Author: indisposedandundiagnosed

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

#soulswithastory

A few weeks ago I was approached by an incredible woman who created a group to highlight the unheard (and often misjudged) stories of worldwide sufferers of Chronic Illnesses and unexpected life obstacles.
Each subject differs between the type of problems faced, but we are each faced with a hardship and are united by one image – the window to our souls.
It was an absolute honour to be asked to share my personal story, and I have been moved to tears by the stories of others.

Campaigns/projects like these make me thankful for being apart of such an understanding community, and remind me of the inner strength we each have, but often forget, during the roughest of days.

Please give them a follow on Instagram at @soulswithastory and have a read of the other warriors who you might not pick from a crowd 💚

My story can be read below and you can keep up to date with my post-procedure updates via my Instagram Account @cassandrareitano

Cass Reitano’s Story: But, you don’t look sick!

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 Illogicality of Illness”

Another excellent post from my friend Kate at illuminatingkate.wordpress.com
Kate is a 26 year old woman from Australia. In 2015, she caught Glandular Fever (mono) and never really recovered, which has left her housebound (and still often completely bedbound). Kate started her blog from my bed to document the highs and lows of a life with Chronic Illness, and connect with others in the Chronic Illness Community.

If you have a post similar to Kate’s that you’d like to see published, please check out our submission guidelines.

I’m a fairly logical person. I think that’s why the unpredictability of chronic illness baffles me so much. You’d think I’d just accept it now after all this time, but every time I experience an exacerbation of my symptoms, my brain starts ticking away, trying to figure out what caused it. Was it the extra hour of television I tried to watch yesterday? Was it my futile attempt to make myself lunch while standing up? Could it be a side effect of one of my medications? You see, I want there to be an answer. I really want it, more than anything else. I want there to be a clear pattern of cause and effect. If there’s a pattern, I can take steps to prevent myself from feeling like that. I can avoid unnecessary pain. Isn’t that something anyone would do?

However, my illnesses aren’t like that. I doubt many chronic illnesses are. Some days, I just wake up and I feel profoundly worse than I usually do, and there isn’t necessarily any rhyme or reason for it. On those days, everything is more painful and more exhausting. Sure, sometimes there can be triggers – too much activity, too little sleep, emotional stress or acute physical illness – but it isn’t always that simple or clear cut. I can’t always find an answer. Sometimes, my illness is just worse, and there was little I could have done to prevent that. All I can do is wait for the worst to pass, and manage what I can – take my medication, manage my pain, balance activity with rest, and look after myself as best I can. The last few days have been like that for me. The few things that I’m usually able to do at this stage in my illness, such as shower in my chair or do some stitching in bed, have felt impossible. Attempting them has left me consumed by pain and exhaustion, so instead I’ve withdrawn. I’ve curled myself into a ball on my bed, closed my eyes, and tried to shut everything out until the worst of it has passed, because everything has just been too difficult. Light has hurt. Sound has hurt. Social interaction has hurt. Movement has hurt. Everything has hurt.

I understand that I can’t completely control my illnessss. That is their nature. I must admit though, their unpredictability is extremely frustrating, and I’m still learning to deal with it. I’m still learning to accommodate my illnesses without feeling bitter and resentful that this is my life. They’re here to stay. They’re part of me. I can’t shove them under the carpet and pretend they don’t exist. They’ll keep inconveniently showing up, kicking and screaming and banging their fists on the floor, until I’m forced to acknowledge them. However, I’m determined to not let them govern my life. So I’m focusing on accepting them right now, without wasting energy on fighting the uphill battle of denial first. At the same time, I don’t want my illnesses to be all I think about. I don’t want to be afraid of them. I don’t want to avoid pushing myself or trying new things out of fear of possible repercussions or payback. I don’t want them to become my entirety. I am so much more than illness. I want to live my life despite illness, not because of illness. It’s a constant balancing act, but I’m figuring it out. I am. I’m learning about setting limits and pacing myself, and most importantly, I’m accepting these things as necessary, rather than viewing them as personal failures or shortcomings. I just need to do what I can, when I can, and most importantly, listen to my body. It seems to know what it needs best.

So my current goal is to just accept those days where illness leaves me crippled with exhaustion or curled over in pain, because there isn’t really anything else I can do. I will accept them, and remind myself I can survive them. I’ve survived them before, and those extra awful days eventually do pass. I always eventually get a little moment of relief, and right now, that’s enough.

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: “Coping with Undiagnosed Chronic Illness”

I would really love for you to read this piece emailed through by Laci, as at strikes familiarity and will take you back to the earliest days of your illness… when your life changed.
At some point in our journey we were too undiagnosed, and the feeling of uncertainty is one I know I will never forget.
Our journey takes us through the motions of trying to find an explanation for each of our illnesses, but what happens when we take the correct measures, and still remain undiagnosed, and ill?

The author of this post can be found at www.liviatree.blogspot.com
A quick description of the woman behind the piece:
“I am a Chronic Illness warrior but I am also a mother, a wife, an artist, and a lover of all things beautiful. I started this blog to help myself cope with having a Chronic Undiagnosed Illness. Searching for a diagnosis can be frustrating and lonely so I also hope to reach other undiagnosed warriors, offer my support and hopefully help them feel a little bit less alone”

I struggle.
It’s no secret.
There is something going wrong with my body.
I have no answers–only long lists of questions, fears, worries…
I want nothing more than to walk my path with Grace. But sometimes it gets really arduous. Sometimes I cannot find a light. There is only darkness, a place where all Hope is gone and all that remains is Shadow. It is a place of desperation, a place where I’m not sure that I can handle feeling the way I do for one more day, let alone the rest of my life.
I am not always successful at hauling myself back up from the Shadows in these moments. But when I feel the sun on my shoulders again, when I feel Grace by my side, I remember things that can potentially help me when I stumble. And I will stumble again.
Here, then, is a partial list. I write it in the hopes that it will not only help me remember to walk in the Light, with Grace, but perhaps also help some of the millions of others living with chronic undiagnosed illnesses:
Suit up. (Assuming of course, that you’ve got the energy.) Wear skirts. And dresses. All those pretty clothes in your closet that you have because you planned on having an important job someday. Put flowers in your hair. Get a haircut every so often. And wear makeup, if you like that kind of thing. That way you won’t just be really sick. You’ll be really pretty sick. Because if you are going to spend a lot of time lying in bed or sitting with statuesque stillness on the couch, spending a large majority of your energy on not throwing up or falling over, you might as well feel as good as you can while you do it.
Laugh. When you wake up in the morning, even if you open your eyes to discover you still feel as sick as you did when you closed them or when you step out of the shower exhausted because of the effort it took to clean yourself; when you find your legs wobbling like they are made of Jell-O and when you can’t think or speak straight, just Laugh. Share the crazy weird jokey thoughts in your head and laugh at yourself even when everyone else just stares at you. Laugh at how absurd it is that you feel so sick but no one can find a good reason for it, because it is, after all, ridiculous. Laugh even when you feel like crying. In fact, go ahead and laugh until you cry.
Cry. Let the tears run down your cheeks and make puddles on your shirt, your pillow, your partners shoulder. Cry because you’re sure that your illness is ruining your children’s childhoods. Cry because neither you nor your family can remember what life was like before you got sick. Cry because you’re afraid. Cry because you’re stuck and have so little hope left. Cry because people you never expected to be there show you astonishing compassion. Cry because some of the people you thought would be there for you aren’t. Cry for all the losses. Let it all out. Cry until your tears run dry and until you are able to let go of all the guilt and shame and anger and fear, even if it’s only a temporary letting go.

Be grateful. Thank your family members and caregivers and friends. Constantly. Thank your friends for encouraging you when you find yourself in the depths of despair. Thank them for enjoying the time they spend with you, even when that means (as it frequently does) just sitting together. Thank them for telling their stories and helping you to feel, at least for a little while, like you have a life. Thank your family for picking up all the pieces you’ve had to drop and for being there for you. Thank your kids for their generous offers to let you lean on their shoulders when you’re dizzy. Thank your spouse for listening to you when you whine and cry and tell bad jokes and go over the same old possible-cause-list for the 400th time even though it leads in the same old circle to nowhere. Thank him for trying to help you find answers. Thank him for not turning away even though it would probably make his life easier. Thank him for not resenting you. Thank him for telling you that you look beautiful when you know you look like you somehow just miraculously escaped from a barrel of fighting monkeys.
Know your limits and respect them. Set reasonable goals. Do what you can but don’t do everything. Pick a room in your house and make cleaning it your goal for the day. Or just cleaning part of it. Or just get a load of laundry done so the kids have clean clothes to wear. Or just wash the dirty pan that’s been sitting by the kitchen sink all week. Or just make it from the bed to the couch. It doesn’t matter what it is. Do it and then stop before you are worn out. Just do a little and be proud of the little you do.
Connect. Find people who are capable of empathizing with what you’re going through. Find blogs written by others who are sick and undiagnosed and who know how overwhelming and terrifying and frustrating it is to be in this position. Read how they feel, how they deal and let yourself be comforted by commonality. Write them letters thanking them for sharing their stories and providing you a moment of comfort, a sense of being less alone, with the hopes that you can do the same for them.

And most importantly:
Believe. Believe that you’ll find a doctor who will know what is wrong and what to do. Believe that answers will come, eventually. Believe in remission/recovery even if you think it’s unrealistic. Believe that people care even though they fail to show it. Believe that even though someone said the complete wrong thing, they had good intentions. Believe that someday soon you’ll have a good day or maybe even two. Believe that you are loved. Believe that your children will be okay, that your husband truly doesn’t resent you. Believe that there is a greater purpose even if you can’t understand what it is.
Believe. And breathe.
With Love and hopefully a little Grace,
Laci

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.