Bad news is that I’m still coughing and still have a leaky nose. My voice is still off and I can barely hit medium notes. On top of that I’m still not at full energy, I’m having trouble standing/walking for more then a half hour without feeling faint. I’m still very dizzy but that is a side effect of the pills they gave me for my heart.
Good news is that I’ve got more energy then I did, I don’t need naps anymore. I am able and okay with writing. I can think clearly most of the time and I should be fine to work from home next week.
Unrelated to the RSV, I still have numbness in my face and pressure in my left temple. My wrists and arms are not bad, which is nice.
I have an appointment with the MS clinic next week, an internal specialist in 2 weeks, and the heart institute in March. Hopefully one of them will help with the long term stuff and hopefully the RSV leftover symtoms will go away.
Thanks for following and hope you have a healthy new year.
Since my last update I’ve started physio, exercises, and occupational therapy. It’s only been a week, but it feels like a lot of effort for little gain. I’m going to continue because at least it’s completely covered by WSIB. The people are nice but everything feels fast.
I saw a pain doctor. He was rushed and said I should continue what I’m doing and gave me some exercises that are the same as the kinesiologist has been doing. I’m glad he didn’t give me any pills. I’m already dealing with a lot of mind fog, I don’t want to deal with any more.
I had called my doctor to try and talk to him about MS and I managed to get an appointment. He said I had a lot of the symptoms but that the neurologist should have caught it. (Same guy who told me I was too young and should just ignore it.) However since I have the symptoms he has referred me to get an MRI. It’ll image my brain, neck, and back to make sure. This should help diagnose MS or any form of cancer.
My father died of brain cancer and my grandmother of leukemia, so I’m trying not to panic at the idea.
Reality Sucks, or Yes, I am disabled
I’m starting to come to the realization that I’m disabled.
My energy levels, lung capacity, and overall strength have never fully recovered from covid in February 2020. I’m told it’ll get better, but it’s a slow process.
Add to that the dizziness and fatigue I’ve been feeling since last year and it means I’m not in good shape or feeling well. In short, I’m disabled.
It’s frustrating me because I am physically able to do almost anything I need to but I start getting tired and pained quickly. If I push myself too far, I start to get dizzy and clumsy. Just setting up my backyard, with lots of help from the kids, left me feeling horrible for two days after. Headache, inability to think, pain everywhere, short of breath, fatigue, and extra pain in my arms.
I’ve been experiencing something similar with picketing but that’s a different post.
Accepting that I’m disabled means I need to start finding my limits and living inside them. Once I know what’s wrong, I can hopefully work up to increasing activity. For now, I’ll have to be extra careful with gardening.
So that’s my update, it’s all over the place but I’m okay and things are moving. Let’s hope it’s in the right direction.
As I mentioned in March, I did the nerve conduction test with a very condescending neurologist.
Yesterday I had an appointment at the speciality clinic. My very nice occupational therapist (OT) went through a bunch of questions and asked me about a bunch of things. She then did some physical tests and went off to talk to the doctor.
I told her I was worried about the vision problems and the numbness in my face and my worries about MS. She said she’d talk to the doctor. She also said that that was normally something a family doctor dealt with and not them. They are concentrating on the neurologist’s conclusion that it’s muscular.
The doctor came in and asked me more questions and then asked, “What is bothering you more.” I told him it was the pain that bothered me more, but the face that scared me more. His reply was, “Okay then. Let’s focus on the pain.”
So the plan now is to have me see a doctor that specializes in pain and put me with a group consisting of a physiotherapist, a therapist, and my OT. They’ll run special rehab and physio for me two or three times a week. I’m kinda happy about that, since it’ll save us some money on physio that is only covered 80% usually.
I’ll be honest, I’m a little underwhelmed. It’s been 10 months of this and I haven’t had an x-ray or any other tests on the part of my arms that hurt. I’ve had one type of test, no imaging, and this feels very flimsy as a diagnosis. (Is it wrong that I want something definitive?)
The clinic people are really nice and I think they have my best interests at heart, but I feel like they’re focussed on getting me back to work and not really figuring out what’s wrong with me.
I asked again about MS and the OT said that if there had been any signs, the neurologist would have noticed and that the doctor is trusting that. It’s not very comforting, but I’ll have to trust them for now.
I doubt the balance issues, clumsiness, brain fog, trouble sleeping, numbness in my face, and vision issues are due to muscular issues in my arms. I’ll do what they say (I don’t have much choice) and hope it helps, but I’m not convinced. If this doesn’t help, I’ll have to try and see if my family doctor is willing to run a parallel investigation (if he hasn’t fully retired by then).
It’s been a hard week. Glad it’s over and now I can enjoy spending time with my family over the long weekend.
I’m enjoying some cuddles from Pegasus. You can enjoy this fantastic post by Jamieson Wolf.
Words have the power to heal. I experienced this firsthand.
In 2013, I woke one morning with little motor control
and could barely walk. I went to the doctor and was diagnosed with
Labyrinthitis. I wasn’t allowed to read or watch television or write at my
computer for two weeks. Thankfully, my mother suggested I listen to audiobooks.
I downloaded the first two Harry Potter books and started listening to them,
certain I wouldn’t like them. Thankfully, I fell in love.
Listening to Harry Potter brought the story and the
world that Harry lives in alive for me in a way that reading the book couldn’t.
Hearing Jim Dale read out Harry Potter and the Philosophers Stone and then
Stephen Fry read Harry Potter and the Chamber of Secrets was also a balm to my
soul. Over the two weeks that I had to take off work, I would sit back and
close my eyes and let the words wash over me. I would let the world of Harry
Potter fill in the darkness.
Then other problems began. I didn’t get better. I got
worse. The left side of my body went numb; I fell almost daily. Eventually,
after losing the ability to speak and type on a keyboard (having been able to
type since I was in my teens), I knew that something was very wrong. There was
something else wrong with my body and, after a day in emergency, the doctors
had an idea of what it was that lived within me.
There was a neurologist on staff that night. After
looking me over he informed me that it was probably multiple sclerosis, but
they would have to run tests to make sure. It would be some time until I knew
what was wrong.
I turned to books for comfort. As I didn’t have
Labyrinthitis, the doctors said it was okay for me to read again, thank
goodness. I picked up a book by a new author that one of my friends recommended
to me: Cupcakes at Carrington’s by Alexandra Brown. It was about a woman named
Georgie Hart who was desperate to put her life back in order. In a bizarre
coincidence, she had lost her mother when she succumbed to her multiple
sclerosis. This touched me deeply and I felt deeply connected to the book
because of that. I went on to read Cupcakes at Carrington’s three more times
and it was magical every single time.
I went through a battery of different tests: vision
and hearing, bloodwork, a CAT scan and an MRI and a spinal tap to finish it all
off. Now all I could do was wait. While I waited for the diagnosis, I knew that
I needed to write something, anything. I would lie in bed at night and watch
the stories I wanted to tell float above my head. Before, I could write ten
thousand words in a weekend without breaking a sweat. Now, I could only write
five or so words at a time, forcing my fingers to hit the right keys.
I decided that I had to write. I had to write something.
I had dabbled in poetry in my teens before turning to short stories, novellas
and novels. I figured that writing poetry would give me another way to tell
stories. My poems would do away with iambic petametre and a rhyming scheme.
Instead, they would be raw and real, part memoir and part story. I would take
those five words that I wrote a day and stitch the poem together when I thought
it was done.
Each poem took me about a week or more to write, but
as I continued, I noticed something: I was getting better. Five words a day
slowly climbed to ten and then to fifteen. I remember hitting twenty words a
day and I felt elated. It was as if I had climbed a flat mountain and could
look back at all of the words I had written. It was as if I could fly. Soon, I
had a small collection of poems. I even thought that I might one day collect
them all together and publish them. I had an idea for a title: Talking to the
Sky. It would be a reference to when I was trying to heal and would sit at the
computer, staring at the blank screen unable to type and tell the stories that
I wanted to. It was like I was talking to the clouds.
Then, after three months, I received my diagnosis, a
day before my birthday: I had relapse and remitting multiple sclerosis. I
wasn’t afraid. Now, I knew the monster within me had a name.
I retreated into the world of Harry Potter once again.
I have read the Harry Potter series more than anything else. I read the series
once a year and have stopped counting the fortieth time I read the series the
entire way through. That was years ago. I turned to his story when I needed
comfort, when I needed joy. When I was sad or depressed, the story held within
the books was pure magic. I needed Harry and company at that moment more than
anything.
I also needed to write more than poetry. I needed to
break out of the constraint of sewing words together like a patchwork quilt. I
needed to write a novel. I didn’t know how long it would take, or if it would
be any good. It didn’t matter; I was angry, surprisingly so, and I wanted to
write something that would help soothe the anger. I wanted to give the anger a
focus.
With that in mind, I started writing a novel I called
The Other Side of Oz. In the novel, Justin is an Oz fanatic who has started
seeing yellow bricks everywhere he goes. Is it his imagination intruding into
real life? Then Justin and the boy he likes are in an accident. They travel to
Justin’s version of Oz, but again, is it real or is it their imagination? I
wanted to find some way to convey the sense of the unreal that I lived with
every day. While not about Harry Potter, it was about the other series of books
that had formed a large part of my childhood and adulthood. I wanted to write
about someplace magical that wasn’t the world I lived in.
By the time I was done the book, a few months had passed.
It had been exhausting, trying to force my brain to think of a story and
forcing my fingers to type the words out. However, when I typed The End, I was
elated once more. I had climbed another flat mountain, this one higher than the
others that I had climbed.
I noticed other things, too. I was lighter, as if a
weight had been taken from me. Scrolling through the pages of the novel that I
had typed out, I knew it was because I had put the weight of that anger and
uncertainty into The Other Side of Oz. That novel has never seen the light of
day; perhaps, with a hefty edit, it will someday soon.
What I’ve come to realize six years later, is that I
would have been a lot worse without the magic of words. The books I love kept
me sustained and comforted when I need it and, when that wasn’t enough, my own
words had flown out of me to relieve me of the pain and angst I was carrying
within me. Words were the magic that I wielded. As much as the multiple
sclerosis took a lot of things from me and made me revaluate how I lived my
life, the one thing that didn’t leave me was the magic of words. Each one I
write is part of the spell that I weave and each one I read heals me still.
I would be lost without them.
Jamieson Wolf is a number one best selling author (he likes to tell people that a lot!). His recent works include the memoir Little Yellow Magnet and the novels Lust and Lemonade and Life and Lemonade. A third novel, Love and Lemonade, comes out later this year. You can learn more about Jamieson at http://www.jamiesonwolf.com
