Chronic Illness · Invisible Illness · Sleep

Why Sleep is So Important – My Reason Outside the Science

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

Awareness · Chronic Illness · Loneliness · Mental Health · Social Media

I’m Here Too – Chronic Illness and Loneliness

This week is mental health awareness week (9th -15th May), with this year’s theme focusing on loneliness, and it got me thinking.

Loneliness affects so many people of all ages and backgrounds, and since the start of the pandemic it is no doubt a really prevalent issue in a lot of people’s lives. But what about the loneliness felt by chronically ill/disabled people? For us this goes way back before Covid and is not just built on a physical entity.

Before I go any further and talk about my own experiences, I want to point out there is a big difference between feeling lonely and being alone. Being alone is celebrated by a lot of people (myself included) especially of the introvert type and is a tool used to refuel and recharge – there is nothing wrong with this whatsoever if it makes you happy. Being lonely however is, because this is what affects your mental health often bringing up feelings of isolation and seclusion, and it is this that I am focusing on today.

When I think back to my own experiences of isolation in relation to my chronic illnesses it tends to fall into three categories:

  • Physical i.e.. not seeing people due to being unwell
  • Mental i.e. people not understanding how I feel in regards to symptoms
  • Lifestyle i.e. being different to those around me – work, relationships

If we have said it once we have said it a million times lockdown was a time for ‘healthy’ people to see what it is like from our side of the coin. The results – people struggled with their mental health and needed to get back to ‘normality’ asap. Yet here we are two years later with people still refusing to see lockdown is what the majority of chronically ill disabled people live every single day. With next to no support may I add. Limited to no socialising and little to no opportunities and/or ability to work in the traditional sense. The majority of the days are spent housebound and in some cases bedbound, only being able to see the people we live with if indeed we live with anyone at all. This is the physical loneliness of chronic illness – but what about the mental?

One of the hardest things about living with any form of illness is knowing that most people in your life just don’t get it. They try to be nice, but most of the time it can come across patronising. ‘Can’t you just push on?’ or maybe ‘if you tried a bit harder’ or my personal favourite ‘your ill again? What’s wrong with you now?’ – Oh you know just exactly the same thing that has been wrong for the last eight years!!

Photo by Jeswin Thomas on Pexels.com

It is hard knowing that people don’t get how you feel or understand the daily agony you face. It can make you feel different to those around you and therefore separate from the pack. Ever heard that saying, ‘feeling alone in a crowded room’ – or something along those lines – this is it feels like to be lonely with an illness/condition. You have all these people around you – family, friends, medical professionals and yet the only person living like you is you.

Because whilst people may sympathise with my symptoms, they are not the ones living with the limitations, I am. I am the one who has to see my family members and friends enjoy life and get houses, get married, have amazing careers and babies – all whilst I stay in the same spot. Not one person in my real life can relate and that is a very alienating feeling indeed. Quite frankly I feel left behind. Like I am living under some Harry Potter style invisibility cloak screaming ‘I’m Here Too’ only problem being people cannot only not see me, they cannot hear me either as I am on mute. This is no-one else’s fault of course these are the cards I have been dealt, but I often feel in the shadows whilst those around me are bathing in the sunshine.

Feeling alone in your thoughts can be an extremely dark place. It can cause havoc with your mental health and lead to feelings of anxiety, low mood and/or depression.

(Important Note – if you are struggling with mental health please contact your doctor or one of the amazing mental health charities available).

So, how can we combat these feelings?

One of the best ways of combating these feelings is to reach out to people who are in the same boat and do understand the rollercoaster you are on. This can be through social media, joining groups, reading blogs or contacting charities.

Whilst this may not be able to take away physical remoteness (unless of course you can go to in-person support groups or join zoom groups etc.) this will definitely help with the mental/emotional isolation.

Of course, not everyone thrives on social media and in fact it can make some people feel lonelier especially when you go under the radar and interactions are limited. I often have days like this – convincing myself there must be something wrong with my computer! Nevertheless, even without direct interaction I find reading other peoples thoughts and comments can still help as it makes me feel connected to others in some capacity who have similar experiences.

I guess the point I am trying to make today is you are not alone. I feel it too, as I am sure so many others do, and it is so important to recognise this.

Loneliness in chronic illness is a very real issue – and it is an important topic to talk about not only this mental health awareness week, but beyond.

Do you struggle with the things discussed in this blog post? What helps you?

Sarah xx

Celebrations · Chronic Illness · Personal · Top Posts

Me, Myself and Chronic Illness Blog’s Second Birthday!!!

It’s celebration time everyone because this week Me, Myself and Chronic Illness Blog turns two! Wow, how has another year gone by since I started blogging? Today, I thought I would follow on from my post on my blog’s first birthday (which you can find here), and share my favourite blog posts of the year as well as the most popular. Alongside, my thoughts and feelings about my corner of the internet.

Finding a balance

This second year of blogging I definitely feel I have found my stride a lot more, I have a better routine and a more manageable schedule for posting new content. If you read my first birthday post you will see in the first year I posted a lot – sometimes twice a week – moving to once a week and ending up with three times a month, so I could have a week off. This year I had a quiet word with myself and reminded myself I am ill and therefore took a small step back, now posting every other week (so twice a month).

Finding this balance has benefited me no end because I get to still produce content regularly, but realistically whilst enabling me to focus on my health and other projects at the same time.

In addition, I have improved on my social media skills (ever so slightly), but seeing as this blog is all about honesty let me tell you something this will probably be something that is only ever so-so – I truly struggle with finding the energy! The point is I have improved, so let’s take it as a win.

My Posts

In summary I have written 29 posts in the last year – which of course is a lot less than last year, but understandable with my new schedule. I have tried to cover many topics and below are a mixture of the most popular and my personal favourites to write.

Photo by Ylanite Koppens on Pexels.com

My most popular posts (based on likes)

My favourite posts

The Future of Me, Myself and Chronic Illness Blog

One thing I said to myself when I started this blog was I would only do it for as long as I got enjoyment from it, and I am happy to say we are still on that enjoyment train.

Looking back on what I wrote this time last year, I had stated I was looking to see if it was viable to take it more seriously financially and move to paid options. At the time I felt it wasn’t and a year later I am still very much of that same opinion for now. Partly, I don’t really know what constitutes as viable and also like for many a chronic illness sufferer money is tight.

I also said I would start a Pinterest account – I did – and then didn’t really enjoy it so kind of stopped posting – did I mention I struggled with social media? Therefore at the moment I am mostly rocking Twitter and Facebook – feel free to come say hi if you are on either. I was thinking of maybe an Instagram account to share books I am reading or activities I enjoy, what are peoples opinions on that platform in particular?

Before I go…

I wanted to thank everyone and anyone who has supported me and/or my blog this last year and beyond, your support means everything it really does. The world of chronic illness is a really lonely place at times and knowing there are people out there helps. I hope this blog can be a place to feel less lonely and that hearing my thoughts on chronic illness life can make you feel less alone in your own.

Thank you so much again,

Lots of ❤

Sarah xx

Activities · Chronic Illness · Films · TV

Film and TV Titles That Reflect Chronic Illness

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

Anxiety · Chronic Illness · Gifts · Personal · Review · Tourette Syndrome · Weighted Blanket

Weighted Blanket – My Personal Thoughts and Review

Hi Everyone, today I thought I would do something a little bit different on the blog – a personal review. This was inspired by comments I received on my chronic illness gift haul post back in January, (which you can read here), with people asking how I found my newly acquired weighted blanket. It has taken me some time to get round to trying it, but here is my verdict…

Disclaimer – Before I go any further I would like to point out this isn’t a sponsored post this is purely a review based on my own experiences inline with my individual conditions. Please remember we are all different in our conditions and/or symptoms, and therefore what works for one person may not work for another. I am not a medical professional, I am a patient, therefore always check with your doctor about trying anything new and always read the instructions with any new product.

So, first things first, why did I want to try a weighted blanket? I predominately wanted to try a weighted blanket to see if it helped with certain symptoms in relation to certain conditions – fundamentally my physical health in regards to sleep, my mental health for calming my mind and finally my Tourette Syndrome as a way of aiding in relaxation.

The info on my specific product includes the following:

  • 5kg – however it does state your ideal weight to choose should be 10% of your body weight.
  • It can help with relaxation and calm as it gives a comforting hug
  • Better sleep
  • May reduce anxiety

My blanket came in a lovely packaged zip up bag, which is really handy for storage or a possible travel bag in the future. The blanket itself is really soft and is reverse so you can use it both sides. There are some really great instructions in the pack, so I would really recommend anyone trying this for the first time to read them as they contain a lot of safety guidelines I didn’t even realise were a thing. Such as not covering your face or neck, and that it should not be used if you have any respiratory or circulatory disorders. (Something I didn’t read until after trying it – so don’t make the same mistake as me!!). The biggest emphasis is making sure you choose a weight that is inline with your individual body weight (10% of body weight) and that if you are unsure you should always opt for a lighter weight.

With this in mind, I can say I probably do have the right weight for my body, however not necessarily the right weight for my conditions. I say this because unfortunately getting it out the packaging was my first problem. As silly as this sounds, even with the clue in the title (you know a small word like weighted), I wasn’t actually prepared for how heavy it would be. My Fibromyalgia and UCTD means I have extremely weak muscles in my arms and I actually struggled lifting it out the bag let alone putting it on my bed. Even more of a problem is once it is on the bed I don’t have the strength to manoeuvre it around to get comfortable.

Photo by Vie Studio on Pexels.com

Interestingly, I actually found I had very different experiences depending on where I used it as well. It was a lot easier to use it whilst on my bed then say the sofa. On my bed it felt more evenly balanced somehow even though it is designed to not be bulky. But, I honestly think that is more to do with me than the product and the fact that living with pain makes things feel heavier for me anyway. I tried using it over my body whilst lying on my bed, and also over my duvet whilst under it. Using it over my duvet was a big mistake – it felt too constrictive, which is probably inline with having the wrong weight. I was also more aware of my pain. However, lying on my duvet with the blanket on top of me felt a lot better and helped in making me more relaxed.

My experience of using it on the sofa really was not for me at all. In fact it made me feel rather trapped and as a result increased my urge to tic. Which in turn had the opposite effect in reducing my stress.

In terms of the symptoms I wanted to tackle, I felt the following:

  • Physical Health – Sleep was not changed purely because it is not something I could sleep under. I couldn’t use it over my duvet, and I couldn’t use it solely to sleep under because it isn’t warm enough. At times I felt my pain was more noticeable too.
  • Mental Health – I would say I had better results with my mental health than my physical as as long as I used it on the bed, I found it to aid with calming my mind and relaxation, although I didn’t really experience the ‘hug’ effect so to speak.
  • Tourette Syndrome – Interestingly for me, this was very much environment dependent. In bed, I was able to relax more, yet on the sofa it triggered my Tourette’s pretty badly increasing my urge to tic.

In summary

I would say the weighted blanket definitely has its pros and cons. I like it, but I don’t love it and I probably wouldn’t be in a rush to use it on a regular basis, but that doesn’t mean I wouldn’t use it again. For instance I may find it more useful to use in the warmer months where I can use it to sleep under directly without feeling cold. Whether I would recommend is quite a tricky question because it is very dependent on what you want it for and what your condition is.

As someone with Tourette’s it is quite difficult to recommend to say other pain disorder sufferers as my Tourette’s does play a big role in not only my ability to relax, but my pain levels too. Therefore feeling restrained and having increased urges to tic, increases my body pain in general making it hard to determine if it is the blanket causing me pain or my tensed Tourette body. Having said this, I have read many personal accounts which found weighted blankets helped people with Tourette’s and their tics.

Taking my Tourette’s off the table for a moment, I would say if you are suffering with pain in the form of chronic illness then definitely consider the weight of the blanket, and go for a lighter weight to be on the safe side.

From a mental health viewpoint I would say it is a worthwhile experiment if you can afford it, (they can definitely be on the pricey side), as it can help in relaxation and giving you a level of comfort.

My final bit of advice is really do make sure you do your research and read any relevant instructions. The reality is they are not designed for everyone, so always ask questions before making any clear cut decisions, and find out whether they are suitable for your condition before making a dent in your wallet.

Do you use a weighted blanket? Does it work for you?

Sarah xx

Blog Update · Catch Up · Chronic Illness · Hospital · Mental Health · Personal

Catch Up with Me, Myself and Chronic Illness

Hey Everyone – this week’s blog post is a little different to the norm, in the sense that rather than talk about one topic, I am going to have a catch up with you about lots of bits and pieces going on with me as well as the blog.

Physical Health

So, seeing as this is a blog about my chronic illnesses it only seems right to start with how things have been with my physical health. This is quite simple – the last month has been tough. Hence, perhaps the style of blog post I am writing today. I guess this is the nature of chronic illness yes, but having multiple chronic illnesses in particular. One thing subsides and another thing starts.

You can read my post on the challenges of living with multiple chronic illnesses – my top 5 dilemmas here.

As well as dealing with multiple symptom issues, I have also had a consultant appointment which had been delayed for two years. This revealed that the last letter sent to my GP (two years ago) had contained advice on putting me on a certain medication which never happened. I am still waiting on the medication even now.

I also had to have scan (for a separate issue) and am now awaiting results. Although the scan itself took less than an hour, it wiped out the whole of last week.

Exhaustion is a massive factor at the moment, making every little thing a struggle including being online. I browse things online and try to jump on here and there, but nothing major. I am trying to take each day as it comes – and hey I am here now so swings and roundabouts.

On the plus of not getting online much, I have managed to watch some great telly, and I have a lovely stack of books ready for when exhaustion wants to do one.

Photo by Mikhail Nilov on Pexels.com

Mental Health

Maybe non-surprising to myself, suffering physically has impacted me mentally. There are so many things I had planned to do creatively and that just isn’t happening when feeling so crap.

This then only makes other things happening in my life outside of chronic illness seem so much more difficult to deal with. The rejections sting a bit more, the advice brings me down when normally I would shrug it off. I think that may be my number one bug bare at the moment – places/businesses/charities etc. who claim to help people like me, actually doing the absolute opposite. Maybe, I will go into detail about this more sometime, but not right now instead I give myself permission to feel hard done by, and permission to fume.

Today has been a better day though, today I managed to get outside for the shortest of walks in the sun and today I had a better day symptom wise. Today I am filled with hope again and motivation, which is why I am here making this post.

My blog

In terms of Me, Myself and Chronic Illness blog I feel my fortnightly posting routine is working well for me. It feels enough to keep sharing my thoughts and ideas, yet spaced out enough that I don’t overdo it. If you do want to keep up to date with any new posts make sure to follow me on here or on social media.

It may or may not be obvious, but I have now added a search bar at the side of the post column. You can use this to type in any particular blog post categories you are looking for. I have also added a calendar so you can see what I have written each month.

I have lots of blog post ideas which I hope to share with you over the coming months, a nice mixture of fun based as well as tackling more serious topics, but we will see how things pan out.

In a nutshell

  • I am still enjoying blogging and feel I have better approach to it.
  • I like to describe the basics such as what a search box does (which lets face it was more for my own understanding than anyone else’s).
  • Health wise, I have been bounced around like a pinball machine with appointments here, symptoms there, which has made me feel a bit bleurgh mentally as well as physically.
  • People/places have pissed me off (could I be more vague!?!)
  • Today is a good day, I have eaten a crème egg, had cheese on toast, watched someone win some money on telly, chatted on here – what else do I need?

How has your week/month been? How would you put it in a nutshell?

Sarah xx

Chronic Illness · Facemasks · Invisible Disability · Invisible Illness · Pandemic

Why It Is My Right to Wear a Facemask – and Why It Isn’t Your Right to Question That

Hi Everyone – today’s post is an article I wrote a few months ago when certain restrictions were first eased in the UK. The article was supposed to be used for something else, but never was and it has since been sat doing nothing. With this said, I feel now that we are ‘Living with Covid,’ the issues I wrote about in this piece are still very much a factor for me personally and therefore I wanted to share them on the blog. Please note as this was originally written a few months ago, some of these references may be slightly out timescale wise.

It has been nearly a whole two years since the pandemic hit the UK with most of that time spent not being ‘normal’ – what ever normal means these days. The pandemic has had a major impact the world over for various reasons including on a personal, financial, social, business and most importantly health level. Yet, here in the UK we have seen restrictions lift as we came out of lockdown and in more recent times have been told to learn to live with Covid. Gone is the need to social distance or wear a facemask in certain situations, in fact it was advised to be a personal choice.

A personal choice which has thrilled many people who believe they have suffered enough and cannot endure anymore. A decision that regardless of your own beliefs has had to accepted as freedom of rights, individual choices and personal judgements. But what about the rights, choices, and judgements of the people who still choose to wear a mask and/or social distance, what and where are their rights?

I live with multiple chronic illnesses, one of which involves my immune system. I have been self-isolating since the pandemic started. The only time I have left my home is to go on short walks on the same route every few days (or when symptoms allow), and for medical appointments. I was lucky enough to be vaccinated, but the personal choice for my household and I is to wear a facemask to protect ourselves and others who may be vulnerable around us.

Going on the rationale of the rights to be unmasked, surely to wear a mask and social distance is our personal choice, our freedom of rights and our decision based on our experiences and individual beliefs – so why do people take such umbrage with that?

Photo by RODNAE Productions on Pexels.com

In the last few weeks members of my household have been challenged about wearing a facemask on no less than six occasions. These interactions have happened in various ways from subtle quips such as laughter and eye rolling to more hate driven encounters where people have been confrontational and aggressive. Let that sink in for a moment – challenged for wearing a mask. Questioned about why you want to protect yourself and others around you, like you should be ashamed to. Questioned by strangers who don’t know you from Adam, yet feel like they can pass judgement on your choice, all whilst you cannot dare to question theirs.

Those people still choosing to wear a mask have absolutely no effect on your day whatsoever. It doesn’t stop you doing anything or interfere with your plans or your so-called rights, so why does it affect you so badly? To a point where you want to be rude, dismissive, mocking and hostile – why does it get under your skin? Maybe because we are portraying that freedom of the public is actually only about the freedom of the unmasked, and when someone doesn’t hold the same mentality then it becomes a problem.

When you look at a person in a mask you have absolutely no idea what their reasoning is behind their choice, or what type of life they are living. To look at me I look like any other person you would encounter in the street, quite simply I don’t look ill. You cannot see the endless symptoms I am subjected to, or the internal battle my body is fighting. You don’t know why protection is so important to my health. In the same way you don’t know of the mental health struggle a person may be harbouring from having a pandemic rip through their life and therefore finds wearing a mask is the comfort blanket they so desperately need. A person whose job is to look after after the vulnerable and therefore who needs to be considering this when out and about. A vulnerable person who has no support or appropriate guidance from the government, and who are immunocompromised unable to create antibodies against a deadly virus. Nobody knows anybody else’s story, and nobody has the right to ask. Nobody is obligated to explain themselves; nobody should have to.

Quite simply if I have to accept your right to be ‘free,’ then quite frankly you have to accept my right to stay well and to protect my immunocompromised/chronically ill/disabled communities. That’s the problem with a pandemic you see it requires you to look beyond yourself. It means being able to value strangers, to be kind, to show support in situations that may not affect you directly, and to be respectful of all. The problem being some people are only capable of these things when it affects them directly, they show solidarity and bang on their pans until it is no longer their concern. Then it bores them, you bore them, so you find yourself standing alone.

The vulnerable communities and their families have to endure so much over these last few years, to be subjected to this antagonistic behaviour when people have ultimately got what they wanted shouldn’t be another thing to contend with. Freedom isn’t about a select few, it is about everyone. Anyone can become vulnerable at any point in their lives – so how would you feel if that was you, or someone you loved, and the response you received was to stay out of society or be ridiculed for the one thing that enables you to go outside.

I am not asking people to wear a mask because clearly, we are beyond that now; I am simply asking you to respect the people who do.

Sarah xx

Chronic Illness · Mental Health · Symptoms

Mental Health and Chronic Illness – Part 2 – Yourself, Uncertainties and Managing Symptoms

TW – This post talks about mental health struggles surrounding chronic illness, which includes feelings of self-hate. Please click off this post if this is something not suitable for you at this time and check out one of my many other posts.

Here we are on part 2 of my mental health and chronic illness post. In the first post we covered the mental health issue surrounding other people which you can read here, so let us move on to the next point…

Mental health and chronic illness with regards to yourself

The next hurdle in the mental health battle of chronic illness is the opinion chronically ill people hold of themselves. When I first became ill, I hated myself. I hated myself for allowing my body to let me down, for being so weak and not being able to get on with things like everyone else around me could. All I could see was how much my life had changed, and how much I didn’t want it to. So, I pressed on and struggled, falling multiple times mentally in the process because I didn’t want this chronic illness life to my truth.

The thing is what people don’t understand with chronic illness is the notion that you are grieving. You are grieving for a life that can no longer be lived in the way you had hoped, you are essentially saying goodbye to a part of you that you can never get back – not if you want to stay as well as you possibly can anyway.

Grieving as a result of chronic illness varies from person to person, with some people never experiencing this process, but for me personally it was a process that took several years. Most of this time was spent in the denial, anger and bargaining stages – wow didn’t I spend a long time in denial! I couldn’t and wouldn’t accept this was going to be my life going forward. Instead I adopted the mentality that if I could push for answers and force myself to continue as normal (like a lot of health professionals suggest), I could push through the worst and find this miracle cure we are all seeking. This wasn’t the case and as a result I actually made myself worse.

Nevertheless, slowly but surely I found my way to acceptance and when I did the mental health relief I felt was immense. There was light at the end of the tunnel, even if indeed no cure. With acceptance I stopped the hate I felt about myself and recognised just how strong I was to be living with multiple chronic illnesses every day. With the subsidence of hate came the lifting of the blame. It wasn’t my fault the hand I had been dealt, but it was ok to feel sad, to have days where I cried and struggled, it didn’t make me weak – it just made me human.

Of course acceptance has it draws back, as with anything in life because with acceptance comes the fear you are giving up. To accept I am ill felt like I was saying I admit there is no miracle waiting for me, and for some this indicates that the fight is over, the flag has been waved. Even in my most recent times of acceptance I have felt this way, if I am not fighting for my health then what I am I fighting for? Chronic Illness has stolen so much from my life, my ability to work, have a family, a relationship, to socialise, to accept this does it mean I am waving goodbye to ever having those things?

I think not, instead I think I accept these things won’t be easy and that they will probably look very different to those around me with those things. I can still fight for my health, but through awareness and advocacy and trying to help others in the same boat.

Photo by Vie Studio on Pexels.com

Mental health and chronic illness with regards to uncertainties and missing out

The mental health impact of not being able to work, have an independent life, and live like anyone else my age is a very real worry, and although I have accepted I am ill it doesn’t actually stop the anxiety of missing out on life.

In life we are conditioned rightly or wrongly to believe our road to happiness is on one particular path. School, education, good job, partner, marriage, home, children – in some kind of order is something the majority of people aim for. Chronic illness makes all of these things difficult. Endless symptoms stop you from working (or at least working full time), this impacts your finances and therefore your ability to move out of your family home. It can also impact your ability to socialise and therefore meet new people putting the brakes on potential relationships and marriage and children. Of course, this is not the case for everyone and there is no clear cut way of living life – not everyone needs to be in a relationship to be a parent for example – but chronic illness is a hinderance to almost all scenarios rather than a help. Being chronically ill doesn’t magic away those natural desires for experiences in life, so how do you combat the anxiety of not having those things?

The truth is the anxiety doesn’t just disappear, it is about viewing it in a slightly different way. It is about making changes to those areas of life and experiencing them differently to how I had planned in order to compensate my physical illnesses, but to feel I am still achieving.

Mental health and chronic illness with regards to managing symptoms

The final hurdle I am going to tackle is the mental health effect of dealing with physical symptoms on a daily basis. Feeling ill most days if not all is draining. It takes it out of you each and every day and it can be hard to keep getting back up from another hit physically.

On top of this the majority of advice you are given is predominantly self-management of all physical symptoms in the form of pacing and diet to name a few, but how do you self-manage the mental health implications?

Nobody tells you the effect physical symptoms can bring psychologically, and how the relentlessness can be a tiring cycle of sleep, eat, be ill, repeat. We are left to our own devices, our own interpretations of what coping is. Nobody can predict how they will react, but I can assure you telling people to look on the bright side, or that things could be worse is probably not the answer.

In conclusion

With all these mental health challenges said and done, I can say on a personal level chronic illness has shown me I have a strength I never knew possible, but this didn’t happen overnight. It has made me more resilient, more understanding to the needs of others and has shaped me as a person. On my good days it makes me appreciate the smaller things in life because they matter so much more now. On my bad, maybe not so much, but I always try to think of tomorrow as a chance to try again.

I will probably always struggle with mental health in relation to chronic illness, but that’s ok – it’s hard not to. My hope is simply that the conversation is ignited more, and that there is an understanding of the mental struggles as well as the physical. That people know they are not alone in how they are feeling at times.

I hope this post wasn’t too long for anyone – and a massive thank you if you made it to the end. As always feel free to leave a comment, and if you fancy you can follow me to keep up to date with any new posts.

Sarah xx

Chronic Illness · Gaslighting · Invisible Illness · Mental Health

Mental Health and Chronic Illness – Part 1 – Other People

TW – Please be aware this blog post talks about mental health issues surrounding chronic illness including medical gaslighting and negative opinion from others. If this is something that may be difficult for you at this time, please click off and check out some of my other posts instead.

Today I thought I would talk about a topic very close to my heart: Mental health in relation to chronic illness. Personally, I have found one of the hardest parts of living with chronic illness aside from the symptoms they create, is the mental health implications of persistent, never-ending illness.

When I thought about the various mental health challenges associated with chronic illness I realised there were quite a few. The best I can categorise them is as follows:

  • Other people
  • Yourself
  • The uncertainties/missing out
  • Managing symptoms

I am going to go into each category in more detail over 2-3 blog posts. A – because if you are anything like me reading long posts can be difficult, and B – I want to give myself a little break in-between. With this in mind, let me start with the first category…

Mental Health and Chronic Illness with regards to other people

One of the biggest challenges with mental health and chronic illness is the opinion of others. Many people may say why does this matter? You know your own self to know if you are ill or not, but the reality is it does matter. It matters because being believed is one of the biggest stumbling blocks when it comes to invisible illness. Most chronic illnesses don’t project an image of a sick person; in fact most chronically ill people look completely healthy, like any other person you may encounter on a day to day basis. Unfortunately there is no big neon light above our heads saying ‘Chronic Illness Person Here’ to make it easier for others to identify. It is hard for someone who doesn’t experience illness to get to grips with this concept at times, but also understandable, I mean can you completely resonate with something you have never experienced yourself? Whilst this is annoying, the kick to the gut is no doubt the dismissive behaviour of medical professionals and those who are trained to know better.

Medical gaslighting of chronic illnesses has probably been a thing for who knows how many years, that notion of a stiff upper lip and getting on with it runs rife especially in places like here in the UK. The problem being chronic illness is not something that is going to just disappear and go away, and actually the more you ignore it the worse it can get. The mental health destruction of having a qualified medical professional tell you over and over again that there is nothing wrong with you, is something I can truly say never leaves you. The fact this person or persons who have all these qualifications in medical science is telling you essentially what you believe is all in your head can only lead to one conclusion – it is all in your head. You illnesses and symptoms are something you are manifesting yourself and you are so mentally ill you are able to convince yourself you are having physical symptoms was a notion which led me to question my own state of mind. They were the professionals not me, and when you have someone tell you on a loop you are wrong you only have one option but to believe it, and as a result I couldn’t trust my own actions anymore. Even after it was discovered I was ill, no apology was ever made to me because it didn’t matter to them – I didn’t matter to them.

The problem with not having a medical professional backing your concerns not only impacts your thoughts on your own mental health, but the thoughts of those around you too. The people who love you start to doubt your stability because a medical person must know your body more than you do, and therefore they also start treating you like a mental health problem. The difficult part being even after you are diagnosed the stigma of those dismissed years of illness stay in people’s minds no matter how hard they try to convince you otherwise. The eye rolls, the exchanged glances, the declarations of ‘what’s wrong now’ for a long time filled me with shame. Like I was a thorn in so many people’s sides.

Photo by Vie Studio on Pexels.com

If this wasn’t enough you have the people in the street who you vaguely know, stop you and ask why you are not working, or why you aren’t more social. Who make their little remarks as they look you up and down, judging. You paint a smile on your face because you don’t know how to react whilst all the while dealing with the little voices in your head telling you they don’t believe you. It shouldn’t matter, but it does because you want people to see the real you and not the version they think you are selling.

One of the saddest things about public opinion on chronic illness is a lot of the time people don’t believe it whether you are diagnosed or not. Or maybe to be blunter they don’t care. There has probably never been a time when this has been reflected more than in the current times with the pandemic. Living somewhere where the lives of the vulnerable has been so disposable has been heart-breaking to say the least, but more than that it has been mentally traumatic knowing there are people who don’t value your life as much as your ‘healthier’ peers. The mental health implications of vulnerable communities has the potential to run on for years as people feel neglected and less valued in society.

So, is there an answer to this particular mental health challenge?

I would say yes, but not one that will happen overnight. It takes kindness and patience with yourself and it takes understanding and education of others. To move forward in society the reality of chronic illness needs to be talked about, and honest conversations need to be had. Chronic illness needs to be normalised and represented more across main stream media to demonstrate how anyone can become ill regardless of age, race, sex and background. Most of all we need to stop treating invisible illnesses like a dirty little secret to be ashamed of, on the contrary we need to make the invisible visible through our communications and words.

Medical professionals need to be trained in understanding the impact their dismissive behaviour can have not only on a patient’s physical, but mental health too. Chronic illnesses diagnoses need to be viewed as important as other diagnoses and support needs to come in the form of helping patients find their new path in life and helping them to combat the emotions they will inevitably face.

Here we have it challenge one – complete! I hope this wasn’t too long a post (I am basing this purely on my own experiences), either way I will tackle the next challenges in my future post. To keep up to date with my upcoming posts make sure you follow me 😊.

As always if you have any comments to share – I would love to hear from you.

Sarah xx

Chronic Illness · Exercise · Food · PCOS · Stress Management · Tips

A Round-up of PCOS Tips

I was a little torn with whether to write this PCOS post today, but as you can see I have decided to persevere. The reason I was torn was because my own PCOS diagnosis over the last few weeks has been sketchy to say the least.

I was diagnosed with PCOS several years ago now (you can read previous post here) and I have struggled on with the many symptoms attached to the condition. Some of my symptoms have ‘altered’ I guess in more recent times, however the majority of them are still riding strong. Nevertheless, my GP is now questioning whether the diagnosis was right after all.

I have been back and forth down this path with doctors’ for the majority of my conditions, so why would my PCOS be any different? It is just frustrating more than anything, I know my symptoms are PCOS, so what does this mean? Is it something different? Is there something additional? Or will it be chalked up as nothing at all, taking me back to square one.

Regardless of the outcome, I wanted to share with you the top tips I have discovered over the years regarding the world of PCOS. These are centred around the chronic illness favourites – Food, Exercise and Stress.

Disclaimer- As always please note I am not a doctor, so you should always check with a health professional before trying any new tips.

Food

Diet is important with regards to PCOS for a number of reasons including regulating insulin levels and PCOS related weight gain. Due to other symptoms linked to other conditions I have always struggled getting a good balance with my diet. Several years ago I was three stone heavier than I am now, and weight loss was a very slow process for me. However, I believe it was this slow process that has enabled me to keep the weight off and more importantly not be a fluke. That is why I work on the opinion moderation is key and that making small changes will inevitably lead to bigger ones in the long-term. Small changes to make could include:

  • Eat enough protein
  • Eat little and often
  • Up fruit and veg portions
  • Choose whole foods as much as possible e.g. brown rice, wholemeal bread
  • Reduce caffeine
  • Find things to distract your cravings
  • Drinking water when you are hungry to see if you are indeed hungry or actually thirsty
Photo by Suzy Hazelwood on Pexels.com

Exercise

This section I have to confess is very much based on things I have read rather than done myself. Not because I am lazy or am dismissive of exercise, but because living with ME vigorous exercise is something I am not able to do at this moment in time. My exercise consists of an extremely short walk every few days nevertheless, if you are able to exercise here are some small tips:

  • Try aerobic exercise e.g. jogging, cycling, dancing, swimming, exercise class, walking (I wonder if walking at the speed of a tortoise counts – just saying!)
  • Try to exercise 30 mins a day
  • Find an exercise you enjoy that way you are less likely to give up
  • Make sure you are properly hydrated
  • Be realistic with what you can do and the goals that you set
  • Take breaks and have rest days – remember it is a marathon not a sprint!

Stress

Let’s face it stress is something that is around us most of the time – especially in this modern day climate. It is also something we should be mindful of regardless of what condition we are battling. However, the often unwanted symptoms of PCOS can raise those stress levels significantly causing us additional problems of anxiety and in some cases depression. Tips in combating stress include:

  • Practising meditation, muscle relaxation, mindfulness techniques
  • Getting a good nights sleep
  • Exercise
  • Mindful eating
  • Alternative therapies such as massage, reflexology, aromatherapy
  • Positive thinking (easier said than done I know, but reading up on such theories may be helpful)
  • Counselling
  • Finding a support group

For other stress management tips read my previous article here on managing stress at home and here for managing modern day stress.

For more PCOS symptom related tips check out my symptom of the week post on unwanted/excessive hair growth here and my symptom of the week post on oily skin/acne here.

I hope these tips are somewhat helpful to anyone dealing with the symptoms of PCOS. I know a lot of them are quite generic and trust me I know how annoying this can be, but unfortunately there is no fix me button anywhere. If there was I would have been first in the queue to press it.

I would love to hear if anyone else has any tips they would like to add, or maybe any part of their PCOS journey they would like to share.

Sarah xx