It’s Wednesday today and I thought I would take a break from articles and share some personal tidbits about my daily life. What it’s like being on disability and how I cope with having too much time and not enough to fill in the hours.
My mornings start by waking up anywhere between 7:30 am and 9:00 am. Sometimes I linger in bed and read or watch Tik-Tok. It depends on how bad the pain is in my knees, or how much sleep I got the night before.
Next, I make my coffee and breakfast. Lately, breakfast consists of two pieces of toast, some jam, and a piece of fruit. Sometimes I’ll make eggs for added protein.
While sipping coffee, I hop onto youtube and catch up on my subscribed videos. Today, I’m watching my favorite witchy channels about celebrating Imbolc. I’m currently watching The Cottage Fairy who also suffers from anxiety and is an introvert. These are the people that I’m drawn to. Her videos are calming and soup for the soul.
Then I spent some time responding to emails, and catch up with friends on social media sites. Sometimes this goes on for too long and before I know it – it’s almost noon.
Today, I’m getting lost in the YouTube algorithm of Fairytale cottages and dream homes. What I wouldn’t give to live in a rural place like this.
I’ll take a break, exercise, do my stretches, maybe sit outside if it’s a nice warm day. It’s been too cold and windy for this lately. Or I’ll do some tidying up in the kitchen. Today, I need to take out the garbage. Later, I’ll see my dad.
Every couple of weeks, I order in groceries and will spend an afternoon in the kitchen doing food prep and plan meals for the week. I’m trying to get better at using up all the food in my fridge before shopping again. I’m also trying to grow some of my own herbs. Because every penny counts.
Afternoons vary. Sometimes I’ll have a nap if I was up all night due to insomnia. Sometimes I’ll write or work on blog posts. Sometimes I’ll stream music and work on art. It really just depends on how I’m feeling.
My hands have lost dexterity, so I don’t work on crafts nearly as much as I’d like. Arthritis is often a crippling disease.
Evenings are sometimes the worst when you live alone. I used to entertain weekly or sometimes twice a week. It gave me motivation to keep my condo clean. It gave me something to look forward to. I’ll get to that again in the spring once I’m social again. For now, the isolation is needed.
I’ll do more reading in bed, or stream my favorite shows. Or watch movies. Or hop onto Discord and chat with new friends. Or twitter to chat with local friends. Sometimes I’ll order in dinner. Sometimes I’ll get the fireplace going.
Other times I have a very long bath which helps with the chronic pain and sore muscles. And every night, I try and get into my office and do a Tarot reading. Sometimes I’ll work on meditation and intentions. Sometimes I’ll write in my journal.
I’m looking forward to longer days. Where I can sit outside and read again. Or have a nap on the sofa. Or entertain friends for drinks. Or just go for walks again without worrying about ice.
I do what I can as pain allows for it. Pain rules my life but it doesn’t define my life. I do the best I can.
This blog — has kept me going through dark times. And now, I love the direction it’s heading in and the content I’m working on. I’m excited to share this new chapter of my life with you.
Thank you for being here with me.
If you’re on disability or medical retirement – what do you do to pass the time?
It’s Saturday morning and I’ve just sat down for my first cup of coffee for the day. The sky is clear outside and the sun is shining. It’s early for me, I woke up out of a deep sleep around 7:30 am and decided to get up for the day.
Yesterday was my birthday and it was pretty low key. I was overly emotional and I don’t know why. I think part of it is what’s going on in Europe. My family is from Europe and so, it’s hitting pretty hard. It brings up a lot of feelings about why my family moved to Canada. I wrote about it yesterday and then deleted it because it’s not my story to share.
I decided to say “screw it” for eating healthy for the weekend. I deserved a treat. I ordered a small grocery order in from Walmart and bought a small black forest cake. It’s a cake that we used to eat often at family dinners.
I lazed around all day, did some writing and then headed to my dad’s at six pm. We had a nice visit. His memory goes in and out. Towards the end of the visit he asked me what day it was. “Is it the 25th today?” he asked me. I nodded, and had already told him it was my birthday. “Your sister told me it was the 25th. Happy birthday.” And that made me tear up.
It was close to 8:30 by the time I got home but I wanted to wait until he fell asleep. I told him I loved him, over and over again so he would remember. At one point he said, “Thanks, I needed that.” They lost his hearing aids, so I don’t know how much he got out of the conversation. But he knew he missed me. I couldn’t get to him for two weeks because of my knee.
I ordered in some McD’s, which of course, made me feel sick after. Had a piece of cake. Responded to a slew of texts and messages on Facebook. This time I just did a generic message because I’ve been feeling pretty down. The cake was delicious. I’m going to have another piece. It’s a tiny personal cake which is just fine for one person.
Being single means buying your own food and cake. This was the first time I had done something like that, and it felt good. I’m 45 now, I can do whatever the fuck I want to do.
As for disability benefits, I had a follow up call on Thursday with my case manager. The good thing is she realizes the gravity of my illness. She said we’ll see how your appointment goes. If you eventually can get to a place where you can return to work, or if it comes down to improving quality of life, we can help you with that too. I admitted to her that it was more about quality of life. I’ve given up the notion of finding any employer who would hire me given my absence history. I can’t go back to government work. Nor do I want to.
And so, this birthday, felt a little heavier. I’m missing my mother terribly. I’m missing my dad. He’s still here, but it’s not him anymore. And for the first time last night in a long time, I questioned my decision about living alone and staying single. Sometimes I just miss having someone to talk to everyday.
I know I said I wasn’t going to post today but after a minor disagreement with a family member this morning about attending a birthday party, I thought I would share some information on joint instability and what it’s like to live with chronic joint pain and dislocations.
This is one of the reasons that I started this blog – not only to vent about daily issues but also to promote awareness around this horrible disease.
Hypermobility Spectrum Disorders
As a small child, I was diagnosed with hypermobility joint syndrome. Or back then, they called it “knock knees.” It was through recent research and chatting with other “Zebras,” that I learned the this term is outdated. People who live with hypermobile joints are now diagnosed with Hypermobility Spectrum Disorders or Hypermobility Ehlers Danlos Syndrome (hEDS).
Here’s a picture of me in 1985 after corrective knee surgery to stabilize my right knee. It was such a traumatic experience that I’ve been afraid of surgeries since.
What is HSD?
Joint hypermobility in layman’s terms means having overly flexible or extendable joints. Some people may experience full dislocations – where the joint pops completely out of place. Or partial dislocations, also called subluxation of the joints. Others may experience locking or popping of the joints which is equally as painful, if not more frustating.
However, hypermobility doesn’t just affect the joints. There are many symptoms and comorbidities that come with hypermobile disorders. There are some lucky individuals that have minor or very few symptoms with HSD. And then there are others like me, who win the “joint lotto” and have a multitude of health problems.
Common symptoms of HSD
The more common symptoms that affect patients with HSD include the following (but not limited to):
Chronic joint pain: and fatigue with early signs of osteoarthritis or osteoporosis and constant state of brain fog (memory loss, poor concentration or sleep)
Trauma: frequent dislocations or subluxations – usually the knees or fingers and toes. Those who experience dislocations in more than one area of the body (fingers, knees, toes, shoulders) may also be diagnosed with hEDS.
Physical markers: other musculoskeletal disorders can also be an indicator of hypermobile joints. These include flat feet, misaligned bones, mild scoliosis, and reduced bone mass that can result in compression fractures.
Common symptoms of hEDS
(Ehlers Danlos Syndrome)
The following is a list of symptoms that I’ve gathered from online support groups. It came as quite a shock as I suffer from quite a few of these issues myself. This list has been gathered from chatting with other hEDS patients and months of my own research.
Stretchy or elastic skin that is slow to heal from cuts and bruises or skin that is prone to bruising without trauma.
Velvety skin or translucent skin where veins are more visible.
Small or non-existent earlobes that often result in chronic ear infections or popping and clicking of the ears
Vitamin deficiencies or the body is unable to process vitamins naturally. More commonly iron (anemia), vitamin c and vitamin D3.
Prone to bleeding conditions or after surgical procedures.
POTS – a condition that causes lightheadedness when standing up or lying down, or just moving too quickly.
IBS or chronic GI issues; bladder issues and loss of bladder control
MCAS – mass cell activation that exasperates ear, nose and throat infections or activity. This includes frequent incidents with hives, edema, or low blood pressure. Asthma is not uncommon with hEDS.
Organ prolapse – my uterus collapsed in 2013 and I can’t have children because of it. For others, they might lose a kidney or gallbladder – also true for me. I lost my gallbladder in 2000.
Mental health and neuro: Anxiety and depression, chronic migraines and headaches
What causes hypermobility?
Joint hypermobility is often heredity and can run in the family. In my case, there is a family history of protein disorders and musculoskeletal disorders like scoliosis. But for me, I’m the only one who has hypermobile joints. So, what causes it?
Collagen is a protein that is found all over the body in skin and ligaments. These ligaments help to protect your joints from serious injuries or trauma. People with hypermobile joints tend to have weaker collagen or another more serious connective tissue disorder.
If the collagen is weaker than it should be, this can present problems later in life with dislocations and subluxations. Popping or clicking of joints are also common issues that result in chronic and widespread pain and fatigue.
Living with HSD or hEDS
Unfortunately, there is no cure for hypermobility or hEDS and the prognosis is often poor. There are some people that are lucky and have only a few symptoms or very minor subluxations that don’t cause pain. But for people like me that suffer from full dislocations – this can seriously impact daily life.
Many patients with hypermobility are often misdiagnosed with Fibromyalgia. This was the case for me back in 2012-2013 I was finally referred to a rheumatologist. The guy was nice enough to deal with. He spent some time with me to cover all my issues and even referred me to a pain clinic. I had some help. But the misdiagnosis led to what possibly might be a missed diagnosis of osteoporosis. It wasn’t until I switched family doctors that I finally got a referral to a geneticist.
For me, it’s a bit too late. I’m almost forty-five and have multiple compression fractures throughout my body, evidence of bone degeneration and bone growth on my knee and shoulder. It’s been a hard diagnosis to accept. But it also makes a lot of sense.
Diagnosis and treatment
For others who get a diagnosis early on, the many comorbidities of hEDS and HSD can be managed by seeing the right specialists. What really helps is to gather as much documentation as you can with x-ray results, lab results or chart notes with diagnoses. Other useful information might be family history, and a complete list of your symptoms, no matter how small they might be.
I should have changed doctors when I presented a carefully thought out list to my family doc of more than 15 years and she was insulted. “What am I going to do with this?” I thought that was a normal reaction. Turns out I was wrong – it was unprofessional of her. She also got mad when I did any research on my own. I should have sought out a second opinion long ago.
Rheumatology (pain and joints issues)
Neurology (migraines, headaches, neuro issues)
Orthopedist (feet issues)
Physio therapy or occupational therapist
Family doctor (for referrals, medications,etc)
For treatment, that will depend on the severity of symptoms. For me, I’m in constant pain. There are varying levels of pain that change from day to day. A compression fracture in my spine has resulted in wedging (arthritis). I also have bone degeneration in my left shoulder and bone spurs in my right knee. I only just learned of this in September 2021.
This past weekend, I also wiped out on a patch of ice and fully dislocated my left knee. It wasn’t my first bad fall and it won’t be my last.
The point is, the earlier you get a diagnosis, the more chances you might have of a healthier life. A healthy diet. Healthy weight loss. Regular and low impact exercise like swimming, or resistance training can help to keep joints healthy.
Seeing the right doctor who takes the time to listen to you and is willing to make referrals is also key.
If your doctor dismisses your concerns and tells you it’s all in your head or to lose weight like my doctor did for many years — it’s time to see a new doctor.
Throughout my research, I was able to find a plethora of resources and supports. This research has helped to learn about my disability and how I can work on getting as healthy as I can.
If you are in the process of getting a diagnosis and need assistance, please feel free to reach out to me in the comments. I’m more than happy to offer advice. It can be a frustrating process – I know. But you are not alone. That’s what this blog is for. To share my experiences and to inform. And also to bring awareness to rarer diseases that many people don’t know about!
If you’d like to learn more about the comorbidities of hEDS, then please feel free to check out my Living Well series. It’s definitely not a new idea – I’m just sharing my own personal experiences to help others like me.
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