Updated 15th February 2020
I turn 45 this week and my birthday has thrown up a whole mix of emotions. It’s a brutal reminder that I have lost yet another year to ME/CFS.
I live with a severe form of ME/CFS. I’m housebound, mostly bedbound, and my life is greatly restricted due to this debilitating disease.
The forced isolation I find myself living in means I feel an odd disconnection from the outside world. It’s like my life is on hold, like time is frozen. Rather than progressing, I’m forced to relive an almost groundhog day existence – each day almost identical to the next.
But, of course, the world outside goes on without me. My friends and family’s lives continue unobstructed, unhindered and unaffected by the ME monster.
It feels like I am being held hostage by my condition and I’m defenseless to stop these wasted years passing me by. When you’re ill, birthdays are a reminder of all the things you’ve missed. Time you can never get back.
❌Another year spent in isolation from the outside world
❌Another year unable to do the simplest tasks
❌Another year where I’ve been unable to do the things I love
❌Another year spent in pain
❌Another year being denied help from medical professionals
❌Another year without my independence
❌Another year spent without the social contact I desperately crave
❌Another year unable to follow my dreams
❌Another year relying on other people’s care and generosity
❌Another year has passed me by and I continue to live my life from my bed
With each passing year my hope of making a recovery diminishes. This isn’t me being depressed or pessimistic, sadly it’s my reality. But I refuse to give up. I refuse to let ME/CFS steal my hope.
A place of acceptance
Over the past couple of years I have come to a place of acceptance – it hasn’t been easy. I now give myself permission to embrace the truths of my health issues – without guilt or self-blame.
Rather than battling against my illness and my own body, I have decided to make the most of the life I have. I refuse to let any more years pass me by desperately wishing I was well. I refuse to wait until I am well before I start to live my life. Instead I will find ways to enjoy my limited life, while I patiently wait for my body to heal and the medical community to catch up.
Another birthday, another year survived
Instead of focusing on what I am missing out on, and my lost years – this year I want to celebrate my achievements. This year I want to acknowledge my victories. This year I want to shout from the rooftops: “I survived!”
This year wasn’t “lost” to ME/CFS. This year was another year where:
✔Despite ME/CFS I continued to make improvements in my health, I am winning the battle, even if the progress is slow
✔Despite ME/CFS I have spent precious time with loved ones
✔Despite ME/CFS I have laughed
✔Despite ME/CFS I made lots of new friends online
✔Despite ME/CFS I sat outside for a few precious moments during the summer
✔Despite ME/CFS I have been able to express myself through my writing, and hopefully touched other people’s lives too
✔Despite ME/CFS I continue to raise awareness and hold onto hope of a better future
✔Despite ME/CFS my life is worth living
✔Despite ME/CFS I will not give up on me
✔Despite ME/CFS my life is still full of hope
✔Despite ME/CFS I achieved so much
✔Despite ME/CFS I survived!
Despite ME/CFS I will continue to live my life
So, despite ME/CFS I will continue to live my life. I will continue to embrace the unpredictable mess that is my reality. I will take one day at a time. I will choose my battles and let go of the ones that serve no purpose except to exhaust me. I will celebrate even the smallest achievements. I will laugh when I can and cry when I need to. I will learn to accept what I cannot control and work my hardest to change what I can. I will appreciate each day, and each year that passes, because my future is so uncertain.
I’ve come a hell of a long way and I’m bloody proud of that. Yes, I would much prefer to be living my life outside in the real world, without the limitations placed on me by my ill-health. But, chronic illness works in mysterious ways and for now, I’m making the most of what I have.
For my birthday this year, and for years to come, I will take the opportunity to reflect on all that I’ve made it through. I will embrace and celebrate my life, even though it isn’t what I hoped or dreamed it would be – after all it’s my life and the only one I have.
If like me, you live with a chronic illness and find birthdays a depressing reminder of what you are missing out on, your lost years – please know that just by surviving you are achieving an incredible feat. Please find a way to celebrate all your achievements and victories, however small. Please know you are not alone.
I know life is hard, but it is possible to live a worthwhile life with purpose and meaning despite chronic illness. You are incredible, never forget that. Take care x
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Well people do not appreciate their health, often we have to get very sick before we realise it. If we are lucky and can manage to avoid diseases, it will catch up eventually as we age.
I have been very lucky and reading your posts Jo, truly makes me very grateful, thanks for helping me to be greatful for the simple things in life. You can count on me as an online friend who truly wishes for you to get well, your positiveness will get you through.
There must be thousands now who learn lessons about life from you, that’s your calling although not one you choose. We all are here to give service to others, your generosity is by being vulnerable and describing your daily struggles you are like a lotus flower blooming despite the muddy waters underneath.
You say such kind things Janice. Thank you so much. Your support gives me the strength to keep writing, and I appreciate every word. And I most definitely count you as one of my online friends. Take care x
I can relate to this so much. I feel the same at each birthday, I find them painful. It wasn’t till last year that I was able to see what I had actually achieved that year, for once, instead of just another year lost; as you have. And it’s not pessimism, it is a reality and one anyone in our situation would have to face. You should feel proud to have recognised all of the amazing achievements you’ve made this year. You’ve also written some amazing blog posts!
Thank you for your kind words Amy 💙
Acknowledging victories, no matter how big or small, is so important. Happy birthday, Jo.
Thank you Elizabeth 💙
Beautiful post, Jo. I’m so sorry you’re so isolated by your ill-health, and that you’re stuck in medical limboland. Reframing your mindset can have an incredible effect on your overall health and you’ve flipped it around perfectly. Happy birthday!! 💕
Thank you Amanda 💙
Firstly, a huuuuuge (belated) Happy Birthday! I’m so sorry you’ve felt this way too, as I’ve felt like this for my birthdays over the past couple of years as my 20s have disappeared and I’ve felt, well, quite bereft about it all. Trying to change your perspective on it is hard, so I think you’re doing amazingly at instead looking at the things you have done, what you’ve survived, how you’ve grown. To look at your life and live it in the best way you can, even though it may not be what you’d wanted or anticipated, it’s the only one you have and you have to make the most of it because you deserve happiness, contentment and acceptance with it all. Lots of love,
Caz xxxxx
Thank you for your birthday wishes and kind words Caz. Take care x
Such an inspiring post. I can relate to everything you have said. I am struggling with acceptance; stuck in the cycle of grief & as a result I feel my health deteriorating. You have helped me to see how to find the light at the end of the tunnel. Thank you for sharing. I hope your birthday bought joy & I wish you all the best on your journey to better health. I hope this year you’ll enjoy more moments in the garden & that when you reflect back in another year there will be even more achievements to report x
Thank you Becca. I’m glad the post has helped. Acceptance isn’t an easy concept, it goes against our instinct to fight. I have written a post about it if you would like to read it. Take care x
https://www.ajourneythroughthefog.co.uk/2018/03/acceptance-does-not-mean-giving-up/
I also have chronic fatigue with fibromyalgia. Fortunately I am retired but I have had this for over 30 years. It is so essential to honor yourself and feel good about yourself however so small I do get out of the house but it usually is very draining and painful. Sleeping is hard unless I take ambien. I do think we will find a cure one day and hangon to that thought. Please email with any new research Take care my friend Di
Yes, it is essential that we honour ourselves and feel good about ourselves. I’m glad you are able to get out house even though it’s very draining and painful. Take care
I love how you’ve written this post. It’s clever and inspiring, turning the ‘Xs’ in to ticks. It’s not easy coping with our health conditions and pain but you l’ve shown that it can be done. And a belated Happy Birthday 😃
Thank you Alice
Hugs and happy birthday! It’s hard to think about what we have lost, but I love that you were also able to find all the ways that you survived. My birthday wish for you is that you know how important you are to me and so many others.
Thank you Cynthia
Jo, it seems you have just described so many of us and how we feel, happy belated birthday and I am pleased you enjoyed it in a way you could. xx
Thank you Rachael
This post really resonated with me Jo, as I just celebrated a birthday too. Thank you for sharing your insights!
Happy belated birthday Cassie
It’s not until you are faced with hard times and chronic illness that you appreciate the small wins. Happy Birthday!
You’ve got this.
Thank you Gemma
Dearest Jo, I could weep with the level of respect I have for you. We don’t know each other yet you touch something in me with your candidness and your driving energy and spirit. I too have a birthday coming up, in my case 55! Jeezo where did the time go? I suppose it’s very different for me in that I now fear the coming of old age and all that brings in addition to CFS/Fibromyalgia. I don’t even know for sure if I have one or the other or both as my GP is so reluctant to diagnose. All I know is there are days when I cannot move out of bed and others when I could weep from unexplained, soul deep pain. I’ve been very lucky recently as my symptoms very suddenly after 2 years, subsided to the point I almost felt ‘normal’ again. It was wonderful and o felt so blessed but oh the almighty depths of despair I felt when the ‘crash’ came, again and again and again. It’s like being told someone died all over again, as if somehow I’d forgotten what it felt like to be so unwell.
However, on reading your post I feel myself rallying to the positives that are still around me and knowing I’m not alone in this, (for as we know that’s one of the biggest loses, the loneliness from being socially isolated) helps immensely. Thank you for taking the time to write for us all Jo. Much love xx
Thank you so much for your kind words Elaine 💙