The burdens and the gifts of a chronic health condition

Hello and welcome to this weeks post on what I see as the burdens and the gifts of having a chronic pain condition.

I speak from my own experience in this blog of having chronic pain for the past 8 years. Everyone’s experiences will be different in terms of the symptoms that they have, their coping strategies and the support structure that they have around them.

I would very much welcome hearing from you if you want to share your own experiences with me, either by commenting on this blog post, or following my Facebook page ‘Flourishing MK’.

Having a chronic pain, or other long-term health condition can be an extremely lonely and isolating experience, so please if you’d like to reach out please get in touch.

I am also running an eight-week Mindfulness for Health course at the end of September, this is where in a small group setting you can learn mindfulness based pain management.

If you haven’t got it already I highly recommend purchasing this book: https://www.amazon.co.uk/Mindfulness-Health-practical-relieving-restoring/dp/074995924X/ref=sr_1_1?ie=UTF8&qid=1534011600&sr=8-1&keywords=mindfulness+health

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Picture from: http://www.amazon.co.uk

Anyway, let’s get back to business, the burdens and the gifts of a chronic pain condition:

 

Burdens

  1. Hospital stays, operations, medical appointments.

    hospital

This was me before my last operation.

As a person with a chronic pain, or other long-term health condition I’m sure that you are very familiar with your medical health care team. Whether this be your GP, consultant and the various medical departments and wards of your local Hospital.

If you need operations this can involve having to take time off of work, possible embarrassment and loss of dignity (depending on the area being operated on). Obviously there will be pain and discomfort from the operation and possible side effects of the medication, for example sickness and loss of appetite.

This is the face of my chronic pain, not a nice picture as I’m sure that you will agree!

I share this picture to illustrate what a burden chronic pain can be, especially when there is no easy ‘fix’, or solution to make things better:

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2. Associated symptoms

Okay, so I could go on and on with this section – about the associated symptoms that you can get with a chronic pain, or other long-term health condition.

Here are just a few symptoms of Fibromyalgia. As you can see the list is massive and can make getting a diagnosis very difficult.

Fibromyalgia-Signs-Causes-and-Treatment

Image taken from: http://www.drnumb.com/blog/fibromyalgia-signs-causes-treatment/

A condition such as this also makes day-to-day life very unpredictable as you never know how you are going to feel from one day to the next – and if you are having a pain flare up you may not know how you will be from one hour to the next (this feeds into my point 3!).

In my experience the pain and associated symptoms of a long–term health condition can make day-to-day responsibilities such as managing the household, looking after children and pets, working, studying etc…very difficult!

burn-out

burnout

 

For me – a big thing can be a  lack of energy. Leading to a lack of productivity at certain times and exhaustion.

burn out 1

We learn a lot about pacing on the eight week Mindfulness for Health course.

The idea behind this being that you keep a diary of your daily activities for seven days and then rate your pain levels out of 10 for each activity.

Then you analyse the diary and find the activities that are making your pain worse, the activities that have no effect on your pain and the activities that make you feel better.

With the activities that make your pain worse, e.g. standing, sitting, housework etc…You reduce the time spent on these and then monitor your pain levels. Gradually increasing the activity levels to a point where the pain is more manageable.

I’ve often heard Vidyamala the founder of the Breathworks approach in interviews saying that the pacing program is the thing that has made the most difference.

As we are meditating for 20 minutes (or more) a day, it is important to look at what we are doing for the rest of the time in our waking day.

 

3. Cancelling social engagements, or other commitments.

family-at-the-table-300x200

Picture from: https://hireachef.com.au/party-food-ideas/family-at-the-table/

Now this point I feel is one of the hardest and painful parts of having a chronic health condition.

Wanting to do things, such as go out with friends and family, making plans and then having to cancel things at the last minute as you are too unwell to attend.

Or not being able to do all the things with your children, or pets that you would like to. Examples of activities could include going on holiday, going to the adventure playground, doing different sports, walking the dog.

I think this is one of the big points that could lead to social isolation.

People may stop asking you to go out, fear of letting people down may stop you from accepting invitations, or fear of making the pain worse may stop you from accepting invitations to go out.

All the time your social circle gets smaller and smaller…

Could lead to feelings of sadness, anxiety and even depression…

Sadness picture from: http://www.fanpop.com/clubs/sadness-inside-out/images/38695292/title/sadness-wallpaper-wallpaper

 

Social isolation can be another reason why the face-to-face eight week mindfulness course is beneficial to your health and wellbeing. As you are getting out of the house and meeting like-minded individuals who want to learn to meditate and who are also likely to have a chronic health conditions.

When I supported a mindfulness for health course recently I saw first-hand how beneficial it was for the group participants to learn and to share their experiences in a group setting.

 

4. Fear for the future

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I have heard this from clients, and it is true for my own experience.

Having a chronic health condition can lead to fear for what the future holds…

This fear can come from many sources and could include:

  • Fear of medical tests and waiting for results (please see my last blog post for more on this).

  • Anxiety caused by the pain. If the pain is excruciating and you are struggling to find relief, e.g. after taking the maximum dose of painkillers, using heat, ice and other self-help strategies – what next?

    This can be very fear inducing, how will you cope and get through the next minute, let alone the next hour with pain like this?

  • Long-term fears for your health.

    Questions that may go through your mind could be will my condition get worse over time? Will I be able to work? Will I end up disabled and in a wheel-chair? Will I be able to have a family? …

 

These are very difficult fears to face alone. This is where seeking the support of a good friend, or family member can be beneficial.

Also helpful here (in my experience) is seeking the long-term support of a professional counsellor.

As I mentioned in my last blog. Counselling offers a safe and confidential space where you can talk to a professional about your condition and all the ways in which it is affecting you and your life.

A good place to start looking for a counsellor in your local area is the online counselling directory: https://www.counselling-directory.org.uk/

counselling-directory-logo

counselling

Counsellors will have different areas of qualifications and experience, so it is important to look at their profiles carefully and to find someone who you feel that you can trust and feel comfortable in working with.

 

Gifts of a chronic health condition

gifts

Picture from: http://worldstageslondon.org.uk/the-best-cast-gifts-ever/

Okay, after so many burdens of having a chronic pain, or other health condition, how I hear you ask can there be any gifts associated with having a long-term health condition? Crazy right, well read on…

 

  1. Family time and what your body can do becomes precious

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When you are really poorly, bed bound, in pain and in the fearful place that I mentioned above, where you are worried about how you will get through the next minute with your pain and worried about what your condition might mean for your future…

Then when you have good days with your health, anytime that you can spend with your family becomes precious.

Also activities that your body can do become precious. Providing a positive and welcome distraction from the pain, also a sense of achievement that may be lacking, if your condition has meant that you have had to give up things that you previously enjoyed.

 

I probably appreciate what my body can do and appreciate my good days where I can spend precious time out walking, or doing my favourite activities, a lot more than when I was in my early twenties. I took my body for granted and thought nothing of running marathons and working out seven days a week in the gym.

 

2. Building stronger relationships

This is a really important gift to hold on to.

As I mentioned in the first part of this blog, having a chronic pain condition may mean that you struggle to hold down a job, or struggle to attend social engagements. As a result of this you may lose contact with friends, family members, or work colleagues.

I think there is a positive side to this in that the people who care for you, such as a partner, in the act of caring for you this can create a stronger bond between you.

Also, with the friends that do stick around and keep in contact, you are likely to have a stronger bond as well. In my experience in sharing your vulnerabilities and truths with one-another this can also create a stronger and more trusting friendship.

 

3. Caring for yourself

Caring for myself has been a valuable lesson that having chronic pain has taught me.

For those of you that know me, or have been following my blog you will know of the self-care wheel:

self_care_wheel

This wheel splits your life up into several slices and several different areas that are important in order to get a good life balance and resulting health and well-being.

I try to work on as many different areas of this self-care wheel as I can and some of my favourite activities include:

Creativity

 

Finding a hobby

(The first one in my dreams!!)

 

Massages/ reflexology

c700x420

 

Get out into nature

 

What could you try from the self-care wheel in the next week, the next month?

To find some valuable time to recharge your batteries and nourish yourself and your well-being.

 

4. Perhaps a new hobby, or career path?

Through my own experiences of living with chronic pain, receiving personal counselling and learning mindfulness meditation have inspired me to want to train to become a counsellor and mindfulness teacher.

In order that I could use my skills and experiences to help others who may be experiences difficulties in living with their condition as I had…

 

I would absolutely love to hear from you. Please leave me a comment, or contact me via my Facebook page ‘Flourishing MK’.

What are your burdens and unexpected gifts that you have received from your own chronic health condition?

Also if you want to learn more about my Mindfulness for Health course please get in touch.

 

Have a great week,

 

Warm wishes,

 

Mary x

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