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

Pacing

Pacing is I’m sure a word that you are used to hearing wherever you go for help related to your condition; at the doctors, hospital, group workshops and even on the internet. ‘You need to learn to pace’, ‘being able to pace is key’, ‘pacing should be something at the forefront of your mind’ are just some of the phrases I was constantly hearing wherever I went. However whilst everybody was preaching at me to do just that, nobody could actually tell me how to do whatever that was; in particular how to pace when you have a million and one things to do.

So what does pacing even mean? Pacing in chronic illness terms is a technique used when managing your energy levels. A technique which allows you to get things done without burning yourself out. It consists of rest periods throughout the day and is a method used to balance activity periods (which can be physical, emotional or mental) alongside relaxation ones. It is important to note here that an activity task is anything that uses your energy – this doesn’t have to just be a physical activity e.g. worrying about an upcoming situation is an activity which maybe isn’t physical but would still be classified as an activity all the same in the form of a mental and/or emotional one. I am sure anyone with conditions similar to mine would agree that actually it is the mental and emotional activities that tire you more than the physical ones – so remember that!

Now for the question on everybody’s lips – how do you actually pace? There are a number of techniques you can use to pace and you may find some work better for you than others depending on your lifestyle. To begin with it may be helpful to identify how much energy you use for a particular activity, whether you believe it is a physical, mental or emotional activity and ask yourself what it is about the activity that you find difficult i.e. do you enjoy the activity? Is it stressful? Once you have figured this out you can use it to include any of the following techniques:

  • Keep a diary for a few days to a week whereby you record everything you do during the day. Pick three colours to represent levels of difficulty – low, medium and high and label each of your daily events in whichever colour represents the difficulty i.e. watching television may be a green because it may be low energy whereas talking to someone may be red because it takes up more energy and is therefore high. By keeping this diary you will start to see patterns in your day – maybe you do high energy activities in the morning and can only do low ones for the rest of the day or maybe you don’t spread activities out enough. The diary isn’t to judge yourself it is show yourself your day to day patterns.
  • Think about things that give you energy rather than take energy away. Energy increasers can be anything from food and sleep to doing anything you love and spending time with people you love. Use these activities to give you energy; it may not be in the conventional sense but feeling happy can make you feel positive and therefore more energised.
  • Prioritise – If you have a number of activities to complete then write them down and work out which need to be done today and what can wait until tomorrow or next week.
  • Start and Stop – If you are doing an activity, don’t feel you have to persevere until it is finished. Think about doing it in bursts so you don’t overdo it.
  • Pre-decide the amount of time spent on activities – By pre-deciding and planning how much time you will spend on each thing you do will eliminate the chance of spending too long on a particular activity. You can use your diaries from earlier to help you see how much time you spend say reading and calculate an average time that is doable for you and stick to it. This will allow you to do an activity without going overboard.
  • Switching up activities – This is probably my favourite option and what I find most useful. As I mentioned before different activities are demanding in different ways – physical, emotional and mental. Therefore a good way of pacing is to change where your energy is being used by swapping between physical, emotional and mental activities as well as adding in some relaxation ones too.

Pacing is hard work there is no doubt about it but it is extremely important not to judge yourself if you find you don’t pace as much as you should. Life is not always straight forward and it is not always practical to spend every single day planning and prioritising what you are and aren’t going to do. The key message here is if you are in a position where you can then try.

Personally I think the significant point to pacing is the understanding that although in modern day life relaxation and rest periods are recommended for keeping healthy for all people, for the chronic illness person it is essential.

Chronic Fatigue Syndrome · Chronic Illness · Fibromyalgia · PCOS · Symptoms · Tourette Syndrome

Symptom Section

New – Starting next week alongside my opinion posts I am now going to start posting a weekly symptom section focusing on different symptoms associated with chronic illness.

I will share with you my own experience of each symptom and share ideas I have found useful through the years. As with all symptoms of chronic illness not everybody has the same symptoms and not everybody finds the same advice helpful for them, but hopefully you will pick something up along the way of use.

Next week’s symptom – Pain

Chronic Illness · Fibromyalgia · ME/CFS · PCOS · Tourette Syndrome · UCTD

Being More Than an Illness

There she is, the girl who believes there is something wrong with her.

The girl with what is it again, fibro something.

The girl who is ‘ill’ or so she says.

It is me, I am the girl the gossips are speaking about, the girl the nosey neighbours interrogate as they cant quite understand how at the tender age of thirty two, (update -now thirty four) I am still living at home with my mum (update – yes still living at home). Or the fact that at I am unable to work and am only just about able to rear my head out the door from time to time. She says she’s ill they remark but there doesn’t seem to be anything wrong with her. She doesn’t look ill, she speaks politely and dresses nicely, it must be all in her head. So in some ways you could say she is ill, mentally of course and not physically like she believes. Oh how little do they know.

Chronic illness has been part of my life for as long as I can remember, in fact there are times where I cant even remember the days when I wasn’t ill. I was diagnosed with kinetic Tourette Syndrome at the age of 18 and in my early twenties I had a freak accident which caused a lot of damage to my body leading to a diagnosis of fibromyalgia and ME/CFS in my late twenties. I then received a further diagnosis of polycystic ovary syndrome (PCOS) at the age of 31, and most recently a diagnosis of UCTD at 33, so like I said chronic illness has been a part of me for all my adult life.

I have always been a self-conscious individual, someone who enjoyed the invisible life, never wanting to make a fuss. Nevertheless before fibro and ME/CFS, I was doing well in life. I had managed to obtain my degree in psychology despite my accident and I was doing well in a successful career in HR. I was making good money, I was building a life and then I became ill. Becoming ill I lost everything from my job to my financial security, my future prospects to who I was a person. Suddenly I was thrown into this world of uncertainty and constant cycles of ill health, making one step forward and taking two steps back.

I was grieving the life I once knew but more than that I was grieving the life I had planned. They say there are five stages of grief; denial, anger, sadness, bargaining and acceptance and boy did I drag each one out, unable to let myself get to that acceptance stage for fear that once I got there it was as good as saying I had given up.

I was in denial for many years believing my diagnosis was wrong whilst experiencing bursts of anger and sadness, comparing myself to everyone around me who were living their lives whilst mine was passing me by. I researched my conditions inside out and whilst it definitely helped me understand my body more it didn’t help me understand my limitations. So it was here I went into the bargaining stage and convinced myself that if I made slight changes I could go back to work and that’s exactly what I did. I changed my workplace, my hours, the level of work I was doing and I pushed and pushed trying to get myself back to a life I believed was right for me.

Forcing myself back to work, albeit a new environment, I actually made myself much worse rather than better but whilst my body was a wreck, it was my mind that was shattered the most. I was in turmoil mentally because it was here in this moment that I realised my life couldn’t be the same again, not if I wanted to stay as healthy as possible. Suddenly the life I had was gone and working especially at the level I was at couldn’t happen anymore and the future I had planned was up in flames and I was lost.

Where I am currently with my health and how it is viewed would differ slightly depending on who in my life you spoke to; some people may say I still dip in the bargaining pool but I am predominately in the acceptance stage. Acceptance is an extremely difficult pill to swallow because in order to move on you need to let go. Letting go has led me to where I am now; putting my health first and listening to what my body actually needs.

However it’s through putting my health first that I have found myself in the situation whereby most people only see my illnesses and not me. The neighbours gossip, my friends have disappeared and even people who have genuine concern about me and my life, only ask me questions regarding my health like that is all I am; one big medical issue.

I don’t blame people for only seeing my illnesses and not me because at this moment in time I have no job, no partner and no children. Plus with fibro and CFS my hobbies are dependent on my body’s ability to co-operate and therefore consist of low key things I can do on my own to minimise the impact on my body. Therefore the only consistent thing in my life is my chronic illness.

Nonetheless I am more than an illness, a condition, a medical issue and a disease. Although my future may no longer to be able to be or look like it once did, I still have dreams and aspirations. I still have hopes and I am still a person. Though at times it is not just other people but myself that I have to remind of that.

My top tips for remembering that you are more than just an illness:

  • Reconnect with hobbies or passions you may have forgotten – Being chronically ill you can find yourself constantly battling symptoms as well as treatments and different ways of managing your condition/s, all of which can be very consuming. Spending time on activities you enjoy can give you some respite if only mentally from the anguish of your day to day struggles. It can also help you to focus on something that isn’t just about being ill.
  • Create a ‘this is me’ chart – To remember who you are as a person it can help to ask yourself specific questions to reconnect with yourself e.g. what is my favourite colour, my favourite type of food and write it down. Writing things down can sometimes make you connect more as you can see it in front of you down on paper, exactly who you are and what makes you special. You could even use it as an opportunity to tune into your creative side by decorating the paper in any way you want from bright colours to magazine cut-outs, anything that when you look back at it makes you smile and makes you think ‘this is me’.
  • Set yourself (small) goals – Chronic illness has a tendency to steal away your dreams and as a result make you feel down, depressed and at times a failure. A big factor in happy peoples’ lives is feeling a sense of achievement. Setting small achievable goals is a way for you to feel you are indeed achieving something. Whether it be completing a form of exercise every other day or reading a chapter of a book each night, achieving your goals will make you feel good about yourself and help you to see that you illness doesn’t control everything in your life.
  • Challenge negative opinions – This can be quite a tricky one as it depends on the person, situation and intention. Nevertheless if someone’s behaviour towards you is upsetting maybe talk to them about it. A lot of time ignorance surrounding illness is a result of people not understanding your illness, especially invisible illness. They can’t see what is wrong with you visually therefore they often interpret that as there is maybe something wrong with you mentally and/or emotionally. Encourage them to ask questions and maybe then you can explain how it makes you feel when people don’t see you beyond the health issues. Hopefully speaking honestly and openly will encourage others to think about their actions towards you and if not move on to my next bullet point.
  • Believe you are more than your illness – A lot of the time negativity comes from our own way of thinking which can be then be fuelled by others thoughts and perceptions. Sometimes you come across people in life who just don’t understand you no matter how much you explain but that’s ok. Is it annoying? Yes, but is ok because you don’t need their acceptance you need your own. The most important thing is how you see yourself and not how other people see you. You need to appreciate your own worth and regardless of what other people think or say, once you start to see yourself as a person first and a person who has an illness second then everything will become much easier.
Anxiety · Mental Health

Anxiety in the Workplace

Work is hard for some people, stressful to most especially in the modern day lives we lead. What with long hours, increased workloads, it can be hard to switch off once you leave work each day. Anxiety in the workplace however is a whole different ballgame. For anyone who has experienced anxiety on any level will understand the overwhelming physical sensations anxiety brings but more so the debilitating mental side effects too.

The workplace for me has always been an anxiety induced setting but the majority of my anxiety centred on the people and the environment itself more so than the actual work. Of course the work bothered me, mainly because being an anxious individual, I’m a perfectionist, I want people to like me and as a result I would push myself too far in order to be great at my job. Nevertheless the overwhelming sense of pure anguish came as the result of being around others. Colleagues who I have never quite fitted in with, customers who are very quick to criticise – never a good combination when you are anxious other people are looking at you and making judgements.

In a previous retail job, I had a full on anxiety induced meltdown when I had to serve on a till for the first time. The thought of people watching me, sent my heart into palpitations and my stomach fluttering with nerves anyway, so when I was called over I was already in a state of panic. Clutching the barcode, I tried to run the scanner over it but my hands were uncontrollably shaking. So much so in fact the customer made a comment, making me even more self-conscious that I couldn’t use the till. All I wanted was to escape, I felt like a failure, but more than that I felt disgusted with myself that I couldn’t do a basic task like everyone else. In the end my colleague took over and I left the shop floor which later lead to my resignation – I just couldn’t face the humiliation.

I have faced many more anxiety moments in the workplace since from telephone travesties and not knowing what to say to attending team meetings and having to speak in front of other people, to be honest the list is endless.

The one thing I have learnt is to take my own needs into consideration. In an ideal world my anxiety would be knocked on the head but until then choosing a working environment that is conducive to what is going to make me feel comfortable is the best solution. For me being in a workplace whereby I don’t have to directly deal with people face to face is perfect bearing in mind my social anxiety, in which I can work independently or with only one or two others. I have also learnt that if I have faced a situation before and got through it then I can do it again, yes it’s scary but the feeling will pass and I will carry on.

Another helpful tip is to learn what it is in the workplace that makes you anxious – is it the people you work with, the type of work you do, the environment you work in? Once you have figured it out, the next step would be consider if this is an issue that can be changed. If applicable maybe speak to your manager about your concerns, your HR department or perhaps seek out 1-1 counselling externally to come up with techniques that will help you cope.

You need to remember you are not alone, in fact there may be people you work with right now that feel exactly the same way as you do. As the old-age saying goes ‘It’s good to talk.’

Anxiety · Mental Health

Anxiety Episode – Presentations

I thought I had got away with it, I was now in my mid twenties I thought I would never have to face these days again but here I was, back in the body of my fifteen/eighteen year old self and I couldn’t face the idea of feeling that way again. Having all those eyes boring into me, with expectations I couldn’t live up to and the feeling of worthlessness that would invade my body. Yet here I was in a state of debilitating anxiety and there was nothing I could do to escape.

I have always been an anxious person, a worrier, a ‘what if’ kind of girl. Always cautious about germs, danger and just getting things wrong. I developed OCD in my teens alongside generalised anxiety, all whilst juggling the daily struggle of kinetic Tourette Syndrome. Whilst all these factors were difficult to deal with, by far the worst was my social anxiety and basic anxiety about being around other people. Being around others I wouldn’t know what to say, where to look or even how to communicate without going bright red. I hated people looking at me, and what’s more I hated people pointing out my shyness. At school I was always referred to as the quiet girl, the if you blink you missed her girl because I became so invisible to everyone and after a while that’s how I wanted to be.

With this in mind, you can probably imagine that standing up in front of people was nothing short of a living nightmare for me and therefore giving presentations at school were a form of complete torture. Yet at school and then later at university I had no choice but to stand there and be judged in order to get graded. Whilst the blushing was embarrassing and the chest pounding was out of control, the uncontrollable shaking of my hands and voice were intense and there was no way of hiding it. When my education days were over, I swore I would never put myself in that position again where I would feels so vulnerable and powerless, those days were behind me – or so I thought.

Maybe I heard wrong, but no she has repeated it again, my work colleague that is, about how she wanted me to come down to the meeting the following week and give a mini presentation to the attendees about my role and the department in general. I felt sick to my stomach, to a point I could feel it rising in my throat. Back were the feelings of my earlier days as my heart started pounding and I felt uncomfortably hot. Of course I smiled back at her and said ‘no problem, I’ll do it’, how could I not, how was I supposed to say that at the tender age of twenty seven, I was scared of interacting with other people. So I kept quiet and my inner torment began.

The interlinking week between being asked to speak and actually doing it, in some ways took forever and in others flashed by like Usain Bolt. From the second I was asked, that was the only thing that consumed my brain, whether it was whilst at work itself or when sitting on my sofa at home, all I felt was fear. As the date got nearer, I even started fantasising about ways of getting out of it, or maybe more specifically ways I could pull a sickie. The only problem with that being I was already over my limit of sick days and with a multitude of health problems, I needed to preserve my sick days for when I was actually sick. So I agonised, I shook, I cried and I was sick to my stomach all the way to the dreaded day.

Going into work I actually felt fairly chilled, knowing the presentation wasn’t until the afternoon. Yet the second I sat down at my desk the nerves kicked in, especially when my colleague came over to remind me of my time slot was and how much everybody was looking forward to seeing me. Whilst some people would take it as a positive, I could only see the negative, the expectation placed upon me. Going off on my lunch break, I honestly considered not returning. I mean did I really need this job? Maybe, maybe not but one thing I did need was a reference and walking out probably wasn’t going to give me the best kind. So I took the only option available to me and went back to work.

As the minutes ticked by, the anxiety inside me was building and my heart beat was quickening. The calendar reminder flashed upon my screen, it was time. Tentatively I rose from my desk and walked around to my manager to let her know I was leaving the office, straight away my body language gave away my discomfort, she could tell I was drowning. Secretly I was hoping she would throw me a life jacket and insist it wasn’t worth my turmoil, but no instead she gave me a quick pep talk (to no avail) and sent me down.

Entering the room, my quickened heart beat was now in full force and out of my chest, through the window and galloping down the road. I was hoping to hide my shaking hands by carrying paperwork and to give me something to focus on. The second I entered the room, all eyes were on me and very quickly I noticed the chair that had been placed in the middle of the room was for me to sit on, so everyone else could surround me like a caged animal. To be honest the words that came out of my mouth were a blur, and I probably wasn’t even in there for more than ten minutes but it was the longest ten minutes of my life. I didn’t ease into it at all and I was just as nervous leaving as I was going in. Once I had left the room, my shaking hands went into a whole different level as the adrenaline rushed through my body – I was a mess but I had done it and although my breathing was erratic, I was still breathing.

Although to this day anxiety plagues me in certain situations and I would never knowingly put myself in situations whereby I have an audience and all eyes on me, I do hold on to the notion that even in my most severe bouts of anxiety, I will get through to the other side and more importantly I will survive.

Mental Health · Tips

How to Manage Stress at Home

As mentioned in my previous article Modern Day Stress and How to Manage it (click to view here), in these modern times stress is a factor that is ingrained in the lives of most people. As people spend more time at home, it is vital we start to look at our homes as a sanctuary and a place of safety, one that is as stress free as possible.

Below I tell you how to manage stress levels while at home and how to make it a relaxing peaceful environment to enjoy.

1. Choose a space in your home

Most homes are filled with distractions whether it is other people or things such as technology, ready to snatch your attention. Choosing a space in your home (e.g. a corner of a room or a chair by a window) that can just be yours, free from other goings on will open your mind and body to relaxation every time you enter it.

2. Decorate your space

Ok this needs to be done with some thought – maybe don’t block a space off that is of communal use, but if the space allows try to make it your own. Think of what makes you comfortable and relaxed e.g. sitting on a cushion on the floor or on a chair maybe and decorate with such pieces. Maybe add some blankets choosing relaxing colours such as blues and greys to represent the sea.

3. Research and practise relaxation techniques

There are many relaxation techniques available nowadays from body scans to deep breathing exercises. The key is to find the one that suits you. Research techniques by asking others, watching YouTube clips or reading self-help articles and practise until you find the one that is the right fit.

4. Take note of your diet

You have probably heard by now how much mind and body are connected. A healthy body will contribute to a healthy mind and one way of keeping a healthy body is to maintain a healthy diet. Keeping up with a good portion of fruit and veg and a balanced diet rich in nutrients will make you feel better overall. To achieve this write a meal plan which you can stick to each meal time and when you do a food shop. Factor in snacks if needs be and you never know you may develop a love for cooking you never knew you had.

5. Write a happy list

We all have things in life that makes us happy and give us that feeling of content, so make a list of what does that for you. It can be anthing from watching comedy clips or baking to caring for your pet to dancing to music. If you enjoy it, list it. Then when you need a stress busting moment refer to the list and be inspired to create your own bit of happy.

6. Be kind to yourself

Being kind to others is so important but so is being kind to yourself. At the end of each day once back in your sanctuary of home, take time to reconnect with what is important and let yourself appreciate you for you.

All in all, managing stress of life in general needs some practise and patience. But by following this list you can to manage stress a little better at home which will translate into all areas of your world.

Mental Health · Tips

Modern Day Stress and How to Manage it

Modern day living has seen major growth in many industries including technology and the way we communicate. In some ways we are now more connected than ever with the ability to click a button or swipe through profiles to converse with someone. Yet while some areas are growing in a positive light other areas are increasing at an overwhelming rate and none more than modern day stress.

Stress has been an age old problem existing through the decades, the only differentiating factor perhaps being the reason for the stress. In this modern day world we experience stress from various areas in our lives including our personal and extended realms and in these most recent of times globally too. It can feel that no matter where you turn you are faced with some sort of stressor.

Stress is experienced by all of us, at fluctuating levels but we all deal with it in different ways. Some people take stress in their stride and are able to use it to their advantage by running with it and rising to the challenge. Others get overwhelmed to such an extent it has a negative effect on both their physical and mental health.

Being a perfectionist I am somebody who has always struggled with the impact of stress and I have always found myself becoming overwhelmed and anxious by the various pressures of life. In the last couple of years I have tried numerous ways to combat my stress levels and would like to share a few of them with you now in relation to different areas of our modern day lives.

5 Stress-busting tips for modern life:

Home Life

Create a relaxing space in your home – Your home should be your haven, it should be the place that you feel safe and secure but most of all relaxed. More so than ever we are spending more and more time in our homes therefore if possible try to find a space in your home (whether it be a chair by a window, a cushion on the floor or even your bath) that is just for you. Make the area as comfortable as you can and see this as an area of relaxation every time you enter it. Try to spend ten minutes in the area every day and take part in relaxing activities whilst there e.g. deep breathing, meditation or some easy reading.

Online Life

Focus on your offline presence – There is no doubt that our modern lives are heavily involved with the online world. From dating sites to social media profiles, to internet banking and booking appointments, our lives are played out in virtual form more than ever before. Whilst there are positives to this way of living and in most recent times the ability to keep connected is an extremely special thing, people do get consumed to an unhealthy level. Creating an image of yourself online that isn’t really you, is not only damaging to your self-esteem but creates an overwhelming level of stress as you compare yourself to others and deal with negative viewpoints on things you have posted. Spend time focusing on things you enjoy doing that doesn’t require you going online. Reconnect with hobbies you may have once forgotten about, that you can lose yourself in and don’t need reassurance to complete. By taking up interests that don’t require regular re-tweets or likes, you will give yourself a break from other people’s opinions and relieve stress in a positive way.

Work Life

Speak up and be heard – In these modern times of financial changes and increased workloads, employees are being expected to do more and more. From going in early, to working late, skipping breaks and taking on the work of others, workers are faced with multiple stressors on a daily basis. Whilst there is a level of stress you need to accept in the workplace alongside a talent for teamwork, you also need to identify when things are getting too much. Keep a to-do list and add to it regularly to get things out of your head and on paper, it is also helpful in seeing how much your workload is increasing and at what rate. If you find it is getting too much and is affecting your mental and/or physical health, then it is time to speak to your manager and be honest about how you are feeling. As an employee you have rights and your manager should understand plus it is so much better to tackle it sooner rather than later before the stress gets out of control.

Globally

Do your bit – There is no way dressing it up, at the moment the world is suffering and we are seeing life in a way we have never seen it before. We are all living in a state of stress at the moment, worrying about the future as well as the present. Whilst individually we cannot change what is happening right now, one way to combat your stress is to know you are doing your bit. Do what the government is telling you, stay at home, wash your hands and practise social distancing. In the same way do your bit to help the environment, by recycling, eliminating plastic and looking at your carbon footprint. Do the right thing to saves others as well as yourself and be mindful that whilst you cannot control what is happening around you, you are contributing to make it a safer world.

Yourself

Review your lifestyle – Figure out what makes you stressed and if possible change it, work out what makes you happy and make strides to improve those areas. If you need extra help in making those improvement within yourself than ask for help. Stress is a normal part of everyday life but if it is getting too much don’t suffer alone. Speak to your doctor, access help groups, sign up for counselling or online/telephone coaching and take an active approach in getting the help you need.

Uncategorized

More pages added

Just a quick note to say I have added my bits on PCOS and mental health in the above menu. Again I have discussed symptoms and my own experiences with each condition.

Now that I have given a general overview of each of my conditions, I can get on with blogging about different topics related to the land of chronic illness – so watch this space.

xxx

Chronic Illness · Fibromyalgia · Tourette Syndrome

Added Pages

Hey there,

I have added some pages above in the menu bar regarding Fibromyalgia and Chronic Fatigue Syndrome (ME) as well as Tourette Syndrome. Here you can find a general overview of each condition and my experience of them.

I am sure there are more technical ways of doing this with links and what not but I am learning as I go…

I shall move on to PCOS and mental health shortly.

Take Care

xxx