Living with a long term condition like myelopathy
Life is stressful. Every day there are lots of events that will fill up our "stress buckets" to varying levels…the computer stops working, we drop a cup, there's a queue in the shop.
If we have had a bad night’s sleep our stress bucket is already part full before we get out of bed.
Living with long term health conditions means we may have buckets almost overflowing to start the day with and then one "small" stress makes that bucket overflow and everything feels impossible to cope with.
Finding ways to manage our stress levels reduces those times of feeling overwhelmed. It can also have a positive impact on our physical health. There are many very good online resources with tips and techniques that you may find helpful.
Managing energy levels
With any health condition, there is a significant impact on our energy levels. Generally, we tend to go through life doing the most we can in the shortest time. Then our health can stop us in our tracks.
Learning to manage our energy so it feels less of a rollercoaster and more predictable can be tricky. This site has a whole range of self help resources. This link is specifically to the cycles we get into which can make managing energy difficult, and ways to make changes:
SELF HELP FOR CHRONIC PAIN or FATIGUE
Spoon Theory is another approach to managing energy:
BUT YOU DON'T LOOK SICK
Managing pain levels, like fatigue, links to the ideas of pacing and spoon theory. There are also specific resources about pain such as:
CHRONIC PAIN SELF HELP GUIDE
The pain toolkit is created by someone who experiences chronic pain. There are videos on this site and also a pdf download:
The British Pain Society also has helpful information:
BRITISH PAIN SOCIETY
It feels like you can’t go anywhere nowadays without hearing someone talking about mindfulness. This is an approach developed from eastern Buddhist meditation techniques and applied to pain management. It was found to be so helpful it has spread throughout healthcare as a way of managing stress.
At its core is a very simple idea, which is surprisingly difficult to put into practice:
“Be in the present moment.”
Most of the time we are caught up in thoughts or regrets about the past, or worries about the future, and rarely notice the present.
Have you ever driven somewhere, arriving without remembering the journey? Have you ever been reading a book without taking it in? Looking at your watch without actually seeing the time? These are all examples of being "mindless" which is the opposite of being mindful.
There are some good links about mindfulness here, and several downloads and resources to listen to:
WHAT IS MIND-FULLNESS
GET SELF HELP
There are many mindfulness books available. In my work I tend to use Mindfulness for Dummies, by Shamash Alidina, as it is so practical.
One very simple mindfulness practice is to go through all your senses, focusing on each one in turn. By doing this you are totally absorbing yourself in the present, even if only very briefly.
I’m also a fan of the mindful eating idea, often done with a raisin but this one uses chocolate
A great article from Brain & Life (American academy of neurology) on meditation called Inner peace.
BRAIN & LIFE
We now have our very own INSIGHT TIMER group for Cervical Myelopathy you can join by entering your details in the form below
How kind are you to yourself?
When you are having a tough day, do you congratulate yourself on what you manage despite that, or do you have a go at yourself for struggling?
As humans we are generally pretty rubbish at being kind to ourselves. An approach called compassion focused therapy is based on how the human brain evolved and explains why we are so tough on ourselves.
Paul Gilbert, who developed this approach, believes in sharing all the resources and information:
A summary of compassion focused therapy ideas can be found at:
GET SELF HELP COMPASSION
There are some nice worksheets on becoming aware of your levels of criticism and compassion practices under therapist resources at:
ACT WITH COMPASSION
The centre for clinical interventions is an Australian site with excellent self help workbooks for a whole range of issues including building compassion, managing panic, dealing with distress and overcoming perfectionism (a character trait many of us have but which makes pacing energy nigh on impossible so definitely worth a quick look):
Most have simple questions in the first module to help you assess whether this is a specific area that might be helpful for you to explore further.
Finally, the great thing about the internet is just how many resources there are.
You may have come across many that you could share on a forum like this to help others.
There are also great Apps like Headspace which talk you through mindfulness exercises.
This is a list of Apps recommended by the NHS:
GET SELF HELP APPS
Here is a list here of
If you feel you want further support for your mental health and ways of managing stress, a good first point of contact is your GP who can refer on to primary care therapy.
There are many parts of the UK where you can also refer yourself - the NHS website has a service finder:
SERVICE SEARCH PSYCHOLOGICAL THERAPIES
Mind often offer free courses and support:
If you feel you are in crisis with your mental health and you are
having – suicidal thoughts and feelings; or thoughts about harming yourself or someone else; or you have seriously hurt yourself…
You can go to any hospital A&E department and ask for help (if you need to, call 999 and ask for an ambulance). There are specialist mental health liaison teams in hospitals who will see you quickly and be able to offer the most appropriate support.
Dr Amalia Gasson Amalia has been working in adult mental health in the NHS for eight years, currently working in a community mental health rehabilitation team. She is experienced in working therapeutically with clients with a wide range of difficulties, with a focus on anxiety, depression, relationship difficulties and serious mental health difficulties. She also has an interest in chronic pain and physical health conditions and has completed research into chronic fatigue syndrome.