Home My Journey Looking To The Months Ahead With Chronic Illness & Pain

Looking To The Months Ahead With Chronic Illness & Pain

by InvisiblyMe
A photo of a woman with big sunglasses holding up an ice cream cone in front of her face. Below is the title : Looking to the months ahead with chronic illness and pain. July's A Chronic Voice Link Up.

Today I’m going to be using Sheryl’s fantastic writing prompts as part of her A Chronic Voice blogging link-up. The words this month relate to developing and transforming, so I thought I’d use them in looking to the next few months ahead with chronic illness & pain as we see the sunshine come out and Covid19 lockdown restrictions lift.

1. Ageing – With Chronic Illness & Pain

I don’t know where the time’s going and the inevitable is already creeping up: Another birthday in August. I’m busy practicing the sacred mantra I call Ignorance-Is-Bliss. Try it. It works wonders until you look in the mirror.

I don’t mind ageing per se. I love that we develop and learn and grow and all that wonderful jazz. But I feel like I’ve been frozen in time. It used to be that I’d yearn to go back to age 19, just before my tummy problems started. But that was nothing compared to what happened in 2015 with my first surgery that truly sent my health down the metaphorical toilet. Now I’m stuck age 26 when I had that awful procedure, with my life in limbo and unrecognisable ever since as things continue to get worse.

While my worldly age continues to eek up the number ladder, it doesn’t feel right in my head. I can’t possibly be nearly 33. Nuh-uh. No way. My body feels like I’m 149 and counting, and sometimes I can feel so grumpy & miserly most of the time, but I’ve lost so many years now that my increasing age seems totally foreign to me. 

A photo of a cupcake in a rainbow coloured case with colourful sprinkles and a single red candle. It sits on a white table with a white background, with a few dots of light behind it.

There are so many unwritten rules and expectations in society for where we should be and what we should have achieved by certain points in our life, but life with chronic illness can totally change the landscape. You can’t use that same ridiculous social yardstick, but it’s not always easy to avoid thinking of how you seem to be so far behind in life. It’s also hard to not think about things you’ve lost and of the life ahead you can’t imagine having. You can’t help but realise how different you are, for better but also for worse. 

I try to turn the clock back by thinking about the days that were simpler and trying to find that girl again. The one that loved metal and rock music, the one that drank the guys under the table, the shy girl that was still trusting and naive, the one that didn’t sweat the small stuff. 

The girl who found it funny finding a penis-shaped cloud or would squint at a piece of burnt toast until she could see a Chuck Norris. People like to see Jesus in their toast but I’m not sure why when you can instead look for the unstoppable martial artist himself. It’s childish and immature, but who am I kidding, I still chuckle when I see a phallic cloud.

I want to hold onto that person for as long as possible, even when it feels she might have died a long time ago. There are parts of her still there somewhere, probably next to the yoghurts that look like boobs. 

A photo of me in the garden in black and white, wearing a t-shirt and holding up two yoghurts (white with a red part at the bottom which looks like a boob). I've got my head tilted to the side and I'm pouting.
Boob food. Literally the first thing I thought to do when I bought these yoghurts.

Related Reading : Birthday Anxiety With Chronic Illness

2. Suffering – With Chronic Pain

I often wonder what suffering with chronic illness or anything else is like for other people. I tend to think I don’t suffer in the ‘true sense’ of suffering, but I do, in my own way. I always think there are far worse things going on in the world and that others go through far worse than I do. There are people who go through torture, quite literally, with wars and murder tearing apart lives and families. People who suffer in ways I, and perhaps many of us, could never imagine. But we’re all on our own journey and our experiences cannot be compared to those of others. I’ve said all of this before, too. It’s harder to reconcile when it comes to yourself though. 

If you’re struggling, with whatever it may be, then that suffering should be appreciated in its own right. I could say I suffer with chronic migraines, and they drive me up the wall because it’s 5 days a week they eat up and leave me close the edge. I could say I suffer with chronic fatigue and chronic pain and bowel twists and whatever else, but I’m always quick to berate myself if I start feeling grumpy about it because I know – I know – it could be worse. I learned that the hard way before my health really tanked, and I’ll never think that again. 

We can go from one side of the argument to the other. From feeling miserable, having our lives focused just on those things we struggle with, feeling frustrated and maybe even a little resentful and hard done to for our suffering. Or we can beat ourselves up with guilt and tell ourselves we’re just being pathetic, or maybe even that we deserve it.

Neither approach is healthy or helpful, of course. A mid-way point would be sweet but these things are never quite that easy, are they? I suppose the key here is to recognise and really appreciate how each individual experience is unique and valuable without comparison, and that we deserve to treat ourselves with kindness. You’re entitled to feel however you feel, and we all cope differently, too.

At the same time we need to avoid letting ourselves get swallowed whole with the unfairness of it all, even if what you’re going through is indeed unfair and awful. Nobody can tell you how to feel, but at some point you also need to ask yourself whether how you feel is helping you or hindering you.

Only you live your live. You only have yourself to answer to. You know what you suffer with, and you owe nobody else an explanation for how you cope or how much you may struggle. 

Related Reading : Stoma Life – A Unique & Individual Ostomy Experience

3.  Transforming – With Chronic Illness & Pain

I’m attempting to work on transforming our home. Bit by painstaking bit. This is like a constant joke because I start something small – cleaning out two small drawers, for instance – and I never get even that finished before I’m totally floored. This is the wonderful life of unpredictable chronic illness. 

Then I get frustrated and angry because I wanted to get everything cleaned and organised and I fully intended to Mari Kondo the shit out of it all. 

A bird's eye view of a marble worktop, on which sits four boxes with clothing items in. A woman's hands hold one box to show she has neatly organised and decluttered her belongings.

Instead, the dining room is littered with stuff, the sofas have more stuff on them. My bedroom looks like it’s been ransacked. I’ve not seen the cat today, but he’s probably under another pile of stuff.

Transforming is a slow process when you’re poorly or managing pain, and it takes a lot to overcome the frustration that entails. Pacing is not my strong suit, especially when the to-do list is growing exponentially. I know how to pace, I try to take regular breaks, but it’s dealing with the sheer frustration and then anger at myself that I find so tricky.

If anyone sees Ms Kondo, ask her to pop by my house. I think a bigger house would do the trick because my medical supplies alone take up an inordinate amount of space.

Related Reading : 16 Books To Declutter Your Home & Spring Clean Your Life

4. Navigating – Covid19 Restrictions Lifting

Worldwide, people are navigating the continually changing nature of the Covid19 pandemic. We’re sick of hearing about it, but we also need to know about the current situation so as to prepare ourselves and be aware of the latest governmental rules and scientific findings.

It’s a worrying time for many, especially perhaps those with chronic illness conditions that mean vaccines may not be possible or may not be effective. You can only do your best to stay safe and control your own behaviour, but sadly you can’t control the behaviour of others. If masks, number restrictions and social distancing are no longer legally required, vulnerable individuals are not as able to protect themselves. For others, perhaps the lifting of restrictions will signal a return to some kind of normality.

A photo of a woman wearing a t-shirt, stood against a large window looking out with her hands up to the glass. She is wearing a face mask, as though dealing with stress and loneliness during the Covid19 pandemic.

Does anyone else feel like they’ve lost their marbles after all these months? I’m not sure I can look at a cup of takeaway coffee the same way again (don’t touch it!) or a Subway sandwich (have they cleaned their hands?) or a chippy (did they breathe on it?). 

I can’t remember what it’s like to stop for a cigarette after grocery shopping and not stress over antibacterial cleaning my hands first, then wondering whether the lighter will set fire to my hand. I’m so clumsy that I feel it’ll happen one day, it’s just a matter of when.

I can’t remember what it’s like not to Dettol the hell out of all the groceries before I put them away. 

But we do all of these things to keep ourselves and our loved ones safe. 

We just have to hope the marbles haven’t rolled too far away so that we can retrieve them once this is all over.

Related Reading : What You Need To Know About Covid19 Antibodies After Vaccination & Where To Get A Test

5. Visualising – The Months Ahead

Visualising the next few months is easy if you assume things will all tick along as they have been. But life isn’t like that, and if you anticipate sameness then there’s a good chance the unexpected will trip you up. 

Change and uncertainly are the only things we can be sure of when looking to the upcoming months, but there are things we can anticipate and prepare ourselves for, and it’s absolutely worth having some goals and hopes, no matter what they might be. 

What would I like to visualise? I’d love a milkshake in the park. It’s probably been nearly two years, so this is a high priority one. But I want it without having to think about masks or whether someone’s breathed on my liquid chocolatey goodness. Without having to think about what I’m touching & continually apply sanitiser. Without having to take my own drink tumbler to pour the milkshake into, or a picnic blanket to sit on so as to not get Covid on my arse. 

Things were never easy before the pandemic because of illness and pain, and Covid just significantly increases the level of stress and energy required to do anything. 

I want to visualise getting the house organised and actually moving like we’d hoped to before the pandemic hit. I can’t imagine this happening, but I’d like it to. 

I want to visualise less awful stuff in the news every day, but that’s not very realistic now, is it? 

I’m not sure whether I’d like to visualise surgery or not. I need it, but I want it like I want a lobster attached to my left tit. That means I don’t want it, just in case you weren’t sure. 

A drawing of a brightly coloured lobster against a white background, with its pincers up and a smile on its face.

I’m not doing holidays or day trips or anything fancy this summer, so nothing new there. I’m just hoping for sunshine and warmth because I absolutely love not being dressed up like the Michelin Man. I want nice days to sit in the garden, as do we all, but the UK weather often seems to have other plans. A bit of natural vitamin D wouldn’t go amiss.

I’m thinking sunglasses, sleeveless tops and ice-creams. The problem lies with unpredictable health problems – I’m never well and I find that the window of time I have for being just about functional continues to gets smaller and smaller. You have to take any moments of nice weather as they happen when you’re physically able to, even if that means ditching the to-do list for a little while. Come on, sunshine. We’ve missed you! 

Related Reading : 10 Ways To Deal With News Overload & Emotional Stress

★ ★ ★

Whatever happens and however the months ahead look, you will manage it. You can deal with whatever life throws your way, but I hope the summer is kind to you all. 

A black scroll divider.

How are you feeling about the months ahead? Is there anything you’re hoping to do, are you in the middle of a transformation of some kind, or how do you feel about pandemic lockdowns lifting?

Caz  ♥

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50 comments

Blogging_with_Bojana July 14, 2021 - 4:43 pm

Boob food. Haha. Well, this certainly made me laugh.

Ftr, I’m trying too to find that girl again…but alas! But then again, if she shines through all those thick clouds on and off, I’ll be more than happy to say hi.

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InvisiblyMe July 19, 2021 - 10:38 am

Glad you liked the Boob Food. I’m thinking of making it into a series, but after tarts & tomatoes, I think I’ll get a bit stuck.

That girl is still there, B. She’ll be just under the surface when Elvis appears on your toast. Let her in ????

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Sandee July 14, 2021 - 4:51 pm

I laughed at the boob food too.

You’re so young, but you’re right as we age things happen. I can’t imagine how difficult that will be for you. I wish I could wave a wand and all your health issues would be no more.

Have a fabulous day, Caz. Big hug. ♥

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InvisiblyMe July 19, 2021 - 10:39 am

Aww thank you, Sandee. Many have it worse than I do, but there’s no denying that whatever it is you’re dealing with health-wise it can totally change the landscape of your life.

I’m glad you guys had a fabulous time boating. I look forward to reading more about it when you put the post up! ???? xx

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Anne Fraser @theplatinumline.blog July 14, 2021 - 5:27 pm

Someone has been listening to your plea for sunshine. I hope you get your milkshake in the park. I think you might have to feel the fear and do it anyway. I am sure the person you were is still inside and you can still find funny shapes in the clouds.

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tinytearstoni July 14, 2021 - 6:14 pm

I turned 49 yesterday. I dont mind getting older either. It’s life! – bloody hell, I’m looking forward to the big one next year, feeling grateful! But I have to admit, I too was thinking back, back to that 38 year old who didn’t have a care in the world, loving life and every god damn minute of it. Then the symptoms of MS started and here we are. Still the fun loving girl but with alot of naps in between. Some days it’s hard hey, looking back…x

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InvisiblyMe July 19, 2021 - 10:48 am

Toni – I’m so sorry I was late for your birthday. I sent you a Facebook DM.
And I’m sorry too that you have those times where it’s hard not to look back, to yearn for those times and that person. It’s strange looking at it from the outside though, because I see you as you are, now and always, and she’s pretty damn awesome. Maybe we see ourselves more severely, and we see the feelings too, like the way we used to feel inside as well as how we could be more carefree without the things we now have to manage. But that fun-loving girl is absolutely still there, Toni, 100%. There’s so much more to you than MS and how you’ve changed as a result. Way more. You rock ????????????????

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InvisiblyMe July 19, 2021 - 10:44 am

The weather has certainly turned nice here, hasn’t it? It’s gorgeous, and quite a shock to the system when we’re so used to chills, rain & grey cloud. Thank you for the lovely comment – I’m glad to say I got me and my mum out for a milkshake, and she loved it! As did I. I hope you enjoy the next few days of glorious sunshine, Anne ???? xx

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ashleyleia July 14, 2021 - 5:33 pm

I like the milkshake in the park idea, and I could let the guinea pigs have a munch on some grass.

I love the yogurt pic, and think it could be quite attractive if you attached a lobster to one of the yogurts. Actually, you could attach of chain of critters to each yogurt, and fling them around in circles. Now there’s something to visualize…

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InvisiblyMe July 19, 2021 - 2:09 pm

I can hear the Moulin Rouge soundtrack playing to that image ????

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capost2k July 14, 2021 - 7:36 pm

The boob food WAS funny! But I enjoyed the Kentucky Bourbon shirt even more. Guess after emigrating here from the ‘real mid-west’ (i.e. Kansas and Iowa) I’ve finally found it to be “home.” If you’re even northern Kentucky way, give me a holler in my email and Anita and I will treat you to a Crank & Boom ice cream. ????
You are in my daily prayers, Caz, that The God Who Is will guide you into understanding. May I recommend Victor Frankl’s book, “Man’s Search For Meaning”? It amazes me that with all the insight he gives in this short book that he did not become a Christ-follower, as much of what he wrote dovetails right into Christian theology.
❤️&????

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InvisiblyMe July 19, 2021 - 2:13 pm

I could definitely go for a Crank & Boom ice cream. Yes please! That’s very kind of you to offer – you & Anita may regret that because it might be a one-way ticket I get out of here ????

I can only vaguely remember parts of Frankl’s book, which I read many, many years ago. His experiences in a Nazi concentration camp certainly gave him a poignant perspective on which to build on, and I see what you mean about Christian theology. I suppose it’s the essence of being Christian, all the good parts at least that cover being a ‘good person’ and respecting those around you, that can underly a person without the faith and belief in God. Frankl certainly brought a lot to the table where psychology is concerned, such as with his Logotherapy concept.

I hope you have a great week ahead! ????

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Ogden Fahey July 14, 2021 - 11:07 pm

I you quite sure you don’t want a lobster on your tit? I don’t think I do, but I can’t be sure now, I’m confused I guess . . Haha, Very amusing post Caz! 😀

I’m somewhere between shocked, horrified and outraged by the current UK Covid situation, now is not a good time to unlock, if not now, when, is the answer they come up with, but I remain horrified etc, not v.happy, I just wonder where we’re heading with all this. Conspiracy theories on the rise again, and no wonder! XX

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InvisiblyMe July 19, 2021 - 4:16 pm

I didn’t think I wanted a lobster on my tit but I’ve never tried it before so I guess there’s always a first time for everything ???? Glad you liked the post!

I agree, it seems crazy when hospitalisations and deaths are rising to throw caution to the wind. I just feel so much for all those for whom the vaccines might not have been effective, who’ve essentially just been ignored yet again. I’d also like to see published stats for how many hospitalisations and deaths are in those fully vaccinated, and what their antibody level was. Why aren’t they collating and publishing this data for the public? It’s very sketchy.

Thanks for your comment lovely. Stay safe & distract yourself from the dreary news briefly if you can! ???????????????? xx

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Ogden Fahey July 19, 2021 - 9:08 pm

Its been reported today that 60% of hospitalised Covid sufferers are double vaxed! Thats not good at all, if the vaccine were 60% effective, you would expect a max of 40% getting ill, not the other way around! Very worrying really, they must have more data than they are releasing, after all, there’s no shortage of people vaccinated, or cases in hospital etc!
Xx

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ruthsoaper July 15, 2021 - 12:31 am

I always appreciate your openness Caz and I hope that you get your milkshake in the park and lots of sunshine. What I would really love is to laugh and laugh and laugh. It’s something that I don’t do much of any more even though I try. I’m not sure how much of it is because of the state of the world and how much of it is the changes in my brain due to the Parkinson’s. I just know that I will keep trying.

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InvisiblyMe July 19, 2021 - 4:47 pm

Thank you for the comment, Ruth. My heart hurt when I read how you don’t laugh like you used to. I don’t think the state of the world or the current events help on top of what you already deal with, but that person that used to laugh and laugh and laugh is still very much there. I think you have a wonderful sense of humour as well as curiosity and joy about the world. That comes across in your blog very well. I suppose a little break from the news would be good for lots of folks, and I hope you can find the space to feel that lightness again and laugh your socks off ???????? xxxx

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Greg Dennison July 15, 2021 - 5:01 am

I feel like I’ve spent the last few weeks going back to how life was before COVID, but I go back to work in a couple weeks, and I’m worried about being too reckless once I have to be responsible again. Life in general has so many unanswered questions too…

Also, this was hilarious.

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InvisiblyMe July 19, 2021 - 5:22 pm

I’m glad the post gave you a laugh. I imagine things will be rather strange for a while yet with changes to going to shops or other venues, let alone back to work. You have your head screwed on though so I don’t think you’ll have a problem being responsible ????

What about those unanswered life questions? Anything in particular making your brain itch at the moment? I think the answer you’re looking for is 42 ???? x

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barmac5 July 15, 2021 - 7:53 am

You write such lovely and meaningful posts Caz. You really should put them in a book and get it published. Self publishing isn’t hard on Amazon ( I’m happy to help). You are so inspiring lots of people would read it. Xx

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InvisiblyMe July 19, 2021 - 5:34 pm

Aww that’s very kind of you, Bar! I’ve actually thought about it, though not writing about myself per se as I think that’d bore people to sleep (maybe I could write a book for insomniacs). I’m just so overwhelmed with stuff to do and nowhere near enough time where I’m functional enough to do it. Maybe one day… it won’t be pretty though! But if it ever happens I’ll ask you about self-publishing. It’s fantastic that it’s possible to do it on Amazon, opening up the platform so many people to achieve their ambitions and share their work with the world. xx

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Rachel Duerden July 15, 2021 - 8:35 am

Some of you post made me laugh and I love the wisdom in it; especially, not focussing too much on the negative things in our lives.
I hope you get your milkshake!
All the best to you.

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InvisiblyMe July 19, 2021 - 6:32 pm

I’m pleased to say I did get me & my mum out for milkshakes finally, and she loved it! As did I, I think I could live off chocolate milkshakes forever. I’m glad you liked the post, and thanks for the comment – I hope you have a lovely week ahead ???? xx

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Kymber July 15, 2021 - 4:01 pm

Aaaah, boob food. LOL I love it. I hope the summer is good to you, Caz, and that you get everything you desire. You deserve it, if anyone does.

There are things I wanted to do this summer and it’s looking unlikely to happen. I’m just keeping my chin up as best I can.

Sending you much love. xo

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InvisiblyMe July 19, 2021 - 10:53 pm

Thank you, Kymber! Why do you not think the things you’d hoped to do this summer will happen, is that because of the pandemic or other reasons? I will keep my fingers crossed you can do a little of what you had hoped to at least, or that you can think of others things instead that are doable. You also deserve some good times, and certainly some easier sailing for the rest of the year! Sending lots of love to you & the family ???????????????? xx

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SpookyMrsGreen July 16, 2021 - 1:37 pm

Tell it like it is, Caz! I love the humour you inject into chronic illness. Today is our last day of school and I am actually glad that the children will be off and we can get a break from the school run. It means I won’t need to take the car out every day and worry about driving with blurred vision (I have checked with doctors and they do deem me legal to drive, by the way!). We have no big plans for socialising, just friends in the garden, a few trips out, and lots of kitten time once we adopt our new babies 🙂

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InvisiblyMe July 19, 2021 - 11:19 pm

I’m glad you like the post, thanks lovely! I can’t believe we’re back to the summer holidays again already. The time seems to be evaporating. That said, I’m glad it gives you a break from the school run and a little more time to spend doing more enjoyable things at your own pace. Have you had the new eye stuff arrive? I hope it can help, but I still think it’s disgusting you’ve not had proper help and support, especially with the eyelashes themselves. With all the tech and treatments available these days, you’d think there would be something other than you plucking the suckers out yourself. I bet the new feline adoptees will bring a bit of lightness into your life – when will the fur be arriving, have you decided? I hope we get lots of photos! xx

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Despite Pain July 16, 2021 - 2:21 pm

Oh, try to stay young in your head. It doesn’t matter about anywhere else, so keep giggling at those clouds and yoghurt pots! Time goes by so fast. The other day, I was talking to a friend about the place where I used to work. I was shocked when I realised it was 27 years since I worked there lol. 27 years…how did that happen?

I feel for you trying to sort your house out. I have a constant battle between my mind and body with things like this. I want more order and less clutter. But I look at things and my body says, not today..

I hope you get your milkshake in the park sometime in the not too distant future, but yes, totally agree, I feel like we’ve lost trust for doing anything like that. I think UK is opening up too soon, but I guess other people are desperate for that to happen. I’m just going to stay a recluse forever.

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InvisiblyMe July 21, 2021 - 2:29 pm

You’re right, time does go fast. I’ve felt like that since my op in 2015; it’s all been a blur, and it’s actually pretty scary. 27 years for you is a long time, I can imagine that bringing up some emotions. Can you remember that place you worked well? I think my memory is okay in some areas but very spotty in others these days.

I still think – and desperately hope – that Covid has to end eventually. We can’t go on like this forever. It’s not the government rules of course, it’s Covid itself, and that’s what many people don’t seem to ‘get’. I agree on lifting too quickly as cases rise, and we’re still none the wiser on vaccinations because the government won’t publish the data the public should see. Hopefully there’ll be more scientific findings on antibodies soon, as that’ll be very important. xx

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Despite Pain July 21, 2021 - 7:01 pm

Sometimes I feel as though I could walk into that health centre and just pick up where I left off because my memory is so vivid. Unfortunately, the memory of the pain I was in over the years while working there is just as vivid so I wouldn’t want to. I couldn’t anyway, the building has since been demolished and a new fancy health centre replaced it. So I would be totally out of place and out of my depth. ????

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James Viscosi July 17, 2021 - 6:07 pm

If you WERE to have a lobster attached to such an, uh, location, at least you could maneuver the yogurt cup up there first. Then you could just throw both lobster and yogurt cup away and nobody gets hurt, right? Except maybe the lobster …

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The Oceanside Animals July 17, 2021 - 7:14 pm

Charlee: “Wait! If you don’t want the lobster, we’ll eat it!”
Lulu: “You two cats know a lobster is basically a giant cockroach that leaves in the ocean, right?”
Chaplin: “You say that as if you don’t think we would eat a small cockroach that lives on the land.”

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InvisiblyMe July 21, 2021 - 2:30 pm

Lobster attached to the yoghurt pot first, why didn’t I think of that? I’m afraid the lobster will end up in the plastic recycling though – Charlee & Chaplin will have no qualms digging through the recycling though, right? While you’re at it, we’ve been finding spiders around the house lately and could use your help getting rid of ’em. They’re all yours!

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Cynthia Covert July 18, 2021 - 6:03 pm

Boob Food!!! HaHaHa! I needed that laugh!!

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InvisiblyMe July 21, 2021 - 2:31 pm

Glad it made you chuckle! I’m thinking I could do an Instagram series, but I’m afraid I might get stuck after yoghurts, tarts, polos & tomatoes.

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Lindsay July 18, 2021 - 11:46 pm

my birthday is in august, too, and i also feel like my age doesn’t match the number. a part of me still feels like i’m the same age i was when all of my health issues started (mid 20’s) rather than my actual age, which is significantly higher. there are a lot of emotions that go along with birthdays for that reason, because i feel like i have missed out on so many prime years.

but on the other hand, i kind of like getting older, because then my actual age better matches the age i feel, with all of the aches and pains, and probably the age that i look.

i laughed out loud at the ‘boob’ picture. i need to find some of that yoghurt!

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InvisiblyMe July 21, 2021 - 2:34 pm

What date is your birthday, Linds? Your feelings on the whole thing match mine, and I agree with those emotions on birthdays because of health issues, the time we’ve missed, the way life kinda seems frozen when health issues first began. We don’t want to be as old as we feel though – we’ll have to make it to 150 first and I don’t think I’ve got the lung capacity to blow out that many candles! xx

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Sheryl Chan July 21, 2021 - 4:26 am

Thanks for joining in this month’s linkup! I really enjoyed reading your entry 🙂 It reminded me a lot about me, too. I think we’d get along swell in real life! I still listen to metal and rock 😉 I was ill since 14, so at metal concerts I’d sit far far behind and not near the moshpit, as I’d get vertigo from the bass haha. And I’m relieved to find another spoonie who smokes. I mean, it’s not good for our health of course. But I feel guilty about it. Sending good thoughts!

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InvisiblyMe July 21, 2021 - 4:36 pm

We can rock to metal music any day, Sheryl. We’ll just have to be propped up in bed on lots of medications to do it, but we’ll still be super cool ????

I didn’t realised you smoked either. We’re the odd ones out, it seems, and there’s so much judgement at the best of times let alone when chronically ill. If it’s a small vice where we have little else, then it’s a personal call that we shouldn’t feel so bad for if we don’t want to quit (a whole different story for those who don’t want to be smoking, of course).

Sending hugs your way – thanks for reading & the comment! ???? xx

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Claire July 21, 2021 - 1:34 pm

It’s very strange with restrictions lifting isn’t it. I was so careful for over a year, but have now decided not to be quite so strict now I have had both jabs. But it’s still such a worry with poor health.

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InvisiblyMe July 21, 2021 - 4:48 pm

You’re right, it’s strange and it’s still a worry when you’re not in great shape, take certain medications, are older and so on. I feel like it’s all or nothing here – either I keep cleaning and being painstakingly careful for my parents, or we do nothing. I can’t seem to relax things a bit because I think “ah, and it might be that one thing I didn’t do that allows one of them to catch Covid”. It’s exhausting. It’ll be good to get more information on the efficacy of the jabs and information around antibody correlations, too. Take good care of yourself lovely, stay safe but don’t drive yourself mad over it as we both will know how awful that is. xx

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Michelle July 21, 2021 - 3:32 pm

I love that no matter what you’re going through you still have an amazing sense of humor. The boob food cracked me up!

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InvisiblyMe July 21, 2021 - 6:49 pm

Glad you liked the Boob Food! I think a sense of humour is what’s kept me going & makes everything a little less embarrassing, too. Thanks for reading & the comment lovely. I hope the week’s treating you kindly ???? xx

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Gemma - Wheelescapades July 23, 2021 - 4:13 pm

Firstly I don’t think you need to find that girl, you’re right here. In everything you write and every time we chat, you are still the person you describe here. It comes through. Also, I knew before I even read it that those cloudy penis have gone nowhere. You’re someone that never fails to see the funny or ironic, it’s brilliant!
Age is a funny thing… I used to be bothered about getting older, especially because it made me think about the decline in my health and the shortened life that was expected with my condition. But I now see it more of a privilege to get old, the alternative isn’t much fun.

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InvisiblyMe July 24, 2021 - 5:58 pm

Aww, I don’t know what to say. You’ve made me teary, in a mushy good way. Thank you, Gemma. I really appreciate that. I think we tend to see ourselves quite differently to how others see us sometimes, and there are things we may not notice that others do. To me, I’m a big time grumpster. I don’t know what autocorrect changes that to dumpster. Must think I’m trash. Why isn’t ‘grumpster’ in the dictionary?

I can’t begin to image what it’s like growing up with the weight of a life-limiting condition on your shoulders, and the effect that has mentally. I’ve shortened my own life in my head since 2015, but that’s rather different. To see ageing as a privilege and to embrace the life you have now is no easy feat, yet you do it with grace and aplomb. ????

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da-AL July 26, 2021 - 3:25 am

you are the best, Caz – I am sooooo very very glad you’re here, cheering us all along, whatever age we are. I’m using this as the example of your blog for WEGO… but really, all your posts are wonderful <3

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InvisiblyMe July 30, 2021 - 5:21 pm

Awww, da-AL, that’s so kind of you! I really appreciate that, and all your support with my blog. I’m very glad we ‘met’ in the blogosphere, you’re awesome. ???????????????? xx

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Lisa July 27, 2021 - 9:07 pm

I absolutely love what you wrote. I too suffer with chronic illness but you have opened me up to a different train of thought to other ideas. I find I get quite frustrated with myself in regard to the length of time it takes me to do things now. As well my to do list just seems to grow more and more and nothing is taken off.

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InvisiblyMe July 30, 2021 - 6:02 pm

I’m sorry you know all too well what it’s like too, Lisa. That frustration you explained is what I feel too, and while it’s all very well to say we should go easy on ourselves and rest more, the list of things to do just keep growing. I wonder whether there are ways to take more things off, but I’ve not found any amazing ideas on that one yet! Perhaps we need to see whether there’s anything we can give the middle finger to first? Hang in there, Lisa. You can only do the best you can, and that’s always good enough, no matter the length of your to-do list. ???? xx

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Lucy July 31, 2021 - 2:00 pm

Thank you for sharing your thoughts Caz. I can relate to so much of what you have said. I feel more and more like I’m falling behind others my age as time passes but I remind myself that the social timeline that we all supposedly have to follow is made up and each of us are on our own unique journey 🙂 Us being on a different path doesn’t mean we’re falling behind 🙂 I hope you’re well. Lucy xx

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