Barbara’s guest post is the 34th post in the segment on my blog, called “The Reality Of…” which gives others the ability to share their story and raise awareness of the disabilities, illnesses, impairments and invisible illnesses that they have.
As a Health & Wellness Coach, Barbara Babcock supports individuals to live well with the impact of a challenging health issue and their families. She has a M.A. in Coaching Psychology and is an ACC credential coach with the International Coach Federation.
Barbara also has personal experience of having had a serious illness and long-term condition and being in the carer role; and professional experience of leading a national UK charity and conducting research into the impact of coaching on people living with neurological conditions.
Here she shares her story of living with the impact of the rare neurological condition Transverse Myelitis.
What I Did When I Suddenly Got Ill With The Rare Neurological Illness Transverse Myelitis
I originally wrote this article in 2016 for the Siegel Rare Autoimmune Association (Formerly known as Transverse Myelitis Association) in the USA and it first appeared here. I shared it in 2018 on my website for Rare Disease Day and I share it again here. A few changes have been made along the way.
Before I explain how got Transverse Myelitis, how it affected me and how I coped, I’d like to explain the illness.
What Is Transverse Myelitis?
Transverse Myelitis, which I’ll refer to as TM, is a rare neurological inflammatory condition resulting in inflammation in the spinal cord. The inflammation can be at any point along your spinal cord and you will be affected in your body from that point downwards. For example, if you have inflammatory lesions in the cervical region, your arms, torso and legs will be affected. If the lesions are in the thoracic region, your torso and legs will be affected but not your arms.
It is an auto-immune disorder which means that your immune system attacks your body instead of the virus, infection or whatever it was supposed to be dealing with. It is not an illness you ‘catch’ from anything or anyone; it’s not contagious or genetic.
Many times, the doctors cannot find the reason why you get TM so they refer to it as ‘idiopathic’, i.e. we don’t know why it happened. That can be hard for people because you never know the why and so you don’t know what to avoid going forwards.
TM is in the same disease family as Multiple Sclerosis, just much more rare. Approximately 300 people per year are diagnosed with TM in the UK.
Also TM is typically a one-off episode where only your spinal cord is affected whereas MS is a many time disease that can affect your brain and optic nerve in addition to your spinal cord. People with TM can experience the same symptoms as someone with MS who has lesions in their spinal cord.
What Happens To You When You Get Transverse Myelitis
The onset of TM can be sudden over a few hours, or more gradual over days, weeks or even months. Red flag symptoms can include back pain (not just lower back pain), paralysis or muscle weakness in arms and/or legs (and hence mobility issues), bladder and bowel issues, sexual dysfunction, sensory disturbance (like a numbing sensation), and pain which can feel like a shooting, stabbing, crawling, freezing, hot or banding like pain.
TM is typically a one-off episode which can leave a person with ongoing residual symptoms that vary in their severity such as paralysis, weakness, mobility issues, bladder and bowel issues, sensory disturbance, neuropathic pain, fatigue, and depression.
The recovery process is a very uncertain one and doctors cannot predict how much functionality a person will regain and how long it will take. Recovery will start a few weeks to months after onset and can continue for more than two years.
Every person is affected differently by TM. Some people can be left with a lifelong disability, others can make a good recovery. For some people, TM is the first presentation of Multiple Sclerosis or Neuromyelitis Optica. For a small percentage of people, TM can be recurrent.
My Story Of Transverse Myelitis
– The Onset
On 10th October 2008 I noticed a strange feeling in my bum. It felt like a marble was stuck up there. The marble felt like it was growing in size over the weekend. It felt the size of a ping pong ball on the Sunday.
I woke up in the middle of the night with stabbing, shooting pain and pins and needles throughout the saddle area. It hurt to go to the bathroom. I couldn’t really feel down there. I knew something was wrong. In the morning my husband encouraged me to call the doctor.
I was writing a presentation to deliver that evening. Sitting for any length of time was painful. So was standing. I felt like I poo-ed my pants and was constantly checking whether I had. I hadn’t. Walking was painful.
I finally called and spoke to the doctor the Monday afternoon, 13th October. She called me back advising me to go to A&E (accident and emergency) as soon as possible. I cancelled my presentation.
In A&E, a host of tests were done. Despite being in pain, I was pretty relaxed, chatting with my other half and making my way through a bag of Haribo sweets I asked him to bring me. (Learning: Do not eat sweets whilst in A&E. It wreaks havoc on your blood sugars, and the nurses ask you all sorts of questions about whether you are diabetic and may not be convinced if you tell them no.)
The doctors wanted to admit me. I was meant to fly to the USA in three days for my sister’s wedding to be her maid of honour, so I wanted to return home. They strongly advised me to follow their advice. I did.
Searching For What Was Going On With Me
Tests commenced. Long sessions in the MRI scanner. A lumbar puncture that required a longer needle than what the doctors were initially using, and 3-4 tries before they got a clean sample of my cerebrospinal fluid. I had to remind the very excited medical students that there was a patient at the end of the needle who was scared, in discomfort and needed to be looked after. I experienced an awful headache for a week afterwards due to the lumbar puncture.
With each passing day, the pins and needles and stabbing and shooting pain progressed down my body. Walking felt like pushing through the heaviest of treacle and my legs felt twice the size they actually were. I couldn’t walk more than 10 steps so acquiesced to using a wheelchair. I never made it to my sister’s wedding.
The pain, odd sensations and banding crept above my waist. More tests were ordered. Banding pain joined the noisy party inside of me. I felt like I couldn’t breathe and I could feel the panic rising. I finally figured out I could breathe and that what I was experiencing was some kind of pain. A couple of years later I learned this symptom was the ‘MS hug’ that people with TM or MS can experience.
Water hitting my skin and wearing clothes became very painful. I couldn’t sense temperature either. I still showered telling myself I was going to maintain a routine and be clean despite everything. Time feels plentiful in hospital so I laid there doing visualisations of a healing white light going up and down my spine and forced myself to walk as far as I could however badly I was walking.
Getting Diagnosed With A Second Rare Neurological Condition
A surprise for me and a highlight for the neurologist leading my case was accidentally discovering that I have another rare neurological condition in her area of expertise of movement disorders – geniospasm. It is a rare hereditary movement disorder where the chin shakes at random times and often for no reason. So I was discharged from hospital with two rare neurological conditions. I’ve had geniospasm all my life and never knew it was a recognised rare disorder.
But in relation to Transverse Myelitis, they didn’t tell me I had that. They only told me that I had ‘inflammation of the spinal cord’ with two lesions at C4 and C5, was seriously ill, should not work for several months and rest. I was worried as my job had been made redundant in the summer, I had been actively looking for work, and was due to have a second round of interviews for a job.
After Hospital – Coping With Transverse Myelitis
I returned home from hospital after 2 weeks. I felt scared leaving what felt like the safe cocoon of the hospital where people knew what was going on with me and could help me.
I had to rest a lot because of the fatigue and pain. A two block walk to the store and back would tire me out so much I slept for the rest of the day.
As we were technically on holiday, my other half was able to be at home with me for a few days to make sure I could look after myself. The day he returned to work, he learned that his job was being made redundant. Another thing full of uncertainty to deal with.
I learned of my diagnosis in a letter the neurologist sent to my GP, a copy of which was sent to me. In it was written ‘cervical myelitis’. So I naturally turned to Google and what I read scared me. I experienced so much anxiety and fear for my health, my future and my life.
The quality of my sleep wasn’t great due to the anxiety, pain and geniospasm. For some reason the TM re-triggered the geniospasm, my chin would shake very hard and wake me up at night.
I couldn’t do much at all and was bored senseless. So I started genealogical research. Although it was painful and slow to type, it was a good distraction from the pain and fatigue, it was interesting, and I felt I was using my time productively. I often also had an interesting piece of info to share with my husband about my family at the end of the day. The genealogical research gave me something to talk about other than my health.
In time, I found the Transverse Myelitis Association in the USA and the Transverse Myelitis Society in the UK where I live. The information was limited at that time but a talk by a neurologist at the TM Society’s London support group answered some of my questions. I also had regular follow-up visits with the neurologist which helped too. I was one of the lucky ones to see a neurologist regularly post-diagnosis and I think the geniospasm had a role to play in that.
The months passed and bit by bit, I improved. The fatigue started to dissipate. I swam and did yoga. I started a new job and was thankful it was part-time because I was still experiencing fatigue and pain. I started studying for my first coaching qualification and that helped me immensely to come to terms with what happened.
Dealing With More Stressful News
A completely separate issue from the Transverse Myelitis was learning at this time that we would not be able to have children. Between the death of my father in 2007, caring for my mother after she had emergency heart surgery in Spring 2008, my job being made redundant soon after that, getting seriously ill in Autumn 2008, then my husband’s job being made redundant, that news felt like another blow in quick succession and a particularly cruel one.
People with serious health issues and particularly chronic ones often mention about not having a choice to go on, you just do. I get that.
Nine months later, I still had sensory disturbance, neuropathic pain, some fatigue, and didn’t have full sensory awareness in my hands anymore. The neurologist said that might be it for the rest of my life. It felt like something finished when I heard that prognosis. A finality. On the outside, I looked and functioned normally. All things considered, my recovery was a good one.
Making Meaning Of My Illness Experience
I got involved with the Transverse Myelitis Society and offered my skillset of NLP (Neuro Linguistic Programming), coaching and adult learning for the benefit of members through delivering presentations and writing articles. I had been using my skillset on myself and found it immensely helpful.
In 2010, I was asked to join the TM Society’s management committee. In 2011, I started a masters in coaching psychology and focused my research on the impact of coaching on the wellbeing of people living with TM and their primary caregivers. I included the carer, often a family member, as I saw how they are also affected. I was curious whether coaching could help people find a way to live well (enough) with the impact of the condition. I learned it can. You can read a summary of that research project here.
Helping Others Can Help Us Make Meaning Of Our Illness Experience
In April 2013, I became Chair of the UK TM Society for a three-year term which finished in April 2016. It was an opportunity to use my skillset in a greater way for the benefit of our members. This aligned with my values of being in service to others for a good cause and developing myself.
I enjoyed introducing new services, events and information for our members: a Coaching Bursary Scheme, an Equipment Grant Scheme, the Family Weekend, and information such as the TM Condition Insight Report and TM Frequently Asked Questions document.
I enjoyed having the opportunity through charities such as the Neurological Alliance, National Voices and Spinal Injuries Association to raise awareness and represent the needs of TM Society members across the charity sector and amongst government officials and the NHS.
Life Beyond Transverse Myelitis
Even though I stepped back from the Chair role and the TM Society’s management committee three years ago, I am still involved as a volunteer running the Coaching Bursary Scheme and Family Weekend.
I also helped a neurologist design an aspect of a research project on TM and although we didn’t get the funding for it, we did learn some valuable things regarding the psycho-social impact of TM and the care people experience in the NHS.
I studied Acceptance Commitment Therapy because to learn another approach to helping people through the process of accepting difficult situations. I’ve studied Systemic Constellations, also known as Family Constellations, to help people resolve issues relating to family dynamics. This all feels like good work to be doing. It is also work I very much enjoy and wonder if ‘work’ is the right word. I feel so grateful.
Learning To Live In A Changed Body
I think back to nearly 11 years ago when I experienced the onset of TM and the day I was told by the neurologist the symptoms I have is what I will most likely have for the rest of my life. Constant pins and needles in my hands and hence reduced sensory awareness. How anything I touch feels like sandpaper. The cramping in my fingers during the winter months.
The random sensory disturbance which happens throughout my body. Some bladder and bowel issues which are manageable and I have ongoing treatment for. The buzzing I feel in my spinal cord whenever I bend my head forward.
These symptoms are all invisible. And manageable. I use the symptoms as a reminder to look after myself and live my life well. The work and studying I have done since TM joined my life has helped me to do that.
What We Think Is Broken Can Actually Nurture Beauty
When I reflect on my involvement with the TM Society, the healthcare profession and charity sector in the UK, and my coaching work, I think of Kintsugi bowls. They are Japanese bowls that broke and are mended with gold seams. It’s about honouring the wound and beauty from the brokenness. It is a symbol of rebirth, that nothing is ever truly broken beyond repair.
So our bodies may have been wounded. At times we may feel that they are broken. But beauty can spring forth from the brokenness. And that is my hope for all of us affected by a challenging health issue, including our children and families: may we nurture and grow the beauty that we still hold within us.
What’s It Like For You?
How do you nurture the beauty that is still within you? Share your story in the comments below.
I blog on the many aspects of living with a challenging health issue providing you with hints, tips and coaching techniques you can use to deal effectively with the emotional impact, find non-medical ways to manage your health issue, manage relationships, return to work and rediscover your life purpose. You can read them here.
My Favourite Superhero
Wonder Woman! I loved the most recent movie on Wonder Woman. I thought it portrayed her as strong, independent in thought, and someone who took risks leaving the safety and comfort of her home to discover herself and her purpose.
Thanks Barbara for sharing your story with my readers and me!