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

Awareness · Chronic Illness · Fibromyalgia · Gaslighting · Invisible Disability · ME/CFS · Tourette Syndrome

Invisible Disabilities – Why Won’t You Believe Me?

21st Oct 2021 memyselfandchronicillness3 Comments

This week is invisible disabilities week (17th -23rd October), so you guessed it – today I am talking about living with invisible disabilities.

Rather than talk about what constitutes as an invisible illness or disability, today I want to share with you a previous experience I had during my time living with invisible disabilities. This example is from many years ago when I was able to work and socialise – this is no longer the case as my conditions have developed since then, and I now have additional diagnoses and symptoms. Please note the disabilities I am referring to are Fibromyalgia, ME and Tourette Syndrome.

I check the clock again, oh crap it is 30 minutes later to the last time I checked – I must have fallen back to sleep – I am exhausted, my body feels like I am lugging another body around as well as my own, maybe another two bodies even. I am so late.

I get to the bus stop and can see there are no available seats in the bus shelter. They have all been taken. My body is struggling today already, I really could do with sitting down, but the seats are taken with people messing around, or on their mobile phones oblivious to the pain I am in. I hover around until I have no option, but to lean against a wall and silently deal with the pain.

Great, there are no seats on the bus apart from the side seats, the ones reserved for the elderly, those with mobility aids or with pushchairs. I hate sitting in them a) because the seats are too hard for my aches and pains and b) I can sense people judge. Today I sit there, I don’t have the energy to stand. I survive about 3 stops and then typical here comes a pushchair – a double buggy at that. I can sense people’s eyes on me and feel obligated to move. I find myself in the aisle of the bus along with other non-seat finders, a few who are noticeably older than me. People offer them seats and they accept. I am the only one left standing, no-body cares.

I’ve finally made it into work and to my desk. I feel relieved to be able to sit down without barriers. Today I have a lot of work to do and a lot of chattering workmates who don’t seem to know what volume control is. The sound is penetrating my ears making it difficult to concentrate, then a young woman in my team decides to spray some deodorant telling everyone she wants to smell nice. The smell invades my nose, eyes and throat, so I cannot breathe properly. When I mention it to my colleague it is brushed off under the carpet like I am exaggerating. The noise of the others is my team is getting louder, I ask my manager if I can move seats to a quieter spot and he looks at me like I am an alien from another planet. He declines instead telling me I need to learn to adapt to the noise levels around like I am making a fuss about nothing.

Photo by Katie Rainbow ud83cudff3ufe0fu200dud83cudf08 on Pexels.com

The day is extremely stressful with deadlines at every corner, I can feel the familiar build up in my chest telling me I need to tic. I am able to control it, but it puts enormous pressure on my body. I confide in my colleague who proceeds to tell me I don’t look like someone with Tourette’s and therefore why do I need to tic. The sad thing is I think she thinks she is giving me a compliment.

My fatigue and exhaustion are in full flow, but I arranged to meet my friend after work for some food. My whole being wants to cancel, but I have done this several times this month already because of my symptoms. She never buys it, she thinks I am lying to get out of seeing her. We meet up at her choice of restaurant – somewhere I have never been before – and notice there isn’t anything on the menu I can eat. She knows this I have told her before and I say it again now. She looks at me like I am lying – ‘what nothing at all? ‘Why don’t you try that or that?’ I tell her I can’t because of my stomach issues, she tells me she knew of somebody else who ‘claimed’ to be like me and actually they could eat these things, they had just convinced themselves they couldn’t. Needless to say, I left the restaurant extremely hungry.

My friend walks with me back to the bus stop, it is incredibly cold out and my circulation is struggling despite the layers and layers of clothing. I mention the pain I am in, and she tells me she has the same problem. What Raynaud’s I ask? No, she replies I just get a bit chilly. She also feels the need to mention I was way too quiet. I tell her my ME makes it hard to function let alone talk especially after being at work. She tells me gets tired, how is my ‘tiredness’ any different to hers.

Finally, I am back on the bus on the way home. I cannot wait to get home and to be able to eat and wrap up and call it a day. My head is banging, my stomach is griping, my pain is at an all time high partly from the cold, partly from the Fibro. My exhaustion is making me dizzy and nauseous, so I sit on the front seat. Other people get on, some are elderly and obviously feel I have stolen their space. I am asked to move, those seats are for the elderly or disabled I am told. I tell them I am disabled, but still move. I am told I am wrong because I don’t look disabled or sick, and that I should think myself lucky I look and am as healthy as I am. I feel embarrassed and fix my gaze outside the window, there’s no point arguing they don’t see it therefore they’re never going to believe it.

I collapse into bed, weak and defeated by the day. The saddest thing is I know it will only all start again tomorrow. The unconscious bias against invisible disability/illnesses. The problem being when people cannot see what is wrong with you or the symptoms you are harbouring, they tend to believe your symptoms are not as bad as you say they are, that you are exaggerating and is some cases may believe you are lying. They may think you are convincing yourself you are worse than you are, or in some scenarios believe it is attention seeking behaviour – all because they can’t see it and if they can’t see it, it can’t be real right?….

I hope this post helps in sharing the reality of invisible conditions, and the constant battle it is. What are your experiences? Are they similar to the ones I have described?

Sarah xx

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Chronic Illness · Fibromyalgia · Heat · Summer · Tips · UCTD

The Downsides to Summer Heat When You Have a Chronic Illness

9th Jul 2021 memyselfandchronicillness11 Comments

I feel a slight fraud writing about summer heat when the rain has been pouring down for the last few days. Even so we are now approaching the summer months and whilst many people up and down the country welcome the hot weather, for many with chronic illnesses the heat can be a nightmare.

For some people the summer heat can bring on flare-ups and introduce many unwanted symptoms. You may find the heat actually improves some conditions, but of course this will vary from person to person. However, for those of us who find heat a problem this can manifest in a number of ways including:

Increased fatigue
Increased pain
Dizziness
Sensitivities to sunlight
Overheating of body
Finding it harder to breathe
Increase in Hay fever/Allergens
Nausea
Irritation of skin
Struggling to sleep
Headaches

So, how can we prepare ourselves for the summer heat?

As we know by now chronic illness symptoms are often out of our control, even in the best of times, but this doesn’t mean we shouldn’t do all we can to minimise these effects and try to help ourselves along the way. Remember you don’t need to be sunning yourself on a beach to have heat affect you – even sitting indoors at home when the hot weather hits can be a challenge!

My top tips for staying a cool cat in the hot heat are:

Stay hydrated – This is probably a no-brainer, but for someone like me with gastro issues it can be really difficult to keep drinking. Nevertheless, staying hydrated in hot weather is so important when you are sweating more to stop you becoming dehydrated. Dehydration can increase dizziness, headaches and other nasty symptoms, so remember to carry a bottle with you even around the house so you can keep having a sip.

Pick your outfits accordingly – When the weather is hot we want to be paying attention to our fabric choices to minimise excess heat. Fabrics such as cotton or linen are ideal in warmer weather as they are lightweight and breathable. For people who are sun sensitive remember to wear long sleeved garments and coverings to protect your skin from the sun.

Go indoors – Being a chronically ill person you are probably used to staying indoors and when it comes to the summer heat this isn’t necessarily a bad thing. As a general rule you should aim to stay inside during the hottest points of the day when the sun/heat can do the most damage.

Photo by Andrea Piacquadio on Pexels.com

Stay protected – If you have no choice to be out in the sun – always remember to wear sunscreen with a high factor, protect your eyes with UV protection sunglasses and protect your self from brightness by wearing a wide rimmed hat or putting up an umbrella.

Eat well – As well as drinking lots, eating is important too to help with our blood sugars. Heat can make our appetites decrease, so make sure in the times you do eat your eating nutritional food that is easy to digest and has high fluid content (to help with hydration).

Invest in cooling products – Take advantage of any deals you find on products that will help with keeping you cool. For example portable and/or room fans, cooling pillows, cooling packs, neck fans, sunshades for windows, water bottles, facial sprays, cooling towels, neck wraps etc. For those on a budget there are many DIY things you can make yourself to keep the heat at bay. Even wetting a towel may be helpful!

Listen to your body and know when enough is enough – The summer months always put a smile on people’s faces, and because of this happiness it can be hard to listen to a body that is screaming for you to stop. But, unfortunately summer doesn’t mean you can ignore what your body needs. Don’t take your lead from others, listen to your own requirements to keep as well as can be, and weigh up the pros and cons to any situation you are in. Rest is so important in the summer, so don’t forget to factor this into your day as much as everything else.

Here we are everyone, my top tips to staying cool in the summer heat. Like I said before, specific conditions are extremely problematic in hot weather and there is not a great deal that will change about that, but hopefully having some preparation will make it more manageable.

What do you find helps you in the summer months?

Sarah xx

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

The Month of May – Awareness Days/Weeks

14th May 20218th May 2022 memyselfandchronicillness6 Comments

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 have Fibromyalgia awareness day on 12th and depending on where you are in the world for the whole of May. M.E awareness day again on 12th and awareness week 9th -15th (Updated for 2022) . Finally, Mental Health week from 9th-15th May. (Updated for 2022).

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.

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

'Living with' Series · Fibromyalgia

Living with… Fibromyalgia

19th Feb 20212nd Apr 2021 memyselfandchronicillness7 Comments

It’s a new week and therefore a new instalment in my ‘Living with…’ series, and this week we are talking about Fibromyalgia. You can view previous posts in the series about Tourette Syndrome here, PCOS here and UCTD here.

So let’s get started on life with Fibromyalgia. Fibromyalgia is described by the NHS as a long-term condition which causes pain all over the body – but trust me it is so much more.

As well as pain, people with Fibromyalgia can suffer with fatigue, stomach problems, headaches, muscle stiffness, pain sensitives, dizziness, cognitive issues such as brain fog and these are just a few of the symptoms.

Fibro is notoriously difficult to diagnose, but more than that it is a condition which is hard to get significant recognition for.

When and how I got diagnosed

Fibromyalgia was a diagnosis I received around the age of 27. Like a lot of people with this condition I was ill for a very long time before I was considered to have something more going on than just being stressed out. My initial symptoms were dismissed on a regular basis by health professionals who believed I was simply burning out from work, but I was becoming more and more unwell. So unwell in fact I became like someone in my 80s and not my 20s. It affected my ability to work, to socialise, in fact my ability to do anything.

After much back and forth with the doctor and referrals to the wrong clinics, I was eventually diagnosed with Fibro by a Rheumatologist and discharged from their care the very same day.

What I find different with Fibromyalgia

Fibromyalgia is the condition I have fought against the most out of all my conditions, purely because of the lack of support available. Whilst the majority of my conditions are invisible on me, I have found Fibro itself invisible in the medical world too. There seems to be no form of treatment other than self-management, no productive advice and no guidance on where to go after diagnosis. This of course may very well be different for others – a lot of the time these things are based on location, getting understanding doctors and local facilities available – this is just my personal experience.

What I wish people knew about Fibromyalgia

That Fibro is a condition that fluctuates. Therefore it is possible to have ‘better’ days where you can do more on some days than others. However this doesn’t mean you are suddenly cured or like some people believe ‘are not as ill as you make out,’ – the reality is a good day for me isn’t the same as a good day for you, it is just a better day for me which isn’t the same thing.

The most difficult thing about living with Fibromyalgia

No doubt it is the endless symptoms attached to it. Having such an exhaustive list of symptoms is not only exhausting in itself to self-manage, but it is the never-ending factors that can set symptoms off. From the weather (both hot and cold), stress, anxiety, a bad night’s sleep, getting too much sleep, walking too much, not walking enough – the cycle can be constant.

What has Fibro taught me?

That I am way stronger than I ever give myself credit for. Fibro literally turned my life upside down and I lost everything from my job to my independence, yet I am still going. Yes I am still in the same position, but I am trying and that is all any of us can do.

For more advice on any Fibro symptoms (or symptoms related to any of my other conditions) check out my symptom section here where I give tips on things I have found helpful. Remember to always check with a doctor before trying any new suggestions.

New instalments in the series are now available – click on the condition to find out more: M.E/CFS and Mental Health.

Chronic Illness · Fibromyalgia · ME/CFS · Mental Health · PCOS · UCTD

Family, Friends and Chronic Illness

23rd Oct 2020 memyselfandchronicillness2 Comments

You think I would be used to it by now the subtle eye rolls, the exchanged looks of ‘here we go again’ and the deep sighs of ‘what is wrong now’ falling out of people’s lips. The sad thing is I am used to it, but it doesn’t make it hurt any less. I don’t expect anything less from strangers, people who don’t know me or my life, to look and make such gestures confused at what it is that is wrong with me exactly. I look ‘normal’ after all. Is it annoying? Yes, but does it surprise me? Not anymore sadly it is part and parcel of living with invisible chronic illnesses. It’s the people who do know me that react like that which are the real stingers; my family and friends.

How do you describe chronic illness to someone who doesn’t have one? You can give it a good go if needed, but ultimately its just words if you don’t experience it yourself. Throw in multiple chronic illnesses and it gets even more complicated as people start to suspect you may be some kind of hypochondriac as why it is always you that has to have everything wrong. I didn’t choose to get ill, yet I am and if not having to deal with my own emotions regarding my situation wasn’t enough I have to deal with everyone else’s too.

As much as I have struggled with the changes in my life over the years, it has been difficult for other people in my life too. Gone are the days of the workaholic professional in a well-paid job who back in my university days could be out for hours on end and not bat an eyelid. Now I am doing well if I manage to leave my house once every few days for a bit of fresh air. I have seen the changes in my life and in me as a person, so why wouldn’t anyone else notice it too?

One of the hardest things about being chronically ill – symptoms aside – is the disappointment I feel in other people around me. They don’t show it on purpose to make me feel bad, in fact I am not sure they realise they are even showing it at all, but I can feel it. The disappointment I am not the same person anymore that my life isn’t going in the direction it once was. I had such big goals in life and now my biggest achievement is having a shower every few days. I have learnt through my understanding of chronic illness that my goals now are just as important as my goals were before, but it doesn’t mean they seem important to others. They are out working, doing housework, raising babies and here I am congratulating myself over the fact I have washed my hair.

The truth is I feel at times I have to press the mute button on how I feel about my chronic illnesses to pacify others. Because whilst they support me physically I feel I have to support them emotionally when it comes to my illnesses more so than myself. I pretend I am ok that the mind-numbing fatigue in my body is not too bad, that the dizziness in my head will pass and the thumping headache will subside. Why you ask would I do that? Because if fighting the symptoms of chronic illness daily has taught me anything it is I so much stronger than anyone could imagine.

Seeing the sadness of others about my situation and at times their annoyance can stir up a mixture of emotions inside of me. Sometimes it is anger that they cant be more understanding, other times embarrassment that at the age of 32 I am still living the way I am and am so dependant on others, and on occasions hurt because I feel if the people who know me best don’t understand me then how can I get others who don’t know me at all to.

My feelings aside it has never really dawned on me however how it must be loving someone who has chronic illness. Loving someone and watching them live life with so many limitations. Whether that be your daughter, son, mother, father, brother, sister, friend or spouse, the person or people on the other side of the coin are suffering too. They don’t have a quick fix to make everything better so all they can do is be there, watch and support. They might not get it right sometimes, but do any of us? Because in the same way chronic illness patients may filter what they say to protect their loved ones, their loved ones probably do the same back.

Chronic illness doesn’t just affect me, sure I am living with the symptoms and the limitations, but it affects my friends and family too. It robs us all. It is natural whichever side of the illness you lay on to experience a cauldron of emotions in relation to the situation; it doesn’t make anyone bad people. We are all dealing with the beast that is chronic illness one way or another, so it is about becoming more understanding to each other’s needs.

Talk and listen, be honest and be considerate. Don’t take it to heart if sometimes you hear things don’t want to hear because sometimes you may say things too that are hard for others to digest. Even though talking is important so is having fun together and making time for each other that isn’t just about chronic illness. You are not your illness so it’s important at times to remind others of that too.

Remember you are not problem, your family and friends are not the problem. Chronic illness is the problem and with your loved ones by your side you can face it together and become stronger than ever before.

PLEASE NOTE – If talking to your loved ones is too hard and not an option then the use of support groups are fundamental and a great tool in hearing about other people in the same boat. This includes family, friends and carers as well as sufferers themselves. Don’t suffer alone – there are more people out there then you realise.

Activities · Chronic Illness · Fibromyalgia · ME/CFS · Mental Health · Stress Management · UCTD

Action Plan for Seasonal Changes

15th Oct 202027th Nov 2020 memyselfandchronicillness3 Comments

Depending on your specific condition seasonal changes can make a huge difference to chronic illness both physically and mentally. Some people may even experience Seasonal Affective Disorder (SAD) which is a type of depression that is essentially affected by the seasons of the year. Before I was diagnosed with Fibromyalgia, ME/CFS and UCTD I was told I had SAD because I struggle predominately more in the autumn/winter months. I know now the reason for this was because the colder months made my conditions worse and therefore my mood lower. Although I do not have SAD as such I have found that some of the techniques I used in preparation of the colder darker months can help with chronic illness.

Preparation is key so in terms of my own experiences I am quite late as I normally feel the impact October onwards, so I would aim to start getting ready September time, but here we are mid October and I am only just beginning never mind!

Please note if you do suffer with SAD specifically then contact your doctor for more advice and information.

My first step on my action plan is to organise my winter drawer. Quite simply I select a drawer (or 2!) in my cupboard and a section in my wardrobe and fill it with my essential winter items. Items include jumpers, socks, tights, ear muffs, thermal tops and my most favourite item a bobble hat. Bigger items may include onesies, dressing gown, slipper boots, (although I wear these all year round), and hot water bottles. By having the items ready I don’t have to worry about finding them when the seasons hit and it is easier to throw things on without any debating when I am feeling not so great.

My winter drawer containing thermal vests, tights, socks, ear muffs and bobble hat

My second step is to organise myself. I do this by putting together some type of diary of course this would be helpful all year round, but I do find in the colder months my ability to stick to things wanes significantly as my symptoms affect me more. You can do this to record dates of importance, but to also plan things coming up to manage your energy levels more effectively. You can do this with a regular diary, an electronic version, or even a large wallchart/calendar. This year I have opted for an online calendar in order to plan any blogging bits I want to do which will not only help me manage my energy, but hopefully keep me motivated.

My third step is to brighten up my living space. Whilst there are many amazing things to enjoy about the autumn/winter months they can be quite dark, cold and often wet months, (in the UK anyway!), so I find it important to inject colour into my life in other ways. I do this by bringing out my colourful accessories and furnishings and things that remind me of warmer climates. Cue the orange and yellow cushions and the beach pictures!

My fourth step is to plan how I am going to get more natural light. Being chronically ill it can be difficult to get out the house at the best of times, but especially when it cold and wet. Whilst at this stage my plan is to have a short walk every few days to soak up the light the reality is that may become difficult. Other ways of dealing with this is for me to reposition my spot in the living room so I am sat next to windows, make sure my curtains are thinner to get more light in my room and to set up my sunrise/sunset alarm clock to help me with getting to sleep and waking up.

UPDATE – My sunrise clock is not working even after changing the bulb arghhh!

My fifth step is to look at the positives of the seasons. As I already mentioned the autumn/winter months have a multitude of amazing things about them, so it is important to remember it is not the seasons themselves that are the problem – it is the lack of light and warmth. The colours of autumn are beautiful and there are many things to look forward to regardless of how much energy I want to contribute to them. Events such as Halloween, Bonfire Night and my most favourite time of year Christmas – even though my body may be struggling they are great things to focus my mind on. If the winter is a real problem it may be an idea to start doing little bits for Christmas now, so it doesn’t become too overwhelming nearer the time.

So here you have it my 5 step action plan for the seasonal changes. Other things to consider are freezing meals, taking up a new indoor hobby, light therapy boxes (make sure to always do your research), eliminating stress as much as possible and the usual suspects in monitoring your diet and exercise pattern.

Remember the more you prepare now, the less pressure you will put on yourself later!

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

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).