Home General Info & Awareness Mini Update : Thank You, A&E & Poll Results

Mini Update : Thank You, A&E & Poll Results

by InvisiblyMe
A greeny blue background with a large white daisy to the right. To the left is the title: Mini Update - Birthdays, poll results & stoma stress.

Birthday – Thanks Bunches For The Wishes!

Firstly, thank you so much for the birthday wishes and for sharing your thoughts on birthdays. I’m heartened by each and every like and comment. I’m a little saddened that so many have felt that same bittersweet edge to birthdays, the pressure of social expectations and the sombre mood that can accompany them.

I don’t have photos of me from my birthday as my downcast expression may have broken the camera, so here’s a pic of my cat Virgil, making himself comfy and hiding from the world because he didn’t want to be outside in the rain.

A photo of my black and white cat, Virgil, snuggled on my dressing gown. His head is in between his legs, which are stretched in front of him, with his body and tail curled around into a ball.

Surprise A&E Visit

Secondly, I apologise for the delay. I had partly written this and intended on finishing and posting it on Monday. Then life got in the way. Sunday night was awful; I didn’t sleep, was in hell of a lot of pain, and stoma decided to stop working. Gave it until late Monday morning and then it was into A&E. Things still haven’t fully resolved, nor was a particularly good reason given for why it had happened. The surgeon on call doing rounds was actually the one who did my stoma revision surgery 5 weeks ago. He wanted to go for the ‘hopefully just a hiccup as your body’s still swollen and recovering from surgery’ explanation.

There were some ‘nightmare nurses’, as expected, but a couple of lovely ones too. I got to know a few great ladies in the ward I was in. For the nurse who told me I had to have Oramorph and that she knew best, despite me saying it doesn’t help and only makes me sick, I managed to get her back; violently throwing up for an hour just as she was about to finish her shift!

Why do they give such big spoons when you ask for a tea spoon? The spoons are huuuuge. It didn’t fit in my little yoghurt pot, but luckily I had my own tea spoon for that. When it came to the mini ice-cream (which are actually quite nice) it barely fit in that tub either, let alone my mouth. It’s cruel. And just plain odd.

Now I just want things ‘back to normal’ as I’m very uncomfortable, albeit not in such pain, and things still aren’t right. I’m also back to feeling like a ticking time bomb where this little munchkin of a stoma could have a tantrum at any moment.


Migraine Poll Results

There has also been some great feedback on the headaches, migraines and clusters post. I’m also sorry so many of you struggle with these, both infrequently and regularly. At the time of writing, the polls show that 32% of you get regular migraines, and a 26% occasional ones.

Even more of you get regular headaches at 55%, which is quite worrying. While 64% don’t experience cluster headaches, 23% do.

So, how do people deal with them? Just under 20% use prescription medications, 33% over the counter meds, and smaller proportions use lifestyle modifications and other options, or use no treatment at all.

A red circle with a white silouette of a face in profile. Within the head are two red thunderbolts, suggesting pain of of a migraine.

What I found fascinating are the ‘other options’ for treatments that have come up. Cannabis is one, though I’m not sure whether this refers to the drug in its usual state or CBD oil/vaping. Cannabis is showing a lot of positive outcomes for a lot of people with chronic illness, headaches and migraines included. Then there’s herbal teas and tinctures, the newer treatment gammaCore (not currently available for UK trial participants) and oxygen. Oxygen is one that has come up for cluster headaches, so if you suffer with those then this form of treatment is one you may wish to discuss with your care provider.

It should also be emphasised that if you experience new headaches/migraines/clusters, or ongoing episodes that have not been diagnosed or investigated, that you should seek an expert opinion and speak to your GP about your symptoms. There are a variety of causes behind such issues, though in many cases an absolute cause is sadly never defined. Still, you should have them checked out and get the support of a professional if treatment is needed, don’t suffer in silence.


Falling Behind

Yet again, I’m falling behind. The to-do lists on Monday are still there and growing since being in hospital, and still feeling unwell now means it’ll be a slow climb back to getting on track. I’m sorry I’m not up to date on blog reading, emails or responding to comments, but I will catch up eventually. Please know that comments left on the blog or on the Facebook page are valued and hugely appreciated. I’ve got two GP appointments Friday as well, for B12 and then spirometry testing for possible asthma. Right now I want to crawl up, watch Netflix and hide away from the world for a bit. Maybe on the weekend… 🙂

How has your week been going? I do hope you’re all as well as possible. Remember to take time out to look after yourselves. Sending my love and thank you for reading.

Caz  

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53 comments

Darnell August 16, 2018 - 3:34 pm

HI Caz,

Always good to hear from you. Just like you tell us to look out for ourselves, you do the same. The to-do list may grow, but you will get around to it. We understand if you take a while to read posts or comment. Do so when you feel up to it, that way blogging remains fun.
Nurses really are helpful but you know your body better than anyone. I hope that nurse you mentioned understands this now. As for the spoons, they brought my dad a huge one during his stay. I think the problem is the utensils aren’t matched to the approved dietary meals. You solved the issue (like me) with bringing your own. Hope to hear from you on better days.
Be Well.

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InvisiblyMe August 18, 2018 - 4:09 pm

I guess that whole ‘take your own advice’ thing is harder than it sounds, so thank you for the reminder. You’re right, trying to force things can make it more stressful, less enjoyable. I’m glad you took in a spoon too, I bet your dad appreciate that; strange how hospitals don’t seem to stock small ones as they’re not exactly tiny enough to be a swallowing hazard! Thank you so much for the kindness of your comment. I hope you are doing as well as possible and that you have yourself a good weekend, Darnell 🙂

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The Invisible Hypothyroidism August 16, 2018 - 3:51 pm

Look after yourself – don’t worry about the lists too much right now. YOU’RE the priority.

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InvisiblyMe August 18, 2018 - 4:05 pm

Aw thank you for the reminder, Rachel. It’s hard to prioritise ourselves when we feel frustrated at being unwell or exhausted and find ourselves falling behind, isn’t it? I hope you’re doing okay and that the weekend is a good one for you 🙂
x

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Comedy Plus August 16, 2018 - 3:53 pm

I hear you on the spoon. The right size is ever so helpful. I chuckled over that.

I hope you feel better soon. Feeling off isn’t good.

Don’t worry about falling behind. Just hit the reset and move on. It will take a lot of stress off of you. Do the Netflix thing. It’s what you need.

Have a great and healthy day. ♥

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InvisiblyMe August 18, 2018 - 4:32 pm

You’re right, worrying less about falling behind and not being able to do much at the present time does take stress off your shoulders. Thanks for the great comment, and I’m glad you chuckled over the spoon, it’s the only thing you can do when confronted with a spoon big enough to carry a kitten on! Have a lovely, restful weekend 🙂
xx

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Jacqui August 16, 2018 - 5:10 pm

Caz

Wow another hurdle for you on your stoma journey. Sorry it’s not going as smooth as hoped. Glad your cat enjoyed cuddling up on your birthday and you couldn’t break a camera if you tried x pretty as a picture xxx big hugs to you and thank you for the headache report.

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InvisiblyMe August 18, 2018 - 4:04 pm

Thank you Jacqui, it’s swings and roundabouts for sure but it does get disheartening to have so many setbacks after a while when the rest of my body isn’t doing so great either. Sadly too many of us know what that’s like. That cat… he’s photogenic but I know he’s only ever after one thing when he looks affectionate… food!! I hope you’re doing as okay as possible, take good care of yourself and have a relaxing weekend xx

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Toni August 16, 2018 - 6:44 pm

Happy belated birthday!. Enjoy your resting, Netflix and teaspoons!. Glad you’re home also. Give your cat a cuddle from me, and here’s to a better weekend for you, 🙂

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InvisiblyMe August 18, 2018 - 4:01 pm

The catkins will appreciate the hug, but he may start to pester you for snacks (all he really seems to care about once the affection has worn off!) Thank you for the lovely comment and birthday wishes – Sending hugs your way and hoping you have a good weekend xx

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Ashley August 16, 2018 - 6:40 pm

I hope your stoma decides to behave itself.
Interesting results to your poll.

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InvisiblyMe August 18, 2018 - 4:02 pm

I thought the poll was quite interesting and it’s good to share the ways we all cope and manage them, but sad that so many get awful headaches and migraines. Thank you – I hope you have a good weekend xx

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Christy August 16, 2018 - 7:34 pm

Hope you feel better soon! Good thing you had the ???? spoon! Don’t worry yourself with the lists just relax and watch some great movies like you were saying because that sounds like a much better idea! Hope the rest of your day is well Caz. ????

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InvisiblyMe August 18, 2018 - 4:00 pm

Thank you Christy, I guess being unable to do things gets frustrating and worrying when you feel you’re falling behind, but yes, resting and healing are probably more important. Glad I had that spoon too – the big one would barely fit in my mouth let alone the yoghurt pot!! Take care and I hope you have a good weekend 🙂
xx

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grace August 16, 2018 - 10:47 pm

I so wish I could take away your pain and frustration over all of the stressors in your life right now, even if just for an hour. Please just take care of yourself! I think somehow I missed the birthday 🙁 happy belated!…does that mean you are a leo too?

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InvisiblyMe August 18, 2018 - 3:56 pm

That’s very kind – I would do the same for you if I could. I’m sorry I’ve just checked out your birthday update post – That’s a lot of birthdays close together! You will rock 45 like nobody’s business 😉 Happy Belated Birthdays to us both – Thank you for the lovely comment, I hope you have a positive weekend to relax xx

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Alyssa August 16, 2018 - 11:28 pm

I am a little behind on reading posts as I have been feeling a little terrible. I am so sorry you are dealing with pain, that I do understand way too much! I hope your stoma starts acting right soon! I must say, your cat is ADORABLE and apparently love the camera! I am more than certain your beautiful face would never break a camera silly!!! I hope your birthday was amazing and I hope you start feeling better sooner than later!! Sending you lots of love and positive healing vibes!

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InvisiblyMe August 18, 2018 - 3:51 pm

You’ve had a lot on, Alys, and a lot of work to boot. I think you’re doing incredibly well to push yourself, just make sure to prioritise your needs and self-care in the process. Hopefully you can use the weekend to recuperate a little! Thank you for the lovely comment, especially as you’re struggling yourself. Sending hugs and all the best to you lovely  ♥
Caz xx

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Terri, Reclaiming HOPE August 16, 2018 - 11:33 pm

I’m so sorry your stoma is still giving you so much trouble Caz. I’m glad you got “Nurse Ratchet “ back after she insisted on giving you medication you knew you couldn’t handle…. Please take care of yourself and don’t worry about that to-do list. It will still be there when you get back to it, and by then maybe you’ll be able to determine some of the items don’t really need to be done after all.???? Sending lots of love your way!

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InvisiblyMe August 18, 2018 - 3:48 pm

I was sneakily quite proud of myself for paying that nurse back to show her I was right… as always 😉 Thank you for the lovely comment, Terri. I hope you’re managing okay this week and that you can have a relaxing weekend  ♥
Caz xx

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Ana August 17, 2018 - 1:37 am

Caz,

I’ve nominated you for “Random acts of kindness award”

https://momlifewithchiari.com/2018/08/16/random-acts-of-kindness-award-2018/

🙂 Ana

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InvisiblyMe August 18, 2018 - 3:48 pm

That was very kind of you, thank you Ana! Have yourself a lovely weekend 🙂
xx

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T. R. Noble August 17, 2018 - 2:04 am

Wha…who does this spoon atrocity !!!

That is ridiculous!!

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InvisiblyMe August 18, 2018 - 3:47 pm

Hah, yep definitely ridiculous!! Pretty evil, if you ask me! xx

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Coolncreative17 August 17, 2018 - 3:45 am

I am so sorry to hear you’ve been in A&E again like myself, sunshine.
Only thing is here they don’t give you ice cream anymore 🙁 Only plain sandwiches which I’m sick of and juice.
I really hope they are able to fix your stoma soon and have it working properly like it should be.
Sending you my love and thoughts. Xx

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InvisiblyMe August 18, 2018 - 3:47 pm

What a pair we make, we must like these hospitals too much (NOT!) Aw no, no ice-cream? That’s awful, it’s such a useful thing to have when you can’t manage solids or the majority of the food on offer. Thank you for the lovely comment – sending you my very, very best wishes  ♥ xx

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Wendy August 17, 2018 - 5:47 am

Oh dear Caz, I hate that you are still so far from your normal, sucks eggs, Good idea to carry your own spoon!
Your headache poll was quite interesting.
I also use Oxygen for my clusters, well I used to, but I haven’t gotten it here yet.
The gammaCore was first approved..in the US, for clusters, so I’m hoping it will help that too. I will get it on Monday.
I have recently started cannabis, as you know, what I use is mostly CBD, but has some THc in it. and I use a few delivery methods, I’m writing a post about that now, I hope to finish it tomorrow, nut my wrist has been hurting more, perhaps I’m overdoing it.
Hang in there my friend, sending healing thoughts and love wendy

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InvisiblyMe August 18, 2018 - 3:45 pm

Sucks eggs, I like that phrase! It’s a lot more polite than what I’d use 😉
Keeping my fingers very much crossed for you for Monday and the gammaCore! I’m sorry about your wrist pain getting worse, but you’re probably right in you overdoing things a little…easily done as it’s frustrating to feel limited in what you can do. I hope the weekend is a relaxing one for you (away from the keyboard too much). Thank you for the lovely comment – hugs to you and take care of yourself, Wendy xx

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Brigid Gallagher August 17, 2018 - 10:29 am

I am so sorry you are having such a tough time Caz. Sending you a huge hug. x

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InvisiblyMe August 18, 2018 - 3:43 pm

Thank you, Brigid. Hugs back to you! Hope you’re well and that the weekend is a good one for you 🙂
xx

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iammypath.com August 17, 2018 - 11:27 am

The priority is to take good care of yourself. All of us your blogging friends and family will wait for you, until you come back <3 So don't worry about the lists, first think of getting well. I am sorry you are in pain, of course I am not fully aware of your condition, but I will keep you in my prayers ~ today is the 17th 9.25 pm Brisbane time and will begin to pray very soon. I send you Many Blessings of Healing Energies your way. Be strong <3

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InvisiblyMe August 18, 2018 - 3:43 pm

Thank you so much, Deepa, your prayers and kind comment mean a lot to me  ♥ I also really enjoyed your growing older post, I thought you wrote that really well! Take good care of yourself too, and I hope you have a lovely weekend. Caz xx

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violaetcetera August 17, 2018 - 6:41 pm

I am sorry to hear that your Stoma still is giving you a hard time, and nobody needs Asthma. Hopefully you feel better soon, and don’t sorry about us, take care of yourself now.

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InvisiblyMe August 18, 2018 - 3:15 pm

Thank you Viola, I appreciate that especially as you have enough on yourself right now. Hope all is well at the new hospital, sending my love and very best wishes  ♥
Caz xx

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da-AL August 17, 2018 - 11:42 pm

hang in there, dear Caz — we’re all rooting for you <3

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InvisiblyMe August 18, 2018 - 3:14 pm

Thank you lovely  ♥ I hope you’re well, have a good weekend 🙂
xx

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Dennis August 18, 2018 - 8:57 am

I’ve been exhausted for the last three weeks straight, because I’ve had a lot of fun plans when I haven’t been working, and I haven’t been sleeping well. But at least it’s been fun. Now it’s off to sleep for a few hours, hopefully, before people come over for my birthday party tomorrow night.

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InvisiblyMe August 18, 2018 - 3:13 pm

I’m sorry you’ve been so exhausted – sounds like things are pretty hectic for you lately! I hope you have a lovely party and celebrate in style with those close to you! 🙂
x

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Marie Clancy August 18, 2018 - 9:27 am

Take strength from the huge range of encouraging comments and take the time you need; don’t worry about to do lists or blogging commitments….anybody worth their salt will be here patiently waiting for you!

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InvisiblyMe August 18, 2018 - 3:11 pm

That is incredibly kind of you to say, and reassuring too. Thank you Marie, I appreciate you taking the time to comment. I hope you are well, and that you have a lovely weekend  ♥ x

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K E Garland August 18, 2018 - 1:27 pm

Sending you light and love Caz <3

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InvisiblyMe August 18, 2018 - 3:10 pm

Thank you lovely – Have a good weekend 🙂

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smilecalm August 18, 2018 - 3:39 pm

my headache’s now gone, thanks!
wishing you happy
non-headache moments, also 🙂

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Lindsay August 18, 2018 - 9:54 pm

Hope you enjoyed your birthday!

I’m feeling a little overwhelmed lately – working 3 jobs (2 are just temporary side projects), trying to take care of myself (summers are always difficult), and looking after my father-in-law since his wife passed two months ago.

I need a nap 🙂

Always love your posts, and found the headache/migraine poll results very interesting. Thanks for sharing!

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InvisiblyMe August 20, 2018 - 3:40 pm

Thank you – I’m just glad the birthday is over though to be honest. I’m sorry you’ve had so much on, sounds like a lot on your plate… You’re doing the best you can do, but make sure to prioritise your own needs as well, which includes enough rest (nag, nag, nag – you get the picture!) 😉
Take care of yourself Linds, and I hope this week is a little easier on you.xx

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deepanilamani August 19, 2018 - 5:39 am

How are you Caz.. I am in the middle of praying and sending you Love, Light and Healing Energies. I wish you to Heal and recover soon and become healthy. Lots of Love from me May God Bless You <3 <3 <3

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InvisiblyMe August 20, 2018 - 3:23 pm

That’s incredibly kind – Thank you so much, Deepa. I’m actually a little better today. My best wishes and thoughts your way also – I hope this week is kind to you ???? xx

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Carolyn Page August 20, 2018 - 8:36 pm

Hi Caz,
Just a little note hoping you are feeling better. Illness sure sucks! All we have for the battle it presents is our attitude. And your attitude always amazes me… <3
xoxoxo

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InvisiblyMe August 21, 2018 - 3:53 am

Aw thank you so much Carolyn, that’s very kind of you  ♥ I hope you are doing well and that this week is kind to you 🙂
xx

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Jo August 20, 2018 - 8:39 pm

Hope your stoma settles down soon. Sounds like a right pain!

Curl up with Virgil and watch Netflix to your hearts content whilst you are feeling rough, plenty of time in the future to catch up 🙂

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InvisiblyMe August 21, 2018 - 3:54 am

That’s very true – plenty of time in future to catch up, thanks for the reminder! I hope you’re doing okay, Jo, and that your recovery is going well since your hip replacement – Take care and have a good week ahead, thank you so much for the comment 🙂
xx

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John August 25, 2018 - 2:36 pm

Just began following you, based on your comment on my blog…sorry to read about the issues you face. To your point about migraines, I live in California, where cannabis is now legal, and there are studies showing a positive response to that therapy…for those who don’t want to get locked into a pill regimen…

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InvisiblyMe August 25, 2018 - 4:07 pm

Thank you, John! I’m glad I found your blog. I hope you still like burgers & haven’t found the experience to be enough to last you a lifetime! I wish something would give a little in the UK with regard to cannabis because you’re right, there are increasing numbers of studies and also user feedback stating the positive effects of it as a treatment for various health conditions, chronic pain and headaches/migraines also. Thank you for the great comment & I hope you have a lovely weekend 🙂

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