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Is it possible to be happy and find acceptance when living a restricted life?
By Chronic Warrioress
I am the Chronic Warrioress for I keep fighting on! 42 years old, mum to a 3-year-old whilst living with auto immune condition, weakened immune system, ME, Fibromyalgia and have spent 2020 fighting breast cancer. Horse obsessed!
I was diagnosed with an auto-immune condition when I was 8. At 20, they removed my spleen to try to fix it, however it didn’t work and I have since been diagnosed with ME and Fibromyalgia. So, instead of fixing me, the operation made things much worse and I now have to live with a compromised immune system.
I was in the depths of depression 10 years ago as I found I could no longer do all I used to, and I slowly gave up one love after another and any hope of the career in the police force I’d hoped for. I gave up the Police Specials, I gave up the pony rescue centre I used to help run, I gave up my own pony as I was unable to care for him and his welfare would have been at risk. I gave up going out and stopped making plans as I’d inevitably have to cancel and I lost touch with many friends. I felt forgotten.
10 years on and despite fighting breast cancer this year I am very accepting of my health and the limitations it has brought. I found a new way of living and although it is still frustrating, I can accept it for what it is and on the whole I am happy. I even have a 3-year-old daughter, something I never thought possible. However, the acceptance is not linear; there are times it hits me all over again, no matter how hard I have worked at it and how grateful I am for the small and big things in my life: the loss of what could have been, the inability to do things I love will still suddenly knock me sideways. But that’s ok because I know it will pass.
We go through so many emotions and processes when living with chronic illness, that never stops. Just as I think I may have accepted life for what it is, a curve ball is thrown at me, it could be something big like this year’s cancer diagnosis; or something that seems trivial but can really trigger me, that's normally when I see other people having happy times with their horses and I start feeling jealous and grief again for having lost what I loved so dearly (horses have been my life since I was 5).
When you live with a chronic illness you also live with fear. I was in a job for 18 years and too scared to try anything else as my health was too erratic. I was worried that I wouldn’t have passed probation anywhere else or have been paid full pay for any time off sick. I did love the people I worked with and they were wonderful employers, and I'll be forever grateful of that stability during some very dark times. However, my health always meant I couldn't risk anything else, fear kept me there. I had the odd job interview and even got offered 3 jobs but I just couldn't take that step, I needed to be sure I could keep a roof over my head. In order to work I had to spend every minute I wasn’t working resting. It wasn’t fun, but at that time I could work, I currently can’t do that.
An ongoing daily fear of mine is a fear of overdoing it and the fibromyalgia flaring as a result. At the time of writing I am fearful as I did a 10 minute walk yesterday, today I have a sore throat, ringing ears, fuzzy head, am dizzy and very weak. I am fearful a crash is coming because I dared a 10-minute walk with my daughter to feed the swans. At the moment every ounce of energy I have is used to look after my daughter so anything extra I do is a risk, fortunately I have my parents who live with me so have good support.
How do we find acceptance?
It’s not easy. A pivotal step forward for me in finding acceptance was doing an 8-week mindfulness course. It was designed for those living with long term health conditions. At week 6 I still couldn’t see how I would be able to accept the life I had but over time it came. Using the mindfulness methods of being in the moment and taking note of the small things really helped me. I started looking into other methods of meditation and found mindfulness in a herd of horses hugely healing, from there I discovered Reiki and trained in this alongside training as a horse healer. I never thought these are things I would do; I was a complete sceptic, but I found peace and happiness in doing them and therefore acceptance. Being still in nature, being calm and at peace alongside an animal that trusts me made me happy, something I had almost given up on. Having found something new I loved I was able to start to work on accepting what I had lost and allowing the grief that comes with it.
Life is restrictive when living with chronic illness, the key for me was to learn to accept those restrictions as best I could and live a happy life within them.
If you are able to try new things that you feel are within your capabilities then you may find a new love. For me that was Reiki and equine healing and through this I also met and become friends with the most wonderfully supportive people.
Refusing to accept what's happening is a tough ride. I used to believe that accepting that way of life would mean I had given up and lost hope, that the fight had run out of me. As it turned out that’s not what acceptance is about. It's not the same as “giving in”. It's about learning to live the best life you can within your capabilities and continually assessing if anything has changed health-wise to allow you do more. Finding new loves. Accepting some days will be really shit but others won’t and finding joy and gratitude in the small things.
The cancer diagnosis this year threw me into a huge turmoil, acceptance was gone, huge grief and fear were back and I worried I was where I started 10 years ago. Thankfully I was able to draw on my experiences to regain a healthier outlook again but I still struggle some days, especially on those when I can’t run around with my daughter and take her the places we used to go. Before cancer I had a good balance, I lived within my limits but knew what they were, the mindfulness kept me tuned into my body, so I knew when to stop and rest, or cancel plans. Sadly the cancer and treatment have changed everything and I am back to a very restrictive life, but I found a balance before and over time and with the support of my family I am sure I will do it again. In the meantime, I accept some days are going to be hard, really hard physically and emotionally – that’s just how it is, I can’t change it.
I trained for a year in shamanic practices and a big revelation to me during this was how to accept and work with the shadow self, the unknown side which is often thought to be negative, the one that holds our dark emotions. We can feel like it's wrong and shouldn't be there, we block it out because it’s hard to acknowledge. But it's a big part of us, we all have it, and accepting this and getting to know it can be a big step forward in acceptance and it’s very empowering.
Jung wrote in Psychology and Alchemy:
“There is no light without shadow and no psychic wholeness without imperfection.”
When we deny the shadow we aren't accepting ourselves, if we can't do this how will we ever move forward? There are many benefits to delving into this side including our personal relationships and health. As we discover, learn and let go of the baggage we have buried for too long it inevitably lightens the load, we can relieve unconscious stress and tension which in turn helps our overall health.
My acceptance levels change frequently as my health changes frequently. Some days I can barely move and am in a huge amount of pain, other days I can do housework and go for a walk. The difficulty comes when I have a good period for a few weeks and start getting used to it, I start remembering what life was like when I didn't have to assess every step I take in case it causes a flare later down the line.
As time ticks on I may start thinking just maybe I'm getting a little better and I start building a bit of hope but then it comes crashing back down. And so the journey to acceptance starts again, not as long or hard as the first time but it still takes a bit to say ok this is still here what can I do to make the best of it now, how can I recover from this flare?
One of the hardest lessons for me was that I can't be reliable enough to share a horse, let alone own one. I've tried a few times but it doesn't work, my daughter has to come first and there's not much energy left after that; sometimes there's nothing in the tank for her either and then the guilt really kicks in. ‘Mum guilt’ is the worst, but so is the guilt of feeling like you put a lot on other people, like what I put on my parents who pick up the slack with the care of my daughter.
I believe to find some sort of acceptance we also have to accept what we’ve lost, to allow ourselves to grieve, we can't move on to acceptance until we have worked through that process, so each time we experience a new loss that grief/acceptance cycle starts again.
Grief is the way we process a loss we had no choice in. Grief can also bring other emotions like sadness, anger and vulnerability because of that lack of control in what we've lost. Is it any wonder chronic illness often leads to depression.
Deborah Morris Coryell says:
"To heal grief we have to learn how to continue to love in the face of loss."
These words really resonate with me as it was in finding a new love that allowed me to grieve much that I had lost.
And finally, I come to guilt. My guilt normally revolves around feeling I've not done enough with my daughter, putting too much on other people because I can't do what I should be able to and letting people down. Realistically I know none of this is my fault. I do all I can to keep my health as good as possible but it's never enough.
Brenè Brown wrote:
"Guilt is holding an action or behaviour up against our ethics, values and beliefs. We evaluate that behaviour (like cheating) and feel guilt when the behaviour is inconsistent with who we want to be."
This also resonated with me. I want to be the mum who has the energy to chase Grace around the sofa a million times, to not be putting extra pressure on my parents who should be enjoying their hobbies in their retirement and I want to be that friend who will always be there ready. My health stops me from being this person and so the guilt kicks in. I need to accept that it’s just the way it is, I am who I am, nothing is going to change that; but accepting it will make it easier to be me.
Fortunately I am aware of all these feelings, what they mean and have ways of processing and eventually accepting but that doesn't mean it always works, and when it does it can be slow. It's not easy and anyone living with a chronic illness will be facing the same daily emotional struggle.
Some of my tips for dealing with unwanted feelings:
Talk: Know which friends and family will be there no matter what and don't be afraid to be open with them.
Seek therapy if needed - it can help you recognise and process unhelpful feelings which in turn may help your health. If one therapy or therapist doesn't work for you it's ok to try something and/or someone else.
Investigate and allow the shadow, make it your friend.
Question what you are feeling, why do you think you feel it, can you change the way you think about it. CBT counselling may be useful for this.
Learn to recognise your triggers and accept them, know the feelings will pass again in time.
Learn mindfulness meditation as a way to connect in with yourself and allow physical and emotional feelings to pass.
Make a list of what makes you happy that's within your capabilities. Set goals to do these things whether it's the next day or a year’s time. I do a 5 year plan with dreams, hopes and goals! Don't be afraid to ask people to help you with achieving them.
Learn more about each of the feelings, what messages do they carry, do they feed back to a different emotion underneath. Look up “Emotional Message Chart” by Linda Kohanov. It’s a really good guide on what different emotions can break down to.
Make lists of what you are grateful for, no matter how small.
Try something new that doesn’t use much energy – so far I have tried knitting, jewellery making, drawing, felting, paint by numbers, colouring and Fimo modelling.
Eat chocolate, or whatever treat you enjoy!
Instagram and Facebook: Kathryn Says Website: www.chronicwarrioress.co.uk
Full post reading by Jenni Pettican