My Whole Life is Shaky Business

#TriggerWarning - this blog contains sensitive topics that some readers might find upsetting. If you need to speak to someone:

USA - https://suicidepreventionlifeline.org/chat or dial 1-800-273-8255

UK - https://www.samaritans.org/how-we-can-help/contact-samaritan or dial 116 123

For other countries - https://findahelpline.com/i/iasp

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I'm a woman first with MS and a survivor of childhood to adulthood trauma. People are survivors in all kinds of different ways and in ways they may just not want to talk about; the unseen. 

When I was around 16/17 years old my hands started to shake. When I held something like a pencil or even a cup of water that would spill out as I shook.  At 16 it isn't cool because my first thought was, “Yuck! Pop’s hands shake like that too!” What else would I put it up to as I could blame him for my curly hair that I eventually shaved to a Chelsea hairstyle. Teenager-dom isn't easy when you're shaky and trying to be “cool”. 

I had untreated depression with anxiety up to my 20s before my husband and I met and had our first baby when I was 27. I didn't take any medication after his birth until my primary care, Dr. P suggested that I get back on my anti-depressant I had been given before our baby was born. I told him I felt tired a lot and felt useless as an artist even for enjoyment. I had a desk job to help pay the bills instead. I gave up drawing and painting and felt nothing but pain and sadness over it all in a very personal sense. 

Life moved on with shaky hands and now, what felt like ants were crawling over tightly bound legs on fire. I took naps with my feet over the couch trying to gain some type of relief. I had a new habit of walking into things. I would laugh and blame the wall for getting in my way. Laughter is my self defence from the inside out. I put it up to having baby brain, stress with work and home. 

Our family grew by one more 4 years later when I was 31 yrs old. I went back on my anti-depressant immediately after giving birth. After he was born, the usual “routine” began again except falling out of nowhere was new. I didn't laugh about that because it wasn't funny. 

When my vision changed, it was scary. Depression and anxiety came back after a month of black spots in my sight, the feeling I was looking through a screen door watching black and white snow falling to the ground. I couldn't look up anymore without getting dizzy. After 2 months of different doctor visits, not all covered by my medical insurance, lab tests, sight tests, and being told nothing was wrong; I felt I was going crazy. I felt like I was treated as a hypochondriac and then like a state institutional case and not a helpless confused half blind and still undiagnosed patient. 

“It's because you're depressed”, I was told once, and started to cry in the office and left without saying another word. I cried to my husband that I felt marked for life with a diagnosis of anxiety and depression. I went mad as I’d reached my end with it all. I went back to the optometrist and took a field vision test. The result was that something neurological was happening. I took a deep breath and just kept moving forward and called the neurologist to make an appointment. 

I still felt insecure but i didn't give up even when I felt crazy and not heard.

At the visit he ordered up a load of tests. Brain MRI, blood tests, and a spinal tap, after which the diagnoses came and ta-dah! I HAVE MS and NOT Lyme disease! FINALLY! I had proof from the MRI that I had a brain, albeit with lesions. I already know I'm eccentric but felt like carrying the proof of that MRI around to show and yell at everyone “told you I’m not crazy!” 

After the short relief came the chronic depression that couldn't be lifted, even when life and work made me so happy. Months went by, my symptoms kept toying with my emotions and eventually turning my depression to gleefully cynical, angry, sad, and scared. I was angry that altho my vision had gotten better that my body and brain had, in effect, turned on me. 

Waking up was reminder enough and seeing my feet curled as I pushed them into my favorite sneakers before heading to work. I had been given every medicine to see if it would help with my mentality, acupuncture for my legs, and my anti-depressant medication switched to a new one after speaking with my caring and concerned primary doctor. I asked him if my MS was my karma. I went so far as to talk to my priest, Fr Hal, if I could just be mad at G-d. They both helped me greatly in this aspect as I was reaching for anything to make sense of it all. 

The DMT that I had picked at first, was known to cause depression but I made the best of it and tried to move forward. 

Why can't DMTs just cause diarrhoea as a side-effect instead of depression, like any other OTC/regular medication that MSers and non-MSers alike take when needed? I’m not depressed about my MS, although I miss being able to sneak up on our kids for fun as my drop foot makes my feet sound like a creepy zombie walking in the hallway. I’m no longer sad and haven’t been for some time now after 9 yrs post diagnosis. I plainly and simply get depressed at times for no reason with symptoms and all.