I haven’t written for a while as I’ve been pretty busy! But also struggling with fatigue! Well what with limited energy, PIP tribunals, PA interviews & diagnosis drama, I’m not too surprised. I sometimes underestimate how much I actually have on my plate right now!
I thought I’d do a quick little update on my life as constantly explaining myself can be super draining!
I’m just so confused! It’s such a long process!
There isn’t really too much to say here other than the fact my doctors think there’s more going on than they initially spotted!
I may have been misdiagnosed & my consultants are pretty worried about some of my symptoms being related to alternative diagnosis’!
SO BASICALLY NO ONES GOT A BLOOMIN’ CLUE WHAT’S GOING ON BUT SOMETHINGS NOT RIGHT!
I’ve been referred to all the top dogs to see specialists for what feels like everything in the world! Today, my consultant told me I have ‘an extensive, impressive repertoire of illnesses’. Whoop tee do, I’m so proud?! Fingers Crossed this list shortens with time.
I’ve moved house in Brighton & I love it. I’m living with a mixture of 3 boys and 3 girls. I love them. It’s really good for me to be able to socialise at home in a big house, as on days I feel too unwell or unable to get out, I don’t become socially isolated!
In my Consultants words- I’m ‘not allowed’ to go back to studying at Uni this year which sucks but I also totally understand. Ofcourse the decision is in my hands but I don’t want to go against medical advice and make myself more poorly.
He said something the along the lines of- ‘you’re too poorly, don’t go back are you crazy?’ He was basically saying if I tried to go back to uni whilst still being poorly it’s unlikely I’d manage and I’d therefore be more discouraged & less likely to continue on in the future, if I am well enough to do so years down the line.
It is such a pain in the bum that I can’t live the life of a normal 20 year old but I won’t feel sorry for myself & I’m definitely making the most of it: having a few cocktails, then going home on my mobility scooter is always fun anyway!
I didn’t realise how much I was struggling before they started! THEY ARE BOTH SO LOVELY! I have two fabulous new PA’s (I feel too fancy saying that, but I guess it makes me feel better about being a 20 year old who requires carers!) They are genuinely improving my life so much & taking so many small stresses off my shoulders. I’m going to be doing some more in-depth bits and pieces on what my carers do, how I employ them etc etc soon!!!
Oh gosh. I’m at tribunal stage currently. I’ve been awarded some of PIP. My mum has been my absolute rock sorting this for me! I’ll talk more on this when I have the spoons. Three points to take away: It’s a joke like SERIOUSLY, I’m too exhausted to do it alone, It’s a joke x2! X
I’m having Tic Therapy at the moment which is exposure response therapy for my tics and it seems to be going really well right now! Patricia (my tics) seem to be a lot calmer although I still have tic attacks and feel pretty exhausted but it’s still early days and they do feel more controlled! I’ll keep everyone updated here.
I’ve got tonnnnnesssss of blog posts planned both here and with Access Your Life as well as some Instagram features & Little Poorly Brighton stuff. I’m also super excited to do more with my new position as a Global Brand Leader for Invisi Youth! Funnily to do all these amazing things as a disabled person who functions on a minimum of 14 hours sleep a day, it can be quite challenging! Give me time and hopefully I’ll have brain dumped properly and I’ll be a little more with it!
Sorry for the ramble & I hope it didn’t come across too boring! I just wanted to do a little update!
Take care of yourself and tell someone you love them today!
Since becoming unwell I’ve realised I have to make decisions about how I spend my time, if I want to go to a party in the evening I need to spend all day in bed resting & eating well. If I wake up in the night in pain, I need to cancel a morning appointment so I can make the afternoon one.
Now, I am going to talk about spoons… no we aren’t going to eat with them, please bear with me!
My Grandpa introduced me to ‘the spoon theory’ a few years back, he loves to research & is fab at supporting me with my condition. I received an email from him which read, something along the lines of , ‘ use the spoon theory to structure your days’ Attached was a link…
Now when I received this email, I thought he’d gone a little mad! The older generation of my family are often sending me links to obscure videos and spam websites in my emails, usually that I’d be worried to click on as it’s likely they’ve forwarded it on from their other elderly friends *face palm* & I’m usually worried I’m going to be hacked and a victim of fraud when I receive emails like this… The elderly aren’t particularly tech savvy! My symptoms weren’t great that day and I clicked on the link in his email- here I learnt about ‘The spoon theory!’ At the time it was very new to me, but now it’s great & I see it everywhere- perhaps my Grandpa was ahead of ‘the youngsters’ for once hey!
The spoon theory is a great system to live your life by.
Why is it called the spoon theory, that’s a bit random!?
The spoon theory was originally created by Christine Miserandino in 2003 as she struggled to explain how life with an autoimmune condition makes her feel on a daily basis. She was sat at dinner with a friend who asked how she was and used spoons from the tables near by to explain her energy levels, she then decided this worked great & wrote about it. Within the theory she describes a persons units of energy to be represented by a spoon- hence ‘The Spoon Theory.’
The average person would be entitled to 12 spoons a day. The amount of spoons used per activity in their day depends on the person, their health & previous commitments. If you are an able bodied person you should theoretically have roughly the same amount of energy each day.
For people with chronic illness or a condition that causes chronic fatigue, some activities may take more ‘spoons’ than it would for an able bodied person. Healthy people tend to have ‘stronger’ spoons or are more consistent in having 12 spoons a day to live with, whereas chronically ill people may have as little as half the amount of spoons!
If you use up all your energy in the morning you will have none left for the afternoon/ evening. Spoons are therefore a great visual representation to let you know when you are becoming low on energy & that it’s time to take a break. An hour nap could perhaps re-charge one spoon. If you power through you’ll end up using extra spoons and have to borrow spoons, which will leave you with less for tomorrow.
In the ideal ‘super duper organised’ persons’ life, you might have a book in which you track your spoons (drawing them visually and dedicating your daily tasks to each). In real life- This is less likely, I’d rather an extra half hour in bed then have to waste excess energy writing my daily spoons out! (Although I’m sure this could be quite therapeutic for someone who likes to live according to a timetable and structure). I tend to have a mental approach to my spoons. I can feel certain symptoms coming on & I know that I need to calm down- (it’s rare I do take a step back- I tend to live my life at 110% or 10% – I am yet to master the art of pacing!) That being said I know in my head according to my spoon count, what I should be doing throughout the day.
This is a waffley one sorry! But I do hope it makes sense:)
How do I count my spoons?
Some activities cost more spoons than others.
For a person with a chronic illness they need to make carefully thought out decisions about which activities they can participate in, if they don’t do this, it is likely they will experience a flare up (exacerbation of symptoms the following day.) For someone with ME/CFS (Myalgic Encephalitis) the exhaustion caused by ‘using too many spoons’ is reference to as ‘Post Extertional Malaise’. If you do not pace yourself (and count your spoons), your body has a meltdown and there is a knock on effect from over doing it.
I am a person who wants to do lots of things, trapped in the body of someone who is sick & needs to sleep a lot.
I love this! It’s very accurate.
For many chronically ill people, our illnesses stop us from doing all the things we want to do.
Understanding others’ spoons:
We all have that flaky friend!!!Chronically ill people really really don’t want to be ‘that’ person- they don’t want to appear inconsistent or unreliable, a flake but their energy levels and symptoms can fluctuate. Making people aware of the spoon theory makes it easier not to have to explain yourself. A healthy person rarely needs to plan how to use their spoons, (although it is a great idea for them to be aware of their spoons), they don’t have to decide between a shower and a doctors appointment or a party and going shopping. They’ll likely be tired after a busy day but not fatigued from small activities.
Myalgic Encephalitis or Chronic Fatigue Syndrome has different severities, a person with more severe chronic fatigue syndrome may struggle to shower, get dressed, cook. Each activity an able bodied person may take for granted can be a huge challenge. Many people with other health conditions experience intense chronic fatigue too. Some people who follow the spoon theory refer to themselves as ‘spoonies’ or ‘warriors’ so you may have seen it referred to in that sense. For me this is a bit cringe and I prefer using it mentally, but if it helps you, go for it!
How do I manage my spoons?
For me – changing my bed sheets wipes me out- I know if I’ve got to change my bedsheets, there is absolutely no way I can go out the house too. If I have no choice but to change my bedsheets, I’ll cancel plans for later in the day or invite people to my house where possible. I feel a lot more comfortable in my house as most my friends know of my condition and we can have a nap together or do something low energy, I’ll lay in bed whilst five or six other people chat in my room- it’s a good way to still feel able to be included in plans but not waste spoons getting buses, walking, makeup, getting dressed, going to public places etcetc! On the other hand I may ask for help to change my bed sheets to save spoons, if I can get my carer to change my bed sheets or pay a friend to do so, then it’s likely I’ll make it to dinner or stay awake through that film… maybe if we’re lucky!
Similarly- washing my hair is a Bloomin’ faff! I hate it. No you do not love my hair, no you do not want curly hair ! Hahaha… If I wash it I usually need someone else to brush it or i’ll need a nap after, brushing my hair alone can take me up to an hour. Some days, the act of doing one activity steals spoons from other activities. On a hair wash day it’s unlikely you’ll catch me doing much else unless you can help me with washing and brushing my hair before.
Now if each of these day you say activities only took one spoon, that’s 16 SPOONS GONE. You’ve already borrowed 3 from tomorrow!! What are you going to do as each task takes up to 4 spoons!!! That’s too much maths for me, but you get the stress.
1. wake up 2. brush your teeth (1 spoon- sometimes I get back into bed to do this;) ) 3. Shower or Bath (lots of my spoons get taken here! A lay down on my bed after usually helps me recharge) 4. get dressed 5. eat breakfast 6. go to the doctors (for me this could take 4 or 5 spoons) 7. come home (driving makes me sleepy and the bus so I’d definitely give this a couple more spoons) 8. make and eat dinner (most the time cooking makes me so exhausted that I end up sleeping whilst my dinners still in the oven!) 9. change into your pyjamas (let’s be real, I usually fall asleep in my clothes!)
You get the picture, these are just essential day to day tasks, we have nine activities and right away a lot more than 12 spoons have been used. Some of these tasks like brushing your teeth may only use up one spoon, while going to the doctors has a number of stages and could use up six spoons. This only leaves you with five spoons for everything else… and there’s no way you can make five spoons stretch without exhaustion. So what are your options? You can opt to ‘borrow’ spoons from the next day’s allowance but that means you start the next day short, you can’t be short on spoons everyday because you’ll run out, imagine trying to do your essential tasks with even less spoons. It’s easy to get trapped in a cycle of overdoing it and exhausting yourself due to not managing your energy levels. Therefore if you use 20 spoons in a day you’ll need to make up for those extra spoons with rest the next day.
Sure, able bodied people might have the odd day where they don’t feel like cooking or cleaning, they may have hurt their back or over done it. This is temporary. Having energy and good health should be classed as a luxury, share your spoons, if you know you’ll be okay with one less spoon- offer to carry someone’s bag, grab bits from the shops, help with cleaning, cook their dinner. An activity which takes one spoon for you may take three for someone who is struggling.
Right… I’m going to stop rambling on about spoons, because seriously, there’s only so much you can say- they’re a metal utensil used for soups and yoghurt! Maybe we are all going mad!
Hey! I’ve been having a poorly phase forgive me- I’m on the way back up. Whilst I’ve been feeling sucky; sicky, sore, sleepy- I had a think about what I could write a blog post on to help you feel more normal on these kind of days if you’ve got to see humans.
The thing is… If you saw how I looked when I’m having a bad day you’d probably run a mile. I’m giving these suggestions but I rarely take my own advice. Maybe I’ll start. This post is written with intention to make yourself feel brighter even if your only plan for the day is to go back to bed. I tend to tint my eyebrows and do gel nails before I get to the point I’m too sick, this is always a good shout as it makes me feel slightly less gross when I am super sick. If you can cope with the pain of waxing (I absolutely cannot!!!- maybe get waxed regularly too to save you becoming a chronically ill hairy gorilla) – again if that’s what you’re into you do you!
– BRUSH YOUR HAIR I REPEAT BRUSH YOUR HAIR!!!!!!!!!!! Or ask someone else to do it for you. When I lived at home my mum used to brush my hair for me atleast once a week, I’d sit on the floor in between her feet like I did when I was a child & shed spend around an hour brushing out the matted fluff ball that was my hair. Now I occasion bribe a uni friend to do it for me. This is especially those of you with conditions causing you to sleep a lot or struggle with self care. I have ME n depressive Disorder. When I tell you my hair gets matted. It’s bad. I’ve had 4 hairdressers brush my hair for 45 minutes between them all. If you don’t do any of these cause you aren’t too bothered (honestly I can’t be with most of them.) Please just run a brush through your hair as often as possible. Curly hair girls in particular. (I might do a little crazy curly frizzy dry hair help post soon- but for now don’t brush it dry if you’re planning to leave the house – if it’s curly it’ll go mad) I sleep ALOT imagine bed head right… now times it by a 10, 15, 18, 26 hour nap right… now add curly hair… you see. Brush your hair when you can or get some help to.
– DRY SHAMPOO & lots of it! In every bag/ drawer. My hair gets greasy in like 0.3 seconds so if you’re anything like me you could invest in a good dry shampoo to make you feel a little fresher. Greasy hair is never a good look.
– DEODORANT WITH AN EASY SPRAY THINGY AND TONNES OF IT. Have loads of spare deodrants incase you have flare ups where you can’t get out of bed for a while. I get super super hot sweaty flushes so deodrant always helps. Some can be hard to open if your hands don’t work too good so bare that in mind. (Lol everyone uses deodrant I don’t know why I’m giving deodrant advice- I’m a sweaty person.)
– WATERPROOF MASCARA, crying in pain, crying cause you’re sad, sleeping and smudging tonnes of gunk everywhere. Making yourself look a little more alive & less like a potato. Personally I don’t really use water proof mascara, but for the times I’ve woken up after a fat nap or calmed down after a big tic attack, sometimes it’d be nicer if I didn’t have black mascara all down my face.
– BLUSHER HIGHLIGHT BRONZER COMBO, let’s face it without these products you’re gunna be looking and feeling pretty grey. Slightly ‘Zombified’ Blush, Bronze, Highlight . They’re super easy to apply with a light brush or fingers when you’re feeling too poorly for a full face but in need of a pick me up. The more colour & shimmer the more awake you look;) Obviously wearing makeup when you’re sick and in bed all day is not a necessity but on those days you’ve got no choice but to go to a special event or face the real world & you cannot get away with being naked, Afro hair out,stained oversized T-shirt’s. This could help.
– LEAVE YOUR MAKEUP REMOVER NEXT TO YOUR BED: This isn’t just for removing makeup, although it’s a good idea to keep it next to your bed as I know I should remove my makeup but I rarely do. The walk to my drawers (about 1 metre from my bed LOL) isn’t worth it. Sometimes it’s nice just to wipe your face with a cotton pad and some makeup remover for a little refresh.
-CHAIR WITH FEET UP, To get you out of bed but still comfy, try to invest in a chair with feet, reclining, a foot stall, fairly comfy or frankly anything that lies more flat with a supportive back. ( explore facebook marketplace for those with less money —- I’m addicted—- ) I do beauty therapy treatments so luckily I have a super comfy massage couch which works great as I can lower it to get onto it if I’m feeling wobbly. Perhaps a chaise lounge or arm chair could be an idea for you.
– WET WIPES: let’s face it, showering isn’t always an option when you’re chronically ill! I used to shower 2,3 times a day, now… ew. Remember to preserve your spoons & if it means showering isn’t an option then wet wipes and soap it shall be! Gross but better than stinky and makes you feel a little better if you’ve spent days in bed.
– SCRUNCHIES& HEADBAND: literally make your hoodie and joggers outfit go from a 2 to a 7. Makes any greasy hairstyle look like you’ve actually tried a little and detracts from the fact you haven’t washed your hair all week and you’ve got sick, crumbs of food and fluff from your blankets in it. Oh also!! Curly hair girls scrunchies are so much easier to get out than those cheap hairbands where elastic rips your hair into a gazillion pieces or simply goes missing in your mop!
– MIRROR: Keep a mirror above or next to your bed. Save energy (sometimes sitting up to get ready and feeling like you’re going to faint Isnt really worth putting makeup on)
Rest up x
The happiest people are the prettiest- always.
I’ve been in a few support groups and stuff before and frankly I find them pretty depressing – personally, the majority of the time I like to try and stay positive whilst being chronically ill as my mood is so easily flipped to negative. So, I’ll tell you a little about myself and why I decided to write a blog.
I’m in my second year studying English Language and Linguistics at Uni of Brighton. I am also a part time beauty therapist (recently I have been working hard to complete courses to be able to fund being a disabled student woo hoo). My conditions do cause brain fog and fatigue so do forgive me if some things simply do not make sense to you!
At 14 I was diagnosed with Panic disorder and Depressive disorder which was a bit crappy; I didn’t really go out of the house much for two years – unless I had no choice. Many people struggled to understand, but through the support of my family, medication & multiple medical professionals, after a long haul battle I’d like to say I’m 90% over the panic stage of my life (touch wood).
My fairly new challenges in life have been ME/CFS (Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome) a diagnosis in 2017, Fibromyalgia with Hyper-mobility syndrome & a recent diagnosis of Tourette’s syndrome!!! (No, I don’t shout swear words out constantly, don’t worry). On top of this I have multiple hormone imbalances, such as vitamin levels and thyroid levels.
I have a blue badge which has improved my quality of life dramatically! I am so grateful for it. But I am still feeling slightly isolated. I have plenty of friends who are amazing but our energy levels simply don’t match up. It’s hard for people to understand why I sleep 26 hours a day or why I slur my words when I’m tired or appear in slow motion – as a 19 year old most my friends are out clubbing till 6am. I’m sure if you’ve ever experienced an invisible chronic health condition you are used to the ‘oh really, you can’t do that?’ and the ‘you really don’t look disabled’ comments that come along with the disability.
So basically, cut a long story short, I’d love to start being proactive in a positive way, to meet people with similar conditions to my own & share our experiences. My doctor alone has met 1 person with tourettes in 29 years of practicing medicine, and as for ME/CFS, I feel they are very misunderstood conditions. (No, not everyone is tired in the same way I am), (No, exercising excessively won’t help, as it is not down to laziness!) I’m hoping that with a little insight into my life, it could help improve others’ and my own mental and physical health!
It’s okay to feel shitty sometimes: I spent yesterday crying – as going back to uni with tourettes, anxiety and fatigue is my idea of hell. For me, my own negativity tends to bring me down so…
As I’m writing this, I am trying my best to surround myself with goodness & maintain my positivity. Feel free to follow my journey of tics and tips 🙂