For Many People the Festive Season is Not a Time of Celebration

Social media is full of posts telling us how to have the perfect Christmas. Every other advert is forcing upon us ideas of perfect Christmas gifts. At this time of year it’s impossible not to be bombarded by the festive season and all its glittery glory – it’s everywhere we turn.

But what if Christmas brings misery, not joy? What if you are forced to observe this “happy” occasion from the isolation of your bed? Or, what if you cannot afford to buy your kids the perfect gift, or even provide a christmas dinner with all the trimmings?

For many people the festive season is not something to be celebrated. People living with chronic illness, bereavement or mental ill-health, can find this time of year extremely stressful and upsetting. And let’s not forget the many families living in poverty, the homeless, and those that live alone. Christmas can be a lonely time, and observing “happy families” and festivities on social media, can be painful.

Christmas themed blog posts are everywhere.

Most bloggers have already started their “Christmas posts” with “how to” guides about everything from buying the perfect gift, to tips on how to cook the perfect Christmas dinner, or ways to cope with the additional exertion the festive season brings. And reading all these posts makes me feel pressured to do the same. But I made a promise to myself when I started my blog, that I would keep my posts authentic to who I am.

So, I just wanted to say that, I’m sorry but you won’t be getting an abundance of Christmas posts from me. I could go through the motions of writing them, but it would be false advice. It would not be true to who I am. Let me explain why.

Why the festive season is a tough time for me.

As someone living with chronic illness and mental ill-health, Christmas is a challenging time for me. I am not well enough to visit family or friends. I’m not well enough to participate in the revelry. I’m not well enough to party. Funds are limited, so I can’t afford to spend loads on presents. My diet is very restricted, so no Christmas pudding or mince pies for me.

When you are severely affected by chronic illness and are housebound, it can often feel like you have been forgotten. The outside world continues on without you, and this only adds to your isolation. Christmas time can amplify this feeling of isolation and loneliness.

And winter can be a particular difficult time for those living with depression, and the cold weather can bring additional distress to those living with chronic illness and pain.

But also, as a child, our family did not celebrate Christmas for religious reasons. And as an adult I have never really seen the point of Christmas. To me it just seems to be a time of excess and waste. People spend too much and get in debt, and people consume way too much. I find the amount of waste quite staggering, especially when there are so many people going without in the world.

I’m not against Christmas, I don’t want to come across as a scrooge. But I think the message of love is lost amongst the mountains of gifts, excess, and the stress that the ridiculous amount of expectation brings.

So, I practice avoidance a lot during the festive season. I avoid listening to the radio because every other song is a Christmas one. I avoid social media, seeing everyone playing happy families and enjoying the “perfect” Christmas just reminds me of what I’m missing out on. I isolate myself more than normal just to survive the season, and I know I’m not alone in behaving this way.

I’m not saying this to get sympathy or attention. I’m extremely lucky to have loving family and friends – but I just don’t “do” Christmas.

Christmas can be such a distressing time.

Christmas can also be a distressing time for  those who are mourning the loss of a loved one. They are bombarded by memories of happy times together, which can exaggerate their feelings of loss. This time of reflection can be particularly hard for those who are recently bereaved.  

And let’s not forget the stress Christmas brings into our lives, and not just for those who are chronically ill. There is so much pressure to spend extortionate amounts of money and to “perform” the perfect Christmas. Although I don’t really celebrate the festive season, I can see that the only thing that really matters is the time you spend with those you love, not the amount you spend, or the number of presents you give.

How to help a friend who may be struggling.

“Sitting silently beside a friend who is hurting may be the best gift you can give”

If you are a friend or family member of someone who you think may be struggling to cope with the additional stress that the festive season brings, what can you do to help?

Most importantly, just be there for them. Let them know they are not alone and have not been forgotten. Ask them how you can help ease their stress. Are there any errands you could run? or maybe you could help wrap presents and write cards.

And, for your loved ones living with chronic ill-health – they may need a little extra love and understanding at this time of year. Please check up on them. They may be overwhelmed and not want a visit, but a text or phone call letting them know you are thinking about them could make their day.. They may “hide” from the world to avoid the pain of Christmas, but please don’t forget them.

Instead of buying expensive gifts, why not gift your time and company?

Your time and company can mean so much more than expensive gifts, especially to someone living with chronic ill-health. There are many ways you show your love and make a real difference in a loved ones life. Here are a few ideas;

  • Offer to take them shopping or shop for them.
  • Offer to visit them and cook a meal.
  • Run a few errands to ease their stress.
  • Ask if there are any jobs you can do around the house.
  • Offer to drive them to see family.
  • Offer to drive them to doctors appointment
  • Walk their dog.
  • Babysit their kids to give them a break.
  • Treat them to a pamper day at home.
  • Help them wrap presents and write cards.

How to help others in your community

Christmas is a time of giving, but it’s also an opportunity to help others, not just friends and family, but also the community you live in.

The amount of waste over Christmas upsets me, when there are so many people living in poverty. So I counteract this by donating to a local homeless charity. But there are many ways you can make a difference in your community:

  • Rather than buying one more present to add to the mounting pile, why not donate some toys to a local children’s charity?
  • Instead of spending £100s on food, most of which you won’t get round to eating, why not donate some to a food bank, or a homeless charity?
  • Or why not donate your time? There are many ways you can volunteer in your local community, and I can promise you the rewards far outweigh the time you sacrifice.
  • If you find yourself with unwanted gifts that you know you will never use, rather than leave them festering in a cupboard, why not donate them to a local charity shop?
  • Do your kids no longer play with their “old” toys because they were given so many shiny new ones as Christmas presents? If they are still in good condition your charity shop would love to receive them. The same goes for unwanted clothes.
  • And please don’t forget about your elderly neighbours who live alone. A simple card could make their day, or a visit to see if they are ok or need anything. The cold weather adds another dimension of isolation and your presence could mean the world.

You are not alone, even if it feels like you are.

If you are someone reading this nodding along, fearing the stress that Christmas brings, please know you are not alone. Do whatever you need to do to survive the season. Reach out and ask for help if you feel able, or hibernate for a couple of months if that’s what you need to do.

Please don’t feel pressured to conform to stereotypes at Christmas. Please don’t feel you have to compete with others. Please remember the “perfect” images you see on social media are just edited highlights of someone’s life, and no one’s life is perfect. Try to take your own path, celebrate Christmas within your means, and most importantly, try to enjoy this time. Take care x

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Resting When Tired Isn’t Lazy – It’s Self Care

Since my heart procedure 2 weeks ago, it feels like I’ve done nothing but sleep. I know I should be thankful my poor, exhausted body is finally letting me rest, but I’m struggling with the notion that I’m just “being lazy” and the thoughts that I “should” be doing more. But where do these negative perceptions about rest come from?

Challenging negative perceptions about rest.

Yes, like many others, I find the concept of rest challenging. I have always equated rest to laziness – probably because it’s a message we are bombarded with from an early age. We are frequently told, to be a valuable member of society, we must work hard and push ourselves. We must utilise every minute of the day in the pursuit of reaching our goals. High achievers are praised, while more creative souls or dreamers are seen as lazy.

Our society equates success to monetary wealth and possessions, rather than peace, happiness and good health. Our education system does not equip our children with the tools needed to cope with the stressful lives we all lead. Emphasis is not placed on mental and physical wellbeing. Instead the focus is on working hard, achieving high grades and preparing our children for a lifetime of hard graft in their chosen careers. Of course these are all important, but surely there needs to be some balance?

The world around us has been designed to keep us busy, to keep us from getting bored. But this also stops us from obtaining the crucial rest that our bodies and minds need to survive and thrive. It also prevents us from making meaningful “real life” connections that are essential for our wellbeing.

I know from personal experience that if I don’t get the rest my body needs, my health suffers. When I choose to ignore the signals being sent by my body, and I instead ‘push through’, my health deteriorates quite rapidly. But rest is also very hard for me. My brain never switches off, it is constantly thinking about all the things I “should” be doing and all the millions of things I would rather doing at that moment. I often find I have to physically force myself to rest, although a more constructive term would be “concentrated rest”. Rest requires discipline, something I often lack.

What is rest?

Rest means different things to different people, but in essence it’s taking a break from our busy lives to focus on our wellbeing. It may be physically resting or taking a break from the mental strains in our lives, and of course, it can be both. It may take the form of meditation, or reading a book, or listening to music. Some people find watching their favourite TV programme gives them time to recharge, or it could be engaging in our favourite hobbies.

For those of us living with chronic illness, it may mean switching off completely from all distractions and lying quietly in a darkened room. Whatever form rest takes, it is vital for our physical and mental health. But how do we get passed the notion that we are being lazy?

I decided, the key to challenging my preconceived notions towards rest, was to educate myself. Why is rest so important? What happens within our bodies when we rest and sleep? Why is it so vital for our wellbeing?

Reasons why rest is essential.

Rest is essential for our wellbeing and it can positively impact on our health in many ways. So, rather than see rest as an inconvenience or a waste of time, try to concentrate on the “good” you are doing for your body and mind.

1. Repair, Restore and Recharge. Having a chronic illness is exhausting, resting gives our bodies time to repair. We often underestimate the importance of rest and the difference a few minutes of calm can make in restoring balance back into our bodies. Rest renews our energy levels and allows us to press the reset button, so we can continue with our day.

“Sometimes the most urgent and vital thing you can possibly do is take a complete rest”

2. A healthier body. Rest is as essential to our physical health as the water we drink and the air we breathe. Rest has been shown to improve cardiovascular health, and lower blood pressure and cortisol levels.

When we suffer with chronic, physical or mental ill-health, the importance of rest is multiplied tenfold, and our health deteriorates if we neglect it.

3. Less stress. Concentrated rest confronts stress in two ways. First, it reduces the demands of the situation we are currently in; we have no demands on us as long as we have the ability to mentally let go of unfinished tasks. (this is the part I find hard) . Secondly, rest reduces stress by increasing our resources, particularly energy.

Resting gives me much needed perspective and time away from the stress I experience daily. I often get so overwhelmed by my “to-do lists” and my “should-be-doing lists” that I feel suffocated. It’s so easy to let this stress consume me, but resting can break this cycle.

4. Opportunity for reflection. Sometimes it is hard to see the forest through the trees. Concentrated rest allows us to take a step back, to evaluate our lives and to identify our priorities.

For years I lived my life by keeping myself physically and mentally busy 24/7. I then wondered why I suffered so badly with insomnia. My mind and body were so active at night because I didn’t give myself time for rest and reflection during the day.

The importance of Sleep.

When struggling with ill health you may also find yourself sleeping more (day and night). This can sometimes wrongly be perceived as wasted time. We feel we are sleeping our lives away. But our bodies need sleep to stay alive, it is vital to our survival.

Sleep allows our bodies to repair themselves and our brains to consolidate our memories and process information. Poor sleep is linked to physical problems such as a weakened immune system and mental health problems such as anxiety and depression.


When you sleep, your body heals and repairs itself at a cellular level. Your brain signals the release of hormones encouraging tissue growth. Your heart and blood vessels are healed and repaired. Your body also stores up energy for the next day’s activities.

Sleep is essential to building your body’s natural defense system. As you sleep, your body makes more white blood cells, the foot soldiers of your immune system. Your brain forms new pathways to aid in memory and learning. Your body needs sufficient sleep to accomplish these things. It’s amazing to think this all happens while we sleep. The human body is truly a wonderful thing.

What if your body doesn’t respond to rest and sleep the same way a “healthy” body does?

I know some of you will be reading this and thinking; “But my body doesn’t respond to rest as it should. I can sleep for hours and wake up just as tired”. This may be the case, but so much is still going on “behind the scenes” that we are not aware of. We may not respond in exactly the same way, but rest is vital and without it our health deteriorates. When you live with a chronic illness it’s even more important to prioritise rest and sleep, and to appreciate the role they play in our mental and physical wellbeing.

It wasn’t until I experienced first-hand the detrimental effect sleep deprivation had on my overall health, that I truly recognised the importance of sleep. A few years ago, I spent 6 weeks unable to sleep, and the dramatic deterioration in my health was scary. So, even though you may not find sleep restorative, our bodies are still hard at work carrying out functions that are vital for our survival.

Rest is not always a choice – our bodies sometimes just stop functioning and “crash”. But if we can preempt this by practicing concentrated rest we may be able to prevent or reduce the severity of these “crashes”. I know it can be frustrating, and we often feel like we our fighting against our own bodies, but please know, by resting, you are doing the best you can for yourself – you are not being lazy.

Meditation.

If, like me, you struggle to switch your brain off to give your body and mind time to rest, a form of meditation may be a useful tool. Meditation is a simple and effective way to steady the mind, give clarity to your thoughts and help you to manage stress. This could be in the form of a structured ‘body scan’ or a guided meditation using an app, or simply practising breathing techniques. It’s the most effective method I have found for calming my overactive brain enough to allow myself to rest.

Rest isn’t a luxury – it’s a necessity.

The cause of my recent health scare, which landed me in hospital with heart problems, was most likely stress. It has been a huge wake up call for me. It has made me realise I need to look after myself more, listen to my body and prioritise rest and relaxation within my life. It is so easy to see rest as an afterthought or an inconvenience – it gets in the way of us doing the things we need or want to do. But rest is a essential part of our lives, without it our physical health and mental wellbeing suffer.

So the next time you beat yourself up for having a “rest day” remind yourself you are giving your body and mind time to heal. Try not to worry about all the things on your to do list and concentrate on what you need right now. Think of rest as the medicine your body needs to repair itself, and most importantly – be kind to yourself. Take care x

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What is Atrial fibrillation?

Symptoms, Diagnosis and Treatments.

I was diagnosed with Atrial fibrillation (AF) about 3 months ago, although I have been experiencing symptoms for a few years now. As I often suffer from palpitations, and I’m used to new and often quite scary symptoms appearing, I wrongly ignored my heart problems. When you have a chronic illness like ME/CFS, which throws a myriad of obscure symptoms at you, it’s easy just to assume new symptoms are part of it.

Also, when you are told for years that you are a hypochondriac and ‘it’s all in your head’ you are very reluctant to ask for help from medical professionals. I’ve been told most my life that my physical symptoms are caused by my anxiety, and you get to a point where you believe this. So, rather than seek help immediately, I waited until these new symptoms became unbearable before asking for help. But it’s not worth the risk, please don’t make the same mistake as me.

Even though both my parents also have AF, before my diagnosis I knew very little about the condition. I have since researched a lot about it, so I thought I would write a post about this heart condition. What are the symptoms? How is atrial fibrillation diagnosed? and what are the possible treatments?

What is Atrial Fibrillation?

Atrial fibrillation (AF) is an abnormal heart rhythm that happens when electrical impulses fire off from different places in the atria (the top chambers of the heart) in a disorganised way. This causes the atria to twitch, and is felt as an irregular heartbeat or pulse. Atrial fibrillation is also a major cause of stroke.

In AF, the heart rate is irregular and can sometimes be very fast. In some cases, it can be considerably higher than 100 beats a minute.

This can cause problems including dizziness, shortness of breath and tiredness. You may be aware of noticeable heart palpitations, where your heart feels like it’s pounding, fluttering or beating irregularly, often for a few seconds or, in some cases, a few minutes.   

What are the symptoms?
The most obvious symptom of AF is heart palpitations. As well as an irregular heartbeat, your heart may also beat very fast.

Other symptoms you may experience include:

  • tiredness and being less able to exercise
  • breathlessness
  • feeling faint or lightheaded
  • chest pain
  • The way the heart beats in atrial fibrillation reduces the heart’s performance and efficiency. This can lead to low blood pressure (hypotension) and heart failure.

Sometimes AF does not cause any symptoms and a person who has it is completely unaware that their heart rate is irregular.

What it feels like to experience the symptoms of atrial fibrillation.

I personally experience all of the above symptoms. My heart thumps so hard in my chest I can not only feel it, I can hear it. I feel like I’m constantly in motion. When I’m lying in bed I feel like I’m on a water bed. My chest gets so tight, I have to force myself to breathe. And the dizziness gets so bad I struggle to sit up or walk to the bathroom.

Now, I don’t know how much of this is caused by ME/CFS and how much is atrial fibrillation, but hopefully with treatment for my AF these symptoms will improve.

Because the symptoms mimic anxiety and are similar to a lot of the symptoms I experience with ME/CFS, it was hard for me to pinpoint them as new symptoms triggered by heart problems. This is one of the reasons I hesitated contacting my GP about them.

The combination of these symptoms causes a very “odd” sensation. You know when you are on a roller coaster and you go down a big dip or do a loop, you feel like your stomach drops, your heart goes into your mouth and it takes your breath away – it feels like that all the time. I constantly feel uneasy, it mimics anxiety, that feeling of impending doom in the pit of your stomach.

What causes atrial fibrillation?

The exact cause of atrial fibrillation is unknown, but it’s more common with age and affects certain groups of people more than others.

Atrial fibrillation is common in people with other heart conditions. It’s also associated with other medical conditions, including:

  • An overactive thyroid gland.
  • Pneumonia.
  • Asthma.
  • Chronic obstructive pulmonary disease (COPD).
  • Lung cancer
  • Diabetes
  • Pulmonary embolism

I have no idea what caused my AF as I don’t fit into any of the above categories. I believe the symptoms started after a neck injury a few years ago, but I don’t know this for sure. However, the fact that both my parents have AF puts me at greater risk.

What can trigger an episode of atrial fibrillation?

Although I don’t know the cause, I am very aware of what aggravates my symptoms and triggers an episode of atrial fibrillation.

My Triggers:

  • Stress.
  • Caffeine.
  • Hot and humid weather.

Other common triggers include:

  • Drinking excessive amounts of alcohol, particularly binge drinking.
  • Being overweight.
  • Drinking lots of caffeine, such as tea, coffee or energy drinks.
  • Taking illegal drugs, particularly amphetamines or cocaine
  • Smoking

How is atrial fibrillation diagnosed?

I personally had a particularly bad episode which led to a diagnosis. The heart can often go in and out of AF and patients can be aware of these changes. I believe my heart has been doing this for years, but it had always corrected the rhythm by itself. This time, however, this didn’t happen. The longer this episode lasted, the more rapid my heart rate became, and the more severe the other symptoms, like dizziness, palpitations, chest tightness, difficulty breathing, became. After speaking to my GP an ambulance was called. The paramedics carried out an ECG which detected atrial fibrillation. My ECG also showed another abnormality, so I was admitted to hospital.

Monitor your pulse:

The first step in diagnosing AF is for you to monitor your own heart rate. This can be done by firmly place the index and middle finger of your right hand on your left wrist, at the base of the thumb (between the wrist and the tendon attached to the thumb) count the number of beats for 60 seconds. Also note whether you heart beat feels irregular.

I personally have a fitness tracker which monitors my heart rate. This was extremely useful in diagnosing my atrial fibrillation, it also alerted me to the fact something was wrong in addition to my normal symptoms.

Also, monitor any other symptoms you may be experiencing. It’s a good idea to keep a diary of symptoms along with your heart rate which you can present to your GP.

When to see your GP.

If your heart rate is consistently above 100 (particularly if you’re experiencing other symptoms of atrial fibrillation) visit your GP. Also if you are experiencing chest pain, see your GP immediately.

If atrial fibrillation is suspected, your GP may give you an electrocardiogram (ECG) and refer you to a heart specialist (cardiologist) for further tests. An ECG is a test that records your heart’s rhythm and electrical activity and it’s the most common way of diagnosing AF. It’s usually carried out in a hospital or GP surgery, takes about 5 minutes, and is painless.

Additional tests.

Once you are referred to a cardiologist further tests may be carried out which may include:

  • an echocardiogram – an ultrasound scan of the heart, which can help identify any other heart-related problems; it’s used to assess the structure and function of the heart and valves.
  • a chest X-ray – which can help identify any lung problems that may be causing atrial fibrillation.
  • blood tests – which can highlight anaemia, problems with kidney function, or an overactive thyroid gland (hyperthyroidism).

I have had all of the above and I can confirm they are straightforward and (mostly) painless

What treatments are available?

The first step is to try to find if there is a cause of the atrial fibrillation. If a cause can be identified, you may only need treatment for this. For example, if you have an overactive thyroid gland (hyperthyroidism), medication to treat it may also cure atrial fibrillation.

If no underlying cause can be found, the treatment options are:

  • medicines to reduce the risk of a stroke
  • medicines to control atrial fibrillation
  • cardioversion (electric shock treatment)
  • catheter ablation
  • having a pacemaker fitted.

A variety of medicines are available to restore normal heart rhythm and control the rate of the heartbeat. Also, due to the way the heart beats in atrial fibrillation means there’s a risk of blood clots forming in the heart chambers. If these enter the bloodstream, they can cause a stroke. Therefore an anticoagulant (blood thinner) is often prescribed.

In my case, a cause was not found. Since my hospital stay 3 months ago, I have been on a blood thinner and a beta blocker. But to be honest, I haven’t noticed much improvement in my AF symptoms, although my heart rate is not quite so rapid.

Cardioversion and other procedures.

My cardiologist has recommended I have a procedure called, cardioversion. I have been on the waiting list for this for 3 months now.

Cardioversion involves giving the heart a controlled electric shock to try to restore a normal rhythm. Cardioversion is usually carried out in hospital so that the heart can be carefully monitored.

Other options available if medication and cardioversion are not effective, are:

  • Catheter ablation. A procedure that very carefully destroys the diseased area of your heart and interrupts abnormal electrical circuits.
  • Pacemaker. A small battery-operated device that’s implanted in your chest, just below your collarbone. It’s usually used to stop your heart beating too slowly, but in atrial fibrillation it may be used to help your heart beat regularly.

Wish me luck!

I’m hoping that after the cardioversion, if it’s successful, I will notice a dramatic decrease in my symptoms, and improvement in my health. I have no idea how much of my fatigue, palpitations and dizziness are actually caused by the AF, and not ME/CFS as I originally thought. Unfortunately success is not guaranteed. My Dad has been through two cardioversion procedure and neither were successful. But I live in hope.

My cardioversion procedure is booked for the 12th of October – wish me luck!

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Pacing is a simple concept. So why do I find it so hard?


Living with a chronic illness like ME/CFS creates many challenges. Along with the multitude of symptoms, we also have to learn to adapt to the restrictions placed on our lives and to manage our limited energy levels. The term “pacing” crops up repeatedly – “listen to your body and pace yourself”. It’s a technique designed to help us manage our complex symptoms and restricted energy levels. But what if you find pacing challenging? What if your body and mind refuse to let you rest? This is the problem I face and I’ve been looking for ways to address this.

My poor body has been throwing out very clear signs that I’ve been overdoing it recently. Tremors, palpitations, migraines, muscle spasms, cold sores, headaches, increased pain, to name a few. My body is screaming at me to rest. I’m very in tune with my body and I’m fully aware that I need to rest. So why do I find it so hard?

For those of you who haven’t come across the term “pacing” let me take a moment to explain what it means.

What is “Pacing”?

The core principle behind pacing is that you work within your energy envelope. When you have a chronic illness your energy levels are limited and simple tasks can be exhausting. Therefore it’s important to manage the limited energy you have by spreading out tasks throughout the day or even breaking down bigger tasks to smaller ones, taking regular rest breaks, and most importantly listening to your body.

It’s recommended that you rest before you reach you energy limit. This means stopping an activity you enjoy or one you’ve been meaning to do for days or weeks, before you get exhausted, even if you feel able to complete it. This is the part I find frustrating and hard to grasp.

Why I find pacing so hard.

I’ve never been a controlled and sensible person when it comes to my energy levels. Even when I was relatively well I would often have periods where I would push the boundaries of what my body and mind could take. Telling myself to stop and rest when I’m feeling relatively “ok” is an alien concept and my mind refuses to listen. “Just 5 more minutes”, “Just one more paragraph”, “I will finish this, then I will rest”, are all excuses my mind tells me.

But this is not surprising because the clear message portrayed in the media and enforced by society as a whole is to “push yourself beyond your limits”. Resting is seen as being lazy and we are encouraged to test our boundaries and constantly strive to do more. This is a message that can be damaging to those who suffer with a chronic illness.

See, the thing is with a chronic illness like ME/CFS we can often push ourselves to complete tasks but the payback is a bitch. We suffer, sometimes severe, deterioration in our health and increased symptoms if we push ourselves too far. The crash following increased activity can last for hours, days, weeks or even months. This is why pacing is so important, the stakes are so high.

This, to me, is a such a cruel aspect of ME/CFS and also an area which is the most misunderstood by people outside the ME/CFS community. People will see us carrying out tasks and assume we are ok, but they don’t see the consequences of our actions.

I think it would be easier if I COULDN’T physically do something, rather than being able to push myself to do something only to cause myself harm. It’s a constant battle between my body and my mind. It’s a balancing act between what I want to achieve in life and the limitations my body puts on these aspirations. I spend so much time weighing up each activity; Is it worth the payback? How much energy will it use up? Are there more important things I need to save my energy for?

And here’s the kicker; you may complete the same task multiple times over years and the payback each time is different, sometimes mild, sometimes severe. Just because you could do that task last week, doesn’t mean you can today. We never really know how our bodies are going to react.

But resting is boring!

When I have lots of exciting projects on the go, or I have friends visiting or my loved ones need me, I find it almost impossible to calm my mind and put everything aside to rest. I find it difficult to switch my brain off and concentrate on giving my body the time it needs to heal. And the physical symptoms of my illness like pain, muscle spasms and palpitations create another hurdle. My body is in a constant agitated state.

But it’s not just that. Resting is boring! There are so many other things I want to or need to be doing. I know rest is vital to give my body and mind time to recharge and renew, but it feels like such a waste of my life.

It’s not your fault you are ill.

If you also find pacing hard please don’t beat yourself up about it. Our minds and bodies are designed to be kept busy. We crave activity and interaction. I used to blame myself when my health deteriorated as it was often because I had pushed myself too far. But this isn’t a weakness and it’s not my fault my body is broken, just the same as it’s not your fault. Try to work with what you have and rest when you can. The added guilt and frustration triggered when we blame ourselves just adds to the exhaustion we feel, and the severity of the “crash” we experience.

How do you pace yourself?

Just because I find pacing difficult doesn’t mean I don’t try. I know very well the principles of pacing and what I “should” be doing. I just struggle to find the motivation to rest. I find “doing” easier than resting. Pacing and resting take discipline.

I do however find mindfulness meditation a useful tool when I want to calm my mind and focus on my wellbeing. Meditation is a simple and effective way to steady the mind, give clarity to your thoughts and help you to manage stress. This could be in the form of a structured ‘body scan’ or a guided meditation using an app, or simply practising breathing techniques. It’s the most effective method I have found for calming my overactive brain enough to allow myself to rest.

Practical pacing tips from fellow spoonie bloggers.

I could talk you through standard pacing techniques but as I’m crap at pacing myself it seems a bit hypocritical. So instead here are some links to excellent articles written by fellow spoonie bloggers, that give practical advice and simple techniques that will hopefully assist you in your resting life.

10 Top tips for pacing when you have fibromyalgia. By February Stars.

10 Top Tips For Pacing When You Have Fibromyalgia

To do or not to do? That is the real question. By My Med Musings.

The Importance of pacing and fibromyalgia. By Counting my spoons.

The Importance of Pacing and Fibromyalgia

Free ebook download including practical pacing techniques. Take Back Your Life & The Fibromyalgia Coach. By Tami Stackelhouse

You may also find this article usefulPacing with Fibromyalgia & Chronic Fatigue Syndrome.

But the truth is simple; I’m just doing too much and my health is suffering due to this. I need to try and back away from the stresses of life and prioritise rest and pacing. I’m fully aware of the importance of rest and I know many techniques that help with pacing, but I’m not giving myself time to practice them.

Therefore, I’m going to be taking a bit of time off from my blog. It could just be a few days or maybe a couple of weeks. Knowing me I won’t be able to stay away for long but please bear with me while I take the time to heal. Take care x

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“You don’t look sick!”

When you live with an invisible chronic illness there’s a phrase you hear a lot; “You don’t look sick!”. It’s so common that many of us don’t even bat an eyelid when these words are uttered. But whether it’s from a well meaning friend, a doctor or a complete stranger, it’s often hard not to question these 4 simple words. Are they questioning the validity of my illness? Are they challenging me to prove how ill I am? Are they accusing me of faking it? Or are they just simply making an honest observation?

On top of this, we also have to contend with complete strangers judging us on our outward appearance and our need to use mobility aids or services designed to assist disabled living, when we don’t look disabled. These confrontations can sometimes be aggressive and intimidating.

But the truth is, the symptoms of the majority of chronic illnesses do not present themselves physically.  My pain is not etched in ink on my skin. My exhaustion doesn’t cause a physical deformity. And I don’t turn bright green when I’m so dizzy I feel like I’m going to pass out.

These types of comments and judgmental behaviours have happened to me more times than I care to remember, but they still shock me sometimes and I never really know how to respond. Most of the time I brush them off and it doesn’t bother me, but there are times when I get angry and frustrated. But how should I respond?

I recently had a new dentist visit me at home (I know I’m very lucky to have this service in my area) He hadn’t met me before, but he had obviously read my file and, the fact I needed a home visit rather than treatment in the clinic told him how poor my health was.

The first thing he said when he walked through the door was; “I have to say, you look really well.” (said in a very patronising and accusing manner).

Now, to someone with good health this is compliment, but to someone with a chronic, invisible illness, statements like this come across as; “You don’t look sick” or “I don’t believe you are as sick as you make out” or, more bluntly; “I think you are faking it”. Am I being too sensitive? Maybe, but you hear these statements a lot when you have an invisible illness, and sometimes it’s hard not to take them personally.

We often get accused of faking it. Like when people judge us for using a wheelchair, even though we can walk. Or when we use a blue badge and a disabled parking spot, even though we don’t have a visible disability. Or when we use a disabled toilet, even though we don’t look disabled. Or when people see us on our “good days” and we appear to function “normally”, yet they do not see us on our “bad days” when we are too sick to even leave our beds. We constantly feel like we are having to prove how sick we are, and justify our need to use facilities and services designed to assist people with disabilities or disabling illnesses.

The fact is, the majority of people that use wheelchairs are not paralysed. We can walk, but we use wheelchairs as a mobility aid. Walking distances are often exhausting and painful. Mobility aids make our life easier and less painful, but they also help us gain the independence we crave and we deserve.

So why are so many people still shocked and often judgemental when they discover this fact? I believe it’s because of how disabled people, and wheelchair users in particular, are portrayed on TV and in films. Maybe a disability needs to be physically “seen” for viewers to believe in the character? Whatever the reason I know it needs to change. “Real” disabled people need to be represented in the media for the general public to adapt their views on what constitutes as a disability.

So how do you reply to comments like this? I was stunned into silence for a few moments, and then I replied calmly; “Well I guess that’s why it’s called an invisible illness”

These comments are not always spoken in malice. Sometimes they are born from ignorance. It’s one of the main reasons why I fight so hard to educate and to raise awareness about invisible illnesses.

Please remember; people have illnesses and disabilities that can’t be easily seen, but it doesn’t make them any less real. Please don’t judge someone on their outward physical appearance, you have no idea what is going on internally within their body and mind.

And most importantly; The most powerful words you can say to someone with an invisible illness are; “I believe you” Take care x

September is invisible illness awareness month. What frustrating or rude comments have people said to you because your illness is invisible? Do you find people judge you because they cannot see your disability?

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How the government’s welfare reforms almost cost me my life.

Foreword: I recently read an article about the full extent of the increased attempted suicide rates which coincided with the introduction of the government’s benefit reforms and ESA. The article stated that:

“Staggering” new figures show that the proportion of people claiming the main out-of-work disability benefit who have attempted suicide doubled between 2007 and 2014.”

It’s no coincidence that in 2008 incapacity benefit (IB) began to be replaced by employment and support allowance (ESA) with eligibility tested by the WCA.

One leading psychologist described the figures this week as showing “the greatest increase in suicide rates for any population that I can recall in the literature”.

If you would like to read about these latest figures please click here. 

Reading these disturbing figures compelled me to tell my story.

Here’s my story:

I almost became a statistic – just one more suicide triggered by the incompetence surrounding the implementation and assessment process of the health benefit Employment support allowance (ESA). I was assessed as 100% fit to work, even though I had moderate ME/CFS and the full support of my GP. I didn’t even receive 1 point on the assessment, which was carried out by a nurse who hadn’t even heard of ME/CFS. I had to appeal the decision. They messed me about so much, it took 2 years and multiple forms, evidence, phone calls, letters and appointments to get the decision overturned. I went from being able to walk to the local shops and “care” for myself, to being virtually bed bound and requiring care assistance daily, and I still haven’t recovered 5 years later. People don’t realise how physically and mentally exhausting the whole process is- it broke me. I lost my independence, my health and my will to live. We nearly lost our home and the dramatic deterioration in my health, along with the constant pain and the desperation of our situation caused me to become suicidal. I was in a suicidal state for 6 months solid- every day. I wouldn’t be here today if it wasn’t for the love and support from my husband, family and friends. But I was one of the lucky ones.

What went wrong?

To be honest, it was a massive cock up from the beginning. The building where the assessment was carried out wasn’t accessible. The office was on the 2nd floor and although there was a lift I wouldn’t have been able to exit the building in an emergency. As I’ve stated, the person carrying out the assessment was only a nurse, not a doctor, and she hadn’t even heard of the main medical condition I suffer from, ME/CFS. The so-called “medical assessment” was just a bunch of questions followed by a simple physical assessment including; “Can you lift your arms” which in no way represented a physical examination or took into account the many disabling symptoms associated with ME/CFS. I provided evidence from my GP which wasn’t even taken into account during the whole assessment process.

So, the outcome was; I was assessed as 100% fit to work. For those of you who are unaware of the “marking” system; you get 1 point for every area where you fall within the category they set as adding to your inability to work. You have to score a certain amount of points to be eligible for ESA and even then you may still be required to attend “back to work” interviews. There were many mistakes on the assessment report, I had been misquoted and the assessor claimed to have said things which were never discussed in the medical assessment, even my medical conditions were wrongly noted.

The appeals process.

You can appeal your decision, which is what I decided to do, but there is no “help” available to guide applicants through the complicated and tedious process. I attempted to get help from the Citizens advice bureaux (CAB) but they stated they had no funding for this so they refused to help. Funding had also just been cut on legal aid provisions so I had nowhere to turn for advice. I had to complete the complicated form on my own, at a time when my health was already deteriorating, and also provide evidence to support my appeal. It was very common for appeals to go to tribunal, which is very similar to an official court hearing – and a scary prospect. As you can imagine my anxiety levels were extremely high not just because I was afraid I would lose my home but also at the thought of having to attend a tribunal and present my case.

12 months after submitting my appeal I still hadn’t received an answer or a tribunal date. I had rung the Department of work and pensions (DWP) multiple times over this period but no one could give me an update. Each time I had to wait in a queue for 40+ minutes and each time I was spoken to like an “inconvenience”. So I decided to submit a formal complaint, maybe then I would be taken seriously.

It’s not just the financial burden placed on your life that causes stress, or the waiting, you are also made to feel like you are “faking” it. You are accused of attempting to defraud the government, trying to claim benefits you are not entitled to. The media portrays claimants as “lazy, workshy scroungers. But I wanted so badly to work, just my body wouldn’t let me. Up until becoming sick I had always been independent and financially secure. I’ve always worked hard and saved my money.

The outcome of my appeal.

My letter of complaint worked and I finally got an answer 16 months after my appeal started. The good news was my appeal had been successful and I wouldn’t have to go to a tribunal. Why had it taken so long? Incompetence! 8 months prior to finding out my appeal had been successful, a staff member at the DWP had reviewed my case and overturned the decision. BUT had forgotten to action the decision. 8 months of stress, 8 months of panicking that I would have to go through the stress of a tribunal, 8 months of financial difficulty, 8 months of phone calls where no one had picked up on this mistake, 8 months of my health deteriorating. And the mistake had only been picked up because the complaints department reviewed my case.

There are two levels of ESA; work related activity group (WRAG) and support group. When my decision was finally overturned I was placed in the WRAG which meant I had to attend “back to work” reviews. I asked at the time why I hadn’t been placed in the support group and the reply was; “You basically have to be on your deathbed to be placed there”

Yet another obstacle.

But here’s the kicker; the government had just decided that if you fall within the ESA contribution based WRAG (which I did) you could only receive ESA for 12 months, then it stopped. Because it had taken them so long to process my appeal, I had already exceeded the 12 months, so my money was stopped and there was nothing to replace it. All that fighting for nothing! No matter how many people I spoke to I could not get any straight answers; how am I supposed to pay my bills? What benefit replaces the ESA after the 12 month period is up- surely I can’t be expected to suddenly “live” without any money?, my situation hadn’t changed. Why does it stop after 12 months, my expenditure hasn’t suddenly stopped? It was suggested I had to “sign on” for Job seekers allowance but you have to sign to say you are “fit for work” to receive this benefit and my records stated I was unfit to work, so I would be committing fraud by signing on. It was a joke, no one actually knew what they were doing and no one at the DWP was willing to help me.

So, here comes the next stage in this debacle. I was very lucky to be referred to a law charity by a friend. This charity specialised in helping benefit claimants with the complicated process and the incompetence surrounding the benefits system. The problem was, by now I was too ill to attend the meetings booked with the charity. Months went by before I finally found the strength to attend. I was advised I could appeal the decision to be placed in the WRAG but it had already passed the time allocated to appeal. I was told that the 12 month limit on payments doesn’t apply to the “support group” so if we could successfully appeal this decision I would start to receive ESA benefits again – something the DWP had conveniently omitted to tell me. I was also told that I should never have been discouraged from appealing to be placed in the support group because “You basically have to be on your deathbed to be placed there”. I didn’t have any fight left in me and I was just too ill, but what choice did I have? I needed to pay the bills and mortgage.

It was a long and exhausting battle, but with the help of the law charity I appealed the decision and won. My health had deteriorated so badly at this stage that the support group was definitely the appropriate group for me. DWP accepted that they had failed me and made mistakes. I was also encouraged to apply for disability living allowance (DLA – which has now been replaced by PIP), and my claim was successful. I will be forever grateful for the help I received from this charity, but sadly they had to close due to their funding being removed – yet another victim of the current conservative government’s austerity measures. The advisor at the law charity even got a formal apology for me from the DWP, but sadly the damage was done. I went from being ill but independent (to a degree), to being virtually bed bound and reliant on others for even my basic needs.

Desperation set in.

The sudden and severe deterioration in my health was devastating for me. Losing my independence and my ability to care for myself at 38 years old was soul destroying. Added to that, I was in constant pain and I couldn’t see a way out of the hell I was in. I wasn’t living, I was battling to survive each day. Understandable I became angry, depressed and suicidal. I spent 6 months of my life in this state, suicidal every day. I desperately needed the pain to stop and I couldn’t see any other option. I called out for help but due to cuts in the NHS I was abandoned both by the mental health team and the NHS as a whole. Apparently I was too physically unwell to undergo treatment for my mental health issues, but at the same time I had my GP and the hospital tell me all my symptoms were caused by my mental ill-health. I wish politicians who made decision that destroy people’s lives could actually experience what they have to go through, or even just witness the devastation caused by their actions.

The irony behind the whole situation is that I’m now costing the UK taxpayer at least triple what I did before my health benefits were reassessed. Prior to the government’s “cost cutting” health benefit reforms I was just receiving incapacity benefit and, although it was a struggle, along with my husband’s wage we managed to pay the bills and mortgage. I now receive ESA and PIP, and due to the level of our income the government also pays for all my care costs.

The people responsible must be held accountable.

I firmly believe that the incompetence surrounding the benefits system reform and the way I was treated by the DWP was the main contributing factor to the severe deterioration in my health, and the reason I became virtually bed bound 5 years ago – a state in which I still find myself today. Stress is a big trigger for all my symptoms including pain, fatigue, insomnia, anxiety, migraines and it’s damn exhausting. The stress caused by this horrific two year ordeal was immense. I was lucky, I had the support, both emotionally and financially, from loved ones. But thousands of people aren’t so lucky. Potentially thousands of people have taken their lives due to similar experiences to my own. I’m not sure we will ever know the true extent of the loss of life caused by the government’s benefit reforms but the sheer incompetence surrounding ESA assessments must be addressed and the people responsible must be held accountable.

Unfortunately people are still suffering. With the more recent implementation of “universal credit” and the severe cuts to services and charities which assist the most vulnerable in society, it doesn’t look like the situation is going to improve any time soon. How many more lives have to be lost before people take notice and a fair benefits process is implemented?

Do you have a similar horror story to share? What are you experiences with the benefits system in the UK, good or bad?

For more personal stories, reviews, news, inspirational quotes and in-depth discussion, please head over to my Facebook page.

Here is another article that highlights the sheer number of deaths registered while claimants were receiving ESA.

Trying to rationalise the irrational.

Foreword: My first draft of this post was a jumbled mess of incoherent thoughts. It was quite enlightening to read back as it was a true reflection of how my mind reacts when I’m anxious. It is so hard to organise your thoughts into an intelligible, clear and ordered format when you are anxious – it’s like trying to control a group of small children at a party when they are all running around in different directions.

Living with anxiety.

For some reason my anxiety has been really high the past couple of days. I have completely lost my confidence and I’m doubting everything I say and do. Now, this isn’t something new, I have lived with anxiety all my life and should be used to it by now, but it still frustrates me. Rather than let these feelings consume me I decided to write about them in an attempt to understand what has happened to trigger these feelings. I have an analytical mind so I want to try and figure out why I’m so anxious at the moment; what has caused this?, what are my triggers? By finding this out I may be able to avoid my triggers and keep my anxiety at a more manageable level in the future. Maybe you will be able to relate to these triggers too.

When my health deteriorates, and this applies to my physical health too, I become obsessed with finding out the reason why. It’s important for me to attribute the deterioration to an act so I can avoid it in the future, it’s my way of explaining or rationalising something which is often irrational. With an unpredictable chronic illness like ME/CFS, where symptoms regularly fluctuate for no reason, this approach can be counterproductive and lead to frustration. But my brain does not shut up, my thoughts spiral trying to make sense of the decline in my health. This is how my brain is wired so I have learnt to accept it.

Of course, we all know how unpredictable anxiety can be. It may be that I just have to accept that some things I can’t control and instead of trying to figure out why, I may just need to find ways to be kind to myself when I’m this anxious. But is it possible to rationalise the irrational?

How anxiety makes me feel and react

Firstly, is important to establish how anxiety makes me feel and react.

When my anxiety levels are high I doubt myself – I doubt everything I do and say. Anxiety steals my confidence, even my ability to carry out familiar tasks which are like second nature. I often find myself irritable, short tempered, angry and confused. I become really needy and I need constant reassurance. My mind becomes so overactive, racing from one negative thought to another – it doesn’t stop. One question triggers ten more; it’s like having a 2 year old child in my head constantly asking “But why?”

I feel like I’m upsetting and annoying everyone; maybe I am?. Did I say the right thing? Did my comment upset someone? Do I sound bossy? Was I too abrupt? I overcompensate by being overly nice and I apologise… a lot! I’m jittery – constantly on edge. My body vibrates with the adrenaline coursing through me. I struggle to sleep, and the few minutes of shut eye I manage to get, are filled with anxious, scary nightmares.

I always find myself in a reflective mood when I’m anxious or depressed. It’s at this time that I want to write about my feelings and thoughts, but it’s also when I am most exhausted and I don’t have the energy to write. This causes a lot of frustration as I want to rest but my mind will not let me.

What has been different recently?

After giving myself time to think about possible triggers and to establish what has been different recently, I have realised how busy I have been. I sometimes forget how physically ill I am (or maybe sometimes I just stubbornly refuse to accept my limitations). My physical health has been deteriorating and this makes it harder for me to cope with the challenges my mental health places on me.

Also, writing a blog leaves you open to criticism and most of the time I deal with this in a confident manner, I accept you can’t please everyone and not everyone will agree with my thoughts and opinions. But when my anxiety levels are high I start to doubt myself and begin to belief what people are saying. But it’s ok for people to disagree, as long as that disagreement doesn’t turn into a personal attack. Yes, I have let a couple of trolls knock my confidence when I would normally just ignore them – I need to learn how to choose my battles, some people are not worth the energy.

I love being busy, I love interacting with people, I love the excitement of new projects, I love learning and educating myself, I thrive on progress. I have so many ideas and so much I want to do. But the truth is, I am not physically well enough to take on so much. I need to prioritise, and work within my limitations. I need to be more disciplined.

My anxiety triggers:

The cause of my most recent increased anxiety and panic attacks are common triggers that I’m very familiar with:

1. Stress – Stress had always been my biggest trigger. My recent heart problems and hospital visit, along with the prolonged hot and humid weather have contributed to a rise in my stress levels. Also, my carer was on holiday for 2 weeks.

2. Overexertion. I’ve been trying to do too much, this causes my brain to become overactive and my body to weaken. My hospital stay with regards to my heart problem and increased work on my blog are “extra” activities my body and mind aren’t used to.

3. Exhaustion. I’ve been overdoing it on my blog, doing a lot of awareness campaigning but also my hospital visit and my regular carer being on holiday have added to my exhaustion. Exhaustion causes palpitations which mimic panic attacks.

4. Change in my routine. My normal, regular carer was on holiday for 2 weeks so I had new carers everyday. This was exhausting, stressful and unpredictable. When my familiar, well practised routine is disrupted, I panic. Change brings with it new challenges which my foggy brain finds exhausting.

5. Lack of sleep. I haven’t been sleeping very well due to the prolonged hot and humid weather.

6. Hormones. My hormones have always affected my mood. This has been further exacerbated by excessive bleeding due to blood thinners I’m now taking.

7. Confrontation. I don’t deal with confrontation very well, and there has been quite a lot of it recently, with trolls online and disagreements with my care agency. Confrontation adds to my stress levels, it’s exhausting for me and I find myself replaying the incident multiple times, often lasting hours.

Some of these triggers I have no control over and so I will just have to learn to accept them, and adapt where possible. And,of course, some of my anxiety doesn’t have a “trigger” – it’s irrational and appears from nowhere. But some triggers I can influence by making positive changes in my life, which I plan to do.

So, what steps can I take to improve my health?

The truth is, I have just been doing too much.  Rather than pacing myself and listening to the signs my body and mind have been sending me, I have ploughed on. I have lots going on at the moment but it’s mostly positive stuff and I always find it hard to pace myself when I am excited about new projects. My mental health is intertwined with my physical health – one directly affects the other, so the more exhausted and in pain I am, the more anxious I am.

1. Rest.

The most constructive thing I can do right now, is to back off for a while – let myself rest, if my overactive mind will allow me too. Being tired makes it harder for me to cope with my anxiety when it does appear, I struggle to think clearly so my anxiety spirals out of control.

2. Find time to do things I enjoy.

I’m going to try to incorporate some fun into my life, it’s a great way to reduce stress. It’s been a bit “full on” with my blog, writing, helping others in support groups – I need to concentrate more on myself.

3. Practice mindfulness meditation 

I have let my mindfulness meditation slide a bit, so I’m going to schedule time each day for that, it really does calm me so it’s important. Mindfulness also helps me find constructive ways to cope with stress and it helps me gain some much needed perspective on problematic situations. A valuable lesson I have learnt through mindfulness is that, you don’t have to obsess over or react to every negative thought you have, you can just let thoughts come and go.

4. Be selective with my battles.

I am also going to be more selective with the battles I choose to fight. Some battles are just not worth my energy and time.

5. Accept some things are out of my control.

Life is unpredictable and so is my physical health and my anxiety. By trying to control what is out of my control I’m only adding to my frustration and stress.

6. Monitor my heart rate.

I recently bought a fitness tracker to monitor my heart rate and sleep patterns. What I’ve discovered is that my anxiety increases when my heart rate increases, even if anxiety wasn’t the initial cause of the rapid heart rate. Palpitations caused by physical exhaustion actually trigger my anxiety and pain attacks. I’ve also discovered that even basic activities like brushing my teeth cause a dramatic increase in my heart rate (from 60 bpm to 140 bpm) So now when I feel anxious, the first thing I do is check my heart rate. If it’s high, I work to reduce it through concentrating on my breathing, meditation or by resting. This simple piece of knowledge has really helped me understand the relationship between my physical health and my anxiety, and has helped me manage both more effectively.

Anxiety can be unpredictable and irrational but we can take positive steps to improve our health, which in turn will help us cope with anxiety when it rears its ugly head. If you too are experiencing heightened anxiety, please try to take some time out from your busy life to concentrate on your wellbeing. For years I tried to avoid my anxiety by keeping busy. I was active 24/7 trying to distract myself from the negative voices in my head – to some extent I still do this now. This approach only leads to physical exhaustion and increased anxiety in the long run. I know the phrase “Be kind to yourself” is overused, but it really is important. Show yourself some compassion and forgive yourself for your misgivings and perceived failures. Find time to do what you enjoy and take time to rest and recharge. Take care x.

Do any of my anxiety triggers sound familiar? What are your triggers? What coping strategies do you have?

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Fear of the unknown – leaving my protective cocoon.

 

I have a hospital appointment coming up. It’s for a painless, straightforward heart scan (Echocardiogram) as a follow-up to my recent heart problems. Now this would be a simple activity for a healthy, able-bodied person but for someone with a disabling chronic illness like ME/CFS it becomes a huge undertaking. Added to the physical stress involved with such a task, is the mental strain placed on my body from the amount of planning and problem solving I have to do, and the anxiety this causes.

Routine is vital for someone who suffers from cognitive problems caused by ME/CFS and also for people who suffer from anxiety. Healthy individuals cannot comprehend the stress and exhaustion triggered by attempting new activities outside our normal routine. When I leave the protective cocoon of my bedroom I enter a world which is out of my control. My room has been adapted around my illness and the limitations placed on me. But when I leave this safe environment I encounter so many obstacles and scenarios which can damage my health.

When you suffer from a serious chronic physical illness, new situations bring with them a lot of obstacles. Change, however small, can trigger a worsening of our symptoms like pain and fatigue. Basic tasks are exhausting for someone with ME/CFS so the added physical activity of travelling to hospital and having a heart scan, is like a healthy person running a marathon. One of the main symptoms of ME/CFS, called post exertional malaise (PEM), means that even once I return to my well-adapted environment I suffer the consequences of this new activity, often for days or weeks. And the fear of not knowing how severe the crash will be or how long it will last, adds to my apprehension.

Not only is the outside world out of my control, it also harms me. The world is a busy, smelly, noisy place. When I venture outside I am met with an onslaught on my senses – a sensory overload. It feels like a million people are shouting at me from all directions. It’s not just painful and exhausting – it’s terrifying.

Added to this, I have my anxiety to contend with. When you suffer from anxiety, routine is your friend. Even the notion of change can trigger a panic attack. When faced with a new situation my mind races out of control trying to find solutions to every possible problem and outcome that may occur due to the change. When you have a chronic illness the amount of possible problems multiples, therefore anxiety levels also multiply.

I have to plan every little detail. I have to think about every possible scenario and “what-if” to try to minimise the damage caused to my health. It’s inevitable that attending this hospital appointment will cause increased pain and fatigue, so it’s not just my anxiety at play here. There is a real danger that this simple activity will trigger a crash that could possibly last for days or weeks. But, if I’m honest, my anxiety also plays a big part the deterioration of my health with situations like this. This mental stress is just as exhausting as physical activity

So, I spend the days and weeks running up to hospital appointments planning every little detail. I ring the department I’m visiting and explain my situation. I have to arrange hospital transport because I cannot sit up in a car. I pack my hospital bag including sunglasses, ear defenders and medication. I have to plan for my return and rearrange my bedroom accordingly. I have to plan for the inevitable crash that will follow and the limitations this will place on me on the days following the appointment. I have to try my best to rest on the run-up to the appointment in an attempt to conserve some energy.

And then there’s the seemingly endless amounts of “what-ifs” I feel the need to plan for. What if hospital transport doesn’t turn up? What if they can’t find my key safe to let themselves in? What if my health is so bad I’m unable to communicate properly? What if there are complications and I need to stay? What if they decide to run more tests? What if I get so dizzy I pass out? What if my appointment is late and hospital transport decide not to wait? What if my scan is cancelled? What if I need the bathroom but I’m too weak to stand? What if I have a panic attack and there’s no one around to help calm me? What if I’ve forgotten something really important?

Other people’s lack of understanding about ME/CFS, and this includes medical professionals, also add to my stress levels. I have to use my limited energy repeatedly explaining why I need to lay down, why I’m wearing sunglasses, why I can’t tolerate noise etc. It’s frustrating because people don’t understand the damage their actions can cause, and quite how traumatic it can be.

I will be travelling to this appointment on my own, without the support of my husband or a family member. I will be at the mercy of strangers – hospital transport staff, nurses and doctors; people that don’t know me or the often crippling symptoms my ill-health causes, and the limitations this places on my ability to function. I don’t look sick – I look like a “normal” healthy individual. Will the strangers who I am entrusting with my care understand the seriousness of my condition? How will I cope without the back up of my loved ones and the safety net they provide. If I’m honest, this is probably the scariest part of the whole scenario for me.

Feeling apprehensive about change or a new situation is completely natural and we all feel it to some degree. We are generally creatures of habit and change brings an element of the unknown. But for someone with a severely limiting condition like ME/CFS this fear is multiplied tenfold.

I cope with this fear and anxiety by planning every little detail, but I also have to accept there are some things (a lot of things in fact) that are out of my control and no amount of planning will help. Would my time be better spent resting and letting other people take control? Maybe, but my anxiety would not allow me to do this, and the stakes are too high for me to leave this in the hands of strangers who do not understand my condition. In the end, I have to remind myself; I have been in a similar situation many times before and I’ve survive every single occasion, I will survive this too.

Do you suffer from these fears? Does leaving your familiar protective environment damage your health and fill you with dread? How do you cope with change and new situations?

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10 Spoonie tips on how to survive a heatwave

The prolonged hot and humid weather we have been experiencing over the past few weeks, or is it months now?, has been challenging for everyone, but the discomfort is magnified when you have a chronic illness. If you have limited mobility and are confined to your bed for long periods of time, it can be hard to stay cool. Many people with chronic illnesses face problems regulating their body temperature and the heat also increases our heart rate, which can add to the distress experienced.

As I have explained before, I really struggle in the hot weather. Anything above 20 degrees C causes dizziness and palpitations, but I have picked up a few coping strategies over the years. Here are a few tips for keeping cool during a heatwave:

1. Reusable Ice packs.
Hug them, lay your head on them, place them on the back of your neck – or all of the above. I have 8 in total, I even have a dedicated mini freezer just for my ice packs. Please remember to wrap them in a piece of cloth or tea towel so the ice pack doesn’t burn your skin.

2. Wet flannels.
I always have a cold wet flannel draped over the back of my neck, and I sometimes add them to my wrists. This really helps me cool down and reduces dizziness.

3. Oscillating Fans.
I have a number of fans in the house and during the summer one fan is on 24/7. The breeze from an oscillating fan can cool your body down directly but it can also increase the airflow in your room. During the really hot weather try adding a container of ice in front of the fan, this will actually cool down the air immediately in front of the fan.

4. Cooling towel.
I discovered cooling towels (they are sometimes called ice towels) a few years ago. You wet them and squeeze out the excess water, and magically they are ice cold.  They stay cold for some time but you do need to wet them regularly. I place a cooling towel on the back of my neck, my head, or just draped over my body.

5. Cooling mat.
Cooling mats are quite popular for pets but as I spend most of my time confined to my bed, I decided to give them a go. I find they do help me stay cool but during the extremely hot weather my body temperature warms them up quite quickly. You can also buy cooling blankets.

6. Air conditioning unit.
This year, fed up with constant dizziness and palpitations during the summer, I invested in a portable air conditioning unit – it was the best £300 I have ever spent. It is quite loud, so due to my hypersensitivity I can’t have it on all the time, but it has been a lifesaver in our recent prolonged hot weather.

7. Keep windows and curtains closed during the hottest parts of the day.
I actually have blackout blinds which block the direct sunlight and heat from the sun. Blocking out direct sunlight can prevent your house from becoming a furnace. Keeping windows closed during the hottest part of the day also helps reduce the temperature in your house.

8. Open windows during the coolest parts of the day.
First thing in the morning and late at night, open all your windows and doors, these are the coolest times of the day. I have to admit I don’t sleep well during the summer, but my favourite time of the day is 4-5am – it’s the coolest time of the day and I open every door and window available.

9. Water spray bottles.
Fill a bottle with cold water and spritz your face and hair regularly. This will cool you down, even if only temporarily. If you sit or lay in front of a fan, the additional breeze will cool you down further. You can also buy cooling mist sprays. If you are able to, try having a cool shower or bath.

10. Stay hydrated.
This one may sound obvious but staying hydrated during hot weather can be challenging for those severely affected by chronic ill-health. I have multiple water cups in easy reach of my bed which my carers refill regularly. You could also keep a water jug or a few water bottles in the fridge, or even the freezer. Ice lollies are another way of staying hydrated and they also cool you down.

I know it can be tough surviving long hot summers when you have a chronic illness, but there are ways to reduce the stress and discomfort you experience. Try to avoid any unnecessary activity and wear lightweight, breathable clothing. When I overheat and my heart rate increases, I tend to get anxious which can lead to a panic attack – a nightmare in extreme heat. So, try to stay calm and practice activities that reduce your anxiety levels, like meditation. I hope these practical tips have helped. Take care x.

Do you have any tips you would like to add?

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Just Breathe

This is a message to anyone who is feeling overwhelmed right now. To anyone that feels like they can’t face another moment in pain. To anyone who feels they are not worthy of love, or do not deserve happiness:

Just breathe.

All the problems you are facing, that seem insurmountable, don’t have to be solved right now. Just breathe.

You don’t have to have everything worked out right now. Just breathe.

All the negative thoughts and doubts can wait for another day. Just breathe.

I know everything seems too much to handle, but for now, all you have to do is… Just breathe.

Rather than spend your precious energy agonising over all your past mistakes, accept you are only human and… Just breathe

You fight so hard everyday, it’s time to give yourself a break and rest. Just breathe.

All the self loathing you are experiencing are lies told to you by your depression. You are a good person, you are worthy, you are loved, you deserve happiness. Just breathe.

However desperate your life feels right now, things can and will get better. Just breathe.

Please know you are loved, reach out for help if you can. Do whatever it takes to survive to your next breath. Just breathe.

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