Chronic Illness · Diagnosis · Gaslighting · Personal

Why Hasn’t Receiving a Diagnosis Changed My Doctor’s Opinion on My Health?

This week I wanted to talk about a topic that has bothered me for a long time, which has recently been re-ignited – My doctor (GP) believing there is nothing significantly wrong with me despite several diagnoses.

Let me start off by saying I think GP’s get a lot of stick which a lot of time is unwarranted. GP’s are generalists, they cannot be expected to know everything about every condition going hence the need for specialists. Saying that in my opinion they still have a duty of care to listen to patients concerns, and I naively believed once you received a diagnosis and had a specialist saying there was something wrong ,they would listen more .. or not.

I was gaslighted by many a GP for several years before receiving any of my diagnoses. This constant barrage of being told I was stressed, depressed, anxious and just frankly over the top. Every appointment I attended I was made to believe I was time-wasting. Until one day I went to a neurologist and received diagnosis number one. Then several years later saw a rheumatologist and received diagnosis two. A year later another neurologist for diagnosis three. Another year diagnosis four and finally 18 months ago another rheumatologist for diagnosis number five. Five separate diagnoses for five separate conditions made by five separate specialists and my GP never batted an eyelid.

To this day my GPs still refer to my symptoms as nothing to be concerned about. My conditions as low level diseases, and any query I have about them is quickly dismissed. I have even had GPs disregard what specialists have told me claiming it isn’t as bad as it has been painted. If this wasn’t enough, they ignore my constant irregular blood results and fail to monitor me on my medication – but why?

This last week alone I had symptoms that bothered me which I had to request blood tests for, because my GP hadn’t been monitoring me. That didn’t bother me because what’s makes me special? I am no more important than the next person in the queue. What bothered me though, is the fact my bloods were abnormal and no-one bothered to tell me, or check my medication, and that’s what I struggle with – why it doesn’t matter. Why it doesn’t matter when they have it all over my notes I am living with multiple conditions, and that I am being investigated for another condition for which things like blood results are important.

Photo by Thomas on Pexels.com

Is it because they are too busy? Is it because I live with invisible illnesses and therefore don’t look ill? Is it because I am not their ideology of an unwell person? Is it because they are still holding on to their misconceptions of me before my diagnoses? Or is it because in their great handbook of conditions they simply don’t view mine as important?

I don’t know what I thought would happen once I was diagnosed, but a bit of respect would be nice. I might even push the boat out and say I thought I might start being believed, but maybe that is too much of an ask. Being diagnosed hasn’t changed anything in my doctors’ eyes, in fact in some ways it has made the gaslighting worse. Because by having diagnoses my doctors cling onto them whenever new symptoms are experienced, and explain away anything new as part and parcel of what I already have. This would be fine of course if these new symptoms were just that – part of my other conditions – but it was this dismissive behaviour that meant my latest condition was missed. It felt like being a thirty something year old they refused to believe I can have multiple things wrong. But guess what I can and I do, just like many others.

People don’t choose to be ill, and age isn’t a factor when it comes to becoming ill which is why chronic illness discrimination in people under the age of 50 has to stop. Chronic illness can occur in any person at any time in their lives and GPs need to understand this. Being young doesn’t make you less susceptible to illness, less likely with to develop certain conditions maybe, but age doesn’t make you immune.

Maybe the crux of the problem is not just age, but chronic illness in general. Maybe too many a doctor has been told to read the ‘self-manage’ riot act to any person with an incurable condition, and as a result have lost touch with the feelings behind this. Sadly, I think GPs sometimes think it is only having a life-limiting condition that is relevant, but having conditions that are life-altering are also significant. The mental health implications of life-altering conditions are significant.

So what would I like to see in an ideal world? In an ideal world I would like GPs to offer patients’ the respect they deserve. Whether a GP believes a condition is serious or not is irrelevant because it is serious to the patient, and they are the ones living with it everyday. It may not be their job to find solutions (and with chronic illness they can’t), but it doesn’t stop them taking a phone call – and it definitely doesn’t stop them explaining an abnormal blood result – what’s more it doesn’t stop them from showing compassion.

Do you still have struggles with your GP after diagnosis? I would love to hear other people’s experiences if you would like to share.

Sarah xx

Awareness · Mental Health · Tourette Syndrome

The Mental Health Impact of Living With Tourette’s

Another month and another awareness event – this time we are talking Tourette Syndrome – TS (15th May – 15th June).

For anyone reading this thinking ‘ahh this has no relevance to me, I’ll just skip this post,’ I encourage you to think again. I say this because isn’t this what awareness is all about, learning about conditions which you may not have known about before? I am aware that my Tourette’s posts are the least viewed content on my blog and this makes me sad, because as far as conditions go my Tourette’s is just as relevant as all my other conditions and therefore it is important for me to write about this as much as anything else.

If you are still here then thank you, I appreciate you sticking around and wanting to learn more about my ticking world. Today I wanted to talk to you not about my life with tics (you can read more on this here), but the mental health impact of living with such a condition.

Like with any condition we all deal with it in various ways and TS is no different. Some sufferers use humour, others shy away and some people really find it difficult to accept it into their lives. I am someone who accepts my tics and embrace them as a part of who I am, I can even laugh about it from time to time (with close family), nevertheless I suppress my tics in public due to the negative feedback I have received from others. I have had people laugh, stare, point and be disgusted simply by me mentioning the fact I tic.

Examples of times I have had someone ridicule my TS include:

A former work colleague telling me she was glad I suppressed my tics to save the embarrassment and distraction for everyone else.

A new job revoking my position once they found out I had TS. One minute I was filling out the paperwork being told my hours, the next I was being told the job was no longer available (after he read the ‘any health conditions’ section).

Another example of indirect taunting was after a dating show on television featuring someone with tics had aired. This person showed so much bravery going onto a programme to find love with their tics and yet I had colleagues sat on another desk laughing about it. They didn’t know I was a fellow sufferer, but that wasn’t the point. These people were supposedly educated, clever individuals and yet they were mocking someone from my community for being different.

I would like to say these were the only occasions, but sadly the list goes on…

Photo by Tara Winstead on Pexels.com

Looking back I wish I’d had the strength to stand-up in these times of discrimination, but instead I concealed my TS more, bowing down to ableist views on the world. Saying that though should I have had to stand up, or should others be more aware of their behaviour towards people who are not the same as them?

Having a condition that people would prefer you kept to myself because of others discomfort, or that people laugh about has a huge impact on mental health. Not only because it makes you want to change yourself to please others, but because by mocking sufferers the message being sent out in the world is that TS is not a serious condition. Tourette’s is a neurological condition which can be painful, tiring and in some cases life-altering – would people laugh at other neurological conditions in the same vein? Do people openly make fun of other people in pain and fatigue, by making them the punch-line in an insensitive gag? Some of you may think yes, but as someone with a multitude of conditions with these type of symptoms it really isn’t in the same ballpark.

We now live in a world where mental health is finally being given the recognition it deserves, so isn’t it time we start considering how our own behaviour can have an impact on how someone else feels.

Taking inspiration from the Tourette’s Association’s shareable stories I wanted to say Tourette’s isn’t a punchline, a quip, an excuse or a slur it is a mark of determination, bravery and courage. The determination of a teenage sitting their exams whilst battling to concentrate, the bravery of a man opening up to his date for the first time, the courage of a young woman telling her potential employer about her condition then getting overlooked anyway.

With all this said, I wanted to finish off this post by asking anyone reading this to take the Tourette’s pledge. A pledge to stop using Tourette’s as a slur or a punchline. A pledge to see Tourette’s as a condition that is as important as any other. A pledge to help us break free of the stigma. A pledge to show others they are accepted for who they are and not what their tics do.

Thank you for your support 💕

Sarah xx

Blog Update · Chronic Illness · Personal

Blog Update

Hi Everyone – So this blog post is a little late considering I said I would do it after the blog’s birthday post – sorry for that. Awareness month came along and I thought it would be good to do a couple of posts for that, but anyway here we are..

For anyone who read my blog birthday post, I said I would discuss how I would be structuring my blog posts going forward. I have given this a lot of thought because I have always been keen for my content to be meaningful to not only people who read it, but to me too. I am brimming with ideas, but feel I need more of a structure. So from June onwards I have decided to do the following:

  • Have the first week of each month off from the blog to focus on other writing bits and pieces – I have been doing this for a little while now and I think it works better than me trying to write about multiple things at the same time and risk repeating crap!
  • For the rest of the month do 3/4 blog posts (one a week – like normal) depending on how many weeks in the month there are.

Of these blog posts I would like to do:

  • 1 post on mental health
  • 1 post on chronic illness/condition specific
  • 1 or 2 posts on a particular topic obviously related to chronic illness e.g. work, hobbies etc. etc. I would be really keen to hear if there are any specific topics anybody would like to request. You can find me on the contact tab above if you would like to make any requests. If not no worries, I have plenty of ideas.
Photo by Pixabay on Pexels.com

On a slightly separate note, I recently wrote (I say recently it was finished several months ago and it took me an age to do!) a short fiction piece on chronic illness which I tried submitting for something else, who didn’t believe it was for their audience. I know, I know chronic illness is such a boring theme right? Anyway, I want to do something with it and not have it sat in a folder so if anyone knows of anywhere I could send it please let me know. If not, I was considering sharing it on here – maybe I could put it under a tab or something so it doesn’t get mixed up with all the other content – because although it is a short story it is an extended short story!

So this is the plan – for now. Because let’s be honest, things may go out of the window depending on life. My health may mean scaling back, or certain things may take my fancy one week and not another. But, this is my current plan.

Thank you for taking the time to read my post today – let’s face it this was more for me than for you and was a chance to get my thoughts straight. Even so if you got to the end of this post – thank you for your support!

According to my plan I have next week off, so see you the week after.

Sarah xx

Activities · Chronic Illness · Letter · Mental Health · Personal

A Letter to My Chronic Illnesses

Dear Multiple Chronic Illnesses,

It is strange to think we have known each other for the last eight years, maybe more, and yet it is only now I have decided to speak directly to you and not just about you. To be honest, I think it has been the recent awareness days/weeks that has made me feel I need to speak to you one on one. Let me make this clear there may be five of you, but for the most part I am going to address you as one, seeing as you all make me feel the same way.

For a long time, you have been a stranger to me – somebody I have kept at arms length whilst trying to find reasons to why the both of us cannot and should not co-exist. I am not surprised I felt this way, you did decide to enter my life in the period that should have been the best days of my life, hitching a lift on a body that didn’t belong to you. Nevertheless you did and you have hung on ever since, digging your heels in as I tried and I tried to shake you off.

How does it feel knowing you have robbed me of precious time? Knowing that because of you and your power over me, my ability to live a ‘normal’ life is long gone. Knowing that with you by my side, the future terrifies me.

The thing that gets me about you the most is, the fact you want to be so noticeable to me, yet invisible to everyone else. It’s almost like your a performer in a pantomime – you know when the audience screams ‘their behind you’ and the person on stage turns round and they’ve disappeared – only this is in reverse. I’m in an audience of one whilst everyone else is on the stage struggling to see what I do.

You know how cruel that is to do that, right? To not only make me suffer physically, but to make others question my sanity too. To be laughing at me, as eventually I started to question it myself. I’m curious do you ever think of the mental health impact you have had on an already anxious mind? Did it ever bother you watching me get gaslighted time and time again by many a health professional and even people who knew me?

Photo by Castorly Stock on Pexels.com

When all is said and done, there is really only one question I would like to ask you – why me? What was it about me and my life that made you want to tear it up so badly? Was it my accident, my struggles in life, my mental health, or was it random? And why was one illness not enough, why did it go to two and three, then four and five, why did you need me to keep gathering illnesses like some people gather junk? I guess my initial ‘I have one question’ was a bit off – maybe I have several – but that’s what carrying you around does to me, it constantly changes my direction.

Over the course of the last eight years my life has changed it’s path on so many occasions. You have single-handedly stopped my working life, my relationships, my social life and my future plans. I should hate you, and trust me at times I really really do, but you’re apart of me, so if I hate you am I not hating myself too? Hating you won’t change anything though because I now know you are here with me for the long run, and for us to get through it we have to work together.

I know this is still a work in progress at times, but I don’t know about you I feel we have been working more in sync lately. Like with any relationship though it’s give and take, and you definitely need to work more to match me in the giving department. I know, I know, it’s all about you, like literally all day everyday, but you have to give me some air time too. I get it you thrive off attention and you find nothing more enjoyable than rearing your head when I least expect it .

But, guess what? It is me who is going to have the last laugh. That’s right, me! Because I am no longer trying to run from you, no longer hiding from you and no longer trying to find a way to push you off the moving train, because I accept you. And because I accept you, you have no power not really.

You see you are the weak one, not me. That’s ok though, I am strong enough for all six of us.

Sarah xx

Awareness · Chronic Illness · Fibromyalgia · ME/CFS · Mental Health · Tips

The Month of May – Awareness Days/Weeks

Wow the month of May really is a busy one when it comes to awareness events. Especially when three of your conditions have their awareness days all in the same week, the same day even!

We had Fibromyalgia awareness day on Wednesday 12th and depending on where you are in the world for the whole of May. M.E awareness day again on Wednesday 12th and awareness week 10th-16th May. Finally, Mental Health week from 10th-16th May.

For more information on living with each condition – check out my previous blogs posts here: Fibromyalgia, ME/CFS and Mental Health.

Why are awareness days significant?

Many people would argue that technically awareness of conditions should be something that is happening all year round and not just at a particular time of year, and I would agree. However, awareness days are great for a number of reasons too.

Firstly, they help you to engage with others with the same conditions as you come together to get the word out.

Secondly, when there is an influx of information on social media things are more likely to be seen and read rather than be dismissed, with the hope to educate others.

Thirdly, it can help to reach people who may be struggling and give a sense of community.

Finally, they can hopefully help to raise some much needed money for the charities that help us the most.

The downsides to awareness days

As someone with a chronic illness you can often feel an overwhelming pressure to fly the flag for your particular condition, like it’s your duty. When you blog about chronic illness, you can feel an obligation to do something to show support.

This year I started out with vigour, researching what different charities were doing for the day/week (online of course), and made a conscious decision that I would show my support with various ones in order to represent all three of my conditions. All it would take was sharing a few social media posts each day, and completing a few ways to wellness activities (mental health related).

Day 1 was great, I felt positive and productive and by day 2 I crashed. A mere two days in!! To begin with I couldn’t understand this overwhelming fatigue – sure I am used to it happening, but usually I have an idea why. Then it hit me – it was the awareness planning. Not necessarily the tweets themselves, but the planning of what to write, accessing templates, when to send them, and the fact I was trying to do it for three separate conditions.

Photo by Andrea Piacquadio on Pexels.com

It was this moment I decided I had no choice, but to scale back. Still show my support yes, (luckily I had scheduled several tweets to go out later in the week), but to stop and put my needs first, and if able to pick it up a few days later.

In hindsight, I think maybe I should have picked one condition to focus on , or maybe one day. Nevertheless I did my best and that is enough. Wow wee, with comments like this I think my mental health has definitely improved!!!

What I am trying to say is you should never feel guilty for putting your health first. As I mentioned at the start of this post technically awareness is all year round, not just for one day or one week.

What you can do to raise awareness.

Equally if you do feel like you would like to do something, don’t be confined to a date and make it an action that is doable for you. You could:

  • Re-tweet or share a post
  • Start a conversation with a loved one
  • Direct people to your favourite charity
  • Make a piece of art
  • Donate or purchase an item from an online charity shop
  • Share your story with others

Being chronically ill you are raising awareness all the time through the people you meet and your family and friends. In turn these people will also raise awareness when talking about your situation with others, and hopefully the domino effect begins. This is what awareness is all about – changing perception, teaching others and getting the word out there.

Sarah xx

Celebrations · Chronic Illness · Mental Health · Top Posts

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

Happy Birthday to you, Happy Birthday to you, Happy Birthday Me, Myself and Chronic Illness Blog (bit of a mouthful), Happy Birthday to you!!

In case you haven’t guessed it yet, this week marks the first birthday of my blog. I can’t believe it has been a whole year since I started sharing my stories and life with you. With this in mind, I thought this week I would celebrate the journey of my blog by discussing the highs and lows the blog has brought me, my future plans and my most popular and favourite blog posts of the year.

The Highest of Highs and the Lowest of Lows

When I started Me, Myself and Chronic Illness I was in a place in my life, where I had all these churned up emotions about being chronically ill. Thoughts and feelings that would run round and round in my head, and ultimately a feeling of not being understood wherever I went. I started the blog with the intention of sorting out my own thoughts and essentially having my own space to rant, with the hope maybe one or two people would read it along the way.

What actually happened was this and much more. As alongside my own space to organise my thoughts and emotions, I found people were reading what I actually wrote and it has allowed me to grow in confidence with my writing, as well as find that last bit of acceptance of my conditions that I didn’t realise I was still looking for. Don’t get me wrong, I still struggle with the internal battle from time to time, but then I jump on here and things feel that little bit better.

Nevertheless, as with most things in life, when there are highs there are also lows. The main being my need of wanting the blog to grow. Blogging can be addictive at times and the want to share content can be consuming, the down side being to share content and reach more people, you need to promote your blog. Promoting your blog is DIFFICULT, especially when you don’t have the energy to engage in social media, or the know how even. So what does someone like me do? Compare myself to others of course. I see how many followers other bloggers have and how many people read their posts and I berate myself for not being at that level. I then question myself about whether carrying on with the blog is really worth it, when there are so many bloggers out there and I want to give up…

… then I have a better day and think get a grip. Remember your reasons for starting the blog in the first place, it was for me, to have a space of my own and it was to write pieces that resonate with one or two people. Does it really matter how many people are reading this, as long as I am enjoying making the content and the people who read it are?

I do have a long winded answer for this, but in short no, it doesn’t matter not really. Success looks differently to everyone and the second I start comparing to others, the second I start moving away from my success and focus on someone else’s (crap! I started going long winded didn’t I?)

Photo by Polina Tankilevitch on Pexels.com

My Posts

In summary I have written 62 blog posts which have covered everything from symptoms and living with specific conditions to family and work, with a couple of more ‘fun’ posts thrown in the mix.

My most popular posts (based on views)

My favourite posts

  • Symptom of the Week – This isn’t so much one of my favourites, but the symptom of the week section I did took a lot of energy and as a result was a huge relief when I finished it. Saying that I do have a few new symptoms to discuss so watch this space…
  • Hobby Piece – National Gallery of Ireland – I really enjoyed writing a piece based on a passion of mine, and the opportunity to indulge in one of my hobbies.
  • A Poem To Those Who Knew Me Before – As part of World Poetry Day I decided to pen my own poem and was really surprised how much I enjoyed it.
  • Boost Your Self-Esteem Month – Writing pieces about mental health especially those that are tip based is really important to me. It took me a long time as a chronic illness sufferer to realise how important my mental health was, not just my physical.
  • Personal Piece – How I Feel About Possibly Never Having Children – This is probably my most poignant personal piece to date. It felt really therapeutic writing about my fears and hopefully sharing with those who feel the same.

The Future of Me, Myself and Chronic Illness Blog

My goal for the blog was to get it to the year and see where I was at with it. I wanted to see if it was viable to take it more seriously financially (as the eagle eyed amongst you may notice this is on a free site) and how I felt about it mentally.

At this moment in time, I still feel I have a lot more content in me which I would like to share. I am not sure financially if it is viable to move to a paid option (plus I wouldn’t know how), so I may keep this on the back burner for now.

One plan I have is to start a Pinterest account to go along with my Twitter and Facebook, oh and to finally fill out that Contact Me tab.

My next blog post I am going to go into a bit more detail about the structure of my posts going forward, so if you would like to hear more about the type of posts I have planned stay tuned for the next post.

One final note…

Before I go, I wanted to finish off these birthday celebrations by saying a massive thank you to anyone who has followed me or who has ever taken the time to read any of my blog posts, even if it has been one.

Living with any type of chronic illness, energy is limited at the best of times. So to know you have used up some valuable energy to read my musings makes me feel privileged. Your support means the world to me and every like or view you have given has filled my heart and made me feel I have a voice. Because ultimately this is what Me, Myself and Chronic Illness is about: knowing your not alone.

Much love

Sarah xx

Chronic Illness · Guilt · Mental Health · Personal

The Guilt of Having Good Days

The strangest thing happened to me a few weeks ago – I had two days in a row with next to no symptoms, or to be more specific two days of less bothersome symptoms. Two whole days! One after another! I have to confess the days after were pretty horrific, but let’s not focus on those today, instead I want to talk about those good/better days.

I get symptom free days once in a blue moon, and here I had two. I actually couldn’t believe it when it happened, in fact I thought I had filled my symptom diary out wrong, and you know something the overriding emotion I felt was of guilt.

Guilt, not happiness or relief, but guilt. Guilt that my body had allowed me this temporary rest break because chronically ill people are supposed to be ill all the time right? And if I am not then well, maybe I am not as ill as I think I am. Maybe I am faking, and maybe all the people who have ever doubted me are right after all.

As destructive as this way of thinking sounds, this is what having good days does to me. It makes me worry how this comes across to other people and how they may judge me for having this rare treat. I say this because in my experience people who don’t have chronic illness expect someone like me to be ill every minute of every day and when your not, well you can’t be as bad as you make out then.

Sometimes I feel like maybe my illnesses threaten others, or makes them feel embarrassed so maybe they are trying to find something to say to take the edge off. Maybe people just want me to get better, so when they think I am doing ok they interpret it as I am making some miraculous recovery. Whatever the reason, it is unhealthy for me to have taken on those beliefs too.

Photo by Andrea Piacquadio on Pexels.com

The reality is my better days would probably equal some people’s worst, so why do I beat myself up? I beat myself up because society makes me beat myself up, because unless I am looking like I have just rolled out of bed, in baggy old clothes, with big dark eyes then I really can’t stake a claim on illness.

It’s funny really because I wouldn’t ever quiz someone who has been ill or under the weather when they are able to do something, I would just accept it, so why do others feel they have to when it comes to chronic illnesses? In the same vane, you don’t see ‘normal’ employees being made to feel guilty for having their annual leave, yet chronic illness is a full time job, so surely I am entitled to some holiday leave too. I mean they even get days in the week or the weekend off, chronic illness is a year long affair with no bank holidays, birthdays, Christmas, summer holiday breaks booked in.

Jokes aside let me get a bit geeky for a moment, when you really think about it I on average have 2-4 less problematic symptom days a month, never usually consecutive (so this month I was extremely lucky). On average there are 30 days in a month (thank you google!) and 365 days in a year. So, if I use my average of less problematic symptom days that equals 3 days in every 30, or 36 days out of 365 which I would classify as ‘better’ days. 36 days a year wow, that is pretty mind blowing.

The reality is you can’t compare chronically ill lives with those that aren’t, the challenges are different as much as the accomplishments are. By allowing myself to feel guilt over my good days all I am doing is comparing my life to those who are different to mine, and allowing the negative viewpoints to engulf me. Having a good day is something to seize, something to enjoy and something to be proud of. No longer will I be made to feel ashamed because this body is mine and if I have to endure the lows, I am going to make damn sure I embrace the highs too.

Chronic Illness · Parenting · Personal

Personal Piece – How I Feel About Possibly Never Having Children

TW – Please note this post talks about my personal story of not experiencing motherhood. Please refrain from reading if this is a difficult subject for you right now.

I am going to let you into a little secret, I turned 33 in the last week. I can’t believe how much time has raced by, it feels like yesterday when I first entered my 30s. Birthdays in your 30s are funny affairs really because where once upon a time your birthday signified excitement for the future, now they are reminders of another year gone and what I do not have.

I have spoken before on this blog and other publications I have written for, about the fact I still live at home, am unable to work and have no partner. But today I want to talk about the fact I have no children, more than that the possibility of maybe never having children.

First things first this is my experience – this isn’t the golden rule across all people with chronic illness or people with my specific illnesses even. On a similar note there are many people out there who can’t and don’t want children and that is as valid as people who do. This is my personal story, no-one else’s.

It goes without saying there are many ways to have a baby nowadays and there are many children in the world looking for a home, but there are many reasons why a child/children may not be part of my future and they are not all physical. I do have potential issues in relation to my hormones which may mean conceiving will be difficult, but I also have to consider my health in general, oh and my lack of partner which I would need immensely for support. Because rightly or wrongly, whether I gave birth to a child or not, I would need help not only with them, but myself too.

Facing up to the difficulty of motherhood however, doesn’t mean it takes the longing for it away. It doesn’t make it any easier to accept and it doesn’t take away the void of knowing it is potentially another area of my life which I have to lose out on.

Photo by Jens Johnsson on Pexels.com

What makes it so much harder is when you get to this age, everyone you know (and I mean everyone) is also at the stage to be starting families. It actually dawned on me the other day, that every person who I went to school with is either married or has kids, or both. I can’t help, but feel excluded and out the loop because it is yet another element of life I cannot relate to. More than that though it makes me feel envy, not because I am not happy for others, but because it is another reminder of the fact my life is so disconnected to those I knew before. They have the life I may never have, no matter how much I want it. Not being in that position myself quite frankly at times makes me feel like a failure, that I am not living the life I always thought I would ultimately get to.

I always thought when I first became ill in my twenties, that no matter how hard life was then that somehow when I got to this stage in life it would have somehow worked itself out, that I would have found someway to make it work. Yet here I am at 33 still clueless if it will or can work out.

Having my own emotions is one thing, but then you get the opinions and thoughts of everyone else to throw into the mix too, just to make it that tad worse. The pitiful looks and the insinuations that I wouldn’t be able to cope anyway, so why would I be that bothered. Almost like being chronically ill exempts me from the motherhood gene and I should just accept it and move on, all whilst someone else who is dealt a similar blow is smothered in tea and sympathy. The pain is no different, yet somehow when you are someone who is dealt knock after knock, you are expected to stop feeling.

Whilst other people annoy me, it is my body I have the fight with. Feeling it is letting me down yet again, why can’t it just let me be happy for once and experience life in the way somebody my age should? Why should the most natural aspects of life become such a bloody mission? Nevertheless it is sitting here talking to you about the blame I place on my body that I start to think about how much good my body does. Yes it showers me with pain and fatigue and a multitude of other symptoms, and whilst in fact my own body does attack me, it is also battling to keep me going each day. It’s my body that allows me to enjoy the little things in life, that enables me to sit here and write this now, and for that I am grateful.

So, with all this in mind, I often ponder well what am I going to do if having a baby isn’t in my future. I am sure many a self-help guru would suggest reconnecting with myself and find another focus in my life. The only problem being most of what I want to have a focus on, is also off my extremely wobbly table. At this moment in time, I am unsure of what I want in life, what my focus should be, nevertheless I will never give up hope for better times ahead.

I guess I wrote this piece today because I wanted to share my feelings with other people who may be in a similar boat as me. I wanted to share that how you feel is valid regardless of what other people think. That it is ok in life to not be ok, to admit you have worries, and to be open about the fact you have no idea where you are going. More than that – to know that it’s ok to not have all the answers no matter the age you may be.

'Living with' Series · Anxiety · Mental Health · OCD

Living with… Mental Health

We have finally made it to the final instalment of the ‘Living with…’ series – I mean it this time! We have covered Tourette’s, PCOS, UCTD, Fibromyalgia and M.E/CFS, and now we have made it to the mental health section.

First of all I have to say the title of today’s post bothered me somewhat, because technically we all have mental health whether it’s good or bad. So saying living with mental health sounds a bit strange, what I mean by this of course is mental health problems, and for me this is in the form of anxiety and Obsessive Compulsive Disorder (OCD).

So let’s start with anxiety. Anxiety according to the NHS website is a feeling of unease such as worry or fear, that can be mild or severe. I think most people will have experienced anxiety in some capacity in their lives – it is a natural response associated with the fight, flight or freeze reaction. Anxiety becomes a problem however, when it interferes with your daily life.

There are actually many types of anxiety including social anxiety – a fear of social situations/interactions, specific phobias, panic attacks, and generalised anxiety disorder – where you may experience worry most of the time about things going wrong.

Negative symptoms associated with anxiety can include: feeling sick, needing the toilet, racing thoughts, insomnia, excessive sweating, going red, dizziness, shaking and in some severe cases chest pain to name a few.

OCD is also linked with anxiety, yet with OCD you are dealing with obsessive thoughts and compulsive behaviours. So, an obsessive thought will be a thought that can be unwanted or unpleasant that can leave you feeling anxious, uneasy or at times disgust. A compulsion is the act of doing something to take away and relieve the obsessive thought for short periods of time.

E.g. Germs – Obsessive thought – Worried about catching germs and becoming ill – Compulsive behaviour – Excessive hand washing

With the addition of Mental Health

When and how I got diagnosed

I have battled with anxiety since childhood in the form of Social Anxiety, and in my later years I developed Generalised Anxiety Disorder. I have always been someone who struggled with being judged and as a result I couldn’t form strong interactions or bonds with others. Whilst I have improved, I still suffer with anxiety to this day.

My OCD goes hand in hand with my anxiety in general, but I actually developed OCD when I was in my teens and I started seeing the first signs of my Tourette’s. My OCD and Tourette’s bounce off each other making the other that much worse. My OCD has evolved over the years from worrying about germs and things being switched off to fearing the health of others and things happening in an often dramatic fashion.

What I find different with Mental Health problems

The support available – I know there is still a long way to go when it comes to mental health services especially in recent times, but for me I was able to access several avenues when it came to my mental health which I have struggled to do with my physical conditions. I was able to go to support groups, have sessions with healthy minds, be offered medication and speak to a counsellor.

What I wish people knew about Mental Health problems

In terms of anxiety I wish people knew you can’t just snap out of it or pull yourself together, just because the situation doesn’t make them personally anxious. Pushing people isn’t helpful to the anxious person and in some cases can make you feel worse.

In terms of OCD, a lot of people will claim they are ‘so OCD’ because they like to be clean or because they make lists, and use it in a jokey manner. True OCD is these things to an extreme which can impact your daily life immensely. I wish people knew how much throw away comments can hurt people experiencing these things for real.

The most difficult things about living with Mental Health problems

The intrusive thoughts and doubts can have a negative impact on my other conditions. Especially when I have to deal with a dismissive doctor who tries to downplay my symptoms – my anxiety can allow their negative feedback to make me question myself.

Also the repetitive nature of OCD when it flares can increase the discomfort of my Tourette’s, therefore causing a issue for not just my mental, but physical state too.

What has having Mental Health problems taught me ?

I actually think having problems with mental health is what has taught me to understand mental health in it’s full glory. I am able to be more compassionate, open, sympathetic and thoughtful to not only myself, but to others too.

It has also taught me about me, and now that I am in my 30s I am more in tune with my thoughts and body then I think I would have ever been without my struggles. Understanding my mental health has allowed me to put my physical health first and start to look after all of me, not just parts.

For more information on OCD you can read my symptom of the week post here.

Here we have it, we have come to the end of the ‘Living with…’ series. I hope you have found it helpful learning about how I live with my various conditions. Until next time xx

Activities · Chronic Illness · Hobbies · Poetry

A Poem To Those Who Knew Me Before

I have come slightly late to the party, but the 21st of March was World Poetry Day.

Poetry can be a great tool for many people to express themselves, and as a lover of the written word I can see why. Not only that, poetry can help you release your creativity, send powerful messages that you may otherwise find difficult to say, and allow you to enter a zone of mindfulness where you focus your attention on one thing. All of which are great aids for people with chronic illness.

So, with this in mind I thought I would try my hand at a spot of poetry myself to celebrate (a rather belated) World Poetry Day.

I am going to put it out there straight away – I am no poet and I admire anyone who makes this seem easy because it really wasn’t. Even so I hope you enjoy xx

Photo by Suzy Hazelwood on Pexels.com

My poem is: To Those Who Knew Me Before.

You say I am not ill

Although I know I am

You say it’s in my head

Like it’s all one big scam


You are free, You can live

You don’t have to worry

I am forever changed

With this beast inside my body


Things have changed between us

no-one is to blame

We are on different paths

Nothing stays the same


You don’t get to judge me

Because you do not understand

This is chronic illness

This was never in my plan


Life is for me now

At a slower pace

With some days only managing

To just about wash my face


I am me, but I am not

A contradiction it may seem

I wish I could explain it

I wish it was a dream


I hope one day it changes

I hope one day I’m free

But even if it does

The scars of chronic illness will forever impact me