Another birthday, another year lost to ME/CFS

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I turned 44 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, virtually 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

So 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 won the battle to have a smear test at home, and hopefully paved the way for others to get access too

✔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.

So 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

For more personal stories, reviews, news, inspirational quotes and in-depth discussion, please head over to my Facebook page.

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14 Comments

  1. 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.

    1. 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

  2. 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!

  3. 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!! 💕

  4. 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

  5. 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

  6. 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

    1. 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

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