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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 useful. Pacing 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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To be or not to be a mother?: a tough decision for someone living with mental ill-health.

This is a post I wrote especially for ProHealth’s Inspirational Corner and it first appeared there on the 7th August 2018.

I grew up in a very traditional family. As a young person, one of my “goals” in life was to become a mother. I was so sure about it – I even had names picked out ready. As a young girl especially, it went unquestioned that my path was leading to motherhood. My sister and I were given dolls to push around in tiny prams, and kitchen sets to cook plastic food for our babies. In society, every film you watch, every book you read, paints the picture of the fairy tale life. It’s every girls dream, isn’t It? – to meet your handsome Prince, marry, have a big family and live happily ever after?; To have a little bundle of joy who will love you unconditionally.  

I’ve always been a carer, I’ve always been the friend with a constant soggy shoulder because everyone came to me with their problems. I often joke that my empathy dial is turned up to max because I feel everyone else’s pain like it’s my own, and I want to help everyone. I’ve always been ‘Aunty Jo’ to friends’ kids and I love being around children – so it seemed a natural progression that one day I would become a mother myself.

Society paints a picture of the perfect parent. We are programmed from an early age to want to become mothers, and it’s in our DNA. There is so much pressure placed on women by the media, family, friends, and society as a whole to have kids – But what if your anxiety and perceived personal failings convince you otherwise?

I noticed quite early on that I was different to my friends. Anxiety started to surface at a young age. I remember at the age of 7 feeling like the weight of the world was on my shoulders. I was contemplating thoughts and ideas that a seven-year-old should not have even been aware of. Everything scared me, I was fearful of every new situation.

Things only worsened when I hit puberty. Hormones triggered a whole new level of anxiety along with panic attacks, and depression soon took hold as well. Depression dominated my teenage years and my early twenties. Constant thoughts and fears left me with no self worth or confidence – I believed I was worthless, a failure, weak, a burden and unlovable. Suicidal thoughts were rampant, I was exhausted and lacked any motivation.

I knew my mother had her own mental health problems, along with both my grandmothers – who suffered quite severely and spent a number of years in mental institutions. Whether this was something that had been inherited or triggered by life’s traumas, I could never know for sure: so how could I possibly risk passing it on to my child? How could I risk burdening another generation with this kind of torment? Also, what kind of mother would I be? I was consumed by the anxiety and depression I was battling, how could I possibly have the energy and love needed to raise a happy child?

The thought of being responsible for a defenceless, vulnerable child terrified me. What if my actions harmed them? Would I be an unfit mother? What if something bad happened to them? How could I protect them and keep them safe from harm? These thoughts were understandable, in fact they came from personal experience; my older brother died in a road traffic accident when I was 8 years old. I believe this tragic event shaped a lot of my thoughts and fears.

I pushed my feelings aside as best I could for a few years, but in my late twenties I fell in love. With marriage on the near horizon I had a very tough decision to make, followed by an even more difficult conversation with my now husband; Did I want to bring children into the world? Could I be a good mother? Could I overcome my fears and anxieties? And could I live with the possibility of passing on my ‘bad’ genes? Could I live with myself if my child suffered, like me, with crippling anxiety and devastating depression? Could I live with the guilt of passing on my ill health? Could I live with the guilt of not being able to care for my child properly – to be the mother they deserved? The guilt is something I have always found difficult to come to terms with.

My ultimate decision was; “No, I couldn’t.” There are so many wonderful parents in this world and so many children that are loved beyond anything I could offer. I decided that my desire to have children wasn’t strong enough to risk a lifetime of misery for my child. But also the decision was a selfish one; having a child would have triggered my anxiety to a point of being uncontrollable and unbearable. I had found some peace with my mental ill health at this point, with the help of my partner, and I didn’t want to lose the stability I had gained.

It turned out my husband-to-be didn’t want kids either, although seeing him with his young niece and nephew I know he would have been a great father. I don’t know if he said this to make me feel better about my choice; if he did, then I am forever grateful for his compassion, but ultimately it was a decision we both agreed on.

So did I make the right choice? – I believe I did. Not long after I made this decision my physical health deteriorated too – I developed ME/CFS and Fibromyalgia. There is some evidence to suggest these conditions can be hereditary – in fact my mum was later diagnosed with both too. I struggle to care for myself so I know I wouldn’t have been able to care for a child too.

Do I regret my decision?: There are times, when I see my friends with their children, that I envy the intimate bond they have, but I am now 43 and I have never once regretted my decision. I have close relationships with my friends’ kids and I will continue to relish my role as ‘Aunty Jo’ – I know I can offer more in this capacity than I ever could as a mother. I became a carer at a young age due to my mother’s own mental and physical health problems, I wouldn’t be able to live with the guilt of passing this role onto my child. I often feel like a burden to my husband, this would be multiplied tenfold if it was my child bearing the weight of my care.

Anxiety and depression will always play a role in my life and these have been amplified to a degree by my physical ill-health, but as I get older I am discovering healthier coping mechanisms for dealing with my fears. Not having children has allowed me the freedom to explore treatments and to take the time I desperately needed to concentrate on self healing. Writing brings me great comfort and helps me explore my feelings in a constructive way and this is something I will continue to do.

I know there are many women who desperately want to have children but are physically unable to, who may read this article and see my choice as a selfish one. I feel deeply for these women, and men, who are denied, by no fault if their own, the chance of becoming parents. Yes, my decision was probably a selfish one but I know it was the correct choice for me.

I am not saying that anyone who suffers from mental health issues should avoid having kids, far from it – I know many people who struggle with anxiety and depression themselves who are wonderful parents. I’m just saying that this was the right decision for me, and for us as a couple. Centuries of propaganda tell us we’re created in order to procreate, but the great thing about being human is that you get to make your own choices.

In a society which places so much pressure on women to become mothers, and where childless women are often seen as inferior due to their decision; ultimately the choice to have children is yours and yours alone. We need to start chipping away at the assumption that all girls should want to grow up to be mothers, and instead allow them the space to make their own decisions. You have to decide what’s right for you and not be bullied into conforming to societal stereotypes. Please don’t be afraid to walk your own path.

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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?

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

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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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Let me introduce myself

My name is Jo Moss, I am 43 and I have struggled with poor health all my life. After years of tests I was finally diagnosed with ME/CFS in 2006 and later with Fibromyalgia in 2013. I am hypersensitive to everything and intolerant to most prescription medication, so it’s been a struggle to find anything to ease my symptoms and to make my life bearable. Rather than helping, the side effects from the cocktail of drugs my GP and consultants have prescribed has actually worsened my health.

In addition to severe ME/CFS and Fibromyalgia I have also been diagnosed with osteoporosis, IBS, anxiety and panic attacks, depression, migraines and insomnia. My health deteriorated so badly that I had a full mental and physical breakdown about 5 years ago. I have been virtually bed bound since and desperate to find something to help with my crippling pain and anxiety. I have been suicidal many times as I couldn’t see the point in going on if this was what my life was to be like, life didn’t seem worth living. But I’m still here and every day that goes by I feel physically and mentally stronger.

Reading that back it sounds so depressing but the reason I’m writing this blog is to give other people, who are in the same position, a bit of hope. My life isn’t easy but it is worth living. I may cry a lot but I also laugh a lot. I may get depressed but I’m also optimistic. No matter how bad things seem right now they will get better. You can take back control and give yourself hope for your future.

I must add that I probably wouldn’t be alive today if it wasn’t for the love and support of my amazing husband, family and friends. Thank you.

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‘Postcode lottery’ claims over treatment for ME

The following article appeared in the Eastern Daily Press (EDP) on the 26th July 2018. Written by Geraldine Scott.

“Postcode lottery” claims have been made over treatment for myalgic encephalomyelitis (ME) in Norfolk and Suffolk, as one sufferer said variations in care had left her angry and abandoned.

Jo Moss, 43, from Norwich, was diagnosed with ME 12 years ago. She described feeling like she had been “missing behind closed curtains” ever since and said: “Like millions of others I live my life from one darkened room, I rely on carers for even my basic needs and I feel isolated from the outside world.”

But she said the illness had been made worse by not having access to treatment she said would give her “hope for a better future”.

Dr Luis Nacul, director of the CureME research group, presented clinical commissioning groups (CCGs) in Norfolk and Suffolk a proposal in 2016 for a cost-neutral consultant-led service.

The recommendations were accepted by CCGs in Suffolk.

However in Norfolk and Waveney those with ME are offered between six and 10 therapy sessions before being discharged back to their GP.

But Mrs Moss said this left those who were severely affected, and often bed bound, without care.

She said: “How can [the CCGs] justify making a decision that denies severely ill patients treatment that could dramatically improve their quality of life, and reduce their pain and suffering, especially if this treatment was at no extra cost to the service currently provided?”

She said the current system left “no support for the long term ME patient”, and added: “I have been left to cope with this devastating illness on my own. I am virtually bed bound and I suffer debilitating pain and exhaustion on a daily basis, yet I do not receive adequate or consistent care.”

Mrs Moss had already complained to the CCGs, but she said she would also like representatives to visit her at home to “see first-hand the impact severe ME has on [her] life”.

She added: “I don’t think they realise the impact of their decision on ME patients like myself. Access to treatment shouldn’t be a postcode lottery. Having specialist care from Dr Nacul would mean I wouldn’t have to battle this debilitating illness on my own like I have been doing for many years.”

It is estimated that around 250,000 in Britain are affected by ME, and for a large number the impact is life-changing.

A spokesman for the Norfolk and Waveney CCGs said: “A specialist ME/CFS service is in place to support patients, provided by East Coast Community Healthcare.

“It offers an outpatient service via face to face appointments, email, telephone and, in a small number of cases, home visits. The team is made up of GPs with specialist interest and knowledge of ME/CFS and specialist therapists including occupational therapists and physiotherapists.

“There have been ongoing discussions with people living with ME/CFS about the scope of the current service, and the CCGs will continue to ensure the views of people affected by ME/CFS are taken into account.

“NICE, the National Institute for Health and Care Excellence is planning a national consultation about management of ME/CFS. This is also something the Norfolk and Waveney CCGs would need to review and consider collectively in due course.”

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‘Missing behind closed curtains for 12 years’ – Woman describes living with ME

The following article appeared in the Eastern Daily Press (EDP) on the 6th May 2018. Written by Geraldine Scott.

Living from one darkened room, relying on carers for the most basic of needs.

That is the reality of every day life for one Norwich woman who suffers with a condition which is described by some as ‘living death’.

Jo Moss, 43, was diagnosed with myalgic encephalomyelitis – more commonly known as ME – 12 years ago and said it felt like she had been “missing behind closed curtains” ever since.

She said: “Like millions of others I live my life from one darkened room, I rely on carers for even my basic needs and I feel isolated from the outside world.”

It is estimated that around 250,000 in Britain are affected by ME, and for a large number the impact is life-changing.

The most common symptom is extreme tiredness.

Mrs Moss said: “I had been ill for years before being diagnosed with ME. Every GP I visited, begging for help, blamed my poor physical health on depression and anxiety and just prescribed antidepressants or anti anxiety meds – I was even diagnosed with PTSD by one doctor.

“I was finally diagnosed in 2006 by a new GP who had just transferred from the local ME clinic to my doctors surgery. She was great and referred me to the clinic. She was very supportive but sadly, she left soon after.”

Mrs Moss, who worked in finance, said at the clinic she was taught pacing – how to balance activity and rest to help manage ME – and was given a course of cognitive behavioural therapy.

And they also wrote to her employer to explain what ME was.

“I was still mobile at the beginning but my health continued to deteriorate due to a lack of treatment and support,” she said.

“And stress was brought on by having my health benefits removed. I was assessed as 100pc fit to work at a time when I could barely function or care for myself. I had to appeal and go to tribunal, which took 18 months, it was so stressful and exhausting – it broke me. I have been virtually bed bound now for 5 years.”

She said subsequent doctors had not been as supportive.

“I had one doctor tell me ‘your fatigue is caused by over sleeping’ – apparently sleeping too much causes ME. I had another GP tell me ‘if you don’t get out of that bed soon, you are going to die in that bed – sooner rather than later’ – I sobbed for 2 days.”

“Before I became sick I had a very active social life. I’m a rock chick who loves live music, dancing, singing, laughing and drinking with friends. I miss this so much, I even have vivid dreams where I’m singing so loudly I wake up with palpitations. My subconscious mind still craves stimulation even if my physical body cannot tolerate it.”

Now, Mrs Moss has started a blog to reach out to others suffering but she said it was also an opportunity to regain her voice – especially next week, which is ME Awareness Week.

She added: “I have gone years without a voice, hidden away in a darkened room – forgotten, missing.”

A spokesman from the ME Association, said: “ME is real. It’s devastating. It leaves people, at best, struggling to work. At worst, it leaves them enduring a tortuous existence, a living death, where they are unable to take their place in society. The ME Association campaigns to make the UK a better place for people with ME.

“People are taking their lives because they cannot bear the torture this illness brings. This is a completely unacceptable situation for a disease costing the UK economy around £3.5billion in lost taxes, healthcare and benefit costs.

“There is no cure – and the longer it will take to find one unless funding dramatically increases.”

• To read Mrs Moss’ blog, visit www.ajourneythroughthefog.co.uk

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