles with little one and nicknaming him a Koala-bear as he glued himself to my chest; I remember the Christmas Decorations you handmade me (which I still have on my tree each year); I remember becoming so sidetracked with chatting at work, that I’d think you were one of my colleagues as you’d be sitting with me and the children at story time; and I remember your complete support when I first fell ill.
You offered numerous times to care for me, and to have relaxing “girl” days at your house. You sent me photos of the children’s birthdays, because you knew how heartbroken I was about having to leave my dream job. When you referred to me as your son’s second Mum, I was overwhelmed at how close we had all become – that we were now family.

Each night, you would tell me about all of the wonderful adventures you had planned for the children at home; that you always kept them busy with cooking, decorating, creative activities. You were adventurous, accepting, and kind beyond words.
I was in awe of you.

I went home wishing that all parents loved like you and your husband did.
I wished that every child I would teach in the future, was like yours.

You were destined to be a nurse and mother. It was your natural instinct to care for others before yourself, and I wish you could have seen how great you would have been.

I feel absolutely sick to my stomach that we will never get to have that girl’s night that we planned for so long.
I hope you know how special you were to so many people.
I know in my heart that you were strong. This does not at all show any sign of weakness, or define you. I know that you were suffering, and for that, I am so sorry.
I can’t stop crying, A.
I hope that you are reading this somewhere, and know how much of an impact you made on my life. I know that you will continue to guide the little one’s on their path through life, and you have my word that I will be there for them too. I will remind them of how incredible you were.

We will meet again one day, and we will have that girl’s night we planned, I promise.

I hope you are painfree now, sweetheart.
You will be missed terribly, and loved always.

Until we meet again, Rest In Peace X

If you are, or you know of someone, dealing with Suicidal Thoughts, Depression or general hardship, please locate a Suicide Hotline or Chatsite in your given country of residence:
http://www.suicide.org/international-suicide-hotlines.html

 

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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