Home General Info & Awareness A Chronic Voice Link-Up: March Prompts

A Chronic Voice Link-Up: March Prompts

by InvisiblyMe

Hey everyone, how’re you doing? I really hope you’re all keeping as well as possible during what is such an insanely worrying, bizarre time.

I’m fashionably late with this one. I drafted it at the start of the month yet here we are, right at the very end, and I nearly forgot to publish it. It’s not related to coronavirus and I decided to leave it ‘as is’, the way I originally wrote it. This is for the A Chronic Voice March link-up.

I don’t tend to admit to being scared. But I have been, and I am. I’m overwhelmed. I won’t go in to the reasons as they’re all related to the current virus situation but it’s not been too good, and I know I’m not alone in that. Please feel to reach out if ever you need someone to talk to. And please hang on to a little hope everyone, because that’s more important than ever right now. Sending love to you all.

1. STAYING

STAYING at home, maybe even in bed, nearly all day every day may sound like a luxury. It’s not. Since my first surgery in 2015, my health went downhill and nerve damage took hold. I lost a lot of my ‘old life’ very quickly. Not being able to sit ‘normally’ in a regular chair means I’m propped up in bed for much of each day. Not being well enough to go out or do the things you used to do isn’t much fun, but it’s the new ‘normal’ for many with chronic illness, disability and/or chronic pain.

I’ve come to appreciate comfort of being at home and to see the joy in the small things day to day. When your options are limited, you can either get frustrated all the time or come to some degree of acceptance, working with what you’ve got and making the most of it. Of course it’s challenging. There’s no romantic notion of luxury when your bed becomes your dining table and your office.

2. DOING

For many of us, we develop certain ways of DOING things, methods and routines to make life more manageable. Best laid plans are often made to be broken with the unpredictability of health issues, and yet some of us need that control, that ability to plan.

These ways of doing things can give us a little structure, confidence and comfort amidst the chaos and uncertainty. 

3. BEING

I’m not always good at BEING the chronically ill person. It can be beyond frustrating when you’re sick of being sick, and fed up with the limitations on your life and what you can do.

You just do your best to focus on what you can do, not what you can’t. It’s still a bitter pill to swallow some days. We’re all human, just doing life and figuring it out along the way. Whatever your struggles, it’s okay to accept that nobody and nothing is perfect.

Acceptance of illness, pain or the situation you find yourself in is not easy. It’s a continual learning curve, an ongoing masterpiece and evolving work-in-progress. 

4. TARGETING

To keep moving forward, you need to look at what you’re TARGETING each day. Celebrate the achievements, no matter how small. Set manageable goals, whether it’s having a healthy meal, a shower or a small walk, or the larger, more long term goals like learning a new skill, taking up a hobby or writing that novel you’ve always dreamed of making a reality.

The goals, no matter what they are, give you something to aim for and work towards, just don’t put too much pressure on yourself along the way. 

5. WEIGHING

Leaving the house or doing something sociable can involve a process of WEIGHING up the benefits versus the costs. Any time we do something, we pay for it afterwards; pain, exhaustion and worsened symptoms are all stark reminders of how much it costs us do the things we want or need to do.

Sometimes we feel we want/need to say no but we worry we’ll let someone down, leading to more guilt and more burnout. In some cases, saying no is the best thing you can do for yourself as it’s putting self-care into practice.

But then sometimes the costs are worth it when weighed up against what we could potentially gain; a sense of achievement, some happiness and enjoy to make the day brighter, or some memories to treasure. Those weighing scales certainly get a lot of use.

Would you agree with any of these? Do you perhaps share some of these experiences yourself?

Stay safe & as well as possible.

Caz  ♥

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45 comments

Ashley March 26, 2020 - 4:41 pm

I completely agreet that we should celebrate all accomplishments, big or small.

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InvisiblyMe March 29, 2020 - 2:51 pm

Absolutely, all the more when the days of showering because of depression becomes such an uphill battle ????

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Masha Ellman March 26, 2020 - 6:14 pm

You have such great insight, I totally agree with all of what you say. Thank you Caz stay well dear <3

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InvisiblyMe March 29, 2020 - 2:52 pm

Thank you, Masha. Stay safe lovely xx

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John Rieber March 26, 2020 - 7:37 pm

Terrific post – great ideas – we are all in this together!

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InvisiblyMe March 29, 2020 - 2:52 pm

Glad you liked the post, John. Thank you – stay safe & well! x

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Eliza March 26, 2020 - 7:38 pm

I had a comment but it didn’t work. My browser has mood swings.

How are you doing? I’ve been thinking of you.

Love, light, and glitter

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InvisiblyMe March 29, 2020 - 2:54 pm

I guess browsers are allowed their own blips and mood swings. Thanks for trying again with the comment. How’re you keeping at the moment? It’s pretty tough for everyone at the moment, very challenging times. Stay safe, Eliza xx

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violaetcetera March 26, 2020 - 8:17 pm

Agree to all of this.
Take care, Caz, we all are in this together xx.

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InvisiblyMe March 29, 2020 - 3:21 pm

Thanks, Viola. Stay safe & well  ♥ xx

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The Lonely Author March 26, 2020 - 9:35 pm

Caz, I am a person who refuses to admit when I am scared. (Stupid macho of inside me).
But I will make a confession to you. In my current condition, with the weak heart,
coronavirus is very dangerous. In my normal state I believe I would have been one of
those who could fight the virus, but in the state that I am in now. It has me a bit
worried.

The staying at home isn’t bothering me in the least. I am writing more poetry.
Sending you the biggest hugs.
Please stay out of harms way.

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InvisiblyMe March 29, 2020 - 3:49 pm

While I don’t think fear mongering is usually healthy, it’s pretty logical to be cautious and scared right now. It’s dangerous and you’re vulnerable. I get it. Are you able to get the things you need for now with groceries and meds and such? Please, please stay as safe as you can. Keep writing your beautiful poetry xx

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Terri, Reclaiming HOPE March 27, 2020 - 2:01 pm

Oh Caz, I’m sending you lots of love and a big ole’ hug right now. It’s not easy to admit we’re scared, but just know that you’re not alone. I would guess that most of us are feeling at least a little uneasy right now. You know I’m always here if you want to talk. All you have to do is message me. You make some outstanding points about how we have to structure our lives around our illness, whether it’s doing those things that make us feel better or weighing the cost/benefit of doing certain things. Hang in there, and stay safe sweet friend.

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InvisiblyMe March 29, 2020 - 4:26 pm

Thank you, Terri. You’re such a kind soul, I really appreciate it. How are you doing? Are you able to get everything you need for the moment? Stay safe & as well as possible lovely ♥ xx

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Ann Coleman March 27, 2020 - 3:08 pm

Your blogging community is here for you, Caz! And yes, we have to have hope. I know this is so much harder for those with chronic illnesses, and I’m so sorry for that.

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InvisiblyMe March 29, 2020 - 6:36 pm

Thank you for the lovely comment, Ann. It’s tough for everyone and sadly many governments haven’t dealt with it well from the offset. Keep a little of that hope alive. Stay safe lovely ????xx

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Kymber Hawke March 27, 2020 - 4:55 pm

Big hugs, Caz. xo

For me, weighing is so hard because of the guilt you mention. I wish I could commit to plans and then follow through with them 100% of the time.

Thinking about you and hoping you’re having a good day.

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InvisiblyMe March 29, 2020 - 6:38 pm

Guilt can be so insanely pervasive, getting under your skin and sneaking up at any opportunity. Giving yourself permission, knowing cancelling plans isn’t your ‘fault’, isn’t easy. When others are involved, you want to think that if they matter and they care then they’ll understand. It’s sadly not always the case but you also need people in your life that are in your corner and have compassion, just as you would for them if the shoe were on the other foot. Hugs right back ‘atcha, Kymber!  ♥ xx

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darnell March 27, 2020 - 5:50 pm

This is a bad time for all of us. It is especially hard for those with chronic illnesses. One good thing that is happening is businesses are opening doors to seniors and people with chronic illnesses one hour before the general public. This helps independent people at risk like my dad DOING a routine to keep them mentally healthy. He has taken advantage of grocery shopping, and hardware stores.

Caz, I hope you take advantage of any perks the government and business offer, since things may not go back to the way which was.

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InvisiblyMe March 30, 2020 - 9:00 am

You’re right, there are at least a few things happening to try to help those in need. Sadly it doesn’t seem to be working well in the UK (at all!) so many are still forgotten about, unable to get help or finding the help is just not what it seems. I’m glad your dad is able to get out and safely get a few things. Please stay safe, you and your family, Darnell ???? xx

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Smitha March 27, 2020 - 6:06 pm

Every post of yours gives me the inner sight of the world not known to many of us. I take my time to really read and respond to your posts. Thank you for showing the absolute positive we can look in our situations. I am wishing and hoping…. and hoping for the very best for you and all of us.

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InvisiblyMe March 30, 2020 - 9:02 am

If I can give a little insight into a different perspective to just one person, then I’m so glad I wrote it. Thank you so much for the wonderful comment. Please stay as safe & well as possible lovely. Save me a slice of cake? ???? xx

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Stuart Flack March 27, 2020 - 9:26 pm

Another really honest and insightful post. Lots of us are really scared about what’s happening right now, and maybe more of us should put our hands up and say so. Your honesty will undoubtedly help others to understand and rationalise their own fears at this time.
2 things stand out for me from your excellent post: 1) I am totally with you on being bad at being chronically ill. I ended up going to my doctor at the end of last year and telling her I was just fed up of it! It felt good to say it to be honest. 2) Weighing up the pros and cons of going out or meeting other people suddenly feels like there’s even more jeopardy involved than usual, which makes it a scary time to be chronically ill.
Thank you so much for your honesty. Like many others I gain so much from reading your posts. Take care.

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InvisiblyMe March 30, 2020 - 9:09 am

Maybe I should do a post about all of the things in my head right now around the current situation because they’re things I don’t like; anger for one, considering I’m not an angry person. Knowing we’re not alone in feeling like this can be reassuring. Thank you for visiting here, I’ve just found your blog and started following. I’m sorry you know all too well what chronic illness life is like and how it can make you so utterly fed up, not to mention tied up in knots with the weighing up continually with the things we do/don’t do. Thank for you such a brilliant comment and I really hope you can stay as safe as possible during what it a very stressful and worrying time. x

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Carolyn Page March 28, 2020 - 6:43 am

So much I’d like to say, Caz; though, I’ve said it all before.
You are such a marvel; you voice the concerns of many. I am so pleased to know you and read your incredibly honest and rational thoughts. Yes, I have experienced almost all of your words during times of illness. Being open and truthful with ourselves (and others) is, in my experience, the best option of all.
Much Love to You…
xoxoxo

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InvisiblyMe March 30, 2020 - 9:13 am

Honesty isn’t always easy, but sharing what can affect many of us and the ways many of us likely feel can help us to know we’re not alone, which seems to take the edge off it a little. I’m sorry you know the experiences all too well yourself, Carolyn. Thank you for the lovely comment. Please stay safe  ♥ xx

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Marilee Wein March 28, 2020 - 7:58 pm

Although you did not revise this post to include worry over Covid, one must try to imagine the increased load on the chronically ill and their families.

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InvisiblyMe March 30, 2020 - 9:36 am

It’s not easy for anyone and I think there must be a lot in the chronic illness community finding it particularly challenging, especially faced with difficulties when it comes to essentials, groceries, meds etc or getting the face to face help or medical appointments needed. Stay safe & thank you for the comment, Marilee. xx

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da-AL March 28, 2020 - 8:38 pm

wise encouraging words as always, Caz

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InvisiblyMe March 30, 2020 - 9:37 am

I wasn’t going for wise, I just wanted it to make sense from my addled brain ???? Thanks, da-AL! Stay safe lovely xx

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The Oceanside Animals March 29, 2020 - 2:58 am

Charlee: “We’re pretty good at the staying and the being.”
Chaplin: “And the targeting, when it comes to our toys.”
Charlee: “We’re not so good at the doing, unless doing means sleeping.”
Chaplin: “And as for the weighing, well, Dada did that to us earlier in the week and now we’re on a diet.”

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InvisiblyMe March 30, 2020 - 9:40 am

Naww diets are no fun, I hope you guys can still get treats. Maybe a little more doing that’s not sleeping will mean dadda can still gives yous treats! That’s what I’m telling my cat anyway (who tells me he’s not getting big, he’s just getting extra furry!) And to dadda – Stay safe, especially after everything you’ve been through with your own health.xx

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George Rector March 29, 2020 - 10:23 pm

You have every right to be scared. Those who aren’t are fools. Sandy and I are both in 2 categories of vulnerable, and we are (Sunday) on Day 17 of Staying Home. I am encouraged by the fact that we are doing the things on your list. It’s nice to know we might be doing some things correctly. We have had limited contact with neighbors, and that was when they have very graciously picked a few things up for us. Otherwise we’ve talked with our next door neighbors from our respective back porches. I wish you the best and pray for your well being. – George

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InvisiblyMe March 30, 2020 - 9:42 am

I think some of the media’s fear mongering could be good, for a change, making people take things a little more seriously (if not for themselves then at least for others, because it affects everyone). I’m glad you’ve had a few things picked up for you; do you have everything you need for now? Being able to stay in touch by talking / shouting across your porches is a good idea. Please stay as safe and as well as possible, both of you ???? xx

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Katy March 30, 2020 - 10:26 am

Sending Love to You as well, Caz. Your fear is understandable. I’m stuck in bewilderment….all feels like a crazy dream. It’s got to be very odd (to GREATLY understate what I’m trying to say) for all of this to be going on in the world while You already have a full plate of health concerns. I am so sorry for the extra weight this heaps on top. Thank You for this post; for Your vulnerability and offer to be an ear. I hope You and Yours are well. Stay safe. Looking forward to the day we’re all seeing this in the rear view mirror! Sending Huge hugs Your way!!! ❤️????????????????????

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InvisiblyMe April 1, 2020 - 10:05 am

Thank you so much for the lovely comment, Katy. I love your choice of word with ‘bewilderment’, it seems like a horrible nightmare that’s too unbelievable to get your head around sometimes, doesn’t it? Please stay as safe & well as possible, and let’s hope the brighter days aren’t going to be too far away  ♥ xx

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Holly March 30, 2020 - 8:03 pm

Most importantly Caz, I am sending you my love and prayers during this unbelievably difficult time. It’s certainly okay to admit to being scared and overwhelmed. It has truly been a madhouse of a time, feeling almost like a really odd/bad dream! It’s just kind of unprecedented how things are panning out.

There is very real concern for immuno-compromised, those without adequate resources and so many more. My prayer is that the Lord would shelter you and everyone involved under the shadow of His wings until the ‘storm’ has safely passed. My heart aches and goes out to anyone who has lost someone or are currently suffering.

This whole post is incredible, but I think my favorite part is targeting. You’re absolutely right. Life is much easier right now when taken in bite-sized chunks. It’s very easy to see all of the ‘moving parts’ and become totally and completely overwhelmed. Setting small goals that are attainable helps regain some normalcy and serves as a reminder that we’re still moving in the right direction!

I adore your transparency Caz and we all understand how you feel. You are definitely not alone. I have been limiting my exposure to the media because while being informed is definitely healthy – some of the fear tactics being used are horrible. A spirit of fear has definitely been unleashed across the globe and I pray perfect love & peace will quiet weary hearts in this hour.

Most of all, I pray that you are able to get some rest, some relaxation and continue to do some things you love to lessen the stress of all this craziness. Much has changed in this present situation, but much of the beautiful things about life (like your friendship!) are still present and celebrated! ????

Sending You My Very Best,
Holly ????

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InvisiblyMe April 1, 2020 - 10:08 am

Thank you for another amazing comment! My thoughts exactly, Holly – it’s like an awful dream, it really seems so unbelievable and bizarre sometimes when you think of what’s going on. I’m so glad you liked the post and as much as I don’t like that you can relate, I’m also glad that you can (which means I wasn’t writing nonsense ????). I think limiting news exposure is a good idea when it comes to current events. It’s important to know what’s what, but there comes a point where it just gets too overwhelming.

Are you able to get the things you need for now? It’s so difficult for many but please stay safe, Holly ♥ xxxx

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Holly April 3, 2020 - 4:30 am

Hah! I don’t think you could write nonsense if you tried to on purpose my friend! Trust me on that. You are a brilliant writer and always will be.

Much like so many other’s experience, we are unable to get many essentials. Toilet paper is nearly impossible to find…even still. We found 4 rolls a week or so ago and that’s it. Crazy! Food is iffy at best. A lot of fresh fruits and veggies are still easily found but other items, not so much. Cleaning items are impossible to find that I’ve seen; no antibacterial anything, laundry soap and dish soap are all gone. A limit of 2 max has been placed on every available item which might help keep hoarding down but means shopping is required more often. (sigh) If stores had prepared better and stopped the greed before it began, many more people would have the items they need to be safe and cared for as well. Ticks me off, to be honest.

How about there for you, Caz? Are you able to find what you need?

I am so sorry for having been out of touch. We have geared up our other business, the plant nursery. Getting all of the new plants in pots, making sure our older plant friends are happy and getting all of the yard work done has kept us busy. Admittedly, it has been a nice distraction! It never ceases to amaze me what getting the body moving, even just a little on those tough pain days, can do for mental health! If that’s in nature or around plant life, even better. C’mon over my friend – I’ll pull up a seat under a shade tree for you with your favorite book and drink! 🙂

Sending you ALL my love. I hope to be in touch very soon. Thinking of you often and praying you remain safe and sound. BIG hugs! ❤

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laurie Hanscom- harmon March 31, 2020 - 11:55 pm

Great insight. Terrific read. Thank you for sharing.

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InvisiblyMe April 1, 2020 - 10:20 am

Thanks, Laurie, glad you liked it! x

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Mrs. Ram’s Jams April 1, 2020 - 6:28 pm

I hear the “being” section here loud and clear. I pretty darn terrible at being chronically ill sometimes. Some days being is easier done than being on other days.

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InvisiblyMe April 3, 2020 - 4:29 pm

You’re right with some days are harder than others with the ‘being’ aspect. It’s not always easy, not by a long shot. I’m sorry you can sadly relate, but I appreciate the comment because you/I/we are not alone in feeling like this. xx

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luisa April 30, 2020 - 9:54 am

Great insight!
I agree with you

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InvisiblyMe April 30, 2020 - 1:44 pm

Glad you liked the post, thank you! Take care & stay safe.x

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