What to do when a health issue strikes at the most inconvenient time

What to do when a health issue strikes at the most inconvenient time

It sucks when a health issue strikes at the most inconvenient time. You’re busy, you got a life, work to do, people to see, family to take care, fun to have. And a health issue can stop everything. Or maybe not stop everything, but it can take up time and energy you would much rather be doing something else with.

Back in June I wrote about getting a diagnosis of arthritis in my hip, how that felt like a loss to me and moving on from feeling sad and bleh about it.

More has happened since then

In relation to my hip. And my breast.

All whilst trying to sort out our temporary accommodation, moving house, starting a full house refurbishment, organising and running a family weekend for children affected by rare neurological inflammatory conditions and their families, coaching, facilitating, trying to keep up the exercise (did not succeed at that), friend’s 50th birthday celebration in Majorca (that was nice), etc., etc.

Basically, during my busiest period of the year. Most inconvenient.

But health issues wait for no one and nothing

When a health issue strikes, it just strikes. That’s it. It won’t wait for you to finish that really interesting project, or have that party, or go on that holiday, or even have your baby. Health issues are genuinely non-discriminatory like that.

A picture of a couple discussion what they are doing on the weekend and their schedules. There are little green and red shapes near the woman's hip and breast. They are impending health issues she knows nothing about because they haven't yet manifested themselves or they are just a niggle. The point here is that health issues wait for no one and nothing. When a health issue strikes, it is going to strike.

So what do you do when a health issue strikes?

I came up with ten things you can do which will help. And I was using them myself last month.

Lesson One – You get on with it

This one we learn pretty quickly. We can’t do much about the fact that the health issue has happened. So we have to get on with it. And for many of us, that feels like the best and often times the only option.

Sometimes the other option of doing nothing can lead to death, ongoing disability or a feeling of powerlessness. So doing nothing doesn’t feel like an option. We want to live and live as well as we can.

Lesson two – It’s ok to get upset

I did about my hip. When I got back from Majorca, I had an appointment with the consultant. That was needed as the diagnosis was severe progressive osteoarthritis in my right hip.

Admission here: I did not mention the severe and progressive bits in June’s blog. Just felt too dramatic to me at the time in the context of how my hip affects my life. But I’m mentioning it now because I think I was downplaying things at the time.

The consultant’s verdict – It’s not a question of ‘if’, it’s a question of ‘when’ a hip replacement needs to happen.

I’m not even 50. I feel too young to have a hip replacement.

But health issues don’t discriminate based on age either. Or gender. I shed some tears.

And it’s important that if you are upset, to express your upset-ness in a way that works for you. I wrote about this not long ago.

When a health issue strikes, it’s just gonna strike

Two days after hearing that verdict, I went to the GP regarding a pain I had been having in my right armpit for the past three months.

I know, I know. I should have gone sooner. But between everything happening and focusing on my hip, I didn’t have the capacity to deal with that too.

But whilst in Majorca, I was having discharge from my right breast. (Sorry if this is too much info.) My body was speaking to me. When I called to make the appointment with the GP, one just happened to be available that afternoon. I felt lucky.

The GP did a breast examination and referred me to the local breast clinic.

The breast clinic called me four days later on the Monday morning saying they had scheduled me for the coming Friday, but someone had cancelled and an appointment was available in two hours. Was I free to come? I felt lucky again. The universe was sending me a message.

I made myself free. And off to the hospital I went. Packing a soft easy-to-wear bra just in case.

When a health issue strikes. I was wondering if that was happening when I had to go to the breast clinic for pain. And one did. They had to do a biopsy and after that it's always good to wear a soft bra after it.

This is how the breast clinic works

Regarding preliminary scanning that is. I was in this clinic last year being scanned and biopsied so I got to know the routine.

I saw the nurse practitioner who took my history, details of my issue and did a breast examination. A sample was taken of the discharge.

Then I had the mammogram. It’s like having your boob squashed in a machine. Am Ample of Bosom so there’s a lot to squash. But it is necessary squashing because it helps to tell you if something is amiss.

Picture of a woman having a mammogram. When a health issue strikes you may have to have medical procedures that hurt and can be embarrassing. But they can be lifesaving.

Lesson Three – Humour can help you get on with it

It helps me.

If they see something amiss in your mammogram results, you get called back for an ultrasound.

I was called back for an ultrasound.

‘You’ll be ok Barbara, you’ll be ok. You can do this.’ I kept telling myself, to reassure myself.

Lesson Four – Find 101 ways to reassure yourself

At least 101. Maybe more. Because you’re going to need it to get through scans, biopsies, treatment, rehabilitation, and life itself.

How do you reassure yourself when the going gets tough in relation to your #health issue? #seriousillness #chronicillness Click To Tweet

The consultant radiologist scanned me as they found an ‘indeterminant area’. You got to love the language they use. As I enjoy language, am pretty good with it, and good at asking questions too, I launched into curiosity question-mode.

‘So, tell me, what exactly is an indeterminant area?’

And using my best probing question approach to get info.

But those consultants are pretty good at remaining evasive. And they need to be. They have to get samples of what is going on and get those tested before they can definitively determine what that ‘indeterminant area’ actually is. They don’t want to worry patients unnecessarily or tell them the wrong thing either.

But she did use the word ‘lesion’ and of course I pounced with a probing question to try and find out a little more about this lesion.

Lesson Five – A breast biopsy is MUCH better than a lumbar puncture

So I had a biopsy. My sense that I had better bring my soft bra just in case was a good one.

I chose not to watch because it was just all a bit close. And I was grateful I knew what to expect this time around. This was my second biopsy on my right breast in two years. The universe is trying to tell me something I think.

I chatted to the consultant and nurse a bit and the consultant remarked on how well I was doing. I responded, ‘This biopsy is MUCH better than a lumbar puncture, trust me.’ But this is just my opinion based on my experience and there are people who may feel a breast biopsy is the worst procedure.

Lumbar punctures are awful procedures. When I had one done when in the acute phase of Transverse Myelitis, it took three attempts to get a sample of my cerebral spinal fluid that didn’t have blood in it and they had to get a bigger needle. It was weirdly painful, and I had a hangover headache for a week afterwards.

That finished, I was bandaged up, put the soft bra on and went to see the nurse practitioner. She explained that they would hope to know by the following week at the latest what was going on and they would either call me with the results or make an appointment.

That is code for, ‘If it’s good news, we will call you. If not so good news, we’ll make an appointment to see you.’

They’re quick to get you seen, efficient, professional, and kind. Kudos to the Sir William Rouse Unit at Kingston Hospital.

Lesson Six – You focus on what you can control

Scans and procedures done, it’s a case of waiting for the results.

It’s like living in a no-man’s land. You don’t know what will be or happen so you don’t know what to do now and how to prepare. Living with the not knowing in that interim time is not easy.

It’s not uncommon to feel you are not in control, but actually you can focus on what you can control in the here and now. I reminded myself of that. I couldn’t control that I was having pain in my armpit and breast nor that I was having breast discharge. I couldn’t control what the diagnosis was going to be. But I could do something about the here and now.

And I reminded myself of that. It’s one of the ways I reassure myself. (Lesson 4) So I consciously focused my energies on my work and the many other day to day stuff that was happening.

When you feel like you’re not in control due to a health issue, stop, bring yourself into the hear-and-now, breathe and remind yourself of what you can do in the here-and-now and focus on that #takecontrol #seriousillness Click To Tweet

Lesson Seven – Get help. Receive help

Despite being matter of fact about it all, I did shed tears. (Lesson 2) And speak to my therapist about it. I have a weekly therapy appointment so I used that to get and receive help. I received cuddles from my husband.

This is really important. Our society unfortunately prizes doing everything yourself. When a health issue strikes, sometimes being able to do everything yourself is not possible. You may need help with the kids, making meals, keeping yourself relatively sane. Receiving help doesn’t mean you are ‘less than’. It actually helps you to get things done and continue living your life.

A side benefit of all this is if you have the right people helping you, i.e. they want to help you and have the capability to help you, it benefits them as much as it benefits you. Win-win.

When a health issue strikes it is important to get help. The Willingness and Capability Matrix helps you to choose the people who can help. If they have low or no capability or aren't willing, find other people to help you if you can. If they are very willing but not very capable, think about the tasks they can help you with. If they are very capable but not willing to help you, think about when you ask for their help. And if they are very capable and willing, then ask for their help.

Lesson Eight – Prioritise what you’ve got on

Sometimes when a health issue strikes, you may be too unwell to do much or you can do most things but not some things. And you may have more appointments than usual. (Had three in one week for three different things.)

So prioritise what you can and need to do. If you can’t do it because physically you are unable to, get help if you need to. Otherwise, it will have to wait.

If it’s something you need to do, like look after your children or do a piece of work because it puts food on the table (to feed yourself and said children), do what you can. It doesn’t have to be to your usual standards.

Make sure not to overdo things. Doing less does not make you less than as a person.

Lesson 9 – Do nice things for you

Take a warm relaxing bath. Or chat with a friend. Read a book you’ve been wanting to. Light a candle. Make yourself a posh coffee or tea. Give yourself time and do nothing.

These are the little things that can be 5 minutes or 60 minutes. It doesn’t matter how long they are. The key thing is you are doing something you want for you.

Lesson 10 – Figure out what the universe is trying to tell you and do something about it.

One thing that repeatedly comes to me is taking time out for me by doing a body meditation. When I’ve done this, I have felt amazing benefits. I need to do more of it.

The other thing that comes up is inflammation. I notice I tend to get health issues that end in -itis, which means inflammation. Transverse Myelitis. Arthritis. What is it about inflammation and my body? 

Those two things have occurred to me so far. It may take a bit of time to figure this out and that is ok.

What is it like for you when a health issue strikes?

How did you handle it? What worked for you? Or if you are in the midst of it, what kind of support would help you?

If you are living with a challenging health issue 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.

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© Copyright Barbara Babcock 2019

What is the impact of anxiety like and how to manage it

What is the impact of anxiety like and how to manage it

The impact of anxiety – What is this like for you? Are you aware of when and how anxiety shows up in your life? How it slides into the driving seat in charge of your choices and actions? Do you know when it all started?

Many people have talked to me about the increase in anxiety after experiencing a serious health issue. A health issue tends to shatter our perception that we are totally in control – we realise we don’t have as much control as we thought. That and the resulting impact of not knowing what to do in this new place of not being well nor how long we will have to dwell there, anxiety can happen. In many cases, anxiety may have also predated the health issue but wasn’t as noticeable before the health issue’s onset.

The picture shows two people in a car. The license plate says 'self-care'. The woman in the passenger seat is saying, 'But I want to exercise and look after myself.' The person who is driving, which is anxiety, is saying, 'No you can't! You must do what I want! Now let me drive!' This picture demonstrates the impact of anxiety when it is in the driving seat of a part of your life. The anxiety can take over and drive your actions.

I was reminded of the impact of anxiety the other week

Most mornings I do my exercise and physiotherapy first. That way it gets done. But I noticed myself thinking in a loop-like fashion, ‘I have so much to do! I don’t have time to exercise! I need to get to work!’ It was a very familiar feeling.

Anxiety and its impact has been a part of my life but became much more noticeable after having Transverse Myelitis 10+ years ago. The kind of anxiety I am talking about here is the anxiety that is in the driving seat in some areas of your life but not in every aspect of your life. It’s not pleasant and it can be frustrating.

But it’s also not severely debilitating, it’s not a clinical diagnosis of anxiety nor does it cause you to disassociate or lose yourself. If the anxiety you feel does cause you to do that, then please obtain the support of a person who is qualified to work with that such as a clinical or counselling psychologist or psychotherapist.

The anxiety I was feeling is the kind that slides into the driving seat in some parts of my life particularly when I want to do something for myself. The impact of anxiety is that my self-care plummets.

My plants are like a barometer. I usually am taking care of them well when I am caring for myself well. What’s your barometer for knowing when you are caring for yourself well or not? #wellness #selfcare Click To Tweet

So this is what I did when I noticed my loop-like thinking. I took apart my approach and share it with you here to help you manage the impact of anxiety.

What the impact of anxiety is like

Back to that morning. I was sitting there just about to start my workout and the thoughts were going around and around in my head about not having enough time to work out and wanting to get to work at my computer.

A very busy period is starting for me where I will have two big projects happening and other smaller ones going on in the background. Four of them will be happening at the same time. (Trust me, this wasn’t planned.) This will last through mid-June, quiet down for a week, and then things will get busy again through mid-July.

The next thing I noticed was giving myself the suggestion to start work, I could do my exercise and physiotherapy in the early afternoon as a break.

I realised that I would probably end up not working out if I did that. Because that is what has often happened in the past.

Then I made myself do what I have my clients do.

I made myself notice what the anxiety was like

I sat still and just felt what the impact of the anxiety was like in my body. I felt the sensations in my body. From the waist up I was shaking a bit. I noticed I turned my head around to the right looking behind me. As if I was looking out for someone. I felt a little scared.

I was curious about me wanting to turn to the right and look behind me so I did that again. I noticed I still felt scared. And kind of young. Suddenly a childhood memory came up of my father telling me to get to work.

My internal response to this all was, ‘I must get the work done. I don’t want to get in trouble.’

Rocket science doesn’t need to tell me when and where my anxiety started. And it’s interesting how it is still present to some degree 40 years on and how it can drive my actions if I let it.

A picture of a woman considering the impact of anxiety in her life. She is remembering back to 40 years ago when she was a child. Her father is being very stern with her telling her to do her chores. She is looking up at him and thinking, 'I'm scared. I had better work.' In the present day, the woman is having a light bulb moment and is thinking, 'Hmm. That was then. This is now. I don't have to work all the time!' This demonstrates how our early experiences can influence our actions in the present. They can be the source of our anxieties. But you can lessen the impact of anxiety in your life today.

What I learned about the impact of anxiety on me

Two things were going on for me. The first trigger was the busy period and wondering how I would fit everything in. The next trigger was the loop-like thinking.

In this context I felt the anxiety as an internal shaking in me. (How you experience anxiety may be different.)

It was the movement of turning to look over my right shoulder and noticing I felt scared and young which really struck me. That and the childhood memory of my father telling me to get to work. He was an authoritarian father. He had a rota of chores for us to do and kept us busy doing them. As a young child, he more often barked commands and demands than words of warmth and gentleness. (He was dealing with his own anxiety but that is a story for another day. But interesting to note how anxiety can be passed on in families.)

This historical context turned out to be important

I’ll explain more about that in a bit.

My response to ‘get the work done’ felt familiar. It’s a common response when I feel I have a lot going on, conflicting demands and desires, and not a lot of time to do everything I want to do. I may want to workout and do other things to look after myself and my wellness but historically work would win out. That would calm the anxiety.

That nearly happened the other morning. Anxiety was sliding into the driving seat pushing me to work rather than self-care. Notice the black and white choice I was giving myself: work or self-care. I wasn’t allowing myself to have both or another option. That can happen when we feel stress due to anxiety, we give ourselves either-or choices.

The picture shows two boxes one with the word either in it and the other box with the word or in it. This demonstrates that when we feel stressed and experiencing the impact of anxiety, we often give ourselves an either-or choice. What is recommended is to take a step back and give yourself more than two choices. This is demonstrated in the rest of the pic which shows either in one box, or in another box and a second or in another box.

I told myself I would be fine, work will be there and it was ok to do my exercise and physiotherapy first. Which I proceeded to do.

What was the purpose of my anxiety?

What purpose does any #anxiety you feel serve? #seriousillness #mentalhealth #MentalHealthAwarenessWeek Click To Tweet

I went over this in a coaching session and learned that the purpose of the anxiety wasn’t necessarily all bad. It enabled me to have inner motivation to work and get a job done and strong focus on the task at hand.

However, the focus is so strong it means I get absorbed in the task or project and hours can go by without me drinking water, eating, going to the loo or taking a break. Self-care slides right off the agenda.

But I also said to my coach the anxiety no longer has a purpose. The context has changed. My father is no longer with us. My mother lives in the USA. I have no parents telling me what to do. I am my own parent now. I don’t have any parents to please. I only have to please myself. The historical context is no longer relevant. But I had been responding as if it was.

Much of the stress we experience can be due to blindly following outdated strategies. My strategy of ‘getting the work done’ had a purpose at one stage of my life, it served its role. But now it’s time to update the strategy. Here is how to do that when anxiety is trying to be in the driving seat of parts of your life.

How to manage the impact of anxiety

If the anxiety feels scary for you to deal with, please only do this with someone you trust, preferably a trained professional.

As you do this exercise, hold on to something that reminds you of the here and now. This helps to keep you anchored in the present.

Dealing with low-level anxiety that gets in the driving seat of parts of your life? Want to learn how to manage it better? Click here to learn how #anxiety #seriousillness #chronicillness Click To Tweet

1. Learn your trigger(s).

There may be more than one. They may follow each other in a sequence or not. You will need to slow yourself down to do this. Sit for a time and take yourself step-by-step through what happened when you last noticed your anxiety. If you can do this as the anxiety appears, that’s a good time to do it too.

2. Really notice how anxiety affects you physically.

How does anxiety appear in your body? Spend time with it. And as you spend time feeling the sensations, gently remind yourself you do not have to unpack and live in the anxiety. You’re just visiting with it for a short while. Set a timer for 2-3 minutes if this helps you.

3. Notice what thoughts you have.

Write them down even. Doing that helps you keep one step removed from them so you don’t unpack and live in them.

4. Notice if you feel a compulsion to move.

And notice what that movement is like. Are you wanting to move away from something, reach or move towards something, turn and look for someone? It could be anything. Repeat the movement if it helps you to get a sense of what that movement is about.

5. Notice any feelings associated with the movement.

Are you feeling surprised, scared, numb, excited, young, weaker, something else?

Observing #anxiety to understand its different components – the triggers, feelings, thoughts, any historical memories that come up, its purpose – can help to understand its role in your life and whether that role is still relevant… Click To Tweet

6. Notice if any historical memories come up for you.

Make sure you are holding on to your here-and-now item. Remind yourself you are in the present.

The historical memories I am referring to here are often not pleasant but they do not cause you to disassociate from yourself or to lose yourself in them. As you think of these memories, you realise you are still in the present and you can move on from thinking about them to focusing on something else.

But if you have a sense that something big is going to come up for you, that the historical memory was very traumatic for you and you do not feel ready to look at it yet, that’s ok. Stop and don’t continue with this exercise.

When it comes to dealing with anxiety due to very traumatic episodes in your life, I highly recommend you work with a psychotherapist or psychologist who is experienced in working with such traumas.

The historical memories can be from any period in your life. If other people are involved, notice what they are saying and doing if anything. And what you are saying and doing in return. Also notice how you are feeling about it all. This is about noticing the historical context of what may have kick started the anxiety.

7. Evaluate what is different about your current life as compared to your history.

How is your life currently different from the historical context? Who is no longer present in your life? Or they may be present but you don’t see them as often. What have you learned about yourself in the intervening years that contradicts whatever it was you thought about yourself in that historical context? What are your skills and strengths? Who else is in your life now who supports you to make the choices you want to be making?

This is key. Knowing the differences between your life then and now allows you to explain and reassure yourself that doing something different will turn out ok. This can help to quiet the anxiety a bit so you can get on with making different choices.

8. Develop a way to reassure yourself to calm the anxiety

Now that you know what is so different about your present life as compared to your history, develop a way to reassure yourself in those moments when anxiety wants to take over.

For me I have a conversation with myself. That morning I explained to myself that my father was no longer here to bark orders at me and it was more than ok to do things differently. I might not get as much work done but that wasn’t the point. The world was not going to end and my self-care is super important.  I proceeded to do my exercise and physiotherapy. I still felt some anxiety but it eventually went away.

How you reassure yourself is unique to you. You may wish to journal your thoughts, draw, do another activity, whatever.

9. Keep practicing

You have to keep practicing making the choices you want for yourself rather than let anxiety dictate them for you. Don’t worry about perfection. Good enough is fine. You will respond as per the old strategy at times. That happens. It still happens with me from time to time. I even still feel the anxiety a little when I make the choices I want for myself. But the impact of anxiety does lessen.

10. Shower yourself in self-compassion

The reason you go back to old ways and still feel some of the anxiety when you make different choices is because you’re changing something that has probably been around for a few decades. So be gentle with yourself. Shower yourself in self-compassion.

This picture shows the 10 things you can do to manage the impact of anxiety in your life. It requires you to slow down and really notice. 1) Learn your triggers. 2) Notice how anxiety affects you physically. 3) Notice what thoughts you have. 4) Notice if you feel a compulsion to move. 5) Notice any feelings associated with the movement. 6) Do any historical memories come up for you? 7) Evaluate how your present life is different from your history. 8) Develop a way to reassure yourself to calm the anxiety when it appears. 9) Keep practicing reassuring yourself and making new choices. 10) Shower yourself in self-compassion.

What’s the impact of anxiety like for you?

When and how do you experience anxiety? And what has helped you to manage it? 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 to manage an even transform the impact of anxiety, have a look at how we can work together and get in touch for a free no obligation consultation.

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Know of someone who would benefit from reading this blog, or you just want to spread the ideas, click on the icons to share.

© Copyright Barbara Babcock 2019

Here are the 10 things to do when your recovery is uncertain

Here are the 10 things to do when your recovery is uncertain

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.

When your prognosis for #recovery is uncertain, it doesn’t mean you can do nothing. There are 10 things you can do to take some control back. Read more here #seriousillness #seriousinjury Tell a friend

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

Picture of a continuum of recovery where at one end is No Recovery and the other end Complete Recovery. In between there is 'Some recovery, have residual symptoms and a permanent disability' and 'Have residual symptoms but overall a good recovery'. A man is sitting below the continuum asking, 'Where will I end up?' When your recovery is uncertain, you don't know what kind of recovery you will ultimately have.

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.

Picture of an original quote by Return to Wellness: If you weren't fighting your illness or injury, what would you be doing instead? Sometimes when your recovery is uncertain, you can end up fighting your illness or injury. But this actually doesn't help your recovery process as the fighting can generate a lot of stress and anxiety.

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.
When you’re the prognosis for your #recovery is uncertain and the doctors haven’t given you a care plan, you can develop your own non-medical #rehabilitation plan. Get a few pointers here #seriousillness #seriousinjury Tell a friend

4. Adopt a learning mindset

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).

When your recovery is uncertain, it is important to develop your willingness muscle to adapt. In the picture there is a man doing bicep curls and he is saying, "I need to strengthen this muscle." There is a woman on a half balancing ball saying, "This is supposed to be good for my legs and balance." On the mirror in this Return To Wellness Gym is a quote, "Developing your willingness muscle to adapt is an all over body workout."

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’.

A picture of a man saying to his partner, "Thank you for everything you've done for me and us." Genuine acknowledgement of a family member's support is so valuable.

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.

Remember to hold your wants lightly for a cure or to get 100% better. If you fiercely cling to these wants, you can inadvertently limit your ability to adapt, and remain stuck. Chances are that is not what you want for yourself… Tell a friend

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.

In the picture there are 10 things listed which you can do when your recovery is uncertain. Learn to live with uncertainty. Take control of what you can. Develop your rehabilitation plan. Adopt a learning mindset. Develop your willingness muscle to adapt. Ask for and say yes to help. Talk to your family. Limit comparison to others and your pre-illness/injured self. Hold your wants lightly. Maintain a well-tuned sense of humour.

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.

Pass it forward

Know of someone who would benefit from reading this blog, or you just want to spread the ideas, click on the icons to share.

© Copyright Barbara Babcock 2019

What is the impact of family on health and illness?

What is the impact of family on health and illness?

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.

Picture of a family having dinner together around a table, a mother, father, two daughters and son. The father is saying the eldest daughter is ready to return to university as they don't want her to get too far behind. The mother is saying it is too early as Lisa's chronic fatigue has only just started to improve a little. The younger daughter is thinking, "Uh oh. Mum is frustrated with Dad." The son is thinking how he wishes for sausages for dinner rather than all the vegetables they are eating. Lisa is thinking that she wishes her Dad would listen to her Mum. This demonstrates the impact of family on health and illness.

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.

How might the dynamics in your #family relationships be affecting your #health and #wellness? Click To Tweet

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.

A picture of a young man feeling caught between his father's expectations of him and his dreams and desired future. He feels the family expectations hitting his back and he is actually experiencing back pain. This demonstrates the impact of family on health and illness.

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.

Sometimes the issues and conflicts in our #family can impact us so much our #health suffers. Read more about that here. Click To Tweet

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.

#trauma can impact our #health physically and mentally. But the traumatic experiences of your parents can also impact your generation. Read how here. Tell a Friend

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.

A picture of small wooden dolls representing various family members. The family constellation methodology can help you look at the impact of family on health and illness and gain new perspectives.
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?’

Picture of the Return to Wellness lily with the following words superimposed on it: If your family were standing before you now, what would you want to say to them with no blame or judgement? Just to acknowledge how things were, are now and how you want them to be? This is a key aspect of the family constellation methodology which can help you evaluate the impact of family on health and illness or injury.

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.

An image of seven generations of a family. It resembles a peacock. You are in the bottom middle. Connected to you and situated above you are your mother and father. Branching out from them are their mother and father and so on back seven generations. This picture is courtesy of The Centre for Systemic Constellations.
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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© Copyright Barbara Babcock 2019

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


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