Spread Awareness

Stuff That Doesn’t Mean We’re Okay

Posted on February 28, 2017 by MyFibroTeam

Life as a “normal” person is turned upside down when suffering from & living with chronic illnesses. Often these conditions are invisible. This can cause many to not understand and not believe that you’re as sick as you claim. They have to realize the despite the image we may project, we are in pain Every Single Day.

Then there’s the Catch-22.. Should I put forth an effort into my appearance when I miraculously do go out to look ‘normal’? Should I show up looking as bad as I feel? Or should I even bother going out? It’s a tricky thing — trying to live normally when your life no longer is. People tend to be surprised when we post a well-articulated paragraph on Facebook, have a good laugh, talk about things other than sickness (apparently lately ive been talking non-stop about Cub Scouts), write a highly researched, factually correct well written blog post, or bigger things like going on vacation even if it is just to go up to the cottage.

It is sad that we need to point out these things. It has hit many of us more than once that appearance, timed-just-right clarity of thought or momentary positive mood seem to adjust the perception of those around us creating more doubt in the truth that we each are really very, very sick.

So to that end, Take into account that while we may do things one day, these activities are not necessarily our norm, or it is something we have planned for well in advance. Review this non-exhaustive round up of things that do not mean we’re lying and actually okay:

1 – Articulation/Ability to Communicate Well

Admittedly this is currently one of my prominent disabilities, impaired cognitive function. However, many others can found themselves in the middle of a conversation in a rare moment of a clarity & articulation. And even myself even more rarely. These are the times where we have clarity of mind, excellent though process and the ability to communicate well. . In these moments, we are not communication like someone who is ill. It impairs the idea that Fibromyalgia and many other chronic disease do have cognative impairments.

i have actually spoken with several others with fibro who are highly cognizant in the change of their levels.. Personally I’m pretty sure my IQ has dropped at least 20 points by now, if not more.. In my mid-20s, I had an IQ of 180, thats hitting genius level. I haven’t had access to retesting, so I dont know 100% sure, but its pretty obvious to me.

2 – Laughing and Smiling

Apparently, those of us who are sick are not allowed to be happy, be joyful and positive. Yes, we are in pain & have memory/cognative issues, are drained & exhausted, have issues with sleep and deal with mental health issues, so some think it would get us down and we would not want laughter. In actuality, we need it the most because it feels good.. Smiling and laughing have little to do with someone’s health or pain levels. Those with chronic conditions have become strong from all the suffering they experience, they can still laugh and smile while in pain, which says not that the pain is low but that the need for relief is high.. Additionally laughing with others releases endorphins in the brain and it activates the release of the serotonin, both of which are homegrown feel-good chemicals which can only make us feel better.

3 – Getting Out

Being social is something we need to do. We can get both depressed and anti-social due to our chronic conditions. Some go “all out” as far as appearance: hair fixed, makeup, jewelry, and a dress. But I’ve never been one for being ‘dressy’ so when I go out I tend to be in jeans & a nice top. I’m not going out to impress, I am going out to have fun & enjoy myself.. But, I do tend to dress a little more sexy & with make-up when going to a club..

Some go out frequently. Personally, for purely social purposes, I go out once a week, maybe twice (without covid) . But, I also go out for Cub Scouts weekly which is different than social but is still getting out. I also get exercise – I walk weekly with my sister & our pups. We end up talking the whole time. I have also recently joined an exercise group that meets weekly which is also both social, but also exercise. Unfortunately, with my bff living out of town, & her also having fibro, we dont get to actually see each other that often even tho I have a key to her place.. I’d probably go out more if she was closer & she wasnt so busy with work..

So while we can & do get out, its not always a reflection on our health level. Sometimes we need to make accommodations. I’ve gone out to a bar, medicated on narcotics, to be with friends. (No, I wont drink) I’ve gone to Cub Scouts Day Camp the day after an unsuccessful ER visit, looped up on muscle relaxers & anti-inflammatories or MMJ. I had to go – I had half the equipment *&* the itinerary. Dont worry, there are other leaders because if I’m medicated, I don’t count for ratio. I’ve also usually had either a hot shower or preferably, a hot tub, when available, after almost any type of workout to minimize and even help prevent any residual issues I might have the next day or two. Unfortunately, there are still many times that I still need to cancel plans with scouting, friends, family & intimate relationships.

4 – Technological Activity

Technological socialization is all a lot of us have, especially with COVID. We tend to find typing on a keyboard or on text to be almost always easier. With the hermit life many of us live, we might also avoid telephone conversations because in & of themselves they can be stressful & exhausting. So when my whole body feels like death warmed over, but I’m usually more able to move fingers either on the laptop of cellphone. While a “activity” in no way suggests any other type of activity whatsoever, many people assume that because you are participating online that you are fully functional. Sometimes we express ourselves via social media just to stay sane.

If I post something non-health related or — shocker — something happy on social media or my blog, I wonder if others see it as me being “well,” which is never the case. Our illnesses are always, always there, even if we’re not talking about them at the moment. No matter how much we wish to ignore them, we would still prefer to make them go away.

5 – Announcements that Imply Activity

Many of us are creative people in some format even if is just colouring.. Due to COVID, many people have added extra creative outlets over the last 2 years.. But every new pursuit that is public in any form makes others wonder if, as mentioned above, people see those pursuits or accomplishments and think, “Oh see, she’s doing well.”

But you need to understand: I am on disability and I have no “real” job. My life revolves around creative outlets, medical appointments, cub scouts, health & wellness, Lilly, family, friendships and my social media & Blog. With my very messed up sleep schedule, I do dishes and laundry when I can, and attempting to keep both my pup Lilly and myself fed. Seriously. All of that is my every day. And as little as that seems to be, to my body, that is a whole freakin’ lot. And it gets overwhelming, and some days I can’t even do half of that.

But some days — or nights in my case — are better than others. And that healthy girl who lives buried in me somewhere is begging to come out and create, and sometimes I just have to listen. So when I post about the awesome stuff my Pack is doing, share images of my latest painting project, talk about my love of soccer, add to my Varage Sale store, or am chilling up at the cottage for a few days, all this is done either on a good day, or only take a portion of my day, but is the only activity.. What you see are ‘snips’, brief moments it time, a small glimpse into the parts of my life I want to share. And even then, some of those can be done while still laying in best, resting my body, but still having an active mind.

We are never fine. Whatever assumptions you make based on how we look, how we move, what we do, or even what people “think” we can do, the only thing safe to assume: we are always worse than you think we are

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The original post was first published here, While I have kept some of the content, I have also made multiple changes with my own feedback, comments & experiences.

The original author Kacie Fleming has learned about health and treatment options into the nearly six years since being labeled with fibromyalgia. She lives in North Carolina with her husband and spends her time working on her handmade jewelry.

How I Got Approved for Disability

I first started having Endometriosis symptoms in my early teens. I started having CFSME symptoms in my mid-teen. My Fibromyalgia was triggered by a bout of of mononucleosis at age 19 which got slowly got worse…

Endometriosis was diagnosed when I was 26, Fibromyalgia at age 33, and CFSME at age 37. You’d think all these large diagnoses would qualify me easily for ODSP.

Nope.

My initial submission for ODSP, Ontario provincial disability benefits included documentation for endometriosis, fibromyalgia, edible syndrome, TMJ, asthma, IBS.. All of these diagnoses…No love..

From there I hired a lawyer you turned out to be a real dick and didn’t do squat. To keep my application current, I would request reconsideration based on regular bloodwork until I was able to get the needed documents.

When I requested a change of attorney I had to go into the tribunal, on the day of a huge snowstorm, with a broken foot.. The person who denied me didn’t even bother to show so the tribunal granted me the new legal representation – Durham Legal Clinic.

By this time, I’d seen Dr Alison Bested at the Environmental Health Clinic & had just become one of her patients in her private practice. I had another diagnosis of CFSME by her staff..

The legal clinic requested additional information from Dr Bested. They sent her a very specific document. This document basically outlined what I can and what I cannot do.

It covered the four broad areas of physical limitation. Mobility issues are those such as how far I can walk, do I need assistance devices for movement, how fast I can move – slow shuffle to jogging to an (ROTFL) out & out run. Upper body tasks include how much weight I can carry, how well I can push or pull heavy objects. Stair climbing functions are how many steps I can take, how fast I can climb. Activities of daily living include my abilities to eat, bathe, dress, sleep, administer my medications, preparing food & personal hygiene. She described me on my worst day.

My worst day, my pain is high. I can not walk more than to the bathroom – sometimes not even that far. This can cause issues with elimination. I am, at that point, unable to take any stairs, or carry anything heavier than a small plastic glass of water to take medication. I can not prepare my own food, let alone eat. Showering, brushing hair, cleaning my teeth would be beyond me at my worst..

^{Issues with Mobility, Stair climbing, , Upper-body tests & Activities of Daily Living like eating, showering and sleeping.}

If you then you add my mental health health into the mix, especially as there were suicide attempts by this time, I was finally approved.

This same documentation, several months later, was used to successfully get approved by CPP-D, the disability program for Canadians.

It took several years for this process to complete.

What Does a Disability Look Like?

According to the World Health Organization, disability has three components:

1. Impairment in a person’s body structure or function, either physical or mental. Examples include loss of a limb, loss of vision or memory loss.
2. Activity limitation, such as difficulty seeing, hearing, walking, or problem solving.
3. Participation restrictions to normal daily activities. Examples include working, and engaging in social & recreational activities,

So as you can see, not all persons with disability have necessarily have a physical component. Additionally, there are medical conditions and disabilities that are not visible including diabetes, lupus & fibromyalgia.

I’m a good example of that in that I have fibromyalgia and other issues but I don’t use a cane at the moment. As a result, I don’t look like I have an impairment . Pain is invisible so they don’t know and cannot tell that my pain level is a 1/10 (I know, very funny) or 8/10 today.

COVID Vaccine Eligibility

So currently in Ontario, where I live, there is a three tier plan, which itself is made up of stages.

Phase 1 is for High-risk populations including

• Congregate living for seniors
• Health care workers
• Adults in First Nations, Métis and Inuit populations
• Adult chronic home care recipients
• Adults ages 80 and older
• Adults with the highest-risk health conditions:

From this group, my Brother-in-law, my 2 nieces & my Dad were all quickly eligible for the first phase.

Phase II is described as Mass deliveries of vaccines. This is our current phasewhere we currently stand in the process. This phase includes:

• Adults aged 60 to 79, in 5-year increments
• High-risk congregate settings (such as shelters, community living)
• Individuals with high-risk chronic conditions and their caregivers
• Those who cannot work from home
• At-risk populations

So, with that description,you’d think I would be eligible in Phase 2 for either Endo, Fobro, CFS/ME, etc.. but no.. here are the lists of conditions that apply:

Highest-Risk Health Conditions, eligible at phase I:

• Organ transplant recipients
• Hematopoietic stem cell transplant recipients
• Neurological diseases in which respiratory function may be compromised (e.g., motor neuron disease, myasthenia gravis, multiple sclerosis)
• Haematological malignancy diagnosed <1 year
• Kidney disease eGFR< 30

Of these conditions, I have none. .

High-Risk Health Conditions currently eligible

• Obesity (BMI > 40)
• Other treatments causing immunosuppression (e.g., chemotherapy, immunity- weakening medications)
• Intellectual or developmental disabilities (e.g., Down Syndrome)

Of these conditions, I have none. It’s interesting that someone who is so far they are morbidly obese has priority over someone with a heart condition..

I no longer has a BMI over 40.. At my worst, my BMI was over 50 ( I just looked that up & I’m like “Damn, Girl!”) My BMI is now approximately 33.. so, I’m not eligible for that either.

At-Risk Health Conditions:

• Immune deficiencies/autoimmune disorders
• Stroke/cerebrovascular disease
• Dementia
• Diabetes
• Liver disease
• All other cancers
• Respiratory diseases
• Spleen problems (e.g., asplenia)
• Heart disease
• Hypertension with end organ damage
• Diagnosis of mental disorder
• Substance use disorders
• Sickle Cell Disease
• Thalassemia
• Pregnancy
• Immunocompromising health conditions
• Other disabilities requiring direct support care in the community

Again no Fibro, No Endo, No CFS/ME.. Whil those last 2 are considered to possibly be autoimmune, they are not classified as such. So instead I qualify due to:

• Respiratory diseases – I have asthma. It is currently controlled & I would only need th ventolin for strenuous activity
• Diagnosis of mental disorder – I have chronic depression, have since I was 16
• Substance use disorders – I have an addiction to fentanyl – controlled & my last use was about 3 years ago.

I’m not sure what the “other disabilities ‘ entails.. But I doubt it covers the other conditions, but it’s so vague.

So, cuz I am depressed, cuz I used to need a puffer & cuz I like fentanyl a little too much, I am eligible for phase not cuz of the Endo, Fibro, CFS/ME. Apparently people with these condition are otherwise only eligible in stage 3 with the rest of Canada. That is unless their family doctor gets vaccines.

Some Disabilities Can’t be Seen

Not all disabilities are visible! In fact, the majority are invisible.. Here is a ist of many of the conditions that are not readily apparent & are ‘invisible’. This list is by no means exhaustive

• Chronic Pain
• Arthritis, both rheumatoid and osteo.
• CFSME or MECFS
• Fibromyalgia
• Mental Health including but not limited to depression, anxiety, PTSD,, bi-polar, & schizophrenia…
• Sleep disorders including sleep apnea RLS and TMJ
• Diabetes
• Epilepsy
• Digestive issues such as Crohn’s, Celiac, Colitis, & IBS,
• Endometriosis
• HIV or AIDS
• Chronic migraines
• Lupus
• Lyme disease
• Multiple sclerosis or MS,
• Severe Food & Chemical Allergies including Gluten.
• Renal failure & heart failure
• Brain injury including concussions, stroke & meningitis
• Spinal Injuries
• Fetal Alcohol Spectrum Disorder,
• Narcolepsy,
• Repetitive stress injuries like tendonitis & carpal tunnel syndrome
• Learning disabilities like dyslexia, ADHD, ADD, Dyscalculia, Dysgraphia & Processing Deficits
• , Ehlers-Danlos syndrome,
• Myasthenia Gravis
• Deafness, Blindness, Hearing loss, Speech impairments
• Autism

Temporary Invisible Disabilities include:

• Surgery
• Severe Muscle Strain/Sprain
• Pregnancy
• Episodal mental health conditions
• Severe infections

International Day for Disabled Persons

December 3rd 2020

The annual observance of the International Day of Disabled Persons was proclaimed in 1992 by the United Nations General Assembly resolution 473. It aims to promote the rights and well-being of persons with disabilities in all spheres of society and development, and to increase awareness of the situation of persons with disabilities in every aspect of political, social, economic and cultural life. It also aims to promote an understanding of disability issues and mobilize support for the dignity, rights and well-being of persons with disabilities.

International Day of Persons With Disability
December 3, 2020

Disabled Persons Have No Quality of Life, According to One Hospital

On June 11th, Michael Hickson, a quadriplegic black man with COVID-19 died in an Austin Texas hospital.

What makes this unique is that without consulting the family, the doctors determined that he had no quality of life due to his disability and other medical issues. Because he was not healthy prior to his contracting COVID, the physicians determined that his life was not worth attempting to save.

The following conversation between his doctor and his wife was caught on audio & posted on youtube

Doctor: So as of right now, his quality of life — he doesn’t have much of one.

Melissa: What do you mean? Because he’s paralyzed with a brain injury he doesn’t have quality of life?

Doctor: Correct.

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Hickson was refused food or treatment for 6 days

In the YouTube video show at the bottom, the doctor can be heard saying “he will have lines and tubes coming out of his body… That’s not quality-of-life.” It is if they sustain you while your fight a disease.

Apparently my definition & his/the hospital’s definition of quality is vastly different.

We love be in a culture that doesn’t see disabled life as quality despite the fact a quarter of the US population & 22% of the Canadian population are living with a disability in some form of another.

So, for persons with disabilities, this is super scary. Does this mean with my multiple medical issues, I would not be considered ‘on worth’ saving aswell?

With this l MD of attitude in the medical community, us with disabilities have every rightly to be concerned & even afraid.

So, when you see me repeatedly pushing about masks, paying attention to disabled (& elderly for that matter) people, and maintaining social distance I have a very valid & legitimate reason for promoting this issue.

Do Not sweep this under the rug. Your disabled friends are in serious, potential danger. Our lives are at extra risk.

We must unite and fight this!

Chronic Illness Bingo leads to Acceptance

This is kinda like the get to know style of bingo, but it’s just for you. Check off what applies to you.

I originally just posted this on my regular social media, but choose to write about here.. The reason I do is the reaction of a friend of mine, Susan.

Late last year she was diagnosed with Rheumatoid Arthritis. Now, she has been struggling with acceptance that her life he’s been permanently altered through no fault of her own. Recently she say the post on my social media of my bingo card (see below) & noticed that she checked the few spaces I had empty. She then got curious & looked at the rest of the card noticing that she actually checked a majority of the boxes aswell.

This was her “Ah-ha” type moment. And realized “I have a chronic illness.” I think this realization, and acceptance of the hard truth has actually be a relief for her. She’s realized that there are limits and she has to learn where her limits are. But she’s no longer stuck and is able to move forward.

While I’m not happy that my post gobsmacked her in the face with the truth, I am glad she’s got the acceptance and is moving forward.

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See where my 3 bingo lines are. How full isUis your card? I know someone who actually checks each box. 😦

She Saved Me!

In November of 2011, a little puppy was born. In February of 2012, she became mine.

Prior to us getting her, I’d had alot of issues. My relationship was severely toxic & abusive. I was no longer was in contact with close friends & family. My health was rapidly deteriorating & my disability made me almost house bound. My depression started going into overdrive & I did not deal well.

As a result, I have lost track of the number of suicide attempts I had over the first 5-6 years of our relationship. It was so bad that I wrote on my meds list “In the event of a Suicide Attempt Do NOT Let me go home”. I was on 5 different antidepressants & they were not mixing well either.

But my life Changed when in February 2012 when I was given a life to take care of. Lilly.

I now had a “reason to live.”

She became my world. She was 100% mine. My partner did close to nothing with her on his own. He didn’t feed her, groomer her, take her out. He did occasionally play with her, but I don’t think he ever loved her. But I did.

So despite the increasing toxicity, I was able to survive because I had her. I had to be around to take care of her. I honestly believe, she would have suffered if I was gone & left with him.

She was my world. She was the reason I got up in the morning – literally. I had to take her out for a walk in the morning to do her business.

My relationship came to a sudden end when his son overheard his Dad threatening Lilly’s life. Now I don’t know if the boy knew his Dad was talking about Lil, or if he thought the treat was towards me. Either way he called 911. My ex was arrested and charged with Uttering Death Threats I believe the charge was.

I took Lilly & moved back home to my parents despite their misgivings. I got counselling, months and months of counselling. I was able to focus on my health. I reconnected with old friends and made new ones. I managed to maintain friendships from the time I was with him despite him. I am so lucky to have both of my best friend’s back as two of the closest people to me. I’ve rebuilt my relationships with family, my parents, my sister & her family, my brother & his family.

I am happy, reasonably healthy, and alive. Thanks to her.