Month: Jun 2022

Activities · Bag · Chronic Illness · Personal

What’s in My Bag – Chronic Illness Edition

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I feel maybe I am a little late to the party on this one, but I am sure that once upon a time especially via the world of vlogging what’s in my bag was a thing. Either way today is the day I am going to share with you what’s in mine – all of course with that special chronic illness twist.

So, first things first I should probably explain that I have different handbags with different items depending on where I am going and who I am with. The bag I am going to talk about today is the canvas one I use when going for bigger trips such as hospital visits, or trips that require time outdoors, which a) is often carried by someone else or is stored in a car, and b) includes items which change from being carried to being on me in person.

So, let’s take a look…

Sun hat, sun tan lotion and sunglasses

Now that I have been diagnosed with UCTD with a lean towards Lupus, I have to be incredibly careful in the sun even when it is cloudy. This means being ready with an accessory or two that can keep me protected from the sun such as a sun hat and sunglasses. I also always need to wear sunscreen, so it is vital to have some top up ready.

Medication

Depending on the length of the trip, I may need to take my medication with me a) to take it, and b) to show to my consultant if at hospital. I may also carry pain killers for those unexpected flares.

Pen and paper

I carry these items with me in order to keep a record of any important notes I need to make or to act as a reminder for things I need to relay to others. My memory can be a bit hazy at the best of times, so being able to jot stuff down is a must.

Photo by Pavel Danilyuk on Pexels.com

Mask and hand sanitiser

Whilst there may be a minority in this country now of people still wearing masks, I am happy to say I am still one of them. Hand sanitiser was always something I used before covid and it is something I still use now. Chronic illness life means it is vital for me to be safe regardless of anyone else’s opinion, therefore these items have a very solid spot in my carrier.

Snacks

I always like to carry a small snack with me ready for those drops in blood sugar and/or blood pressure. It is also a quick fix when I need a little energy boost.

Walking stick

In the same way some people may need a wheelchair at times, I need a walking stick. This tends to be if I have heightened pain, or am struggling to get moving. My particular walking stick is foldable therefore is handy to pop in with the rest of my bits ready for if and when it is needed.

Ear defenders

Ear defenders are most handy for me in a car scenario or if I were to say be at someone else’s house. This is because they can block out any sounds which may be distracting and allow me to try to nap or at the very least rest in the presence of others.

Other items

Other items include hair bobbles, money and/or cards, sanitary pads.

Here we have it the contents of my canvas. As I mentioned earlier these items change based on where I am going and who I am with. The reality is if I was on my own I wouldn’t be able to carry all these items, so tweaks would need to be made.

What about you? What’s in your bag?

Sarah xx

Chronic Illness · Invisible Illness · Sleep

Why Sleep is So Important – My Reason Outside the Science

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I don’t know about you, but sleep is a rather contentious subject in my household actually in my extended network too. By the majority – meaning everyone other than me – it is seen as something that happens at set times, which may or may not be altered in line with events going on in life.

The theory of going to bed at a set time and getting up at a set time, with no trips to the land of nod outside of this sounds ideal – well maybe if it wasn’t for that little thing called chronic illness.

My sleep pattern is awful, which quite frankly is strange when you think that the majority of my conditions include fatigue as one of the symptoms. When your fatigued you think your head would hit the pillow and you would be away, snoring or perhaps heavy breathing into the abyss. Yet, my head hits the pillow and nothing and of course this only exacerbates matters because the more you think about it the more you can’t. That and the fact I tend to be in a lot of pain. Of course, when it comes to getting up it is the reverse and I am exhausted unable to get out of bed at all. And this is where my problem starts.

I will be honest right now I do not get up at a ‘normal’ getting up hour. Quite simply I can’t. A) because of tiredness and exhaustion, and B) because of other symptoms. However, my household, my extended family, my neighbours, in fact maybe everyone who knows me does. So straight away rather than be seen as someone who is unwell dealing with unpleasant symptoms which means I cannot act in the ‘normal’ way like others, I am seen as lazy or idle.

So, the noise begins of people getting on with their routines because I am in the wrong for not living in the conventional timescales of the day. The noise begins and I get woken up, woken up from the limited forty winks I may have already had, and so the irritation starts. I complain people are too noisy, other people complain I should get up earlier like I am a teenager who has pulled an all nighter. The reality is no one is in the wrong, we are just living in very different bodies with very different needs.

Photo by Acharaporn Kamornboonyarush on Pexels.com

I guess my frustration lies in a number of factors, a) frustration at myself not to be able to be like everyone else and just get my arse out of bed and feel fine, and b) the fact that people don’t understand that a lack of or interrupted rest for me is not the same as it is for them. Sure you don’t need to be chronically ill to know that a crap night can make you feel cranky, foggy headed, unmotivated and generally bleurgh, this is across the board, but with chronic illness it can be the trigger that takes a possibly good to middling day to an awful one as the domino effect of symptoms start.

I am not going to go into all the scientific reasons why getting some shut eye is important because there are many a website which will tell you this (probably myself included somewhere), but I am going to talk about why napping is so important to me outside of that and it is simple; sleep gives me respite.

Battling on-going symptoms which at times can be constant is exhausting both physically and mentally, and if indeed I cannot hit that delete button and make it disappear, it is paramount to at least hit the pause. To let my mind and body stop for a short while.

During times of intense flare-ups catching some zzz’s is an escape. I don’t have to suffer anymore. When I am asleep I don’t have to be in pain, or feel poorly, and my body doesn’t have to battle to keep going – it can rest. If it is well rested then perhaps it will give me respite for the following day too, or at least to begin with and that in the hard days is worth so much.

With this in mind, I will take it when I can even if this means I do have to do it outside the considered reasonable bedtimes hours. I don’t sleep in because I am lazy, I do because if had enough of without interruptions it gives me a fighting change of a better day, it gives me back a bit of me.

How is your bedtime pattern? Do people find your routine outside of the norm?

Sarah xx

Activities · Books · Hobbies · Review

Bits, Bobs and Books

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Wow, it has been a hectic illness driven month I have to say. So much so I wasn’t able to blog last week as planned, and to be honest I didn’t think I was going to be able to this week either. But, here I am.

Let me start with a few bits and bobs health wise. The last few weeks really have been a domino effect of one set of symptoms setting off another, and one condition flaring the second another stops. It has prevented me really being able to get online and in all honesty blogging seemed like a far flung dream. Of course this is as always the nature of living with multiple chronic illnesses, and I won’t bore myself or anyone else on the difficulty of living with so many conditions. Not today anyway! 😉 (If you are interested however, here is a previous blog post I wrote on The Difficulty of Living with Multiple Chronic Illnesses – My Top 5 Dilemmas here).

Instead today I want to focus on something outside of feeling so rubbish, and what better way than to talk about some of the books I have read so far in 2022. Reading is a great form of escapism for me, although at times certain symptoms can make the actual act of reading extremely challenging and at times impossible. With that said, I am proud to be a book worm and am always on the look out to add books to my TBR list even if it does take a small age to actually read them.

So let’s take a look at some of the books I have read in 2022 so far…

The Perfect Guests – Emma Rous

I actually read The Perfect Guests quite early on in the year and have to say it was a fantastic book to kick start the year ahead. What first attracted me to this book was the book description about it being set on a murder mystery night – which as an Agatha Christie fan has always been something I would love to do. Whilst part of the book is around this set-up, it also jumps between the past and the present which I personally love. FYI my fellow chronic illness people – you may want to read on more energy filled days so as not to lose your way on the whole host of twists and turns you will encounter. In addition to the rollercoaster of events the setting of the mysterious Raven Hall Manor fits the book perfectly.

Ideal for thriller lovers and fanatics of twists and big reveals. For me this book is a 5 ⭐ read all day long.

Books read so far in 2022

The Baby Group – Caroline Corcoran

I have to confess this is another thriller style book – can you guess this may be one of my favourite genres? However, whilst The Perfect Guests was a mix mash of time lines, The Baby Group couldn’t be any more modern day life inspired. Without giving any spoilers, The Baby Group is about a group of friends who you may have guessed already, have met through a new mothers group, whereby one of the women has had a video from her past leaked to everyone she knows – but who is behind it?

What I liked about this book is all the modern day references from the impact of social media to the importance people put on how they appear to others. The book has you guessing throughout with regards to who is behind the scandal and who you can really trust, and the ending is brilliant. I did struggle at times with the style of the writing, but that is personal preference and I would still recommend. I give this book a solid 3.5 ⭐.

Strangers on a Train – Patricia Highsmith

We have moved a bit old school now with this next book read, focusing on a classic. I first became aware of Strangers on a Train via the Alfred Hitchcock film, however the book by Patricia Highsmith (which may I add was written first) is filled with differences. Slight spoiler – The plot is quite a simple one – two strangers meet on a train, each of them have someone in their lives who let’s say they could do without. A suggestion is made that they could help each other out by bumping off each others ‘problem’ person without worrying about alibis or motives. A throw away plan until one of them does just that.

This book is such a mixed bag for me because I actually love the idea behind the plot. The first half of the book is engaging and I was really keen to see where this plan by two strangers was going to lead. Then the second half of the book happened and my desire to keep reading waned. I think a big part of this was I didn’t gel to any of the characters and it seemed to drag on with not a lot actually going on. The style of writing was also quite hard for my fatigue addled brain to comprehend at times, but hey it is a classic.

For me, I would rate this book a 4 ⭐ read for the idea itself, however I wouldn’t be in a rush to read it again.

New Beginnings at Rose Cottage – Erin Green

Ok, ok I am going to move away from thrillers and suspense and move to romance, chick lit. I have actually written about this book before and I am going to write about it again because I LOVE it. This book installs such hope for me in times when I feel I am lacking because there is just an overwhelming sense that things can get better.

Set in Brixham, Devon this book is about three solo holiday makers sharing a holiday cottage who each have their own stories and struggles back home, yet come together and build a beautiful friendship and re-discovery of their own lives. The characters are lovable, the setting is picturesque, and the story is beautifully packed with simplistic moments of pure joy. There are many moments in this book which I can sympathise with in my own life which is maybe what makes it so poignant for me , alongside moments of fun, laughter and lots of ice cream!

No doubt one of my favourite books of all time, so I have no choice but to give it a 5 ⭐ review.

Here we have it a few reviews of some of the books I have read so far in 2022. What books are you currently reading/listening to or have read/listened to this year? Are reading book reviews something you enjoy, if so let me know as I would love to do more in the future.

Sarah xx