Techniques to Use at Work

8th Oct 202027th Nov 2020 memyselfandchronicillness1 Comment

Following on from my previous blog post on Work and Chronic Illness – if you missed it you can find it here – today I am going to talk about the different techniques you can use at work if indeed you have to.

During my time at work I tried to come up with a few techniques to combat some of my symptoms which if you are in position where work is your only option you may (or may not!) find useful. Remember this will be determined by the type of work you do and the type of condition you have, so you may need to make your own adjustments based on your actual job role and health.

Muscle pain – If you suffer with muscle pain try to do some mindful stretching to stretch out achy muscles – depending on your work environment you may find you need to nip out to the toilet so it doesn’t look like you are auditioning for a fitness DVD

If you are sat down at work make sure you take up the opportunity to undertake a workstation assessment. This will help to provide you with the right type of chair, foot rest, technology and work space for your individual needs

To combat fatigue and headaches make sure you drink plenty of water and have regular snacks. This will also help keep your blood sugar steady if you suffer with dizziness

Go to bed the same time every night to let your body get into a routine

Make sure you take your full entitled break – In society nowadays we are expected to work like machines due to staff shortages and tighter deadlines and as a result feel railroaded into taking shorter breaks or in some cases missing breaks altogether. Under no circumstances allow yourself to do this as you will only pay for it later. Take your full break, get out in the fresh air and away from your work environment, eat and drink to refuel and try to switch your brain off in that short space of time

Make sure you take all medications and aids with you to work and set reminders for any medications you need to take throughout the day

If you are working in an office environment and are light sensitive then adjust the brightness on the computer screen and use coloured screen paper when reading documents

Practise deep breathing in stressful situations

Pace your activities if possible by changing between physical and mental tasks. If you have spoken to your manager about your condition/s then you could explain the importance of pacing to them so depending on your job role they could alter your tasks.

Develop a strong work life balance by not letting work become your life otherwise your home life will be the area affected

When you leave work each day switch your work brain off and shove it in a drawer – easier said than done right! The reality is though there is no point worrying about things you have/haven’t done when at home because you can’t do anything about it until your back at work – you’re wasting valuable energy. Wasted energy that will only impact your home life which is really not what you need

Speak up when things are getting tough – do not suffer in silence

Realise that if things are getting too much having time away from work isn’t a weakness. If you need to be signed off regardless of how long that is for it is probably the best thing for you at that time. Chronic illness is hard work and working with one is even harder so give yourself a break and hold up on the guilt.

Consider a career change – It sounds so easy when people say it, but not everybody is able to just give up their current job and take a chance on something completely different, but if you are struggling in your current role it doesn’t hurt to brainstorm what you would like to do instead and investigate your options. – I will be looking at doing a piece on career changes in the future so keep your eyes peeled.

The reality is working with chronic illness is difficult and there is no quick fix that will take the difficulty away, but I hope you find my suggestions helpful. The most important thing is to look after yourself and know you can only do your best, and that is all that really counts.

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

Symptom of the Week – Overview

2nd Oct 2020 memyselfandchronicillness2 Comments

So for anyone who reads my blog regularly or dip in from time to time you will know I have been doing a symptom of the week segment for some time now. In fact I have just counted and it has been 17 weeks!

I thought I would give a round-up of the symptoms covered and which conditions they fall into. PLEASE NOTE not all people experience all symptoms and some people may find they are not relevant to their conditions at all. Remember we are all different and therefore experience different things. To view any of the symptoms click on the links below.

Symptoms associated with all my conditions: Although they are predominately associated with Fibromyalgia, ME/CFS, Undifferentiated Connective Tissue Disease (UTCD), they also help with my other conditions of Polycystic Ovary Syndrome (PCOS), Tourette Syndrome and Mental Health too.

Symptoms associated specifically with PCOS:

Symptoms associated specifically with Tourette Syndrome:

Symptoms associated specifically with Mental Health:

I myself still have other symptoms which I haven’t covered above including light/noise sensitivity and ulcers among many others- if people would find this helpful please let me know and I would be happy to create those pages too.

Equally if there are symptoms I haven’t mentioned which you would like me to add just let me know either in the comments section or on social media. x

Chronic Fatigue Syndrome · Chronic Illness · Fibromyalgia · ME/CFS · UCTD

I’m not Lazy, I’m Fatigued

29th Sep 202028th Sep 2020 memyselfandchronicillness8 Comments

Without a shadow of a doubt one of the worst symptoms of chronic illness is fatigue. Fatigue is an almost indescribable feeling that only people who experience it can truly understand. A lot of people will describe fatigue as being tired, but it is way more than that. It is a feeling of exhaustion that affects you both physically and mentally, a feeling that almost zaps the life out of you and alters your ability to complete simple everyday tasks.

Fatigue is heavily linked with tiredness, so a lot of people who don’t have illness will often describe their tiredness as fatigue. Whilst you can’t dispute they are experiencing fatigue it is more than likely what they are really experiencing is tiredness.

With that said because people link fatigue with tiredness, in the same way they think they are experiencing fatigue when they are not, healthy people will assume that the fatigue felt by chronic illness sufferers is like their own – tiredness. Therefore their ability to sympathise becomes difficult because they are able to carry on when they are tired – so why cant you?

Maybe you are putting it on, maybe you are weaker, or maybe you are just downright lazy they think. Better still maybe (and this is the chronic illness favourite) it is just all in your head.

The truth is I am, you are, we are all battling every day. Fatigue is more than being tired; it drains you, consumes you and steals your life. Obviously I want to live like people around me and be able to go out, do housework and even cook my own food, why would I want to watch my life pass me if I didn’t need to, who would choose a life of constant battle when they could be loving life.

A life of fatigue is like having a strict schoolmaster ruling over you, dictating everything you do. You cant control it, if today is the day it wants to strike then you don’t get much of a say. It even punishes you on the times you do manage to do something ‘normal’ by rearing its ferocious head for days on end after. It causes so much aggro, yet this is still only one of the symptoms of chronic illness, this is only part of the whole picture.

There is no apparent cure for fatigue, but like with most symptoms of chronic illness there are ways to try and manage it, and of course there is no one solution that fits all. Nevertheless my top tips for fatigue are as follows:

Establish a bedtime routine and practise good sleep hygiene – You have probably heard of sleep hygiene before, but probably the oddest thing about fatigue is the fact that whilst you are exhausted, sleep can be quite difficult. Therefore try using ear plugs or eye masks if you find noise and light a disturbance, try getting up at the same time everyday regardless of your lack of sleep to get your body into a rhythm, avoid big meals too near to your bedtime so it doesn’t lay heavy on your stomach, make your bedroom a relaxing sleep area by decorating it in relaxing tones, using dark curtains, moving your clock so you don’t clock watch and assess the temperature of the room to suit your needs.

Introduce relaxation periods – Make sure everyday includes a segment that is just yours to truly relax. This doesn’t mean having to go to a spa and have a pamper session (we should be so lucky), but by taking time to step out from the stressors of the day. The best way of doing this is through mindfulness and meditation focusing on your breathing and shutting out external thoughts. Check out my article on how to manage stress levels at home to get some ideas here.

Learn to pace – The most important thing EVER! For those who don’t know pacing is a technique that teaches you how to manage your energy levels without burnout. It consists of rest periods throughout the day and is a technique used to balance activity periods (which can be emotional, mental or physical) alongside relaxation ones. There is no doubt pacing is hard and takes a lot of practise. For specific help with pacing check out my pacing article here.

Stop listening to others – It is extremely hard not to let other people’s opinions get to you but you need to try. The reality is people cant truly understand what it is like to be you because they aren’t you, in the same way you cant understand what it is like to be them. Replace listening to other people’s negative opinions and start listening to your own body and what it needs.

In conclusion, fatigue is a tricky beast to tame and is one of the most difficult symptoms of chronic illness. It is not just a case of feeling tired; it is much more than that. Whilst there are techniques you can use to manage your exhaustion, there is currently no cure. So remember you are not weak, putting it on or lazy – you are fatigued (the real kind).

Anxiety · Chronic Illness · Mental Health · OCD · Symptoms · Tourette Syndrome

Symptom of the Week – Obsessions and Compulsions

24th Sep 2020 memyselfandchronicillness2 Comments

This week is not so much symptom of the week, but condition of the week as OCD is a condition in itself.

Obsessive Compulsive Disorder (OCD) is a mental health disorder which many people have as a stand alone condition or alongside other conditions e.g. Tourette Syndrome. In a nutshell OCD is when a person lives in a vicious cycle of getting obsessive thoughts which cause anxiety that leads them to perform compulsive behaviour for short term relief.

For example a person may have obsessive thoughts about contamination which cause them anxiety so they compulsively and repetitively wash and clean to take away those intrusive thoughts. Another example is having obsessive thoughts that make you believe your actions may leave yourself or other people at risk causing you anxiety, so this leads to compulsive behaviour in the form of checking to make sure things are turned off and/or doors are locked.

My experience

For me OCD is a result of two things: my anxiety issues and my Tourette’s. In terms of anxiety I find being an anxious person I worry about a lot of things from worrying about germs to how my actions may affect someone else. Through the years I have built many compulsive behaviours to combat my obsessive thoughts. However this side of my OCD has improved in recent times and whilst I still do compulsive behaviours from time to time, (disinfecting anything in sight or getting out of bed repetitively to check things are turned off), the majority of my OCD now sits with my Tourette’s. My ticking goes hand in hand with my checking of lists and I tic whilst I check and need to tic if I don’t check – I can’t win!

My top tips for Obsessions and Compulsions – as always please check with your doctor/specialist before trying any new tips/ideas.

Refocus your mind – I know this is really hard when you are in the mist of a obsessive/compulsion cycle, but try to engage your mind on something else. Be it an activity or a happy memory try to distract yourself and move away from your obsessive thoughts.

Ask your doctor about CBT – CBT Cognitive Behavioural Therapy is a psychological therapy which focuses on the here and now. It teaches you how your thoughts have an impact on not only your emotions, but your behaviours too. Many GP surgeries now provide CBT or can inform you of courses in your area.

Speak to a counsellor – If you believe your OCD stems from a particular reason you may find a series of counselling sessions may help. Getting to the root of your problems may help not only your OCD, but your mental health in general. You can access counselling in a variety of different ways nowadays including face to face, telephone and video calling.

Get in touch with support groups – Joining a support group or accessing online information will help you to feel that you are not alone. Dealing with obsessive, intrusive thoughts can make you feel very lonely so seeing and hearing about other people’s experiences can help. Charities such as OCD-UK, Rethink and Mind are a great starting tool. To here about my own experiences you can read my article on my anxiety episode with germs here .

Build up your self-esteem and trust yourself – I find with my OCD a lot of the time I am looking for reassurance from others because I don’t trust my own instincts and therefore my own self. Realising you are capable of things and you can trust yourself as much as anyone else if not more will aid in your quest to combating your obsessions and compulsions.

Tourette’s related OCD

If you find your OCD is significantly related to your tics then you may find seeking help for your Tourette’s is more appropriate. You can find out more information on tics in my last post here . You can also find details of charities that may be able to help you further.

Chronic Illness · Symptoms · Tourette Syndrome

Symptom of the Week – Tics

19th Sep 2020 memyselfandchronicillness2 Comments

So this week is dedicated to my fellow tickers of the Tourette’s variety. According to the NHS website tics are involuntary sounds or movements. Tics can be sudden and difficult to control and usually start in childhood. For some people tics may disappear in adulthood however a significant number of people may find tics continue into adulthood with them.

Examples of physical tics can include: jumping, grimacing, eye rolling, jerking and blinking amongst other things. Whereas examples of vocal tics can include: whistling, coughing, animal sounds, grunting and tongue clicking. However there are an abundance of different tics depending on the individual.

For anyone learning about Tourette’s and tics for the first time it is important to know that not all people with tics swear! In fact people who experience swearing also known as Coprolalia are less common than people who don’t.

My experience

I am what I would call a motor ticker meaning my tics are physical and in my movements rather than verbal. I was diagnosed when I was about 18 which tends to be quite late after spending years being told I was epileptic. I am able to control my tics in public which I know some people are unable to do, but I suffer for this when at home as I have to release the build-up once I am back. This obviously causes havoc with my ME/CFS and Fibromyalgia as my muscles stiffen up when I tic.

My tics have evolved over the years although my current bundle include pacing whilst kicking out legs and arms, facial grimacing and holding my arms and hands stiff.

My top tips for tics – as always please check with your doctor/specialist before trying any new tips/ideas.

Manage stress levels – Stress and anxiety can make you need to tic worse. Try to identify any stressful triggers in your life and look at ways to overcome them. You can read my previous articles on modern day stress here and managing stress at home here for more tips.

Get good restful sleep – As with stress tiredness can elevate your ticking. Practice good sleep hygiene and make sure you get enough sleep and rest each night. For more information on good sleep hygiene you can read my article I’m not Lazy, I’m Fatigued here.

Find engaging activities – I have to admit I do struggle with this particular point because I find I need to tic in intense happiness as well as intense stress. However they do say focusing your mind on an activity can help your tics to subside. Consider activities such as puzzle books, craftwork and reading.

Find support through charities – A great tool to feel connected to others with tics and know you are not alone is to look on the websites of Tourette’s charities such as Tourettes Action based in the UK and The Tourette Organisation of America. These websites hold an array of information including information on symptoms, information for professionals and support groups. They can also give you more information on behavioural therapies that you may find of use.

Consider a medical card/bracelet – If your tics are severe you may want to consider carrying a medical card or wearing a medical bracelet. That way if you are in certain situations were your tics arise you can show the card/bracelet to others to show them they are a result of Tourette’s.

Embrace your tics – Whilst you can find ways to hide your tics and in some scenarios you may find this beneficial, I also think it is important to embrace them too. Tics don’t define you, but they are a part of you and you should never feel ashamed of who you are. Educate others by talking about your tics because the more people understand the real world of Tourette’s the more comfortable you will feel.

Next week’s symptom: OCD

Chronic Illness · Fibromyalgia · ME/CFS · Tips · UCTD

Work and Chronic Illness

15th Sep 202027th Nov 2020 memyselfandchronicillness2 Comments

Life in the workplace can be difficult at the best of times, but what if you are in the mist of your career and you are struck with chronic illness? How do you navigate being uncontrollably ill whilst being expected to keep up with your responsibilities in your job role? Today I would like to share with you my experience of becoming ill in the workplace.

My workplace experiences

My own personal experience begins with leaving university with a degree in Psychology and believing I could do whatever I wanted. Before realising I was ill I did a number of different jobs during my time at uni including waitressing and retail work, not understanding why doing a four hour shift was killing me. After uni I moved into a admin position which led me into the corporate world working in a HR department. I was earning good money working five days a week on full time hours, and at the age of 25 feeling I was around 80. Whilst my colleagues worked a full week and had hobbies in the evenings and then busy weekends I would get home and collapse on the sofa just about managing to have food, (prepared by someone else), before falling asleep. My weekends were a blur of sleep and pain not being able to leave the house because I needed so much rest. Going back to work on a Monday morning was always a struggle as I felt the weekend hadn’t been long enough, and having to hear everyone else’s tales of great weekend adventures was simply depressing. Yet the more tired I got the more I pushed myself not realising at the time I was doing myself more harm than good. My ME/CFS and Fibromyalgia conditions had developed and were in their full glory with every working day a battle with feelings of pain, tiredness, sickness and dizziness just to name a few. Needless to say this was exacerbated by the stressful working environment I was in.

My never-ending ill health led me to having multiple absences from work with each absence lasting months at a time as my body struggled to function. Each time I returned to work I was ushered into a disciplinary meeting whereby I would be read the riot act about absence. Each time I listened and apologised even for being ill, and each time they would tell me they would ease my workload in order to support me and all I had to do was speak up when things were getting too much. So I did just that I spoke up when my symptoms were getting too much, but unfortunately my concerns were ignored. As a result my conditions would take over and I would be signed off work again.

After five years of working like this I made the decision to leave my job as my body and mind were no longer mine to control. I did not return to the working world for 18 months in my quest to get ‘better’. I chose to go back to work after 18 months as I felt I was ready to try again, but this time on part time hours. I lasted 8 months during which I had another extended absence and once again had to walk away. The people I worked with were lovely, but once again my individual needs were not conducive to the environment I was working in.

It was after leaving that job I realised that chronic illness is something I will always have to consider in my working life and finding an employer who understands that will be vital in me trying to keep as healthy as possible. An employer who doesn’t just say they understand disability in order to tick the equality acts box, but an employer who truly listens and acts on what they hear.

The reality of ME/CFS in the workplace

It is wrong to assume every person with a chronic illness cannot work, but for ME/CFS sufferers in particular the whole concept of holding down a job is a job in itself. People assume it is the work itself that causes problems which of course it does, but so do all the elements around holding down a job. From being able to get up early in the morning, losing an established health routine, to the commute into the workplace and the interaction with other people – the whole day can be filled with challenges.

Whilst employers are becoming more aware of the importance of equality in the workplace in the form of disability, there is still one area of disability that many employers are not exploring which is that of the chronic illness employee.

I don’t blame employers for not understanding how to support chronic illness employees in the workplace. I don’t understand it myself either half the time. Living with chronic illness and in particular living with ME/CFS is unpredictable at the best of times and makes planning a normal working week next to impossible. That’s why reasonable adjustments and flexible working are so important when it comes to chronic illness.

Flexible working can range from altering start and finish times, the number of hours you work and probably the most vital tool for people with ME/CFS the ability to work from home.

But what if you don’t have that option and you have to physically go to work? Whilst it would be lovely to sit here and say don’t go to work if you can’t the reality is that isn’t practical for some people no matter how much you want it to be. Whilst I am not working at this moment in time due to my illnesses there have been times when I haven’t had a choice due to finances but go to a workplace, and I know there are many people who are in the same boat.

My top three tips for supporting yourself in the workplace (if indeed you can make it there)

Be honest with your employer – This has always been something I have struggled with since becoming ill – when and if to tell an employer. Should you tell them on the application form? At an interview? Or three months in when you are having an unbearable flare up? The truth is the choice is entirely yours, but being honest with your employer isn’t something you should shy away from. The more honest you are the more you can communicate your needs. Sell your skills as well as your limitations and show that there is more to you than being an illness. This way it is a two way street of what you can give them as well as what you need them to give you. If you become ill whilst in work then you should make your employer aware sooner rather than later to ensure you are given the support you need as soon as possible.

Read up on your company’s disability policies – All companies should have policy and procedures which should include a disability section. Read it or get someone you trust to read it and familiarise yourself with it so you know your rights within the workplace. Find out about policies regarding flexible working and highlight any areas relevant to you. Once you feel you are prepared request a meeting with your manager, (taking in a witness if needed to help you record notes). Discuss what reasonable adjustments you are entitled to showing them the policies you have read.

Contact HR – If like I did you found your manager isn’t listening or keeps delaying any support you are entitled to contact your HR department. As a disabled employee you are entitled to reasonable adjustments including occupational health assessments and your HR department will know this. Remember to keep detailed correspondence between yourself and anyone you speak to not only to act as a reminder, but to keep as evidence for future reference.

So here you have it my experience of becoming ill in the workplace. There is no doubt working with chronic illnesses is a tricky affair, but so is living with them. The important thing to know is all workplaces are different and they offer different experiences, but that doesn’t stop you exerting your rights. Don’t pressurise yourself to work if you are not in a place to do so, but equally if are able, (or have no choice), speak out about your needs. You are no less worthy of your role than the person next to you, illness or no illness.

If the topic of working is of particular interest to you keep an eye out for my upcoming posts on benefits, employment (with more specific tips in the workplace) and career changes.

Update: You can now read my workplace tips post here

Chronic Illness · PCOS · Symptoms

Symptom of the Week – Unwanted/Excessive Hair Growth

11th Sep 2020 memyselfandchronicillness2 Comments

We are on week two of PCOS Awareness month so today is another symptom related to PCOS: Unwanted/Excessive Hair Growth.

Hair growth is natural we all have it somewhere on our bodies at some point in our lives, but for PCOS sufferers this can be more than the average person. Excessive hair growth also known as hirsutism is often dark and thick and can appear anywhere on your body. The most common areas for this to occur are your face, neck, upper lip, chest, thighs, tummy, bum and/or lower back.

My experience

For a long time I hid my hair growth from anyone even my doctor because I found it so embarrassing, but then I realised I needed to be honest in order to get help with my diagnosis and other symptoms. Whilst I suffer from hirsutism in a certain area I also find that my ‘normal’ areas of hair growth grow back rather quickly. I can shave my legs one day and two days later it is visibly growing back. I guess that is one plus point for the colder weather – I get to cover up more and not have to keep thinking about any unwanted hairs showing!

My top tips for unwanted/excessive hair growth – As always please check with your doctor/specialist before trying any new tips or ideas.

Identify your hair removal technique – There are so many ways nowadays to remove your hair – it’s just finding what suits you best. You need to ask yourself what’s important to you; do you want to do it yourself or go see a professional? Do you want something that is fairly straightforward, but may mean having to do it quite regularly or do you want something more fiddly in the short term, but may have longer results? You also need to consider where on your body you need to remove the hair and which technique would work best. The techniques you can explore include waxing, shaving, hair removal creams and plucking.

Decide if hair removal is what you want – Not everybody wants to remove their hair perhaps because they have to do it so often or because actually they don’t see it as a big enough issue. If this is the case you may consider bleaching techniques instead to lighten the hair. I have no experience of bleaching so you will need to do your own research if bleaching is something you want to explore.

Speak to your doctor/pharmacist about specific areas – If you have hirsutism in certain areas your doctor may be able to prescribe you creams which can help with the speed of your hair growth. Doctors can also discuss with you contraception options to help with your hormones based on your individual circumstances.

Review your lifestyle – People with PCOS tend to have higher androgen levels which can cause some of the horrible symptoms of PCOS. If you are overweight loosing just a slight bit of weight, (in the healthy way), can help to decrease your androgen levels and help with your unwanted hair.

Accept yourself for who you are – This is probably the most important tip of all, yet the hardest to master. Hair growth can be an embarrassing symptom, but once you accept it for what it is – a symptom of your condition – then you can start to take control on how it makes you feel. Feeling better in yourself mentally will help you deal with your body physically.

In conclusion, there is no rule book saying how you should deal with hair growth and it is up to you what you do about it. Whether you remove it, lighten it, keep it and embrace it; the choice is yours.

Next week is dedicated to my fellow tickers. I am talking Tourette Syndrome and next week’s symptom of the week is: Tics

Activities · Books · Chronic Illness

Read a Book Day

7th Sep 202027th Nov 2020 memyselfandchronicillnessLeave a comment

Yesterday was Read a Book Day so technically I am late, but that’s living with chronic illnesses for you they don’t make planning easy!

Rather than talk about a self help book or a book about one of my conditions I wanted to share with you some books/authors that I absolutely love to read to escape my days of chronic symptoms.

Reading with chronic illness is difficult at the best of times especially when you experience fatigue; the book can be difficult to hold, the page can be hard to focus on, the fatigued invaded area which is normally your brain cannot take in a word that is being read, but on your good days reading can be magical. The key is to remember that reading isn’t a race and it doesn’t matter how long it takes. There have been times when it has taken me months to get through one book, but it was always worth it in the end.

I have mentioned in a previous blog post that there are ways of interacting with a book even if you can’t read it yourself such as getting someone to read to you, or listening to an audio book. You can also access books from your local library under the Quick Reads initiative which are much shorter than normal novels. My message being that nobody should ever have to miss out on the beauty of a good book.

My favourite books/authors:

Escape – C.L. Taylor

If you love psychological thrillers then C.L. Taylor is the author for you. Every book I have ever read by this author has been amazing so it was hard to pick a particular book. Escape is a psychological thriller with a difference. With never-ending twists and turns the reader finds themselves questioning characters up until the final chapter of the book. The family dynamics within the story were interesting to explore through the generations and I particularly loved the nods to the Irish culture – this is a definite must read.

I would also strongly recommend Sleep if you like a whodunit vibe. My next book on the list to read is Fear which is ready for me to start when I have the energy.

The Little Shop of Happy Ever After – Jenny Colgan

Another of my favourite authors is Jenny Colgan. Jenny’s books are the epitome of escapism which inspire hope for the future and as a chronic illness spoonie that is just what I need. Again it is incredibly difficult to pick a book as they are all so good, but I found the Little Shop of Happy Ever After particularly resonates with me. This speaks to anybody who would love to start again specifically anybody who would like to start again who truly understands the beauty of books. Another highlight in this book is the Scottish highlands setting and the people who live there.

I would also strongly recommend the Little Beach Street Bakery series which includes a summer and Christmas follow-up.

New Beginnings at Rose Cottage – Erin Green

New Beginnings at Rose Cottage is one of my all time favourite books. Firstly because it is set in beautiful Devon, secondly because I find the characters so relatable and thirdly because it offers hope for the future. Being chronically ill I often feel trapped by my situation and wish I could start again and this book inspires me to believe this is possible – in my head at least and to me that is what a great book should do. It should allow you to escape in your head even for a short while and allow to think of something else other than being ill.

So here you have it – it may be a little late, but these are favourite books and authors for Read a Book Day. What are yours?

'Living with' Series · Chronic Illness · PCOS

Living with… PCOS

4th Sep 20202nd Apr 2021 memyselfandchronicillness6 Comments

September is PCOS Awareness Month, so today I would like to share with you my experience of living with PCOS. This is also the second instalment of my ‘Living with…’ series – to view the first instalment about Living with Tourette’s click here.

I was diagnosed with PCOS around 18 months ago when I found that a bunch of my symptoms didn’t fit in with the stereotypical symptoms of my other chronic illnesses. As with all of my chronic illnesses I had to fight to get a diagnosis, with many doctors saying my symptoms were normal or just part and parcel of my other conditions. Nevertheless I knew they wrong and this eventually came to light.

My Symptoms

It is hard to say when my symptoms started, but they consist of hot flushes, hirsutism (excessive hair growth), oily skin/acne and changes to my periods. Of course fatigue and dizziness also play a role, but as they also play a role in my other conditions it can be quite hard to decipher where it’s stemming from at times. I probably started noticing my symptoms when as an extremely cold person even in the warmer months I started noticing the smallest activity left me drenching in sweat. Even going for a short walk outside at a snail’s pace I would get back home and find my back and chest dripping wet like I had just stepped out of a swimming pool. I also started getting drenching night sweats that I had to be seen at the hospital for because it was deemed a worrying symptom that was quickly ruled out for anything suspicious. I had noticed abnormal hair growth in certain parts of my body for a while, but never told anyone out of embarrassment and suddenly the skin on my chest and back started becoming extremely oily and spotty something I had never experienced as a teen. Whilst these symptoms occurred it was probably the change to my weight and periods that made me more aware of the changes to my body.

Weight Worries and Period Problems

At 5’4 I have always had a fairly small frame and my weight had never really been an issue throughout my life except for once or twice and even then I knew of the reasons why. Yet around two years ago I started gaining weight at a fairly gradual speed that I never even noticed it had happened. That was until one day I looked in the mirror and my normal knee length skirt was now sitting on me like a mini skirt because my stomach and hips had made it ride up so much. I looked bigger in my body, but also in my face and I didn’t recognise myself. Whilst I didn’t like how I looked it was the way I felt that affected me the most. I was sluggish and the way I moved felt slow and laboured – an effort that had nothing to do with my chronic fatigue; it was my weight gain. Taking the plunge I weighed myself for the first time in years and found I was clinically overweight something I hadn’t been for a long time if ever. I couldn’t understand what caused my weight gain – sure I probably was eating more than normal, but not at the quantities I would have to have been to gain the amount of weight I had in the timescale.

Then there were my periods. My periods have always been regular as clockwork middle of the road affairs. With them lasting the amount of days at the same severity each month until the last few years. Many people with PCOS have irregular periods or no periods at all, but I am one of the few that still have monthly periods although for how long I cannot be sure. My periods have changed so dramatically that they are barely there and I am scared they will stop before long, but only time will tell.

My diagnosis

Having all these symptoms and having them dismissed by doctors who clearly thought I had enough ‘illnesses’ as it is, I struck lucky one day with a new doctor. I decided to tell her of my bothersome symptoms and she mentioned the idea of me having polycystic ovaries for the first time. She initially referred me to the hospital to have a scan which was denied, and after much toing and froing with the doctors’ surgery I had another doctor go through previous blood work I had done which were abnormal alongside my symptoms to receive the diagnosis of PCOS.

As with all my chronic conditions my doctors told me there was no treatment or cure for PCOS and it was something I had to learn to live with. The only way I started to truly understand what having PCOS meant was by doing my own research and reading information from charities such as Verity which helped me to understand my symptoms better.

The only advice I was ever given by my doctors was to lose weight which I am proud to say I did. In total I have managed to lose three stone and am back to to a healthy weight for my height although it is a constant battle to keep it stable.

Going Forward

My biggest fear with PCOS is fertility. As I mentioned my periods have changed, but whilst I am still menstruating every month my fertility won’t be checked. Having PCOS by no means translates as not being able to conceive because lots of women do, but personally for me it may not help matters. I have other health issues which have potentially raised fertility as a concern and I can only hope everything will work out in the end.

You can’t see PCOS and like most chronic illness it is invisible to others, but for sufferers it can be a daily struggle. Spread the word and talk about PCOS alongside all other conditions because the more people talk about it the more people will understand it. I certainly didn’t know much about it until I found out I had it.

My message to other PCOS sufferers out there is that whilst PCOS has its challenges it doesn’t have your life and it definitely doesn’t define who you are. Remember you have Power, Courage, Optimism and Strength – you are a PCOS Warrior.

More instalments in the series are now available – click the condition to find out more: UCTD, Fibromyalgia, M.E/CFS and Mental Health.

Chronic Illness · PCOS · Symptoms

Symptom of the Week – Oily Skin/Acne

2nd Sep 2020 memyselfandchronicillness2 Comments

Oily skin and acne are both symptoms which can be seen with the condition PCOS. This is because the condition can see an increase in certain hormones which can lead to a increase in sebum production resulting in oily skin and in some cases acne. Whilst oily skin and acne can appear anywhere on your body most women will notice outbreaks mainly on their face, chest and back.

My experience

Being a teenager who never had any major problems with my skin, it was a shock to notice my skin change in my late twenties. Certain areas of my skin are extremely dry due to certain conditions I have whilst my forehead, back and chest are oily thanks to PCOS. As a result the skin on my upper back and chest can get spotty and irritated which gets worse depending on the time of the month and in times of stress.

Photo by Andrea Piacquadio on Pexels.com

My top tips for oily skin/acne – as always please check with your doctor/specialist before trying any new ideas or tips.

Speak to your doctor/pharmacist – The first thing I would strongly recommend is speaking to your doctor or pharmacist about your specific skin problems. Remember to inform them of your PCOS so they will take notice this is an ongoing problem rather than a one off event. Depending on the severity of your skin problems they may be able to recommend specific products you can use as well as talk to you about specific hormonal treatments you can try.

Review your washing technique – Whilst it is important to wash your effected areas it is important to not over wash them. This is because if you have acne over washing (more than twice a day) can irritate your skin and start to make your skin dry. Using water that is too hot or too cold can also affect your skin, so try going down the middle and use lukewarm water.

Check your beauty products – Look through any beauty or makeup products you use and the ingredients in them. This is because some products can actually make the oil in your skin worse. Finding the right beauty products for you may be a case of trial and error and will be very dependent on your personal skin type. In terms of makeup I personally find powder based products better than liquid as they tend to last longer and diminish the oily look of my skin. You could also look for products which are non-comedogenic as they are less likely to block your pores.

Review your make-up – Another quick note about makeup is to make sure you remove all makeup before going to bed each night to avoid pore blocking. Also review how much makeup you are wearing because whilst your go to may be to cover up your affected areas it is also important to let your skin breathe.

Carry blotting papers – You can purchase blotting papers from most beauty retail shops which can be useful when out and about and your having an oily skin moment. Whilst these aren’t designed for regular use they can help on occasions to eliminate shine and absorb any troublesome oily patches.

Drink more water – Whether this helps with PCOS related skin issues is anyone’s guess, but drinking more water does help with your skin in general so it is definitely a help rather than a hinderance.

Look at your stress levels – As with most symptoms connected with chronic illness stress can play a big role in making them worse. For more tips regarding stress you can read my previous articles on modern day stress here and managing stress at home here.

Carrying on PCOS month next week’s symptom will be: Unwanted/Excessive Hair Growth