CLICK HERE to submit your own entry, and to read about what others are up to as well!
I feel like I’ve been drifting upon a wide, open ocean for the past few years. I’ve neither been swept away by furious storms nor drowned yet, but I don’t seem headed anywhere either. I don’t quite know what to do with my life or myself from here, and feel like a rabbit caught in the headlights. I daren’t rock my little boat, for fear of returning to the old days of constant flare ups and endless pain. So this is sort of a good state to be in too, if you get what I mean.
As I reflect upon this prompt, I’m thinking that I’d like to dedicate 2019 in honour of my youth. There are certain traits that I’d like to rekindle, or at least remember, namely curiosity, daring, strength, resourcefulness and independence. This will no doubt invite more turbulence as well, and while I fully accept that this version of myself is no more, that isn’t to say that she never existed. I’d like to channel her spirit this year, and to remember what it feels like to be alive once more.
(Find out more about these ‘versions’ in this article: Me 1.0 is dead. What will I do with Me 2.0?)
Sleep plays a huge role in inflammation, damage control and the maintenance of our health. I’ve never been a good sleeper, always staying up late for no good reason, with ill disciplined sleep hygiene and messy routines. I’m aware that a good night’s sleep doesn’t start right before bed, but from the moment I wake in the morning. Every little thing I do or consume, and the timings, add up to make an impact.
I hope to establish a better sleep routine this year, which will be a challenging feat for someone like me! I know that I’ll slip up many times, but I’d like to keep trying. My plan is to go to bed early, like a few hours before actually falling asleep, because there are certain things that I only do in bed. For example, I check my Twitter only once a day at night in bed. I can get over a hundred notifications, and it can take me up to an hour going through them. I’m aiming to fall asleep by 00:30 every night, which may sound late to many of you, but I do need a realistic starting point! The primary aim is consistency, before making more ‘ambitious’ changes.
To be human is to possess certain fears, and my biggest one is extreme pain. Whilst I’d like to chisel away at these fears, I don’t want to say that I’m ‘getting out of my comfort zone’, because I like that comfort. As someone who’s chronically ill, life can feel like hell overnight, so it’s especially precious to have some comfort to fall back on. I’d like to keep it as base of sorts – like those catching games we played as kids with bases you could go to, either to recuperate or to avoid danger.
I would like to build up both my physical and mental stamina, so that I can venture out from my comfort zone bit by bit, further and further. I will need to make conscious decisions and put in effort in both of these areas, in order to achieve this. Self-awareness and willpower are tools that I will have to retrieve from the toolbox and sharpen. They’re in there, but just a little blunt from lack of use.
I will need to force myself to make those life-changing decisions, and bear the consequences, whatever they may be. I need to break out of this mental block, but I don’t wish for these fears to break me further either. I will need lots of patience and judgment calls in order to maintain that precarious balance.
As mentioned above, I need to strengthen my mental and physical stamina once again. I took a big hit the year I had Tuberculosis, which triggered major flares one after the other, and messed my brain up pretty badly. I haven’t held a proper job since then either, so my self-esteem needs some working on as well. I have also come to realise that a lot of my self-esteem is tied to productivity and work, so that’s something I need to unlearn. My brain needs to undergo retraining, to adopt more healthy and useful mindsets.
Despite everything that I’d like to work on this new year, I also need a few ‘rest days’ where I’m allowed to break my own rules. It can be discouraging when you keep spiralling downwards and away from your goals due to circumstances out of your control, or even within.
Pockets of time to regroup and self compassion are necessary for moving forward, even if they may be ironic. For example, staying out late to party as opposed to sticking to that new sleep routine. But I think it’s good to mix things up every now and then, as life isn’t cut up all nice and square anyway.
I will fall – and many times at that – over the year, but I need to remember to allow myself some grace, especially on the days when depression grips me, and convinces me that I have failed and am a failure. I will need the discipline to just lay low, and see it though one more time, all while allowing myself full access to hope, kindness and love.
Thank you for reading, and I hope to read your responses for January’s prompts too! Click here to submit your own entry, and to read about what others are up to as well!
Read More: A String of Bad Days (and What Happened When That Good Day Finally Came Along)
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I’m revisiting some of your older link-up articles today and was surprised to see I hadn’t commented on this one! It’s nice to be able to go back and see what you’ve written about and how you worked things into your future posts though.
How has your commitment to sleep improved over the past two years? Were you successful or has it stayed where it is?
Hi, Sheryl!! I am intrigued by your answer for Dedicating. “There are certain traits that I’d like to rekindle, or at least remember, namely curiosity, daring, strength, resourcefulness and independence.” I’m not sure that you’ve really lost these traits, though I’m sure it feels that way. You “dare” to put your story out there every week with your posts. You show resourcefulness as you collect helpful information for your own health journey and share it with us. If you were not curious you would have nothing to say on your blog. You’ve had near death experiences and yet here you are encouraging us and keeping on going day by day. That looks like strength to me. Maybe our younger qualities adapt and grow as we do. They don’t look the same, but are still with us. Just my two cents worth.
Hi Kathy, thank you for wise, motherly input 🙂 You are right – I suppose our traits do adapt and mature as well! ‘Adventurous’ could mean something entirely different to an adult as compared to a teenager 😉 And for the blogging stuff you mention in your comments – I actually don’t feel like I’m really ‘putting myself out there’ even though I am, because I don’t quite have a fear about it as others do (we have struggle with different issues). I guess I miss the spontaneity and daring of the literal nature sometimes 🙂 But thank you dearie for such a thoughtful reply. I hope you are doing well! xxx
Your comparison to drifting on an ocean was such a perfect way to describe life with a chronic illness! I am really not sure where I am headed and I am scared to rock the boat in case I go backwards. I also relate to your sleep patterns! I don’t really have a routine because I am at university and I am definitely a night person. Mornings can be difficult for me due to my health but I seem to feel better in the evening. Maybe that’s why I prefer to stay up late 🙂
Happy new year! I hope this is an amazing year for you x
Hi Jennifer, haha it does feel a lot like drifting aimlessly a lot of the time, doesn’t it? 🙁 I am glad that you could relate on so many points, and good to know I’m not the only one struggling to be healthier despite illness :p I am so bad with my evening routines, even though I know I need to improve it!
Happy new year to you too. Sending hugs! x
Hell again Sheryl, and a very Happy New Year to you. I hope you had a lovely and restful Christmas celebration.
Like you I need to strengthen both my physical and emotional health or as you eloquently phrased it, stamina. I find that when experiencing a flare, or another deterioration in symptoms, it impacts on my emotional well-being. I become overcome by helplessness and frustration and let the littlest setbacks push me into a depression. I hope I can work on becoming more resilient and emotionally stronger.
Thank you for once again providing such inspiring prompts, I found that these month’s words allowed the opportunity to reflect on the previous year as well as being able to use the lessons to look forward to the year ahead.
Hi Rhiann! It was good for me, hope yours was as well? 🙂
I understand as I’m struggling with it myself. It’s easier to become depressed than not when you are in so much pain! It leads to thoughts of ‘what’s the point’, but we just have to cling on 🙁
I’m very happy (and relieved haha) to hear that the prompts for Jan are suitable to begin the year with! Sending you many good thoughts, stamina for us both (lol), and lots of happy moments!
I enjoyed reading your thoughts on these prompts. I feel like I can relate, especially the breaking one. When things are bad enough, I often break my own coping and helping “rules”. I do this many times because I can’t even think clearly enough to try to help myself. When I’m that bad, it’s ok. And, I have to give myself that permission.
Thank you Lisa! Strangely, people seem to be able to relate to this particular prompts post. It is actually my most vulnerable and messy response yet haha. Sending you lots of love and mental strength and self belief 🙂 x
Sheryl – thank you so much for having this linkup! I understand the sleep struggle…my partner is very much a night owl, and I’ve grown to love mornings, so the last couple of months I’ve fallen out of my healthier sleep habits as well between being sick and the holidays. I’m working on being better about it too! Part of my frustration is that the amount of sleep I need varies dramatically, so having a set sleep and wake up time doesn’t work in the mid-to-long term, as I’ll have months of needing maybe six or seven hours of sleep a night, and then weeks to months of needing closer to 11 or 12!
I’m so appreciative of you being open about all of this, since those of us managing disabling conditions often have more similarities than we realize. Sleep and energy and stamina and frustration all tend to be problems no matter what our precise condition is!
I really empathize with you on the building stamina process and allowing rest days as well! I’m doing similar self-work with the goal of creating my web app and building out my blog, but it’s that balance of pushing, but not too hard, and recognizing the days when pushing helps, and the days where pushing is just a horrible idea! Allowing for rest is also one of those essential pieces that can quickly get thrown into disarray by harsh self-judgement…the question of if I’m using my extra symptoms as an excuse not to work or am listening to my body and resting can get overwhelming at times, and worrying about it only increases my stress and makes relaxation and recovery more challenging! Please keep taking care of yourself and keep up the great work you’re doing!
Hi Alison, thank you for sharing your vulnerabilities and life here as well! As mentioned to Lisa in the comments, I’m surprised by how so many people can relate to my prompt replies, because it is my messiest, most vulnerable response to date!
Yes life is all about balance it seems, hey! Both in the compromises we make with ourselves and with others, and also with work, self-care, blogging, etc. Especially precarious as someone with chronic illness too because we’re such fragile things ;p
Sending you much love and good thoughts. Hope things get better and better in 2019!
I have had sleep issues since I was a kid and they got worse as the pain did. So severe that even my pain psychologist said it was pretty embedded and would be impossible to fix. But… then this vestibular disorder. And now I am drained to all hell at night from worsening symptoms. I crash at 11 and get up at 8. Like clockwork. And rarely wake up at night. So ironically the vertigo has given me a perfect sleep cycle. But when that is treated… I bed it will go back to the way it was. But I’ll take the sleep now, as I need it.
Hi Nikki, yea my neurologist said yesterday that it certainly doesn’t help with my epilepsy at all, the worst trigger in fact. I didn’t think they played that big a role, heh. While I’m not happy that you have those pains, I’m glad you can squeeze some rest in. I had pure insomnia at one period in time and it was certainly NOT fun. Wishing you many restful nights in 2019!
I love your responses to the prompts. Although our illnesses and battles may be different the resulting struggles seem to be very similar.
I really love these prompts that you do every month. They stretch me as a writer and they make me focus on things about myself that I hadn’t necessarily thought about,
Hope you have an amazing New Year!
Hi Jennifer, thank you. I think this entry may be one of my most raw, imperfect and vulnerable one yet. Yes I suppose pain does that to a person. I think people who say ‘pain will never break me’ have never truly experienced the full extent of pain (because there is no limit – I’m sure you understand that ;)).
And I’m really happy to hear that you find these monthly linkups useful! Sometimes I wonder if we’ll run out of things to write lol, because often I realise certain things keep coming back to me on a different month.
Sending hugs and wishing you a fabulous new year!
Reading this reminded me how much we have in common. Although our ailments may be different, the consequences we live with while having a chronic illness are often the same. Life is hard, but man it feels like “we” have to be so much stronger and diligent with our daily lives to just stay afloat. I don’t like to read other’s response to the prompts before I write my own, so they don’t affect my responses. However, I could have written something so similar to what you wrote. The sleeping habits, stepping outside my comfort zone, fear of the pain to come and debilitating depression that comes with all of it.
I must tell you, you are someone that I look up to and admire. I read your articles and with all you go through, you find a way to help raise others up. Just know that you are doing a kick-ass job at the life you were given and I’m proud of you. Gentle hugs my friend.
Hi Suzanne, thank you so much for your kind words 🙂 Yes I think living with chronic illness, no matter which, comes with a certain overlap emotionally, physically and mentally. It takes a hit on being human, alive, and also on your aspirations in some form. Nobody wants to be decrepit or in pain!
And I actually don’t write with the sole aim of lifting others up (sorry I’m not that noble hehe). And I feel like a bit of an imposter at times because my pain levels these days aren’t as bad as they were a few years ago, though I still get bad days and risky hospitalisation stays! But I think our collective experiences, shared for whatever purposes, can still contribute to knowledge in one form or another 🙂 Sending love for the new year! x