Category: Crohn’s Disease - Conscious Crafties

Posted on 22nd June 20162nd May 2018 by Katie Carone — Leave a comment

Why Mommy Can’t Dance

Mommy Can't Dance book - Help children understand Chronic Illness, Katie Carone

Here’s my story (reposted from My Website Mommy Can’t Dance)

Spanish-style music was playing in the background. It was unusually hot for October, but I could feel a slight breeze on my cheek. The nerves in my limbs were twitching like they wanted to get up and run yet felt like they were being held down by cement. My eyes were closed, but I could see lights dancing and swirling like waves of fireworks in my head. I vaguely heard a man walk by and comment in my direction, “I guess you can have too much fun.”

This was me—sprawled out on a table in the wine garden at Disney’s California Adventure Park. It was the nearest place I could get to after exiting a ride with my kids and sensing I was going to collapse. It felt like I was in a dream. I had no perception of time or the fact that I had been non-responsive for over two hours.

The paramedics that huddled around me were prodding me and asking me questions, but they seemed so far away and I was just too tired to answer. Too tired to open my eyes. Too tired to move my leg that had fallen asleep some time ago. In the back of my head I could hear a frantic voice whispering, “Something is very wrong!” But at that moment I was just too tired to even care.

Little did I know that this incident was the beginning of an illness turned disability that would change my life.

Postural Orthostatic Tachycardia Syndrome (POTS)

So what was this mystery illness? Postural Orthostatic Tachycardia Syndrome, also known as POTS. As my doctor explained, upon standing my heart rate increases much more than is normal. While this is a defining characteristic of my condition, it is not just my heart rate that is altered. POTS is a dysautonomic disorder. It affects the autonomic nervous system, which controls our bodily functions that we don’t usually have to think about, like heart rate, circulation, blood pressure, breathing, digestion, temperature, hormone production, etc. POTS can be triggered suddenly by a trauma or viral infection, as it was in my case. (I’d had a sore throat for a week and been under a lot of stress from work as we embarked on our family vacation.)

While many of my symptoms are present all the time, they are amplified when I’m sitting up and even worse when standing. Because of poor circulation and low blood volume my brain suffers from not enough blood and oxygen. My symptoms include brain fog, dizziness, migraines, chest pain, nausea and other gastric issues, temperature control problems, and extreme fatigue and lethargy. I get overstimulated quickly– movement, light, and especially noise really affect me. Additionally, my body overproduces adrenaline, causing intense tremors and muscle spasms.

Overnight I went from being a relatively healthy, active person to someone who could barely get out of bed.

Chronic Illness Affects the Whole Family

Katie Carone, Mommy Can't Dance — Katie Carone
Mommy Can’t Dance

I have always been a go-getter and an overachiever– from dancing 4-6 hours a day and attaining valedictorian in high school to an adulthood of teaching group fitness classes, owning and operating a small business, and being a wife and a mother of four. To lose my mobility and functionality was devastating.

This condition was not just life-altering for me, it affected my whole family. I could no longer take my kids out for the adventures we loved, like going to the children’s museum or hiking in the mountains. I couldn’t go to important events like music concerts, dance recitals, or preschool programs. And the day-to-day limitations were even harder to accept. I could no longer make dinner, help kids with homework, or get them ready for school or bed. I oftentimes could not even get myself out of bed without collapsing. (My husband has found me on the bathroom floor more times than I care to admit.)

I was battling to come to grips with my new reality. But I was not the only one. My kids were also struggling to comprehend why I couldn’t do what I used to do.

Our family has a tradition of taking turns sharing good news and bad news each night at dinner. The nights that I could make it to the dinner table, I noticed a trend in the news my kids shared. My four-year-old twins started repeating the same news night after night. “My good news is that I love mommy. My bad news is that I miss mommy.” Even my 10-year-old daughter would say, “My good news is that mom was able to come out for dinner. My bad news is that mom is still sick.”

I have vivid memories of a meltdown my daughter and I had one evening as she was preparing for her dance recital. She came into my room so I could do her hair, yet I couldn’t even sit up on the edge of my bed long enough to do it—let alone make it to the recital.

Over the holidays, one of my twins rushed into my room so excited for me to come see the Christmas tree he had helped decorate in the basement. After five minutes of him tugging on my arm begging me to come, and me trying to explain why I couldn’t simply get up and walk down the stairs, we both ended up in tears.

These are just a few of many examples.

Mommy Can’t Dance

As a mom, it is no fun to feel physically awful, but it is worse to know that your kids are suffering too. I hated that my illness was affecting my children. I needed a way to help them understand that my illness and inability to do things for them or with them in no way affected my love for them. Additionally, any chronic illness brings with it feelings of helplessness for the patient and the loved ones. I wanted my kids to find ways that they could feel helpful and loved. Thus, the book Mommy Can’t Dance was born.

While this book is near and dear to my heart, I recognize that I am not the only mom struggling with chronic illness. I hope this book can help other mothers and children that are similarly struggling.

The children’s book “Mommy Can’t Dance” is available at:

Available to buy via Amazon Paperback or Kindle.

For UK orders BUY BOOK here

For USA orders BUY BOOK here

CreateSpace Store
Support Dysautonomia International

In an effort to further the advocacy and research on POTS, the illustrator and I are donating all proceeds of the book Mommy Can’t Dance to Dysautonomia International a 501(c)(3) non-profit founded by patients, caregivers, physicians and researchers dedicated to assisting people living with various forms of dysautonomia.

http://www.dysautonomiainternational.org/

Happy Endings?

While I wish I could write a fairytale ending to my personal story, that is simply not the case. I have found a few medications that have helped, and I continue to pursue additional treatment options through trial and error. Like many others who suffer with chronic illness, I understand that this may be a lifelong condition. However, I refuse to give up or give in, and I hope to someday report that mommy can dance again.

Posted on 15th June 201620th April 2017 by Conscious Crafties Stories — Leave a comment

Would I ever be able to sing and dance again?

Amy Oestreicher artist, Gutless and Grateful

It all started with a dream.

I grew up doing musical theatre.

Let me rephrase that. I grew up thinking my life was a musical. Call it the “theatre bug”, call me a “drama queen” or a great big ham – I lived for the world of the stage. For me, singing and acting were ways I could connect with the world around me. When I took a deep, grounded breath from my gut, I sang what my heart longed to express. I found comfort in the words of my favorite composers. I read scripts like they were novels. I would play with my playbills from various shows I had seen like they were my Barbie dolls. Through theatre, I had a place in this world. I could make believe by inserting myself into characters from every era, situation and mindset, while still expressing my own individuality.

I was the kid who got sent to the principal’s office because when the teacher left the room, I would jump on her desk and start tap-dancing. I was the girl who forced every unwilling classmate to join me in a Les Miserables medley, assigning them their designated parts to pass the 30-minute school bus ride.

Amy Oestreicher starring in her one-woman musical, “Gutless and Grateful.” — Amy starring in her one-woman musical
“Gutless and Grateful.”

Even all the way up to high school, I was the theatre-girl. It was my identity, my passion, my livelihood. I sacrificed my social life and gave up many opportunities to immerse myself in what I loved.

I’ve always been warned not to put all of my eggs in one basket, but theatre ran through my veins – it was all I thought about, lived and dreamed. I’d write songs in my assignment notebook as I waited for the school bell to ring, then hop on the train to the next open call I’d read about in Backstage. When I fought with my brothers, I could only debate with them if we could do in the spirit of a musical theatre duet. They weren’t so keen on that.

So what do you do when you’ve invested everything into your passion and you can’t follow it anymore? I’ve always thought about what would a world-concert pianist would do if he injured his hand, or a dancer breaking a leg…

…but sprains heal and wounds can eventually mend. Dire circumstances felt much more long lasting; when at 18 I awoke from a coma. Although the medical staff—that suddenly became everyday faces—was more concerned about keeping my organs and me alive, I was still trying to grapple with one frightening new concern:

Would I ever be able to sing and dance on stage again?

With a ventilator and a tracheotomy, I couldn’t even talk. From months of bed-rest, the first time I was able to stand up, I was alarmed at how they trembled, as if my legs were Jell-O. I lost the energy to even think about what I loved, and being unable to eat or drink in these new medical circumstances turned my once-steady focus to mush and irritability.

I remember asking every person I could find in the hospital if they thought I would ever be able to sing and dance again. I was faced with many apologetic “I don’t knows”, sighs, shrugs, and awkward changing of the topic. However, I remember one occupational therapist gave me words that to her, felt like words of encouragement. She looked at me compassionately, and said, “You never know – the human body is amazing. I had one patient who showed no signs of hope, and a year later, when he was discharged, he only needed a wheelchair!”

(These were not exactly the words of encouragement I was looking for.)

With time, patience, and dogged determination, I was eventually discharged from the hospital. What I’m glossing over are the multitudes of surgeries, setbacks and frustrations, because what was the most important was my passion – I never forgot how I missed the stage. Even not being able to talk or stand up on my own, I still visualized me singing and dancing. Without theatre, I felt disconnected, purposeless, a has-been. I missed the vibrant girl I remembered being the first to sign up for auditions, now condemned to a realm of medical isolation.

I had always had a dream of combining song and dialogue in a show of my own design. I love the idea of storytelling through theatre, but as a teen, I didn’t really have much of a story to tell. But sometimes, a setback is an opportunity in disguise. Suddenly, I had a tale of hurdles, triumph, and heart.

Eight years after my coma, I was finally headed towards a life of medical stability. I learned through experience that things can heal with time, and that’s not always the prettiest or easiest way. It was an extremely difficult journey, yet when I started to put together a musical of my life, things felt like they had happened for a reason. Now I had a story to tell, a message to share.

My one-woman musical autobiography, Gutless & Grateful, started out as stapled pages of my journal – a few pages from the thousands of journal entries I had completed when unable to eat or drink for years. I selected 16 songs—some of which I had written – that had always resonated with my journey and me, and loosely strung them together to sing for my own therapy. I’d perform Gutless & Grateful for my parents, my dogs, but mostly for myself. Through the songs, I could allow myself a safe place to feel the charged emotions I was still trying to process from years of medical trauma.

I called it my “world in a binder”. My parents called it “Amy’s little play.” It was no surprise when I had many looks of concern and gentle warnings when I decided to book a theatre in New York for my world premiere!

I performed Gutless & Grateful for the first time in NYC in October 2012. It was a frightening, bold, vulnerable, and breathtaking experience. In it, I told everything – the pain, the medical, the joy, the infuriating – with music, drama, and humor, most importantly. I had played “roles” before, but for the first time, I was honestly revealing my own medical and emotional struggles for hundreds of strangers every night. It was a risk to lay my soul bare, but the reward was in how my own vulnerability caused others to become vulnerable and moved by my own struggles.

Since then, I’ve been performing it in theatres, hospitals, and groups in need of any kind of inspiration and encouragement. When I realized how combining powerful firsthand experience could transform lives, I developed my little-show-that-could into a mental health advocacy and sexual assault prevention program for students. Nearly losing my life at 18 years old, I’m now reaching out to students at that same pivotal point in their own lives.

Medically, my life is far from perfect, but now when a surgery goes wrong, I use it as more material for my show – if we cant learn to laugh from hardship, we can’t learn anything. And for me, when I learn, I feel alive – that just as trees grow, change and evolve with every season, I can too.
Through Gutless & Grateful, I’m sharing my story and helping others find the gifts and the gratitude in the hardships. And in healing other people, I heal my own self a bit more every day. I’m not there yet, but just like my show – I’m on the road.

As a performer, all I want to do is give back to the world. Being up on stage and singing is one part of the joy, but what brings the process full circle is knowing that somewhere in the audience, I am affecting someone and making them think in a different way. That is the power of theatre – stirring you to see things differently. Doing what I love, my passion once again can freely flow through my veins, and I’m a person now, not just a patient or a medical miracle. Passion may not heal 27 surgeries, but passion has healed my heart. My passion has re-anchored me in who I am. And for that, I am Gutlessly Grateful.

Amy Oestreicher

Speaker, Artist, Author, Performer, Playwright, Actress, Survivor, Writer for Huffington Post

*Celebrating Life’s Beautiful Detours*

#LoveMyDetour

Posted on 1st May 20161st May 2016 by Jennie Louise Smales — Leave a comment

The Search For Diagnosis Continues

It has been said that I’m just constantly looking for new diagnosis. That I want to be ‘more ill’. I suppose, in a way, this is partially true. I am searching for another diagnosis. Maybe more than one. In fact, I’m devoting a hell of a lot of my life to it. But I don’t want to be more ill. Why would anyone want to be more ill??

You see, I just don’t feel my search is over. From the very beginning I have beaten my own path when it comes to my healthcare. Since being a child I knew there was something drastically wrong, but I was always met with disdain. Many doctors simply felt I was a hypochondriac. Even when I started collapsing I was told, to my face, I’d done it for attention. (Erm, no, floors are hard and painful. That is not how I would get attention thank you very much.) So getting a diagnosis was a huge relief for me. Getting several came as a shock.

You’d think I’d be happy with that. For a few years I was. But then I learned about my conditions. I realised that my body and the way it works does not properly fit the conditions I have. The medications I’ve been given do not control symptoms as they should. Many symptoms I suffer shouldn’t even be there. This does not sit well with me. The final straw has come when one of my diagnosis has been disproven altogether. So many symptoms cannot be explained at all. If they can’t be explained, how can they be treated??

So the search resumes.

Here’s the thing though. I’m not a hypochondriac. Nor am I a martyr to my illness. I do not want to prove myself more ill, nor be more disabled. But giving up on the search is like admitting this is it. This is as good as it gets. My quality of life now is the best it will be.

I’m not willing to do that yet. I want to try everything. Check every possibility and see if there is ANYTHING that can improve my health. That can make me a better mother and wife. I’ll go through the horrible tests. I’ll trial the medications. I’ll put up with the side effects. Because I hope that one of the tests will find the last missing piece of my puzzle. I believe that there’s still something, or someone out there that can help me improve. Even if it’s just 5%. I’ll take that 5% and I’ll use it on my family.

If not? If I’m wrong? Well, at least I’ll know I tried.

Posted on 8th April 201611th April 2016 by Conscious Crafties Stories — Leave a comment

READER STORY – My colon ruptured on the table!

Karen Hunter - my colon ruptured on operating table

Karen Hunter crohns disease — Karen Hunter
Knits by Karen

When I was 25 I became ill, but they didn’t know what was wrong as all my tests came back clear. Eventually they took me to theatre to open me up to see what was going on. My colon ruptured on the table and I woke up with an Ileostomy, it was later discovered that I had Crohn’s Disease. It was hard to come to terms with having to wear a bag for the rest of my life. Over the next 13 years I was in and out of hospital for various procedures and operations.

In 2008 I was taken in so they could remove adhesions as they were pulling the stoma back inside me. The operation went well and I was recovering, until 10 days later, when I was in an awful lot of pain, it turned out my bowel had strangulated itself, so back to theatre where they removed even more of my bowel. I then contracted MRSA, septicaemia and internal bleeding. Back to HDU, then transferred to another hospital, my mother was told for a second time that they didn’t think I’d make it through the night. I did but I was in so much pain, it was put down to going through the operation, but it carried on for months and to this day I am still in constant pain, which has got worse and worse.

I’ve been diagnosed with Abdominal Cutaneous Nerve Entrapment Syndrome. I am on a very high doses of pain medications, I have had a couple of Nerve Blocks which have given me short periods of pain free but when they wear off the pain comes back. I have been told that they don’t want to operate on me because of what happened last time. So this is me for the rest of my life, in constant pain, I haven’t worked since 2008 and it is doubtful that I will ever again. That is why my crafting is so very important to me.

I have knitted since I was about 5 years old, mostly for my sisters children or for charity. A neighbour asked me to knit a hat for her son and she was so pleased with it she told me I should be selling them. It took a lot of persuasion but Knits by Karen was born, I sold by word of mouth. I managed to get someone to teach me crochet as I’d always wanted to learn and things really took off. I did a few Craft Fayres and I started getting lots of orders. To me knitting and crocheting is keeping my brain active, I’m also speaking to people, something I had almost stopped doing when I became ill. I’m not able to do it all the time, but I find if I can concentrate on making a hat or cowl, it gives me something else to think about other than my pain. I also got a Shih Tzi puppy 4 years ago and he has also helped me immensely. If I didn’t have my knitting and crochet I really don’t know what my life would be like, a lot worse than it is at the moment, that’s for sure!

🙂 Visit My Shop

Posted on 28th March 201628th March 2016 by Jennie Louise Smales — Leave a comment

You know who your REAL friends are

Would it surprise you if I told you that the majority of people whom I count as my true friends in life are people I’ve never actually met?
Of course I do have a couple of normal friends (literally two). Women who have known me since high school and I know will always be part of my life. Women I’m eternally grateful for. Plus, there’s my husband, who’s my best friend. But, other than that, the people I rely on are thousands of miles away.
How can this be?? Well, when living with chronic illness it’s hard to find people who understand. I’m very lucky, because those in my life always try their best. They treat me with kindness and patience and bring humour into my life regularly. But it’s hard. It’s hard for them and it’s hard for me. Hard for them, because no matter what they will never know what it TRUELY feels like to live in my shoes (something which I’m happy about, I would never wish this on them). Hard for me because I constantly wish I could keep up, or do better. Like I have to justify myself, even though I don’t.
So, as you can imagine, life can be very lonely and frustrating. Feeling alone whilst wrapped in the loving bubble of your friends and family is one of the most challenging feelings that accompanies chronic illness. Because of that, I sought out support groups. I wasn’t well enough to go out and physically attend one (plus finding one locally that matches my rare illness would be much like finding a needle in a haystack) the Internet became my searching ground. Facebook in particular.
I soon found several groups, and over zealously joined them ALL. Finally, people like me!! Except no. I soon found out that every group has a different dynamic, and some people in them are just craaaaaazy. It takes time to find a place to fit in. Over the years the groups I’ve used have changed and evolved. They’ve shrunk significantly. But now, now I have my friend base.
I’m in a small group made entirely of women. Those women understand me, and it is EVERYTHING. We support each other on hard days. We laugh. We cry. We take the mic out of this health crap in a way only people suffering can. We care for each other. Isn’t that what makes a TRUE friend? Knowing that someone is in your corner, no matter what?
No, I’ve never met these amazing women in person. But they know the bones of me, and I them. They literally saved me on my darkest days. My prison of my bed is not as lonely with their chat and banter. My achievements are less feeble to those who know what an effort just being is. My life is more enriched. I can enjoy my other friends and my family more, because I can air my frustrations with those who understand.
If you are living with chronic illness, I urge you, please find your friends. Find the group of people who do not judge, and will be there on those dark nights. People who will laugh with you at the dire straits you live in, and it’s ok because they’re in them too. In this day an age, nobody has to feel alone. Your friends are out there. They might just be on another continent.

Posted on 23rd February 201627th February 2016 by Jennie Louise Smales — Leave a comment

Time to heal

A lifetime ago I was a young and energetic (ish) uni student. I studied Surface Pattern Design and had a summer internship set up with Emma Bridgewater. I was going places. I knew my path. It involved graduating from my course and speeding off on my exciting roller coaster of a career. I’d continue to study. I’d travel. I’d make good money and fulfil my dreams.
But life had other plans. My health problems were already there. Though undiagnosed and less severe than today they were already dragging me down. Like lead weights tied to my heels they slowed my progress. Put me forever behind the pack in the race to qualify. But I was determined. I could do this! I would work extra through the summer and take my third year part time. Unfortunately my tutor did not agree. My tutor who also happened to be head of the faculty.
Because I only had a crohns diagnosis she didn’t see how all my other complaints fitted with that. Though I had mountains of doctors notes she felt I had just fobbed off uni. Though, with my allowed extra time, I was on track to pass the year she felt I hadn’t had enough taught time. Her recommendation was repeating the second year and doing the third year part time. I didn’t have enough funding for that. I told her so. I told her I’d have to leave. She stood by her recommendation.
It was then that my life altered. It was the that everything I’d hoped and dreamed of since being tiny crumbled to dust. This was the first major blow dealt to me by my health. The first of many. But this was possibly the one that broke me the most. Not only because it crushed my dreams. Also because my self esteem was shattered. Surely if I had any talent at all my tutor would have fought to keep me on the course? Supported me, as I’d seen her do other students. Not cast me out like last weeks rubbish.
That was almost ten years ago. At the time I believed I picked myself up and carried on, unfazed. But that’s not true. My self belief had taken a huge knock. From that day forward I stopped drawing. I didn’t paint. My sewing machine lay idle and was eventually gotten rid of. Looking back through my social media accounts there’s been many times I’ve sworn I’ll get back into my drawing. My art. But I never did. I remained broken.
Then I started this blog. The first creative thing I’d done in such a long time. Even though I wasn’t writing for anyone in particular it still terrified me. But I ploughed on. A few people seemed to enjoy it, and a friend asked me to share it on her site. (https://www.consciouscrafties.com/) Conscious Crafties is a selling platform for disabled people and their carers. It gives them an outlet for their creativity and helps them to build up their confidence and self worth. Not only did I join the site. I also joined the private group for the Crafties. Being a blogger for the site meant they kindly let me in.
I have to say that being around such a creative group of people has been incredibly therapeutic for me. Their makes are beautiful and inspiring. So inspiring that a few weeks ago I picked up a sketchbook that I’d been given two years before. For the first time in such a long time I sat and I drew. And I enjoyed it! I felt relaxed and at peace. Since then I’ve been to an art master class and enrolled in a life drawing class. Only once a month. But it’s something to look forward to. I’ve drawn more and more and even took some tentative steps into crafting.
I will never be the high flying designer is hoped to be. But thanks to the creative environment I happened upon in Conscious Crafties I’m now starting to enjoy art again. I’m starting to heal.
Here’s a few of my pieces I’ve done and a beautiful key ring which is one of the many items which can be found on Conscious Crafties.

Black ink squid drawn from my daughters animal book.

Pencil sketch of a seal found on google, drawn from my phone.

Hope keyring found on www.consciouscrafties.com

Posted on 21st January 20162nd May 2018 by Jennie Louise Smales — 5 Comments

You didn’t just go there?!

I often read blogs about ‘What not to say to the chronically ill.’ On the whole I do think these are helpful for people who want to remain a good friend to those of us who have been blighted with these kinds of issues. (Huge credit to you for trying!! We know we aren’t the easiest bunch to be around at times, or at least I know that.) However I do find these blogs to be a little blanketing. Not all of us are the same. For example, many advise not to tell your chronically ill friend they’re looking good, because it implies you think there’s nothing wrong with them that day etc. Well, sorry to break the mould here folks, but I couldn’t disagree more. You see, most of the time I look far, FAR from good. In fact I look positively haggard. So, if by some miracle I’m actually looking good (particularly if I’ve made a special effort to) it’s lovely if people notice! Funnily enough I don’t want to look as sick as I feel.
So, here’s my list of things guaranteed to get MY back up, and why. Feel free to add your own in the comments section.
But you’re used to it.

This is usually in reference to the pain I live in, or some other aspect of my ill health. People often say this when they are ill, because clearly having these symptoms temporarily makes them oh so much worse than living with them day in, day out, for years on end.
Can I just clarify something here. You NEVER get used to crippling illness. Resigned to it. Yes. But not used to it. Learning to live with something is very different than becoming used to it. For example, if it became law that all men were to be kicked in the balls on the hour every hour, would their lives remain the same? Would they be happy? Soon this would become the new norm. After initial fighting, and resistance, the men would be resigned to their fate. But, would that make it hurt any less? No. Would it make the daily torture ok? Hell no.

What are you using that for?!

Often accompanied by ‘It makes you look like an old lady.’ Or also ‘You didn’t need it yesterday.’ As you may have guessed, this is referring to one of my mobility aids. Whichever one I happen to be utilising at the time.
Just know that using any of my aids is a huge disappointment to me. I hate to do it. But I will. If it means I can get out on a day Id usually be stuck home, or go on a day trip with my family, I’ll use it. But I’ll also struggle as long as I can without it. There is nothing shameful about using mobility aids, but it’s a personal issue I have, one that I’m trying to get over. I don’t want to feel embarrassed to use something I need. Your ‘joking around’ doesn’t help. Please stop.

It must be nice getting to stay home all day.

I’ve even been called lucky. Lucky. (Just let that sink in.)
I did not choose this life. Staying home all day everyday is not my idea of fun. Being stuck in bed is not my idea of life. I went to university. I used to have a career. I was going to earn good money and have a nice house. I was going to travel the world. There is not a day goes by I do not wish I could be working and less of a burden on my family. Oh, and there’s the crippling pain, exhaustion and plethora of other symptoms. They’re not fun either.

I wish I could be a stay at home mum.

This fits in seamlessly with the above comment.
You know what? So do I! I wish I could be a stay at home mum. At least the mum I always wanted to be. But I’m not. I’m an ill person. I’m a woman who listens to my daughter play whilst I lay in bed. I’m a woman who lets her husband run the home, and needs him to look after her. I’m a woman who’s absolute best will never be anywhere near what she feels she should be doing. Please don’t think I’m getting to be a Betty Crocker mum. I’m not. But I am giving my kids the best of me I possibly can.

You want rubbing out and starting again!

Someone also once kindly told me I needed putting down.
I know these comments are meant in jest. But, when someone is feeling worthless, this type of thing doesn’t help. It’s just another stick for me to beat myself with.

I feel so sorry for you.

There’s many other ways of saying this. But they all boil down to the same thing. Pity.
I don’t want your pity. Sometimes I have my own little pity parties, but they have a guest list of one. My life is what I’ve been handed. I’ll live it as best I can. Knowing I have your pity is not going to help me enjoy it. I’d rather have your friendship. Thanks.

So, that’s a few of my pet peeves. I know there’s many many more. This is a post that may end up having several volumes to it!! But I’d like it to be about more than just me ranting. What is like is for people to read this and for it to make them think. Are you being insensitive without realising it? Could there be better ways of talking to your chronically ill friend? Or even to people around you in general. People all have battles, and past hurts, we aren’t aware of. If I could give one piece of advice, it’s this, if you’re not sure if you’ve caused hurt, just ask. Knowing someone cares always helps.