Perfection vs Happiness

“Perfectionism is a dangerous state of mind in an imperfect world”

I’ve spent most of my life beating myself up about not being perfect. I ruminate over every little mistake, and I used to avoid many new hobbies and new adventures because I was scared I wouldn’t be any good. Fear of failure stopped me from even trying, and because of this I missed out on so many new life experiences.

But when I fell ill, perfection wasn’t an option. Apart from the fact that it’s unreachable, I just didn’t have the energy or ability to strive for perfection. I was forced to accept mediocre or “ok” or “that will do”.

Coming to terms with this was hard. I was always taught that “if you’re going to do something, do it right” and “don’t start something unless you are willing to give it 100%”. But the truth is, it’s perfectly OK to do something just for fun, without any expectations or goals. You don’t have to be good at something to enjoy it, or strive to be perfect just to rationalise your choices. Acknowledging this was quite liberating.

It has opened up so many new doors for me. I’m now able to try new things without the fear of failure. I can try new hobbies “just because”. And I’m able to write about my experiences for my blog knowing that, although my writing is far from “perfect”, it has an impact, and I enjoy it!

But, most importantly, letting go of perfection has made me reevaluate what is important in my life. My new adventures have brought me much enjoyment and I’m a happier person because of this.

I’m not saying I’ve completely let go of my need strive for perfection, my anxiety doesn’t let me. And I still ruminate over my mistakes sometimes, it’s part of my personality. But my life definitely has more balance now.

So, I urge everyone to try to ditch the notion of perfection, and embrace life along with all its messiness and unpredictability. Try new things, do what you love and strive for happiness. Take care x

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Would You (or do you) Take Cannabis Illegally to Treat Your Medical Conditions?

I’ve been quite vocal, not only about my strong believe than cannabinoids (and terpenes) found in cannabis are pretty amazing and should be available to all, but also in my anger at the government’s implementation of new legislation that theoretically allows medical cannabis to be prescribed on the NHS.

I, like many others, waited patiently for medical cannabis to become available on prescription. I have wanted to try full spectrum cannabis oil for a long time now but I didn’t want to have to take the illegal route, not because it’s illegal, but because I didn’t feel I could “trust” the safety and potency of the source.

But after being let down so badly by this new legislation I felt I had no option but to try cannabis oil on my own. If the NHS can’t or won’t help me, then I will help myself.

So, I recently started taking THC along with my CBD oil. It’s still early days but I’m writing a diary, and I intend to be very open about my use of this illegal substance.

It shouldn’t be illegal. It should be an option for anyone who wishes to try it. And it should be a right for all to be able to access ‘safe’ cannabis medicine – we shouldn’t be made criminals just because we want some relief from our symptoms.

✔So my question is: Would you (or do you) take cannabis illegally to treat your medical conditions?

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9 Tips to Guide You Through a PIP Benefit Application

We all know the anxiety inducing feeling of the dreaded brown envelope falling on your door mat. Being assessed, or reassessed for health and disability benefits, is both exhausting and scary. We are often made to feel we are faking it or exaggerating our symptoms. But when you are genuinely ill, you should not feel ashamed to apply for benefits you are entitled to.

You may have been discouraged from applying for the health benefit PIP after reading so many horror stories about the process. It can be challenging, but following a few practical tips can make the process easier and improve the chances of your application being successful.

Please note, although this article is based on a PIP application, the tips also apply to Employment and Support Allowance (ESA) applications.

What is PIP?

Let’s start with the basics; what is PIP? Personal Independence Payment (PIP) is a benefit that is designed to provide money for people who have extra care needs or mobility needs as a result of a disability.

There are two parts called “components”, the daily living component and the mobility component. You may qualify for one or both of them.

The amount of PIP that you get depends on how many points you score in the PIP test for daily-living and how many points you score in the PIP test for mobility.

PIP is not means-tested so your level of income will not affect your eligibility or the amount of money you receive.

So now we can move on to the application process. Over the years I have completed my fair share of benefit forms, and I’ve appealed and successfully had decisions overturned. I’ve picked up some tips along the way, which I will now share with you.

1. My biggest tip! Complete the form based on a “bad” day.

The severity of symptoms with the majority of chronic illnesses fluctuate from day-to-day, and even hour-to-hour some days.

When you are asked if you are able to carry out a task DO NOT say “it varies” or “it depends” or “my symptoms fluctuate” – you will be penalised for that. ALWAYS complete the form based on a “bad” day. This applies to all health benefit forms.

2. Enlist help.

Tip number two; ask a friend or family member to help you complete the form. Ask someone who knows you well and the restrictions your chronic illnesses places on your life. This person could complete the form with your guidance or just be a sounding board. Either way please don’t do this alone.

Having someone else to bounce questions off and give you reassurance will make the process a lot less stressful. They may also notice things you don’t. We often adapt tasks around our illnesses and disabilities without realising it, someone looking in from the outside is more likely to observe these things.

If you don’t have anyone that can help you, you may be able to find a local charity that can assist you.

You may also find some helpful tips online on charities for specific conditions. For example; Action for ME provides some great information and advice for people with ME/CFS, who are completing benefit forms.

3. Prepare, Prepare, Prepare.

Don’t just dive into the form head first. Read through the whole form first and make notes. I tend to photocopy the form and complete a draft copy first.

Also, have your medical records, or at least the dates of diagnosis etc to hand. And compile a list of your medical conditions and symptoms, and all the ways they restrict your life and your ability to carry out tasks.

4. Take your time.

Although there is a time limit for forms to be completed and returned, and you probably just want to get it over and done with, please don’t be tempted to rush the form. Complete a couple of sections each day, and read through the whole form before returning.

5. PEM (Post-exertional malaise) – “Payback”

This is an important point for people with ME/CFS but also for people with any other chronic illness that experience “payback” after increased activity.

If you are able to carry out a task but you spend the next few days in bed suffering with pain, fatigue or whatever delightful symptoms your illness throws at you, then DO NOT write on the form that you can complete the task. If doing a task causes you harm then you cannot safely carry out that task. Again, do not say your symptoms fluctuate.

5. Gather evidence.

Send as much evidence to backup your statements as you can. This can include:

  • A print-out of your patient summary record. My GP refused to write a letter supporting my PIP assessment but did offer to print off my patient summary. This record will have details of your medical conditions, test results, referrals etc. Mine also states that I require home visits.
  • Ask your GP or other health professional to provide a supporting letter. But please be aware, not all GPs are willing to provide this service, and sadly some health professionals may charge.
  • Any hospital appointment letters.
  • Test results.
  • Medication list.
  • Care plan or letter from your care agency.
  • A diary of your symptoms and how they affect your ability to carry out tasks.

6. Photocopy everything!

Photocopy the form and covering letter for your records. Only send copies of your “evidence” unless the originals are requested. Also keep a record of any subsequent letters from the Department of Work and Pensions (DWP), and all phone calls. Note time of the call, the person you spoke to and what was discussed.

There have been mistakes made by the DWP on every application I have made, I have even been accused on lying on applications. But as I had photocopies for everything, I was able to prove the mistakes were not mine. By keeping your own record you can safeguard against these mistakes.

What happens next…

Your application will now be processed. You may be asked to provide additional evidence, and with the majority of applications, a medical assessment will be required.

7. Medical assessment tips.

Once your benefits form has been processed, 95% of the time a medical assessment will be required. This will either be carried out at a local assessment centre or in your home.

My first tip here is; don’t be afraid to ask for a home assessment. If travelling to your local assessment centre, and sitting through an hour-long appointment will leave in so ill you are unable to function properly for weeks, then you should qualify for a home visit. You should not be expected to cause yourself this much harm. If your home visit request is denied please consider appealing – ask your GP if they would provide a letter in support.

More tips:

  • Don’t assume the person carrying out the assessment knows anything about you or your medical conditions.
  • Plan your trip to the assessment centre.
  • Reread your application form to remind yourself of the questions and your answers, and take a copy with you.
  • Mobility aids. Use whatever mobility aids your need on a “bad” day.
  • Contact the assessment centre to ask about accessibility. Don’t just assume there is wheelchair access.
  • Make notes to take with you.
  • Attend with a friend or relative. Have someone present for support – they can also take notes. In stressful situation we don’t always take everything in.
  • Take any additional evidence.
  • Ask if you can make an audio recording of the assessment – but you must do this 3 days before your assessment and ask your provider about the rules for using recording equipment.
  • Remember; DO NOT say your ability to carry out tasks fluctuates – base all answers on a “bad” day.

The Decision.

You will then get a letter either stating you application has been declined, or stating the level of benefit you have qualified for. If you have been declined or have been accepted on a rate lower than you believe you are entitled to, please don’t be afraid to appeal the decision- it’s your right to do this.

8. The appeals process.

The latest government statistics show that more than half of PIP decisions are changed after mandatory reconsideration or an appeal to a tribunal. So please don’t be afraid to appeal – it doesn’t cost any money.

I know it might seem a bit scary but there is a lot of helpful advice online and you may also have a charity local to you that could help you compile your appeal.

The first step in the appeals process is to ask the DWP to look at the decision again. This is called mandatory reconsideration.

If the DWP didn’t change their decision when you asked them to look at it again, you can appeal to an independent panel, called a tribunal.

The tribunal looks at the evidence from both sides, then makes a final decision. The tribunal is part of the court system – it’s not part of the DWP.

There are many guides online to help you through the appeals process. Citizens Advice and Advice Now have comprehensive but easy-to-follow guides.

9. Create a file for all your paperwork.

My last tip is to create a file for all your paperwork. Keep all your photocopies, records of conversations, letters from the DWP and all evidence, in one file. This will mean you are more prepared for the next assessment but also means you have a “back-up” if the DWP question you about anything on your application.

In the past, I was accused of not recording an income from an insurance policy I was receiving, on a benefits assessment form. Basically, I was accused of lying (making a fraudulent claim) and ordered to pay back £1500 of benefit based on this. Thankfully I had a photocopy of the form which proved I had recorded it correctly, and the mistake was made by the DWP, not me. This happened 2 years after I initially completed the form, so safely storing all paperwork is essential.

I know the application process can seem very daunting, and its definitely exhausting. But hopefully these tips will help you get access the benefits you are entitled to.

Good Luck!

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7 Potential side effects of CBD and tips on how to minimise them

People often assume that because CBD, and other cannabinoids, are natural substances, that they do not pose a risk of any side effects. This is untrue. Although the potential side effects of CBD are minimal compared to other treatment options, they do still exist.

CBD is safe for all the family to take on a daily basis. And according to a report published by the World Health Organisation (WHO) “naturally occurring CBD is safe and well tolerated in humans (and animals), and is not associated with any negative public health effects” but there are potential side effects which you need to be aware of before starting CBD.

The following article is not designed to scare you, but rather arm you with all the available information, so you can be prepared. If these adverse effects do occur, I have also included steps you can take to minimise the discomfort you experience.

What is CBD?

First up, a brief introduction to CBD and how to it works.

CBD is the abbreviation for cannabidiol, one of the many cannabinoids, or chemical compounds, found in cannabis and hemp. While beneficial for wellbeing, CBD doesn’t have the psychoactive properties of it’s more famous cousin THC. Even at high doses CBD will not get you high and it’s safe for all the family to use on a regular basis.

CBD is a wonder of health and wellness because of its powerful interaction with the endocannabinoid system (ECS).The ECS regulates many vital functions within the body including; mood, appetite, sleep, hormone production, and even pain, stress and immune system responses. CBD has been shown to positively influence the endocannabinoid system (ECS) to maintain balance and promote good health.

If you would like to read more about how CBD works within the body please read my article; How CBD works. The endocannabinoid system explained.

Potential side effects.

Now let’s move on to discuss the potential side effects of taking CBD. Although CBD is generally well tolerated and considered safe, it may cause adverse reactions in some people. Please note, not everyone will experience these side effects but it is important you are aware of their potential.

1. Dry mouth.

Probably the most common potential side effects of using CBD oil isthe unpleasant feeling of dry mouth. While researchers aren’t completely sure why this can happen, a study published in 2006 showed that the endocannabinoid system receptors CB1 and CB2 are present in the glands responsible for producing saliva. When these receptors are activated, the saliva production can drop, leading to dry mouth.  

This side effect is experienced by quite a few people who use CBD oil. However, it is very easy to overcome by maintaining an adequate level of hydration, so that the dry mouth does not occur at all or becomes very minimal.

2. Dizziness or lightheadedness.

Another potential side effect is dizziness, although this tends to occur with higher doses of CBD. Dizziness, similarly to dry mouth, may appear immediately after taking CBD oil. It may be accompanied by small headaches, blurred or vague vision and problems with maintaining balance. Temporary drop in blood pressure appears to be the cause.

This typically passes within a few minutes on its own, or can usually be resolved by laying down for a few moments, drinking a cup of coffee or tea, or snacking on a little piece of chocolate. But please be mindful of this potential side effect when you first start taking CBD, and don’t drive if you are feeling dizzy or lightheaded.

3. Drowsiness.

After a high dose of CBD oil, some users may experience drowsiness, although some people who are very sensitive to CBD may experience drowsiness at lower doses. The feeling of drowsiness may be in part due to your body relaxing. Many people start taking CBD in an attempt to treat conditions like anxiety or chronic pain. Our bodies are often in a heightened state when battling these conditions, which is exhausting. CBD can help us relax and also reduce pain. When our bodies relax we can often feel drowsy. Listen to your body and rest if you feel drowsy.

It needs to be noted that in some people a completely opposite reaction can occur. Many find CBD stimulating, which gives a feeling of alertness.

When you first start taking CBD, spend a few minutes gauging how your body responds. If you feel drowsy please don’t attempt to drive.

4. Reduced blood pressure.

This is one of the most important potential side effect of using CBD oil, as it affects all other issues. High doses of CBD can cause a small drop in blood pressure in some individuals. This will usually occur within a few minutes of the CBD oil entering your system.

This doesn’t happen to everyone, and the worst you should expect is a few minutes of feeling lightheaded. However, if you have any problems with low or high blood pressure, or are taking any medications for blood pressure, talk to your doctor before trying CBD oil.

5. Diarrhoea and nausea.

Diarrhoea and nausea have been reported as a side effect by some CBD users, although these symptoms are more likely to occur in people who already have pre existing digestive disorders. The cause may not only be CBD, but also the carrier oil which is used e.g. Olive oil or MCT oil, so please check all the ingredients listed. Symptoms normally only last a couple of weeks. Drink plenty of water to avoid dehydration.

6. Delay, or even inhibition of certain medicines’ effects.

CBD can also interact with several medications because it inhibits the activity of specific liver enzymes, in particular cytochrome P450, which is responsible for metabolising nutrients.

The way that CBD is metabolised by your body can interfere with how your body normally metabolises other drugs you take. If those other drugs aren’t metabolised properly, they can hang around and stay in your system longer than you want. This can cause negative side effects and complications.

This side effect can normally be avoided by leaving a 2-4 hour gap between your medication and CBD.

If you are taking other supplements or medication please check with your GP or pharmacist about any possible interactions. Typically a 2hr gap is required between CBD and your prescription meds but certain drugs like: Beta blockers, blood pressure tablets, anticoagulants and any other medication that carry a grapefruit warning, generally require a 4hr gap.

This side effect only applies to CBD taken orally as it is metabolised by the liver.

Before you start using CBD oil, discuss it with your doctor to ensure your safety and avoid potentially harmful interactions.

7. Herxheimer Effect or “Herxing”.

Some adverse effects may be caused by a phenomenon called “Herxing”.

People commonly report feeling worse before they feel better, when they first start taking CBD. Common symptoms include headaches, itching and rashes on the skin. These symptoms appear to last anywhere from a few days to a few weeks, but they disappear as quickly as they started.

Many believe a phenomenon called “the Herxheimer reaction” or “Herxing” is to blame.

What is Herxing?

Herxing is a short term reaction to the body as it detoxifies. This is common when people take antibiotics and it is sometimes referred to as the “die off effect”. It is quite common to experience flu-like symptoms which can include a headache, joint and muscle pain, body aches, a sore throat, sweating, chills or nausea. If it occurs, it generally lasts a few days but can last for a week or more.

Herxing is actually helpful to your system as it is creating a detoxifying effect. In basic terms, you have ‘herxed’ because the effective treatment releases toxic chemicals from the cell walls of dying bacteria.

Our immune system reacts to these toxins, but we are not able to eliminate them quickly enough. As a result, the toxins are capable of causing some unpleasant symptoms, and the original symptoms may even get worse for a short while.

Many ask why CBD would cause herxing, as it’s normally associated with antibiotic treatments. But CBD has powerful antibacterial and antioxidant properties, so it isn’t really a surprise that it could also lead to the herxheimer effect.

You can minimise these unwanted side effects by introducing CBD slowly, and drinking plenty of water.

Biphasic properties of cannabinoids.

Although not a side effect as such, it is important that we acknowledge the biphasic properties of cannabinoids like CBD. But what does “biphasic” mean?

A biphasic medicine or drug is one which can have different effects on the user depending on the concentration levels in the blood. Alcohol is a biphasic drug too, it works by acting as a stimulant until blood alcohol levels reach a certain percentage (0.05%). After this point, the amount consumed acts as a depressant and causes sedation.

When it comes to CBD, low doses may be stimulating while higher doses appear sedating. But with some people low doses may improve conditions like anxiety, while larger doses may actually heighten anxiety. Please be aware of this when you start taking CBD.

This is why we always recommend the “low and slow” approach to introducing CBD. And also why less is often more when it comes to cannabinoid therapy.

“Low and slow” approach to introducing CBD.

Many of these side effects can be avoided or minimised by using the “low and slow” approach to introducing CBD.

I will explain this is more detail in my next post about CBD dosing. But the general advice is to start with 2-3mg of CBD, 2-3 times a day. Stay with this dose for a week, and then gradually increase if necessary.

Please note; this approach is not always suitable. Some medical conditions, like epilepsy, may require higher doses of CBD from the outset.

Is it possible to have an allergic reaction to CBD oil?

While it appears to be a rare side effect, it is possible, as with all substances, to have an allergic reaction to CBD oil. Please check all the ingredients in any CBD product before you buy, against any substances you are known to be allergic to.

When you first start taking CBD, take the smallest dose possible so you can gauge how your body responds. This is particularly important if you suffer from medical conditions like MCAS or are known to have multiple allergies. If in doubt please consult your GP.

Please consult your doctor.

Research has shown that CBD can be an effective treatment option for a myriad of symptoms and medical condition. The reason for this is it’s positive interaction with our native endocannabinoid system.

But although CBD is a safe options for all the family to use on a regular basis, it does come with some potential side effects. These side effects are mild compared to most prescription medication, and can be avoided or reduced by taking some simple steps.

But please be aware of these potential side effects when you choose to start your CBD journey.

Please note; I am not a medical professional. If you have any concerns, please consult your GP before commencing CBD.

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Why I’m not celebrating the introduction of medical cannabis on prescription

Well, today is the day that cannabis-based medicines theoretically become available on prescription. Although many of us had high hopes (no pun intended) that this step would finally allow thousands of patients across the UK to gain access to cannabis treatment, the reality is – the vast majority of us will not qualify.

It appears that the government’s actions have been designed just to appease us, the public, following a few high profile cases of some very sick children with epilepsy – nothing more. We have tried to remain positive and say “it’s the first step” or “at least it’s a step in the right direction” but sadly I don’t even think this is true anymore.

Let me explain my pessimism and highlight the massive flaws in the government’s approach to introducing medical cannabis.

1. Doctors are already saying that they will not prescribe medical cannabis.

As patients approach their doctors about medical cannabis, they are being met with doctors blankly refusing to even consider cannabis as a treatment option.

This is partly due to ignorance and lack of education. Doctors do not want to prescribe something they have not received any training for, and sadly, the endocannabinoid system and cannabinoid therapy are not taught in medical schools.

Also medical cannabis is not yet included in NICE guidelines, which seems to be an excuse used by many doctors.

But unfortunately, doctors personal prejudices are also at play here. The propaganda surrounding cannabis has been rife for years and doctors are just as susceptible to these lies as the rest of us. The lack of knowledge about cannabis can be addressed through education but this will take time. The doctors prejudices over cannabis is sadly something which may take years to overturn.

2. Tight restrictions on eligible medical conditions.

Initially patients suffering from chronic pain conditions were included in the list of eligible conditions. It was then announced that there would not be any restrictions on the medical conditions eligible, which was positive news. But this criteria has changed yet again.

New NHS guidance for doctors in England says it should be prescribed only when there is clear published evidence of its benefit and other treatment options have been exhausted.

The treatments can only be prescribed in cases of:

  • Children with rare, severe forms of epilepsy.
  • Adults with vomiting or nausea caused by chemotherapy.
  • Adults with muscle stiffness caused by multiple sclerosis.

As a chronic pain patient, I am angered by this last minute shift.

3. There must be an “exceptional clinical need” for cannabis-based medicine and all other treatment options exhausted.
Patients must have exhausted all other treatment options before receiving access to medical cannabis. Doctors will have to prove there is an “exceptional clinical need” and no other medicine would be suitable for their patient. Sadly, for most, this will mean they will not be eligible, and in the very least it will delay cannabis being prescribed for years, along with the suffering and side effects patients endure through most traditional treatment options.

4. The guidelines to clinicians basically amounts to “do not prescribe”

The guidelines to clinicians by NHS England was left until the last minute – it was only released the day before the implementation of this new legislation. The actual guidance is buried within a mountain of bureaucratic doublespeak. Aside from chemotherapy-induced nausea, the guidance amounts to “do not prescribe”. This is extremely disappointing and will contribute further to doctors unwillingness to even look at cannabis as a treatment option.

If you would like to read the guidelines please click here

The NHS have also released patient guidelines.

5. The cost will mean doctors will be dissuaded from prescribing.

Pharmaceutical companies are charging huge sums of money for their licenced cannabis-based medicines. I know it costs a lot to gain a licence and many years of trials, but the figures being quoted, for what many see as an inferior product, are ridiculous

Ultimately this will means doctors will be unwilling, and discouraged from, prescribing something that costs the NHS more money than traditional medication.

6. Very limited choice for licenced cannabis medicines.

To be eligible, cannabis products must be produced and regulated for medicinal use in humans. The development of approved and regulated medicine can cost millions and therefore is only likely to be a viable option for large pharmaceutical companies with the financial backing to carry out the extensive tests and trials needed.

This definition plays into the hands of large pharmaceutical companies who already have approved cannabis-based products including Epidiolex and Sativex, developed and produced by GW Pharmaceuticals.

Unfortunately this limits the options available for patients as large pharmaceutical companies are more focused on isolated cannabinoids and their products are also suspended in alcohol. Single cannabinoid products are seen as far inferior to “whole plant” medicines, and many people are sensitive to alcohol – why mix such a healing substance with alcohol?

I personally cannot take a medicine that is suspended in alcohol. I am intolerant to alcohol and it’s also one of my main pain triggers, and I know I am not alone. It could take years of trials before alternative cannabis-based medicines are licenced and there’s no guarantee they will be “whole plant” or alcohol-free.

7. It’s going to take years.

The reality is, that although this change in legislation has been passed very quickly, the potential benefits will take years to be felt by the vast majority of patients wishing to access legal medical cannabis.

It does allow for children with severe epilepsy to receive the treatment they desperately need (once they have jumped through MANY hoops), although the “whole plant” cannabis medicine which is successfully taken by epileptic children like Alfie Dingley, will not be available – only less effective isolated cannabinoid treatments.

It appears that the only people who will benefit from the legislation change are pharmaceutical companies and their shareholders, many of whom are politicians and their family members. Am I being cynical? I don’t think so – I’m being realistic. Faced with all the facts, this whole farce seems to be a well orchestrated charade designed to appease the general public – while chronic pain patients like myself are left no better off than before the change in legislation.

So where does this leave patients?

I don’t like writing such a pessimistic post but the reality is we have been promised so much and given very little. I am pleased that children with severe epilepsy will (hopefully) be getting a promising treatment option, but what about the thousands of other patients who would greatly benefit from cannabis treatment?

In reality, cannabis-based medicine will only be prescribed in extreme cases, which was already the case before the new legislation came into force – so nothing has changed.

As a chronic pain patient myself I feel angry and severely let down. I really wanted to try medical cannabis and I believe it’s a far better treatment option for my chronic pain than any prescription medication currently available.

Maybe it’s time for me to explore medical cannabis on my own?

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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.


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

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

Embrace your flaws and unleash your story.

“Please don’t be afraid to tell your story. Your voice is important and your story is unique.”

Writing about your most personal thoughts and feelings, and publishing them for the whole world to critique, can be a scary thing. Especially when you suffer from anxiety and depression yourself, or you live with an invisible chronic illness, which many refuse to believe exists.

I’ve been accused of “attention seeking” and “self pity”. I’ve been told I should be more “positive” in my posts, and I’ve been accused of “faking it”.

But the people that make negative comments like these, don’t understand why I, and many others like me, write a blog. Unless you go through these struggles daily you cannot comprehend the positive impact discovering that you are not alone in how you feel, can have on your life.

Reading someone else’s thoughts, and thinking “I could’ve written that myself” or “It’s like she’s talking about me” can make us feel less alone.

Just knowing that other people feel this way too, or feel a certain pain, or act a certain way due to illness, comforts us and can turn something which is frustrating and often scary, into a situation which is more manageable.

I don’t share my darkest thoughts or my, often depressing, reality to get sympathy. I do it to raise awareness. I do it to let other people know they are not alone. I do it to let the person who is in their darkest moment know that things will get better – they will not always be this bad.

I do it to break the stigma surrounding, not just mental illness, but all illnesses that are not truly understood. I do it to stand up for myself and a community that is often abused or downright ignored. I do it to give myself and others a voice.

You are the reason I write my blog.

A few months ago, I wrote a post about how depression makes me feel. I almost didn’t publish the post because it’s a very honest and raw piece, and I was scared of the response I would get from people who don’t understand my pain, or the reasons why I share my thoughts.

I was scared people would think I was being a drama queen and overreacting. I was scared to let the dark thoughts, which run cycles in my mind, out of their cage. I was scared to open up and admit my insecurities and failings.

But I’m so glad I did. I have received so many positive comments from what many would describe as a “depressing” post. It was also published on The Mighty, and to date it has received over 11k likes, which just goes to show how powerful a collection of thoughts and words can be. But there’s nothing special about me, you too can share your story.

I would like to say “Thank you” to everyone who comments on any of my posts. It means the world to me and it’s what gives me the strength to keep writing, even when I lose my self confidence.

Here are a few readers comments taken from this post:

This is so spot on!!!”

“This is probably the best article about depression. It’s exactly how it feels. Unfortunately, I’m on day 2.”

“I relate to this 100%”

“It was perfectly said. Exactly what I’m going through at the moment. Hopefully it passes by quickly so I can start feeling somewhat normal again”

“I’ve never read it so spot on and well explained, like you are inside my mind.. Thank you!”

“You describe this type of depression and anxiety perfectly.”

“I’m 39 and have CPTSD which brings along depression and anxiety! Other than that! I swear you was in my head! Living my life in a parallel universe! WOW 🙌🙏💜 My heart breaks for knowing your pain! I also salute you 🙌💪🙏❤ the strength it takes to get through is nothing short of superpowers 🤩💪Your amazing!! Thank you x”

“I can relate to this…. it’s a my story as well but, do remember that you you are good enough and lovable… it’s just a irrational thoughts and not true that you are not loved and unlovable…😊❤”

“Gosh I can relate to this.”

“This is such a stripped down raw and so to the point.i could feel every word written.stay strong through it all sending you love and gratitude for such a beautiful essay.”

“Wow! What an incredible story. You’ve provided so much insight to me in regards to my son,. Even though I am very involved in his everyday, your story helped me understand him so much more. Thank you, and best of luck for a long, fulfilling life.”

“Incredible article. Thank you”

“This hit me hard. I’m glad to know I’m not alone.”

“This is so relatable!! I found myself nodding along and moved to tears as I read this. It is so difficult to be in a constant battle with yourself. I am too engrossed in my own mind, too tired to be able to explain to someone what I’m feeling or going through. Thank you for giving words to my emotions. It’s getting progressively hard to carry on…”

“Txs txs thank you so much!!!! That’s exactly how i feel right now… and i feel so alone but your words are a reminder that I’m not alone. I’m not the only one. And this too will pass…. hopefully”

“Thank you for sharing. I live the same things but can’t express it. You did express everything for me. Thank you!”

“Thank you so much… this means a lot to me”

Some of these comments are so powerful they made me cry. They are a huge reminder of why I do what I do. I feel immensely privileged to have my words reach out to so many.

Real life isn’t “perfect”.

So this leads me to answer my critics. Why do I write about the often depressing realities of living with chronic ill-health? Why don’t I paint a more positive picture of life?

I don’t know about you, but personally I’m sick of trawling through all the sterile images, and the endless pieces of advice from seemingly “perfect” people, with “perfect” lives, who are pretending to have their shit together.

This isn’t reality, and until we accept this and back away from the pretend manufactured world we all immerse ourselves in, our mental health will continue to suffer.

I am not going to apologise for being “Real”. I am not going to sugarcoat my feelings or experiences just because other people may find them hard to stomach. I believe it’s important to show the realities of life.

So, I will continue to share my imperfect flawed life. My imperfect flawed self, and my imperfect flawed thoughts.

I will continue to share my personal experiences with mental illness and chronic illness, even if sometimes the reality is tough to read.

I will continue to show it’s OK to not be OK. It’s OK to be flawed, in fact it’s not just OK – it’s called being human.

I will continue to let anyone who needs it know, that just like me, you too deserve happiness. You too are worthy of love. You too are allowed to be imperfect.

You too are allowed to have days when the world is too much to bear – it doesn’t make you weak.

You too are allowed to be angry, fearful, depressed, irritable – these are valid emotions and they matter.

You too should feel like you are able to tell your story without fear of being judged or ridiculed.

I’m fast approaching the 1 year anniversary of my blog. 1 year since I took the scary first step in sharing my innermost thoughts. And it has been scary at times. A year ago I couldn’t have even contemplated the rollercoaster of a journey this step would take me on. But I’ve relished every minute. Thank you for all your support.

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

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!

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

Norwich: Invisible Cities Linkup

Pros & Cons of Living with Chronic Illness in Your City.

I have decided to participate in “Invisible Cities Linkup” hosted by A Chronic Voice. It’s a great way to learn about the ins and outs of living with a chronic invisible illness in different cities and towns around the world. I will be answering a list of 12 questions about the quality of life in my city, as someone living with a chronic illness.

Q&A: What’s the Quality of Life Like in Your City with an Invisible Illness?

I live in Norwich, Norfolk, UK. Norwich is a beautiful city located in the East of England. It’s a relatively small city surrounded by countryside, within a short drive of the coast. Norwich is situated in a mainly rural area of England called East Anglia and it’s about 120 miles north east of London.

1.Best thing about your city for living with chronic illness?

Everything is in close proximity. Pollution levels are low. There are lots of open spaces and public parks. You can be in open countryside in minutes and the seaside is only a short drive away

2. Worst thing about your city for living with chronic illness?

Probably the public transport around the city and transport links to other parts of the UK. Norwich is situated on a “bump” that juts out on the east coast of England. Road links are pretty bad and to visit anywhere else in the UK by train you first have to travel to London.

3. How accessible do you think your city is in general?

Norwich is known as the most complete medieval city in the UK, including cobbled streets, ancient buildings and many medieval lanes. Although it’s a beautiful city, many of it’s ancient structures are still in use today as shops, restaurants or public buildings. They were not designed for disabled access and they have many steps and levels. The older streets are also cobbled, which is not ideal. But if you stick to the newer parts of the city centre Norwich is relatively accessible. The main streets are pedestrianised, which helps.

4. How educated is the public on chronic illnesses there?

I don’t think they are any more or less educated than any other UK city. Norwich is a small enough city to still have a friendly town vibe, and locals are always open to learn about new things.

5. If you could pass one new law in your country, what would that be?

I would reverse the damaging cuts our current Conservative government has placed on our public services. I would invest in the NHS, especially the mental health sector. We are so lucky to have free healthcare but it’s not going to be around much longer if the Tories have their way. I would also implement a fairer assessment process for all health benefits.

6. Which is your favourite city or country (other than your own) and why?

Probably London. I love the hustle and bustle, and there’s so much to do. No matter how many times I visit, I never get bored and there are always new things to discover. It’s also a big contrast to where I live. Alternatively, anywhere by the coast. I love to be near the sea.

7. Where in the world would you visit, if disability, illness or level of fitness weren’t an issue?

I would love to visit the beautiful lakes in Northern Italy. I would also like to return to the US.

8. What sort of alternative treatments or therapies wouldn’t raise any eyebrows there? (Perhaps it’s ingrained in the culture, totally legal, etc).

I don’t think any particular alternative treatments would raise eyebrows. Norwich folk are pretty open and accepting of most things.

9. Which are the most and least affordable therapies there? How much do they cost in general?

It’s been many years since I’ve paid for private alternative treatment due to lack of money. I wouldn’t know what the current prices are.

10. How expensive is it to live with a chronic illness there? Any stats you’d like to share to give a clearer picture?

We are extremely lucky in the UK that we have free healthcare through the NHS. But care is not consistent and it’s really not equipped to treat patients with multiple illnesses.

Prescriptions are £8.60 although if, like me, you have multiple prescriptions each month, you can save money by buying a prescription prepayment card.

I was also provided funding to convert my bathroom to a wet room due to my disabilities, and my care costs are covered. So I guess I’m very lucky compared to many around the world. And I would probably be bankrupt if I lived in a country like the US where you have to pay for healthcare.

11. What are the hospitals like in terms of service, quality of care, emergency room protocols, etc?

It depends on the time of year and day of the week, for A&E (emergency care). Wait times can be very long. But considering all the cuts that have been made to the NHS the quality of care is very good. I have regular hospital visits and I’m always looked after well.

GP practices are the first port of call for non urgent treatment, and the level of care and consistency varies a lot between practices and even between GPs within those practices.

12. What should foreigners be aware of in regards to healthcare, if they want to visit or work in your city?

Our emergency phone number is 999. Accident & Emergency (A&E) is where you go for urgent care and it’s located at the main city hospital. Be prepared to have to a wait a few hours for treatment as A&E departments are always very busy.

We have non emergency out of hours healthcare services. You can access them by dialling 111 but we also have “walk-in” centres.

Non emergency services between 8am-6pm are normally carried out by GP practices.

If you would like to participate in the Invisible Cities Linkup, please click here and follow the instructions.

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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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