Happy Sunday!

How did you enjoy your extra hour today?

For me, Sunday mornings are usually a forced rush out of bed to enjoy as much of Andrew Marr as possible, but this morning I was full of glee to be in front of the TV way ahead of Mr.Marr.  Having said that, it wasn’t a hop, skip and a jump getting there.  I woke up with moderate fatigue, which meant some mental work to get out of bed, and on to the sofa.  Once there, I sat and enjoyed the quiet and stillness of the morning with a mug of hot water and lemon (coffee is a no-no), breathed and had some gentle banter with myself.  That gave me a little more energy to make some porridge and watch a few hours of political programming until my body caught up with my brain.  At which point, it definitely was a hop skip and a jump into the shower (there was a little jig in there somewhere too).  And so my day has turned around with a little patience and kindness.

Five hours later, I am now very much enjoying that Sunday coffee and fulfilling the ambition of the day which was to write.  All it meant was I had to rethink how I spent the morning, give my body the time it needed, some boosting food and most importantly gentle words of encouragement.

This may sound like an easy healthy perspective, but it wasn’t easy to get here. Cancer-related fatigue (CRF) really tripped me up after treatment, it’s no exaggeration to go as far as to say it was a disabling.  It took over a year and a half to fully get control back and be able to enjoy a new normality.  It’s chronic, it’s still there, it’s something I have to manage meticulously every day, and by doing so I’m moving myself further away from it.

Fatigue is one of the biggest and long term side affects across all cancers, one that isn’t fully understood by medical professionals and often under-reported by patients to their specialists.  That was definitely true for me, I accepted it was part and package and never really gave it much time in my conversations with the hospital doctors, I felt there were bigger things which needed their attention.  As a result, I didn’t have any guidance on it apart from some general advice I found on the web.  Without fully understanding how it worked or management techniques, I spiraled to a very dark place, the lowest point in the whole journey.

I was prescribed access to my local Marie Curie centre for physiotherapy, and through that I gained a wonderful team of professionals to start combating this minefield.

Everyone experiences CRF differently, and to different degrees.  It’s caused by different factors; some of the cancers increase your body’s need for energy, which weaken your muscles /  chemo / radiotherapy / medication / anemia / operations / poor nutrition / lack of exercise / hormone therapy / emotional and mental wellbeing.

I have a hormone-based cancer which grew quietly and meant for three years prior to being diagnosed it was robbing me of a lot of energy, and my organs weren’t able to operate to their full capacity, meaning my body went into treatment already quite fatigued.  There were two rounds of chemo, major op and hormone therapy in the space of a year as well as dozens of weird and wonderful drugs, all of which bring fatigue with them.

I learnt enough from the Marie Curie team to start making pivotal changes to combat the fatigue, plus I had amazing daily support from a very special person who ‘got it’.  Even so, I was hostage to this condition mentally and physically until March this year – 1 year and 4 months after all medications stopped.  In March I started taking probiotics which assisted my gastric system and pancreas to start behaving.  Up until this point, I couldn’t keep food in for more then a few days at a time (at best), keeping my body and mind stuck in a state of fatigue and pain. Unable to absorb nutrition properly I was running on reserves constantly, preventing me from putting the building blokes of strength together from the inside out.  I finally find myself in the joyous and very blessed position to be able to that.  I know how very lucky I am to get here and I don’t take any of it for granted.

So that’s my background with CRF, I’d like to start the conversation about how I manage it.  It’s a big subject and will be a common thread throughout my posts, today is just setting the scene really for future conversations.

For those of you who are not recovering from cancer, it’s worth briefly explaining that fatigue and tiredness are two very different things.  In this day and age, we can all relate to tiredness from doing too much and / or not sleeping enough.  With tiredness you still have a fair bit of energy, your muscles feel weak (especially after work), you might feel forgetful and impatient but all in all these symptoms will pass with a good amount of rest (more rest the older you get). 

Apart from a longer list of symptoms, fatigue in contrast, can’t be eased by rest or a cup of coffee, in fact both of these make it far worse. For more information on CRF symptoms, see Macmillan  http://www.macmillan.org.uk/Cancerinformation/Livingwithandaftercancer/Symptomssideeffects/Fatigue/Aboutfatigue/Fatiguecancer.aspx

As well as the mental symptoms, for me it feels like I have been completely zapped of all energy, from my very core.  My limbs feel heavy and hollow and my body doesn’t engage with my brain.  An example of it at it’s worst is waking up from a a healthy sleep, brain fully engaged yet unable to raise my arm to answer the mobile phone on my bedside table.

In my mind’s eye, I see my energy bar like the one computer characters have at the bottom of the screen (or had, I haven’t played a computer game in over ten years).  Like those little characters, if I collect a piece of fruit, my energy goes further into the green and if I get hit by an arrow, it moves it towards the red.  When I dip into the red, the fatigue monster raises it’s ugly head.

Through many crashes, I’ve learned my apples from my arrows, the boosters from the zappers, and how to preserve a healthy green bar.  It’s not about only collecting the apples and avoiding the arrows, on the contrary it’s about balancing them out, making considered choices, keeping you in control.

Apples – energy boosters:

• Wholesome natural food: fruit, veg, seeds, nuts, herbs and spices. Anything eaten in its natural form unmodified.
• Additional supplements.
• A healthy night sleep: between 6 – 8 hours uninterrupted.
• Water, water, water. Because I can’t stress this enough and something I’m still not great at myself.
• Rest  – you need to find your balance, as too much will become an energy zapper.
• Exercise – again, if you do too much of the wrong type at your stage of recovery, it becomes an energy zapper.
• Being generally active.
• Relaxation and meditation.
• Positive people who make you feel lifted after being in the company.

Arrows – energy zappers:

• Processed food.
• Caffeine.
• Sugar.
• Bad sleep or lack of.
• Work.
• Alcohol.
• Cigarettes.
• Medication.
• Healing – inside and out.
• General illness, like a cold or tummy bug.
• Stress and anxiety.
• Too much physical activity.
• Negative people.
• General socialising.
• Too much rest.

I will write a post in November about how I manage the apples and arrows.  From now until then, if you’re suffering with CRF, try keeping a little log each day of:

• What you eat and drink.
• How much water you’ve consumed.
• How much sleep you had and quality (something as simple as one – two – three stars), noting anything particularly disruptive.
• What you did that day generally, top line, note form.
• Fatigue levels / notes.

This may sound tedious but it’s a short term exercise that will pay off in the long run, I promise.

I enjoyed doing it at the end of each day, giving me something to do in bed to unwind instead of watching netflix.

This little log will help you see patterns you may have fallen into unknowingly – so you need to be honest with yourself.  It will identify your personal set of apples and arrows, so you can start making changes.

A month may sound like a long time, but it’s not really after everything you’ve been through.  I feel a month truly reflects your lifestyle and habits.  Ideally, and if you enjoy it, I’d highly recommend keeping the log going after you start making the changes enabling you to monitor the positive impact too.  Once you’re in full swing of your energy bar, this log becomes a boring pointless exercise and you’ll be able to put it in the bin.

Most of these energy boosters and zappers need a post of their own, and I will be covering them individually over time.

Wishing you a great evening.

Lulu x