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 my health deteriorated I can’t help but feel like I was massively thrown in at the deep end. Doctors offer little life advice and mainly medical advice- we don’t get told how to cope, manage and access services. Speaking to many many chronically ill people through the creation of this blog, I have discovered so many, like me, are unaware of our rights as disabled people.
Now I hope I don’t need to say this, but I’m going to mention it anyway. Disabled people ‘perks’ are not perks- they are there to make life more accessible for disabled people and to bring us up to an even-playing field. Please do not take advantage of any of the below and only apply for what you need.
Some of the following suggestions need a more in-depth explanation in individual posts- for example PIP, benefits, PA and care support. I will cover these more in the future. Talking about the more ‘official disabled stuff ‘ can take up a lot of spoons!
I’ve learnt a lot about the world since being sick. Disabled life is expensive. It takes double the amount of time to do everything. The general public can be weirdos. Talking about your access needs or educating others isn’t being selfish.
Let’s start by stating this: It is against the law to discriminate against someone because of their disability.
Disability Rights UK is a great place to go for any legal queries or advice regarding work or access.
Disability Equality Act 2010: ‘You are considered disabled under the Equality Act 2010 if you have a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities.’
Disability Equality Act 2010.
Disabled people are allowed to work, study and access the community. We are allowed to live a fulfilling life and reasonable adjustments should be made to ensure we are able to do so. Ofcourse our health conditions can often limit our choices but reasonable adjustments should be put in place to aid our abilities.
Reasonable adjustments: “Reasonable adjustments are changes to the work environment, employers, shops, local authorities and schools that allow people with disability to work safely and productively. Under the Equal Opportunity Act 2010, ‘disability’ includes: physical, psychological or neurological disease or disorder. illness, whether temporary or permanent.”
Scope has some amazing resources for more depth into this on their website. Also note that options available to you alter from county to county and town to town- annoying right?!
They like to make things a faff! Remember that, however once support is in place it will be life changing.
Discounts:The cost of being disabled is high! People often feel we are ‘lucky’ for being entitled to discounts. I mean. No comment.
Brighton has a great scheme run by the charity ‘amaze’ they offer ‘compass cards’ which entitle disabled young people and their friends, family and carers discounts and freebies on local attractions, leisure centres and cafes. Google to see if your town has something similar! I do think a lot of funding for things like this has to do with external factors such as age, income etc…
Music Festivals free carer tickets: Accessing ‘normality’ can seem like it’s a whole world away. Attending social events is never easy and music festivals are up there with one of the hardest, that being said… There is an absolutely fabulous charity called ‘attitude is everything’they team up with all big music festivals across the UK such as community festival and reading festival to ensure music is accessible to disabled people. Their support is amazing on the day as well as answering any concerns leading up to the event. They offer support such as accessible toilets, viewing platforms, camping facilities with electricity for over night events, first aid, free carer ticket with proof of disability (whether they are a formal carer or not). Just find the accessibility tab on the festivals website to fill out online forms or call/ email them directly. In my experience each festival have been great.
Many other music gig/ concert booking services also offer a similar services including carer tickets. The link below is an example, but always contact the ticket provider. Viewing platforms, quiet rooms, queue jump, seated not standing are all examples of support available at music gigs no matter how big or small.
Cinema card: The CEA card entitles you to a free care ticket if you would be unable to attend without the support of a PA. As well as this, individual cinemas will have set schemes in place to support any access requirements you have.
Accessible theatres: Everything from disabled friendly viewings for autism or dementia and toilets, PA/carer tickets all to seating and transport.
English Heritage offer some free support for disabled people and their carers accessing any of their sites.
Getting out and about as a disabled person can be a huge challenge and whether you have a learning disability or find yourself wheelchair bound all needs are valid. Social isolation is a huge thing for disabled people and sometimes the thought of ‘faffing about’ trying to arrange a day out is not worth your energy. So many larger organisations are beginning to realise this and there is more support in place to aid your access needs. Not everything always runs smoothly, but knowing your own needs or having a carer/ friend know your needs can help.
Remember the judgement you receive from others is their problem and not yours. Until someone has spent a day in your shoes, they cannot comment.
Care teams: Care coordinators are few and far beyond. Speak to your GP about whether or not there is a possibility to have a medical practitioner or team look at your care holistically. I am not the best person to get advice on this as I don’t have this in place!
Appointments: I’ll be posting a ‘navigating hospital appointments’ post soon as there are lots and lots of pointers surrounding this.
PALS– Patient liaison service at your local hospital or their main switchboard are always a good place to start with queries and complaints.
Ergonomic Equipment: If you are working or studying, you could be eligible for a free Occupational Health needs assessment to enable you to stay in work or education with more support to nurture your disability, from this you may be able to get a chair, desk, computer equipment, assistant, software etc.. to aid your disability in the work place and ensure reasonable adjustments are met to help you meet your potential. OH cover everything from undiagnosed back pain to brain injuries, cancer to autoimmune conditions.
Disability Equipment: Below are links of sites which have a multitude of daily living aids to support your independent living. There are aids for almost everything you could possibly think of, which help you and your carers at home. You do have to pay for these aids, but you may be VAT exempt due to your disability- your PIP money can be used to purchase items. (I’ll discuss PIP more soon)
Amazon also have lots of options- if you message the seller, you may be exempt from paying VAT. Ofcourse not only for help with aftercare, but it is also always better to buy directly from the disability company ethically.
Carers allowance: The UK government funds people on low income who are ‘unofficial carers’ this can be a friend or family member who does or doesn’t live with you but offers care support for at least 35 hours a week.”You could get £67.25 a week if you care for someone at least 35 hours a week depending on their benefits and whether you earn under £128 a week.”
Adult Social Care: I had a few referrals here and am going through the PA/ Direct Payment process- I will do a separate post on this soon but for now, the resources below may be useful.
DSA: Disabled students allowance. If you are a student you can apply for DSA. This is not physical money. They offer you a needs assessment and then discuss software, paid mentor support, equipment etc which could help you in your studies. The idea is to ensure disabled students are not disadvantaged and on an even playing field with their peers. You apply for this through student finance. I’ll discuss this further in another post.
PIP: A specific pot of money given to disabled people based on the impact of their health on their daily life and not a diagnosis alone.
I will be creating a ‘PIP for dummies’ guide very soon’ Personal independence payment is a big stressful faff and the system is not made in favour of the disabled people applying for it! I understand PIP can be particularly overwhelming for those who are sick. My tips for now. Get an advocate or friend/ family members support. Contact a local charity for help. Appeal. Don’t panic, hang on in there and get an advocate or carer to help… more on this soon.
Benefits: If your disability affects you so severely that you are unable to work, you can claim benefits. There seems to be a lot of stigma about people claiming benefits and people abusing the system. Know you are entitled to access support without judgement. Only you know what you are like on your worst day! I will explain these in more depth in future, but for now- citizens advice bureau and the below links should help a little. Sadly for some benefits really aren’t enough to live off so external support can be needed too.
Transport: Travelling on public transport is really hard as a disabled person- this becomes even harder when travelling alone and having to deal with the general public! Allow yourself extra time and be mindful that not everything always runs smoothly.
Below is hopefully every link you could ever need for transport!
Disabled persons bus pass: You could be entitled to free bus travel everywhere in the UK. Google ‘Free disabled bus travel’ or ‘disabled bus card’ then your town and it will come up with a link to your city/ council town hall- you can usually print the application online and post it or go into your town hall and there is a department to do it there. *top tip- if you go into the town hall they will take a photo of you for your ID- you might want to know this before you go!
AIRPORT SPECIAL ASSISTANCE: Contact the airline and airport you will be travelling with and tell them the dates and times of your flight- ask for special assistance- remember this needs to be done before you travel. I’m going to do a ‘how to be disabled- abroad’ post soon.
Brighton has a scheme called ‘helping hands’ your area may have something similar, have a gander.
Motability scheme: ‘The Motability Scheme enables people to get mobile by exchanging their mobility allowance to lease a new car, Wheelchair Accessible Vehicle ( WAV ), scooter or powered wheelchair.’ (PIP again!)
Toll bridges and congestion charge: You may not have to pay or be eligible for a discount. Disabled people often have to drive to travel long distances for appointments etc.
Below are some examples:
Toll exemptions. You may be exempt from paying toll fees. Many disabled people cannot access public transport easily, and therefore need to drive more, spending more on petrol, parking etc…
Assistance dogs aren’t just for people who are blind, companies such as canine partners can aid you in your independent living by matching you with an assistance dog.
Watersure uk: The WaterSure Scheme can help you if your income is low and you use a lot of water due to your disability. They can also warn you if there are any issues which may leave you with out water. Many gas/ electric companies do the same.
RADAR KEY: A blue key with a heart shaped top. Many disabled people need clean, fast access to toilets. They open the majority of locked toilets in the UK. Open disabled toilets in parks and public places as well as restaurants etc which may support the scheme. These are between £3-4 and available from many care shops, lots of big boots, and online simply type ‘radar key’ into google and there are lots of links. If in Europe, there is a similar scheme called the ‘eurokey’.
BLUE BADGE: If you suffer from mobility issues, struggle to walk more than a short distances, anxieties around long distance walking which could lead to issues for your disability such as bowl incontinence or autism you may be eligible for a blue badge. This enables you to park in blue badge bays and on double yellow lines- subject to the towns rules- please always check the rules of the town you are in, as you are still likely to get a ticket. I will do another post on life with a blue badge. YOU DON’T HAVE TO DRIVE OR OWN A CAR TO GET A BLUE BADGE!
Sunflower scheme: The hidden disability sunflower scheme- started in airports but now implemented in shops, you can pick them up free in some big retail shops and supermarkets at the customer service desk or buy one here. I LOVE THIS SCHEME BUT THERE NEEDS TO BE MORE AWARENESS ON IT!
Not all disabilities are visible: Google ‘Not all disabilities are visible’ there are tonnes of resources and information from car magnets to badges, lanyards and stickers. Etsy is a great place to support small local businesses.
Access leisure card: Many councils have discounts or free leisure facilities for you and your carer. I have linked the Brighton one below as an example. Some schemes allow up to 3 people to attend with the disabled person free of charge.
As much as we are super lucky we don’t live in places such as the US, where we pay thousands in medical fees- if you regularly need lots of medication – prescription prices definitely do add up. £9.15 per item.
Here are a few ways you can save money on prescriptions.
If you are being prescribed something which can be sold over the counter such as a mild excema cream, paracetamol based medications, antihistamine, nurofen, ibroprofen gels etc, it will be cheaper to buy it over the counter than receive it on prescription. It will save both you and the NHS money.
See the link below to see if you are entitled to free prescriptions.
Medical exemption certificate, Maternity exemption, low income exemption, HC2, HC3 form are examples of free prescription entitlement.
Prepayment prescription Certificate: If you are not medically exempt, you are able to pay in ‘bulk’ for as many prescriptions as needed prepaid. £29.65 for 3 months. £105.90 for 12 months.
Apple Products: I’m not sure about Android but apple products have a range of accessible features. Accessibility in Settings can enable larger font etc. One feature I like it assistive touch- I have the little grey button on my screen as my hands hurt trying to stretch for the buttons all the time- you can turn the volume up and screenshot, restart etc all with this button.
Putting your medical information including allergies in the Health section of your phone can be good for 999 callsas it can be accessed if your phone is locked and you are unresponsive.
Writing ICE after emergency contact details.
Accessaloo-finding clean and accessible toilets. If you know me well you’ll know this is always super handy for me in a rush! ‘Navigate, add, save, rate & review accessible toilets’
Wheelmate– finding clean accessible toilets as well as disabled parking- app users can enter details of their finds.
Accessable– Originally called DisabledGo- Access Guides with accessible information for disabled people, carers, wheelchair users. Includes restaurants, airports, hotels, hospitals, toilets and more.
Medical id: These are genius. Your id will come with an individual pin code on the back of the red circle piece. You then log in online and enter all your details of operations, allergies, diagnosis’ etc. They do have cheaper options, gold, other designs etc.. The idea is that you have your medical details on file and if you were to be in an emergency situation where you are unable to communicate or respond medical professionals or the ambulance service will recognise this symbol. It is a universally recognised symbol which commands attention. In my opinion the best place for the id is on your wrist as a bracelet or on your neck as a necklace- this is because this is where our pulse is checked. That being said they do have cards, keychains etc… Make sure to regularly update your ID details on file online. THEY COULD LITERALLY SAVE YOUR LIFE!
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!
For me Tourettes isn’t the problem. Tourettes Syndrome makes the problem a lot more visible to others.
I’ve struggled with ME/CFS- Myalgic Encephalitis or Chronic Fatigue Syndrome for a few years now. It’s an illness full of surprises.
What is ME?
Chronic fatigue syndrome (CFS) is a long-term illness with a wide range of symptoms. The most common symptom is extreme tiredness. (Fatigue) NHS.
Who gets ME?
CFS/ME can affect anyone, including children. It’s more common in women, and tends to develop between your mid-20s and mid-40s.
In simpler terms- imagine you’ve been doing the dreaded bleep test alone or 40,000 steps up hill- you’ve just finished and all you want to do is get into bed… instead you have to do the same thing again- no one can see that you’ve just done all of this, so you have to power through and pretend your fine & ready to do it again. Really? Yes.
Having ME makes you very fatigued. Constant exhaustion is somethingI have to deal with. I look rude for yawning. I look lazy for not being able to join in with others.
I spend much of my life responding to ‘I’m really tired too’ ‘how can you be tired you just slept 26 hours’ or ‘if you sleep during the day you wont sleep at night’ – trust me I will.
I don’t complain. There’s not much point in complaining. My mum and my sister are there to receive all of my frantic I hate life messages in our group chat (love you both) they are the two to listen to my complaints, other than that- I power through.
I recently discovered the spoon theory and now it seems to be following me everywhere! I definitely need to be following it!
The spoon theory discusses the fact that we have 12 spoons a day. The average fit person has one task for each spoon. But for a sick person – daily tasks such as taking a shower often takes 3 spoons for me.
A friend of mine who I met being sick often asks me ‘do you have enough spoons to deal with my emotions as well as yours today?’ I love this. She understands. She knows that dealing with otherpeople’s problems as well as your own can be difficultparticularly when you’re sick so beforebombarding me she is considerate.
Of course I’m always happy to listen to my friends if they are struggling. I’m learning to understand things are all relative and other peoples problems that may seem tiny to me could be a massive deal to others as life is all relative. I’m always interested to hear aboutotherpeoples lives but sometimes the tiredness takes over and I come across as thoughI’mnot listening so perhaps arranging another time to talk is what’s best for us both.
Slurring my words, fainting, answering phone calls mid sleepand having no recollection of it is much more than just tiredness.
I am conscious of losing friendsduetono longer being the one who is up for everything the first one drunk on a night out. I love my friends and I have come to discover who my true friends are – the ones who come over and do my washing for me when I’m sick, who organise my medication & simply just make me a cuppa! From a young age I was exposed to illness- I have/had many family members who have been so incredibly poorly at times that my empathy is definitely there. I’ve cared forfamilymembers and seen them at their worst- it’s in my second nature to want to help people, protect their mental health and make them better so being poorly myself and less able to do these things is hard.
Having had someone in your life who is very sick makes you a different kind of person. I still feel immense guilt when people help me with the smallest tasks, even if they’ve offered and Ihaven’t had to ask.
Fatigue is not tiredness:
Medically speaking, fatigue is not the same thing as tiredness. Tiredness happens to everyone — it is an expected feeling after certain activities or at the end of the day. Usually you know why you are tired and a good night’s sleep solves the problem.
Being so tired I physically poop myself as I cannot make it to the toilet (I can’t believe I’msaying this online!) now that is fatigue. Waking up after 28 hours of being asleep or a 15 hour ‘nap’ and not being able to see as my eyes are so dry- now that is fatigue.
Asking for help:
Carrying things, chopping things, stretching- everydayI have struggles which make me laugh as I’m unable to do what I should be able to as a 19 year old- sadly as people can’t see my illness sometimes I wish I was permanently in a wheelchair so people could see just how sick I am whilst at other times I laugh at just how determined I am to do things by myself. Use it or lose it as my mum says.
I don’t like asking for help but there are definitely things I need to acceptI need help with. Mobility aids. I’ll definitely be doing a post on mobility aids in the near distant future.
Since my diagnosis of Tourettes Syndrome (which is incidentally still being researched as to whether there is something else the doctors are missing) people are starting to show concern- people worry as to why my tics are so prevalent, when in reality, the tics really are the least of my problems hahaha! My pain, fatigue, brain fog- now they are more of a problem. The fact I tic which causes migrainesleading to me being sick for hours- yes that is a problem butthe migraine is simply a symptom of the ME and the tics which cause me to lock my jaw move my arms and flare upfibromyalgia.
The only part of my illness that makes me sad is the fact that I am only 19- people would assumeI‘d be out at raves till 5am when realityI go to bed at 5pm. I’ve learntto accept this is my life for now so there is most definitely no point in being sad. I can still have a drink every now and then, it just results in a huge flare up and around 4 days. If I have a few drinks, although it usually is super fun, it takes about 40 spoons for that weekend and therefore recovery is needed- big time. other 19 year olds would’ve been able to spend all day out and about and then go clubbing, for me I can do 1/2 of one of those tasks at the detriment of myself the next few days. Yes, it is worth it for the memories but unfortunately having fun cannot be a regularoccurrence.
I bit my tounge – it was a tic. It hurt. Layers of makeup still can’t hide the fatigue in my eyes.
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 🙂