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Mini Me Update ♥

by InvisiblyMe
A range of colourful digitally drawn arrows pointing upwards with the word 'update' in the middle.

January was a slightly very negative month for me, so I must admit I’m glad it’s over. Now we’re over half way through February and I’m wondering where the time is vanishing. With nights getting a little lighter a little earlier, I’m very much welcome to the idea of spring sooner rather than later.

My body isn’t doing well with being so cold, my brain is all over the place, my emotions aren’t so perky, I’ve had to cancel a pain management appointment because I couldn’t face it, my sleep is completely haywire and I’m just riding it out. So, what else has been going on?

Catkins Love

I’m not a cat person. I want a golden retriever. But, as I seem to have a cat who can sometimes be adorable when he’s not scratching you, I often find myself really loving this little guy. I’ve not been sleeping well at all and he’s regularly been keeping me company, where he can snooze for hours and hours. At least someone gets some sleep around here! He’s also loving his new IAMS Naturally food, that I was able to test free with the Trnd panel, so at he’s a happy chappy at the moment.

My cat snuggled on the dressing gown on the bed.

Bookish Love

One of my 2018 bucket list things was to read Anne Frank : The Diary of a Young Girl. Admittedly, I only got as far as adding three things to my list and I really need to get in the mind frame to work on it properly, preferably before the year is over… Anyway, this was a book I couldn’t quite believe I hadn’t read before. It’s one of those must-reads, and I can now say I’ve read it.

I was surprised to learn how many (several) variations of the diary there have been. It wasn’t as focused on the war and the events outside of the Frank family as I had anticipated, either. It was more of an intimate look inside the mind of a young teenager, a girl that’s coming to terms with the highly unusual and strained situation she finds herself in as she explores who she is, provides commentary on her relationships and the people around her, and discovers her passions.

Yes, I cried at the end a little, and it’s hard not to when you know why her diary abruptly ended. Anne was a surprisingly adept writer for her age and this is a book I will proudly keep in her memory and would recommend to anyone who hasn’t already read it.

A copy of Anne Frank's diary on a green blanket next to my cup of tea.

Next up was to purchase The Subtle Art Of Not Giving A Fuck. Done. Ticked off my list and I’ve made a start. Loving it already! I’ll post up a little review when I’m finished but I can tell this is one I’ll keep hold on to for future reference when I need reminders to give less fucks about unimportant stuff!

I’m A TalkHealth Blogger!

TalkHealth got in touch with me, having seen InvisiblyMe, and asked if I’d like to be a volunteer blogger. Of course, I said yes. Okay, so it’s not a paid thing and money worries are still a huge concern for me, but it is wonderful to be asked and to be able to reach out on another platform to others who may be struggling with chronic invisible illnesses. My first post – What I Want You To Know About Invisible Illness  – has just been published! You can check it out here if you’d like to 🙂

The Handy Mystery Update

A photo of the light coloured palm of my head with deep bright red blotches all over.

When I went for specialist tests in Bath, having been referred by a Rheumatologist in Bristol, I was easily diagnosed with Raynaud’s, and a little later & less easily with undifferentiated connective tissue disease. The issue of the colour of my hands was commented on (“that’s very odd”) but then forgotten in light of the other things that were then focused on. I was discharged promptly back to my local rheumatology department, and haven’t really got much further since.

However, I think the hand mystery has now been solved, at least partly. My left hand in particular, on the palm and underside, is always a strange colour; sometimes patchy bright red, other times a horrible purple. My hands (and arms) are so often absolutely freezing, but there are also odd times, like at night, where they feel like they’re burning, itchy and and bright red. Erythromelalgia wasn’t something I’d ever come across before, but it’s something I want to discuss further with someone to see if this mystery will help solve any of the other mysteries with my body. I should probably work on how to pronounce it first. Do any of you suffer with erythromelelgia?

Whatever your plans for this week, I hope you have a good one. Listen to your body, make sure to get a few smiles in wherever you can, and look after yourselves.

Black scroll divider.

Caz  

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46 comments

Erin February 18, 2018 - 4:50 pm

I’m sorry you are feeling low, and going through a rough patch. Your cat looks very cute though, and that book sounds awesome.

Sending lots of hugs. ❤

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InvisiblyMe February 20, 2018 - 3:58 pm

Thank you, Erin, I appreciate the hugs – the same to you my lovely xx

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Wendy February 18, 2018 - 5:12 pm

Congratulations on your recent blogging job! That must have felt good, to actually be contacted by them. I’m sorry you are going through so much currently. It seems to me that you do an amazing job of keeping somewhat centered, despite everything painful in your life. I’m going to read both of those books. Big hugs. Wendy

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InvisiblyMe February 20, 2018 - 4:06 pm

I felt pretty honoured they liked the blog and wanted me to write a little for them, so even though I don’t get paid for anything it’s a good thing to do to continue raising awareness and sharing experiences. I like how you say “somewhat centred” – I like to think I just veer 15 degrees off centre most days, and other days I’m just off the radar entirely! But still, we all have these times, and it’s important to talk about it. Both of the books are great in very different different ways – I hope you enjoy them! Thank you so much for the lovely comment, Wendy, it’s much appreciated 🙂
xx

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Wendy Bloom February 20, 2018 - 4:11 pm

I know what you mean by being off the radar completely… Happens to me more often than I’d like to admit. I hope that your health starts improving. I know Crohn’s disease, and UC can be VERY tough to get under control. It must be so discouraging for you to be having added health problems. The Ulcerative Colitis is definitely enough to deal with on it’s own. Take good care of yourself, and remember how amazing you are!

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Natalie | Surviving life's hurdles February 18, 2018 - 7:12 pm

I’m so sorry that you haven’t been well over the last month or so. I’m glad you’ve been finding enjoyment through blogging and your great reads though! I have no idea about Erythromelalgia but I hope you find some answers soon! Xx

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InvisiblyMe February 20, 2018 - 4:17 pm

It’s a completely new one to me, too, the Erythromelalgia. Thank you for a lovely comment and your support as always, Nat. I do hope you’re doing okay…xx

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Laura February 18, 2018 - 9:30 pm

Cats are weird. You can’t help but love them 😛

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InvisiblyMe February 20, 2018 - 4:17 pm

Weird is definitely right!!

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Viola February 18, 2018 - 9:40 pm

Yes, Anne Frank’s diary is an amazing read. Read it when I was about her age, and it made me realise my teen problems weren’t so bad, compared to her life.
Erythromelalgia? Never heard of it. I really hope you find a way to deal with it!
Hugs, Viola

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InvisiblyMe February 20, 2018 - 4:19 pm

Anne Frank’s diary is definitely an eye-opener, especially her attitude through her whole situation. I’m very glad I read it.
Thank you Viola – take care and I hope you are keeping well 🙂
x

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Buffy Devane February 18, 2018 - 9:59 pm

Lovely piece on the TalkHealth site, Caz… positive whilst nicely down-to-earth. 🙂
I’m sorry the sleep problems are taking their toll — I do empathise! Grr.
But yes, spring’s coming… keep up the good work!

And thanks for the heads up on the Mark Manson book. 😉

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InvisiblyMe February 20, 2018 - 4:20 pm

Aw I’m so glad you liked the TalkHealth piece, thank you so much for taking the time to have a look! The Manson book is definitely a breath of fresh air so it’s one I’d recommend giving a try!
Thank you for the awesome comment – have a lovely week 🙂
x

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KEGarland February 18, 2018 - 10:56 pm

You’re the second blogger to have read and recommended The Subtle Art of Not Giving a F*ck. Think I might have to add it to my list now.

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InvisiblyMe February 20, 2018 - 4:21 pm

It seems quite popular, and I can see why. I’ve read books along these lines before but I’m really enjoying this one so I’d definitely recommend adding it to your list & checking it out 🙂

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Shannon Paige February 18, 2018 - 11:23 pm

I am sorry January was so hard! It’s always a tough one for me too, with the holidays being over and winter feeling oh so long… I am looking forward to spring too but also wondering where the heck time is going as well! I read anne frank in school forever ago, but knowing me I probably skimmed it and looked up cliff notes online. lol. Right now I am reading “the marriage pact” which is an edge of your seat kind of book, can’t put it down!

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InvisiblyMe February 20, 2018 - 4:24 pm

Sounds like you definitely get where I’m coming from with the dreams of spring & the scary realisation that time is going so fast in retrospect!
Made me chuckle about the cliff notes – I’m sure most of your class probably did that too! I’m sad we were never given Anne Frank’s diary as a reading subject, it seems like such an important book. Is The Marriage Pact by Michelle Richmond? Hope you enjoy it right to the very end – I’ll add it to my TBR list, thank you! 🙂
xx

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trippingthroughtreacle February 19, 2018 - 12:07 am

Caz, you sound like you have been so busy despite not feeling well at all. I’m glad your cat’s been keeping you company. I have one who is more like a dog, follows me everywhere! She’s great for company on sick days. I also love Anne Frank’s diary, so well written and sad. I guess she got her wish of being a famous writer, but the reason why is heart breaking. Also congrats on your blogging job 🙂 very well deserved ? Xx

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InvisiblyMe February 20, 2018 - 4:30 pm

I wish my cat were more like yours, to follow me & keep me company more often, rather than when it suits him or when he wants food!
Yes, she did reach her aspiration of being a writer, in the most awful, heartbreaking of ways. I couldn’t believe it was written by such a young girl at first, then a young lady by the end of the diary, given as adept she was in her prose, especially when you consider it was a personal diary written under such awful circumstances.
Thank you for the congrats – it’s not paid, so money is still a huge worry for me, but it’s lovely to be asked and be able to raise awareness and share experiences on another platform to reach others with invisible chronic illness too. Thank you for such a lovely comment & the support, Jen, it’s much appreciated 🙂
xx

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dtills February 19, 2018 - 1:45 am

Congratulations on the talk health site! And, I can’t wait to read “the subtle art of not giving a fuck!” Please do feel better soon my friend! 🙂

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InvisiblyMe February 20, 2018 - 4:33 pm

It’s not a paid thing with TalkHealth but it’s wonderful to be asked & get the chance to share my experiences and raise awareness on another platform. Thank you so much for your kind words, and enjoy the book (it’ll get you giving less fucks about the unimportant stuff before you know it hopefully!) Take care and have a lovely week xx

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lifeofangela February 19, 2018 - 4:15 am

It’s nice to have these little updates! I’m sorry January sucked, here’s hoping things will turn around ?
I read The Subtle Art of Not Giving a F*ck last year and loved it! It’s so funny, and so great at giving you those little reminders of not sweating the small stuff ?

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InvisiblyMe February 20, 2018 - 4:34 pm

Thank you Angela – I’m sure things will pick up again soon. I hope you have a lovely week, and I’m glad to hear you enjoyed the book too! So far I’m finding it very relatable & good for a few chuckles 🙂

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Liz February 19, 2018 - 5:56 am

I’m looking forward to spring coming and after that, for warmer times. Spring bulbs are coming out in my border and so I am seeing my Snowdrops for the first time this year, as they did not flower last year. (Planted slightly late.) I am looking forward to the display, especially if it the last time I could see it, if I find my new place in a new area. 🙂

I like to read books now and again and last year I started to read different things then normal. This year, I have Ernest Hemingway, A Movable Feast. I have only read the introduction to this book at the moment that the family introduce. This book is original work apparently of stuff that was taken out in past books and some things that never got published.
Anne Frank has been also another book I always keep saying I will stick my head into one day, so maybe this could be my next read.

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InvisiblyMe February 20, 2018 - 4:39 pm

Aw, snowdrops are very pretty – I saw a few somewhere when I was out in the car the other day, so I hope you get to enjoy them in their full glory this year! Can’t say I’ve ever read A Movable Feast, nor heard of it admittedly until you mentioned it – you’ll have to let me know how it goes after the intro.
As for Anne Frank’s diary, that’s definitely one I’d recommend as one of those must-reads; I got through it pretty quickly. Thanks for the lovely comment Liz, I hope you have a good week 🙂
xx

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Hannah February 19, 2018 - 6:56 am

Ah Caz, I love this. I’m so sorry that you’ve not been feeling great buuuuut you do seem to be keeping yourself busy! And absolutely amazing news about the blogging!! So brilliant that you’re going to be able to connect with even more people! I hope things start to perk up a bit once spring is in full wack. The cold weather does seem to cause mayhem for our bodies! Xx

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InvisiblyMe February 20, 2018 - 4:41 pm

Cold weather makes me grumpy, I think my body is fed up with it! Do you find the same with the cold, or don’t you mind winter/cooler months? And thank you so much for the lovely comment, Hannah! 🙂

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Suzanne Cox February 19, 2018 - 8:59 am

Hope that you start to feel better as February goes on and we get into Spring, I think a lot of people (illness or not) have found it to be quite a harsh winter this year. The last couple of days where I live have been lovely, but in typical Monday style (is also inset day), its raining today. Your cat looks lovely, think animals (we have a dog who eats everything and started today by being sick in the conservatory), have a way of knowing when you are below par.
Big well done on your volunteer opportunity, you have done so well to get that already. You must be so pleased.

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Anita Neilson February 19, 2018 - 12:23 pm

Great post. There will be better days ahead

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Hopeless Wonderer February 19, 2018 - 12:49 pm

Aw man I really need to read the diary of Anne Frank as I’m going to Amsterdam in may and obviously her room is there, don’t know how I feel about crying though ahah!

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InvisiblyMe February 20, 2018 - 4:42 pm

Amsterdam would be amazing to visit, and going in February gives you plenty of time to read the diary (I found it to be pretty quick reading) – crying is optional, but being affected by it emotionally is guaranteed!
xx

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Emma (Not Just Tired) February 19, 2018 - 5:31 pm

So sorry to hear you’ve been having a tough time. These books sound great. I remember reading Anne Frank’s diary when I was a teenager and it’s such an emotional read. Congratulations on your new blogging venture ? Wishing you better days ahead xx

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InvisiblyMe February 20, 2018 - 4:44 pm

The TalkHealth thing isn’t paid but it is lovely to be asked & to be able to reach out to more people on a different platform. Did you read Anne’s diary as part of a school project? I wish we’d been made to read it, it seems like such a poignant novel. Thank you for the kind wishes – I hope you have a good week Emma! 🙂
x

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Colors of my Life blog February 19, 2018 - 5:55 pm

Congratulation on getting invitation to write to people who don’t know about your illness. I pray for your quick and swift recovery, as for sleep disorder, try to drink cold milk, it works well.

Sleep tight and leave the phone on the side 😛

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InvisiblyMe February 20, 2018 - 4:44 pm

Aw haha, thank you! I do like milk (good for calcium as I have osteopenia too) – will have to give that a go tonight! 🙂

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mistermuse February 19, 2018 - 11:15 pm

THE DIARY OF ANNE FRANK was also made into a movie in 1959. I’ve seen it, and it’s excellent. I haven’t checked, but it’s probably available online.
BTW, I visited the Anne Frank house in Amsterdam while on a European vacation many years ago — it’s a strange feeling to actually be in the same place where she & her family hid during WWII.

Best wishes.

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InvisiblyMe February 20, 2018 - 5:18 pm

I can imagine visiting the place and seeing the area she was in when she wrote her diary would be odd to say the list, quite haunting even. I feel quite ignorant now as I must admit I did’t know it had been made into a film! I’ll have to check out the Internet for this – thank you for sharing and letting me know! 🙂
x

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Sue Jackson February 21, 2018 - 9:47 pm

Congrats on the TalkHealth gig! Looks like you are off to a good start with it.

I am also a book lover (I write a book blog, in addition to the chronic illness blog). I’m afraid if I leave 2 links, my comment will be seen as spam, so I’ll just tell you the book blog address, in case you are interested: bookbybook.blogspot.com

And, YES, I do have EM (erythromelalgia) in addition to ME/CFS! It is considered a rare disease but seems to be more common among those with ME/CFS and fibro and Lyme, probably due to the autonomic nervous system dysfunction. I get my red, swollen, burning parts on my toes, mostly, and only during the winter (which is less common – most have it all year-round). I endured 3 very painful winters, but this winter I have been able to wear socks and shoes again – yay! I put my EM into remission using heat desensitization. Your case is complicated since Raynaud’s and EM generally require the opposite care, BUT….heat desensitization also works for Raynaud’s and there are studies to support that.

http://livewithcfs.blogspot.com/2017/12/heat-desensitization-erythromelalgia-in.html

That post explains it all, with links to other resources. As an update, I wrote that in November. It’s now February, and my EM is still in remission. It did flare up twice this winter, but as soon as I felt that telltale burning on my toes, I immediately started hot water soaks & put it back into remission within a couple of days.

Good luck! That extra pain on top of chronic illness can get pretty unbearable – I hope you find relief, too!

Sue

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InvisiblyMe February 22, 2018 - 4:37 pm

Thank you so much for sharing this, Sue – I’ll check out your links now and bookmark them too. I’m sorry you have to deal with so much, but I’m glad you’ve found something to help ease symptoms at least of the EM. Thanks again for the comment and the information, it’s very much appreciated! 🙂
Caz x

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3sistersabroad February 22, 2018 - 2:55 am

Hi first some hugs xx I went and checked out Erythromelalgia on google….I had never heard about it till this post. but then it says its rare. Much love to you. I can’t wait for the review on that book….:) Cats are gorgeous my daughter has 3. I have 2 dogs and one doesn’t like small creatures so having a kitty here would be a no no. It is lovely how they curl up and sleep…..and sleep….xx

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Caz - InvisiblyMe February 22, 2018 - 1:14 pm

I hadn’t heard of it either before digging around Google to try to figure out the mystery. Quite an odd one, it’s certainly off-putting to look at the palm of your hand and for it to usually be purple!
I will swap you your two dogs for my cat – just let me know! It’s odd that some dogs & cats can live together and get on so well, but like your one dog that doesn’t like small creatures, I don’t think my cat would appreciate a dog coming into the mix and ridding him of his only child status! Thank you for the hugs and lovely comment!
xx

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3sistersabroad February 22, 2018 - 2:58 am

Oh I have book marked your post on Talk Health….xx

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gaillovesgod February 25, 2018 - 12:17 am

Sorry you had an unpleasant week, Caz.. Yucky is yucky, and I’m sorry things are yucky.
Your cute Happy Chappy looks like he would give a good head rub… loll
Of All the time I’ve seen different movie about The Diary of Anne Frank, it has been a good while since I read the book. Maybe I’ll add that to a list. I’m not really a reader as I wish, but God’s been giving me materials to read all over the place, and allowing me to follow through. Surprise. )
That was a great article. Thanks for sharing that. There is someone reading that who IS alone or in need of some info or someone who understands, and they will find it your blog. I know glean all the time!
I’ll be praying about your Hand mystery.

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InvisiblyMe February 25, 2018 - 4:48 pm

Reading is such a wonderful thing to be able to do, and I’m glad there are endless books out there to choose from – I hope you find the time and energy to read through some of those on your list! I’m glad you liked the post, and thank you for your kind wishes & lovely comment. Take care and have a lovely week ahead 🙂 .
xx

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rhc55 March 5, 2018 - 11:26 pm

You sound like a very brave lady, and a wonderful role model for others out there with invisible illnesses. From personal experience I know you have to live with someone to see and understand the real pain and suffering caused by illnesses not acknowledged by people generally and often even by the medical profession, as an effort is made in front of others, or you only go out on good days. I applaud your taste in books, I’ve never had the courage to read Anne Frank’s Diary as I know it will be very upsetting, but perhaps one day I shall add it to my reading list. It is good you have such a positive approach to your medical problems – don’t let them get you down.

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InvisiblyMe March 6, 2018 - 4:08 pm

Thank you so much for such a wonderful comment – I really do appreciate it! And as for Anne Frank’s diary, it wasn’t quite what I’d expected and I would certainly recommend considering adding it to your reading list. Thank you again for taking the time to read & comment 🙂

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