Sheryl from A Chronic Voice, as well as sharing her own stories and lessons with chronic illness. Sheryl is an excellent support to other bloggers and writers living with illness and chronic pain. One such way is through monthly link-up parties whereby bloggers and writers share their stories through given prompts. Because March is also the month where my birthday falls, I thought I would use this month’s prompts to discuss the impact of celebrating birthdays when living with chronic illness.
Failing at Life Because of Illness
Failing: Noun. An act or instance of failing; failure.
2. A defect or fault; shortcoming; weakness
March is a busy month in the household, with both my Mum and I celebrating birthdays during these thirty one days.
Like many living with a chronic illness, birthdays, although as much as they are often enjoyable they can also prove to be bittersweet.
"When living with chronic illness, birthdays can be bittersweet as it is a reminder that we have lost another year to it." Share on XBirthdays can be a time of reflection. To reflect on the year since we celebrated our last birthday. And reflecting on life, that we have led since our birth, and the life we thought we thought we would have had. As such, it is often a painful reminder that we have lost yet another year to chronic illness.
Chronic illness is like a kidnapper, holding you hostage, unable to escape. It forces you into isolation, with limited access to the outside world. Time has frozen, and our lives are stuck on pause while the outside world moves fast and everyone else’s life continues unsilenced and unaffected by illness’s grip.
"Time can often feel it's frozen. That our lives are stuck on pause while the outside world moves fast, and everyone else's lives continue unsilenced and unaffected by chronic illness." Share on XAs such, we can believe that we are failing. It feels like we are failing; that we are a failure because of everything we are unable to do and failing because of the lack of independence and the need to be reliant on others.
Our minds falsely
Succeeding Past The Limitations of Chronic Illness
Succeeding: Verb. To thrive, prosper, grow, or the like
2. To come next after something else in an order or series
However, perhaps we need to change how we view our circumstances.
Instead, of regarding birthdays as a reminder of what we have lost because of chronic illness, perhaps we need to celebrate another year of surviving. That we are succeeding despite the limitations that chronic illness enforces on us.
To acknowledge the successes and everything that we haven’t lost because of our conditions. Often the progress seen when living with chronic illness is slow and can often feel as if we are not making any progress at all.
"We are succeeding over pain and illness whenever we triumph over the limitations they impose upon our life. We are taking control back from chronic illness whenever we achieve anything despite the constraints they inflict." Share on XBut the truth is, we are succeeding over pain and illness whenever we triumph over the limitations they impose on our lives. Whenever we achieve anything despite the constraints that it inflicts we are taking back control chronic illness already has.
We are succeeding when we decide to make the most of the life we have now instead of wishing we were well, or waiting until we are well until we start to live life again.
This year I succeeded over the neurological condition I was diagnosed with by going on another cruise, making the most of it despite debilitating and excruciating pain. Also, I overcame the anxiety and apprehension that the condition can cause to book a trip to the Harry Potter Studio Tour in London. At times, both were extremely difficult but was proof that I was living my life despite my diagnosis and was stronger than the hold it has over me.
Pausing and Reflecting on Life and on Getting Older
Pausing: Noun. A temporary stop or rest, especially in speech or action
2. A cessation of activity because of doubt or uncertainty
Taking a breath and reflecting on my life, it feels like life is pausing. On hold. It is although life is still the same as it was when I last celebrated my last birthday.
Still, I am persecuted by the same symptoms as last year: no improvement and no progression in other areas in my life. Another year passing, and so does the hope of recovering. When living with chronic illness, it often feels that nothing changes apart from the day of the week. It can feel that each day bleeds into the next, the debilitating symptoms the one constant. I desperately want to take back life away from pain and illness. Instead, I feel stuck and disheartened.
"It can often feel that nothing changes apart from the day of the week. It can feel that each day bleeds into the next, the debilitating symptoms the one constant." Share on X
When I pause and look toward the future, I do so with a sense of anxiety and apprehension. I fear whether there will be further deteriorations in the symptoms and my condition that will further erode the little independence I have currently. Wondering what life will look like, often wishing that I sometimes could see it in a crystal ball but worry what I will witness if I do.
"When I look to the future, I do so with anxiety and apprehension. I fear there will be further deteriorations in the symptoms I experience and that they will further erode the little independence I have currently." Share on XI try and not to dwell on the what ifs, however, and instead try and pause and appreciate on what I do have. To give thanks to loving and supportive parents, that do so much but ask for little in return. The friends in my life both in real life and those I have met online. To welcome and acknowledge the beautiful and heartfelt messages of support and thanks on my blog, and to recognise the impact my words has had on those who have read them.
Deciding on A Path To Celebrate
Deciding: Verb. To solve or conclude by giving victory to one side
2. To determine or settle (something in dispute or doubt)
As I sit in my bedroom, currently disabled by pain and weakness in my legs, and thus affecting my mobility, I am deciding on how to celebrate my birthday next week.
It is hard as anyone living with an unpredictable health condition will know, planning can prove to be extremely problematic. What will tomorrow look like for us?
"I am deciding how to celebrate my birthday…When living with a never-ending condition; however, it can be problematic as we have no idea what tomorrow will look like for us." Share on XHow will I feel on the morning of my birthday? Will the pain, fatigue and mobility problems be kind enough to me to allow me to celebrate as planned?
These are the questions that we are silently asking in our minds, but have no answers. There are no crystal balls that we can consult to help us decide on a particular path. If I were to browse my diary, so far most of the entries recorded are marked with a question mark. It is a symbol of the many unknowns of life with a never-ending illness.
"In my diary, many of its entries are recorded with a question mark. It is a symbol of the many unknowns of life with a never-ending illness, including our future capabilities." Share on XIt’s not only my birthday that falls during March. My Mum also has her birthday this month, and Mother’s Day also occurs in March. As a result, I am deciding not only what to buy as presents for both these occasions, but also how am I going to buy them. Do I currently have the energy and sufficient mobility to walk around and browse many shops? Or should I forego physically visiting stores and take advantage of the many benefits of online shopping?
Thriving and Not Just Surviving Life with Chronic Illness
Thriving: Verb. To prosper; be fortunate or successful
2. To grow or develop vigorously; flourish
When going through a flare, or incapacitating troubles associated with chronic illness, it can often feel that every day we are merely surviving. But we don’t want to endure; we want to thrive despite the numerous limitations that chronic illness brings with it.
"We don't want to endure and survive; life with chronic illness. We want to thrive despite the numerous limitations that they bring with it." Share on XBut perhaps it only feels that we are merely surviving. Perhaps our minds are deceiving us to make us believe we are just surviving. Maybe we are thriving despite what we are led to believe. We are thriving when instead of fighting against the restraints that chronic illness has, we embrace the unpredictability and mess of our new reality.
"However, we are thriving when instead of fighting against the restraints that chronic illness has, we embrace the unpredictability and mess of our new reality." Share on XTo thrive sometimes involves letting go of what we cannot control, and only worrying about the battles that we have a chance of winning. Thriving is celebrating the even smallest of accomplishments, and appreciating the sheer effort and courage it took to achieve them.
To grow and succeed is to appreciate every day, yes, even the difficult days, and give thanks to each year that passes, celebrating every birthday and milestone as often our futures are so uncertain.
"To thrive is to appreciate every day, yes, even the difficult days, and give thanks to each year that passes, celebrating every birthday and milestone as often our futures are so uncertain." Share on XI am continuing to thrive despite all of the limitations and difficulties that this neurological disorder places in my path. On this birthday I will take the opportunity to reflect on everything I’ve done despite constant and debilitating symptoms. I will celebrate making it to another year. And although this is not the life that I had imagined for myself, I am determined to embrace and celebrate the life I do have.
17 Comments
Thanks for sharing with such intimacy again, Rhiann. Birthdays can be tough, especially as we keep getting older! I wish you and your mum a beautiful month nonetheless, a meaningful one, at least, something you can remember 2019 by 🙂 Sending love!
Thank you so much Sheryl, it’s a wonderful opportunity to use your prompts to create more writing, it can sometimes be difficult to begin to come up with new themes and insights to write about but your prompts give us some new inspiration. Also wishing you a magical March and hope it brings nothing but great things for you! Take care xxx
Wow! Such an emotional piece very beautiful. “living my life despite my diagnosis” I think you’ve shown us all how resilient we are. Happy birthday to you and your mom. It makes a very good point not only do we have anxiety planning the celebrations but also on how we can get our hands on presents too without driving ourselves bed bound. Take care Rhiann have a magical manageable month x
Thank you so much for your lovely words Niamh! It’s a pleasure to meet you. And thank you, I am hoping it will be a lovely celebration for both my Mum and me! I hope you also have a wonderful and memorable March and look forward to visiting your blog again! Rhiann x
Hi Rhiann have you managed to pull off the celebrations or preparation yet. I thought of you as I’ve been invited to a friends birthday and I am already in a tizzy how to get there and leave if it gets too much lol I hope yours went well if they’ve been and gone x
Hello again Niamh, yes, my birthday has now been and gone. It was a quiet day but plenty of lovely moments too managed to make it out for a meal the night before and went for a birthday breakfast in a favourite cafe of ours with Mum and her friend. Wasn’t much but, it was more than what I’ve been able to manage in the past. I really hope you manage to make it to your friend’s birthday celebrations. Best wishes, Rhiann x
Aw I’m delighted you got to mark it in your own beautiful way.its hard to put our stamps on it some years but you managed quite a lot. Especially pushing yourself for a follow up birthday brekkie too. Hope all your food was scrumptious you deserve it. Happy birthday month Rhiann x
Happy Birthday to your mum for hers. What date is your birthday next week lovely?
I think you’ve worded this really well, especially with birthdays being ‘bittersweet’. I find the same not just with birthdays but New Year, too. The whole reflection aspect, seeing the situation you’re in and how you’re feeling now and you can’t help but look at how things ‘used to be’ or where you thought your life would be by this point. It can be really tough. As you say, it’s a painful reminder of losing another year to chronic illness.
That change in perspective is so important and can make a big difference. Seeing the success over pain, the survival, the ways that it’s actually made us stronger and changed us for the better (whether that’s being more compassionate and empathic, or the ways we’ve ‘met’ a new tribe online and through blogging).
Not knowing how we’ll be on any given day makes it challenging, so I feel for your predicament over celebrating your birthday. Trying to not have things too formally set, a little more flexible, if possible can help ease the pressure. I love this – “We are thriving when instead of fighting against the restraints that chronic illness has, we embrace the unpredictability and mess of our new reality.” It can be so hard to do, to get to that point of acceptance and embrace it all, but that’s where freedom lies.
A beautiful, thought-provoking post that you have written so incredibly well.
Caz xxxx
Hello Caz, thank you for taking the time to comment, and for your lovely words, they mean a lot after spending a lot of time writing it! How are you lovely?
My birthday is on the 15th, so this Friday now! Still not sure of what to do, might go out for lunch on the day but will be looking forward to watching Comic Relief in the night!
I hope you are well! Take care!
Rhiann x
Hi Rhiann,
Thank you so much for sharing! Happy birthday! Reflection can be tough, but it’s possible to flip the script a little and focus in on what you have found/learned/succeeded with! My birthday is in January, so I spent much of the month reflecting in various ways. I hope you are able to enjoy the day, and enjoy mother’s day and your mum’s birthday as well!
Invite the folks you want to, go eat at a favorite place(or explore and try something new!), just know that you deserve to enjoy every minute of your life, including your birthday!
Thank you Alison, what a brilliant thought about flipping the ‘script’, I know it can be a great strategy when feeling down and it’s definitely something that I could work on! Thank you for sharing! Take care! xx
Hi Rhiann,
Your entry this month is beautiful. I wish you both a happy birthday and wanted to say that you are not alone in your thoughts about becoming a year older with an incurable disease. I ‘celebrated’ my 44th in January, but I felt the same as you – it was bittersweet.
Wishing you all the best this month and in the months to come.
Thank you so much Carrie for your kind words and for reaching out. I hope you enjoyed your birthday regardless! Take care, Rhiann x
Hey Rhiann
Thank you for sharing your thoughts! I can relate to the struggles of trying to celebrate your birthday when you have a chronic illness because life is so uncertain. I’m turning 23 this year and while all of my friends are busy thinking about which careers they will choose after uni, I find myself worrying if I will be well enough to work at all. Despite all the pain of living with chronic illness, life is still full of beautiful moments to cherish 😀 Wishing you a happy birthday and I hope it will be a low-pain one 🙂
Thank you Charis, I am so glad that you continue to be positive and are able to enjoy and appreciate the beautiful moments despite chronic illness. Thank you for visiting! Rhiann x
I feel this so hard. My birthday has always been my most favorite day of the year. Now it’s hard to celebrate, especially when I can’t throw myself a party or even go out to eat, and it seems most people have forgotten me.
Happy birthday, by the way!
Thank you for reading and sharing your experience. I’m really sorry that birthdays have become so hard. I hope that you can find some little way to commemorate the day and enjoy it with those you love and who have stuck around. Best wishes, Rhiann x