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

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 · 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 · Mental Health · Personal · Review

Review of the Year 2021

I cannot believe I am saying this already, but this is my final blog post for the year 2021. As I think will now become a tradition on Me, Myself and Chronic Illness Blog, my final post of the year is going to be a review of the last 12 months and what a 12 months it has been.

Life in Lockdown

This last year has been essentially another year in lockdown for myself and I know many other people with chronic illnesses. Firstly, due to Covid and not feeling safe enough in public spaces especially once face masks become non-compulsory (although at time of writing this they are to be worn again in certain situations), and secondly because chronic illness life is filled to the brim of symptoms and flare-ups that keep me restricted in most aspects of life.

Last year I wrote in my 2020 review (find it here) that I hoped people would start to become more mindful when it comes to the lives of the chronically ill/disabled after experiencing lockdown themselves – and I can safety say from my own experiences that hasn’t been the case. People were only bothered when it affected them and now that it doesn’t again they really couldn’t care less about anyone else around them. Of course this isn’t everyone, but unfortunately in my experience there are a higher number than not.

If I really allow myself to think about how chronically ill/disabled/vulnerable people have been treated this last year, it breaks my heart and fills it with fear all at the same time. It makes looking to the future scary, but nevertheless looking to the future we must do. It reminds me of a quote I heard about the sun always shining after a storm – and I believe and hope that there are better times ahead for us all.

My Personal Health

This year my health (as always!) has been very up and down. I have received a few more health updates which I have yet to discuss on my blog, and even as we speak am due to have blood tests this week to confirm something else. I am taking it in my stride though because what else can you do?

Photo by Karolina Grabowska on Pexels.com

I must confess this year has been a bigger struggle with regards to my mental health. I have good days, not so good days and everything in between. The problem is I often forget to take my own advice, but I am working on it and for the most part I think it is turning out well.

Me, Myself and Chronic Illness Blog

2021 has seen 32 new blog posts and although this is less than last year, I feel I have got into a better routine with blogging. In my early days of blogging I felt like I needed to post weekly and got too bogged down with how many people – if any – were enjoying my content.

It was then that it dawned on me that whilst I want people to read my posts, it isn’t the be all and end all if people don’t either. I don’t receive any income from my blog work, so it is important I take control with being realistic on what I can comfortably produce.

Now that I blog fortnightly I am able to give myself a break away the blog to focus on other things, and as a result produce better content that isn’t too repetitive – hopefully!

I am really happy to say the blog now has 112 followers which I am really proud about. This may not be huge in comparison to other blogs, but I am truly grateful to each and every follow as it inspires me to continue and reach out to others in the same boat as me. As cliched as this sounds if my words can resonate with even one person then it is worth all the effort.

So, to anyone old or new to the blog, even if you only stumbled here today – a big, big thank you for taking the time to visit my little corner of the Internet and for reading this post and any others you may have read. I wish you and your loved ones a very happy Christmas and an even better new year.

Lots of love – see you in 2022!

Sarah xx

Chronic Illness · Dilemmas · Fibromyalgia · ME/CFS · Mental Health · PCOS · Symptoms · Tourette Syndrome · UCTD

The Difficulty of Living with Multiple Chronic Illnesses – My Top 5 Dilemmas

It has been a few weeks since my last blog post, but I am back hoping that this week is going to be a better week symptom wise. The last few weeks have been an endless cycle of condition and symptom flare-ups, to a point where I do not know anymore which condition is the cause at any one time.

This has inspired my blog post topic for today – The Difficulty of Living with Multiple Chronic Illnesses. As all of us know living with even one chronic condition is a tough battle, but living with multiple really sends your head into a spin. This is for many reasons from the fact you never get true respite from feeling ill – as once one condition calms down another or others start to flare-up – to having specific symptoms from each condition fight against each other to make you feel that much worse or bring that much more intensity.

This is made much harder when you live with polar opposite conditions. Essentially conditions that require very different self- management techniques to get by. I personally find this so draining and confusing and often find myself in positions of fundamentally having to choose between which symptom is affecting me more in that moment in time, and therefore having to decide which symptom to tackle or ignore.

I thought I would share with you today the top issues I face with opposing conditions and demonstrate just how my multiple chronic illnesses interact with each other.

Dilemma Number 1 – Body Temperature Issues

My first dilemma is how to regulate my body temperature. Living with Raynaud’s I find I am freezing cold the majority of the time, no matter what I wear or what I am doing. My hands and feet generally tend to be like blocks of ice – my circulation is awful. I am cold to the touch and at times this can sink into my bones. Yet, living with PCOS and other menstrual problems I can encounter deep internal hot flushes which can leave me feeling faint and nauseous. My internal body can be boiling whilst my physical body is freezing making simple tasks such as showering or deciding what to wear a nuisance.

Photo by James Wheeler on Pexels.com

Dilemma Number 2 – Managing Fatigue

Fatigue, exhaustion, absolute pain in the ass – what ever you want to call it – has, is, and will always be my number one nightmare symptom. There is nothing worse than feeling so weak you cannot complete simple every day tasks. Every single one of my conditions has fatigue connected to it, yet they require me to deal with it in very different ways. ME, Fibromyalgia, UCTD, and PCOS all require me to pace, rest and slow down. However, Tourette’s makes that near impossible at times. Holding tics in makes my Tourette’s worse so I need to get them out, I need to move, I need to be frantic, I need to throw my hands and legs, I need to walk – all of which is a contradiction to my other conditions and how it is advised I manage my fatigue levels.

Dilemma Number 3 – Pacing

This dilemma is more of a physical vs. mental dilemma. My physical conditions all require me to pace my days to try and prevent flare-ups in my symptoms. To stop me having those crash days several days later where I cannot do anything of any use other than exist. Yet, as someone who has experienced mental health problems I know how important it is to keep my mind active and to live in the moment. And I guess sometimes to feel like anyone else. Pacing sometimes stops me doing this, it makes me have to plan, to analyse, to weigh up whether it is worth it. It makes me have to choose what matters more – physical or mental wellbeing?

Dilemma Number 4 – Exercise

Exercise is a real ‘I don’t have the answer’ scenario. It is no secret that in the world of ME exercise can make you feel worse and in my personal case this is very true. I find it brings on flares of extreme exhaustion and bouts of nausea and dizziness and can wipe me out for huge amounts of time. However, living with Fibromyalgia it is important to keep my muscles supple, and living with UCTD to keep my joints moving. If that wasn’t enough living with PCOS, weight gain is a lovely unwanted symptom, which of course isn’t helped by lack of movement. Finding a balance is near impossible and at this moment in time the ME exhaustion is kind of taking the reigns.

Dilemma Number 5 – Sun Exposure

This dilemma is one of the most difficult dilemmas I have faced this year for a whole host of reasons. Predominantly because like with many people with chronic illnesses (and people in general) I need vitamin D. In fact a few years ago I was so low in vitamin D it was deemed a significant problem. This was rectified by vitamin D supplements, that was until I developed hypercalcemia and had to stop them. This has meant getting outside in the sunlight has been crucial to stopping my levels dropping again. Getting outside has been difficult for me anyway due to condition flare-ups and a small thing like a pandemic, but now my UCTD has made this an even bigger problem. Developing UCTD I have to be careful to sun exposure and have to be protected at all times – in a nutshell I have to stay out of the sun. Note to self – need vitamin D – but cannot take supplements – and cannot get in the sun – right, got it, amazing!

Here we have my top 5 dilemmas when living with multiple chronic illnesses. The reality is we are all living with a variety of conditions that affect us all in very different ways, so we will never be like for like with each other. I wonder how many you can relate to, or if you have any of your own.

Sarah xx

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

Interactive Online Activities – My Top Picks

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.

Photo by Marcus Aurelius on Pexels.com

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

Chronic Illness · Mental Health · Personal · Social Media

Why Having a Chronic Illness Doesn’t Make You Exempt from Being Kind

I’ve been toing and froing for a while now about writing this particular blog post, but after last week’s article about losing my blogging mojo (which you can find here) I feel it is important to speak about one of the issues surrounding why this was the case.

As I explained before I lost my blogging motivation for a while due to a number of things coming at me all at once (I am glad to say at this moment in time I have started to get it back!), but one of those triggers for me was the land of social media.

From one chronically ill person to another – you do realise being chronically ill doesn’t make your exempt from being kind right? This is a snapshot of a tweet I posted back in August after having someone on social media be nasty about a piece I had written for something outside of my blog. A piece I wrote a few years ago before my blog started, that had been re-shared by somewhere else, whereby I spoke about my very personal chronic illness journey. Normally something like this wouldn’t bother me, we all have opinions right and we are all entitled to them, but on this particular day I had been to hospital and received a health update which I was trying to digest, jumping on to social media for some gentle relief. It was here I stumbled upon to the words of someone who didn’t like the article I had written, and the comment they left was horrible to say the least. No feedback or opinion of how they saw a situation differently, just pure nastiness. What made this worst was it was from somebody who has chronic illness.

Having someone living with chronic illness be the perpetrator as stupid as this sounds was more hurtful than it coming from an abled bodied person. Why? Because whilst an abled bodied/non-chronically ill person has no idea how it feels to be chronically ill – a chronically ill person does. We don’t live like for like lives even with identical conditions, nevertheless we can sympathise with the rocky roads we all face. It was at this point, I wondered why I was bothering, what was the point? My mental health was worth more, so I took a step back.

It would be easy to sit here and say, oh maybe that person was having a rough day and they were venting at the wrong person, but I had just had a rough day which was made worse by this random person. Because in the same way I don’t know what that person was going through, they didn’t know what I was either and that is the very point. When we choose to engage with posts on social media and want to vent or be short-tempered, we are only thinking about our own bodies and more importantly our own minds completely dismissing the person on the receiving end, and what their minds do as a result.

Being chronically ill doesn’t give us a free pass to be rude, nasty or aggressive to others – and it especially doesn’t give us the right to do it to others in the same boat.

Photo by Pixabay on Pexels.com

I know a lot of people may read this and think, well don’t write things if you don’t want it criticised, or that I should develop a tougher skin. How about we all be kind instead, it’s not hard.

Social media can be such a positive outlet in the chronic illness community, but it can also be incredibly lonely. When people choose to blog or write articles or share their personal stories, they are giving a bit of themselves to show others in the community they are not alone in their thoughts and feelings which is a very brave thing to do. What people need to also remember is most people who do this use their time and precious energy to help others normally at no cost simply because they care. Do you have to agree with what someone has said? Absolutely not. Can you have a different idea or share something that works for you? Of course. Is there a way of doing this? Yes, it’s called being respectful.

Criticising people when they give tips that haven’t worked personally for you, or discrediting how someone describes how their illness makes them feel, even arguing with how someone has used the wrong terminology is something we should all be mindful of, because we are all different. We as chronically ill people need to understand that most of our experiences are not going to be carbon copies of each other – we are all living with different symptoms at different severities, with different living arrangements, with different families and different priorities.

I can only talk about my own personal experiences. Doesn’t make me right, but it doesn’t make me wrong either – it makes it mine, my body, my story and I am going to discuss it my way. I am not an expert on any of my conditions, nobody is, but I am an expert on myself.

If you don’t like what I or somebody else writes that is absolutely fine, but give us feedback and support, not hate. The point of the chronic illness community is to bring people up, not put them down, and we all have a role to play in making that happen.

Oh, and to the person who felt the need to be so nasty – I hope it went in some way to making you feel better about yourself, because after this post I sure do!

Now that my rant is out the way (phew!), my next blog post we are going back to something a bit more fun. On my social media (the dreaded social media) I asked people to name a song title that represents their life with chronic illness. I plan on sharing these next time with a few of my own – but if you would like to take part feel free to message me on Twitter or on the email in the contact tab.

Sarah xx

Blog Update · Chronic Illness · Mental Health · Personal · Stress

Losing My Blogging Mojo – and how I am working to get it back

It’s been a few weeks now since I sat down at the computer and opened up my blog. Not because I have been particularly busy or because anything major has been going on, the reality is I just haven’t wanted to. Sounds a bit to the point I know, but I have always wanted this blog to be about honesty so here is mine.

Maybe I should be a bit more specific I haven’t wanted to, not because I am bored with the blog or anything like that. I have just felt like I physically and mentally couldn’t face creating a post. That my motivation had disappeared.

I think this was a result of a combination of things that seemed to come together at once therefore maybe hitting me harder than if each one had occurred separately and I lost myself for a while. Lost my focus, my vision and what was making me happy.

Firstly, as my last blog explained I went to hospital for my first face-to-face appointment in 18 months give or take – more than that it was my first proper trip out of my home for 18 months too. Of course this had an impact on my body in the days that followed (although thinking back I wonder if this impacted me for longer than I even realised). Secondly, I received another two diagnoses and whilst this hasn’t affected me emotionally, I think there was this internal mental battle of ‘when is this going to end’ to contend with. Thirdly, I had an extreme flare-up of one of my conditions that drained my whole being, physically, mentally, emotionally and in all ways possible. Finally, my writing bits received a barrage of rejections, let’s say ‘inputs’, people taking advantage, all wrapped up in a lot of me giving and not getting anything back, all of which couldn’t have come at a worse time. Reading this back it sounds a little cryptic, but I’m planning on writing a post on this specifically next time.

Having all these things hit me practically at once, I think I got inside my own head and the physical and mental exhaustion I would normally feel anyway extended into emotional exhaustion too. I found myself getting into the mindset of what is the point, why am I bothering? What is any of this really achieving? I had/have all these blogging ideas and things I want to share and write about, but my mind couldn’t find the words, my body couldn’t find the strength to sit and get on with it. It was in this moment I thought that maybe I had lost my ability to express myself, my ability to blog and maybe this was it.

Photo by Andrea Piacquadio on Pexels.com

We are a few weeks down the line and the fog in my brain has started to lift and I have started to see more clearly what the real issues are. The issue isn’t blogging because I love this blog and I love the content I have created for it. The issue is me not practising what I preach and not giving myself a break when the inevitable flare-up occurs. I forget how much living with five (plus two more) chronic conditions takes it out of me and even when I am in a flare I battle to carry on, no matter how much my body is saying no. As a result there is only one way I am heading – for an almighty crash!

Now more than ever before this is something I need to work on – especially as we have now entered the period of the year that is always the most difficult for me – Autumn. The change in light has an horrific impact on my health in general including my energy levels and ability to function. Therefore I know flares are coming and I need to learn to balance things sooner rather than later.

But maybe more than anything the issue is me putting myself at the end of the queue when it comes to care. Helping others, endless to-do lists, people’s opinions, not letting people who show no interest in my life down, this blog – all come before me and my health.

So what am I going to do about it?

  • Take the time to prep for the Autumn/Winter months by revisiting my own blog post here – and take my own advice!
  • Purchase a new SAD lamp/light to get that much needed light which will help me through the darker/colder months and ultimately my motivation
  • Cut the crap from my life and all the things that don’t make me truly happy
  • Get back blogging no matter how small – Blogging is such an important creative outlet for me and the benefits it brings to my mental health and my ability to accept my conditions are immense. They say to beat writers block and motivational setbacks, you just need to write, sounds silly right? But doing this blog post today in this manner has really helped.
  • Give myself adequate time away from my blog and everything related to it – To truly put myself first, I need to have days/weeks where I completely disengage from my blog and social media. I am actually somebody who is rarely on social media, but even so I try to pop on it at some point everyday – this is really not helpful! Taking a step away on a regular basis will allow me to focus on what really matters.
  • Go with the flow – A few months ago I talked about having a structure with my blog which consisted of having a week off to focus on other writing bits and pieces. Up until a few weeks ago this was working perfectly, and I would love to say I am going to go back to that, and maybe I will. However at this moment in time whilst I am still trying to get my mojo back I don’t want to put any pressure on myself, instead I want to blog when it feels right for me, however often that may or may not be.

Whilst this blog post may seem a little jumbled, (it is a reflection of my jumbled mind), I hope it has shown the honest side of blogging with chronic illness. There are times when you are so motivated all you want to do is write, write, write, like there isn’t enough space to get your thoughts down. Other times external factors – predominately health related – make you stop and re-evaluate everything you were striving for. It doesn’t mean it’s over, it means you just need to stop and take a breather from time to time.

Sarah xx

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

I Am Me: Positive Affirmations and Happiness Tips

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
Photo by Binti Malu on Pexels.com

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