Dealing with anger as a carer so you don’t end up operating from the dark side of helping

Dealing with anger as a carer so you don’t end up operating from the dark side of helping

Dealing with anger as a carer of someone with a serious health issue can be really tough. You may also be dealing with rejection from them, feel crap about the situation generally but also genuinely wondering what you can to help and how to manage the situation.

We can be overloaded sometimes with the anger, rejection and unpleasant feelings that we react badly and end up in the dark side of helping. You don’t want to act in this way, but with all the stress you are under, it is understandable that it happens.

You want to find ways to not get so angry at your loved one’s anger over their health situation. This third post in the series on the dark side of helping deals with that. It focuses on you the supporter, your needs and some things to keep in mind as you are on this journey to support effectively rather than operate from the dark side of helping.

Pic of woman holding on to someone else's anger, dropping her own wellness and moving towards the dark side of helping

The potential impact of holding on to someone else’s anger

 

It’s important because you may not always get much recognition, if any, for what you do and what you are going through. But your experience is just as valid and it’s important you receive support too.

I am picking up where we left off at the second post where I wrote about the process a person with a serious health issue goes through when realising what they are no longer capable of doing, and the reasons they may not want to accept your help. As I said in first post, helping others is a good thing and recognised as being good for our mental health (Mental Health Foundation, 2018; Psychology Today, 2018; NPR, 2018). Yet there are times when providing the help doesn’t fulfil the helper’s original intentions to help, nor help the person it is meant to. This blog series is exploring that situation. The primary audience are those of us in a caring role – the carer, spouse, another family member, friend, colleague. I am using the term supporter to reflect that role.

If you are coming across this series for the first time, my aim is to share my learning from having operated from the dark side of helping, not to judge. Also, to raise awareness so you can make mindful choices of when to offer your help and when not to.

Dealing with the anger of the person who has a #serioushealthissue and you are helping is not easy. Read 4 things you can do to lessen the anger’s impact on you. #carer #caring tell a friend

 

Dealing with anger as a carer

 

During this time, you may feel your help could make their life easier, but they just won’t accept it even though it’s based on good intentions. So, you feel rejected. It can feel like you are constantly being pushed away and after a time there is only so much rejection you can take. This is tough. You are doing the best you can in a tough situation neither of you wanted to be in.

What can be happening is the person you are supporting could be holding a lot of anger over what has happened to them. And frustration, and grief. It can be so much to hold, they try to get rid of some of it by giving it to others through their reactions and lashing out.

When someone is #angry with the impact of their #serioushealthissue their #anger can sometimes be covering the #grief they feel for what they have lost. #carer #caring tell a friend

 

You don’t have to hold their anger or grief for them. That won’t help you in dealing with anger as a carer or to support someone effectively. If you hold someone’s anger, grief, frustration, whatever, you can end up draining your inner resources to deal with the situation. You can end up in a vicious cycle of you both throwing your anger back and forth at one another. Which in turn can lead to the type of resentment mentioned above.

Instead, you can do the following to support the person.

 

Demonstrate empathy

 

Demonstrate empathy rather than sympathy for the person. They are two different abilities and people can confuse them. It’s important not to do that in this case.

Empathy is the ‘ability to identify with or understand the perspective, experiences, or motivations of another individual and to comprehend and share another individual’s emotional state.’

Sympathy is a ‘feeling of pity or sorrow for the distress of another; commiseration’.

Some people say you cannot experience true empathy if you haven’t had the same experience as the other person. Given that you don’t often have the same experience as another, what you can do is remember a time or situation in your life when you experienced similar enough feelings.

You don’t need to mention the situation you experienced or say very much. Empathy doesn’t have to be verbal. Sometimes you only have to get in touch with the feelings you felt at that time which are similar to the what the person you are supporting is feeling now. Often times this is more than good enough.

 

‘Hold the space’ for them

 

This expression is what people who support others – like coaches, therapists, listeners – often use. It means to be in the present moment, being your authentic self, witnessing and allowing what is happening for the other person you are with without judgement.

It’s about using yourself to create a safe space for another to just be and express what they want and need to. Again, holding the space does not have to be verbal.

Here’s a good article that expands on what ‘holding the space’ means.

 

Acknowledge their feelings

 

This entails verbally acknowledging how the other person is feeling. This is really important because it validates their experience, it lets them know that you see and recognise it. You could say:

‘I can see that XYZ is really troubling you.’

‘I can see that you are worried about…’

‘It seems as if you feel that…’

‘Are you feeling…?’

Don’t be surprised if the other person corrects you, that they are not feeling what you said but something else. If they corrected you, that’s actually a good thing because you now have a clearer idea of how they actually are feeling.

Also, we aren’t mind readers and don’t live in other people’s bodies, so we can never truly know how another person is feeling. We may get to a close approximation of it and that’s good enough.

We aren’t mind readers and don’t live in other people’s bodies, so we can never truly know how another person is feeling. Important to remind ourselves of this when we are in the #caring role. #carer #serioushealthissue tell a friend

 

Sometimes acknowledgement is non-verbal. It is simply listening to the other person express themselves and whatever they are feeling even if what they are feeling is very unpleasant or really happy.

Acknowledgement of this kind is not about telling a story when you experienced similar feelings or someone else you know has. Unless of course the person has expressly asked you for such information. Acknowledgement is active witnessing of the person’s experience.

 

Acknowledge the impact on you and the both of you

 

At times it is appropriate to highlight the impact the situation and their anger is having on you and that you are doing your best. This may not be appropriate every time. You have to learn to judge when it is. You may make a mistake from time to time as you are figuring that out and that can help you learn what works and what doesn’t.

From my experience as a carer, I learned it is when the other person may be upset but it is not at the level where they are not receptive to what you have to say. I have also found there may be a pause and they look you in the eye. When they do that, they are seeking connection. At this point it’s a judgement call as to what you say.

If you feel it is appropriate to say something about the impact on you, with all the empathy and love you have, you can look back at them and gently say, ‘It’s not easy for you, I can see that. I haven’t found it easy. I’m doing my best.’ Or use words that are comfortable for you and appropriate to your situation. You will notice I include acknowledgement of the other person so it doesn’t come across as a ‘me but not you’ but a ‘me and you’.

Sometimes you may not need to mention the impact on you as it is evident to both of you.

 

dealing with anger as a carer there are 4 things to do

 

Hopefully these four ways of dealing with anger as a carer helps to lessen the negative impact anger can have. Again, it’s important as the supporter you’ve got sources of support where you speak to a trusted person who can acknowledge what you are going through, that your experience is valid, and help you develop strategies to get through it and keep relatively sane.

 

Next time

 

Come back in two weeks when I will continue sharing the strategies you can use to manage tough situations, help effectively and to support yourself.

 

What’s it like for you?

 

What has your experience been like of dealing with anger as a carer? Are these strategies new to you? What other strategies have worked for 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 supporting someone who is, and would like to return to a sense of wellness, have a look at how we can work together and get in touch for a free no obligation consultation.

 

Help with research on acceptance

 

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

 

Pass it forward

 

Although 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

 

What the dark side of helping people who have a serious health issue is like – Part 2

What the dark side of helping people who have a serious health issue is like – Part 2

We continue our series on the dark side of helping people affected by illness or injury by talking about the reasons they may not want your offers of help (however well-meaning they are).

As I said in the earlier post, helping others is a good thing and recognised as being good for us (Mental Health Foundation, 2018; Psychology Today, 2018; NPR, 2018).

Yet there are times when providing the help doesn’t fulfil the helper’s original intentions to help, nor help the person. This blog series is exploring that situation.

This post will explain the views of people on the receiving end of such help and give some ideas and tips to give you more choices on when to offer and withhold your help. It’s important as relationships you value can end as a result of the dark side of helping. And this is often not your intention when helping someone.

 

Pic of man in wheelchair and woman with sticks saying they are going to share their thoughts on helping

 

My aim is to share my learning from having operated at times from the dark side of helping so you can make mindful choices when to offer your help and when not to. Many of us have been there and done it. The important thing is learning from it.

 

What is the dark side of helping?

 

A quick recap – The dark side of helping is when someone helps another, and the person helping hasn’t asked if it’s needed. It’s a proactive form of help, which our society feels is a good thing. But the helper as assumed the person being helped needs or wants it. The person being helped hasn’t asked for it, so we don’t know if it is wanted or needed.

 

Pic of man insisting on helping a person who uses is sticks and is carrying a bag, the dark side of helping

 

The impact of the dark side of helping

 

People who get around using a wheelchair, stick or walking frame have often told me it doesn’t feel good to be on the receiving end of this kind of help. They gave four reasons why. These reasons can also apply to people living with invisible illnesses. So have a read to learn what to do to make sure you don’t end up inadvertently wandering in the dark side of helping.

You want to help someone who has a #serioushealthissue #seriousinjury #chronicillness But they don’t want your help. Read the four reasons why here tell a friend

 

Reason 1: It’s an invasion of personal space

 

It some cases it can be when it involves you physically doing something for someone.

 

Reason 2: It can feel demeaning

 

People I’ve spoken said it can come across as if the person helping assumes the person is no longer capable of doing what they are setting out to do because of the illness or injury. To live with people treating you as if you do not have the capability can erode your sense of self-efficacy (your belief in your ability to accomplish a task or succeed in a particular situation), self-esteem and self-worth over time.

As the person helping, you may say that the person is no longer capable of doing that activity. This can go several ways.

Ask yourself how you feel watching the person doing the activity. Are you thinking they can’t do it? Are you worried they will hurt themselves or drop something? Is it taking longer? And you’re busy and don’t have the time to wait for them to finish. Does it feel more laborious to you? Do you think you can do it more quickly or better? These are common reactions and they can often highlight your assumptions, standards, expectations, wants or needs.

If you find yourself feeling this way, that’s ok. Just notice it and you don’t have to act on it. The downside of acting on these feelings is you inadvertently transfer them to the person you are trying to help even if you don’t say anything about how you are feeling. For example, if you help someone because you can’t stand how much effort it is taking them to do what is expected to be a simple task… you get the feeling.

It’s not nice being on the receiving end of that kind of help. It’s difficult to understand. The person may wonder if they have done something wrong. Or be upset because they were trying to exercise their independence. It can also be confusing and uncomfortable when you don’t know the person trying to help you.

If you don’t know the person at all or only a little, ask before you help.

If you know the person and there is a time element to the situation where you both have to be somewhere, or it’s an issue of keeping the person safe (a safeguarding issue), I recommend finding a way to talk about when your help might actually be recommended or necessary. This can be a talk of a more delicate nature and warrants a separate article for another day.

 

Pic of woman having taken over of making tea for a man in a wheelchair

Wanting to try doing things for yourself when living in a changed body.

 

Reason 3: It disempowers the person you are helping

 

The person you are supporting may no longer be capable of doing the activity how they used to do it pre-illness/injury. But they may be able to find a new way of doing it. This a key process for people living in a changed body to go through. It fosters adaptability and flexibility which are key qualities they need to deal with the ongoing impact of their illness/injury, to look after themselves, and regain a quality of life.

When you rush in to help someone without asking, it’s focusing on what the person cannot do and that isn’t empowering. When you support someone to figure things out, you are focusing on the possibilities that exist for them and what they can do. They may not always be sure what they can do, so you can give some suggestions (if they are open to them and you may need to ask them that too). You can also give them your moral support and belief in them, both which can be incredibly empowering for the person.

This kind of help on your part fosters a reciprocal partnership. It strengthens the person’s resolve that they can figure out a new way to do things, what they can do on their own and what they cannot. They may make a mess, drop things, and take a long time. They will express frustration. But they learn, and it can be empowering to find a new way of doing things. It feeds their sense of self-worth. So voluntary help can actually prevent people from going through this helpful process.

When you support someone with a #serioushealthissue to figure things out for themselves, you are focusing on the possibilities that exist for them and what they can do #empowerment #inclusivity #disability tell a friend

 

Reason 4: It takes away control

 

The person may actually no longer have the capability to do what they want. But for some people they have to go through the process of figuring this out for themselves. It will contain more meaning for them than someone telling them they are no longer capable. Even though it is hard for them to digest this realisation and for you to witness.

They retain a sense of control in making the decision knowing what they are capable of and not. When someone tells you verbally or through their actions that you are not capable, it highlights a difference between you and the person/people telling you. Your sense of belonging can feel threatened. It feels like you can’t decide for yourself anymore. You can feel ‘less than’. This can erode your sense of self-efficacy and self-esteem as mentioned above.

Over the long-term, it can foster resentment for both people in the relationship:

Supporter: I resent you because you can no longer do what you used to do and now I have to do it.

Person being helped: I resent you having to do things for me.

This resentment can result in malfunctioning co-dependent relationships.

This realisation process of learning what one is capable or not capable of is tough because it involves the person acknowledging the loss of capability due to their illness or injury. And they may not be ready to do that just yet, particularly if they (and you) really valued the lost capability. It can take time.

And during this time, the greatest thing you can be doing for yourself is to make sure you have support and time out (as far as that is possible, I know it’s tough at times to have time out). This will enable you to top up your inner resources of patience, strength and whatever else you need to keep going.

 

Pic of a woman talking to another woman to get some support

Getting support for yourself when you are supporting another is important.

 

Next time

 

Come back in two weeks where I will share the strategies you can use to manage tough situations, help effectively and to support yourself.

 

What’s it like for you?

 

What has your experience of supporting someone or receiving help taught you about the dark side of helping? What advice would you share with others to make sure they didn’t operate from that place? 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 supporting someone who is, and would like to return to a sense of wellness, have a look at how we can work together and get in touch for a free no obligation consultation.

 

Help with research on acceptance

 

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

 

Pass it forward

 

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

© Copyright Barbara Babcock 2018

 

What health coaching is like for people with serious health issues

What health coaching is like for people with serious health issues

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

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

 

Return to wellness: My health coaching experience

 

When my life changed forever

 

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

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

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

 

The irony….

 

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

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

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

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

After all this effort.

I was STUCK.

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

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

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

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

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

 

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

 

The turning point

 

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

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

 

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

 

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

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

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

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

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

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

The power of writing about your feelings.

 

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

 

 

Health coaching empowered me to focus on what I can do

 

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

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

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

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

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

Wendy H, York

 

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

Finding your own path towards wellness and your new normality

 

What’s it like for you?

 

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

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

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

 

Help with research on acceptance

 

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

 

Pass it forward

 

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

© Copyright Barbara Babcock 2018

 

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

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

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

 

About Transverse Myelitis

 

Transverse Myelitis, which I’ll refer to as TM, is a rare neurological inflammatory condition resulting in inflammation in the spinal cord. The inflammation can be at any point along your spinal cord and you will be affected in your body from that point downwards. For example, if you have inflammatory lesions in the cervical region, your arms, torso and legs will be affected. If the lesions are in the thoracic region, your torso and legs will be affected but not your arms.

It is an auto-immune disorder which means that your immune system attacks your body instead of the virus, infection or whatever it was supposed to be dealing with. So it is not an illness you ‘catch’ from anything or anyone; it’s not contagious or genetic.

Transverse Myelitis is in the same disease family as Multiple Sclerosis, just much more rare. Approximately 300 people per year are diagnosed with TM in the UK.

The onset of TM can be sudden over a few hours, or more gradual over days, weeks or even months. Red flag symptoms can include back pain (not just lower back pain), paralysis or muscle weakness in arms and/or legs (and hence mobility issues), bladder and bowel issues, sexual dysfunction, sensory disturbance (like a numbing sensation), and pain which can feel like a shooting, stabbing, crawling, freezing, hot or banding like pain.

TM is typically a one-off episode which can leave a person with ongoing residual symptoms such as paralysis, weakness, mobility issues, bladder and bowel issues, sensory disturbance, neuropathic pain, fatigue, and depression. The recovery process is a very uncertain one and doctors cannot predict how much functionality a person will regain and how long it will take. Recovery will start a few weeks to months after onset and can continue for more than two years.

Every person is affected differently by TM. Some people can be left with a lifelong disability, others can make a good recovery. For some people, TM is the first presentation of Multiple Sclerosis or Neuromyelitis Optica. For a small percentage of people, TM can be recurrent.

Awareness ribbon for Transverse Myelitis

 

My story of Transverse Myelitis – The onset

 

Today is 13 October 2016 (when I originally wrote this article), 8 years to the day I was advised by my GP to go to A&E (Accident and Emergency) as soon as possible. I was feeling strong pins and needles, and shooting, stabbing pain all throughout the saddle area. Sitting for any length of time was painful. So was standing. I felt like I poo-ed my pants and was constantly checking whether I had. I hadn’t. Walking was painful. I was due to deliver a presentation that evening, but cancelled it as going to A&E took priority.

In A&E, a host of tests were done. Despite being in pain, I was pretty relaxed, chatting with my other half and making my way through a bag of Haribo sweets I asked him to bring me. (Learning: Do not eat sweets whilst in A&E. It wreaks havoc on your blood sugars, and the nurses ask you all sorts of questions about whether you are diabetic and may not be convinced if you tell them no.) They wanted to admit me. I was meant to fly to the USA in three days for my sister’s wedding, so I wanted to return home. They strongly advised me to follow their advice. I did.

Tests commenced. Long sessions in the MRI scanner. A lumbar puncture that required a longer needle than what the doctors were initially using, and 3-4 tries before they got a clean sample of my cerebrospinal fluid. I had to remind the very excited medical students that there was a patient at the end of the needle who was scared, in discomfort and needed to be looked after.

With each passing day, the pins and needles and stabbing and shooting pain progressed down my body. Banding pain joined the noisy party inside of me. I felt like I couldn’t breathe and I could feel the panic rising. I finally figured out I could breathe and that what I was experiencing was some kind of pain.

Walking felt like pushing through the heaviest of treacle and my legs felt twice the size they actually were. I couldn’t walk more than 10 steps so acquiesced to using a wheelchair. I never made it to my sister’s wedding.

The pain, odd sensations and banding crept above my waist. More tests were ordered. Water hitting my skin and wearing clothes became very painful. I couldn’t sense temperature either. I still showered telling myself I was going to maintain a routine and be clean despite everything. Time feels plentiful in hospital so I laid there doing visualisations of a healing white light going up and down my spine and forced myself to walk as far as I could however badly I was walking.

A surprise for me and a highlight for the neurologist leading my case was accidentally discovering that I have another rare neurological condition in her area of expertise of movement disorders – geniospasm. It is a rare hereditary movement disorder where the chin shakes at random times and often for no reason. So I was discharged from hospital with two rare neurological conditions. I’ve had geniospasm all my life and never knew it was a recognised disorder and rare.

In relation to Transverse Myelitis, they didn’t tell me I had that. They only told me that I had ‘inflammation of the spinal cord’ with two lesions at C4 and C5, was seriously ill, should not work for several months and rest. I was worried as my job had been made redundant earlier in the summer and I had been actively looking for work.

 

After hospital – Learning to live with Transverse Myelitis

 

I returned home from hospital after 2 weeks. I had to rest a lot because of the fatigue and pain. A two block walk to the store and back would tire me out so much I slept for the rest of the day. As we were technically on holiday, my other half was able to be at home with me for a few days to make sure I could look after myself. The day he returned to work, he learned that his job was being made redundant.

Picture of a person with fatigue sleeping on a sofa

When fatigue is present, resting is important

 

I learned of my diagnosis in a letter the neurologist sent to my GP, a copy of which was sent to me. In it was written ‘cervical myelitis’. So I naturally turned to Google and what I read scared me. I experienced so much anxiety and fear for my health, my future and my life. The quality of my sleep wasn’t great due to the anxiety, pain and geniospasm (for some reason the TM re-triggered the geniospasm and my badly shaking chin would wake me up at night).

I couldn’t do much at all and was bored senseless. So I started genealogical research. Although it was painful and slow to type, it was a good temporary distraction from my health issues. And I usually had an interesting piece of info to share with my husband about my family at the end of the day.

In time, I found the Transverse Myelitis Association in the USA and the Transverse Myelitis Society in the UK where I live. The information was limited at that time but a talk by a neurologist at the TM Society’s London support group answered some of my questions. I also had regular follow-up visits with the neurologist which helped too. I was one of the lucky ones to see a neurologist regularly post-diagnosis and I think the geniospasm had a role to play in that.

 

Logo for the Transverse Myelitis Society

 

The months passed and bit by bit, I improved. The fatigue started to dissipate. I swam and did yoga. I started a new job and was thankful it was part-time because I was still experiencing fatigue and pain. I started studying for my first coaching qualification and that helped me immensely to come to terms with what happened.

A completely separate issue from the Transverse Myelitis was learning at this time that we would not be able to have children. Between the death of my father in 2007, caring for my mother after she had emergency heart surgery in Spring 2008, my job being made redundant soon after that, getting seriously ill in Autumn 2008, then my husband’s job being made redundant, that news felt like another blow and a particularly cruel one. People with serious health issues and particularly chronic ones often mention about not having a choice to go on, you just do. I get that.

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

 

Nine months later, I still had sensory disturbance, neuropathic pain, some fatigue, and didn’t have full sensory awareness in my hands. The neurologist said that might be it for the rest of my life. It felt like something finished when I heard that prognosis. A finality. On the outside, I looked and functioned normally. All things considered, my recovery was a good one.

 

Making meaning of my illness experience

 

I got involved with the Transverse Myelitis Society and offered my skillset of NLP (Neuro Linguistic Programming), coaching and adult learning to use for the benefit of members through delivering presentations and writing articles. I had been using my skillset on myself and found it immensely helpful.

In 2010, I was asked to join the TM Society’s management committee. In 2011, I started a masters in coaching psychology and focused my research on the impact of coaching on the wellbeing of people living with TM and their primary caregivers. I included the carer, often a family member, as I saw how they are also affected. I was curious whether coaching could help people find a way to live well (enough) with the impact of the condition. I learned it can. You can read a summary of that research project here.

In April 2013, I became Chair of the UK TM Society for a three-year term which finished in April 2016. It was an opportunity to use my skillset in a greater way for the benefit of our members. This aligned with my values of being in service to others for a good cause and developing myself. I enjoyed introducing new services, events and information for our members: a Coaching Bursary Scheme, an Equipment Grant Scheme, the Family Weekend in the UK, and information such as the TM Condition Insight Report and TM Frequently Asked Questions document. I enjoyed having the opportunity through charities such as the Neurological Alliance, National Voices and Spinal Injuries Association to raise awareness and represent the needs of TM Society members across the charity sector and amongst government officials and the NHS.

 

Life beyond Transverse Myelitis

 

Even though I have stepped back from the Chair role and the TM Society’s management committee, I am still involved as a volunteer. Separately, I am helping a neurologist design a research project on TM and we hope it will get the necessary funding. I have studied Acceptance Commitment Therapy because I wanted to learn different approaches to helping people through the process of acceptance of difficult situations. I’ve also been studying Systemic Constellations to help people resolve issues relating to family dynamics and illness. This all feels like good work to be doing. It is also work I very much enjoy and wonder if ‘work’ is the right word. I am grateful for the opportunity.

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

 

What we think is broken can actually nurture beauty

 

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

 

When I reflect on my involvement with the TM Society, the healthcare profession and charity sector in the UK, and my coaching work, I think of Kintsugi bowls. They are Japanese bowls that broke and are mended with gold seams. It’s about honouring the wound and beauty from the brokenness. It is a symbol of rebirth, that nothing is ever truly broken beyond repair.

So our bodies may have been wounded. At times we may feel that they are broken. But beauty can spring forth from the brokenness. And that is my hope for all of us affected by a serious health issue, including our children and families: may we nurture and grow the beauty that we still hold within us.

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

 

What’s it like for you?

 

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

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

 

Help with research on acceptance

 

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

 

Pass it forward

 

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

© Copyright Barbara Babcock 2018

 

Convalescence after illness is a lost art

Convalescence after illness is a lost art

I think convalescence after illness has become a lost art. This thought occurred to me last week whilst being horizontal due to the winter flu, which hit me hard this year, and still getting emails from people offering alternative dates for meetings I cancelled due to the illness.

Last week I was feeling battered and bruised by flu. Not only did I have the flu symptoms to contend with but also their impact on existing symptoms I live with due to having had Transverse Myelitis. An illness can exacerbate TM symptoms and it can also take longer to recuperate from an illness. I wasn’t in a good place.

As I laid on the sofa looking out the window at a brick wall, I thought back to last year when I had the flu and after the worst was over, was still affected for a further month. I resolved that this year I would do what I did last year and not return to work, activities, etc. at full throttle. But this year, given I was hit harder than last year, I would also convalesce.

Picture of window with a view of brick wall

View whilst ill with flu last week.

 

But I am not finding convalescing easy. Work and activities are tugging at me demanding my attention. Life wants me back on the dance floor. I want to dance. But I also want to rest as fatigue has taken up residence, is still visiting, and I haven’t had a decent night’s sleep for over a week now. Thankfully the fatigue is now just a thin bed sheet rather than the thick and heavy blanket it was last week. But still, it is a sign that continued rest is necessary.

If you live with a serious health issue, particularly chronic illnesses that just don’t stop, you probably inadvertently convalesce because you have to. Yet there is that desire to return to activities you can. This blog is for you. If you do not live with a serious health issue of any sort, this blog is especially for you.

I want to resurrect the lost of art of convalescence and by doing that hopefully start a change in society’s thinking regarding recovery from common illnesses such as the flu.

 

What is convalescence after illness?

 

Convalesce means to

  • Recover one’s health and strength over a period of time after an illness or medical treatment (Oxford Dictionary, 2018)
  • To rest in order to get better after an illness (Cambridge Dictionary, 2018)

You look up synonyms for the word convalescence and you see words such as

  • recuperation, recovery, return to health, process of getting better, rehabilitation, improvement, mending, restoration

So there’s a period of illness, THEN there’s a period of convalescing. One comes after the other.

 

Pic of a person resting when ill then sitting in a chair convalescing

When you are ill, you sleep and rest. THEN you convalesce. It’s about a gradual return to your work, activities and life.

 

But in our drive to do, work, achieve, we have stripped out convalescence, that period of mending and restoration. So much so, I am not sure as a society we know how to convalesce anymore. It is becoming a lost art. And this is where I think people living with chronic illness may have something to teach us.

 

Why has convalescence after illness become a lost art?

 

Illness in our society has become something to get over as quickly as possible. In some ways I get that because being ill is not pleasant. We may be in pain and feel distinctly unwell and that prevents us from doing things we enjoy and want to be doing.

On the other hand, illness happens. It is part and parcel of life. Just as sometimes we are happy and other times we are sad and upset.

I think of the commercials which show someone with cold or flu-like symptoms who looks and feels awful, they take the medication being advertised, and lo and behold they are as good as new! They continue with working and being productive! Amazing!

That medication must be magic because I took that kind of stuff all last week and it may have taken the edge off the symptoms, but those symptoms were still very much present.

I appreciate the commercials are trying to sell us the dream of instant good health, yet seeing these kind of commercials over and over again can set an expectation (if you let it) –  If you take medication, you will be fine, and can continue with your work and activities.

I also think of workplaces that want a sick note from your doctor after a week of being absent due to illness. Having worked in HR, I know the reasons for this and they are sound. But still, does it send the message that you can’t be ill for long?

Illnesses generally don’t work to others’ timing expectations. They come, take up residence and in some cases, don’t budge for a very long time.

These reasons also point to why is it so hard to convalesce after illness. Expectations have developed in our society that A) medication will sort you out, B) so you won’t be ill for long and can get back to work, activities, etc. and C) therefore you should not be ill for long. If people are holding these expectations, and coupled with the always on culture of mobile phones and social media, it’s not surprising that convalescence after illness has become a lost art.

 

It’s hard to #convalesce after #illness because expectations have developed in our society that A) medication will sort you out B) so you won’t be ill for long and can get back to work, activities, etc. and C) therefore you should… tell a friend

 

What are the benefits of convalescence after illness?

 

Convalescence after illness allows your body to return to health and wellness. Even if you have a chronic illness (but your definition of health will most likely have changed and be different than pre-illness).

Here’s an example. Think of your body as a town. When you get ill, it’s like a gang coming in to your town and defacing a part of it. The town council sends out its workers to make repairs. The workers make the structural repairs but there is still painting to do.

However, with the structural repairs having been made you feel better. So you go back to your work and activities. Meanwhile, the workers are busy painting so the buildings have a layer of protection against the weather.

Given the workers are busy, another gang sees that the town is an easy target and strikes another part of it. Some of the workers are diverted to fix that damage. They have been working night and day and they are tired. They haven’t had a rest in ages it seems.

There’s also been some bad weather and the first site has experienced damage again. The roads also need clearing of tree debris and potholes need fixing. The town is in a right state and doesn’t have enough workers to fix all the damage. The workers who are working haven’t had a rest in a long time, are tired and getting sick themselves.

The point here is that even though we may feel better, our bodies are still in fix and repair mode. And we need to give our bodies time to go through that healing process so it’s fortified against future gang attacks and unexpected bad weather.

 

Ill with the #commoncold or #flu this winter season? Even though you may be feeling better, your body could still be in fix and repair mode. Give yourself time to #convalesce tell a friend

 

How do you convalesce?

 

Create space to focus on you

  • Clear your diary. When doing this, budget twice the amount of time you think it will take to get better.
  • Turn on your out of office on your email accounts. Do the equivalent on social media.
  • Manage other people’s expectations – Tell people you’ll respond when you feel better and you are not wholly sure when that will be. If they keep contacting you, don’t respond. You’ve told them once.
  • Manage your own expectations – You may miss deadlines. Others may not be wholly happy about that. But the world will not end.

Look after your body

  • Have someone help you stock up on your favourite warming drinks – herbal tea, chicken broth and lemsips are mine. If you have someone who can make them for you, give them that job. And drink lots of water.
  • If you can eat, continue with a balanced diet. It’s tempting to eat pasta, but a week of that isn’t good for your digestive track. Trust me on this one. If you have someone who can help, get them to do the cooking.

Rest and gentle activities

  • If you feel well enough to read, great. If not, it’s an opportunity to watch daytime telly. Or catch up on anything you have recorded. Other gentle activities ca be knitting, drawing, or just day dreaming.
  • If there is no energy for gentle activities, find a nice view to look at. One that is better than a brick wall. Good views feed the soul. Views can also be found online.
  • Enforced time out can be a blessing in disguise. You have time to reflect, dream, think about anything you want to do differently.

 

How do you #convalesce after #illness? Create space to focus on you. Look after your body. Rest and gentle activities. tell a friend

 

As for me. I needed that reminder! I’m focusing on doing two work tasks a day. I have a few meetings in the latter half of this week but I am doing those from home. And I’m off to drink this restorative veggie and fruit smoothie.

 

Picture of a glass of smoothie spinach pineapple apple cucumber lime

Smoothie = spinach + pineapple + apple + cucumber + lime

 

What’s it like for you?

 

If you are living with a serious health issue or chronic illness, what convalescence advice would you give to our friends who don’t have one but currently have the common cold or flu? What do you do to help you stay as well as you can? Share your thoughts in the comments below.

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

 

Help with research on acceptance

 

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

 

Pass it forward

 

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

© Copyright Barbara Babcock 2018

References

Definitions for convalescence downloaded from the online Oxford and Cambridge Dictionaries 30th January 2018

  • https://en.oxforddictionaries.com/definition/convalesce
  • https://dictionary.cambridge.org/dictionary/english/convalesce
You can transform the struggle of a serious health issue into acceptance – Part 2

You can transform the struggle of a serious health issue into acceptance – Part 2

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:

  1. 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.
  2. 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.
  3. Become aware of our psychological reactions to the present moment and identify whether these are helpful to ourselves or not.
  4. 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.
  5. If our reactions are not helpful, then we may wish to change our behaviour.
  6. 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:

Key components of acceptance commitment therapy picture

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.

Or hear the thought using a silly voice.

Enhance your #wellness by putting unhelpful thoughts on a cloud and let the wind blow them away tell a friend
Get rid of unhelpful thoughts picture

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.

Acceptance of a serious health issue isn't about giving up, giving in or resignation. It's the willingness to be with unpleasant feelings rather than escape, avoid or try to get rid of them tell a friend

 

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.

Acceptance is letting feelings be and noticing them picture

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.

© Copyright Barbara Babcock 2017

 

References

Harris, R. (2007). Acceptance and Commitment Therapy (ACT) Introductory Workshop Handout. Available

https://thehappinesstrap.com/upimages/2007%20Introductory%20ACT%20Workshop%20Handout%20-%20%20Russ%20Harris.pdf, (2017, November 20).

Whitfield H. (2011), Acceptance & Commitment Therapy Handbook, ACT Four Day Skills Intensive Part 1 & 2. London: Mindfulness Training Ltd.

 

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