Guidance for living well with a serious illness or injury

Guidance for living well with a serious illness or injury

You may not be given guidance for living well with a serious illness or injury: what to do, what to avoid, etc. And in the early stages, a lot of your energies are focused on treatment, surviving the ordeal and recovery.

But then a few months or even years after the medical crisis, there’s that part of you that doesn’t feel quite right, definitely not the same as before. Living in a changed body and that experience of losing control can take its toll not just on your physical body, but your mind, heart and soul. I am writing this post to speak to that part of you.

 

Healing your heart, mind and soul

 

I believe that to bring healing to our hearts, minds and souls, we have to get to know ourselves in ways we may not have had to prior to the illness or injury.

People often say they love people watching and learning about how ‘people tick’. The work I am speaking about is learning about how you tick so you have greater control over your emotional, psychological and soul health.

I want to share with you some questions which will help you get to know yourself better and thereby develop your own set of guidance for living well with a serious illness or injury.

I came across these questions whilst travelling across the internet. They were created by John O’Donohue, an Irish poet, author, philosopher and one-time priest. He is no longer with us, which is a shame as his work is lovely. I learned they come from the book To Bless the Space Between Us: A Book of Blessings. So of course I immediately purchased it to add to my collection.

 

Pic of book To Bless The Space Between Us

New book in the house!

 

The book offers thoughts or ‘blessings’ for periods of change in your life whether that be marriage, birth, new job, new home, adulthood, illness or something else. They are meant to help you on your journey from the known into the unknown, which a transition such as a serious illness or injury is all about. It’s very good. And it’s a book you dip into as and when.

Here are the questions.

 

At the End of the Day: A Mirror of Questions

Copyright © 2007 by John O’ Donohue

What dreams did I create last night?
Where did my eyes linger today?
Where was I blind?
Where was I hurt without anyone noticing?
What did I learn today?
What did I read?
What new thoughts visited me?
What differences did I notice in those closest to me?
Whom did I neglect?
Where did I neglect myself?
What did I begin today that might endure?
How were my conversations?
What did I do today for the poor and the excluded?
Did I remember the dead today?
Where could I have exposed myself to the risk of something different?
Where did I allow myself to receive love?
With whom today did I feel most myself?
What reached me today? How deeply did it imprint?
Who saw me today?
What visitations had I from the past and from the future?
What did I avoid today?
From the evidence – why was I given this day?

 

Thought provoking aren’t they?

 

Pic of woman reading thought provoking questions which get her to think about how her day was

Reflecting on how your day was

 

If you wish, buy the book. Put the questions somewhere where you will see them every day. It may be enough to glance over them and keep them in mind as you go about your day.

For others, you may wish to use this to explore yourself more deeply and write responses to these questions. Particularly if you are on a quest to change something about yourself (even if you don’t know what that is yet). How often you write your responses is up to you. Some of you may wish to do it every day, or every few days or once a week.

These questions provoke deeper thought, the kind of reflection that helps you identify patterns and themes and identify the changes you wish to make. Self-reflection promotes self-awareness, one of the critical components of change.

 

Pic of formula of change equals self-reflection plus intention plus action

A formula for change

 

What’s it like for you?

 

What do you think of these questions? Which ones particularly resonated with you? Are there questions you ask yourself which you don’t see here? Share your thoughts in the comments below.

If you are living with a serious health issue, which may be a serious illness or injury or chronic illness, or are caring for someone who is, and would like support to return to a sense of wellness, have a look at how we can work together and get in touch for a free no obligation consultation.

 

Help with research on acceptance

 

If you or a loved one experienced a serious health issue in the past 2 years and are struggling or wondering if you can accept what has happened, I would love to speak with you. I am researching the concept of ‘acceptance’ within the context of a serious health issue by collecting people’s experiences with it. Click here to find out more. And in exchange, I offer you a free 1 hour coaching session.

 

Pass it forward

 

Although I wrote this blog in the context of living with a serious health issue, the ideas contained within are applicable to everyone. If you think someone you know would benefit from reading this blog, or you just want to spread the ideas, click on the icons to share.

Questions by John O’Donohue. The rest of the blog is written and pictures drawn or photographed by Barbara Babcock, 2018.

 

References

As published in the USA – O’Donohue, J. (2008) To Bless the Space Between Us: A Book of Blessings. New York, USA: Doubleday.

As published in the UK – O’Donohue, J. (2007) Benedictus: A Book of Blessings. London, UK: Bantam Press.

 

Managing your expectations of yourself when returning to work after a serious illness

Managing your expectations of yourself when returning to work after a serious illness

Managing your expectations of yourself when returning to work after a serious illness or injury is key for a successful transition. But because it is about you managing your expectations of yourself, it can be one of the hardest things to do.

You are someone who believes in doing a good job. And you will go the extra mile to make that happen. After all, you have high standards and are proud of that and the work you do. It gives you great satisfaction.

You may also feel the need to prove to others that you can still do your job and do it well. And you enjoy your job and are keen to continue in your role.

So you try to do your job as best you can, as close as possible to how you did it before your illness/injury. But despite your best efforts, you are finding you can’t. You’re tired, maybe feeling dejected and not feeling like yourself anymore. You wonder if you can still do your job. And you may be afraid others are thinking you no longer can. You try to find the energy to plough on, to keep going in the hopes your recovery will kick in and you will soon feel like your old self.

Managing expectations of yourself when returning to work after #seriousillness or injury is key for a successful transition. Yet it can be one of the hardest things to do #returntowork tell a friend

 

It’s understandable

 

You don’t know any different. As I often say, you don’t know what you don’t know when you are seriously ill or injured. We know what the doctors and nurses tell us and the messages society gives us around health, illness and disability (the latter which may not be relevant to your situation or correct). We know how different our bodies feel. But we often aren’t given info on how to live well with the ongoing impact of a serious illness or injury including returning to work.

So how can you stay in work doing good work and being happy with that whilst dealing well with the impact of your illness or injury?

As I said up front, managing your expectations of yourself at work is key. There are four things you can do which will help.

  1. Adjust your expectations of yourself
  2. Learn how to live in your changed body
  3. Learn how to manage the impact of stress
  4. Set your boundaries with others on what you can and cannot do and stick to them

 

Four things you can do to manage your expectations of yourself when returning to work

 

These may feel like pretty chunky steps. And they are. This is an ongoing process. Not a tick box exercise where you do steps 1, 2, 3 and voilà you are a new person. So for a start I just give you some key tips for each and refer you to related blogs I have written on related topics. What I do know from my personal experience and that of my clients is that these steps work.

Read about the 4 things you can do to manage your expectations of yourself when returning to work after #seriousillness or #injury #returntowork tell a friend

 

Managing your expectations of yourself requires you to adjust your expectations

 

Adjusting your expectations of yourself requires you to acknowledge the changes you have experienced as a result of your illness or injury. The changes may include what you are no longer able to do or unable to do as well or as quickly. You may have very much valued what you were once able to do.

They could also be new things you have to do because of your illness/injury. Like having to know where the toilets are where ever you go outside your home due to having bladder and/or bowel issues. Having to inject insulin before every meal due to diabetes. Or eating more healthily and exercising more.

Acknowledging the changes you have had to make may or may not be easy as I mentioned in an earlier blog on returning to work. It depends on the type of change and whether you would have welcomed the change pre-illness/injury.

Adjusting your expectations of yourself at work requires you to acknowledge the changes you have experienced as a result of your #seriousillness or #injury #returntowork tell a friend

 

Linked to this is redefining who you believe yourself to be. This is about change at the core of you, your sense of identity, which is a fundamental change. This is a journey and can take time. Being willing to try on other ways of being and doing in the world can help you move through this stage with more ease and less emotional turmoil.

 

Redefining your identity is a fundamental change in belief about who you are

 

Managing your expectations of yourself requires you to learn how to live in your changed body

 

The blog I wrote on preparing for your return to work has tips which will help you learn how to live in your changed body.

Pacing yourself to manage your energy levels is a key part of this. Clients have said learning to do less at work, not trying to be the hero and fix everything, and taking regular breaks helped. Also, being willing to use aids that helped them manage their symptoms, such as a hot water bottle or a fan to cool themselves. Which aids you use will depend on the ongoing residual symptoms you live with.

Setting goals for your rehabilitation and returning to work will also help. As well as listening closely to your body and making adjustments to your routine as a result.

#pacing yourself to manage your energy levels is a key part of learning to live in a changed body after a #seriousillness or #injury and will help you adjust to the work routine #returntowork tell a friend

 

Managing your expectations of yourself requires you to learn how to manage the impact of stress

 

It’s important to manage stress because it can exacerbate any residual symptoms you may be living with. This is stress from external events and self-induced stress.

I’ve seen with clients how stress at work kept then awake at nights, the lack of sleep contributed to their fatigue, the fatigue meant they could not work or work as much as they would like, etc. It became a vicious circle.

Self-induced stress often comes from our habitual ways of being and doing in the world which no longer serve us. But we might have not yet realised that our habitual strategies have outlived their useful life. It’s important to identify these and make changes. One client made changes by identifying what was in her control to do and as a result she reported feeling less pain.

I also recommend you read these two blogs on using your personal power well to manage your health and wellness – part 1 and part 2.

Being very aware of what causes you to feel stressed and managing the impact effectively can reduce any negative impact stress can have. Important when you are returning to work after a #seriousillness or #injury #returntowork tell a friend

 

Managing your expectations of yourself requires you to set your boundaries with others on what you can and cannot do and stick to them

 

This is so important. And can be so hard to do. Because it means you have to say no to people. And sometimes we don’t like saying no because we feel we aren’t helping the other person and we like to help others. Or we feel obligated to do what other people need from or want of us. Or we feel a need to make others happy by doing what they want from us.

This also requires you to develop the belief (if you haven’t already) that you are important, your needs are valid, you are worth it, and so it is ok for you to put yourself first and look after yourself. AND to operate on that belief in your life.

What I wrote about managing others’ expectations of you in a earlier blog in this series on returning to work helps you to start setting those boundaries on what you can and cannot do.

And remember, boundaries can change for the right reasons during the process of returning to work.

How easy do you find it to set boundaries at work and stick to them when living with the impact of a #seriousillness or #injury? #returntowork tell a friend

 

But something else is key in all of this

 

The willingness to adapt and be flexible.

And being gentle with yourself. Shower yourself with compassion.

 

Picture of a woman showering herself with self-compassion

 

If you try something and it doesn’t work, focus on what you learned and try something else. Also make sure to have good people at work and in your life who encourage you.

Remember, you are doing the best you can in not the easiest of circumstances.

 

Picture summarising what you can do in managing your expectations of yourself when returning to work after a serious illness or injury

A summary of the blog on managing your expectations of yourself when returning to work after a serious illness or injury

 

What’s it like for you?

 

What aspects of the above blog resonate with your situation? What do you find difficult or easy to do? If you have returned to work after a serious illness or injury, what have you done to manage your expectations of yourself? Share your thoughts in the comments below.

If you will soon be returning to work after a serious illness or injury or are already in the process of doing so and want to work through the recommended steps in this blog with support, have a look at how we can work together and get in touch for a free no obligation consultation.

 

Help with research on acceptance

 

If you or a loved one experienced a serious health issue in the past 2 years and are struggling or wondering if you can accept what has happened, I would love to speak with you. I am researching the concept of ‘acceptance’ within the context of a serious health issue by collecting people’s experiences with it. Click here to find out more. And in exchange, I offer you a free 1 hour coaching session.

 

Pass it forward

 

Although I wrote this blog in the context of living with a serious health issue, the ideas contained within are applicable to everyone. If you think someone you know would benefit from reading this blog, or you just want to spread the ideas, click on the icons to share.

© Copyright Barbara Babcock 2018

What health coaching is like for people with serious health issues

What health coaching is like for people with serious health issues

A former client, Wendy H., has graciously shared her health coaching journey to give you a taster of what it is like and how it can support someone to live well with the impact of the health issue they have. Wendy starts her story before we started working together, sharing with you the serious health issue she lives with and everything she tried to help herself before trying health coaching. She then shares what health coaching was like for her. 

I made very little changes to what Wendy wrote. I added in a word here and there and the titles, and moved some sentences. I also drew the pictures. At the end of this article I provide a link to the questions referred to by Wendy. They will help you think about your own situation and what you want to be different. There is also the opportunity to try coaching for yourself for free.

 

Return to wellness: My health coaching experience

 

When my life changed forever

 

It was 7 years ago – in another life – since I was diagnosed with Transverse Myelitis (TM), resulting in a weakened left leg with inevitable muscle wasting, dropped foot and a multitude of other symptoms associated with the condition such as bladder and bowel issues and fatigue.

I had always been sporty and active so over the past few years my rehabilitative journey took on a multitude of self-help strategies, importantly, finding out as much as I could about the condition.  I read books on neuroplasticity, brain training and mindfulness. I joined exercise programmes, the gym, saw a sports physiotherapist, neuro physiotherapist, trained how to do Nordic walking, which led to me taking up hippotherapy (horse therapy, or simply put, horse riding).

I have been measured for orthotic insoles and used a Functional Electrical Stimulation device (FES). I even went to acupuncture for weeks. I was on the verge of sinking into depression so was referred to a clinical psychologist, resulting in a short course of anti-depressants.

 

The irony….

 

Even after all this determination and sheer will power to get back to my previous life, it wasn’t really working.  I did a reasonable job at maintaining my physical strength. However, it seemed I was fighting a losing battle and began to feel ‘exercised out’.  I would put pressure on myself to exercise and scold myself if I didn’t.

I’d watch people running and walking in the street or on TV.  I found myself analysing their gait. How do they do this simple activity…. automatically?

I obsessed about how TM had affected me, was consumed with frustration, anger, loss, depression.

Finally, a few months ago I realized I had become STUCK.

After all this effort.

I was STUCK.

Everything became a mammoth task or a hassle. I’d stopped exercising. I became anxious and tearful.  I lost motivation, interest and confidence in almost everything. I couldn’t move on or come to terms with or adjust to how my world was now.

I still fretted about my past life. I was still angry and frustrated. This mountain was in front of me and I didn’t have the energy to climb it again.

Then it occurred to me – I had been focussing mostly on my physical state and been neglecting my mental health state. I really hadn’t learned how to adjust, accept or come to terms with this long-term medical condition Transverse Myelitis.

Picture of a person with a serious health issue stuck between their old life and the mountain (i.e. figuring out their new life)

Wishing for your old life but starting a new one feels like a large mountain to climb

 

You've done everything you can to live well w/ your #serioushealthissue #seriousinjury #chronicillness but you’re still stuck. Imagine this. A magic wand is waved as you sleep. In the morning, you still have the health issue, but… tell a friend

 

The turning point

 

At this time, an article in a newsletter from the Transverse Myelitis Society reminded members about a bursary to provide health coaching, guided by Barbara Babcock. I did have some apprehension and wondered whether this would be another fruitless journey.

However, having plucked up the courage to contact Barbara, she reassured me about the process and that we would have telephone contact at times to suit us both.  She also provided lots of preparatory articles and questions to think about prior to our first communication, so I felt somewhat relieved and prepared.

 

Health coaching journey – One of enlightenment, empowerment and self-awareness

 

Over the weeks that followed, my health coaching journey became one of enlightenment, empowerment and self-awareness.  I was amazed with how comfortable it was talking to Barbara on the phone and I soon realized that she didn’t put pressure on me to fulfil her agenda.

This was totally me guiding the script and pouring out my anxieties, stresses, frustration and anger. And importantly, we tackled the obstacles in my way, with a much more energetic and positive attitude.

I learned how to recognise my feelings within my body, not just the negatives, but the positives too.  It was frightening that I rarely felt these ‘positives’ because I had focussed on the negatives for so long.  It took practice, but I now consciously recognise when something feels ‘good’ and that this is the ‘anchor’ I needed.

I became more attuned to acknowledging anger and anxiety and importantly, how to manage, process and take control.  With Barbara’s guidance and simple strategies, I learned how to ‘feel’ where in my body the emotion was and what thoughts arose.

By simply giving the emotion a name and spending time with it, enabled me to process these thoughts and feelings.  This may sound daunting, but the nature of talking about your underlying feelings, in this safe environment, or writing them down was incredibly powerful.

Picture of a person writing about their feelings which is a powerful thing to do

The power of writing about your feelings.

 

The nature of talking about your underlying feelings in this safe environment of #health #coaching, or writing them down, was incredibly powerful. #serioushealthissue #chronicillness #spinalcordinjury #TransverseMyelitis tell a friend

 

 

Health coaching empowered me to focus on what I can do

 

My health coaching journey has now ended, but my journey to wellness and normality continues.  This is my new philosophy.

If you feel you have a mountain to climb or feel ‘stuck’ and have determination and the willpower to want to take your first steps, I would strongly recommend health coaching.

Be prepared to be open and honest and be aware that emotions may become overwhelming and distressful. And be prepared to work at it.

Barbara will pose unexpected questions and prompt when you are off your guard. If you expect Barbara to tell you what to do and how to do it, you will realise that this is not how it works and you will not reap the benefits.

I am learning to focus on what I can do now, and although I still have a mountain to climb, I can tackle it in smaller chunks.  I am more positive and less fatalistic. I am able to recognise anger. I am now able to move on. I am managing fatigue. I have resumed physical activities and registered for a one-mile open water swim.  I no longer feel ‘stuck’.

Wendy H, York

 

Picture of a person having found her path to wellness and a new normality because of health coaching

Finding your own path towards wellness and your new normality

 

What’s it like for you?

 

In what ways did Wendy’s story mirror your own or someone you know? How do you think health coaching could help you? Share your thoughts in the comments below.

If you are living with a serious health issue, which may be a serious illness or injury or chronic illness, or are caring for someone who is, and would like support to return to a sense of wellness, have a look at how we can work together and get in touch for a free no obligation consultation.

You can also download the questions I sent to Wendy for her to think about ahead of our first session via this blog post.

 

Help with research on acceptance

 

If you or a loved one experienced a serious health issue in the past 2 years and are struggling or wondering if you can accept what has happened, I would love to speak with you. I am researching the concept of ‘acceptance’ within the context of a serious health issue by collecting people’s experiences with it. Click here to find out more. And in exchange, I offer you a free 1 hour coaching session.

 

Pass it forward

 

Although this blog is written in the context of living with a serious health issue, the ideas contained within are applicable to everyone. If you think someone you know would benefit from reading this blog, or you just want to spread the ideas, click on the icons to share.

© Copyright Barbara Babcock 2018

 

My story of coping with a serious rare illness Transverse Myelitis #RareDiseaseDay

My story of coping with a serious rare illness Transverse Myelitis #RareDiseaseDay

For Rare Disease Day, I am sharing my story of coping with a serious rare illness called Transverse Myelitis, which I got in October 2008. I realised I never shared my personal story with serious illness in any detail and given Transverse Myelitis is rare, it feels appropriate to share it today. I originally wrote this article in 2016 for the Transverse Myelitis Association in the USA and it first appeared here. I have made some changes to the original article.

 

About 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. So it is not an illness you ‘catch’ from anything or anyone; it’s not contagious or genetic.

Transverse Myelitis 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.

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 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.

Awareness ribbon for Transverse Myelitis

 

My story of Transverse Myelitis – The onset

 

Today is 13 October 2016 (when I originally wrote this article), 8 years to the day I was advised by my GP to go to A&E (Accident and Emergency) as soon as possible. I was feeling strong pins and needles, and shooting, stabbing pain all throughout the saddle area. 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 was due to deliver a presentation that evening, but cancelled it as going to A&E took priority.

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.) They wanted to admit me. I was meant to fly to the USA in three days for my sister’s wedding, so I wanted to return home. They strongly advised me to follow their advice. I did.

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.

With each passing day, the pins and needles and stabbing and shooting pain progressed down my body. 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.

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. 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.

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 disorder and rare.

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 earlier in the summer and I had been actively looking for work.

 

After hospital – Learning to live with Transverse Myelitis

 

I returned home from hospital after 2 weeks. 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.

Picture of a person with fatigue sleeping on a sofa

When fatigue is present, resting is important

 

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 and my badly shaking chin would 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 temporary distraction from my health issues. And I usually had an interesting piece of info to share with my husband about my family at the end of the day.

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.

 

Logo for the Transverse Myelitis Society

 

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.

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 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.

When a #seriousillness or #seriousinjury disrupts your life, people often ask how do you go on. The option of doing nothing doesn’t feel like a great choice to make. So you just get on with your life the best you can. tell a friend

 

Nine months later, I still had sensory disturbance, neuropathic pain, some fatigue, and didn’t have full sensory awareness in my hands. 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 to use 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.

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 in the UK, 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 have stepped back from the Chair role and the TM Society’s management committee, I am still involved as a volunteer. Separately, I am helping a neurologist design a research project on TM and we hope it will get the necessary funding. I have studied Acceptance Commitment Therapy because I wanted to learn different approaches to helping people through the process of acceptance of difficult situations. I’ve also been studying Systemic Constellations to help people resolve issues relating to family dynamics and illness. 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 am grateful for the opportunity.

So I think back to 9 years ago and to the day I felt like something finished when I was told my prognosis. I notice how my body is now. The constant pins and needles in my hands and hence reduced sensory awareness. How anything I touch feels like sandpaper, and 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. The buzzing I feel in my spinal cord whenever I bend my head forward. These symptoms are all invisible and are manageable. I use the symptoms as a reminder to look after myself and live my life well.

 

What we think is broken can actually nurture beauty

 

When living with a #serioushealthissue #chronicillness our bodies may have been wounded and at times they may feel broken. But beauty can spring forth from the brokenness #KintsugiBowls #postraumaticgrowth tell a friend

 

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 serious health issue, including our children and families: may we nurture and grow the beauty that we still hold within us.

Picture of a Japanese kintsugi bowl and how life with a serious health issue can be like that

 

What’s it like for you?

 

What has your experience with a serious illness or injury been like? What have you done differently in your life as a result? What would you like to do differently? Share your story in the comments below.

If you are living with a chronic illness or the after effects of a serious illness or injury, or are caring for someone who is, and you would like support to rebuild and renew your life, have a look at how we can work together and get in touch for a free no obligation consultation.

 

Help with research on acceptance

 

If you or a loved one experienced a serious health issue in the past 2 years and are struggling or wondering if you can accept what has happened, I would love to speak with you. I am researching the concept of ‘acceptance’ within the context of a serious health issue by collecting people’s experiences with it. Click here to find out more. In exchange, I offer you a free 1 hour coaching session.

 

Pass it forward

 

Although I wrote this blog in the context of living with a serious health issue, the ideas contained within are often applicable to everyone. If you think someone you know would benefit from reading this blog, or you just want to spread the ideas, click on the icons to share.

© Copyright Barbara Babcock 2018

 

10 tips to manage scanxiety (scan anxiety) during medical procedures

10 tips to manage scanxiety (scan anxiety) during medical procedures

You may need to manage scanxiety – scan anxiety – when living with illness every few months, once a year or on the occasion when something isn’t right and you need to get it checked out. This type of anxiety can also apply to other medical investigative tests.

It’s not fun, I experienced it the other week. And I’ve experienced it many times in the past when I’ve had MRIs, other unpleasant investigative tests, and as a carer. I learned it can be an up and down process – you may get some good news, then some not-so-good news, then some reassurance, and then you wait days/weeks/months for the final verdict.

Feeling a degree of anxiety is normal because as you go through the process of scans, procedures, etc, you don’t know what the medical professionals will find and what it may mean. If you feel the anxiety is getting in the way – how often you think about it, your sleep, or getting through the procedure/scan/treatment itself for example – then here are 10 ideas on how to manage it.

I largely refer to managing the anxiety during the scan or procedure but some of the ideas are also applicable before and after it. When I talk about anxiety in this context, I am not referring to a clinical diagnosis of anxiety. If you have a diagnosis of anxiety, you may find the ideas mentioned here useful.

 

My experience of scanxiety

 

In my case, the scan came about because something wasn’t quite right for a few months – breast pain. Given it was recurring and it felt like something was in the way inside my breast but I couldn’t feel a lump, I saw the GP. The GP referred me for a scan and 11 days later I was sitting in my local hospital.

I saw the consultant. She did a manual exam and couldn’t find any lumps. I felt relief. She sent me for a scan.

I got changed and waited for the scan.

I had the mammogram. It was uncomfortable but went ok.

I sat in the scan seating area. They asked me to come back to redo some of the mammogram scans.

I could feel the anxiety rise a notch.

Afterwards, they came back and said the consultant wanted an ultrasound.

I felt the anxiety increasing.

Whilst doing the ultrasound, the consultant said they found something.

But it was in the other breast that had been ok.

When I get news like that, I have a ‘deer in the headlights’ moment. I can feel the anxiety spike high, and my eyes open wide. I feel very scared in those moments.

Picture of a person with anxiety after receiving a diagnosis and needing a medical procedure

When you get a diagnosis or an unpleasant medical update and feel anxiety

The consultant said it was a lump but one that was well-defined – a fibroadenoma.

I said to her, “I should be asking questions but I can’t. My mind had gone blank.” The anxiety was in control.

She said it was most likely not cancerous, but they wanted to check it out further by doing a biopsy, they could do that at another time but could also do it now. I don’t remember actually saying yes, I may have, but what I was saying and tone of voice indicated yes. She proceeded to prepare for the biopsy.

I was full of nervous chatter during it describing what had happened when I had a lumbar puncture when they had to get a bigger needle so this shouldn’t be so bad. That was a way of me calming myself by telling myself and them I had been through worse.

I was noticing how tense my muscles were and I would remind myself to relax and breathe. At the end the consultant said I had been very brave. I didn’t feel brave. I berated myself silently saying to myself the doctor shouldn’t have to say that to me. Notice that should, because we are coming back to it. I reminded myself to take from the consultant’s words what she was giving – comfort. I then joked with the nurse asking if I could get a gold star.

The scans and procedures finished and it was back to the main waiting area to wait to see the consultant. I suddenly felt emotional. It was a familiar feeling. After a round of being poked and prodded by medical professionals I can feel emotional. Also, I’ve been having tests for other things recently and have a treatment coming up so it just felt like something else to deal with. I just wanted to curl up and be looked after by someone else.

I saw the consultant, who said the lump is usually not an issue and if all is ok, they would leave it where it is. But they would let me know the results of the biopsy in the next week. I referred to the anxiety I was feeling and the doctor said they wanted to be thorough.

And that was it I thought and even said, ‘It’s a balance to maintain between the medical professionals being thorough and the anxiety the patient may be feeling.’ That sounds clumsy but that was the key learning for me.

There’s a balance to maintain between the medical professionals being thorough and the #anxiety you may be feeling during the #medicalprocedure or #scan tell a friend

 

The doctors want to do their best so they will be thorough.

 

Although modern medicine can do so many great and amazing things, it is not always a precise science. So expect the unexpected to happen and if it doesn’t, that’s great.

 

The patient manages their scanxiety as best they can so the doctors can do their scans, tests, etc.

 

Learning and practicing techniques to manage our anxiety is in our control. Given we can control our breath, mind and muscles, those are great starting points to manage any anxiety we may experience.

 

Picture of a scale with a doctor and patient sitting on it and maintaining a balance

The doctor and patient maintaining the balance between being thorough and managing anxiety

 

So here is what I found to keep scanxiety from taking over

 

  1. Read the information they send you in advance so you know what will happen on the day. If you have questions before the appointment, call the hospital.

 

  1. Bring something to do during the times you have to wait like a book or magazine to read, paper to draw or write on, your iPad or phone to watch tv or listen to music, your knitting, whatever. This is a healthy distraction which helps to keep the anxiety at bay.

 

  1. If you will be there for a while, bring food and drink provided you can eat/drink during the procedure you’re having. Sometimes it’s hard to get away as when you are waiting, you don’t always know when you will be called in to see the consultant or have a scan/procedure. So best not to sit there hungry or thirsty.

 

  1. Be prepared with these generic questions in case they want to do another procedure or suggest a new treatment. They will help you to collect the information you need to make an informed decision. You may not have to use them but being prepared can be a comfort.

 

  • What is this procedure/treatment/drug meant to achieve?
  • What are my options? (are there other options for example)
  • What are the specific benefits and potential harm to me? (pros and cons)
  • What happens if I do nothing?
  • What should I watch out for? (after treatment, the procedure or starting new medication, i.e. side effects, having a relapse, etc.)
  • Are there any questions I haven’t asked that other patients typically ask?
  • Who can I contact if I have a follow-up question?

 

(Questions 2, 3, 4 were obtained from this excellent article.)

 

Picture of questions to ask so you can make informed decisions about your medical care

Key questions to ask so you can get the info you need to make informed decisions about your medical care

 

  1. Find a release for your anxiety during the procedure that doesn’t get in the way of completing it – Chattering and joking, when it’s possible, are mine. If that, breathing, counting, or something else helps you to be brave, go for it. I have in the past told medical professionals that I would probably chat or use humour to calm my nerves and get through the procedure. They were never surprised. They’ve seen it all before.

 

  1. Keep yourself in the present moment – Focusing on your breath and breathing is a healthy distraction from wondering how the test is going, what are they finding, etc. However, if breathing has an impact on the procedure (there are procedures where you may have to hold your breath or breathe a certain way), then focus on what is in front of you – what you see, what you are holding on to, etc. Or ask if you can wear headphones during the procedure as you may be able to listen to a podcast or your favourite music.

 

  1. Have a mental happy place you can take yourself to – favourite holiday spot, a place you’ve always wanted to travel to, imaginary dream home, you score the winning goal in the World Cup final (whenever England get there), you achieve something great you’ve always wanted to, etc. This is a day dream that makes you feel happy.

 

  1. Have pen and paper with you to write down how you are feeling or use your phone to type it out while you are waiting. That is how this blog post was born.

 

  1. If thoughts are being pesky like annoying internet pop-up windows, imagine crumpling them up and throwing them in the medical waste bin. Or being taken away by a healthcare professional leaving the room. Or imagine putting the thought on a cloud and watching a strong wind blow it away. And if you find your self-talk containing a lot of ‘I should have…’, stop and remind yourself to be gentle with yourself.

 

  1. If you can, take someone with you to the procedure/treatment. Having someone else to talk to whilst you are waiting for procedures and scans can be a good distraction, enjoyable, and calming. If that is not possible, call or visit a good friend or family member afterwards to talk about it. I dropped in on a friend of mine on the way home (unannounced) and she fed me tasty vegetarian lentils and chocolate cake. Her company and food were very restorative!

 

Here are 10 ways to keep #scanxiety – scan anxiety – at bay during a #medicalprocedure or #scan tell a friend

 

Picture of 10 ways to manage scanxiety (scan anxiety)

10 ways to manage scanxiety (scan anxiety)

 

These 10 tips are a starting point. Keep seeking to learn new techniques and approaches so you have a toolbox of them. That way, if you can’t use one during a procedure or scan, you can use another one.

 

What’s it like for you?

 

What have you found to help you keep scanxiety at bay during procedures, scans and doctor appointment? Share your thoughts in the comments below as we may all learn something new to add to our toolbox.

If you are living with a chronic illness or the after effects of a serious illness, or are caring for someone who is and would like support to manage anxiety and have good relationships with healthcare professionals, have a look at how we can work together and get in touch for a free no obligation consultation.

 

Help with research on acceptance

 

If you or a loved one experienced a serious health issue in the past 2 years and are struggling or wondering if you can accept what has happened, I would love to speak with you. I am researching the concept of ‘acceptance’ within the context of a serious health issue by collecting people’s experiences with it. Click here to find out more. And in exchange, I offer you a free 1 hour coaching session.

 

Pass it forward

 

Although this blog is written in the context of living with a serious health issue, the ideas contained within are applicable to everyone. If you think someone you know would benefit from reading this blog, or you just want to spread the ideas, click on the icons to share.

© Copyright Barbara Babcock 2018

 

Restoring purpose and meaning in your life when living with a limiting illness

Restoring purpose and meaning in your life when living with a limiting illness

Restoring purpose and meaning in your life when living with a limiting illness or injury can feel nigh on impossible at times. Particularly if the illness or injury means your symptoms fluctuate unpredictably, or you don’t get support you need, and/or you have to spend a large amount of your time resting and indoors on your own.

You may feel like so much has been taken from you – your independence; social life, job/career; financial stability; ability to do favourite activities; enjoyment from those activities; roles you value in life like being a parent, son, daughter, sibling, friend. So of course you may feel that there isn’t purpose and meaning in your life.

Picture of person sad because purpose and meaning are hiding from their life

When purpose and meaning are hiding from your life

 

And yet, it is so important to have purpose and meaning. It is healthy food for your psychological and emotional health, your self-esteem and sense of self-worth. I say this based on previous clients reporting that when they have resolved an issue, or found a new way to approach situations they previously found stressful or co-exist more peacefully with their illness, they felt better in themselves and that their life was more than their illness.

When living with a #serioushealthissue #chronicillness #seriousillness #seriousinjury it’s important to have purpose & meaning in your life. It's the food for your psychological & emotional health, your self-esteem &… tell a friend

 

So how do you restore purpose and meaning in your life in this situation? Using one person’s story which was recently available on the internet, I’m going to share key elements of it and how that can help in restoring purpose and meaning.

In some ways, I feel uncomfortable writing about someone I have never met. Yet his story resonated with me. It feels affirming. That even in circumstances you would never have chosen, it is possible to restore purpose and meaning. I’m not saying it’s an easy thing to do, something like this is a journey. Just that it’s possible. It also reminded me of the book Man’s Search for Meaning by Victor Frankl.

My thinking is you don’t get a how-to-have-a-good-life manual when you get a life-changing serious illness or injury. By sharing what I think this person is doing, my intentions are to write part of the manual in a sense and hopefully help others.

 

The story

 

Michael van Huffel has Myalgic Encephalopathy/Chronic Fatigue Syndrome (ME/CFS). ME is also referred to as Myalgic Encephalomyelitis. It is a neuroimmune condition which affects every person differently and it can be very debilitating.

Michael’s story was profiled by the BBC. Here is a summary of it, which was taken from that article and here and here.

Michael had to stop working in his career as an artist, animator, Creative Director and musician, has expensive medical bills, and lives in in a one room apartment. Due to his illness, he doesn’t often get to go outside and socialising primarily takes place online.

He was given a phone on a family plan. A friend suggested they do a photo-a-day project. He started to do that using what is available to him – scraps of things, flowers, a jar, water. His range for collecting these items isn’t far, they are found close to his apartment and on short walks.

Michael takes photos, something which he can do, and makes the subject of them appear like something which they aren’t. The photos can represent the emotional state he’s in when he is taking them. Or sometimes he just takes a picture of something because he wants to. He takes the photos at night when he tends to feel better.

He mentions about working within the restrictions he lives with, how creating art allows him to feel productive, and how that is giving him hope and a purpose.

 

A guide to restoring purpose and meaning in your life 

 

These are the key elements I identified in Michael’s story which help restore purpose and meaning in your life. Anything mentioned here about him is factual and taken from the sources referred to above. It’s not the whole picture of the man or his life. Where I don’t know something in relation to his story, you will see I use words like ‘possibly’, ‘probably’ or ‘suspect’ for example.

Along with the key elements, I offer some questions or pointers from a psychological and practical perspective with the aim of helping you apply these to your life. Anything in bold are the key points. They are in no particular order.

I am not saying that the following is any kind of cure for your illness or injury. It is also not a “tick box 1-2-3, do this, do that and you are sorted”. Nothing like that at all. Restoring purpose and meaning in your life is a journey, and like many journeys, it can take time.

  • Having support. A family member gave him a phone. A friend suggested the photo-a-day project. Sometimes the stimulus to make a change can come from external sources. It can also come from within you. Asking for and accepting support and help can be a hard thing to do. You can feel guilty, dependant, etc. There are reasons for that which I wrote about here. Sometimes help, when timely and appropriately given, can be the gateway to really good things for you and the person supporting you.

 

  • Have a goal – a photo-a-day, which was probably reckoned as achievable. Smalls goals are achievable and key when energy levels fluctuate and are limited. Small goals can also build on one another.

 

Picture of KISS keep your goal small and simple

Keep your goal small and simple

 

  • Have the resources to help achieve that goal or you can find them: the phone, support regarding the phone and for the project, finding the subject matter for the photos.

 

  • Michael is using what items he can when he can get them for his photos. This is about striving towards the goal. It requires him to pay attention to his immediate surroundings, which helps one to live in the moment. It requires thought and using one’s brain – how can I use this item? A goal and striving towards it helps to return purpose to your life.

 

  • He is using existing skills – art, creativity – which I suspect he values and enjoys using. What existing skills do you have which you enjoy using? But you don’t have to use existing skills. What you choose may require you to develop new skills and that’s great too.

 

  • You may have to adapt how you use your skills – Michael now uses his creative and artistic skills via photography. This adaptation takes into account what he can physically do now. If you can’t use your skills in the way you used to, in what other ways can you channel them? A willingness to adapt is key. For some this can understandably be a difficult process. When you adapt various aspects of your life, particularly when you would not have chosen to do so, you are also acknowledging that an unwanted change has taken place. So I also advise a large dose of self-compassion and tap into available support as you do this. This can help you manage and reduce the ‘negative fight’ and its impact which can occur as you adapt.

 

Picture of person drinking a large does of self-compassion to help them adapt to illness or injury

Take a large does of self-compassion as you learn to adapt

 

  • Check the flexibility of your chosen activity – Michael’s chosen activity of photography is flexible. You can do it nearly anytime anywhere. Choosing an activity which is flexible in this way gives you more opportunity to indulge in it.

 

  • The chosen activity involves creating and learning and results in achieving something, a photo. But not all activities will involve creating a tangible thing and that’s fine. You can also get a sense of achievement by finishing a book or an online course for example. It’s finding an activity that enables you to learn and achieve something you enjoy and value.

 

  • Michael referred to his photos as being a reflection of how he was feeling when he took it. That is consciously connecting with one’s emotions and feelings. Being in touch with them, even the unpleasant ones, is a psychologically healthy thing to do. I explain more about that and how to do that here. IMPORTANT: If the emotions and feelings you experience are unexpected, very strong and feel destabilising, happen a lot, and they feel uncontrollable to the point you cannot participate in the various aspects of your life, please speak to your doctor. This is a sign that another form of help is needed (than what I am qualified to provide). A counsellor/therapist may be best placed to help you and your doctor can advise you.

 

  • He takes the photos at a point in the day when he feels good enough to do so. And he is regularly doing this based on the photos in his Instagram feed. You define what ‘regularly’ means for you.

 

  • He acknowledges the various restrictions he lives with and is finding a way to work within them rather than ignoring or fighting them. When you do this, it’s not about you saying ‘yes’ to or agreeing with the restrictions you live with. Paradoxically, you end up restoring your sense of control and transcending the constraints.

 

Here are some key pointers on restoring purpose and meaning in your life after the onset of a #serioushealthissue #chronicillness #seriousillness #seriousinjury tell a friend

 

What all of this does is make room for other things you value and enjoy in your life in addition to the illness or injury. Your life becomes not just about the illness or injury.

Your focus turns towards these important things in your life, so you end up focusing less on the illness or injury. And while you do that, your sense of feeling productive and having a purpose is fed. This brings meaning to your life. Your self-esteem and sense of self-worth increases. This in turn helps to generates the resources within you to deal with the impact of your illness or injury.

Pie chart showing that when you have a restored purpose and meaning to your life less time is focused on the illness or injury

Restore purpose and meaning to your life through heart and soul energy giving projects, activities and people

 

What’s it like for you?

 

If you are looking to restore purpose and meaning in your life, which of the points above do you feel you can do? If you have started on this journey, what has worked or not for you? Share your thoughts in the comments below.

If you are living with a serious illness or injury, and would like support on restoring purpose and meaning in your life, have a look at how we can work together and get in touch for a free no obligation consultation.

I am offering a 20% discount on coaching packages between now and 31st January 2018. Quote the code #XMAS17NY18.

 

Help with research on acceptance

 

If you or a loved one experienced a serious health issue in the past 2 years and are struggling or wondering if you can accept what has happened, I would love to speak with you. I am researching the concept of ‘acceptance’ within the context of a serious health issue by collecting people’s experiences with it. Click here to find out more. And in exchange, I offer you a free 1 hour coaching session.

 

Pass it forward

 

Although I wrote this blog in the context of living with a serious health issue, the ideas contained within are applicable to everyone. If you think someone you know would benefit from reading this blog, or you just want to spread the ideas, click on the icons to share.

© Copyright Barbara Babcock 2018

 

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