Tag: Chronic Illness

Catch Up · Chronic Illness · Fertility · Mental Health · Parenting · Women's Health

My First Blog in Four Months

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Well, where do I even start? I guess hello, how are you would be a great intro. It is mad I have come back after all this time away and it feels like I cannot even remember how to formulate a post. So bear with me, if things go a bit awry.

Before we go any further let me issue a TW as the following talks about mental health and fertility/not having children. Please refrain from reading if this is not a suitable subject for you at this time.

It has been a long old time, but I am eventually back. For how long for I cannot say, but hopefully today will be the start of getting back into the swing of things. So where have I been, and why have I been gone for so long? What can I say other than the last four months – actually the last eight months – no in fact 2022 has probably been one of the hardest periods of my life. Quite a bold statement considering I live with multiple chronic illnesses, but it is true.

You know how you have a row of dominos, and you push one and watch the others fall one after another, it has been a bit like that. Just one thing after another with no respite. It started with the stress of moving (which then never happened), and having to recover from the mental and physical strain this put on my mind and body, and believe me when people say moving it is one of the most stressful things you can do they aren’t lying. This was then followed by the unexpected passing of a family friend, then family issues and this was alongside my health being at an all time low. I am happy to say I finally have an appointment for an undiagnosed issue I have and I am hoping this is going to get me on track and give me some sense of control.

In addition to this, the last year has brought up a lot of deep rooted worries I have regarding being disabled and living with the types of conditions I have. All of which has put me in a dark place mentally. Issues such as being a burden, fears for my future, feeling left behind and the ever-growing realisation that I will probably never become a mother. These topics are things I would definitely love to write about in more detail in separate posts as there is so much to it and they are interwoven with many different elements.

I guess you could say I have been grieving in some ways. Which saddens me and angers me all in one go. I say this because I have grieved many times for my life with regards to chronic illness (which took me a hella long time) and I thought I was past it. But I realise now that my grief periods before were all for separate topics – although entwined. Firstly I grieved for the life I had before becoming ill, and the life I had planned, and the second time it was for the loss of my career due to illness. Trust me when I say I went through every stage imaginable – anger, denial, bargaining, depression and finally acceptance. Like I said I thought I was over it now – that I had accepted my life wont be the same or how I had hoped, that my career or in fact my ability to work full stop had to be sacrificed in order to just survive each day.

I wrongly believed when I grieved, I had mourned for everything my conditions had taken from me and then 2022 happened. Last year was the year that both my siblings became parents. One has a baby and the other is about to . Last year was also the year I found out that due to a multitude of reasons including health, fertility, age, lack of partner and medication this is looking less and less likely to be in my future. I was even told that in the off chance there was a slight possibility I should consider freezing my eggs like asap. Able bodied people really do not have a clue when it comes to the bank balance of a disabled person on benefits, do they? I couldn’t even dream of getting that type of money especially when there are no guarantees it would work.

Photo by Dom J on Pexels.com

Even without these million and one obstacles, I got thinking. Could I look after a child? On my own or otherwise? And the honest answer is no, I don’t think I could. Don’t get me wrong there are many many disabled and chronically ill people that have children and thrive, but with my particular symptoms in my particular body with my set of circumstances, I would struggle. That’s when the reality hit me and the heartache began, and it hasn’t really stopped. It doesn’t help that it is baby chat central in my life right now either.

So, what am I doing about it? I have spoken before about new years resolutions and how they are not my bag, but setting goals is an alternative. You can read my article here on the pros and pressures of goal setting if you missed it. Nothing crazy mind, just slow and steady. Right now I am just doing little bits in each area of my life which makes me feel like I am moving forward. Because I think that is the key – moving forward and having a focus in my own world so I stop being getting caught up in others.

I think if there is anything I want from 2023 it is this – to reconnect with who I am and what makes me truly happy. To find peace. And I guess I’d love to take you guys along for the ride.

Like I said earlier, some topics I would like to talk about further mainly to get them out of my own head, but I also want to get back to doing things that act as distractions. Book reviews here we come! Part of me thought about making a second blog to do those types of bits and bobs on, but I thought no this has always been a bit of a jumble so why change it – it either takes your fancy or not, if not move onto something that does. I won’t be offended.

I am probably going to wrap up now, but I would like to say a massive thank you to anyone who has continued to visit my site since my break and who has shared any of my work on social media. I am truly grateful. I know I have some comments I haven’t responded to purely because I haven’t logged on here in so long – I will get to them, better late than never. Speaking of socials I was surprised by how much it has changed recently. Not sure I really need to see how many people have seen my tweets and scrolled on past – but there you go.

As I do not have a set timetable of when I am blogging yet, it is a go with the flow, how I feel on any given day kind of vibe, make sure to give me a follow if you want to keep updated with any new stuff.

Well, you lovely people I’ve done it – an actual blog post!! Party poppers at the ready! Or perhaps I will just go and have a much needed rest with a hot water bottle.

Until next time, stay safe

Sarah xx

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

Chronic Illness · Comments · Diagnosis · Gaslighting · Invisible Illness · Mental Health

What Did You Say? Comments from Doctors About My Chronic Illnesses

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Have you ever had a medical professional gaslight you? Put you down? Criticise something you have said? Or simply dismiss your concerns about your health like they were nothing? Yes? Then you are not alone. I cannot tell you the number of times this has happened to me and whilst some of these comments I have been able to put down as one of those things, others left me reeling.

So in this week’s blog post I thought I would share some of these statements with you. This is not to slate the medical profession because for the most part they do a fantastic job, this is purely to demonstrate how destructive dismissive words can be.

So let me begin…

If you are feeling depressed, then why don’t you look at the Christmas tree lights?

Now, this first remark was said to me I believe in good faith, however it felt extremely rude when I was sat in the GP’s surgery at the time talking about my depression/anxiety recovery. Predominately because it felt like my mental health issues were being discussed like it was nothing, like they could be turned on and off like a tap from doing something as simple as looking at pretty lights. No productive advice was given alongside this, just embarrassment from myself for talking about it in the first place.

You have taken up an appointment/I don’t know why you are at this clinic

I have actually had these two sentences said to me more than once after being sent to various clinics in search of my chronic illness diagnoses. Whilst I understand this can be frustrating to the consultant you have been sent to if they feel like are in the wrong clinic, to say you have taken up an appointment is unacceptable. Just because my conditions didn’t necessarily match up with their expertise doesn’t make my conditions or symptoms any less worthy of investigation, and by saying this it made me want the floor to swallow up like I should be apologising for wasting their precious time.

Critiques on my appearance

I haven’t pinpointed a specific observation on this, however over the years I have had many medical people mention my appearance in a patronising tone. How is this relevant to my health – I have no idea. The worst was probably a consultant who made a point of telling me I had a half closed eye (similar to a lazy eye), to which I listened to him eagerly thinking it was linked to my condition, before a wall of silence. He was merely pointing it out like I had never used a mirror before because he felt like it. I was hoping to leave with a diagnosis or at the very least advice instead I left with a complex.

Photo by Negative Space on Pexels.com

Most women would be grateful they are bleeding less

My periods have been a source of many an issue for a very long time now with one of the first changes being in my menstrual flow. When I went to my GP she told me I should think myself lucky and that most women would be grateful. Never mind all the other symptoms I had or the fact I was only in my twenties at the time and I was concerned they would stop altogether. She sent me away pretty much telling me to get a grip and here I am 5/6 years later waiting to see an gynaecologist because being grateful and thinking myself lucky has left me potentially very unlucky indeed.

I am the doctor, not you

This beauty of a reflection came from my former neurologist who refused to listen to my concerns about being diagnosed as epileptic. I didn’t match the criteria or have the relevant symptoms and my scans were relatively normal yet he was convinced my episodes were epileptic seizures. When asked questions he told me he was the doctor not me and that he knew what he was talking about and I didn’t. I got a second opinion and in my first appointment was told I didn’t under any circumstances have epilepsy. A few appointments later I was diagnosed with Tourettes something my former neurologist could have diagnosed if pride hadn’t stood in the way.

Here we have it five of my most scathing comments from medical professionals. The sad thing is I have many more as I am sure others do too. The general theme I feel from these remarks is a sense of being negatively judged whether it is from my personal appearance to my physical symptoms. The underlying feeling I got was I was time wasting, that it or maybe more accurately I wasn’t worth the respect of proper answers, that I should get on with things.

Like I said at the start this isn’t always the case there are some amazing health experts out there willing to listen, to care and to advice. I am living proof this is the case as I wouldn’t be sat here now with the diagnoses I have otherwise. However, words have power and we should all be thinking how we use them regardless of what profession we are in.

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

Chronic Illness · Invisible Illness · Sleep

Why Sleep is So Important – My Reason Outside the Science

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

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

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

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

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

Photo by Acharaporn Kamornboonyarush on Pexels.com

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

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

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

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

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

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

Sarah xx

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

I’m Here Too – Chronic Illness and Loneliness

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

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

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

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

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

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

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

Photo by Jeswin Thomas on Pexels.com

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

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

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

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

So, how can we combat these feelings?

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

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

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

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

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

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

Sarah xx

Celebrations · Chronic Illness · Personal · Top Posts

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

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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

Activities · Chronic Illness · Films · TV

Film and TV Titles That Reflect Chronic Illness

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

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

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

Films/TV

  • A Million Little Things
  • Afflicted
  • Alone in the Dark
  • Awake
  • Battle Weary
  • Brain on Fire
  • Casualty
  • Death Becomes Her
  • Die Hard
  • Enemy of the State
  • Frida
  • Gone with the Wind
  • Hurt Locker
  • Impossible
  • Inside Out
  • Invasion of the Body Snatchers
  • John Q
  • Lost
  • Love and Other Drugs
Photo by Photography Maghradze PH on Pexels.com
  • Not Going Out
  • Pain Warriors
  • Pieces of Her
  • Prison Break
  • Room
  • Royal Pains
  • Scream
  • Stand By Me
  • The Abyss
  • The Big Sick
  • The Walking Dead
  • Twenty Four Seven
  • Twilight Zone
  • Unrest

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

Sarah xx

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

Weighted Blanket – My Personal Thoughts and Review

memyselfandchronicillness6 Comments

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

memyselfandchronicillness2 Comments

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