Everybody has a limit. I found mine in winter of 2022/2023.
October 8th was the day my numbness began. It began in my fingertips and toes. Over the next few weeks it spread upwards until it was in my legs and torso. It was at this time I contacted my Remicade nurse who advised me to either see my doctor ASAP or go the emergency room. Luckily I was able to get in to see one of my doctors that afternoon. I was examined and told what I was experiencing was called "neuropathy". Because my reflexes were working normally, and I had no loss of function they were not worried about anything serious (such as Guillain-Barré syndrome). None the less, a referral was sent to a neurologist.
Tom Petty was right, the waiting, while not knowing what was happening in my body was hard. No, excruciating.
From the knees down I didn't have very much sensation. You know when a limb falls asleep and until it wakes up it doesn't feel like yours? That was basically my experience, all of the time. Above my knees was also affected, but not as severely. I also had changes in sensation inside my pelvis and subtle changes in my bladder functioning. The scariest symptom (other than my numb feet) was an intense pins and needles sensation in my back and torso anytime I flexed my neck forward.
Despite what I was told, there wasn't anything about my symptoms that did not feel serious.
At some point in November or December I came to the realization that my toenails had stopped growing and had changed in colour. My toenails would become a metaphor for this period of my life. Stagnant and void of life.
Losing the feeling in my feet destroyed me. I had just stepped off of the10-month roller coaster of medications (see Chapter 2: Roller Coaster of Side Effects) and diet protocols (see Chapter 1: Healing My Relationship With Food) and was a mere 21 days into UC remission.
One thing I have known for my entire life is that I have great balance. I taught literal classes on balance. Maybe it was because I grew up on skis, but balance always came naturally to me. Then in an instant I was no longer able to turn around in the shower without holding onto the walls. Have you ever noticed how much you close your eyes in the shower? I never considered it until I could no longer feel where my feet were on the floor. Running became unenjoyable. Not only did it worsen my symptoms, I no longer trusted myself to be able to react effectively to the changes in the ground.
When you have built an identity over a lifetime that includes excelling at activities that require balance, what do you do when it suddenly goes away?
There was not a time in my waking life where I wasn't aware of the feeling (or lack of feeling) below my knees. I've built a career around body awareness, and I wasn't able to turn my own body awareness off or get any space from it. When a limb falls asleep, can you think of anything else until things return to normal? That was my new experience only it never returned to normal. I was tormented by it. I eventually had to put an end to part of my business because I was unable to be present enough to teach group classes - most of which were themed around balance and mobility and done barefoot.
The one time I could almost get space from it was when I was working 1 on 1 with a client, wearing toe socks and calf sleeves. Regular socks just didn't cut it for me anymore. When you are numb, it is the most evident when the numb parts touch other numb or normal parts of you. My strategy for this was to cover all of the numb parts so they wouldn't touch any other parts of me - it was the only time I could almost trick myself into pretending things were normal. This included during sleep, as the feeling of the sheets on my legs and feet was too much and would keep me in a heightened state of awareness.
I waited 4 months to see a neurologist. During this time I went down many neuropathy rabbit holes and even joined some support groups. Essentially neuropathy is nerve damage. It mostly impacts diabetics and alcoholics, but I read that it can be caused by certain medications. The main lifestyle suggestions are: keeping an active lifestyle, eating a healthy diet, and cutting back on sugar and alcohol. This was pretty frustrating to read as I had walked that walk for a decade. Regardless I doubled down on my diet yet again (since Remicade had briefly allowed me to expand it in the 3 weeks since it started working).
As days turned to weeks and then months I slowly lost hope that I would ever feel things normally again. We were also heading into Canadian winter. Like many, I find myself getting low in the darker months (tale as old as time right?).
On the way home from my 4th Remicade infusion on December 15th I noticed the numbness worsening in my hands. It would stay like that for months.
At the end of January I had an appointment with a neurologist who did an EMG (nerve conduction study). They tested the functioning of the nerves in my arms and legs. The test came back normal, meaning what I was experiencing was not neuropathy. The next step would be an MRI of my brain and spine out of an abundance of caution because there was a very unlikely chance that I could have lesions in my white matter. When I asked if Remicade could have been the cause he said absolutely not and dismissed the idea quickly and completely. He said it was much more likely to be autoimmune related or a result of my UC. I left, with no answers, to wait some more.
I had seen multiple doctors by this point who had all dismissed the idea of this being a medication side effect. Nobody seemed to care that it began within 4 weeks of starting Remicade and that after my December infusion it worsened in my hands. I even had one doctor tell me "the most likely cause is anxiety". I was continually told they didn't believe this was anything serious.
None of that resonated with me. It felt serious from the moment the numbness started. I had been living in constant emotional turmoil for months, and constant fear of it getting worse. At that time in my journey I am very sad to say I felt completely unsupported and unheard by almost every person on my medical team. It left me feeling crazy, like I was over reacting, and in a large way it silenced me.
I know you are supposed to talk about hard things, but at my lowest point, the thought of sharing my experience with anybody else who might downplay or shrug it off would have completely broken me.
So instead, I kept it mostly to myself, and put on a happy exterior. I have been through a few periods of depression in my lifetime and I am now recognizing that a trend towards isolation is a sure sign for me. I think that it's ok to do what you have to do to protect yourself during these times, just as long as you keep at least someone you trust in your inner circle. There were a few people in my life that I trusted with the full extent of what I was going through. I made them my advocates - they attended appointments, acted as my ears, and spoke when I was too emotional to speak. I am grateful.
One of the best decisions I made was to find the right mental health therapist. I went through one wrong one before finding the right one and we started the work of processing my grief. Both the loss of the feeling in my limbs, and the loss of my health over the 8 months leading up to it.
Determined not to give up, I joined a local gym. Even if I couldn't feel my feet, I could keep my feet and legs strong and make sure I didn't lose any range of motion (with the numbness came a new tightness in my feet that I hadn't experienced in the past). My routine was to attend the gym right after dark, which was at about 4pm because it was winter in Canada. I spent many Sunday evenings alone at Towne Fitness, doing everything I could to stay strong, physically and emotionally - through many, many, many tears. Have you ever cried it out during a workout? It's something I'm pretty familiar with and I highly recommend it actually. There is a chalk board in the women's change room - I looked at this message every time I was there. This chalkboard was just one of the reasons I knew I had joined the right gym. While I cried, and lifted, I listened to one song more than all the others. I'm sharing it because I hope that it will help someone else with their own struggles.
You're broken down and tired
Of living life on a merry go round
And you can't find the fighter
But I see it in you so we gonna walk it out
And move mountains
We gonna walk it out
And move mountains
And I'll rise up
I'll rise like the day
I'll rise up
I'll rise unafraid
I'll rise up
And I'll do it a thousand times again
And I'll rise up
High like the waves
I'll rise up
In spite of the ache
I'll rise up
And I'll do it a thousand times again
For you
When the silence isn't quiet
And it feels like it's getting hard to breathe
And I know you feel like dying
But I promise we'll take the world to its feet
And move mountains
Bring it to its feet
And move mountains
And I'll rise up
I'll rise like the day
I'll rise up
I'll rise unafraid
I'll rise up
And I'll do it a thousand times again
For you
All we need, all we need is hope
And for that we have each other
And we'll rise up
High like the waves
We'll rise up
In spite of the ache
We'll rise up
And we'll do it a thousand times again
At some point (I think in January) I made the decision to lean on anti-depressants. This would be the second time in my life that I would make this important decision. My own resources had become completely tapped out. I was fighting so hard. I was exercising, attempting to eat the perfect diet, practicing mindfulness, colouring, working with a therapist, and still I found myself in sobbing tears, sometimes daily. My GP put it in a way to me that made perfect sense... I had all of the right coping strategies in place, but my bucket was still overflowing. So, we just needed to increase the size of my bucket for a little while. I am so glad I did. That one decision gave me just a little bit more space to breathe and took a little bit of the weight off of me. It didn't take away my anxieties and woes, it just allowed me to keep them at a safer distance.
It seems a little silly in hindsight, but it wasn't until I read the book Bravey (a Christmas gift from Jason - highly recommend) that I clued into the fact that what I had been experiencing was a depressive episode (even though I was now taking anti-depressants and that they were helping). When I shared my revelation with him his response was, "yeah I know, why do you think I gave you that book?".
I don't know if this is how others experience depression, but for me, when I am "in it", it becomes hard to remember there is a better way of feeling. It just becomes what is. For me, this has been one of the tricky things about depression. It can come on slowly, and your body and mind just calibrate to a new normal. Once it's taken hold of you, it might take someone reminding you that your usual baseline doesn't include crying every day to remember there is another way of being.
I'm not sure if it was as a result of my massive levels of stress that winter, or if Remicade just stopped working for me, but my UC flared up in January. It was decided that I wouldn't go for my next infusion since it had stopped being effective. The sense of relief I felt took a little bit more of the weight off of me.
I waited until the end of April for the MRI (by this time a total of 7 months without any answers). But in the last few months while I waited, some more things began to look up.
I was pretty sure I was starting to see some improvements in the level of numbness. I had started acupuncture which I felt was helping. I had also been through another round of steroids due to my UC flare and while it didn't help the flare, it seemed to help the numbness. The toenails on my right foot had even started to grow again. I held on to that 1mm of toenail growth with my entire being and it gave me more hope than I had had since October.
The first photo was taken on January 29th, 2023. My nails were not yet growing but I was encouraged to see the colour of my right nail improving (you can see the blank slate that my left nail was at that time).
The second photo was taken 2 months later on March 20th. The photo evidence allowed me to really believe what I thought I was feeling. I was beyond excited to see new growth on my right big toe, and the colour returning to my left toenail. It might sound silly but this objective data was everything to me and proved to me that what I was going through was absolutely real.
To this day, no doctor has been able to offer any explanation for what happened to my toenails. Most of them laugh when I tell them about it and say they've never heard of such a thing.
Needless to say, by the time I was heading into the MRI at the end of April I was pretty encouraged that whatever was happening seemed to be improving and I might be finding my way out of the woods. I arrived at my appointment fairly hopeful that I would be getting great news.
Instead I received yet another shocker.
The lovely nurse practitioner told me as cheerfully as if she was telling me I had won some sort of door prize, that they found areas of demyelination and inflammation in my cervical spine (neck) that indicated Multiple Sclerosis.
I was completely unable to process what she seemed to be telling me. I just stared at Jason for some sort of indication that I was hearing her correctly, and then finally interrupted her spiel about the great medications they have now and how some people have it and you'd never even know and asked her, "I'm sorry, are you telling me I have MS?". She replied, "well, it's not conclusive". She then left to get the neurologist.
He explained that what they actually found is called Transverse Myelitis, and does not yet meet the criteria for MS which would have to be in multiple areas of the brain or spine and would have to have happened during more than one "attack". What had happened starting in October was an "attack". There would be no way of knowing if this would be a single attack or if it would occur again until it either doesn't occur again, or does.
I would now be referred to the MS clinic at St. Michael's where they would be able to help me further.
Luckily that referral only took 6 weeks. I guess we were finally all on the same page that what I was going through was serious.
On June 7, 2023 I headed to Toronto to St. Mike's.
Next up in My Story: Chapter 4: Winning the Lottery of Bullshit & Finding Silver Linings