What’s in My Bag – Chronic Illness Edition

30th Jun 2022 memyselfandchronicillnessLeave a comment

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.

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

Activities · Books · Hobbies · Review

Bits, Bobs and Books

3rd Jun 2022 memyselfandchronicillnessLeave a comment

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.

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

Activities · Chronic Illness · Films · TV

Film and TV Titles That Reflect Chronic Illness

14th Apr 20229th Jun 2022 memyselfandchronicillness7 Comments

Hi lovely people, today we are doing a fun post which is a follow up from my previous post about songs/song titles that reflect chronic illness (which you can find here). This time however, the focus is on film and tv.

I recently reached out on my social media to ask people to give me film and/or tv programmes which reflect their lives with chronic illness. Some of the picks are based on the film/tv title itself whereas others are reflected in the plot.

As with the songs post this has produced an array of answers some serious, some more light-hearted, there is no right or wrong, they are individual choices made by myself or people who volunteered answers. I hope you enjoy…

Films/TV

A Million Little Things
Afflicted
Alone in the Dark
Awake
Battle Weary
Brain on Fire
Casualty
Death Becomes Her
Die Hard
Enemy of the State
Frida
Gone with the Wind
Hurt Locker
Impossible
Inside Out
Invasion of the Body Snatchers
John Q
Lost
Love and Other Drugs

Photo by Photography Maghradze PH on Pexels.com

Not Going Out
Pain Warriors
Pieces of Her
Prison Break
Room
Royal Pains
Scream
Stand By Me
The Abyss
The Big Sick
The Walking Dead
Twenty Four Seven
Twilight Zone
Unrest

What do you think of the list? Are there any you would like to add? If so leave a message in the comment section and I shall add it to the list.

Sarah xx

Activities · Budget · Christmas · Chronic Illness · Tips

Christmas on a Budget

18th Nov 2021 memyselfandchronicillness1 Comment

It’s that time of year again folks – it is Christmas blog post time.

Christmas of course, is a different experience for us all and there are many people who do not celebrate this particular holiday. Even for the people that do finances can always be a thorn in the side especially within the chronic illness community. Many chronically ill people are not able to work, and even if they do it is not necessarily full time, therefore having excess funds to spend on Christmas is a big ask.

This doesn’t mean however, we shouldn’t be able to enjoy the holidays if that is what we choose to do. So today I thought I would share with you my top tips on how to celebrate Christmas when on a budget.

Presents /Gifts

Set your limit – My first tip when it comes to gift buying is to set a present limit with your friends and family. By telling your loved ones you have a limit this year you are giving them a chance to choose if they too want to match your limit so there are no awkward feelings when the swap comes. Of course, people may still choose to spend more on you, but that is their choice, you are under no obligation to do the same. Set your price point for each person and stick to it.

Make gifts – If spending significant money is too much of an ask, then why not think about making a gift instead. You could buy a batch of crafting materials relatively cheap and make everyone the same gift, altering it slightly to match people’s individual personalities. Handmade gifts are a lovely way to express kindness to your loved ones, and are unique to you. For low cost/low energy gift ideas for others check my previous blog here.

Send e-cards – Writing out Christmas cards can be a laborious task for any person and they can be costly – especially if you are posting them out. Nowadays, there are many websites where you can create e-cards, many for free – all you need to do is email them.

Decorations

Organise a switch and swap – Do you feel sick of using the same ideas every year for your décor? Then one idea would be to switch and swap with others whereby you give them an item (or multiple items) that you no longer want in return for an item or items they no longer want. You could totally transform your winter wonderland without having to spend a single penny. (This is also an idea you can use with unwanted presents.)

Buy reusable items – If you really need to make purchases always look to buy items that can be used year on year. Whilst this may get boring it means you are doing your bit for the planet, as well as your bit for your bank account.

Take to discount stores/charity shops – Don’t always believe you need to go to big branded shops or websites to buy ‘quality’ items – they are many beautiful, well-made and more importantly bargain items for Christmas in discount and/or charity shops.

Food

Plan your meals – Although Christmas day is indeed one day, there are 12 days of Christmas and therefore an added pressure to splurge out on many festive favourites. With this said there is no set rule to say you need to eat this on Christmas day or that on New Years Eve – think what is realistic for you. Maybe eating your normal meals with one or two added treats thrown in is more appropriate, and by planning your meals you are less likely to go off course when it comes to food shopping.

Choose cheaper brands – Depending where you are in the world there are now many ‘cheaper’ supermarkets around. Don’t be lured in by the luxurious adverts on TV, there are many tasty treats of value own products that will hit the spot just as much.

Make your own – One of the things I am always tempted by at Christmas time is all the sweet treats. Predominately cakes, cookies, desserts – trust me the list goes on. These bought individually however, are extremely pricey. So why not make your own, the raw ingredients will be cheaper and will probably go further, and it is a great bit of fun to have along the way.

Other Things to Consider

Things to do – Finding activities to do at Christmas is exhausting for chronic illness sufferers anyway, finding low cost activities can be even harder. Check out my previous post here on my top 5 Christmas Activities for Chronic Illness Warriors. For Christmas film ideas why not read my suggestions here.

Final Tip

My final and probably most important tip about spending Christmas on a budget is to be honest not only to others, but yourself too. Evaluate your circumstances and remember Christmas itself is one day. The season is about so much more than money or possessions, it is about being kind, and that includes being kind to yourself.

What tips can you offer to people on a budget this year? How will you be spending the festive season?

Sarah xx

Activities · Chronic Illness · Hobbies · Mental Health · Online · Tips

Interactive Online Activities – My Top Picks

7th Oct 2021 memyselfandchronicillness4 Comments

Life for a chronically ill/disabled person can be extremely lonely, especially if you are like myself and spend the majority of your life at home, stuck indoors. Of course the last 18 months or so, the world has become more accessible online with many an activity just a few clicks of a button or touch screen away.

The thing is whilst the world may be opening back up to various degrees, for many of of us who are chronically ill/disabled, nothing changes. Outdoor socialising isn’t an easy feat, and a lot of the time isn’t practical due to symptoms and trying to stay safe in current times.

In one of my posts a few weeks ago, I touched upon the use of interactive online activities as a source of meeting new people and staying connected and today I wanted to share my top activities to do online.

Before we continue though I have to say since deciding to write this blog post a few weeks ago, I am rather disappointed to see how many activities which were online through lockdown, have been dramatically dropped and replaced in favour of real-life meets. Yet again that chance to make the world more accessible seems to have missed it’s mark and as a result chronically ill/disabled people are missing out.

Nevertheless, there are online activities out there – they just take some finding and a lot of patience! As well as some basic online searches I would also recommend looking through your local libraries, (I am really happy to see that my local one has kept up it’s online groups to support the most vulnerable in the community), and through resources such as EventBrite. If there are any online things you were part of before, or were something you would of be interested in, that have now disappeared – why not reach out and ask why? Whether they get them up and running again is one thing, but at least you can make them think about accessibility and the importance for everyone to be included.

Online Activity 1 – Support Groups

Depending on your specific condition and the advice you have access to, you may find specific charities or online communities now run online zoom support groups. This can be a great way to connect with people who have the same or similar conditions as you, and provide a network of people experiencing the same struggles (and of course triumphs).

If a group scenario is not your thing, remember there may always be an option of 1:1 sessions, or if you need support with your mental health online professional counselling could be a great alternative.

If you can’t find support groups in your specific condition, you could always reach out to charities directly and ask if they offer such services, or know of anywhere else that does. Still no luck? Why not reach out to others on social media who you may have made connections with and see if it would be something they would be interested in. It doesn’t even need to be in a speaking capacity – it could simply be making a time when you are online at the same time to swap messages and make meaningful connections. Please remember though never give out your personal details to strangers – even ones that appear friendly on the surface!

Online Activity 2 – Hobby Based Groups

We all have a hobby of some sorts no matter how obscure it may seem, and now with the use of online communications you can take part in them from the comfort of your own home, with some much appreciated company and helpful tips. Hobby groups can include:

Book clubs
Photography
Crafting
Gardening
Singing (with the sound off if preferred!) etc…

Online Activity 3 – Presentations, Lectures and Talks

Now I know that sitting and listening to somebody talking is a sure fire way of having some level of fatigue, but if it is something that interests you it may be more tolerable. Watching real-time lectures and talks can actually be a really good way of feeling connected especially if there is a way of asking questions at the end.

If it is too much however, remember that most of these things are recorded for you to view at a later date which would be more convenient in line with your symptoms and energy levels.

Talks could be about a variety of different topics including:

Travel – Discovering new places around the world from your sofa
Art – If you are an art fan like myself there are many online events/lectures provided through art gallery websites around a certain theme or painting
Disability/Chronic Illness
Study/Career Focused

Online Activity 4 – Quizzing

I am not much of a quizzer, but I do think quizzing is a great way of keeping our minds active and can be a great source of interaction. This can take place in the form of online board games playing against others, interactive pub quizzes or holiday themed challenges.

Online Activity 5 – Meditation/Mindfulness

Although meditation and mindfulness are very much solo events, you may find being in an -albeit quiet – group beneficial. This is because it can help to give you focus and motivation which you may lack trying to do it on your own. It can be especially helpful if the sessions are guided as it will help to focus the mind more easily and perhaps encourage discussion afterwards.

Here we have it my top picks for online interactive activities. On a slightly separate note I wanted to point out as an introvert, I really struggle engaging with others because of certain personality traits. This is only made harder by my chronic illnesses and the symptoms they bring. However the beauty of online engagement is I can be as present as I choose to be. Being online you can pick events that match your individual preferences with little interaction, you can turn off the audio or the picture if you don’t want to participate, and to be quite frank you can exit stage left if it gets too much. The point is it is an option if you need one.

What online activities do you like to participate in? Are they certain ones you would like to do, but haven’t found? Are there ones you would like to recommend or maybe you run an online group yourself and would like to share some details? Chronic friendly ideas would be much appreciated.

Sarah xx

Activities · Chronic Illness · Hobbies · Music · Songs

Songs/Song Titles That Reflect Chronic Illness

23rd Sep 202125th Nov 2021 memyselfandchronicillness5 Comments

Hi Everyone – this week I thought we would have a bit of fun, so a few weeks ago I asked people on my social media to name a song or song title which reflected their life with chronic illness.

I had some great answers which I have shared below with some of my own. We have a combination of light-hearted picks alongside ones with more meaning. Some ballads, some upbeat and some a little of something in-between.

Remember some of the picks have been influenced by the title of the song, others the meaning behind the song itself.

Songs/Song Titles

Annie Lennox – A Thousand Beautiful Things
Avril Lavigne – Warrior
Bon Jovi – It’s My Life
Chumbawamba – I get knocked down, but I get up again (Tubthumping)
Daniel Bedingfield – Gotta Get Thru This
D:ream – Things Can Only Get Better
Elton John – I’m Still Standing
Faithless – Insomnia
Foreigner – Cold as Ice
Gloria Gaynor – I Will Survive
Goo Goo Dolls – Best of Me
Imagine Dragons – Believer
Jimmy Cliff – I Can See Clearly Now
Journey – Don’t Stop Believin’

Photo by Dominika Roseclay on Pexels.com

Katy Perry – Roar
Labi Siffre – Something Inside So Strong
Lady Gaga – Million Reasons
Leslie Moslier – Get Better
Pink Floyd – Comfortably Numb
Queen – I Want to Break Free
Rachel Platten – Fight Song
Red Hot Chili Peppers – Can’t Stop (dedicated to my Tourette tics)
Rob Thomas – Her Diamonds
Taylor Swift – Out of the Woods
The Beatles – I’m So Tired
The Cranberries – Zombie
Tom Petty – You Don’t Know How It Feels

Did you enjoy the picks? Are there any you would add to the list? If so, leave a comment and I will add them to the list.

Sarah xx

Activities · Happiness · Mental Health · Positive Affirmations · Self-Esteem · Stress Management · Tips

I Am Me: Positive Affirmations and Happiness Tips

6th Aug 2021 memyselfandchronicillness5 Comments

Today’s blog post is a little different from what I had originally planned. This is because the last week or so for me has been filled with many days of illness and symptom flare-ups, and therefore today I wanted to do a post that was simple yet positive.

In addition next week is my first face to face appointment at the hospital since the pandemic and I need this week to be as relaxing as possible. These things combined have inspired my topic for this week: Positive Affirmations.

Positive Affirmations are statements that have meaning. People use them for a number of different reasons including to motivate, to encourage, to inspire, to be happy, to heal and to change the way they think and feel. Positive affirmations are also believed to rewire the brain as they work to challenge any negative thought processes we may be harbouring.

Traditionally affirmations are said repeatedly aloud or inside your head. They are often short, used in the present tense, include the word ‘I’ and are of course of a positive nature! Examples include:

I am happy
I am confident
I am strong

Needless to say you don’t need to stick with tradition, you can say them to yourself whilst looking in the mirror, you could write them down, you can use them in longer sentences – in any way that makes them meaningful to you. The only suggestion I would make is you keep them positive and that you make them in the present tense because after all it is about feeling good in the moment – not in a months time. Examples could include:

Today is going to be a great day
I stand up for what I believe in
I can become anything I put my mind to

In line with the fact I have hospital next week I thought I would share some of my own positive affirmations to prepare me for what is to come.

I am calm
I am worthy of good health
I am important and therefore will be listened to
I love my body

In addition to affirmations I am going to spend the week finding little pockets of happiness to pick me up from the week I have just had, and to keep my mind productive knowing what’s to come. It sounds strange, but sometimes I think how do you make yourself happy? What constitutes as happiness? Here are some ideas:

Write a gratitude list – For more on gratitude lists read my previous blog post here

Better sleep

Get outside – Even if this is just sitting at your door or window.

Smile

Laugh – It’s difficult to just roll around laughing, but even watching some funny videos or programmes can help to realise some feel good hormones.

Treat yourself

Practise kindness – Do something nice for someone else if you struggle being nice to yourself.

Embrace the small things

Exercise – Highly debatable with certain chronic illnesses!

Keep learning

Do something you love – This doesn’t have to be major, something as small as having a cup of tea or a bath is more than enough.

Here we have it my list of happiness inducing ideas and positive affirmations. If you have any affirmations you would like to share I would love to hear them.

Sarah xx

Activities · Art · Chronic Illness · Hobbies · Mental Health · Tattoos

My Favourite Tattoo Ideas to Represent Chronic Illness

25th Jun 2021 memyselfandchronicillness5 Comments

We are in that week of the month where we focus on a chronic illness theme and I have decided that this month I am going to focus on a hobby: Tattoos. Technically tattoos may not be considered a hobby, but designing them and researching them very much can be.

Disclaimer – You should always check with your doctor before getting a tattoo to ensure it is appropriate for you and your conditions – remember everyone is different, so you shouldn’t assume because someone with your condition has had one and was fine, that you will be the same.

It’s important to note at this stage, that not all people are able to get tattoos, or want them even, and in some cases certain conditions may not tolerate tattoos full stop. If you are one of these people don’t be disheartened, tattoos can still give you inspiration in terms of pictures to create, or cute symbols to wear in the form of jewellery and clothing, and even crafting ideas.

If you are someone who can have a tattoo remember to always do your research first, check with your doctor to see if you are able to get one, think about size in order to minimalize pain etc. (tiny tattoos are very in style these days and are great if you want them covered up easily), and always make sure you visit an artist with an excellent reputation and with all the relevant hygiene procedures in place. This is extremely important as tattoos can cause infections if not performed in hygienic environments with professional tattooists.

I personally have two tattoos – the first before I became ill and the second a few years into my illnesses. Both represent things important to me with the second being representative of my chronic illness life. You wouldn’t know it to look at it, but I know it which makes it that much more special. Several years down the line and a few more chronic condition onto the list, I would one day like to get another one to represent where I am with it all now, (although I would need to check first if it is advisable with my newer conditions), and so the list of my favourite chronic illness symbols was formed…

1. The Sun – The sun is something that always puts a smile on people’s faces. It also represents coming out of the dark into the light, and seeing the light at the end of the tunnel.

2. A Wave – This sounded a bit strange to me at first, but a wave is a symbol of the ocean which automatically represents a level of tranquillity for me and happier memories. The ocean also conjures images of movement and therefore life moving on no matter what.

3. An Anchor – Sticking with the water theme, anchor tattoos can be extremely dainty and cute, yet have a powerful message behind them. They can symbolise stability and strength, a great reminder of those things that keep us anchored in our lives.

4. Quotes – As a lover of the written word, I can often find words bring more meaning to me than pictures, and I am a big fan of a cliché positive statement or quote. Quotes can be generic chronic illness phrases that represent hope or strength, or they can be something completely personal to you from within your own family – it doesn’t matter as long as it is relevant to you and your journey.

Photo by Lucas Guimaru00e3es on Pexels.com

5. A Compass – A compass spoke to my mental health struggles as it symbolises going in the right direction and something to aid me in never feeling lost. It also represents travel and journeys which let’s face it with chronic illness and/or mental health is definitely an eventful one.

6. Awareness Related – For those of us who want to wear our conditions with pride specific awareness tattoos are a must. These can be used in a variety of formats from the spelling of your condition, to awareness ribbons in the colour of your specific illness, to condition related symbols e.g. butterflies/zebras

7. Butterflies/Wings – So speaking of butterflies.. I actually think butterflies in general are a lovely idea regardless of whether they represent your specific chronic illness or not. Butterflies can represent freedom and transformation, whereas wings can indicate a need to release yourself from whatever holds you back and be free.

8. An Arrow – For me an arrow represents moving forward, and can be a great tattoo to have independently or as part of another design. Chronic illness may be a regular companion in our lives, but it is so important to look to the future regardless and have hope for what is to come.

9. A Lion – There are so many animal tattoos you can get to acknowledge strength, but for me nothing says it more than a lion. Not only does it indicate strength but courage too. Courage to keep going day after day regardless of what we face.

10. An Ampersand – The ampersand is the ‘and’ symbol on your keyboard. To begin with this may seem strange, but to me the meaning is so fitting. When we use an ampersand in writing we are saying ‘it isn’t the end’ and that ‘there is more’ – chronic illness is not the end and there is a hell of a lot more to me than illnesses and it is about time people realised that!

Here we have it my top tattoo (or creative pictures/symbol for clothing/jewellery/crafting) ideas. Which would you pick to represent your life with chronic illness? What designs do you have?

Sarah xx

Activities · Chronic Illness · Letter · Mental Health · Personal

A Letter to My Chronic Illnesses

21st May 2021 memyselfandchronicillness5 Comments

Dear Multiple Chronic Illnesses,

It is strange to think we have known each other for the last eight years, maybe more, and yet it is only now I have decided to speak directly to you and not just about you. To be honest, I think it has been the recent awareness days/weeks that has made me feel I need to speak to you one on one. Let me make this clear there may be five of you, but for the most part I am going to address you as one, seeing as you all make me feel the same way.

For a long time, you have been a stranger to me – somebody I have kept at arms length whilst trying to find reasons to why the both of us cannot and should not co-exist. I am not surprised I felt this way, you did decide to enter my life in the period that should have been the best days of my life, hitching a lift on a body that didn’t belong to you. Nevertheless you did and you have hung on ever since, digging your heels in as I tried and I tried to shake you off.

How does it feel knowing you have robbed me of precious time? Knowing that because of you and your power over me, my ability to live a ‘normal’ life is long gone. Knowing that with you by my side, the future terrifies me.

The thing that gets me about you the most is, the fact you want to be so noticeable to me, yet invisible to everyone else. It’s almost like your a performer in a pantomime – you know when the audience screams ‘their behind you’ and the person on stage turns round and they’ve disappeared – only this is in reverse. I’m in an audience of one whilst everyone else is on the stage struggling to see what I do.

You know how cruel that is to do that, right? To not only make me suffer physically, but to make others question my sanity too. To be laughing at me, as eventually I started to question it myself. I’m curious do you ever think of the mental health impact you have had on an already anxious mind? Did it ever bother you watching me get gaslighted time and time again by many a health professional and even people who knew me?

When all is said and done, there is really only one question I would like to ask you – why me? What was it about me and my life that made you want to tear it up so badly? Was it my accident, my struggles in life, my mental health, or was it random? And why was one illness not enough, why did it go to two and three, then four and five, why did you need me to keep gathering illnesses like some people gather junk? I guess my initial ‘I have one question’ was a bit off – maybe I have several – but that’s what carrying you around does to me, it constantly changes my direction.

Over the course of the last eight years my life has changed it’s path on so many occasions. You have single-handedly stopped my working life, my relationships, my social life and my future plans. I should hate you, and trust me at times I really really do, but you’re apart of me, so if I hate you am I not hating myself too? Hating you won’t change anything though because I now know you are here with me for the long run, and for us to get through it we have to work together.

I know this is still a work in progress at times, but I don’t know about you I feel we have been working more in sync lately. Like with any relationship though it’s give and take, and you definitely need to work more to match me in the giving department. I know, I know, it’s all about you, like literally all day everyday, but you have to give me some air time too. I get it you thrive off attention and you find nothing more enjoyable than rearing your head when I least expect it .

But, guess what? It is me who is going to have the last laugh. That’s right, me! Because I am no longer trying to run from you, no longer hiding from you and no longer trying to find a way to push you off the moving train, because I accept you. And because I accept you, you have no power not really.

You see you are the weak one, not me. That’s ok though, I am strong enough for all six of us.

Sarah xx

Activities · Chronic Illness · Hobbies · Poetry

A Poem To Those Who Knew Me Before

26th Mar 20219th Apr 2021 memyselfandchronicillness5 Comments

I have come slightly late to the party, but the 21st of March was World Poetry Day.

Poetry can be a great tool for many people to express themselves, and as a lover of the written word I can see why. Not only that, poetry can help you release your creativity, send powerful messages that you may otherwise find difficult to say, and allow you to enter a zone of mindfulness where you focus your attention on one thing. All of which are great aids for people with chronic illness.

So, with this in mind I thought I would try my hand at a spot of poetry myself to celebrate (a rather belated) World Poetry Day.

I am going to put it out there straight away – I am no poet and I admire anyone who makes this seem easy because it really wasn’t. Even so I hope you enjoy xx

My poem is: To Those Who Knew Me Before.

You say I am not ill

Although I know I am

You say it’s in my head

Like it’s all one big scam

You are free, You can live

You don’t have to worry

I am forever changed

With this beast inside my body

Things have changed between us

no-one is to blame

We are on different paths

Nothing stays the same

You don’t get to judge me

Because you do not understand

This is chronic illness

This was never in my plan

Life is for me now

At a slower pace

With some days only managing

To just about wash my face

I am me, but I am not

A contradiction it may seem

I wish I could explain it

I wish it was a dream

I hope one day it changes

I hope one day I’m free

But even if it does

The scars of chronic illness will forever impact me