If you follow my instagram (@livinglifefree__ cheeky plug) then you know I talk about being a spoonie. But for those outside of the chronic illess community, you might be wondering what it actually means.
It all comes from ‘Spoon Theory.’
Spoon Theory is a metaphor to help people with chronic illnesses describe their struggles.
‘Spoonie’ was taken from student Christine Miserandino’s blog post ‘The Spoon Theory.’ Back in 2010, Christine friend asked her what it was like for her to live with Lupus and she had to think of a creative way for a healthy person to understand her illness in a way that was easy to imagine. Hence the spoon theory was born.
So what is it?
Imagine that a person with a chronic illness has 10 spoons for the day. Each activity they do takes a certain number of spoons.
For example, getting up in the morning on a good day may take one spoonl because even on a good day it can be hard, or driving to work may take a spoon from your day.
To put it simply: spoons are physical representations of energy.
While healthy people may have unlimited spoons, spoonies only have a set amount to work with per day.
You can borrow a spoon from the next day if there is more you have to do, but that means that tomorrow you have less spoons to work with.
Things like cooking, being social, exercise and work all take up spoons but less obvious things that healthy people take for granted also take away our spoons. Getting dressed, listening to music, reading etc, all these things can take away from the daily spoon limit meaning spoonies have to be aware of their energy budget.
So when I talk about being an spoonie, I mean that I am a member of the chronic illness community and can often use the spoon theory to describe my life with chronic fatigue syndrome.
If you want to keep up with my fun and funky spoonie life, make sure to follow me on instagram or subscribe!
One of the symptoms of Chronic Fatigue is insomnia. Thankfully for me it doesn’t show up too often but when it does, its a bitch.
Once in a while, I’ll have a night where I lie in bed, completely unable to sleep. Then I get frustrated that I can’t sleep which makes it all worse and the cycle continues. I’m sure you get it right? It happens to everyone once in a while.
Problem is, one night of no sleep can knock me for days. Right now, I am exhausted in a way that has completely stripped me of any ability to focus on tasks that require mental energy.
That means things like work, cleaning, updating my social media, washing my hair, cooking etc. Anything that requires active engagement suddenly becomes 10x harder for a few days afterwards.
Since I’m not a student anymore, I actually need to work a good amount of house (because rent is a thing.) Issue is, after a night of no sleep, I have no ability to focus and hence can’t work without triggering a huge dip. That just adds to stress since it adds to financial worry.
Living with a chronic illness affects so much, everyday. It affects work, finance, relationships, friendships etc and so a sleepless night hits hard.
Things to do when this strikes
There are tons of guides on how to go to sleep when you can’t. As much as I’ve tried, most of these techniques just don’t work for me, so here are a few things you can do when you can’t sleep to make the experience a bit less rubbish.
I don’t know about you but when I can’t sleep, it sends me into a panic because I know of the consequences. Taking time to acknowledge the reality of the situation and try to stop panicking can help you feel a tad better. Meditation can help calm the mind and put you in a better mental state to face the rest of the night.
Have a cuppa
Call it the British in me but a good cup of tea is always a good way to help relax. Put the kettle on and make yourself a hot drink but make sure it’s decaf. Adding caffeine to your body is not going to help!
Get out the room
If you can’t sleep, staying in bed can actually be a detriment. The location becomes a stressful situation of tossing and turning so stepping out of that situation can be really helpful. Maybe go down to the kitchen and make yourself that cuppa?
Lavender Lavender Lavender
In my previous blog post, I mentioned how much I love Lavender essential oil to help me sleep. There are so many awesome lavender products as well as oils, such as lavender teddies that you can put in the microwave (they’re so cute!). As well as being good to help sleep, lavender is a relaxing scent in general so if you’re like me and panicking at 4am that you need to be awake in a few hours then a bit of lavender to calm to the mind can help.
Sleepless nights suck and they suck even more if you have a chronic illness. Sometimes there is nothing you can do but power through. Make sure you take it easy over the next couple of days and cut yourself some slack.
Something huge has happened guys. I graduated! Being in the class of 2020 means my physical graduation sadly wont take place for a few months but the diploma is in my (virtual) hands and I am officially free of organised education forever!!!!!
Now why am I making a huge deal out of it?
Studying with CFS
First of all anyone making it though uni- regardless of their grade- deserves a parade because we’ve all worked damn hard and deserve to celebrate.
However, for me personally, graduating has a much deeper meaning. This past year, my chronic fatigue syndrome had me thinking that maybe I wouldn’t be able to make it. Often I would have to miss lectures in the morning due to being left bed bound by it.
Focusing on lectures, essays, coursework and exams took a mental toll on my far more than it would for the average student. Often I could only work a couple of hours a day before my brain was so exhausted I couldn’t comprehend words on the page.
To be frank, being a student with CFS/ME was sh*t.
It wasn’t just lectures I was missing either. I barely went out drinking when my friends did because I either didn’t feel up to it, or I had things to do the next day and couldn’t afford to spend the day in recovery (not a hangover lol). Especially in Newcastle, there is a drinking culture so that ended up being a lot of nights out/parties missed.
There were times that I had a bad dip in front of people which, at the time, seemed really embarrassing. Lucking the majority of people around me were really nice and helpful and often helped me to the taxi that I had to get because I didn’t have the ability to walk home.
I remember at the start of my second year, when I first started to feel ill. I would miss lectures and see multiple different doctors and nurses to try and figure out what was wrong with me (who never took me seriously and just said well its another virus…)
Two and a half years later, I have my diagnosis and am starting to learn how to manage my life, but back then never even considered what my life now would be like.
Ok so I know it sounds all doom and gloom so far… but now here’s where it gets good.
I pushed through all of that.
Every. Single. Bit.
Every dip; every missed lecture; every missed party and nights out; every time I cried in my bedroom about what my illness was doing to me- all of it never stopped me. I did it. I graduated.
Life wasn’t always so bad
Don’t get me wrong, a lot of the time sucked but overall, I had an incredible time at uni and will miss it like hell.
I am really lucky to have had such important friends and staff who helped me along the way.
Without these guys, I think the past year would have been much harder.
So a huge huge HUGE shoutout to my friends who have been there for me. The ones who have helped me when I’ve been down and lifted me up throughout uni. I love you guys.
The thing that probably got me through uni the most was my society. I was a proud member of NUGSS (Newcastle University Gilbert and Sullivan Society).
Every year NUGSS puts on two shows: one by G&S and the other is anything goes (well… as long as copyright allows it). Being a performer (Fun fact for those who don’t know me: I did a music degree! I am a vocalist who has trained in Jazz, Theatre and Opera), having a space to be creative and to sing was hugely important for my mental health. Having that fun, creative space was at times, a break from stress and a place where I could just have fun!
I often had dips here though. With dancing (is what we did classed as dancing? 😉 NUGSS members comment below) and projecting a singing voice with no mics, it took a lot out of me at times but everyone in NUGSS was incredible supportive and never treated me differently because of it. It could have been easy for the directors/ musical directors to say that they didn’t know if I could handle a role due to my condition but nope– I was treated the same as every other member and that meant a lot to me.
I had some great times socially too. NUGSS had awesome socials and weekly trips to the pub. I went to places like board game cafes and coffee shops, spending time with friends that I knew I could manage and yes, sometimes I did go out drinking.
Being a student with a chronic illness is possible. It is a struggle, but that struggle makes us stronger.
A couple of tips to get you through
Here are a couple of things you can do to make studying with a chronic illness a little bit easier.
1. Find a lecturer/ member of staff that you trust and let them know your situation.
Luckily for me, Music was a relatively small degree so I ended up getting to know quite a few of my lecturers who were all incredibly supportive. For a larger degree cohort, this might be more of a challenge, but the effort will be worth it.
These staff members can be a huge help in supporting you when it comes to trying to organise help from the uni.
2. Get Special Dispensation from the Uni
At Newcastle, this was called a Student Support Plan. After providing medical evidence, the uni gave me an SSP which meant that I was much more likely to have my extensions approved and I did not receive any consequences for missing lectures. I got all my extensions this past year and boy did I need them.
Having this SSP was essential.
3. Find a Supportive group of friends
This one is easier said than done but finding people who can trust and who will be a part of your support network is super important. They are the people you can turn to at your lowest moments, for things that you can’t really talk about with members of staff.
One way to make this a little easier on yourself is to join a society where you will meet people with similar interests- which is always helpful in starting off friendships.
4. Finally: Don’t be too hard on yourself
It can be so frustrating when you know you have the ability but your body won’t allow you to do things.
This is something I am still struggling with. For my degree classification I got a 2:1 which I am thrilled with but the only thing that is annoying is that I was one mark off a 1st.
That sent me onto a bad thought process. Could I have got a 1st if I didn’t have my CFS holding me back? To be so close to a better grade and the reason potentially being an illness I have no/little control over being the reason I didn’t get there is frustrating as hell.
But then I stopped to think.
Why am I letting myself be upset by this?
69 is a brilliant grade. A 2:1 is amazing! I got to that grade whilst still being held back.
To know that I was able to do well no matter the obstacles is such a positive feeling. So right now, whilst that 1 little mark is annoying, so what? I smashed it!!!!
Give yourself a break if you can’t do as much work as your peers. Don’t beat yourself up for saying no to going to a bar. You are allowed to put your health first. It is the most important thing.
“I am ready to face any challenge that might be foolish enough to face me.” — The Office
It’s time to go out into the real world. Working with CFS is already hard but knowing that I could make it to graduation means I have the confidence in myself to step out into the world with a smile on my face, ready to take on anything!
So, ConGRADulations to me! Let’s see what the future has in store.
Travelling with a chronic illness, or anything that provides a limitation on your life can seem like a daunting task but there are steps that you can take to make it way easier! Here are 5 tips that I find really useful when planning my trips.
1. Stay somewhere with a Kitchen
Diet is important when it comes to keeping up energy levels and whilst you don’t have to be healthy all the time- you are on holiday after all– it can be helpful to know what is going into your meals.
When I go away, I still do go out for meals sometimes but having access to a kitchen has really helped me to plan my food around my activities.
Got a big afternoon? Make a dish with some brown carbs and veg for energy.
Light day? Make a salad that won’t cost an arm and a leg etc
It also helps to save money too as eating out for every meal can be expensive!
2. Make sure you have ways to get back to your accommodation
For someone like me who has chronic fatigue, a dip can happen anytime, and anywhere. Eating well can help to control this slightly but it doesn’t mean that this won’t happen unfortunately :(.
Making sure that you have a way back to your accommodation should you need it is essential.
If you are travelling with a car that is ideal (but make sure you’re in the right state to drive ofc!) or if you’re with someone else, make sure they are insured on the car too. Max (my boyfriend) has been driving me everywhere whilst we’ve been down in Cornwall (mainly because I still can’t drive…) and it has been really helpful to have someone help me get back when I feel bad.
Should you not have access to a car, make sure that you look up public transport links and know your route home.
Also, get the number for a taxi firm incase it is hard to get one off the street. If you are staying somewhere that is does not speak your native language, try and memorise: ‘Do you speak x’ and ‘Can you take me to x’. If you don’t think you’ll be able to remember it, write it down.
3. Make a To-Do List
I don’t know about you but I feel way calmer having planned out what I intend to do for a trip. Making plans of what to do and see really calms any anxiety of floundering around aimlessly.
To make an overall trip list I look on pintrest or other people’s travel blogs to see what previous visitors recommend. Local tourism sights are always a good bet and I even look on Instagram to see where the coolest looking spots are!
Then, it helps to make daily breakdowns. Planning what you want to do each day is great for people with illnesses because we can say: ‘Wednesday looks like a heavy day so let’s make Tuesday an easy one and plan for an early night’ etc
4. Don’t beat yourself up if things don’t go to plan
After spending ages creating your perfect itinerary (or at least I do) it can be so frustrating when your illness decides not cooperate.
During my trip to Cornwall, I think I only did about 70% of what I had planned to do because I had dips. It sucks but no matter how hard you plan, shit happens. The best thing to do is try to enjoy the things you’ve managed to do andbe flexible with changing up what you want to do based on how you’re feeling.
5. Take energy boosting snacks withyou wherever you go
If you start to flag, have a dip of or just start to feel all round rubbish, having some energy boosting snacks to hand can help give you that small boost of energy you need to get back home or to get you over the hill so that you can continue on with your day.
Personally, I take a super small Tupperware of trail mix with me everywhere I go. It has a mixture of nuts and seeds that are not only a yummy, healthy snack, but are also great for a little boost.
Let’s say you’re feeling rubbish but it would take you a while to get back to your accommodation or to get a proper meal- having something like a peanut bar, some seeds or (if you fancy something more fun) a cacao bar can be a huge help.
Don’t think you can’t do it- you can!
Our bodies might be fighting against us at times but it is 100% possible to get out there and do the things we love. We just need to take a few extra precautions than healthy people.
So to all my fellow Spoonies out there, let’s get exploring!
For the last 3 years I have been living with Chronic Fatigue Syndrome (CFS). Newsflash- it sucks. Imagine you have an energy scale with 1 being a regular person after a good night’s sleep and 10 is being about to pass out: the most energetic I ever feel is a 4 and that’s on a very good day (and also often not for long periods of time.)
With an illness like this, you know any commitment you make is 70% truthful at best. You have no idea if that time you have agreed to meet your partner for coffee, or if the day of your best friend’s birthday party is the moment your body decides to go nah not about that life and hits you with a dip.
I like to think I’m relatively a relatively positive person! I try to keep my head up and push on. I made it through university, keeping my grades up. I’ve been putting myself out there, and have been hired to work remotely on social media jobs. So you know what, I’m not doing too bad! But I live my life with a leaky battery, never feeling free to go about and enjoy life to fullest like my friends around me.
And so 3 weeks ago I decided enough was enough.
I started doing a few workouts at home, mainly beginners yoga so nothing too strenuous.
I’m super lucky because we have a family friend who is a god-tier PT and is used to helping people with illnesses like me. I rang her up and we started doing some (socially distant) sessions. Together we went through my diet, which was appalling I’m not going to lie, and decided that it was time to switch to a much more healthy lifestyle.
I love cooking so thankfully it hasn’t been too hard to incorporate some new healthy meals into my diet. I am eating; way more vegetables; less meat; brown/wholewheat carbs over white ones; less artificial sweeteners/chemicals and better, healthier snacks.
I got myself a Deliciously Ella book on her recommendation and got at it! The best bits are the baking. Over lockdown, baking has been bringing me so much joy, so when my PT and I decided on a diet change, I was so sad I couldn’t bake anymore- until I learned that I could!
I’ve been making healthy recipes such as vegan/gluten free oat cookies, sweet potato brownies and beetroot chocolate cake and get the same happiness from going the healthy route than I was before.
Keeping a food and symptom diary has been really helpful to see if there is a correlation between what I’m eating and how bad my CFS gets.
As well as eating well, I’ve also been exercising. I know, gross right? I’m joking now but to be honest I wasn’t a keen exerciser before and with my chronic fatigue, a lot of exercise would just make me feel awful.
Things like yoga and pilates are brilliant for people with conditions like me because they help you to focus on your body and breath without tiring you out too much (although some cardio is still essential). You still get a great workout and it’s actually really fun.
There have been results!
Since I started my new lifestyle, I have found that overall I do have more energy than beforehand. I still have dips- some of which are really bad- but my base energy level is higher than it was before.
Not just that but I’ve lost 3lbs/ 1.4Kilos, an inch and a half off my waist and an inch off both my chest and hips which I’m super happy with!
Thank you for reading my first blog post on my new website, it means a lot that you want to read my story. I hope that I can help others with the things that I learn/share.