Chronic Sitting Shoes

#chornicsittingshoes is a hashtag I created in hopes of inspiring others to come and join me on a little journey with shoes.

I love high heel shoes. Love them, due to dislocating ankles and other large joints wearing them can be more than challenging. I feel better when wearing high heels. As though I am getting dolled up to go out somewhere. Recently I was in the hospital again due to complications associated with my mast cell disease, in addition to my POTS and EDS.

It is a simple little pick me up to crawl to the closet open the door and look at my shoes. Now some shoes haven’t ever been worn outside because I am after all chronically ill and sometimes I can’t get to events to wear them.

This is why I thought of creating this hashtag #chronicsittingshoes we don’t need to give up something simple like shoes. We may not be going to prom, we may not make it to graduation, so why not enjoy your shoes in the comfort of your own home.

After I have stared at my shoes and missed wearing them for a long time I thought, “why not just sit around in them…” That is exactly what I started to do. I would grab a pair and put them on while I am in bed. For me my chronic sitting shoes are nothing to be ashamed of, they are a simple joy in my life and I will not deny myself this simple pleasure.

Join me on social media to bring awareness for rare, complex, and invisible diseases. Please use the hash tag #chronicsittingshoes when you are sharing a photo of your sitting shoes.

I remain hopeful always.

There is always something to be grateful for, there is always something good in each day.


Want to share your story? Please contact me and you can be interviewed for my blog. Here some of the interviews I have done.

I am not my diseases. I am a survivor, a rare disease fighter and I live with invisible illness. My YouTube channel is about me and my journey and how disease tries to rule my life.

Find me on twitter @annawerrun, on instagram @annaweds, and on Facebook

The EDS support page for Victoria that I created after being diagnosed can be found here

You can also find me on Facebook in these groups.
Living undiagnosed? Need a community of people going through a similar journey? Check the group here

Did you have thyroid cancer and have a radical neck dissection? Want to meet others facing a similar journey?

Live on Vancouver island and had thyroid cancer? Check out the thyroid cancer group for Vancouver island

Live in Calgary and had thyroid cancer? Check out the thyroid cancer group for Calgary

Live with EDS and are in the Calgary area? Looking to meet others living with EDS?

Living with chilblains aka perniosis? There is a group for you!

It’s important to know you are not alone. There is support here and you are welcome to join groups and know you can share your journey.
Anna Werrun

Interview With Angela Arndt


Join Angela Arndt as she shares her chronic illness journey living with EDS, and fibromyalgia.

Learn about EDS here

Find information of fibromyalgia here

Where are you from? Tell me a bit about yourself. What is your name, age, and disease/invisible illness/mental health?
My name is Angela Arndt. I’m in my fifties and I have Ehlers Danlos Syndrome and fibromyalgia.

When did life change for you?
Life first changed for me after I began teaching school. As a first year teacher, I was warned that I would get everything the kids would bring in, but when I got sick, I couldn’t shake it. I was newly married with two step-children and had worked so hard to get my Masters degree, I’d worn my immune system down. The school building wasn’t airconditioned and did I mention that I lived in South Carolina? My classroom was on the third floor and I ached every day, climbing the stairs. I didn’t know what was going on with my body and I had to leave mid-year. It was five years before I could work again.

What was life like before diagnosis?
Since EDS is genetic, I’ve always had health issues. I can remember being at summer camp, limping because the bones in my foot was hurting. My doctor told my mom I might have a touch of arthritis and to keep away from concrete floors. Not sure about the logic of that.

Because of my age, people didn’t know about fibromyalgia or EDS. I’ve been told that I’m faking it, depressed, anxious, should go have children (yes, a doctor said that), and had chronic fatigue syndrome (or “yuppie disease” as it was called then). You can imagine the looks, the whispers, and the “helpful advice” I’ve received.

How has your diagnosis changed your life?
The title, “disabled,” regardless of what disease came with it, changed everything. Because I couldn’t take care of myself, we decided not to have children. My Masters degree is largely wasted, although I am writing a little, as I’m able. I made more money than my husband, so our lifestyle changed drastically.

Please describe the best you can a day in the life of you?
I get up at 5:30 a.m. because it’s my best time to write. Hubby gets up to take the dogs for a walk because I’m barely able to move. I take my medicine, then read my Bible, pray for my family and friends while I wait for the pain to subside. When I’m able, I get a cup of coffee and then write, answer emails, update Facebook, etc. My mother moved to our town after my stepfather passed away, so we incorporate her doctor visits and medicine refills in with mine. My good hours end at one and I usually go back to bed at two. When I get up, around three, I’m in pain again and I can do very little except watch television.

The pain I feel each day is constant, even with the medication I take. While my lower back, hips, and knees hurt most of the time, my shoulder and neck is less constant, but just as intense. I also have migraines that usually last a few days, but as of today, I’m starting my fifth week with this one. I’m going to see a neurologist at the end of the month to see what’s going on.

What was/is the most challenging thing you have faced because of your diagnosis?
The isolation has been the worst. Even with all the physical pain, nothing can touch the pain of having friends and family who don’t want or care to understand why you can’t keep or make plans. I have family members who aren’t speaking to me because I was too sick to come to a dinner. We don’t invite anyone over because I can’t do housework. Even with the “world wide web,” there are very few who truly understand the pain in my body and my heart over the things people say and do.

Do you find that you can keep up with others?
No, not even my 87-year-old mother.

What would you tell others living with your diagnosis?
To be informed. Don’t rely on anyone knowing everything about your condition. And don’t let them tell you that you’re not sick when you know you are. Like I used to tell my students, you have to do your homework.

What would you like to tell others that don’t live with a similar diagnosis?
Try to be more understanding when someone has to change plans or even refuse to make plans because of their health. There is no way in the world that you truly know how they feel, don’t try to read anything into the refusal, just take it with genuine concern. The Golden Rule is always a good place to start, “do to others as you would have them do to you.”

What have you learnt on your journey?
That doctors are very busy. It’s hard for them to hear everything they need to hear in the ten minutes they see you in the office, especially after you’ve been in their waiting room for over an hour. If that doctor does understand (or want to understand), find another one. Ask for referrals from others who have similar symptoms. Join a support group and do whatever you can to make yourself better. You can’t help anyone else if you don’t help yourself first.

Is there anything you would like to add about your journey?
Just that God can still use me, even as sick as I am. I can still pray and encourage, even from my chair or my bed. As long as I can do that, I’m still a productive person.

Did you want to include a photo of you?
(I think you’ve already gotten a photo, right? If not, just let me know.)

Thank you so much Angela for sharing your journey with me and the world. Support groups make all the difference in ones disease/chronic illness journey.

Hopeful always.


Interview With Laetitia


Join Laetitia as she talks about her journey living with EDS, Chrons Disease, Dysautonomia, general anxiety, and fibromyalgia. Please be respectful of her and her journey.

Learn about EDS

What is chrons disease?

Dysautonomia information can be found here

General anxiety

Information on fibromyalgia can be found here

Where are you from? Tell me a bit about yourself. What is your name, age, and disease/invisible illness/mental health?
My name is Laetitia, I’m 27, almost 28. I’m married. I was born and live all my life in the South-East of France (so, sorry for my english).
My diagnosis? Ehlers-Danlos (probably hypermobile) and all the associated symptoms (lots of allergies, dysautomia, scoliosis and so on), Crohns disease, general anxiety and fibromyalgia.

When did life change for you?
In 2011. I had more and more pain all over my body, diarrhea all the time. I knew something was changing. I felt that the “healthy” life was over.

What was life like before diagnosis?
As a child and teen, I was quickly tired. I had lots of bruises and poor balance. I fell often. Asthma. I’ve already had lots of food allergies and intolerance. Lots of digestive problems. But I was very active.
At 12, my left knee was very painful. They said “it moves, don’t worry”.
As a teen and young adult, I wasn’t aware about my hypermobility. I’m thinking it’s fun but normal.
At the university, I was more and more tired. I didn’t want to go out at night. I was sick often.
During my PhD (started in 2011), it was worse. Some days, I can’t move but I have to. My family and I were worried. What was the point with my digestive system? With my body and my joints?
For my Crohn, it took almost one year for having a diagnosis (2012). But for my EDS it was another story. In 2012, I was diagnosed with ankylosing spondylitis and I take a treatment for that. But I saw no change and I can’t walk anymore. So I decided to get a cane even if my RI didn’t want to. I can walk.
Years after years, I knew that my AS diagnosis was wrong. My joints dislocated more and more. My pain didn’t match with AS. Something was wrong.
Last year, in 2016, after lots of research, I was going to a very old RI. He thought I might have multiple sclerosis or a neurological problem. I did lots of exams. Again. It’s not that but he confirmed I don’t have AS.
So, I found an EDS specialist in my city. And, at the first appointment, it was obvious for him: I have EDS. My diagnosis battle was finally over.

How has your diagnosis changed your life?
I was sad ’cause having several chronic illnesses wasn’t a good new. However, it was a relief ’cause I can put a name on my symptoms. I know what I have and I can learn to live with.
The EDS specialist prescribed me compression clothes, splints for my finger joints, oxygen and a new pillow.
I bought 4 canes to match with my clothes.
I sold my high heels shoes.
I get the disabled status.
I had to stop working (it was very hard but I have to).
I accept that I need help for my day routine. Fortunally, I have a wonderful husband.
I learn to take care of myself.
We move in another home, ’cause the stairs were killing me.

Please describe the best you can a day in the life of you?
On my best day, I can go shopping with my mom (with my cane) for some hours even if I pay it back for two days. Moreover, I can do some cooking or the laundry. I’m always afraid about the diminution of the number of “best day”.

What was/is the most challenging thing you have faced because of your diagnosis?
My appearance was changing (no more high heels, compression clothes, bruises and so on …) and can’t work anymore. I have a PhD and I’ll never use it anymore.

Do you find that you can keep up with others?
It’s hard, but, I have two marvelous best friends. I can text them “I dislocate my hip, I’ll be late.” without problem or shame. I’m very lucky.
However, with unknown people, it’s very difficult for me.

What would you tell others living with your diagnosis?
Don’t be ashamed. Having a cane and/or a wheelchair is not your fault. You can be pretty and good looking even if you are disabled.
Your pain is real, so take care of you, please.

What would you like to tell others that don’t live with a similar diagnosis?
I’m NOT too young to be disabled. I’m not lazy, I’m a warrior ’cause I live with chronic pain and several chronic illnesses.

What have you learnt on your journey?
I’m stronger than I thought.
Medical errors are a burden.
Even with my disabilities, I can be happy.

Is there anything you would like to add about your journey?
My life is very different that what I imagine when I was younger; but it’s okay. Once I accepted it, it was easier.

Thank you Laetitea for sharing your story with me and the world.

Hopeful always.


Steps May Heads Art Journal

I decided to take up art journalling just over a year ago. My Doctor advised that I take up a new hobby to help deal with both my physical and mental illnesses. I had hobbies, such as dancing and zumba classes that I loved but my worsening conditions meant I had to stop.

I felt lost and hopeless. Uninspired. My mother had taken up art journalling and had told me about how it soothed her, emotionally, as well as keeping her occupied when she was poorly with Bipolar and Fibromyalgia. I was tempted to have a go but didn’t have a clue where to start.

Over a cup of tea my mother said something that made me decide that art journalling was to be my new hobby! She said. . “The great thing about all art is that there are no rules! Your art journal is just for you. It doesn’t have to be fancy. Even the simple act of drawing scribbles or painting a page can be incredibly soothing. Try it and see.” And I did. And my mother was right. Before I knew it I had started expressing my emotions, my fears, hopes and even anger on pages that started out as dots and scribbles and turned into something amazing.

My mother inspired me with her own amazing art journals and paintings and I thanked her by making her pages that symbolised my love, appreciation and gratitude for all that she does for me. For always encouraging me to try something new and reassuring me that no matter what happens, I am strong enough to adapt.

Keeping an art journal has helped me recognise certain issues I have, certain challanges I must face. It’s helped me to come to terms with my EDS, Fibro and BDD (body dismorphic disorder) diagnosis and helped me to celebrate them in a way and accept them as part of who I am.

To anyone out there who is facing hard times, I would so recommend trying out art journalling. It’s a type of magic that allows you to explore and learn about yourself and see how creative and unique you really are and lets you look back on how far you have come. Since those first few dots and circles on a blank page, I have covered my page in zebra stripes that I no longer struggle to accept. Instead I am proud of my stripes. Of my fears that I face every day. We are as unique as every piece of art we make. Be it music, theatre, painting, fashion and all the other amazing things we can enjoy and be part of if we reach out to eachother with our art.

My new hobby has been a life saver for me and has introduced me to some like minded friends. My next project is to hopefully make a colouring book that will raise awareness and possibly money for research into EDS, Fibro and mental illnesses. All these illnesses are very close to my heart and I hope that one day, my artwork and my poetry will make a difference to someone. Somewhere. I remain positive and forever hopeful 💖❤

Thank you Steph for sharing your lovely art journal with us. Remaining hopeful for you now and always. đź’—Anna

Check out Stephs blog page here

Mast Cell Disease and Me



There are many aspects of this disease that baffle those around me. Mast Cells cause a reaction in your body when you have an allergy. Your mast cells attack the allergen and make you feel ill. This induces sneezing, coughing, runny nose, and other unpleasant allergy symptoms. Mast cell disease is very different from this and much more complex. It isn’t something that is cureable, there are treatments available, but nothing is gauranteed.

When people ask me what I am allergic to, the answer is a long drawn out one. My body thinks I’m allergic to everything, I am not actually allergic to everything but mast cells in my body have convinced my body that I am.

Confusing? I know.

It’s as though my whole body is allergic to everything. I hive, I flush, I end up with a little less then fifty of Mast Cell disease symptoms. Here are some photos of what it looks like. These are all of me.

Different parts of my face can swell and turn bright red, other times my skin appears scaly like after touching something this is a contact allergy. Please note I am not wearing make up in any of these photos, my lips turn bright red sometimes during a reaction, they itch, and eventually swell. Other times they swell up huge along with my nose without changing colour.

Mast Cell disease can seem at times like it runs my life. Flares happen daily, I can never tell which kind of symptoms I will experience. My symptoms range from Vertigo, vomiting, migraine, and abdominal pain/swelling are some of my hated symptoms. A more complex symptom list I experience due to mast cell disease, chest pains, vomiting, diarrhea, weakness, abdominal pains, rashes, feeling to hot, or too cold chills, palpitations, migraines, fever, tachycardia, itching, joint/bone pain, cognitive impairment, skin on fire, numbness and tingling, anxiety, weight loss, sinus problems, runny nose, mouth sores, ringing in ears, flushing, sweats, rashes that last months, passing out, extreme fatigue, itchy mouth/throat, sore throat, and lowered body temp. These symptoms and all the other symptoms from mast cell disease are debilitating. Many days I am unable to leave the house due to being over reactive to everything, I have a vog mask and RZ masks that help to protect me from some smells.


My epipen is something I keep on me all times. Mast cell diseases are different for everyone some people only have a few triggers, others have many.

How to better your quality of life living with mast cell disease. First of all avoid triggers, sometimes this can be hard to pinpoint because it may seem something we are fine with end up reacting to the next day. It’s important to not cut everything out, at least in my experience, as this made me super dehydrated, malnourished and cranky (at least this is what I was told by my doctor).

For me smells really impact my quality of life, once I realized this and started wearing my mask out my sinus problems improved. Who would have thought that mast cell disease was giving me chronic sinus infections. This is actually something mentioned on the Mastocytosis Canada page. It is a real and not fun symptom of mast cell disease. Not that any of them are fun. Having an infection can make you feel worse than you need to. I am beyond grateful for a dear friend of mine who gave me my first mask, this mask is something that has saved me time and time again from smells invading my body. Musk is one of the worst smells for me, it makes me sick, I end up with a butterfly rash on my face.


Do things you love, make sure to enjoy the simplest things because you matter. Your happiness and your out look are key. There may not currently be a cure for Mastocytosis, idiopathic anaphylaxis, and mast cell activation syndrome. There is always hope for a better tomorrow. One where there is time to live life as funny as you are able. Living happy is a perception it’s not owning the most things, or traveling, it is how you express gratitude. It is truly focusing on the good, not ignoring the bad, but knowing there is balance in life. To get to any form of acceptance one must realize the journey brings both good and bad.


Not everyone will understand your illness. The comments of “you look fine,” will always make my skin crawl. Invisible illness like mast cell need to be talked about. People living with mast cell disease should share their stories in hopes of opening other people’s lives. If we just complain about there being no awareness and we don’t aim to raise awareness, nothing will change. Give your illness a voice for you, and for others like you. You got this. You are not alone.

You can find me on the following social media @annaweds on instagram @annawerrun on twitter and find me on Facebook

Check out my YouTube channel here

I remain hopeful always.


Postural Orthostatic Tachycardia And Me.


What is Dysautonomia? Dysautonomia is dysfunction of the autonomic nervous system. What is the autonomic nervous system? This is a nervous system in the body that controls things you don’t need to think about, like breathing, regulating your heart beat etc.

POTS (Postural Orthostatic Tachycardia Syndrome) defined. Postural, refers to the position that brings change in POTS patients. Orthostatic, caused by the change in an upright posture. Tachycardia, meaning a fast heart beat with 100 beats per minute or higher. Syndrome, a group of symptoms that make up an illness.

Isn’t that a mouth full! Postural orthostatic tachycardia Syndrome (POTS) is an abnormal rise and fall in BP (blood pressure). POTS usually causes tachycardia. For me my POTS can cause my BP to be 161/144 with heart rate of 117, or it can be 80/40 with my heart rate at 120 and higher. This is all caused by me simply standing up.

POTS causes me to experience syncope (syncope means a loss of consciousness aka a black out). When I have a black out, I can not control what my body does. I have blacked out and had a seizer. My body feels weak, and everything literally goes black. When I first started blacking outs it would affect my eyes, my vision would go balcony. I wouldn’t be able to see a thing, but I could hear things going on around me.


Eventually my POTS attacks got so bad I was falling no matter where I am when this happens I fall, if I am feeling a black out episode coming on I will not move. To even out my heart rate I will lay on the floor and elevate my legs up a wall. My BP isn’t usually fixed for 30 minutes to an hour. The racing heart can be heard in my ears, my chest feels as though it may explode, I over heat, I sweat, chest pains worsen, the dizzy spells make it impossible to move.

POTS has caused me to full on bail, this is problematic due to my Ehlers Danlos Syndrome. Falling has caused me to dislocate joints, anything from wrist, knees, fingers, toes, jaw, and other painful dislocations.

Days where I can experience black outs I do no venture out as it is not safe for me to do so. Black out days are spent surrounded by pillows and remaining elevated to prevent catastrophe.

As you can see in the photos my blood pressure is all over the map, this is due to POTS. My POTS doesn’t behave like the typical POTS. My blood pressure changes drastically as does my heart rate.

The usual treatments for POTS are: increasing salt, increasing fluids, electrolyte replacement, calcium channel blockers, beta blockers, compression stockings, and exercises. Avoiding certain things, such as putting your arms above your head, extreme cold or extreme heat. Being immobile can make POTS symptoms worse specially if you have deconditioning POTS. There is hope for getting some quality of life back. This depends on you and keeping up with the things you need to do. Like listening to your doctor, taking your meds and avoiding POTS triggers. Eating smaller meals and having salt with your meals can make a difference in energy. Large meals  makes all the blood in your body go to the digestion of your food and in POTS this can cause black outs, at lease in my experience. I can also black out due to stress, standing to fast, getting up from laying, I have sat up and blacked out before.

I may black out often due to something I can’t control. But I can control how I feel mentally. Never give up hope. There is always hope. If you feel alone and you need someone to talk to reach out. POTS isn’t something you face alone.

Things I have done to help my POTS, going for a walk, drinking a lot of water (I find I feel dehydrated all the time), salt (I make my own salt pills with rock salt and veggie capsules). I used to try electrolyte pills, drink Gatorade, take electrolyte drinks, but due to my mast cell disease I started reacting to them.

Remember things can improve, your mentality is key. Stay on the train of positive thoughts!

Hopeful always.


Ghosted A Poem By Anna Werrun

I have been ghosted.

You use to message me,
Check up on me,
Wanted to hang out.

Gradually you pulled away,
I see the signs now looking back.
You ghosted me,
You left my life.

The calls, messages and interactions came to a Halt.

Did you die?

No just our friendship died…
But when we were close,
I never thought you of all people would ghost me.

It took me years to figure out the problem wasn’t me.
My illness makes people change.
This is a sad but true fact.

Some people can’t handle the illness,
It reminds them of mortality.
Others don’t want to see us decline,
And some people can not handle it.

It takes time to heal,
To get over the sting of a
Friend, a family member, or a spouse leaving us. Throwing us out like garbage. As though they are saying without words, “you are defective, I have no use for you anymore.”

People leave,
This is a fact.

I am here to tell you,
I will not leave.
I will stay.
I will do my best to be there for you in every way.

A true friend will stick with you through thick and thin. If someone leaves you due to your illness, you are not to blame.

Sickness and illness are not things everyone can cope with.

Ghosting is cruel.

My heart breaks,


And shatters from the stories I have heard. And the ghosting I have experienced.

The ghosted are hurt.

To those of you whom have ghosted others, put yourself in the sick persons shoes for a day.

Seriously think, if you were sick would you want those near and dear to you to give up on you and leave you?

Did you think for even a minute about anyone but yourself?

How harsh life can be, when you turn your back on those you love.

The hurt that I feel, I know others feel too…

Find me on twitter @annawerrun on instagram @annaweds and on Facebook

You can check out my many awareness videos on YouTube on my channel here

The Bucket List Project; Haunted Tour Calgary and Banff


For many years I have wanted to lead my own haunted tour. Due to declining health I have put this on the back burner. I may not be able to go everywhere I have wanted to go, but I was able to get to see some of the haunted places in Alberta. These may only be the tip of the iceberg, but I am proud of myself for being able to accomplish what I did.

While being in Alberta I really wanted to do this but didn’t have to means of transportation. My husband came for a visit and offered to drive us around the city.  Over the course of a few days I was able to get all the photos I could of the outside of haunted attractions.

This was a trying challenge. It is still a project that is in the works. I will do my best to finish this, I know it will take many years of planning and saving my spoons to do so. Energy is something that seems to fade easier and quicker these days. Pain is an unwanted friend, and with me day in and day out. Pain and low energy make life a challenge, I won’t let it stop me from enjoying the simple things in life when I can

I am happy to announce that having some every I able to do a haunted Calgary and a haunted Banff tour. I am forever grateful and appreciative to the people whom helped me to accomplish this huge feat. I am truly blessed with people that understand and are willing to help me. I can cross off my list being a haunted tour guide!

Due to brain fog that is worsening I took photos of my tour to remember my tour. I used a program to create comics for the purpose of a virtual tour. Please bare with my spelling and grammar. Enjoy my little tour through haunted Banff and Calgary. I hope you enjoy my comics! You can also find my YouTube video of these here on my YouTube channel


Steph May Heads POEM “The Monster In The Mirror”



By Stephanie May Heads

She won’t shut up
Won’t leave me alone
She won’t stop
Till I’m skin and bone

Just how we wana be
But not rationally
Breaking mirrors is a dream of mine can’t make it reality

Like a constant loop of music
Repeating in my ears
Bullying me, bruising me
For many of my years

Cutting at me, picking at me
Pulling at my hair
Laughing at my make up
U won’t wear it bitch, don’t dare!

Stop eating u don’t deserve it!
Go on, ram it down your throat!
You make vomit, make me sick
Look at you , you’re a joke!

Buy the clothes, don’t buy them
Get a bigger size
Cut things off, bleach them twice
I wana pull out both my eyes.

However much I lose
It won’t ever be enough
The mirror cries at me
And I stand there feeling crushed.

Who is it that is lying?
I can see it all looks vile
Like a candle face, melting,
Dripping down like Dahli’s style.

I hate her, I detest her
Her feelings are the same
All our insecurities
It is us she always blames.

The one thing that I did
That helped me to stay sane
You took it all away from me
And so you won again.

Nothing of me works right
Neither body nor my mind
In a way I can’t believe my eyes
This illness makes me blind.

To me it’s very true
it’s my reality
To me, self loathing and being ashamed
Is my speciality.

I wish I wasn’t like this
Wish I was beautiful
Attractive and confident
It would be wonderful.

Dysmorphia, anxiety,
Depression, BPD.
All these illnesses and sadness
They’re us, they’re you and me.

Check out Steph May Heads other posts here on her page

You Are Sick After All…

IMG_4524When people hear that you’re sick the assumption start flowing in.

“Oh you can do art so that means that you can work.”

“You seemed fine when I see you so you can’t be that sick.”

“You don’t wear your braces out all of the time so your joints aren’t that bad.”

There are countless things that people say to you when you are dealing with chronic illness and they are still healthy. People mean well and are unsure of what to say to someone who is chronically ill.

People form their own opinions. Whether these people are older than us or younger than us or the same ages us. Sometimes ignorance seems to be the only thing that people can relate to. Being ignorant about my illness is not going to help me. It all comes down to your denial about me being sick or you just not believing me.

Recently in a fairly popular tv show there was a scene where two girls did something nice for a young girl with chronic fatigue syndrome. The two girls later saw the girl playing volley ball and confronted her about it. Turned out the girl with chronic fatigue syndrome had a healthy twin. The girls then apologized to the young girl with chronic fatigue syndrome. This did shed a little light on the chronically ill and implied there are no good days only bad days. In my mind it misrepresents chronic illness, because we do have good days they maybe few and far between but they exist. We should never be mocked or condemned for doing something for ourselves on a good day.

It’s extremely frustrating to have to carry around a black folder with me that has countless information in it for other doctor should I end up in the ER and need treatment. I have to carry and take medications on a regular basis.

I feel like I’m a jerk when I tell people not to use scented products around me sometimes they don’t bother me but most of the time they do.

Then I have people commenting on why do I have a tattoo why do I have died hair. I’m sorry what part of my life do you think you have full control over. Am I supposed to put everything aside that I want to be or that I want to experience for example having red hair or something that I’ve always wanted to have I’m not allowed to do that because you think I’m sick. Which I am, yes I am sick. But I’m not gonna live in some sort of self-pity cage and be depressed about everything all of the time because that’s not who I am. I’m going to try my best to do things I want to do and thus the reason I have been working on my bucket list things which I have explained before in other blog post that those things are very simple.

Dying my hair was a huge bucket list thing for me. A friend of mine dyed it for me and I am extremely grateful to her and I love it and it’s something I wanted to do it for me.

I find it ridiculous in my opinion when I am dealing with life-threatening diseases that someone tries to parent me, by discouraging me from living.

I know my disease and what they are doing to me. Stop telling me what to do, because you do not have my diseases, nor are you my parent. You also do not have the education Doctors do.

I am not giving up on myself. What does me not giving up on myself look like? Doing things I love. Trying things I wanted to always try, learning things I was wanted to learn in the time period that I have left. Whatever the amount time that is whether it’s a week or another 10 to 50 years no one knows. Point being I shouldn’t have to explain myself nor should I have to justify anything that I do because it is my life you don’t justify everything that you do.

So get off my back, back up and deal with your own crap and stop trying to parent to me. Stop telling me I’m wrong. Stop telling me I don’t know how to take care of myself.

I’m doing the best I can for myself.

Take care of you fellow rare and chronic illness fighters. Living life when your sick should not be something you have to justify. Be happy while you can, relish in life on your good days. Be a free spirit, be you, you shine brighter when your true to yourself.

Hopeful always.


PS I will leave you with these photos of my Alice In Wonderland Cosplay enjoy.