Monday, 12 August 2019

Pacing, Planning & Pre-Cautionary Rest ~ Managing M.E

{This is an updated & more in-depth version of a previous post so please be aware that this is a long post. I had to take numerous rests, over a number of days while writing this post but I wanted to be thorough. So it is advisable, especially if you have M.E, to pace yourself & take rests while you slowly read through this}

Paper with different coloured writing on it &
a mirror reflection the background.

I know pacing & planning can seem a little daunting & feels like a lot of work! However, it is such a beneficial factor to managing your M.E symptoms, that learning how to do it, really is worth it & will help you in the long run. For anyone not familiar with these terms, it's the process of writing out & planning your days/weeks/months to help pace & monitor your energy levels.

My aim for this post is to help anyone who may be newly diagnosed & is looking for a way to manage their M.E, anyone who wasn't able to attend a specialised M.E Clinic {that's where I was taught this} or for anyone with M.E in general who feels they needs to rethink their activity level & may be stuck in the "Boom & Bust" cycle.

Here's a little disclaimer before we get started: I am not claiming to be an expert or specialist on this subject. Even after 6 years of diagnosed M.E, I don't always stick to my pacing & planning & my body definitely tells me when I need to get back to it!

Step One ~ Filling in a Week to View Sheet:

First of all you need to see where changes need to be made. The following will help you find out what your high energy activities are, if you need more or less rest in between certain activities, & if you need to make small or big changes to your day/week/month as a whole.

I use physical paper/planner & pens for all parts of my pacing & planning but you could do all this digitally as well with either a spreadsheet or your phone calendar, if you prefer.

Here's what you'll need:
  • A week to view sheet. You can make your own in a Spreadsheet App/Software, like Excel, Numbers or Google Sheets. Along the top put the days of the week & down the side put the time, starting with 6am through to Midnight. Then if you prefer, you can print it out. Alternatively, drop me an email via the "Contact Me" in the side bar & I can send you the one I have which you can print out. {Dates are not important}
  • Highlighters & a Black Pen: You'll need three colours of highlighters ready for Step Two. The black Pen is to fill in your sheet. If doing this digitally, keep the text black to start, then you'll need to change text to from black, to Red, Yellow or Green {you'll see why in Step two}
Once you've got your week to view sheet, starting with black pen/text colour fill out your week. Make sure you pick a week that you have no added extras, like an appointment or special outings that don't happen each week. For this to be most effective, you need to see an outline of a normal week, it'll be easier that way to judge your energy levels for each thing you do. Also not starting the week with PEM from the previous week would be beneficial as well.

You don't have to be too accurate with the times, just with what you're doing. I found the best & most accurate way to do this, is by living the week & adding in everything as you do it, {this is why using a paper copy is probably easier} that way your starting base will be more accurate.

Things to Include:
  • Wake up times, meal times, shower/washing times, bedtimes, Medication times.
  • Activities you may do like reading, working {if you're able} watching TV etc...
  • Any rest or nap times.
  • Basically EVERYTHING you do in a week needs to be written down. 

At the end of each day, you also need to make a note of how you feel symptom wise, how severe any Post Excursion Malaise you may experience is & also how you slept ~ how many hours slept, if it was a broken night sleep or painsomnia/insomnia.

Two images showing the week to view sheet. One is Blank. One is filled in with activity highlighted in different colours.

Step Two ~ Grading Activity:

You've reached the end of the week & you've a filled in your weekly sheet. Now you need to go through your week & taking your highlighters or changing the colour of the text, decide which activities you have done that are either High, Medium or Low energy.

  • Red/Pink: High Energy. Activity that takes the most of your energy.
  • Yellow: Medium Energy. Activity that takes a lot of your energy but maybe not all of it.
  • Green: Low Energy. Activity that takes some energy but no bed rest after may be needed.

This step can be quite eye opening! {I know it was for me!} It'll likely show you where you are maybe wasting energy or that you're doing too much on one day & using up all your body's energy. Keeping a note of your sleep may also highlight that you need to change up your nighttime routine to try & help you get more sleep. This can also make you realise that you need to take yourself back to your lowest baseline of activity to allow your body the extra rest days it needs to cope with anything you are asking of it.

Step Three ~ Planning Your Weeks/Months:

So now you have a better idea on where your precious energy is going & where you may need to pull some energy back from. You can now start planning out your coming weeks/months, making yourself a routine that best benefits your M.E, especially setting yourself a bedtime. Personally I do this on a monthly basis first & then break that down into the weeks of the month.

Here's What You'll Need:
  • New Week to View sheets {I made myself a years worth} with the "Week Commencing" Dates written in the top corner. Digitally, you can make a new spreadsheet for each week or use your phone calendar.
  • Alternatively you can use a proper diary or planner with Monthly & Week to view pages. 
  • Red Pen or Text for High Energy Activity.
  • Yellow Pen or Text for Medium Energy Activity. {I used Orange as its easier to see}
  • Green Pen or Text for Low Energy Activity.
  • An extra Pens/Text colours of your choice for Bedtimes, Rest periods & Pre-Cautionary Rest Days. {I used Purple for all of them but you could use different colours for each}
So you've got everything you need, now lets go through filling it in...

Pre-Cautionary Rest & Bedtime:

A good place to start is by adding in your chosen Bedtime & Pre-Cautionary Rest Days. The latter is basically bed rest days in which you give your body a full days rest to help you cope with whatever else you are doing in the week. Personally, I have Monday, Wednesdays & Fridays as my dedicated Bed Rest Days, you can have more or less depending on the severity of your M.E.
  • With your chosen colour, simply write "Bed Rest Day" on the days you have chosen for this.
  • Write in "Bedtime" in your chosen time slot for each day.

Planning Main Activities:

Now it's time to add in any activities that you do week in, week out; for example showers/bathing, meal times, when you get ready for bed. These activities are your basic needs & work or household  related activities {if you work or have household chores to do. Personally, I will add in any photo editing, writing or maybe even a little back garden outing}

When adding these in remember to colour code them using your original week to view sheet:
  • Red ~ High Energy Activity
  • Yellow ~ Medium Energy Activity
  • Green ~ Low Energy Activity

Pacing Activities:

As you plan out your week & add in your activities, you need to start implementing some Pacing. You can do this by taking a High or Medium Energy Activity & seeing if you can break it down into smaller steps staggered over 2 or 3 days. It's also good to limit how many High/Medium Energy Activities you do within a week.

To get the most benefit out of your Bed Rest Days, try to keep any activity, even ones you can do from your bed, to Low Energy Activities. Though not a low energy activity, I choose to shower on my Bed Rest Days so I'm not doing two or more High/Medium Energy Activities in one day.

Rest Periods:

Now your week is taking shape & you are able to see what you've got planned to do for the week. The final step is to bracket each activity you are doing, especially High & Medium Energy Activities, with periods of rest.

Let's use having a Shower/Bath as an example:
  • You have set your Shower/Bath time for 4pm. You have likely colour coded this as a High or Medium Energy Activity.
  • In the 3pm/3:30pm slot write in "Rest" in which ever colour you have chosen for tracking your rest times.
  • Repeat the above in the 4:30pm/5pm slot {depending how long your Showers/Baths, followed by drying & dressing takes}
{Of course, like myself, many of you will likely need to sit for a little while straight after your Shower/Bath before getting dry, putting clothing on & maybe doing your skincare.}

Balancing out each activity with rest & relaxation can help your body cope a little better with whatever you are asking it do. It can also help, if only in a small way, to control the Post Excursion Malaise that comes after ever single activity you do, such is the nature of M.E sadly.

Step Four ~ Bedtime Routine:

The final step to all this is to make yourself a Bedtime routine that will hopefully help you to get some better nights sleep. Even if you struggle with actually sleeping for a solid 7 ~ 8 hours a night, having a routine to help you relax & rest at night, will still be of some benefit as it's likely the time you'll get a better quality rest than during the day. Also starting it a good couple of hours before your allotted Bedtime means you hopefully won't completely run out of energy before the day ends.

On my Bed Rest Days, my bedtime routine actually starts after my 4pm Shower. I get in clean pyjamas, do my nighttime skin care, have dinner, get back into bed & maybe watch some TV or check my social media. Then at 9pm, the TV goes off, the phone & iPad is put away & I pick up the book I'm currently reading & escape into it until around 10pm ~ sometimes a little later depending on what I'm reading, though I'm slowly getting better at stopping in the middle of a chapter. By 11pm at the latest my light is off & I lay with my eyes closed.

On my none Bed Rest Days, when I've had the afternoon downstairs, I'll make my way to bed after dinner around 6 or 7pm, do my skin care, get my sleeping pyjamas on & get into bed. Again I may watch a little TV or check Social Media but like the Bed Rest Days, everything goes off at 9pm & I read until 10 or 11pm.

Some nights I have no trouble falling asleep, others I sleep & wake almost every hour & then other nights I'm still awake at 3am due to high levels of pain. But I still try to not pick up my phone or iPad, {I actually have my devices set to "Do Not Disturb" from 9pm & "Sleep Mode" from 11pm so I can't access any non essential Apps} So I'll either read my book for little bit again or I'll go on my phone only to put an audio version of my Bible on low, which can often help me fall asleep.

Step Five ~ Something Fun:

Trying to manage your M.E can take quite a bit of work & some days it can get the best of you & all you want to do is hide under your duvet & cry, which is understandable & totally fine ~ I have certainly been there!

So, if you are able to, try to add one small activity a week that is something fun & benefits your mental health. This can be a hobby of some sort that you enjoy doing or a very small outing to get some fresh air either in the garden {if you have one} or a little further from home.

Step Six ~ Making Adjustments:

You've got your week all written out & you're beginning to get into your new routine. Just don't forget to still monitor your symptoms, energy levels & sleep habits for each day. Doing so will help you make any necessary tweaks if you find that you're exceeding your energy levels, or you need to give yourself longer rest periods before & after certain activities. Also you may find that limiting yourself to one High/Medium Energy Activity a week is more beneficial & may help with the severity & frequency of the Post Excursion Malaise you will experience.

Keeping a check on your energy levels will also help you know when you feel you are able to add a little something else to your week & see how your body copes with it. Starting from your baseline activity for a good few weeks, {doing mainly the basic essentials} then slowly & steadily increasing your activity is much better than crashing your body by trying to do too much, too fast. 

How you plan your week is entirely personal, what you're able to do is extremely personal, as is how you rate whether something is a High, Medium or Low Energy Activity. We all cope differently with different activities but please make sure you don't plan to do more than you can handle. Being realistic about your limitations can be difficult but it's essential to helping to manage your M.E in a way that is beneficial, especially if you're trying to get out of the "Boom & Bust" Cycle. Ultimately, listen to your body, you know what is best for you!

Side Note:

Any special events you are hoping to do, big outings or even having visitors, all need to bracketed with larger amounts of Pre-Cautionary Rest. So, maybe instead of just one Bed Rest Day before the activity, adding in at least one more Bed Rest Day should hopefully help you gain a little more energy for the activity. Then afterwards, give yourself a number of Bed Rest Days to help your body recover properly from the Post Excursion Malaise.

Also in this regard, it's important to make sure that whatever special activity you are thinking of doing, make sure it's worth. As I've mentioned & as I'm sure you will know, having M.E means experiencing Post Excursion Malaise for every little thing that you do. This will affect you mentally as well as physically, so when your symptoms are all worsening over a number of days from the activity, you want to make sure that you don't then regret whatever you have done.

A Month to view in a Planner
I know all of this is a lot to take in & can be very overwhelming. It can also take a lot of energy to do, but in the long run, it will be worth it, I promise.  Please remember that although sticking to your weekly plan is important, nothing can change the fact that M.E is an ever fluctuating disease & while Planning/Pacing/Pre-Cautionary Rest can help mange your M.E symptoms, it's also important to take each day as it comes. It's all a question of balance, remembering that Planning, Pacing, Pre-Cautionary Rest doesn't work in the same way for everyone. After all the years of doing this each Week/Month, I still have times when the plans go out the window: activities are cancelled & all I can do is lay in bed, resting my body.

Once you have been doing this for a while, you will begin to learn which activities are High, Medium & Low Energy & you may find that you no longer have to colour code them, along with your Rest periods. You may even find that just using a proper planner or diary in time is sufficient & no longer need your original weekly sheet. One with a Week & Month to view is best & if the day columns have the time of day included, then this would be even better.

A week to view in a Planner.
I'm now at this point. I use a planner from Personal Planner & I spend a little time at the beginning of each month planning out my Month. Then each Sunday evening when I go to bed, I review the week a head so I know what I've going on ~ appointments, a visitor coming or simply a week of no extras. Something else that I have found from doing this, is that it gives me a little a sense of purpose & structure, something that my chronic illness had taken away from me for a very long time. Personally, I have always thrived from having a routine & even now having M.E, I've found it's no different & in someways, it's even more of a benefit.

I really hope this little overview into how to use Planning, Pacing & Pre-Cautionary Rest to manage your M.E has helped those of you thinking about doing it or have heard the terms thrown about but were unsure exactly what they mean or how to get started.

This week the M.E Association is discussing Pacing & M.E management over on their Social Media platforms. They'll be lots of great advice & tips to help you learn more about how Pacing is one of the best methods you cam implement for your M.E. They're on Facebook, Instagram & Twitter {Just search ME Association} & I really do recommend checking them out & giving all their socials a follow.

If you have any questions on this topic please leave me a comment below or send me an email. Or if you're already Planning & Pacing but do it in a different way, then feel free to also leave a comment sharing any tips on how you do it. While the method I have taken you through has benefited my condition the most, I'm always looking for any other ideas to help.

Hope you're all as well as can be & are taking care,

L x

Friday, 9 August 2019

National Book Lovers Day 2019

Today is National Book Lovers Day. Somehow it had completely passed me by until my lovely friend Pippa just posted about it on her page, Life of Pippa. Although I've posted about it on my Facebook page & Instagram, I thought I'd put together a quick post for here as well {I know it's late in the day but basically I'm channelling all my anxiety from the huge thunder storm that's going on right now into writing this!}

From an early age I have loved reading books especially as they give me the ability to travel to different places ~ real or imagined! As a child I grew up reading Beatrix Potter, A.A Milne & Roald Dahl. I was fascinated by all the different worlds & characters from each author's books. Then when I was about 11 years old, I read my first novel, Pride & Prejudice by Jane Austen, a book I have re-read more than any other book! I recently got myself a new copy as my original is in a bit of a sorry state.

Pic Description: A book with a hand on it & cup of tea.
As well as reading books from an early age {I could read before I went to school} I also found growing up, I also had a love for writing & would even put little news articles & papers together with my childhood best friend - I would do most of the writing using my electronic typewriter & she would then add a few illustrations to go with the stories. I don't remember what happened to the ones we did or really what the subjects of them were - I vaguely remember writing a review of one of the Wallace & Gromit animations! But I do remember loving the act of writing & getting my thoughts out, something that I embraced again in the early years of blogging.

I find it interesting that somethings, hobbies passions or occupations seem to be built in us almost from birth, like they're in our genetic make up. Writing & a love of books is in my blood on my Dad's side of the family, on his Dad's side of the family {so are all my defective chronic illness genes but we'll let that slide for now} My great aunt wrote a book about her childhood during WWII when my Grandad was a toddler & their Dad, my Great-Grandad, wrote a number of books & was quite a prominent Journalist, especially during the war. I recently found out he also won Journalist of the Year in the 1950's. I learning this I felt like I had gained a little bit more incite into myself as at one point in my life, I too was hoping to become a Journalist! So books & writing have definitely played a big of who I am.

Writing a book has always been a dream of mine & now more than ever I feel like I have a story inside me that I want to tell somehow {non-fiction}. A little while ago I put together an outline of some chapter subjects & I have an idea of the style I want to write it in. I just need to start fleshing out the chapters & see how I get on. So you never know, one day, I'll be writing a post all about my own book, instead of talking about other people's!

now let's get back to books. This past year I have really upped the number  I’m reading & I recently re-activated my Goodreads account & have also made myself a Book Journal {post about that coming soon} to help me keep track of them & help with any book reviews I want to write for this space. So far I’ve read 14 books this year, though 3 of those are re-reads.

Picture Description: A wall in a bookstore with a quote from C.S. Lewis written on it. :You can never get a cup of tea large enough or a book long enough to suit me."

I think my favourite fiction of the year so far is Veronica Roth’s Duology Carve The Mark & The Fates Divide. Roth's world building in these books is just beautifully immersive, each planet we followed the characters to, I felt like if I closed my eyes, I would be there with them. I was also so captivated by one of the main characters of both books, Cyra, as she lives is high levels of pain every day & I found her thoughts at times quite relatable.

My favourite non-fiction so far has to be Jessica Taylor-Bearman’s The Girl Behind Dark Glasses. It details Jessica’s early years with Very Severe M.E. The subject matter isn’t the easiest to read about, especially having M.E myself, but it’s such an important story that more people need to be aware of! Jessica's positivity & kindness while enduring the things she did in trying to find treatment for her disease just jumps off the page & encouraged me to keep going while dealing with my own life with M.E.

My current read is Little Women by Louisa May Alcott. After reading a few books with some heavy subject matter, I needed something more comforting & familiar. This is a re-read for me, but I'm reading a new copy I purchased a little while a go ~ I'm a sucker for a beautiful book cover & this one doesn't disappoint!

I’d love to know what your favourite book of the year so far is or even of all time? I'd also love to know what you're currently reading & if you have any recommendations, please feel free to leave them in the comments.

Take care & happy reading!

L x

Tuesday, 6 August 2019

Six Year Anniversaries

This started life as a Facebook post for my Louise's Little Life page but as I began to write & think more & more, it turned into an unexpected blog post. So here it is for your reading pleasure...

Pretty much all of my Facebook memories feel like snippets from another person’s life, detailing the things I enjoyed but now can no longer do, most of them relating to Horse Riding & spending days at the yard I rode at or with the Horse I use to train for work. They can be difficult to read through & I often wonder why I bother looking at them. I regularly resolve to never view them again & then the next day, I’ll find myself scrolling through them again the next day. I’m a glutton for punishment I guess.

But for all the sadness I feel around my lost life, every now & then, I see memories that give hints to symptoms of M.E pre-diagnosis, which I find interesting. Ones where I seem to have had one illness after another, ones where I mention how incredibly tired I am or things like the one that popped up a couple of weeks ago from 2011, mentioning that I’d just tried to put the kettle in the fridge!

At the time I would have laughed it off as a momentary lapse of concentration. But now I see it as a little sign of the cognitive dis-function (Brain Fog) that comes with M.E, no matter whether you have mild, Moderate or Severe. That memory was 2 years almost to the day before my diagnosis. Looking back, I now know I was on the milder side of M.E then. By the end of 2012, I was heading towards more Moderate M.E & by 2013 when I was finally told what was wrong, I was Moderate/Severe.

My diagnosis Anniversary was 6 years ago at the end of July& on the scale of Mild/Moderate/Severe, I’m still very much the bottom end of Moderate, being mostly housebound & spending at least 3 out 7 days in my bed.

Picture Description: Yellow Jumper with a Yellow Dosset box.
Diagnosis Anniversary’s are always strange. One never knows whether to celebrate them or not. While my M.E diagnosis came with relief, it was also the one out of the three I’ve had that changed my life the most & though I’m at the stage where I’m more accepting of my new normal, I’ve never been fully on board with celebrating it. "Happy Diagnosis Anniversary" doesn't really sound quite right even though, when living with a chronic illness, it is certainly an achievement to get through another year, though it's another year that you've been sick. You see the dilemma!

So personally, I allow it to pass by quietly, usually with just a post on here marking it as it’s also around this time that I’ve had this little space for another year as well. While I’m not sure about celebrating my diagnosis day, I do feel proud of my blog & what it is slowly growing into over the past 6 years. I definitely love this one more than my first blog.{#bloggingbeforeitwasajob!}  It's definitely a positive to come from a negative situation as I started this space in connection to my M.E diagnosis.

I’ve had many comments over the past 6 years from others who have said that they’ve come across my blog after a google search for M.E & that some of my posts have helped them. While it saddens me that so many others have to deal with this debilitating disease, it’s lovely to be able to support & help others in this small way; the online M.E community is so important & definitely a blessing when living with this disease. Then there's the small number of people who aren't ill but want to learn more about M.E & life with the illness, who have told me how much they have learned in relation to M.E & that makes me so happy!

This blog has changed over the years of my writing it. I read back over old posts & sometimes they make me feel the same way as looking at my Facebook memories do. The changes really reflect how I’ve changed & how my life & attitude towards living with chronic illness has changed. While I want to stay true to the original reason I began this space, to write about my experience with chronic illness, (mainly M.E) I also want to carry on weaving in more posts on other topics, about some of the things I enjoy, they will likely be photography or probably more book related as I have already decided I want to try & write more book reviews.

Picture Description: Blog Header. White background, with Louise's Little Life  in middle surrounded by leaves with a camera, laptop, books & tea on either side.

{You’ll also notice I’ve recently changed the name slightly to my full first name, Louise, rather than a shortened version of it, Lo, & added a header image which I managed to make myself!}

I guess this is one of my more reflective while writing posts, which no centred point. Just me, writing out my thoughts, which I find really therapeutic. But I do have want to end with a huge thank you to you, my readers. I really appreciate every single one of you that takes the time to read even just one of my articles & as such I’d love your incites going forward.

I’d want to hear what you, my dear readers would like me to write about, it could be illness relate or not, it could be a series of questions you’d like me to answer, again illness related or not. So feel free to leave me a comment with your suggestions or send me an email via the contact me box in the side bar.

So as I head into my 7th year of M.E diagnosis & this little space, I'm looking forward to seeing this place grow more & develop.

Thank you all again,

L x

Monday, 22 July 2019

"This Is Going To Hurt" ~ Adam Kay {book review}

Picture Description: The book This Is Going To Hurt with a jar of little lights & a Sherlock Holmes figure beside it on a bookshelf.

After seeing my lovely friend Pippa mention this book on her Instagram & knowing she has great taste in books, I immediately added this to my "Books to Buy" list & not long after I purchased it from Waterstones.

Before I get into my thoughts on this book, I will just say that if you are going to pick this up to read, please be aware that it's an adult, non-fiction. It's full of medical terms {footnotes provide their meaning} & some quite graphic descriptions of medical procedures, mainly centred around Gynaecology & Obstetrics {Pregnancy & Births basically} as this is the area of medicine Adam specialised in.

Also please be aware that it's got quite a few curse words, which is something I'm personally not a fan of & block them out while reading.

"97-hour weeks. Life and death decisions.
A constant tsunami of bodily fluids. 
And the hospital parking meter earns more than you.

Welcome to the life of a junior doctor.

Scribbled in secret after endless days, sleepless nights and missed weekends, Adam Kay's diaries provide a no-hold-barred account of his time on the NHS from line. Hilarious, horrifying and heartbreaking, this is everything you wanted to know - and more than a few things you didn't - about life on and off the hospital ward."

{blurb from back on the book}

The book itself is laid out in 10 chapters, with an introduction before turning into diary entries. Each section shows the progression of hospital doctors & surgeons here in the U.K. as they work their way towards becoming a consultant. I'm sad to say, I am much more familiar with the terms of progression for surgeons in the U.S thanks to many many years watching Grey's Anatomy. So it was nice to gain that information & what each level {in want of a better word} means & what responsibility is gained.

The book as a whole is incredibly eye opening to say the least. Adam describes long days & even longer nights caring for patients on & off the wards he worked on. The struggles of just becoming familiar with the lay out of one hospital & then being moved to another one, which may even involve a longer commute, which in turn impacts valuable sleeping time.

The diary entries usually centre around patients but in a number they also related general goings on of the long shifts Adam worked. Some stand out ones for me where the following:

  • Struggles of working in the clinic & seeing double the amount of patients that the allotted time will allow, resulting in patients complaining about long wait times.
  • Entries relating how in one hospital Adam worked in, to save money, the powers that be decided to remove the mattresses from the "on call" rooms instead of spending the money to replace them!
  • Realising that the parking metre in the hospital car park earns more an hour than the doctor working to save a persons life!
  • When working as a Ward Cleric means you were forced to take breaks every couple of hours because the working laws require it of anyone working at a computer. But when you're working as a doctor, breaks are non existent & any sleep you may get is usually interrupted.

There's also entries of many missed family events, holidays & having any sort of life outside the hospital, which in turn impacted all of Adam's relationships. The sacrifices hospital doctors & surgeons make to help people is amazing & often forgotten. Instead, they're shouted at when waiting room times are "too long" or they don't have all the answers - this last fact is often down to the fact that most doctor's specialise in one area of the body {even GP's have specialised areas} & yet they all have to mug in & help out on wards, clinics & A&E when there's a shortage of staff. So sometimes they have to see patients with problems that they may not have dealt with since the early days of their training.

"... You can't wear a black armband every time something goes wrong..."
{excerpt from Chapter 10}

As someone with a disease that many doctors still believe doesn't exist, has no known cure or treatment plan, doctor appointments have been very frustrating & upsetting on more than one occasion, but that is on the General Practitioner level. It can leave you feeling despondent towards doctors in general & even feeling anxious when you have an appointment with a new doctor. But personally, there have also been positive appointments, ones where I have felt listened to & supported & those appointments are the ones that you can use to remind yourself that not all doctors are the same. There are so many variations that come under the title of doctor & as a patient, it can take some effort to separate them all, especially if your chronic condition lands you in hospital multiple times.

This book can remind you that no one enters that profession for the great working hours or pay. Just about everyone that wants to be a doctor & reaches the goal of becoming one, does it because they care & want to help people. Putting yourself in their shoes, coming up against an illness very little is known about or out of your specialisation must be just as frustrating for the doctor as it is for the patient.

"... And, in truth, doctors can't acknowledge how devastating these moments really are. If you're going to survive working in this profession, you have to convince yourself these horrors are just part of your job. You can't pay any attention to the man behind the curtain - your own sanity relies on it..."
{Excerpt from Chapter 10}

Overall, the subject matter brought to light in this book is important & a conservation about them is definitely worth having. This book left me feeling like it should be required reading for everyone being treated by the NHS, especially those of us who are often spending time on hospital wards. Opening your eyes to what the doctor you're being treated by has to go through daily, may just serve as a reminder that really you should treat them with kindness as they endeavour to do their best to treat you & get you back home where you want to be.

Finally, the most important & maybe the most scary thought highlighted by Adam's account of life as a doctor, especially as a patient is: Your doctor is just as human as you are!

Have you read "This Is Going To Hurt"? I'd love to hear your thoughts about the important issues raised in this book. Please feel free to leave me a comment, I'd love to discuss it with you.

L x

Monday, 17 June 2019

Loneliness & M.E {Loneliness Awareness Week 17th-21st June 2019}

This week, the 17th - 21st June, is Loneliness Awareness Week. It was started by the Marmalade Trust three years ago to raise awareness of loneliness amongst people in the U.K. The Marmalade Trust is a charity that was founded by Amy Perrin back in 2013. They are dedicated to dealing with the issue of loneliness & helping connect people around the country. If you want to know more about the Marmalade Trust, I really recommend checking out their website. & if you'd like to know more about Loneliness Awareness Week & how you can get involved, then you can check out the dedicated page on their site, here.

This year's theme is "to reduce the stigma around loneliness" & as I analysed my connection to this topic, it's quite a fitting one. There is an element of embarrassment & shame that comes with admitting you're lonely. No one wants to be called "Billy No Mates" but fear of getting that label can stop people opening up about the fact they're lonely. This has definitely been my experience as it's a topic that, although I've alluded to in the odd blog post, I've never dedicated a post to the subject. Which, when you consider how isolating & lonely living with M.E can be, it's quite surprising! But, with this post, that's about to change...

Quote Reads: The loneliness moment in someone's life is when they are watching their whole world fall apart, and  all they can do is stare blankly. F. Scott Fitzgerald

I will preface the rest of this post with the fact that I am an Introvert, I've never been someone who has had lots of friends & I do enjoy my own company. However, there is a big difference in being alone & feeling lonely; I have experienced both - as a child, a teen & now as an adult & while I find being alone somewhat refreshing, feeling lonely is difficult & it doesn't get easier the older you get.

By nature we are all different, some of us find it easier to make friends than others, it's just the way we're wired & there's absolutely nothing wrong with that. However, when you factor in a chronic illness like M.E, making friends & socialising becomes even more difficult. There are many factors as to why but I'm just going to highlight a few of the main ones:

  • M.E plays havoc on your sensory system - this means you become highly sensitive to light, sound, touch & smell.

I want you to think about a social gathering with your friends or family:

The room is well lit. Everyone is talking & laughing, the TV may be on or there's music playing. Hugs, handshakes & a friendly slap on the back or nudge on the arm may happen as people converse. Food smells come from the kitchen. This gathering is a feast for your senses & you enjoy every moment of it.

Now imagine you have M.E & you're faced with the same gathering:

The light in the room causes pain to your eyes, the noise around you is painful to your ears & starts to bring on a headache. Every hug or friendly nudge someone gives you causes your body to react with searing pain & the mixture of food smells make you feel nauseous! All of these cause your brain to go into sensory overload & it's struggling to string a sentence together for you to hold a conversation!

All of those things make it incredibly difficult to socialise & makes a person with M.E incredibly ill for even trying. The adverse reactions to a normal social gathering results in most people with M.E having to isolate themselves for the good of their health. We have little choice but to spend most of our time in bed, in darkened, quiet rooms.

  • Constant Fatigue & lack of Energy

Even without the sensory issues, doing anything takes up a lot of our energy. Our bodies do not produce or recover energy properly; a goodnight sleep won't revitalise us. This means that trying to socialise with friends or family becomes a huge activity & every moment has to be planned & paced. Energy is used when getting ready & traveling {if it's not at your own home} So by the time you're at the social event, you feel like you're running on empty & don't have much more to give. Socialising becomes increasingly difficult as the last ounce of energy drains from you, you feel incredibly ill, your struggling to remain standing, to speak to people, you turn a lovely shade of grey & you've only been there for 5 minutes!

This results in you returning home & spending an unnumbered amount of days in bed, in a darkened, quiet room dealing with the Post Excursion Malaise {worsening of symptoms after activity} that results from 5 minutes of social interaction.

Photo Description: "The Onlooker" A women sits on the kitchen side staring out of the window.
Copyright Louise Elizabeth Shepherd

  • No concept / understanding of Chronic Illness results in friends & family drifting away.

Being chronically ill makes you a bit of an enigma. People completely understand short term illness, like flu, colds, & tonsillitis. They also understand terminal illness, like certain types of Cancer - illness that results in the loss of life. The latter usually causes a massive rallying of friends & family who stick by you while you're sick, supporting you during the difficulties you face.

But many people cannot wrap their head around a never ending illness - one that you may see some remission in or you may loose your life to; an illness that is always with you, affecting your daily life. M.E is such an illness & the impact it has your life can be incomprehensible at times.

The truth is, the examples of social gatherings I gave above, are just that, examples, the majority of people with M.E are too sick to even entertain the idea of socialising, especially when even a one to one visitor for a short time, can leave them feel very ill for a number of days. This results in often having to say no to any or all invites you may get.

At first your friends & family are okay with this - "your health is important", "I understand, you're sick". But the longer you are ill, the less understanding some of those in your life become - "you're still sick?" "There's no point asking you, because I know you won't come". The less understanding ones pretty much all drift away & in many cases, the person with M.E is left friendless, completely isolated & on top of everything else they have to deal with, they are now struggling with feelings of loneliness.

  • The M.E Paradox

This is having people in your life who try their best to help & support you but through no fault of their own simply are not able to fully understand just how much this illness effects you. You see the thing is, no one gets it, until they get it! This again can leave you feeling incredibly lonely especially when you feel that someone may understand but then something happens to make you realise that actually they don't, at least not fully. It's the personification of the saying "You can be in a room full of people & still feel lonely."

All anybody wants is to be understood by someone else but having M.E makes that so difficult & it can make you feel like the only person in the world standing still in time as everyone around lives their lives to the full!

Quote Reads: I couldn't be with people and I didn't want to be alone. Suddenly my perspective whooshed and I was far out in space, watching the world. I could see millions and millions of people, all slotted into their lives; then I could me - I'd lost my place in the universe. It had closed up and these nowhere for me to be. Marian Keyes

As someone with M.E, you already have a lot to cope with daily but adding in feelings of loneliness due to the factors mentioned above can make it a real struggle & these feelings can even escalate into Depression or Anxiety. This then makes life even harder as you now contend with, not only a physical life long condition, but also mental ones.

This is where the online M.E community is so so important! As, although the people physically around can't fully understand, these people can. They can offer support, a listening ear, & a genuine, comforting "I understand!" & even a "Me too!" They'll even help you celebrate your small victories because only someone with M.E will truly get just how difficult that thing you managed to do was, since they have struggled to do it too.

Another wonderful resource for people with M.E is provided through the M.E Association They have a service called M.E Connect which you can either call or email for some support. All information is confidential & most of the M.E Connect team have had personal experience of M.E. They can provide you with a very understanding, listening ear or can help point you in the right direction for information in something relating to your M.E, whether it's regarding employment or something else. Also if you do phone them, you're not given a time limit, the call will last as long as you need it to.

You can email them anytime using the address:

The phone service is available every day of the year during the following hours:

10am - 12noon
2pm - 4pm
7pm - 9pm

Phone Number: 0344 576 5326

While the online community or the M.E Connect service may not fully take away your feelings of loneliness, it can help ease it & reassure you that you're not alone.

So this week, for Loneliness Awareness Week, lets try "to reduce the stigma around loneliness" by talking about it & hopefully each of us will feel a little less lonely because we know we're not alone in the way we feel & that there's nothing to be ashamed or embarrassed about by feeling that way.

Take care,

L x

Friday, 17 May 2019

Blue Sunday 2o19 ~ M.E Awareness Day {12/05/2019}

I have spoken about this in a couple of posts over the years & I know I'm likely to be repeating myself but I really wanting to do a write up on this year's M.E Awareness Day.

The Sunday of M.E Awareness week {which this year was M.E Awareness Day} has come to be known as "Blue Sunday" a term which was coined by my wonderful friend, Anna. A few years ago, Anna decided to hold a tea party for M.E Awareness Day, to help raise much needed funds for the M.E Association & shed some light on this awful disease.

Photo Description: collage of 4 pictures of three people & a teddy bear with cups of tea & cakes.

Each year, Blue Sunday grows & more people join in. You see, the wonderful thing about Blue Sunday is there is a virtual element to it. There's an event page on Facebook where you can post comments & pictures. Alternatively, you can also join in by using the hashtags #teapartyforME & #BlueSunday when you post a picture of yourself having tea {or any beverage of your choice} & cake {or any food of your choice} on any of your chosen Social Media. It's mainly people with M.E who join in & doing so can really make you feel less alone & reassures you that there is a whole community out there who totally understands what you go through day to day.

This year, I had hoped to hold my own little tea party for my family, but as the 12th of May drew closer, I decided it would be better for my health to have my own virtual tea party, like what happened last year. So my fabulous mum sent a message round to all my family telling them about it & then on the day, she set up a Blue Sunday WhatsApp group. Throughout the day, my family members were sending me messages & pictures of them joining in with Blue Sunday. I also used it as an opportunity to educate my family about M.E as the only one who truly knows how bad it can get is my mum.

Photo Description: collage of 3 pictures with 1 person, a dog, a cat with cups of tea & cake.

I have to say, their response was utterly overwhelming. It was lovely to have their support on a day that is dedicated to making this invisible illness seen & to know that they care. It's incredibly easy to feel alone & left behind when you have a disease that means you're pretty much housebound & having visitors can be incredibly difficult. But they really came through for me & I really appreciated it.

I spent the day chatting in the group & also doing my best to keep up with everyone on my Instagram who was also joining in, while also making sure to have a break & rest. My sister in laws had me in tears at one point, with they lovely messages, they made me feel very loved! Everyone's tea party pictures online were so wonderful & it was wonderful to see so many more people getting involved.

Photo Description: collage of 5 pictures with 7 people with drinks & cake

The main thing about Blue Sunday, is of course to help raise funds for the M.E Association & my most of my family really came through on that part too! Together we've managed to raise over £100 & at the time of writing this, I'm still waiting on a couple of other promised donations!

Anna's Blue Sunday tea party & campaign was a huge success! She opened up her Blue Sunday Just Giving Page from last year & raised the target amount to £2,000. While the total donated so far includes last year's Blue Sunday, Anna has worked out that this year's Blue Sunday donations have reach over £1,000 & the £2,000 target has been completed blown out of the water! There are no words in the English language to describe how amazing Anna is, she is definitely a shining light {but not too bright because, you know, light sensitivity & all that ;) } in this dark M.E world! Being her friend & being able to support her & through her, the M.E Association, is truly a privilege! I'm very proud of you! <3

Photo Description: collage of 5 pictures with 9 people with drinks & cakes.

To end the day, my parents & I had a little outing to one of our areas landmarks, the Ashton Memorial at Williamson Park in Lancaster {UK}. For the past few years, on M.E Awareness Week/Day the lights on the building turn blue, to show solidarity for people with M.E & hopefully to raise awareness.  In the years gone past, I have only seen this from my bedroom window, but this year, I wanted that to change, so I spent the week in bed resting ready for my outing.

I was hoping to get up close to it & to be able to do a Instagram live video to show it to all my fellow sufferers. However, when double checking how to get into the park, I quickly realised that it would be incredibly difficult & my M.E riddled body just wouldn't be able to make it. So we as we drove past, I noted a spot that I would be able to get to to take some photos on the other side on the parks fence. We had to wait for the sun to set to be able to see the lights show up on the building, so we headed to a road that I'd stopped on before to take photographs. It has a high vantage point & you can see right across the area I live & into the next county!

Photo Description: collage of 4 pictures with 5 people with drinks & cakes

Once the sun was low enough, we headed back to the side of the park. I then shuffled my way to the fence & managed to get some photos of the Ashton Memorial in its blue glory. I also popped a picture on my instagram stories, so everyone one my fellow M.E suffering friends could see. It was hard to get a picture as there was a mesh fence just inside the main fence but I'm so pleased with the photos I got.

My body held it together well all of M.E Awareness week & I was so proud of what I managed to accomplish, especially being able to see Ashton Memorial go blue in person, was definitely a highlight! The Post Excursion Malaise began to hit as soon as I got back in the car & I have spent this week in bed recovering but it was all so very worth it!

Photo Description: a building called the Ashton Memorial with blue lights on it.

To finish this rather lengthy post off, I just want to say that I'm proud of all of my fellow M.E sufferers, whether you were able to raise some awareness or not, you are all superheroes for coping with this disease day in, day out. I also want to say, I'm super proud of my family, you did amazing in your efforts on Blue Sunday & I'm so incredibly grateful!

If you would like to donate to Anna's Blue Sunday Just Giving Page, please Click Here

If you would like to donate to the M.E Association directly, please Click Here

If you would like to know more about the M.E Association, please Click Here

Take care,

L x

Tuesday, 14 May 2019

Thank You! ~ M.E Awareness 2019

Photo Description: Awareness ribbon on a spoon.

I just want to say a massive thank you , everyone who has liked, shared & commented on my posts last week. Your support means the world not only to myself but the entire M.E community.

Sunday evening, I managed to go out for a little while {more on that outing to come} but by the time I got to bed Sunday, the week of extra time on social media & writing blog posts, keeping up with the wonderful virtual M.E tea party my mum had set up on WhatsApp for my family {photos & blog post coming soon} plus getting out all caught up with me.

The Post Exertion Malaise hit pretty bad. Yesterday was a write off. Breathing was a struggle, as was eating & drinking. Sitting up was incredibly difficult & the crutches were back out to help me navigate the short trip to the bathroom. All of my more acute symptoms worsened & I spent my day in quiet & darkness, only being able to look at my phone for a few minutes.

Today, thankfully, the acute symptoms have eased a little. My legs are still shaky but I managing without my crutches. The fatigue, pain & cognitive issues are still higher than normal & eating is still so exhausting! All curtains & blinds upstairs are closed as light is just too much for my little eyes. I’m sitting up a little more & have been able to stand a little more noise but my body & my brain still feel very overwhelmed!

I have so many comments & messages to reply back to {over 50 from my Tea party group} but please be patient if one of them is from you. It has taken me a long time to think & type this out {love predictive text!} So it’s going to take a little while to feel okay enough to get through them all.

L x