Category: Personal

Catch Up · Chronic Illness · Mental Health · Personal · Symptoms · Women's Health

Catch Up with Me, Myself and Chronic Illness – September 2022

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TW – Discussion on mental health – please refrain from reading if this isn’t a topic suitable for you at this time.

I cannot believe it has been approximately two months since I said hello. This has been the longest time I have ever been away from here. With this in mind I think today would be an appropriate time for us to have a good old catch up. Having a catch up can only mean one thing – I have been struggling. I say this because when I have been through periods of struggle this is how I get back on track, I come back on here, have a therapeutic rundown of what’s gone on and try to move forward. I guess you could say this place is my therapy.

I feel I am going to repeat myself for the hundredth time by saying my health has been very up and down again, but sadly it’s the truth. Well maybe not exactly the truth because I am starting to see some patterns in my symptoms in relation to one of my conditions. So whilst it is very up and down I can for some part see it coming. This is great I would have once told myself, but actually knowing makes zero difference because I cannot stop it or ease it even, I just have to get through. And I’ll be honest there are times when I don’t know if I can.

One of the most difficult things regarding this condition (an undiagnosed gynaecological issue) is that the flare up is taking two – two half weeks of my month every month – and this is without my other conditions. If you follow me on social media you will see me regularly posting that ‘I am trying to get on top of messages and comments’ or that ‘I have been in another flare’ because in reality for big portions of this time I am just too ill to function.

Without going into too much detail the flare up follows a regular pattern of symptoms with various stages of severity, and the final stage is torture. This part includes fatigue, exhaustion, headaches, foggy head all rolled into one that is so severe my mental health goes to an all time low, and when my mental health dips that’s when I am in trouble. I say this because whilst my physical symptoms dramatically affect my life, I can still escape in my head. Escape for me comes in the form of writing, reading, crafting, even daydreaming. When fatigue and foggy brain hit alongside a real alteration in my hormones, I cannot do this things – I cannot look at a screen, I cannot see words in a book and therefore my escape is gone, and I am left alone with my thoughts. Not just thoughts actually, but a real lack of motivation, or interest in much at all, and at times it gets quite dark. To a point where I didn’t even know if I wanted to blog anymore. That anything I had to say was boring or pointless, or that any idea I had I was unable to articulate in the right way so why bother.

I think essentially the over-riding feeling I feel in these episodes is one of being trapped, not knowing where I am going to go and what I am going to do with my life whilst in this body. The what’s, the if’s and the maybe’s. But then the fatigue and exhaustion lifts, the hormones balance out again and the fog subsides and then things seem brighter again and my mental health slowly goes back to my normal.

The problem is I know it will probably be the case again next month. It’s ok, but not ok if you know what I mean. I guess I am happy that I have identified it, so when (or let’s be positive – if) it happens again I know it is hormonal and therefore it will pass. I just need to hold on to the fact I will get through to the other side even if it does take time.

I won’t lie though because I know the pattern with this particular condition, I am beating myself up something chronic (excuse the pun!) to get back on track. Because I already know I have approximately a week before the start of my symptoms begin again, and I feel this overwhelming need to make the most of now. Of course, I cannot predict if my other conditions are going to cause problems during this time, but even so I feel I need to do something before I can’t. I am pressurising myself because good days are becoming less, and I don’t want them to be.

Photo by Kristina Paukshtite on Pexels.com

On top of this my household has suddenly decided now would be an excellent time to move house. Right when I am struggling and right at the time of year when things like my Fibro tend to get worse. The thing is there is never going to be a perfect time but it is just another stressor my body has to contend with. I have no proper place to write from, there are just boxes everywhere, and my Tourette’s is having a field day.

There are a few other things I am having to deal with that I may or may not share at a later date – it’s just a lot right now.

I hope this doesn’t sound like a rant. I feel this has been a bit all over the place, a bit like my head. Part of me thought about deleting it and starting again or just leaving it altogether, but then I thought why? This blog is supposed to be about the reality of living with chronic illness, and right now this is my reality.

This entry today has been more to refocus myself than anybody else let’s be honest. To help me move forward. Like I said at the start; this blog is my therapy.

I know I need to be kind to myself. But sometimes it is hard. It’s a time thing, a take it day by day thing. It will come, it always does.

In all honesty with a move on the cards and this consistent cycle of ill health I cannot say for sure when I will be back again. Hopefully it won’t be too long and you will stick around for when I do.

I hope if you have read this today that all is well for you, and at the very least you know you are not alone.

Sarah xx

Activities · Bag · Chronic Illness · Personal

What’s in My Bag – Chronic Illness Edition

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

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

So, let’s take a look…

Sun hat, sun tan lotion and sunglasses

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

Medication

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

Pen and paper

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

Photo by Pavel Danilyuk on Pexels.com

Mask and hand sanitiser

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

Snacks

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

Walking stick

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

Ear defenders

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

Other items

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

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

What about you? What’s in your bag?

Sarah xx

Celebrations · Chronic Illness · Personal · Top Posts

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

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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

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

Weighted Blanket – My Personal Thoughts and Review

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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

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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 · Personal · Review

Review of the Year 2021

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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 · Mental Health · Personal · Social Media

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

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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

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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.

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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

Chronic Illness · Diagnosis · Hospital · Personal · Stress Management · Tips

My First Face to Face Hospital Visit Since Covid – and how it went

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A few weeks ago I mentioned in my I Am Me: Positive Affirmations and Happiness Tips blog post (here), that I was preparing to go to hospital and today seemed a good time to share with you my experience of visiting a hospital for the first time since the pandemic started.

I wanted to share this blog post not only because I wanted to share my health journey, but because I wanted to help others like myself who may find their face to face appointments have started up again, and who are therefore scared at the prospect of attending, in the hope it can can give you some peace of mind with what is to come.

Firstly let me point out this is my experience at a hospital – this doesn’t mean you will have the same experience as me, and therefore you should contact your place of appointment with any concerns you may have.

The Last 16 Months

Like many people for the last 16 months or so, my consultations with my specialists have altered dramatically. In the early days of the pandemic the hospitals requested I had telephone appointments as opposed to my normal face to face ones, which provided major relief knowing I didn’t have to attend in person. During this time one of my newer conditions developed rather rapidly and I was placed on medication with more regular contact with the consultants, turning my review from every 6 months to 3. It was then they said they wanted to see me face to face.

Face to face appointments quite frankly filled me with absolute dread, I have hardly been out of my home for the past 16 months so the thought of going to hospital where there would be sick people was not something I was volunteering for. So, I kept putting it off and getting around it by changing them to phone appointments (which I managed to do for a while) until I had no choice but to go.

My Hospital Trip

The first obstacle for me in my hospital trip was getting to the hospital itself. I do not drive and neither do those close to me. To make matters worst I do not go to a hospital in my local area due to my requirements. So, it was organised that I would go in a community car – essentially like a taxi – which is run by volunteers and that you pay for, but who sit and wait for you in the car. My driver wore a mask which was reassuring on the long drive, as did I, then I got to the hospital.

It was rather strange turning up at a hospital and seeing so many people for the first time in over a year. I won’t lie, I was a little startled especially as some people were maskless on the walking up to the front doors, and instantly taking their masks off on their way out – no thought of the people coming towards them. Nevertheless, once inside the hospital there was a sanitiser station and masks you could take if you didn’t have one (maybe that was why there were people without them), and markings on the floor for a one way system.

Of course, my clinic couldn’t be on the first floor so I had to go in the lift (which luckily was empty), but nonetheless had markings on the floor to give you space and to face away from others if needed. Once inside my clinic there was another sanitiser station and the seating was for a max of 8 spaced out. Thus giving reasonable amounts of space away from other patients. The staff were all wearing masks as were the other patients, and people respected other peoples’ space without complaint.

Photo by Sandy Torchon on Pexels.com

I had felt really nervous going into the hospital, especially as I knew I would have to remove my mask in the appointment due to one of my symptoms, but I was surprised by how comfortable I was in the end due to the kindness of the staff and the patience of those around me. Probably my most uncomfortable part of the experience was going into the hospital and walking through the corridors (as there always has to be one or two who cannot follow simple instructions of a one way system!), but overall my stress levels subsided as the trip went on.

What I found helpful is my particular hospital (I am not sure if this is the case everywhere), had a video you could access online beforehand which showed you what to expect at the hospital – from the layout of the floor markings to the sanitiser points – which helped in showing me things were in place. If you have this facility, I would recommend using it just for peace of mind. I would also recommend taking your own sanitiser, face masks etc. because if you are like me it is nice to have your own things as a way of feeling prepared.

FYI – Make sure to check your face mask is the right type of mask to have in a hospital environment, so you don’t have to change when you get there.

My Health

So, while we are talking all things hospital, my appointment went well. Well as well as a chronic illness appointment where there is no cure can go. I have received another two diagnoses (woo hoo – I am collecting diagnoses like some people collect stamps!), and I am being sent for a scan and more bloods. Oh and a whole lot of monitoring!

At this moment in time I am not ready to discuss these new diagnoses. I think for now I would like to let this sink in for myself, because as much as social media and blogging may make you believe – you really don’t have to share everything.

Aside from some missing blood results and a lost letter to my GP (cannot wait to have to sort this out!), for me this was a good appointment. Not because I want these things to be the case, but because my suspicions were confirmed and therefore I am not losing my mind. But more than that my consultant listened and was kind and those things count for a lot. It really is something when you get to a point in your health where feeling listened to is all you want and need – it really makes the difference – now if only I could get my GP to do the same….

In conclusion..

The reason for this post today was to help anyone feeling anxious about any upcoming hospital visits to feel more positive and relaxed. I hope I could do that and show it is not half as scary as you might have first thought, but to recap..

  • See if there is any info online before you go such as videos to give you an idea of what to expect
  • Take your own bits and pieces such as hospital approved masks and sanitisers
  • Follow any guidelines
  • Practice those positive affirmations – see start of this post
  • Focus on what you are doing not everyone else! I didn’t mention this earlier, but I really think you need to remember the only person you can control is yourself. Don’t worry about what others are doing, just focus on what you need to do and that is more than enough!

I also wanted to take this moment to thank anyone who wished me well before my appointment – your kind words mean the world 🌍❤ !

Sarah xx

Anxiety · Mental Health · Personal · Personality

How it Feels to Be an Introvert in Your 30’s – and how it differs from social anxiety

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An Introvert – A shy, reticent person. A person who is often described as quiet, reserved, passive, rigid, silent.

I am happy to say that at the age of 33 I am finally able to come to terms with the fact I am an introvert. Come to terms sounds a little odd when it is only just a word, but the connotations we put on being a shy person in society means that ironically, we often shy away at the notion of being one. Being an introvert implies a level of embarrassment often put upon us by extrovert people who are ‘so out there’ and confident that nothing you do can quite compare to their lavish lifestyle and personalities.

Whilst I now accept my introvert self there has been many moments in life where this has been difficult, fundamentally in regards to my health and interactions with others.

Anxiety vs Introversion

It is no secret if you have been following my blog or have read any of my previous mental health posts, you will know I have suffered with anxiety for the majority of my life. Anxiety in the form of generalised anxiety and OCD, but predominately social anxiety.

Having anxiety has meant I have always been someone who has avoided social situations, kept out of the limelight and tried to be invisible in group scenarios. When I was younger these situations would give me physical symptoms of nausea, shaking, uncontrollable butterflies and notable fear. So much so it stopped me participating in the same way with things as my peers would and interfered with my day to day life.

When I got a bit older I improved and tried to force myself into more social situations. Sometimes this worked and sometimes it didn’t. Sometimes I found myself experiencing the overwhelming symptoms of my social anxiety and sometimes I found I just didn’t enjoy being in these situations.

Yet I would push and push myself because that is what everyone around me wanted me to do. Being so quiet wasn’t healthy, being so painfully shy was not going to get me anywhere in life. Not wanting to engage with people was clearly a huge mental health issue waiting to happen. So, I would continue to force myself to please those around me even though I knew it wasn’t want I wanted.

It was only during a workshop I attended for anxiety and depression that this mentality changed, as the facilitator said something that changed my life. He said there was a big difference between wanting to be social and having anxiety hold you back, and just not enjoying being overly social. It was in this moment it hit me, yes in group scenarios with lots of people I didn’t know (or in some cases lots of people I did know) I experienced social anxiety, but in other situations whereby there was only one or two others I was avoiding this situations not because I was anxious, but because I just didn’t want to go – being around others was just not something I overly craved. My personality quite simply didn’t warrant being around others all the time.

My social anxiety was indeed a mental health disorder, but my introverted personality was just that an aspect of my personality. It wasn’t necessarily something to be worried about, it was part of who I am. Realising there was a difference between my introversion and my anxiety was incredibly refreshing and as a result helped me come to terms with who I am and not what others want me to be.

Photo by Karolina Grabowska on Pexels.com

I except my introversion why can’t others?

The problem with having social anxiety alongside an introverted personality is the fact people assume the whole of my behaviour is associated with my mental health. Me not wanting to meet up with someone automatically equates to me being too ‘mentally unwell.’ Not that I may just not want to.

Of course being an introvert also impacts on how people deal with my chronic illnesses in general, and how it affects people’s perception on my not only my mental health, but physical health too. Maybe because I am so quiet or passive I must not know my own mind, and if I don’t know my own mind maybe I don’t know my own body or my own health.

Being in my 30’s causes more problems with people’s perception on my introversion because being in your 30’s you are expected to have your shit together and to be an overtly confident individual. That I should be able to take charge of my life and have my life set on this particular path – what people don’t understand is it is my chronic illness that has slammed the breaks on that, not my personality traits.

But that’s just it I am confident in who I am, I just don’t display that in a extrovert way. I don’t feel the need to hold attention in a room, or be the main attraction instead I prefer to listen than talk, I prefer to express myself through the written word, I am comfortable in my own company and I enjoy solitude.

Being in my 30’s and having anxiety is a slightly different ballgame. It holds me back from big social gatherings (although these days it is definitely not a loss), and if I were in a position to work it would definitely change the type of environment I would thrive in. But saying that taking my anxiety away wouldn’t change the person I am. I would still be an introvert.

The positives of being an introvert

It’s funny how much the words often used to describe an introvert are that of a person who is almost dialling it down in life. Someone who is taking a back seat, someone who is often overlooked. I feel it is on the contrary, it is just someone who is living life in a different way.

An introvert, A thoughtful, creative person. A person who I would describe as curious, loving, observant, committed, focused. Something and someone to be proud of.

Sarah xx