This is the interview of Heather M. She shares her journey living with Fibromyalgia, EDS, autism spectrum disorder, delayed gastric emptying, Raynaud’s, GERD, MCAS, and dysautonomia. Please be respectful of Heather and her story as she shares her words.
Learn about Autism spectrum disorder here https://www.nimh.nih.gov/health/topics/autism-spectrum-disorders-asd/index.shtml
Delayed gastric emptying (gastroparesis) information https://www.niddk.nih.gov/health-information/digestive-diseases/gastroparesis
Raynaud’s info can be found here http://www.mayoclinic.org/diseases-conditions/raynauds-disease/basics/definition/con-20022916
What is GERD? Find out here http://www.mayoclinic.org/diseases-conditions/gerd/basics/definition/con-20025201
What is MCAS? Find out here http://ehlers-danlos.com/2014-annual-conference-files/Anne%20Maitland.pdf
Learn about fibromyalgia here http://www.mayoclinic.org/diseases-conditions/fibromyalgia/basics/definition/con-20019243
Learn about EDS here http://ehlers-danlos.com/what-is-eds/
Learn about Dysautonomia here http://www.medicalnewstoday.com/articles/76785.php#Autonomic_dysreflexia
Where are you from tell me a little bit about yourself…
I’m from Victoria BC, and have lived here most of my life. I enjoy creating art when I can, and spending time outdoors when I am feeling up to it.
What is your name, age, and disease/invisible illness/mental health?
Heather M, 30 years old. I am diagnosed with Ehlers Danlos Syndrome, Fibromyalgia, delayed gastric emptying, GERD, Raynaud’s, and Dysautonomia. I also suspect I have MCAD and an Autism Spectrum Disorder.
When did life change for you?
Growing up I was always different from the other kids. Weaker, slower, less co-ordinated. I had a tendency to injure my joints, and I had very little vision in my left eye, which left me without depth perception. I often had pain and stomach aches but I was told those things were normal. I had frequent bouts of bronchitis and sinus infections, but no one thought anything of it. My childhood was almost normal. It certainly seemed normal to me
The first change in my health took place around age 15. My daily pain was increasing, I was fatigued, I had headaches all the time, and muscle spasms in my neck and shoulders. I thought all of this was normal. My mother, from whom I get my genetic illnesses was still undiagnosed with anything at that point, and the fact that she had these symptoms too made me even more certain they were just a part of life. Everyone gets headaches, right?
I was also dealing with social and emotional difficulties. I believe this was a combination of an undiagnosed Autism Spectrum Disorder and the repercussions of trying to keep up with my peers while pushing past severe pain and fatigue on a daily basis. (I was also a survivor of sexual abuse at age 11/12 which probably played its part too)
Life was overwhelming. One day I started to cry and I couldn’t stop. I cried everyday for about 3 weeks. I started skipping class because I couldn’t stop crying and the other students teased me for it. I felt all alone. I reached out for help to my family but they thought it was typical teenage hormones and they figured I would get over it.
Eventually the stress got the better of me and I started pulling my hair out. I was hospitalized in a children’s mental health unit.
The real tragedy here is that part of my illness is a severe sensitivity to medications. Psych meds in particular, cause an adverse reaction in me.
So they treated me as purely a psych case, and I became one. The more they treated me, the worse I got. The medications caused a psychotic episode, among other things. The next 6 years of my life were a blur of medications, hospital safe rooms and suicide attempts. At some point during that time I was diagnosed with Borderline Personality Disorder.
I managed to level out around age 22 after my millionth med change, my “mental illness” improved pretty dramatically (there are a small handful of psych meds I don’t react to).
So there I was, no longer in a state of psychosis from the wrong meds, trying to figure out how to move forward with my life. Things weren’t easy for me, I was still in severe pain, and my daily fatigue was a battle, but by far my biggest barrier at that point was that I believed I was mentally ill. At that time, I didn’t know about my med sensitivities, so the erratic behaviours, the psychotic episodes, the BPD, I believed that was all me. It took some time to get past this.
By this time, I started mentioning my pain and fatigue to my Dr. I was told it was common for mental illnesses to have physical manifestations and it was shrugged off.
Life continued, I went to university, and then got my dream job as a Community Support Worker. My health continued to be a major struggle. I was pushing myself way to hard. My health began a steady decline. I was diagnosed with Fibromyalgia in 2011. My mother had been diagnosed with Fibromyalgia a couple years prior, so even though I didn’t quite fit the diagnostic criteria, a rheumatologist decided that since my mother had it, I probably did too.
As my health declined further, doctors told me it was fibromyalgia and or depression causing my symptoms, but I never felt that fit. I was frequently off work for months at a time. Every time I returned to work, I took a job with fewer hours, and fewer physical demands. I was receiving PWD income at this point, but still determined to work as much as I could.
Throughout all this, I searched for answers, I underwent tests, I googled autoimmune diseases. My GP continued to insist it was all due to Fibromyalgia and depression. Eventually, I decided to accept the diagnosis and stop looking. Then one day I was reading an article about diet and Fibromyalgia, when I came across a brief mention of Ehlers Danlos Syndrome. Which, like most people, I had never heard of.
My life began to make sense. I mentioned EDS to my GP. She discouraged me from seeking diagnosis, saying that even if I did have it, treatment would be symptomatic, same as it is for fibromyalgia. I accepted that for the time being, but I joined an online support group for people with EDS, and I continued to research it. 3 months later I went back to my GP and insisted that I be referred to a geneticist. I explained why diagnosis was important to me and that I needed to be able to make informed decisions about my health. She agreed and the referral was sent. At the time I was told the wait would be about a year, but it actually took two years. By the time the appointment came around I was finished with work entirely. Retired at age 29.
The long awaited appointment was a huge disappointment. The geneticist was not up to date on the current diagnostic criteria. He was dismissive and cruel. He said I probably didn’t have EDS, and even if I did, there was nothing to be done for it. He recommended psychiatric help, and sent me on my way. I was crushed. A few months later, I scraped up the money to travel, and saw a respected geneticist in another province (with extensive experience with EDS) who diagnosed me right away.
Then came the grieving. The Dr in Alberta confirmed my fears that it would be detrimental to my health to have children. He confirmed that my condition is progressive and incurable. He explained that at this stage I was “wired for pain”, and the chances of ever finding effective relief were minuscule. Even though I was relieved to get the diagnosis I had fought so hard for, the grief was overwhelming.
So, to make a very long answer much shorter, the first big change occurred at age 15. Then my 20’s were a series of big changes. Changes in my pain levels, my level of functioning, my relationships, my day to day life, and changes to my hopes and dreams for the future.
What was life like before diagnosis?
Confusing! Life before diagnosis was confusing. I didn’t understand why I couldn’t keep up with my peers.
It was also often very scary, because I didn’t know what I was dealing with. For example, I have bouts of something called costochondritis. Costochondritis is pain caused by inflammation of the tissues between the ribs, and is very common in people with EDS.
Before being diagnosed with EDS, these episodes were much scarier because they feel like a cardiac event. But now, I can recognize and explain these symptoms.
How has your diagnosis changed your life?
I understand myself better. I am less angry with myself than I used to be, at least my body has good excuse for treating me so poorly!
Please describe the best you can a day in the life of you?
I wake up with a bad headache. My body feels stiff and heavy, I can hardly move. I use my hands to get my legs moving in the morning, since they won’t move of their own accord. I haul myself out of bed, after a brief struggle, and head to the kitchen. I take my ice-pack head wrap out of the freezer and put it on. Then I take my meds and supplements. I am exhausted from unrefreshing sleep so I check the coffee pot. If I am lucky there is a little left over from yesterday and I can heat up a cup in the microwave.
I sit or lie down on the sofa for 20 minutes or so, then I get up and make some coffee. While waiting for it to brew I do a little cleaning in the kitchen. I usually get the dishwasher at least half way loaded or unloaded before I have to sit down with my coffee.
Let’s say today is a day where I have an errand or two to do, and I’m feeling up to it. So, I pick out some clothes. I decide whether or not I should wear compression socks. Do I feel like my BP is leaning towards high, or low? If I’m not sure, I check it. Then I rummage through my laundry to find something clean-ish, and comfortable. I set down all my clothes next to me on the sofa, and rest for a few minutes.
Then I get dressed. Once my socks and pants are on, I get up and grab my pain cream. I have a special long handled applicator, to help me put it on. I cover my entire back, neck and shoulders with A535, then I can finish getting dressed.
Next, I assess my needs for splints and tape. Driving always requires wrist supports of some kind, usually my braces. Sometimes I need coflex tape for my thumbs, or KT tape for my elbows or neck. Some days I wear finger splints if I feel like I need them. I can’t drive with a neck brace on but I usually bring it with me if it is a bad neck day.
I don’t usually eat solid food when leaving the house. I can deal with nausea, vomiting, and GI distress at home, but it is a big problem if I am out running errands. But if I don’t eat, I get weak, shaky and dizzy, so I bring some liquid nutrition with me. Usually I make a nutrition shake, and I also grab a can of coconut water (helps keep my blood pressure stable), and my water bottle (I am easily dehydrated).
I fix my hair (I wear it short so this doesn’t expend much energy), and brush my teeth. Then, it’s time for the boots, ugh! I have a love hate relationship with my boots. Lacing them up is the most tiring part of my routine. I have to lace them very tightly, as they help to hold my wobbly ankles in place and prevent injury.
Next, I choose a cane that matches my outfit (I design custom canes, so I always have lots to choose from), and I’m ready to go.
Driving is becoming increasingly challenging, and I suspect there may come a day when I need to give it up. But for now, it is manageable, and it gives me freedom, which is something I don’t have an abundance of in my life, so I love it. My family has gifted me a car, which I am very grateful for.
I can generally manage one or two errands without assistance. I have a parking placard, and I keep a walker in my trunk. Most places I visit have automatic doors, or buttons for the door, which is awesome, as I find heavy doors very challenging. I get worn out easily, so often I will have two errands planned, but have to prioritize, and head home after the first one.
Arriving home is generally the hardest part of an outing, as I am exhausted and my pain is intense. I have to back in to my parking space, which is extremely painful. I have to carry in any items that I purchased. The fire doors in my building seem to weigh a thousand pounds.
Then the boots. I have to undo the laces almost all the way. If I try to get lazy and pull them off while they are too tight, I will injure my ankle.
I would love a cup of tea but I haven’t the energy to make it. I grab an ice pack from the freezer and lie down on the couch. I am hungry but I can’t move.
Netflix and Facebook for the rest of the day. If I find the energy I spend 10 or 15 minutes cleaning in the kitchen, or change the cat litter. At some point I manage to fix a simple meal or snack, or sometimes resort to ordering in.
Sometimes I take a bath, which helps with pain relief or Dysautonomia symptoms. But I often choose not to risk it if my partner is at work. Getting out of the tub by myself can be challenging and dangerous.
Sometimes I do crafts, or draw, or I work on my canes.
Overall, I would say my life is 75% Netflix and Facebook. It’s not so bad though. Netflix allows me to imagine other lives, and Facebook allows me to have social relationships with others who are like me. What a glorious age we live in! 😛
What was/is the most challenging thing you have faced because of your diagnosis?
Probably the astounding lack of treatment. I manage my care, I do research, I advocate for myself. I have to do these things.
Even when I tell the medical system what I need, they are unable or unwilling to provide it. It is often spun back on me. They don’t know how to help so they dispute the diagnosis, or they discourage me from learning more about my condition. It is so frustrating!
Do you find that you can keep up with others?
What would you tell others living with your diagnosis?
That we need a revolution. Don’t let the system make you feel small. We all have value.
What would you like to tell others that don’t live with a similar diagnosis?
Please try to be understanding. You have no idea how hard it is to live this way.
What have you learnt on your journey?
To be grateful. I know that sounds bizarre. When you have a progressive illness, you have to be grateful and appreciate where you are at today. Because 10 years from now, when things are much worse, you will miss this time.
I thank you heather for sharing your journey with me and the world. Wishing you all the best now and always.