When your recovery is uncertain, it can be a difficult time.
Scary even because you don’t know how much functionality you’ll get back and
how long that will take. That might make for uncomfortable reading.
I am mentioning this up front to acknowledge your or your
loved one’s reality and that it’s normal to feel uncomfortable about it, even
scared. I know, I’ve been there myself. It can be an anxiety-ridden place. But
there is hope.
It may feel like you have no control, but you do have some. It’s important to recognise that. And then exercise the control you do have, however much that is. I’ve come up with ten things you can do when your recovery is uncertain.
This blog is actually
for a friend who is in this position right now
I’ll call him Michael. And I have his permission to use him as a case study. Michael sustained a serious spinal cord injury a few months ago. High up the spinal cord as well so his whole body is affected. Initially he was paralysed but regained functioning and can walk. The doctor said he is very lucky.
Michael had an operation so the disk doesn’t impinge on the
spinal cord. It is to prevent becoming Michael becoming paralysed from the neck
down again due to the damaged disc if he were to ever have another accident.
As Michael can walk the impact of his spinal cord injury is invisible. The most difficult symptoms he has are fatigue and chronic neuropathic pain. When we talked about me using his situation as a case study for a blog, I asked him what is the one question he would like me to answer. He asked,
‘How long do I have
to wait until I recover and go back to the way I was?’
That’s a big question. The doctor’s prognosis figures into this. What did the doctor say to Michael regarding his recovery?
Recovery after a spinal cord injury, many neurological
illnesses, and other illnesses such as cancer, are not straightforward. Also,
you and your body hardly go back to way you were before the illness or injury.
You can be anywhere on this continuum of recovery.
No recovery and you live with the impact whatever that is. This may include permanent disability where a lot of functionality is affected.
Some recovery with residual symptoms that impact how you live your life to a moderate degree. It may include a moderate degree of permanent disability.
Good recovery with minor residual symptoms that do not have a great impact on how you live your life
Complete recovery
And the recovery process can take time. For example, with the neurological illness Transverse Myelitis, the neurologists speak of a 2 year window of recovery. With some conditions like Multiple Sclerosis, you will have a periods of recovery after a flare-ups or relapses (depending on the variant of MS you have).
Michael is very aware of this and had this discussion with his doctor, so this blog isn’t the first time he is hearing this. So I move onto the first thing to do when your recovery is uncertain. These 10 things you can do are applicable to anyone in this situation. Some of them may not be easy to do, but they are important. And they aren’t an exhaustive list.
1. Learn to live with the uncertainty
Learning to live with the uncertainty of not knowing how long recovery will take and the degree to which your symptoms and issues will improve is important. When you can learn to live well enough with the uncertainty, you then free up your energy to focus on your rehabilitation and things that will give you meaning and joy. This can help the recovery process.
Linked to this is the relationship you have with your illness or injury. If it’s a fraught relationship full of fighting and anger, it can be harder to live with the uncertainty. I’ve seen people end up fighting it and as a consequence they end up not looking after themselves physically or emotionally very well. This is stress inducing which can exacerbate symptoms.
2. Take control of what you can
This is your physiotherapy (or exercise if you are not having physiotherapy), your medication and appointments, your diet, your mental health, your relationships, your return to work if you are working or volunteering, your hobbies and leisure time, finances, life purpose and values, and your physical environment.
This is all in your remit to control and influence, making any adaptations and changes to help you live well with the impact of your illness or injury. The next point suggests how you can take control.
3. Develop a rehabilitation plan when your recovery is uncertain
These days I don’t often hear of people leaving hospital with a care or rehabilitation plan. But there is nothing stopping you from creating your own plan.
Developing your own plan could be a blog in itself so I’m
going to quickly describe how to do this. For each category listed in point 2
ask yourself these questions for a start:
What do I need to do to do my physiotherapy for
example, or manage my medication and appointments, diet, etc.? What changes do
I need to make?
What are my goals for my physiotherapy,
returning to work, etc. Ensure these goals are concrete, i.e. based on
behaviours and have timescales attached to them.
What questions do I have? Is there a person I
know who has been through this or a charity who can help?
What specifically will I need support with? For
example, you may need someone to help you with your physiotherapy.
As part of this, it can be useful to keep a diary of your symptoms (particularly if they fluctuate), progress you are making, when you plateau or have an exacerbation of symptoms, etc. This can help you identify:
Patterns and themes in your recovery such as what may trigger an exacerbation of symptoms. This can help you manage the impact of the illness or injury.
Questions you have for your doctor and to prepare for your appointments.
Any improvements you have made over the longer term which can be motivating to look at from time to time.
Given recovery from serious health issues are rarely
straightforward, things won’t go to plan. Adopting a learning mindset will make
navigating this unknown terrain a lot easier and lessen the negative energy
spent when things are not going well.
Michael said it best, ‘Live and learn.’ He overdid it in the
garden the other day and realised it the next day. He now knows his current
limits for gardening activity.
So when you do something for the first time, or you are
increasing your activity levels, or something doesn’t go well, ask yourself:
What did I learn from this?
What do I need to do, think or feel differently
next time (if anything)?
Make a note of it if you need to.
5. Develop your willingness muscle to adapt
Develop your willingness to adapt and ask for help. Change
can sometimes be hard. Particularly in the context of an illness or injury
where things may be harder to do, take longer to do, and/or you’ve lost valued
levels of functioning and activities. This can include letting go of
pre-illness or injury expectations of yourself and developing new ones.
I am not saying you squash down any sadness associated with
this, not at all. Do acknowledge that because that is a psychologically healthy
thing to do. You can do this without unpacking and living there.
Developing your willingness muscle to adapt and change, gives you more options. When you have options, you have choice and more control. This can also help reduce black and white thinking where you only have either this option or that option (and neither may be what you want).
6. Ask for and say yes to help
Asking for help is important as you may want help but people may not be able to spot that, or they worry about imposing.
Also, asking for and accepting help does not mean you are
weak or a burden. Many times, the person has offered their help and is only too
happy to help you. You get to where you want to be faster and helping you makes
them feel good too. Win-win.
Sometimes though, as I mentioned at the end of this blog, you want to say no to help because you want to check what you can do now, if there has been some recovery. That is fine. If someone has offered to help you and you say no, let them know why.
7. It’s especially important to talk to your family when your recovery is uncertain
This is REALLY IMPORTANT. Don’t assume that they don’t want
to be bothered. Don’t assume they know what it is like for you. Ask them what
they want to know and the questions they have.
If you keep things bottled up out of fear of upsetting them
or making things more difficult for them, you inadvertently create the
conditions for people to come up with their own stories of what is going on
with you. And they may not be correct.
Those in a caring or supporting role are also affected by
what has happened to you. They are affected differently, but the impact can be
just as great.
Acknowledge what they have had to do. Chances are they have had to take on some of the stuff you did. Listen to them about how they are affected. Put feelings of guilt to one side and worries about not being able to ‘repay’ your spouse/partner/children/parents. Recognition in the form of a genuine thank you, a hug, a kiss, your time and attention is the most valuable ‘payment’.
Getting your children involved
Children often want to help so if there is some way they can
get involved in helping you with your physiotherapy for example, doing household
chores, or even in helping you set your rehabilitation goals, that can go very
far in helping the children know they matter. It can also help build their
confidence levels if they take on new chores and are recognised for making a
valuable contribution.
Regarding your children helping to set your rehabilitation
goals, ask them what they would like to be able to do with you and make a plan
as to what you need to do together to do that activity. Realising you may need
to make adaptations to how you do the activity and even the type of activities
you do together.
It is usually in these stressful times where pre-existing and sometimes unhelpful family dynamics can get in the way and cause issues. When the pre-existing dynamics come into play, you are both doing something that contributes to this dynamic so this isn’t about blaming one or the other person for what they’ve done or not done. Hence why I am emphasising the importance of talking with your family when your recovery is uncertain.
8. Limit comparison to others and your pre-illness/injured self
Comparison to others and your pre-illness/injured self can be a recipe for keeping yourself stuck. It is a natural thing to do. Just be mindful of it, how often you do it and how any comparison is making you feel.
I recommend you compare yourself to yesterday. That way your comparison is more fair and realistic.
9. Hold your wants lightly
When your recovery is uncertain and you’ve been dealing with a lot of unwanted changed, of course you may want to recover 100%. You want to be your pre-illness/injured self again. You want less pain, fatigue or whatever symptoms you are experiencing.
That is all a given.
Just be mindful to hold those wants lightly. If you fiercely cling to them, you can inadvertently limit your ability to adapt. You can end up continuing to fight your situation and remain stuck. Chances are that is not what you want for yourself.
10. Maintain a well-tuned sense of humour when your recovery is uncertain
There are times we laugh at our situation, but it is more of a gallows laugh, laughing at our misfortune. We do that from time to time but that is not what I am recommending here. Because gallows humour can be a subtle discount of ourselves and our situation.
I am talking about a well-tuned sense of humour. Sometimes
with people you know well you or they may find the humorous side to an an
aspect of your condition where it is truly funny to all those involved
including you.
Also, seek to laugh just for a laugh. It may be banter with
family, friends or colleagues. It may reading a book or watching a movie. It
may be following a comedian or funny social media account. (I recommend
@TheMERL and the libraries and museums on Twitter for that.)
I recommend a belly laugh a day because it brings joy into
your life. Put that in your rehabilitation plan.
When you look at all of the above, there is actually quite a bit you can do when your recovery is uncertain.
What’s it like for you?
What on the list above most resonates with you? What isn’t on this list that you think could be there? Share your thoughts or questions in the comments below or alternatively email them to me (contact form in sidebar).
If you are living with a serious health issue or are caring for someone who is, and would like support in dealing with any of the issues mentioned in this blog, then have a look at how we can work together and get in touch for a free no obligation consultation.
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The impact of family on health and illness and vice versa
has long been an interest of mine. I was
reminded of the depth of this impact when working with a client last year. He
has kindly given me permission to use one of our sessions as a case study to
share what the impact can be like and what can help.
You are aware of the impact of family on health and illness
given you have most likely lived through or are living with a serious health
issue, whether yours or a loved one. There’s a practical, emotional, social,
and financial impact, and the impact on family relationships. And all this can
have a physical impact on you.
The impact of family on health and illness or injury can be wide and varied and I can write a lot about it. But in this blog I am focusing on how what we learn in our family of origin and how the family functions can impact our health.
Anthony’s dilemma
The client, Anthony (not his real name), talked about his health issues. He had a badly broken leg which was still healing, back issues, and was ‘living on borrowed energy’. He also had a variety of projects in his professional life on the go and was wondering if he should put some on hold or even stop focusing on them so he could look after himself more.
Anthony spoke of his back pain and feeling something in his back pushing him forward, but also something pulling him back. He said he felt these sensations his whole life. He wanted to do something about it.
Anthony said, ‘I can be better, and get more work, but I can’t fulfil my existing commitments. I run around and do things. What is it in me that does this? But I do manage to take care of myself.’
I noticed Anthony described the pushing and pulling as not being done by him and that he had been experiencing it his whole life. To identify if Anthony felt that he had any role in this pushing and pulling, an ownership of sorts for it, I asked him, ‘Who or what is doing the pushing and pulling?’
The impact of family
on health and illness
Anthony started to talk about his father and uncle. They were the authority figures in his family. He felt he needed to live up to their expectations throughout his life. Anthony described himself as a ‘people pleaser’. He described their expectations as the pushing forward feeling in his back. He said it felt like a burden. Anthony felt the pushing forward sensation where the pain was in his back.
Anthony described the opposite feeling of being pulled/pushed back – the feeling of a cool breeze which balanced his energy, feeling more content and that he could let go. But he also said, ‘If I go too far, you (meaning himself) feel guilty and bad.’ (He leaned back as he said this.) He paraphrased what he told himself at these times, ‘Too weak. Don’t have a spine. Have to show up and be present.”
He talked of himself being in the middle of the pushing forward and pushing/pulling back sensations, not being able to please himself at a deeper level and not letting go.
The implications of this impact of family on health and illness
As in Anthony’s case, sometimes family dynamics can have a negative impact on our health. He was being caught between family expectations and wanting to do something different, between pleasing his family and pleasing himself.
This is a classic conflict – On the one hand, we want to belong to our family and be loyal to it even if the strategies we are using to do that are outdated. In Anthony’s case, he used the strategy of people pleasing to do this and continued to even though his father and uncle have died. On the other hand, we also want to be free of our family and be our own person.
Sometimes we end up seeing this belonging vs autonomy dynamic as an either-or choice – we can either remain loyal to the typical family dynamic or risk alienation. That pull to belonging can be very strong. But there can be a negative impact on our health in doing that which is also very strong. And after a time, you can no longer ignore the impact on your health. So what do you do?
Acknowledge how your
parents’ history contributes to your history
We talked a little about the history of his family that would have contributed to his father’s behaviour towards his wife and children. The father had lived through some very traumatic experiences in his own life. His first wife died in childbirth leaving a premature son (who lived).
The father followed family expectations to serve in the military, and during World War II fought through an intense battle where most of his comrades, who were also friends, died. He survived and lay with his dead comrades for 24-48 hours until he was rescued. As a consequence he suffered from PTSD and turned to alcohol to cope. He remarried and had several more children. He also fought with his second wife a lot.
All of the father’s experiences including the traumatic ones would have impacted how he related to himself, his wife and others, including how he parented his children. The impact of the traumas the parents experienced then filter down to the next generation.
Anthony was the youngest in his family and talked about the role he played in being the messenger between his mother and father. He also talked about how people pleasing was one way to deal with his father’s behaviour and to try and make things ok within the family. Trying to make things ok within a family is a lot for a child to try and do.
Not only was Anthony caught between meeting family expectations and his own expectations, between pleasing his family and pleasing himself, he was also caught in the middle of his parent’s relationship.
Transforming the
negative impact of family on health and illness
With Anthony I had him set up a visual map of his family. He used pieces of paper to represent his father, his mother, his father’s first wife who died in childbirth, his uncle and himself. We looked at the relationships between these family members.
I then had Anthony step into the shoes (so to speak) of these family members to gain greater insight into what their lives must have been like, and how they may have felt about that plus their relationships to the other family members.
During the exercise we also said a few sentences to the various family members to acknowledge everyone’s situation and the role they played in the family issue we were discussing.
Setting up a visual map or constellation of family members to gain new perspectives on an issue.
A key thing when saying these sentences is not blaming or judging anyone for what they did. Even if their actions were wrong. The sentences acknowledge what happened and what you will do going forwards. This brings ease to your feelings and restores a sense of movement to your situation. But if blame and judgement remain in the content of the sentences you say or how you say them, then the conflict remains. That doesn’t help you to move beyond the issue.
To support the client to generate these sentences, a common question I ask is, ‘If that family member(s) were standing before you now, what would you want to say to them with no blame or judgement?’
Reframing and changing the impact of family dynamics on your health
For Anthony, the exercise brought a sense of calmness. He mentioned the pain had lessened in his back. His said his spine was straighter, he felt relaxed and quiet within himself. He was questioning whether he needed to continue with certain professional projects. He talked of ‘being welcoming and content with whatever we learn and how I am living.’
This work is called family constellations. It highlights the hidden dynamics within a family which can impact our emotional, mental and/or physical health. Revealing these dynamics and acknowledging everyone’s role, issues and needs, gives you greater understanding into what happened. (And not all family members need to be present or even alive.)
This wider perspective and awareness in turn gives you greater choice of strategies to deal with your family and manage your health going forwards. It also restores a sense of balance within you. Your internal foundations of your sense of self and where you belong in this world feel more aligned and strengthened. You have a new kind of energy which restores a sense of movement.
This picture is courtesy of The Centre for Systemic Constellations. B Babcock added the annotations.
What’s it like for you?
Which dynamics in your family have or are negatively impacting your health? What contributes to those dynamics happening? What would you like to do about them? Share your thoughts or questions in the comments below or alternatively email them to me (contact form in sidebar).
If you are affected by a serious health issue and would like support to explore family relationships to improve communication and connection, have a look at how we can work together and get in touch for a free no obligation consultation.
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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.
Iwas 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.
Wishing for your old life but starting a new one feels like a large mountain to climb
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.
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
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.
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.
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.
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.
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.
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 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.
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.
Accepting a serious health issue can be hard so for the past few weeks, I’ve been describing strategies you can implement to transform that struggle into acceptance. The strategies have focused on mindfulness, how to be the fly-on-the-wall of your life, dealing with unhelpful thoughts and what acceptance really means. These strategies come from Acceptance Commitment Therapy (ACT). This week I explain the final two strategies: how taking Committed Action aligned to your Values are integral to getting to a place of acceptance with your health issue.
This is incredibly important. When we know what is truly important to us, we can more easily make decisions and take action in line with that. And that leads to living a meaningful life, which is what we all want for ourselves.
I’ll recap the ideas of Acceptance Commitment Therapy (ACT) here and its benefits so you can see how all the strategies hang together. If you wish to read the series in full, you can find the first post here and the second post here. In fact, I encourage you to because it has useful ideas and strategies you can start implementing immediately. It will also give you the full picture of ACT thereby demonstrating the benefits of this talking form of help.
The official definition of Acceptance Commitment Therapy, referred to as ACT (say it as the word ‘act’), is:
‘The goal of ACT is to increase psychological flexibility: the ability to contact the present moment and the psychological reaction it produces, as a fully conscious human being, and based on the situation, to persist with or change behaviour for valued ends.’ (Harris, 2007; Mindfulness Training Ltd., 2017)
Or to put it simply – To create a rich, full and meaningful life whilst accepting the pain and suffering which goes along with it.
You may read ‘accept the pain and suffering’ and think, ‘I’ve already got accepting this serious health issue to deal with!! What the hell is she on about?!’
Let me explain. Of course, we want to be happy more than we are sad or upset, yet sometimes life throws unpleasant or downright awful things our way. Sh*t happens as they say and it’s not fun. So when I say ‘accept’ this, I am not advocating saying ‘yes, this is such a great thing to have happened!’ It’s about acknowledging that yes, this sh*t thing has happened, this is how it has impacted me, this is how I feel about it.
As a society, we tend to push away and suppress bad things which happen to us or ‘bad’ feelings. So much so, anything ‘bad’ has become stigmatised. It is as if we ‘should never’ feel bad and ‘should always’ be happy. Yet when we suppress the ‘bad’ feelings, we don’t acknowledge them. And the ‘bad’ and unpleasant feelings so want to be acknowledged, they will leak out. The strategies used in Acceptance Commitment Therapy help you to visit with those feelings and acknowledge them so they become recognised as a normal aspect of your life. This all helps the process of accepting a serious health issue.
You don’t have to unpack and live with overwhelming feelings.
The key aspects of ACT are referred to in the above definitions:
The ability to contact the present moment is being able to bring our attention openly, non-judgementally and with curiosity to what is happening in the here and now to ourselves, to others around us, to the situation. This is also known as mindfulness.
Another side to contacting the present moment is being able to step outside of and observe ourselves. This is the first step in learning how ‘to stand in another person’s shoes’ and experiencing empathy with and for another. This can be learned.
Become aware of our psychological reactions to the present moment and identify whether these are helpful to ourselves or not.
Pain and suffering is a normal part of life, including unpleasant reactions we have to our here and now experiences, and it is important that we accept that. And accept the good things too.
If our reactions are not helpful, then we may wish to change our behaviour.
We change our behaviour to obtain what it is we value and want, i.e. our valued ends. But we need to know what it is we value to ensure our behaviour and actions we take align with that.
The following diagram shows these themes:
The Key Components of Acceptance Commitment Therapy
Let’s move on to talking about the last two principles of ACT, Values and Committed Action.
Values
Values are:
What you believe and value in life like learning, having integrity, fairness, security, etc. You may make decisions based on our values. For example, some people preferred to be employed because they value the security of the pay check every month. Others may prefer to work for themselves because they value freedom of choice. When you make decisions which aren’t aligned with your values, there can be that sense of disquiet that something is not quite right.
What you want for yourself in various areas of your life, the direction you want your life to take. These are the implicit or explicit goals you have for yourself regarding your:
Physical health
Psychological/ Emotional health
Occupational – Your work, career, education whether paid or unpaid
Relationships with family, friends, your social life
Hobbies, personal interests, fun
Finances
Where you live – home, town, city, state, county, country
Spirituality, religion, faith
Culture
Personal growth
This values exercise in this picture will help you learn more about what you value in life.
Clarifying your values so you can take action which aligns with them can help in accepting a serious health issue.
And to identify the direction you want to take in various areas of your life, get the Wellness Assessment which will help you do just that.
Get your free Wellness Appreciation workbook here
It helps you identify your levels of wellness in those areas of your life important to you and what you can do to increase them.
Your Wellness Assessment is on its way!
Committed Action
Committed Action means to take action to help you move in a valued direction in your life. Action can be something you say or do, a behavioural action for example. Or something you think or feel inside.
The Wellness Assessment I just mentioned will help you to start identifying some early action you can take in important areas of your life.
This is about committing to something for yourself. And that’s a lovely thing to be doing!
It is not about being perfect. Or expecting everything to happen perfectly.
It’s not about achieving everything by tomorrow. Small, even tiny goals that build on one another over time are great.
You will make mistakes, go off track, etc. That is part of life. It’s about learning from that and getting back on the track of your valued direction in life.
So taking action which aligns with what you value will result in you living the meaningful life you want even with the health issue you have. And that helps so much in accepting a serious health issue. I often find when clients do this, the good things in their life take priority.
What’s it like for you?
What is most important to you in your life? If you were living your life as you wanted whilst still having the serious health issue, what would you be doing?
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 would like support identify what is important to you so the action you take in 2018 aligns with that, have a look at how we can work together and get in touch for a free no obligation consultation.
Special offer for Christmas and the New Year – 20% off all coaching packages between now and 31st January 2018. Quote code #XMAS17NY18
Have a happy, relaxing and joyful holiday season and all the very best for your 2018!
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, share using the icons below.
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.
Last week I described what Acceptance Commitment Therapy (ACT) is, and how it can help you transform the struggle of a serious health issue to acceptance. I focused on two of its six principles – Contact with the Present Moment and The Observer Self. This week I explain the next two principles, Defusion and Acceptance.
I am going to recap some of last week’s post but you can also find it here if you wish to read it in full. In fact, I encourage you to because it has useful ideas and strategies you can start implementing immediately. It will also give you the full picture of ACT thereby demonstrating the benefits of this talking form of help.
The recap – Acceptance Commitment Therapy
The official definition of Acceptance Commitment Therapy, referred to as ACT (say it as the word ‘act’), is:
‘The goal of ACT is to increase psychological flexibility: the ability to contact the present moment and the psychological reaction it produces, as a fully conscious human being, and based on the situation, to persist with or change behaviour for valued ends.’ (Harris, 2007; Mindfulness Training Ltd., 2017)
Or to put it simply – To create a rich, full and meaningful life whilst accepting the pain and suffering which goes along with it.
The key aspects of ACT are referred to in the above definitions:
The ability to contact the present moment is being able to bring our attention openly, non-judgementally and with curiosity to what is happening in the here and now to ourselves, to others around us, to the situation. This is also known as mindfulness.
Another side to contacting the present moment is being able to step outside of and observe ourselves. This is the first step in learning how ‘to stand in another person’s shoes’ and experiencing empathy with and for another. This can be learned.
Become aware of our psychological reactions to the present moment and identify whether these are helpful to ourselves or not.
Pain and suffering is a normal part of life, including unpleasant reactions we have to our here and now experiences, and it is important that we accept that. And accept the good things too.
If our reactions are not helpful, then we may wish to change our behaviour.
We change our behaviour to obtain what it is we value and want, i.e. our valued ends. But we need to know what it is we value to ensure our behaviour and actions we take align with that.
The following diagram, referred to as the hexaflex, refers to these themes as follows:
The Key Components of Acceptance Commitment Therapy
Let’s move on to talking about the next two principles of ACT, Defusion and Acceptance.
Defusion
Sometimes we can become so caught up in our thoughts, we look at our lives through them. When these thoughts are unhelpful, we feel miserable and as if nothing will change. We may often say to ourselves, ‘Here we go again!’
But sometimes we don’t even know these thoughts and our resulting actions can be unhelpful. We actually think we are doing something good for ourselves. I often see this with clients in relation to living with a serious health issue. For example:
My clients want to live a good life. They tell themselves they don’t want to ‘give in’ to their condition, and they keep going, working hard, telling themselves they must not grumble and can’t stop for a break because what would people think. They take their medication early to reduce the pain. They feel better and end up working a longer day. This cycle continues until they are so tired and worn out, they have to take time off. They feel like they have ‘given in’ to the condition and the condition has ‘won’.
That’s a hard place to be in. What I love about Acceptance Commitment Therapy is its approach to dealing with these situations. ACT helps you to ‘defuse’ yourself from the thoughts and strategies you use which may actually not be helping you. ACT helps you notice what you are doing by using mindfulness and putting yourself into your Observer Self, which you can learn how to do here.
This means that rather than looking through the glasses of unhelpful thoughts and strategies, you take those glasses off and see the situation for what it is – you trying to help yourself in the best way you know how. But you realise it’s not working that well so you want to find a better way to help yourself.
Here is that new way
Our thoughts are our thoughts. We are NOT our thoughts.
Unhelpful thoughts can pop up in our minds like unwanted internet pop-up windows.
The aim here is not to banish the unwanted thoughts, because the good and the not-so-good are part of life and sometimes unhelpful thoughts can be a bit like those pesky internet pop-up windows. They can just happen. Acceptance figures in here and an explanation of that is coming up. The aim is to raise our awareness of our unhelpful thoughts, what triggers them, and find ways to move them swiftly along to reduce their negative influence.
When you notice an unhelpful thought, say to yourself, ‘I notice I am having the thought that….’ Write it down even.
Using that language and writing down the unhelpful thought puts you in your Observer Self. This in turn puts distance between you and the unhelpful thought so you can evaluate it. To evaluate it, ask yourself:
Is this thought in any way useful or helpful?
Is this thought an old story, one I’ve heard before?
What does it give me to buy into this story? What does it cost me?
Does this thought help me take effective action? Does it get me to where I really want to be in my life?
You can also picture the thought on a cloud and watch the wind blow it away.
Or picture the thought on a stick or a leaf in a stream and the flowing water carries it away.
Or put it on a boat that sails off somewhere and you don’t know where.
Or put the thought on a train, and you don’t get on that train.
How Defusion works in Acceptance Commitment Therapy
Acceptance
Acceptance is about accepting that the bad happens as well as the good in our lives. We can’t always prevent a serious health issue from happening like a spinal cord injury, cancer, heart attack, subarachnoid haemorrhage, stroke, Parkinson’s, etc.
When I say acceptance in this context, I am not saying we have to like it, want it or approve of it. Acceptance is not resigning to the condition thereby giving it the power over us. Far from it.
Acceptance is about the willingness to be with the unpleasantness rather than escape, avoid or try to get rid of it. By being with the unpleasantness, I am not asking you to unpack and live there. It is about visiting with the unpleasantness for a fixed period of time and exploring it using mindfulness.
I explain one way you can explore unpleasant feelings and emotions through an activity here. Another way is to describe what the feelings are like for you by giving them a shape, colour, weight, temperature, texture, a voice, etc.
What this process does is rather than using your energy to push the unpleasantness away, you use it to let the unpleasantness be where it is and notice it. Paradoxically, clients find this process lessens the unpleasant feelings and frees up their energy to focus on what is important to them and the action they can take to make that happen. We focus on this in next week’s post.
What we resists persists. Acceptance means to just let it be and notice it.
What’s it like for you?
What thoughts have you found particularly difficult to live with? And what has helped you to dampen their negative influence? Feel free to share your thoughts below via the comments.
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 would like support on your journey of acceptance, have a look at how we can work together and get in touch for a free no obligation consultation.
I also have a special offer on for Christmas and the New Year – 20% off all coaching packages between now and 31st January 2018. Just quote the code #XMAS17NY18.
Want to help me research ‘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.
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, use the sharing icons to pass it forward.
Get a free Wellness Appreciation Workbook to sense check your levels of wellness in the various parts of your life. And practical strategies weekly on managing the impact of a serious health issue and living well.
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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.
Healing the space where family relationships and health issues collide – Group workshop
An experiential workshop to help you navigate the space where family relationships and health issues collide with more ease.
