Catch Up with Me, Myself and Chronic Illness

17th Mar 2022 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.

Mental Health

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

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

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

My blog

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

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

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

In a nutshell

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

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

Sarah xx

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

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

3rd Mar 2022 memyselfandchronicillness5 Comments

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

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

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

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

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

Photo by RODNAE Productions on Pexels.com

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

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

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

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

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

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

Sarah xx

Chronic Illness · Mental Health · Symptoms

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

17th Feb 2022 memyselfandchronicillness3 Comments

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

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

Mental health and chronic illness with regards to yourself

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

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

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

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

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

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

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

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

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

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

Mental health and chronic illness with regards to managing symptoms

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

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

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

In conclusion

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

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

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

Sarah xx

Chronic Illness · Gaslighting · Invisible Illness · Mental Health

Mental Health and Chronic Illness – Part 1 – Other People

3rd Feb 2022 memyselfandchronicillness1 Comment

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

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

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

Other people
Yourself
The uncertainties/missing out
Managing symptoms

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

Mental Health and Chronic Illness with regards to other people

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

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

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

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

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

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

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

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

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

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

Sarah xx

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

A Round-up of PCOS Tips

20th Jan 2022 memyselfandchronicillness5 Comments

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

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

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

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

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

Food

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

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

Exercise

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

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

Stress

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

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

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

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

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

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

Sarah xx

Chronic Illness · Gifts · Haul · Hobbies

Chronic Illness Friendly Gifts Haul (Pt 2)

6th Jan 2022 memyselfandchronicillness11 Comments

Happy 2022 Everyone!! I hope you are doing well and have had at the very least a relaxing festive period. Here we are back again for another new year and hopefully with lots of happiness on the horizon.

To kick start Me, Myself and Chronic Illness blog for the year, I thought I would follow what I did for my first post of 2021 and that is a chronic illness gift haul. For anyone who isn’t aware, hauls are something I have seen YouTubers do whereby they share what gifts they had for Christmas – but my version of course is sprinkled with some chronic illness cheer. If you would like to read what I got last year check out my first chronic illness gift haul here.

Before I begin I would like to re-mention what I said last time – gifts are not about expense they are about thought and therefore are personal to the individual. I would also like to say that like with anything you read, you should always check with your doctor first about trying any new product, our bodies are all different and as a result what is helpful to one person may be completely inappropriate for another.

Items to keep me warm

I actually used this header last year and that is because I am often gifted items to keep me warm due to being so cold! This last year I was diagnosed with Raynaud’s which as a result leaves me with incredibly cold hands and feet. With this in mind for Christmas I received multiple items to keep my feet toasty including fluffy socks, slipper boots, slipper boot socks (I guess a mix between a boot and a sock) and probably the best invention ever for a cold cat like me – an electronic foot warmer. Let’s just say when the feet go in they do not want to come out!

Other items to keep me warm included pyjamas and a long hot water bottle – ideal for putting in my bed.

Items to keep me entertained

As we know chronic illness life can be a merry go round at the best of times, so it is really important to find things to distract ourselves. I am an avid book reader when my illnesses allow, so I was thrilled to receive a few books including one detailing the life of my favourite artist.

Last year I also discovered my love for cross stitch (I say it like it was an immediate love, but in all honesty it took me several goes to start enjoying it) and again this is often energy and symptom dependent, but when I can do it, it brings me completely in the zone. For Christmas I received some lovely cross stitch kits and patterns to enjoy at my own pace, as well as a lovely craft box to hold all my bits and bobs in.

A Weighted Blanket

I have been umming and arrghing for a long while about getting a weighted blanket, and read various reviews on whether they are good for chronic illness or not. I know some people find them really relaxing whereas others have found them painful for their bodies, so it has definitely been a mixed bag of opinions. Let’s just say I think this really is probably a product based on individual preferences.

I have yet to use my blanket, but I am really happy with getting the opportunity to use this product. It may not be the best for my Fibromyalgia, but I am really keen to see if it makes a difference with my anxiety and comfort levels – and who knows perhaps my Tourette’s? Either way I am really excited to find out and report back.

Sunglasses

Since my diagnosis of UCTD being in the sun has become a prevalent issue for me as has protecting my eyes from any harmful lights. Being gifted a proper pair of UV protection sunglasses is not only a thoughtful gift, but a necessary one.

Other Items

Diary – Great to keep track of my appointments, blood tests and medication ordering
Money – Always a much needed gift when living a chronic illness life
Make-up/Clothing – To make me feel like a functioning human being even if at times I am far from it

All the gifts I received last Christmas (I almost fell into the trap and put this year) are gifts I am incredibly grateful for because they are gifts which aid in helping me manage my symptoms whilst also factoring in I am more than chronic illnesses.

Gifts aren’t about expense or quantity, nevertheless I wanted to show a realistic haul representing a life like mine and that could give ideas which may be of benefit in the future.

How did your festive season turn out? Are there any chronic illness friendly gifts you received that would benefit others? If you would like to share I would love to hear them in the comments.

Here’s to a fab 2022 for us all 💕

Sarah xx

Chronic Illness · Mental Health · Personal · Review

Review of the Year 2021

16th Dec 2021 memyselfandchronicillnessLeave a comment

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

Christmas · Chronic Illness · Outfits · Tips

Chronic Illness Friendly Christmas Outfit Ideas

2nd Dec 2021 memyselfandchronicillnessLeave a comment

As we head into the month of December, I can safety say I am getting in the festive mood. Films have been selected (see my top picks here), activities decided (see my Christmas activities post here), and gift ideas are taking shape (check out my low energy/low cost ideas here). All of which have of course been taking into consideration my Christmas on a budget chronic illness lifestyle (see post here).

Next on the list is what to wear. What to wear over Christmas really isn’t a major deal, clothes are clothes at the end of the day. I personally am not going to be going anywhere for Christmas, nor will I be having visitors making it probably matter even less. Even so, Christmas is one of the few times of year I really look forward to and therefore I want to feel I am getting in the spirit regardless.

Getting ‘dressed up’ for the festive season doesn’t necessarily mean dressing up in the traditional sense and it certainly doesn’t mean spending money. It can be as simple as pulling something out of your wardrobe you have wanted to wear for a while, embracing your favourite hoodie, or wearing some jazzy accessories. The key factor is do what makes you feel happy and most of all what makes you feel comfortable.

Clothing idea number 1 – Anything (and I mean anything) that screams Christmas!

I am a Christmas fanatic plain and simple, and I love anything that has xmassy designs on. Think jumpers, t-shirts, shirts, dresses, ties, even socks – the list these days is endless. The best thing being that most of these items – especially the classic Christmas jumper – can be worn dressed ‘down’ yet still make you feel you have made an effort and gotten into the festive celebrations.

Clothing idea number 2 – Pyjamas or Onesies

Xmas is definitely that time of year where you have the perfect excuse to wear your best chronic illness outfit without any shame – enter the humble onesie and/or pyjamas. Most people chronically ill or not spend at least some time over this period in some sort of nightwear – right? Ok, just me then! Either way, they are incredibly comfy and warm, require zero effort and are the perfect outfit to zonk out in front of the telly with a chocolate or two.

Clothing idea number 3 – Loungewear

Whilst similar to option 2, loungewear is ideal for those of us who don’t like the idea of sitting around in a PJs or a big reindeer onesie when they are with others. Again loungewear can be incredibly comfy and relaxed, but add maybe a bit more glam to your look than a big old T-shirt. Think sweatshirts, hoodies, jogging bottoms and chunky cardigans. Mix and match different colours and styles or go matchy-matchy for a more put together look.

Clothing idea number 4 – Loose fitted items

Ok, I am sure there are some people out there who are not impressed by my ideas so far. Because having chronic illness doesn’t stop people wanting to make an effort and feel like everyone else whilst celebrating. I hear you, in fact for me I tend to ‘dress-up’ more on Christmas Day and New Year’s Eve regardless of my symptoms – even if it is to sit in the house – and then dress comfy for all the time in-between. However, even if I am throwing on an actual outfit I always make sure to pick loose fitted items with stretchy waistbands and temperature sensitive materials. Expanded stomachs and digestion issues don’t stop because it’s Christmas day – if anything it can be worse! PCOS sweats combined with Raynaud’s chills don’t quit because it’s the season to be jolly. Therefore, always pick items that you know will be suited to your body’s individual needs and be confident you can still look amazing!

Clothing idea number 5 – Accessories

Regardless of what you have or have not decided to wear, know that any outfit can be completely made by the accessories you rock. Whether that be a pair of jazzy tights, a pair of cute earrings or a pop of colour on your lips, one simple item can help to make you feel magical even if you don’t feel it inside. If all else fails, stick on a Santa’s hat and be done with it!

Here we have it my chronic illness friendly Christmas outfit ideas. Of course, nobody is under any obligation to wear any specific item to get into the festive spirit – Christmas means different things to us all and therefore so is how we choose to spend it.

Remember you can share your own outfit ideas in the comments below. Do you tend to veer for more casual looks or smarter options? Oh, and anyone who would like to share their Christmas jumper picks this year, I am all ears!

Sarah xxx

Activities · Budget · Christmas · Chronic Illness · Tips

Christmas on a Budget

18th Nov 2021 memyselfandchronicillness1 Comment

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

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

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

Presents /Gifts

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

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

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

Decorations

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

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

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

Food

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

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

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

Other Things to Consider

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

Final Tip

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

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

Sarah xx

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

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

11th Nov 2021 memyselfandchronicillness8 Comments

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

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

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

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

Dilemma Number 1 – Body Temperature Issues

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

Dilemma Number 2 – Managing Fatigue

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

Dilemma Number 3 – Pacing

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

Dilemma Number 4 – Exercise

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

Dilemma Number 5 – Sun Exposure

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

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

Sarah xx

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