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Tanya Fischer

Participating in my 1st MS Read-a-Thon

Reading Goals

  • Cross off a book that’s been on my to be read list for years

My Reading Progress

Books Read

10

Goal: 10
Pages Read

3,205

Bookshelf

Reverberations

I expected the last blog post to be the final one. But then I ended up in hospital.

It started as discomfort in the morning, but not enough to phone in sick. By the end of second period, I was in significant pain. For the first time in nearly twenty years, I left work early to go home, sick.

After a couple of hours of trying to medicate, sleep through, manage the pain, I phone the on-call nurse through Health Direct to help me decide what to do, whether I’m over-reacting. After the first initial details, I’m asked if I have any medical conditions.

Relapsing-remitting multiple sclerosis.

And thus begins the process that will be repeated with the nurses at the local multipurpose health centre, the paramedics, the doctors at the base hospital. A listing of symptoms from my past relapse (surprisingly difficult), a detailing of my medication and treatment, an explanation that it’s been twelve years since my last relapse. Time and again, I explain that this is not that. While MS symptoms can vary, my last MRI showed no new lesions, my recent neurologist appointment indicated nothing of concern. I am pretty sure this is not that.

To their credit, every medical professional I speak to takes me at my word. Neither my expertise about my body, nor the pain I’m experiencing, are dismissed or trivialised. But for the first time I realise that with every future medical issue or emergency, MS has the potential to distract or disguise what might be happening.

For both my partner and I, the experience in the hospital evoked echoes of that time more than a decade ago. The stricken expression on his face, not knowing what was happening as I vomit from the pain. His apprehension as they struggle to cannulate me so that they can administer pain relief, remembering the last time when, not capable of understanding what was happening and just wanting to go home, I kept ripping the needles out of my veins. My own anxiety, trusting that I am cognisant and capable of answering the questions myself, not looking to him to speak on my behalf, as I did when I was unable to communicate. At the same time, I recognise that to some extent my capacity has changed, and that all important things must be written down. While I’m better than I was, my memory is still affected, and stress makes it infinitely worse.

The diagnosis, when it comes, is somewhat anticlimactic: a kidney stone.

This was not that.

This time.

Sunflowers

A friend of mine loved sunflowers, not only for their bold, bright yellow blooms, but for their symbolism (yes, she was an English teacher, too). They turn their faces to follow the sun. The sunflower can be used as food, as anti-inflammatory medicine, and as a hyperaccumulator, capable of removing radiation from contaminated soil. It’s become a flower that I’ve come to appreciate deeply.

I think I’m naturally optimistic by nature (that idealism is probably the reason I’ve survived teaching...so far). Multiple Sclerosis has brought its own challenges, but it’s also had its rewards.

I was, in many respects, lucky in my symptoms; I don’t remember any pain. In fact, I don’t remember the worst of it. And something you might not expect - sometimes the symptoms were fun! I remember bending down in the kitchen and experiencing a little buzzing sensation at the base of my spine. Like electricity. A sparkle. It was intriguing and quite nice. I kept finding excuses to bend, just to make it happen again. The brain stuff was less fun, but because I could only focus on one thing at a time, watching the movie Gravity was one of the most immersive experiences of my life. I’m pretty sure it must be what good drugs are like. 

In fact, I was lucky in many ways. I was lucky it was the relapsing-remitting kind. Lucky my GP had MS as a possibility foremost in her mind. Lucky I live somewhere with incredible medical services nearby (and various capital cities within less than a day's drive). And very fortunate that the people around me are intelligent and compassionate and I haven't ever experienced the stigma that can accompany such diagnosis. 

I think it has made me a better person, a better teacher. Re-learning to read as an adult, I have a greater understanding of how frustrating and overwhelming it is to struggle with words. I hope it has made me more compassionate and patient as a teacher (even if my Facebook posts don’t always read that way).

I know I’m gentler on myself. Without MS, I’d still be working five days a week, because that’s the expectation of our society. I’m less inclined to castigate myself for my failures (although my hands are still often reprimanded for their ineptness); on any given day, something – some exercise, some housework, some schoolwork – is better than nothing.

I might not trust my body, but I do trust the people in my life. 

At my worst, the best memories involve friends. I couldn’t read, I couldn’t remember movies, I couldn’t do anything meaningful. A friend came to visit, made me a cuppa, chatted, gave me a jigsaw puzzle. The jigsaw puzzle was achievable; it gave me purpose. I could work on it on my own or with someone. I love that it’s still a passion today, both in my personal and professional lives.

And I’ve changed. I think I like who I am. Who I've become. Whenever possible, I choose to face the sun.

Counting Spoons

I still experience flares today. One day I can walk the bin to the road like anyone else my age, other days I'm puffing and pausing and taking small, careful steps, the concentration needed to walk and manage the wheelie bin surprisingly demanding. Stairs can be a particular challenge, often needing one hand hovering over the rails, for reassurance, if nothing else. One day I can get up and do some pruning, assemble some flatpack furniture, clean the kitchen and still have energy to walk to dog. The next, it feels as though I have weights around my wrists and ankles and hips and shoulders, every movement I feel the effort and heaviness of my body, physical tasks take so much longer and are done half as well. Those days I try to push through, getting more and more frustrated, thinking that I just need to make an effort, until someone reminds me it's OK to listen to my body and rest. Or I push through and pay for it the next day and the next and the next. My body struggles to regulate temperature. Every so often, I wake in the middle of the night, completely slick with sweat. Hot weather exacerbates the fatigue. Sometimes I don’t know if I should worry, if it’s actually MS. Is that persistent muscle spasm in my left eyelid for months normal? Is a week of my right arm ‘falling asleep’ at night a potential symptom? Are elevated lymphocytes in a routine blood test something more than a side-effect of medication?  More often than I’d like, my brain doesn't work - I lose words, I lose the thread of conversations, a single, inconsequential decision is simply too hard.

I don’t always know when to expect a flare. I’ve never been good at reading my own warning signs, identifying patterns in my physiology. I don’t know what precipitates a flare…if anything does. But I’m learning.

Most mornings, while I wait for the kettle to boil for my cuppa, I try the Japanese callisthenics, the ‘Radio Taiso’ exercises. Most mornings, it’s an easy, three-minute routine that I know by heart, usually completing the moves while I’m thinking about the day ahead. But some days, I can’t keep my balance, or I can’t lift my arms above my shoulders, or I need to sit down straight after to recover. It’s a good test of my awareness of my body in space (proprioception) at any given moment; the bruises on my body (and my dog’s tendency to hide when she hears the music that accompanies my exercises) are evidence of its malfunctioning.

I know that using up too many spoons can be exhilarating at the time, but later, there’s a cost. I’ve made lifestyle changes to try limiting the cost to my body. I stopped wearing heels, because the subconscious effort of picking up my left foot had a domino effect on my hips and back and shoulder. Weirdly, I now know dresses take more effort to wear than pants – something that I’d never have noticed without MS. A skirt requires constant monitoring when walking along balconies and up or down stairs, management in windy weather, continual monitoring when moving and sitting. It was another task my brain was needing to manage all the time, while simultaneously doing everything else. I work four days a week, hoping that I can balance work and rest. And I’m still trying to understand that sometimes it’s necessary to say no to the fun things. That’s a me-thing. My friends are entirely accommodating when I have to skip their birthday lunch because I’m exhausted and can’t manage the cognitive demands of socialising with people, let alone the physical demands of sitting at a restaurant for a few hours. I’m still wrestling with missing out on nice things or important moments (especially when I prioritise stupid work-stuff). I’m learning to let go, knowing that I can’t do everything.

I had a conversation with my 90-year-old grandmother one day. She was lamenting (complaining) that she couldn’t do all the things she used to be able to do effortlessly. That getting older was a series of frustrations when her body just wouldn’t cooperate and she wasn’t physically capable and she was tired. All. The. Time.

I learned all this myself the hard way, eight months before my 30th birthday.

But this makes the good days so much sweeter, knowing that I can trust acceptance and patience from the people around me when I’m at my best AND my worst. A friend gently asking if I’m due for medication because of my irritability and the polite “oh” when I sheepishly admit I’d had it only a few days ago (to be fair, there is a forty-eight-hour buffering effect... like dial up). Some days, it’s someone laughing along with me at my own expense (I can be quite ridiculous). When pre-medication clumsiness causes me to throw a French martini (with the last of my vodka) across the kitchen floor - what else can you do but laugh? And when conserving spoons means permission to have a nana nap, sandwiched between my four-legged buddies, I think I’m more than Ok with it. 

Who am I?

I don’t have many proper memories from when I was sick, but it was a very different experience for those closest to me. While I was in hospital, circling items from every section of the menu because I thought you needed to tick something in each box (ending up with some bizarre food combinations), someone else was finishing work, driving into town to spend the evening with me till I fell asleep, driving an hour home in the morning to take care of pets and the house, getting ready to do another day at work.

Something that’s worth knowing, to understand my experiences, especially if you didn’t know me at the time: I have a tendency to select my favourite stories - the funny or ridiculous moments - to avoid the more serious or scary (or embarrassing) times. I think, too, that some things are too private for a blog. Because my MS is about more than just me. And some things are just between us. But maybe it’s also important not to minimise just how profound (and terrifying) that a relapse can be.

My memories of that time are sporadic. Some things I know from stories and conversations with others. Some things I wrote. The saddest Facebook post from that time reads, “I miss me.”

There was such a feeling of desolation at that time. The lesions on my brain were most prominent around my language and emotional centres – for an English/Languages teacher, without my words, I didn’t know who I was. I couldn’t trust my memory or my mind. Even today, I still feel the loss of memories around that time, trying to piece together moments in relationships and significant events from photos and other people’s stories.

In hospital, the doctors would ask questions to assess my awareness.

“What month is it? What day? What’s the time?”

Apparently, I was so anxious about these questions, I started asking people for the time, constantly. I couldn’t read the analogue clock on the wall. 

The next day, the doctors come in and ask again. They look around, to see what I’m trying to look at and laugh: someone’s hung a digital clock on the wall. 

And I’ve done it again. I’ve started to give an example of my cognitive decline and turned it into a punchline.

Less funny: There’s a scar on my inner thigh from where I tore out a cannula. 

I found the scar before I learned how it happened. I was constantly pulling cannulas out (the nurses tried wrapping bandages around my arms and writing ‘Don’t Touch!’ – although I couldn’t read at the time). One afternoon, the nurse stopped my partner entering my room, wearing a surgical gown (not usual). Later, he found out that the nurse’s clothes were covered in my blood – the gown was to stop him panicking. 

I just wanted to go home. 

My deterioration was so rapid and severe – I’d forgotten how to eat, how to speak - that I was referred to a specialist in Melbourne. When he reassured us that it might take 18 months to regain 95% of my ability, I was only further devastated. I have an intellectually demanding profession and have always been surrounded by intelligent, highly educated people: family, friends, colleagues; even at 100% I often didn’t feel smart enough. Being ‘smart’ made me, me – what am I without that?

Sometimes, I found workarounds. When the neurologist asked me to push my foot up against his hand, I couldn’t make sense of the words. I understood ‘push’, I tested directions for resistance; once I had the right direction, I pushed. I knew I was cheating – but I don’t think I’ve admitted to anyone that it was the physical, not the verbal, that helped me respond. Even then, I knew it was reason for concern.

A few years ago, I found a photo from that time in my life. I was smiling, but my expression was…

Vacant. 

I tore it up and threw it in the bin.

With steroids and the right medication, I improved rapidly, relearning how to eat and read and function again. But it has taken a long time to trust myself again, to stop looking at someone else to answer questions for me. To have faith in my body that when I hold something in my hands, they will not spontaneously start uncontrollable shaking (usually my right hand), or just suddenly let go. To accept the loss of the future I had imagined, or maybe, a loss of choice: every decision from this point onwards, must factor in my access to medication and medical services, and the potential for a future relapse (or the possibility of developing secondary progressive multiple sclerosis).

It has taken a long time, but things are Ok. The future I’m building might not be the one I imagined when I was twenty years old, but I think it’s looking pretty good. My health is stable; my medication is effective. And only occasionally do my hands and feet let me down. (My brain, more often.) 

Who am I? I’m someone living with MS.

How can I help?

It was probably inevitable that I would reference books in a blog for the MS Readathon. Hirotada Ototake’s book, ‘No One’s Perfect’ had a profound impact on my perspective on the world, even before I lost trust in my own body. His memoir left a lasting impression.

The greatest influence for me, I think no one would be surprised to hear, was the impact of his teachers. One teacher opted for the ‘no special treatment’ attitude, which meant Ototake was included and participated in all areas of schooling with the same expectations as the other students (as far as he was able). Later, another teacher took the view that if Ototake couldn’t do the same things as the others, they would find an equivalent task that would enable him to contribute meaningfully. Ototake appreciated both approaches at the time they were provided. It’s a powerful representation that, not only do different people need individualised approaches, but the same person, at different points in their life, needs different approaches. 

This is my round-about way of saying that there’s no one ‘right way’ to offer support; not to someone with Multiple Sclerosis (because we’re all so different), and not even to me (because it changes, depending on my capacity, my mood, my…). I realise that’s not especially helpful, if you were hoping to learn the ‘right thing’ to do or say. To be honest, in the moment, I wouldn’t know what to say to me. Humour or something unexpected have usually been successful, helping me to laugh at myself and my situation.

One of my favourite responses, that I remember, was during my flare. A friend was trying to have a conversation with me and I couldn’t remember details that I was aware I should know, I couldn’t focus or comprehend what was being said. When I tried to explain that (because I’m sure it was less than articulate), her response was a smile and, “That’s Ok.” 

Another response that I remember, for very different reasons, was at a conference, years later (I had reached some acceptance with my situation at this stage). Chatting with another participant, we’d made a connection through a mutual colleague. “I hear,” he says, at the same volume we’d conducted the entire discussion, before dropping to a whisper, “you have MS.” 

At the time of my diagnosis (and the relapse that precipitated it), a friend introduced me to The Spoon Theory, created by Christine Miserandino. The spoons were an analogy that Miserandino used to explain to her friend the impact of living with Lupus, her own invisible illness. At a time when my body had betrayed me utterly and unexpectedly, it was a useful way to explain to myself why things were harder, to ease up on myself. It helped me understand what was going on: that washing my hair wasn’t suddenly difficult because it was just ‘washing my hair’ anymore – it was reaching up, it was scrubbing, it was rinsing; it took energy and balance and cognitive effort. And it didn’t hurt that the spoon story was accompanied by a tangible symbol and a delightful pun: Get Well Spoon! It also works as short-hand when I’m trying to explain to someone why I’m struggling. I’ve learned to use the word ‘fatigue’ rather than ‘tired’; because ‘everyone’s tired’ or that’s ‘just age’ or it’s ‘that time of year…’ Truth be told, sometimes it’s hard for me to recognise it: I’ve never been this old before, I don’t know if this is normal.

For me, the ‘right thing’ to do or say depends on the person. Much of the time, being able to laugh at things, make fun of the situation, is my preferred approach. For me, talking about things removes some of the power it holds, the fear associated with it, so I’m happy to answer questions and have conversations about MS. And if I need to cry or a serious talk, I have my people.

“Don’t let the bastard beat you!”

These were the words of my critical care nurse when I was hospitalised during my relapse. As someone living with Multiple Sclerosis herself, she understood more than most what we (because it wasn’t just me) were going through. And for me, she became a symbol that life would still be possible. I cannot imagine many jobs as physically, mentally and emotionally demanding as nursing – and she managed both that and MS. I don’t remember much of that time, but that experience gave me a profound appreciation for nurses.

When I received my diagnosis, I was advised to avoid online forums: too much doom and gloom (which is probably unsurprising, and equally unhelpful, given one of the symptoms of MS is a ‘sense of impending danger’). Often, when people learned of my situation, they’d tell me about a friend-of-a-friend who also had MS, but at that stage, I didn’t know anyone else personally. I didn’t have a community.

But.

Every four weeks, I’d go to hospital and sit with other patients who had relapsing-remitting MS. Some of those people had travelled two hours to turn up, early on a Saturday morning. For an hour and a half, we’d sit in day surgery with cannulas in our elbows or hands, receiving our medication through infusion from a nurse who had the training to deliver it. In the beginning, I was too sick to even understand the conversations around me, but I do remember one man in a wheelchair constantly cracking jokes. Later, as I became more confident and familiar with the people around me, I’d ask questions. I learned about different diagnosis journeys, different symptoms, different lives. There were people who worked at universities, in retail, in construction. People who were retired, people who had young children, people barely out of their teens. Men and women…but mostly women (and a weirdly disproportionate number of teachers). Later still, I became the one sharing my own experiences and (for whatever it’s worth) my advice. Over the decade, the people in this group changed: some changed medication, some moved away, some died. Some of those people have become my friends.

Now, my medication is given via two injections. I still travel once a month to the hospital to receive it from the same nurse who was giving the infusions twelve years ago, but I’m in and out within fifteen minutes. It’s convenient, but if I’m lucky enough to run into another person, it’s usually only as we pass by in the hospital corridor; a quick 60 second recap on our past month, and we move on.

That was my MS community and while I miss aspects of it, it happened at a time that was necessary and right for me. Beyond that, I have a broader community, evident here: the people that have taken the time to read this, those who are participating or donating or raising awareness for the MS Readathon. Thank you.

I don't look sick.

That’s the nature of an invisible illness. You might not notice that the toes of my left shoes are scuffed from foot drop, or that my irritability each month comes from fatigue as my medication is due, or that my difficulties with cognitive processes are from the lesions on the language, memory and emotional centres of my brain. It’s been twelve years now, since my last relapse.

I’m one of the lucky ones. When I visited my local GP, confused about some spreading numbness across my back, thighs and hands, it was one of the first things she thought to assess. Others in my situation haven’t been so lucky. For some, a diagnosis might take years, dismissed as a stomach ‘flu or vertigo or ‘imagination’. The longer a diagnosis takes, the more likely irreversible damage is done to the brain.

I’d heard of MS (even if I didn’t understand it at the time) through participation in the read-a-thon as a kid myself. My GP knew that Multiple Sclerosis was something to consider, especially for someone like me. (Approximately 33 000 people in Australia live with MS: nearly three quarters are women, with an average age of symptom onset of 30 years.) When I inform people of my diagnosis, most reference the Readathon as a point of understanding. 

Awareness means faster referrals by GPs. Awareness means greater understanding that disability is not always in a wheelchair. Awareness means increased funding for management, quality of life and - maybe one day - a cure. 

Awareness means talking about Multiple Sclerosis; the Readathon is a way to start that conversation.

My Impact

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So far I’ve raised $1,325 to help 46 families impacted by MS

Our Impact

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$1,325

My Goal

$1,000

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$29

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can keep Help Lines open across the country that offers specialist support and information as well as a friendly ear ensuring no family or parent feels alone
$52

$52

can connect a family to resources, advise and tips for managing multiple sclerosis and neurological conditions as a family
$67

$67

can provide an hour of one-on-one personalised support to families to help navigate every step of their journey including applying for the NDIS that offers emotional and life changing financial support

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can provide a one hour MS Nursing appointment for families to get help through some of their toughest moments in their life including symptom and treatment management

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Thank you to my recent sponsors

Laura, Dayna And Co
$106.75

Go you good thing! Very proud of you xxx

Leah Heanes
$58.12

You are amazing!

Cheryl Benn
$150

Hi Tanya Better late than never! Words can’t express how much I respect and empathise with you. You’re an amazing human! 🥰

Jenna
$23.81
Anonymous
$58.12

You got this!!!

Kiyomi Calwell
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Sharon H
$33.24

Love the spoon analogy!

Em
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Tara Suidgeest
$34.40
Melinda Mendonca
$74.19
Rachael Squire
$48.43
Kathryn O'sullivan
$24

Game on!

Graeme Fischer
$24
Melanie
$33.24
Rebecca L.
$32.79
Katrina Stewart
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Kirsty Phillips
$23.50
Thelma Watkins
$50
Mitch Fischer
$56.96

Why was the librarian kicked off the plane? Because it was over booked.

Peter Stevens
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Christina
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Amber
$52

Well done :)

Liz
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Sandra Taylor
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Graeme Fischer
$100
Tanya Fischer
$54.84

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