Each month a fellow blogger (A Chronic Voice) hosts a ‘Link-up party’. I have wanted to take part for a long time but ill health restricts how much I am able to do. This month I was determined to get involved. Let me explain what a ‘link-up party’ is:
It is a monthly get-together for anyone with a chronic illness. An opportunity to share, to listen, and to learn from one another. It’s a great way to provide insight into life with chronic illness, from many different points of view. A Chronic Voice provides 5 writing prompts each month, and we use these prompts as inspiration.
April’s prompts are: Tiring, Educating, Receiving, Giving and Quieting.
If you would like to find out more about A Chronic Voice’s link-up party’s and read other contributions please click here.
Welcome to my blog
For those of you that are new to my blog, welcome. My name is Jo, I’m 44 and I live in Norwich UK. I live with numerous chronic illnesses and mental health issues including; ME/CFS, Fibromyalgia, osteoporosis, IBS, anxiety and panic attacks, depression and migraines. I write honestly about my experiences living with chronic ill-health and do what I can to raise awareness.
Living with chronic ill-health is not just tiring, it’s exhausting. But when you add everyday ‘muggle’ health issues like a cold, sickness bug or an infection, the exhaustion we face is amplified.
Chronic illnesses create many challenges and it often feels like we are in a constant battle with our body’s, and just staying afloat seems like a monumental task.
The past fews weeks have been particularly tiring for me. Dental problems have caused pain and disturbed sleep. I had a tooth extracted and I’m now on a second course of antibiotics for a gum abscess (on a different tooth). I also had my osteoporosis injection which I have every 6 months, my body normally tolerates this quite well, but this time round it floored me. And just because my body felt like I didn’t have enough to deal with, I got my period for the first time in 5 months. It lasted over two weeks and was so really heavy and painful.
So, it’s been a tiring few weeks. I feel like my body is betraying me and I’m feeling rather sorry for myself. The pure exhaustion I have felt has been overwhelming. Living with chronic illness is hard enough, so the addition of these extra challenges has pushed me over the edge, and I’m struggling to cope
The pain, infection, fatigue and antibiotics have all aggravated my ‘normal’ symptoms and I’ve crashed hard. Quite how tiring fighting this infection has been, has come as a complete shock to me, but it does make me appreciate the positive improvements I have made over the last few years. Only 3-4 years ago my baseline was this low, probably lower.
The added anxiety caused from not knowing how long I will be this ill for is also extremely tiring. People often overlook mental health, but stress is exhausting.
It’s hard not to let setbacks like this knock your confidence. Fear and frustration also play a big part. How long will this crash last? Is this my new baseline? I have so much I want to do but my body will not allow me.
These fears are something everyone living with chronic illness can relate to, I know I’m not alone. There’s also a temptation to self-blame. When illness flares, whatever the cause, we sometimes berate ourselves for getting sick; “If only I took better care of myself”. But I am slowly learning to remove self-blame, and to be kinder to myself.
I have thought a lot about this particular prompt: Should I write about educating the public about invisible illnesses?, or maybe write about my passion for reading and educating myself about whatever topic has grabbed my attention this month.
But I eventually decided to write about my personal journey educating myself about self-compassion. This is something I have spent a lot of time and energy over the last 12 months, and it was time well spent.
I have had a lot of negative thoughts and emotions running circles in my mind over the past few years, and I wanted to find ways to combat these thoughts, and the concept of self-compassion kept appearing. I was never taught about self-compassion, as a child or as an adult, so it was an alien concept for me. I didn’t really know what self-compassion meant, let alone how to execute it.
But through reading, educating myself and absorbing these vital messages, I was able to start to put into practice what I so desperately needed; Self-love, self-care, self-forgiveness, self-compassion and self-kindness.
What exactly is self-compassion? It’s a simple concept really; Instead of mercilessly judging and criticising yourself for various inadequacies or shortcomings, self-compassion means you are kind and understanding when confronted with personal failings – after all, who ever said you were supposed to be perfect?
Self-compassion simply means treating yourself with the same kind and non-judgmental manner that you would treat someone whom you love. Learning this has been liberating for me. It has given me the space I need to heal. It allows me to rest when my body is broken, rather than fighting to keep going or berating myself for not being stronger.
Through educating myself about self-compassion and forgiveness, I have also opened myself up to deeper connections with other people.
Giving & Receiving
So with this is mind, I have taken the time, while I struggle with additional health challenges, to show myself kindness and practice self-compassion – this is my gift to myself during my flare. My gift of kindness, my gift of rest.
I have combined the ‘giving’ and ‘receiving’ prompts because when we give ourselves a gift of kindness, we also receive love and understanding in return.
By allowing myself to rest, and avoiding the self-blame tactics I used to direct at myself, I have been able to concentrate the little energy I have on more positive thoughts and activities.
I have to admit, I’m a bit late in discovering self-compassion and the vital role it plays not only with mental wellbeing, but also in physical health. I’m 44, and for the first time in my life I’m making myself a priority. Now I have discovered self-love I can see how important it really is.
I’m finally at a place where I don’t beat myself up over every little mistake. I no longer blame myself for being so ill, and I’m finally starting to love the person I am, in spite of my many flaws.
A few months ago I wrote myself 10 Self Care and self love promises. I turn to these when life gets too much, or when I find myself drifting back to my old way of thinking. Number 1 & 9 have been of great comfort the past few weeks;
1. For the times when my body and mind actually allow me to rest;
I will comply without beating myself up about all the things I “should” be doing. Whether this rest period lasts for hours, days or weeks, I will listen to my body and respect it’s need to restore and repair.
9. For the times when it feels like my body is betraying me;
Instead of focusing on the many ways my “broken” body has let me down, I will thank it for keeping me alive through everything I have thrown at it. I will focus on what I can do rather than what I can’t, and remember how far I’ve come.
Because I’ve had to force myself to rest more over the past few weeks, inevitably my brain has been more active and agitated. The frustration of not being well enough to write or to interact with my friends as much as I would like, and the fear of not knowing how long these additional symptoms will last, has lead to increased anxiety.
My go-to method for quieting my mind is mindfulness, but I also enjoy listening to audiobooks and relaxing music.
Mindfulness doesn’t have to be complicated or hard work, it’s simply about taking time out from our busy lives to look after our health. It’s about accepting things as they are. It’s about being curious rather than judgmental or fearful.
I find that by focusing on the present through mindfulness, rather than worrying about the future or even the next 5 minutes, I can calm my overactive and anxious mind. In recent studies mindfulness meditation has been shown to be more effective than antidepressants and it’s also helped patients cope with chronic pain and other physical illnesses.
I like simple breathing meditations but there are many ways you can practice mindfulness, and it can be incorporated easily into all aspects of your life.
For me, it’s been a valuable tool for coping with my overactive mind, and it’s especially helpful at times when my physical health is at its worst.
I have always been a book lover. I love nothing more than immersing myself in an imaginary world. Reading is also a great way to quieten an anxious mind. When my ill-health prevents me from reading a physical book, I turn to audiobooks. Escaping to a new world without the stress and pain of my actual life, is one of the best ways I know to improve my mental health and calm the anxiety caused by my physical ill-health.
Music has always played a big part in my life, but over the past few years my hypersensitivity to noise has worsened, dampening my enjoyment and my ability to listen to music. I used to love an assortment of music styles including Rock, but sadly I’ve had to let this go, for now anyway. But this doesn’t mean that music is no longer part of my life, I just have to be a bit more selective about what I listen to, and limit my exposure to it.
Music can have an incredibly calming effect on me, and for 20 minutes every night before I go to bed I have the same ritual – I have my bedtime playlist. As someone who has suffered from insomnia all my life, I find this bedtime ritual invaluable. It allows me to wind down, relax and quieten my mind – making sleep possible.
The past few weeks have been particularly challenging for me, but without the coping strategies I have established in the recent years, and my new found self-compassion, they would have been a lot tougher. If you too are facing a difficult time, please try to be kind to yourself, please allow yourself time to rest without judgement. Your body needs to restore and repair. Take care x
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