Well, my friends, it’s a place we never really believe we ourselves will ever hit the time when you have been ill for years or in my case a decade. I spoke about all the things I learnt recently and I wanted to share the positive as well.
I have had some major health struggles for over ten years. I have survived and grown from a child to an adult but also grown into who I am supposed to be.
I have found that there are times of joy wrapped up within the other less desirable parts of life with M.E/CFS.
I have a list of the things that have made me endlessly happy within these years and some of them will be cheesy cliches but that’s okay! There isn’t a rating in how they are numbered I wanted this to be an organic blog post.
1. Fresh snow. Even if I haven’t been able to play in it for a few years the complete difference it makes to my view is enough to be enchanted with the new white surroundings. Hello, Narnia in your back garden.
2. Family ( told you it would be cheesy) From when my sister ran around the house with me in my new-to-me-wheelchair and made me fear my life but dried my tears to my brother’s quiet hugs when needed and his ever constant education on what the youth are doing these days. A family isn’t chosen but you can choose to embrace it fully and to build and invest. I couldn’t be without them even if we all are an eclectic bunch. They have been my strength and reassuringly constant presence within the dark and good times along the way.
3. All my online friends and bloggers! I can’t really leave my house much so my socialising is done via the interwebs. I’ve made friends all over and have a group of people who understand what it’s like. So thank you to all who reach out to me or offer support to the blog or to me on Instagram.
4. Fresh flowers. They do die quickly but I love to have flowers and I’m lucky that Baloo surprises me with them. It makes me happy to have natural beauty in my home.
5. Tidying my space. Now this takes energy and it’s more of a goal than reality but after watching ‘Tidying Up’ on Netflix (highly recommend!) I started to find peace in folding and finding the joy of being organised and tidying. Nearly all of the time my room is a mess but I try to make my environment peaceful.
6. Quiet. There is a beauty to stopping and listening to nothing and feeling peace. When I was away in Madeira last summer I loved waking up before the sun and seeing the sky go from inky to streaks of blue and pink. I enjoyed the moments before people were awake and the peace was comforting.
7. A Bath and freshly washed hair. Is there anything better than feeling clean and a somewhat refreshed version of yourself? Bonus points if clean bedlinen and PJs are waiting for you when you’re done. The bath is my oasis in my day to day as it helps my pain and I’m warm. Does life get better than that?
8. When people of the public show kindness or humility to me when I’m out and about in my wheelchair. It saddens me that is not the norm for me when I go out once a week but it makes my week. It could be as simple as moving out of my way without me asking or treating me like any other person. It makes a difference to not feel invisible.
9. Love. It’s cliche and ever so easy but love doesn’t mean everything will work out it means you have back up for every event. Family friends and partners are what matter in life. They can’t and don’t fix everything but they are there every step of the way. I found love because of M.E/CFS and that is a strange thing to unite us and to be present in our relationship but I’m so thankful for this.
10. Finding Me through M.E. Now most people will have changed a significant amount in a decade but I feel like I found who I was meant to be through the M.E. My eyes were opened up to some of the injustices people face and the way the world is when disability is a constant thought but also I found myself and lost myself and am putting a stronger me together now. I think it’s safe to say someone out there just won’t like you and there is nothing you can do about that besides handling it with grace. Be you and don’t give people influence over your life if they aren’t people you know love and respect you.
I was nervous to put this together because I remember in the months after my diagnosis finding a blog post written by a lady who had M.E for over 10 years at that point. I was so scared of it and feared the longevity this illness could have in my life.
I wouldn’t say it got easier to deal with either, you adapt but never fully grow comfortable with the illness as far as I’ve found. I wanted this blog post to be positive about being ill for ten years even if the fact I’ve been unwell for ten years isn’t really a party event in my life. It has taken me months past the anniversary to be able to post this. That is probably is rather telling.
What have you learnt or what has made you happy during your struggles?