Brachial Neuritis and Me - 10 Lessons I Learned

Brachial Neuritis can come on suddenly. Univited. It may leave disability in its wake. This is my story. These are my lessons learned.

Monday 13 May marked the 1st anniversary following the onset of my right Brachial Neuritis - the day that seemed to change the course of my life.  It was important for me to stop and reflect on the journey and the lessons I have learned.

The Onset:

On the morning of Saturday 13 May 2023, whilst sitting and writing in a journal, I developed a sudden onset of excruciating right-sided neck and thoracic pain, and nausea. 

I had never experienced anything like this before.  It stopped me in my tracks.  I rushed to the toilet as I thought I would be sick.  I tried stretches and heat to see if I could ease it. It made no difference.

The pain was quickly followed by right arm weakness,  pins and needles, and numbness from the elbow down to my middle finger, ring finger, and small finger.  My hand felt weak and heavy. 

I knew it had something to do with my Ulnar nerve - but I wasn’t sure what or why.

The symptoms got worse. I lost my ability to complete some functional tasks. Other tasks I managed with a struggle.

I couldn’t lift the kettle to make a drink; I was unable to turn the key in the car ignition or open the boot; I couldn't use a knife in my right hand when eating; I was unable to use a keyboard; I could not hold my violin bow when attempting to practice. I struggled with taking money out of my purse to pay for shopping (the shop assistant had to do it); I was dropping things (including cups and plates); I struggled with doing up shoe laces. The list goes on.

For 2 weeks I was unable to sleep - waking every 2-3 hours to stretch my back and arm.  Pain was present day and night - but worse at night because I wasn’t moving and found it difficult to get comfortable. 

My arm felt frozen, as though I had placed it in a freezer. The cold seemed to gnaw down into my bones. I had thoracic back pain and muscle tightness.

Later, I went on to develop muscle atrophy (shrunken muscles) in my hand (hyperthenar and hypothenar eminence and, interosseous muscles)  and my forearm.

Now:

Now 1 year later, there have been improvements. 

Functionally,  I can use a keyboard without wearing my splint; I can hold a bow in my right hand to play my violin again; I can turn the car key in the ignition using my right hand; my thumb sits better aligned so I am no longer catching it and don’t have to wear a thumb or wrist splint. 

However, it is far from perfect and I continue to have weakness, sensory loss, and altered sensation in my forearm and hand.

I notice the cold affects the level of function in my hand - slowing it down, making it more sluggish, and reducing the dexterity in my hand.  This is helped by wearing fingerless-style gloves to keep my palm area warm.

It has been a tough and challenging year.  However, I am in a ‘better place’ than this time last year! 

It has been important for me to stop and reflect on the improvements that have occurred and the lessons I have learned over the last year.

Lessons learned:

1. Be your own advocate

• The NHS is overstretched with long waiting lists and a lack of staff and resources.  It cannot advocate for one patient in the sea of many.  So, I learned to be my own advocate. To speak up. To say what I needed.  To have difficult discussions. My motto became ‘pester or it will fester’.
• I learned that if I didn’t speak up things didn’t get done or weren’t followed through. 
• I learned the importance of checking my health record on the NHS App; educating myself on the outcome of scans and tests; ensuring suggestions from medical professionals were followed through; and having open, honest conversations with medical practitioners to get a diagnosis, and access to tests and other services I needed.

"I learned a long time ago the wisest thing I can do is be on my own side, be an advocate for myself .....”- Maya Angelou

2. In a group practice, when things get complicated, liaise with 1 GP and not the whole practice

• I had 5 week waits to get a GP appointment so I wanted to maximise the time in the consultation.  When switching between GPs, I found it wasted clinical time due to having to explain my history.  I felt it impacted the smoothness of onward referrals and overall management. 
• In the end, I reverted to only seeing 1 of the GPs for better continuity of care.

3. Allow time and space to feel and release the build-up of emotions

• I felt angry; desperate; frustrated; abandoned; let down (by my body, the NHS, my profession); worried about my future and the chances of a reoccurence; not knowing what was wrong. 
• The cogs of the NHS turned slowly.  I wondered if I would get a diagnosis and treatment in time to save my atrophied nerve.  Would this condition improve or would I have to give up my profession?  How would I pay my bills?  Would I need surgery? So many questions whizzing around in my head.
• My worries were useful as they guided my ‘Action Plan’.   My Action Plan consisted of the things I could control.
• I allowed time to cry when I needed it. To release the pent-up emotions caused by the turmoil of uncertainty and,  the frustrations and slowness of support services.

4. Allow space for gratitude during this troubled and uncertain time

I have done a gratitude practice for years.  Now, more than ever, it was important for me to notice the things I was still grateful for. I continued to write 5 things at the end of each day. 

5. The importance of having a diagnosis 

• 5 months following the onset of my symptoms, I received a diagnosis from the Neurology Consultant.  It was an important and positive turning point for me.  
• Having a diagnosis gave me closure.  It allowed me to move forward with my life and plan for the future; it gave me some hope that there might be some improvements in the years ahead (though unlikely full recovery).
•  I was grateful my condition was not progressive! I now knew what I was dealing with. There was no reason for the sudden onset of symptoms; there was no treatment, except symptom management; it could come back again; it might improve over the next 2-3 years.  I started to feel some hope.
• I reevaluated and prioritized what was important in my life. I set clearer work/life boundaries.  I planned not to take my health for granted again. It had to be a priority rather than only addressing health issues when 'I had the time'.

6. Have close friends around for support and to make you laugh

This was important for me.  I always knew I had a listening ear and the ongoing support I needed.  There was nothing friends could do to help 'the condition' - but it was nice to know they cared enough to ask, offer help, and make me laugh.

"Words of kindness are more healing to a drooping heart than balm or honey." - Sarah Fielding

7. Life is short and does not come with guarantees or an expiry date 

•  Illness came, like a great tornado, tearing through my ordered life and dreams!!  The plans that I had to go traveling the following year, just ended up in a slag heap of uncertainty. 
• Illness came unannounced, without any invitation. It is still hanging around like an unwelcome guest.
• It forced me to take stock, to evaluate my life and priorities. 
• It forced me to deal with my fragility; my assumptions that I would always be well enough to do as I wished until I was ‘older’ (maybe into my 80s); my immortality.  
• It made me face the fact that illness and death walk alongside us - and we never know when they will strike or what carnage they will leave behind.  
• It forced me to ask the question: what do I want the remainder of my life to look like (especially as I was coming up towards my 60th birthday)?
• It made me feel blessed that, up to now, I had enjoyed a ‘healthy life’ - with no real impairments or disabilities.
• It made me feel more compassion for those whose lives have been changed by long-term conditions, illness, trauma, and mental health problems. Those whose dreams have been dashed.  Those who had died far too soon. 

8. Be kind to yourself and bring self-compassion to the table

• I was angry with my body for letting me down.
• I did not feel that this withered, wasted hand was part of me - it had become my nemesis. 
• I was angry because I had tried to live a healthy lifestyle (apart from the weekly pizza and daily sugar treat!) and what had been the point if something like this could suddenly happen?
• During this time, I struggled with my meditation practice.  My normal peaceful body was now racked with back and arm pain. An arm that felt like it was stuck in a freezer (due to sensory changes).  It was difficult to sit still and focus.  I found well-meaning wishy-washy meditation phrases irritating as I clicked on my Meditation Timer App and they appeared! 

So, I used the self-compassion techniques I had learned over the years to be more accepting of these feelings and emotions and to treat myself as I would a best friend. It took concerted effort.

9. ‘Time is a healer’ - to a degree - and 'patience is a virtue'

• After 2 weeks my 10/10 pain had subsided to a more manageable level and was more intermittent than constant.
• After 2 weeks I noticed I was starting to sleep through the night. No longer was I waking every 2 - 3 hours to get out of bed to stretch my arm or back. 
• I can now do more things than I could a year ago, like: turning the key in the car ignition; opening the car boot; using scissors; tying my shoe laces; using the keypad on my laptop; keeping my thumb out of the way during functional tasks (without using my splint); holding and moving my violin bow when practicing.
• I have bad moments in my day when my hand dexterity is worse and this is generally when my hand gets cold - so I use fingerless gloves or similar.
• I still have significant weakness in some of my hand muscles and altered sensation in 2 fingers and down the outside border of my hand and forearm (ulnar distribution). This may OR may not improve.

10. Don’t be the total sum of your condition

• I didn’t want the neuritis to be an excuse for me not to do or try something OR for it to become the focal point of conversation with others. To allow it to take over my life, to become my identity, would make my life ‘smaller’.  I could accept it being in the passenger seat but not in the driver's seat.
• I did need some time to focus on and be with this new condition - to come to terms with it. But, I also needed to find ‘myself’ again - the new me.  
• My life became divided into 2 phases:  “before the hand” and “after the hand”.  I would try out the “before the hand” activities to see if they were still feasible “after the hand.”  I still want to see if I can use my power drill when doing DIY! I haven’t tried it yet.
• During the early days (acute phase), I found new ways to do things - e.g. using a serrated chopping knife rather than a normal knife to slice my food; using my whole fist to turn the key in the car ignition; angling the tin opener differently; splinting my thumb and wrist with a bandana and micropore tape to use a keyboard; tipping my kettle rather than trying to lift it.
• I found that wearing a fingerless glove, or sleeve, with a thumb loop stopped my hand function from slowing down during cold weather  (cold weather makes my ulnar nerve impulses slower and my movements sluggish).
• I continue to learn and adapt. 
• I no longer need to wear a thumb or wrist splint.

Moving forwards:

I will continue to reflect yearly on any progress that occurs over the next couple of years. The anniversary date is on my calendar.

I plan to research my condition more to see if there is anything further that can be done.

After much thought, I decided to leave my profession as a physiotherapist as it no longer supported my health needs and life priorities.

I now embrace my early retirement and am taking time to develop my curiosities and see where life takes me.  I feel excited about what is to come.

Final note:

My lessons are based on my personal journey.  I acknowledge all those who are not as fortunate as me.  Those who have had life-changing conditions and illness;  those with deteriorating conditions, mental health challenges, and chronic pain. 

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