When I was getting my dragon tattoo last week, I was asked about what is was like to have fibromyalgia. I stumbled so badly when I was trying to remember what it was like before my mental health diagnosis, when I just had fibromyalgia. I feel like my pain has been different for over a year, when I had my first mental breakdown of 2022. It happened as my last semester of college was wrapping up and my placement was about to begin. I haven't felt a moment of relief in my lower back (kidney area) since my c-PTSD/flashbacks became intense and much more frequent. I feel that my hypervirulence is heightened and my body tries to calm itself with bouncing and rocking, and I try to calm myself, then my nerves tighten and twitch painfully.
Actually, I can't remember a time when I felt okay.
The first time I heard of Fibromyalgia was in November 2017. I was feeling very rundown. I was staying in Toronto for work and I was sleepless and restless. I had terrible pains in my sides, and lower back - now I know it's kidney pain - but every time I would go to the hospital, the pain would diminish and I would be sent off without answers. I would usually feel like I was being judged, cause my pain was only known to me. I web'md'ed my symptoms and Fibromyalgia was one of the conditions.
It wasn't until November the following year, that I asked my doctor after over a year of appointments, bloodwork tests, x-rays, ultrasounds, CT-scans, two specialists, and one MRI, if this could be Fibromyalgia. It was still foreign for me and I wasn't even pronouncing the word properly yet.
These major symptoms that started to affect my ability to hive a good quality of life.
widespread pain
phantom pain
fatigue
depression
anxiety
cognitive
headaches
migraines
trouble(s) sleeping
chronic sleep deprivation
I remember having absolutely no energy, I would stay in bed while the children went to school and by mid to late afternoon I could muster up enough energy to get them to their sports or activities in the evenings.
One thing about having Fibromyalgia is how often people dismiss your illness. It is an invisible illness and most times when going through medical tests, it shows as normal activity on the charts and (some) doctors tell you that it's nothing. It's sometimes cruel because I am in pain and the medical professional just told me that "it's in your head", "not that bad", "it can't be that bad", "not real". The doctor I was seeing during the beginning of my mental breakdown, in March 2022, was a wonderful woman. During our appointment, she listened to me and she validated my condition & my pain. I cried tears of joy because the physician before her was the cruel one. He dismissed me and I was told my pain was not real. I went to him for help because I was having mobility issues and had fallen down three times, he made me walk back and fort in his office and said I couldn't just fall, it wasn't possible. I was scared to fall down the stairs at the college when two of my falls were at home on my staircases (the third fall was at a girl guide event after 20, 000 steps kind of day). I tried to explain that my body felt exhausted and my legs let go. He didn't believe me and I never got the care I deserved from his practice. I saw him once in the six month he was assigned as our family physician, he closed his practice in the spring of 2020.
I believe his practice got good kick backs for the amount of people they had on heart monitors. I was asked to wear this twice, and I was never given my test results because the doctor's practice closed, the company will not release my records without a physician's office to forward it too. It was very painful to wear for two separate lengthy periods, the adhesive was ripping my skin and I was bleeding daily.
I've been pill shamed and gaslighted by physicians and other health care professionals. When I have asked for help, I have been overlooked, I have been told (or noted in my medical records) that I am difficult. The mix messages and lack of support when you're taking prescriptions that need monitoring... or renewals. That shame too. I was made to feel like I was a junkie on the meds that were designed to help me. Or the times when I needed to come off the medicine before the prescription ran out, and no medical clinic would see me because of the name of the medicine. They wouldn't listen that I want to stop taking it, not look for a renewal. I had to learn to ease myself of medicines without proper knowledge. The last time I experienced this shaming, after reaching out to a dozen medical clinics including my college campus clinic, and had to come off the meds 8 days before the campus doctor would be on site again. I was also exposed to situations that retriggered traumas with Cody and then with my LM household. While trying to complete my first college diploma!
In the spring of 2022, I was diagnosed with Complex PTSD. I am 43 years old and learning to heal my inner child. I'm navigating my mental health struggles with support from my inner circle. Learning and growing everyday.
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