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!
As part of a series of posts to raise awareness about chronic illnesses this month, today, I thought I’d talk about ME/CFS, Myalgic Encephalomyelitis or Chronic fatigue syndrome. Thousands of people with this condition and others alike have been isolated for years and awareness week for ME could not have come at a better time. Every cloud has its silver lining: through the grief, pain, loneliness and suffering we are experiencing during these awful times, I can only hold onto the hope that things will be better. COVID-19 has formed strong communities, empathy and understanding. It has identified just how many people are considered ‘at risk’ and ‘extremely vulnerable’ people are helping their neighbours whilst forming new relationships with people who may ordinarily be housebound. I can only hope support continues.
Lockdown is really starting to enable everyone to understand just how isolating life can be when you are not able to take part in normal daily activities many of us take for granted. I have a great social network and would not say I am isolated from society, however I do spend long periods of time on my own, in bed, poorly or unable to do the things my peers can do. People seem to be gutted they can’t go on holiday, to the gym or clubbing. Standard?!? Now shops are shut, theme parks aren’t running and bars are closed, I can’t help but smirk a little. Working from home really wasn’t that hard. Home learning can be done- it is not ideal and took some getting used to, but it has been possible. As the world has found itself forced into a new way of living, I feel an intense buzz in my stomach. I can feel the empathy people will feel when things begin to return to normal and I cannot wait for some of the changes to occur which will benefit the disabled community so much. You now cannot tell me ‘NO’ As I will not take no for an answer. It has been proved in now, during these unprecedented times that anything is possible if we come to together. People will sadly continue to grieve post Covid-19. The ability to work from home could help the healing process. People with disabilities who have always been sick may be understood a little more. Maybe the inaccessible world will become a more accessible place- we can only dream. With social distancing measures taken and virtual tours anything is possible to boost quality of life. I refuse to stop rambling on about this topic until reasonable adjustments are made to support the lives of those considered the minority- the most vulnerable in society and not just the majority.
Okay… Back to telling you the details of ME!
Many people with ME have a comorbid condition (more than one diagnosis, such as a sleep disorder in addition to their CFS)M.E/CFS is a invisible illness which causes long bouts of intense fatigue. Ironically- it has taken me a while to write this post as I’ve been so fatigued and writing posts makes me soso tired! ME is characterised by a range of unexplained neurological symptoms as well as muscle pain with intense physical or mental exhaustion, frequent relapses and fluctuation of symptoms as well as cognitive difficulties. Many symptoms affect many of the bodies systems.
There are around 250,000 people in the UK alone who live with this long-term (chronic) illness to different severities.
Myalgic Encephalomyelitis is categorised into ‘mild, moderate & severe’ by professionals. Weirdly I’ve never been told what type of ME i have but I would guess I fit somewhere between moderate and severe.
People with mild CFS/M.E are mobile and can care for themselves. They can do light domestic tasks with fatigue and difficulty. Most people with mild CFS/ME are working or in full time education, but is likely that to maintain this, they probably have little social commitments. They often take days off due to fatigue or use their spare time coping with the after effects of the rest of the week.
People with moderate CFS/M.E have reduced mobility, they can walk short distances before becoming very fatigued. They are likely to be restricted in all activities of daily living, including cooking, cleaning, washing, although it is likely they have short periods of more energy. They will usually be able to do one out of 3 household activities in a day for example. They have usually stopped work, or their studies and need rest periods, often sleeping in the afternoon for one or two hours. People with moderate M.E are likely to have poor quality sleep at night.
People with severe CFS/M.E. are unable to do any activity for themselves, or can carry out minimal daily tasks only (such as face washing, cleaning teeth). They have severe cognitive difficulties and depend on a wheelchair for mobility. They are often housebound or have a severe and prolonged after-effect if they take part in activity. They may spend most of their time in bed, and are often extremely sensitive to light and noise.
All forms of M.E can have a significant impact on an individual’s day to day quality of life and not just on their health.
ME / CFS is not just being tired.
Ahhhh… the ‘I’m tired too’ ‘everyone gets tired’ ‘I had a really long nap today’ (usually an hour). ‘so you’re just tired all the time?’ ‘have you tried yoga?’ ‘Why don’t you try and push through- if you’re tired anyway?’ ‘Have you had a piece of lettuce’ ‘Have you tried going to bed earlier?’ ‘It’s because you use technology?!’ ‘My aunties grandmas cats uncles bat had ME and they got over it.’ ‘My Dogs friends uncle had ME, turns out it wasn’t ME, it was XYZ and they died.’ cheers pal. These comments. HAHA I am really really trying to learn that everything is relative and for someone who does not have a chronic health condition may not understand. They probably are tired too. But it’s more likely to be as a result of something and temporary as opposed to long term unexplained fatigue. Their really long nap could be unusual to them and may well be very long. No body is perfect and sometimes I have to remind myself not to be so bitter. I understand people are only trying to help therefore I don’t discourage comments, but somedays… ahh the frustration. On the plus side of having ME, I definitely am exceptionally emphathetic and if I see someone bleeding, crying, in pain etc… I have lots of ways to help fix it. I guess sadly, having a long term health condition, things that help fix an able- bodied persons’ ailment don’t really work for you.
How can I support my friend/ family member with ME?
Whilst I like to remain as independent as possible, sometimes I can accept I do need help. Little things such as hanging out my washing, answering the doorbell or going downstairs to get XYZ can help me preserve my energy. My friends are pretty amazing and most of them know my hospitality skills are no longer up to par- they let themselves in the front door so I don’t have to go down the stairs and they help themselves to food drink etc from the kitchen. Helping people with ME does not always have to be through practical things- many of us have care support for that.
Regularly staying in contact with your friend or family member who is struggling is important, a text or card can really brighten their day. People with chronic health conditions can often feel left out, unwanted due to not being ‘fun’ or sad they were unable to join in. Acknowledging their limitations whilst encouraging and supporting them is a great idea. Sometimes my friends come over and we nap together or sit in silence… on days I feel rubbish this is all I need! Being able to watch my energy limits and help me pace is also super useful. If I have a burst of energy I tend to go for the ‘lets go clubbing, shopping, swimming and to the pub’ all in one day. Accepting my moment of madness and understand I rarely have energy to do these things so doing one or two could be fun but also reminding me to pace myself. ‘CALM DOWN LORENZO YOUR BODY DOESN’T WORK, LET’S DO ONE OF THESE THINGS EACH DAY INSTEAD OF ALL TODAY’ kinda thing.
ME is not caused by laziness. Apart from the obvious ‘chronic fatigue’ this is not the only symptom which accompanies the diagnosis of CFS...
Symptoms include or can be categorise into:
Feeling generally unwell and having flu-like symptoms, sweating, tender lymph nodes, sore throat.
This can often flare and last months.
Pain- aching, nerve pain, pins and needles, muscular, tendon pain, migraines, twitching muscles, abdominal pain or stomach cramps, bowel problems, back pain.
If pain is more significant as a symptom than fatigue- here is where fibromyalgia may be recognised. Patients with no pain symptoms are said to be in the minority. Although pain is definitely present in patients with ME, it is usually a secondary symptom to fatigue. Many patients do have have fibromyalgia and ME. The diagnostic process here can be hard.
Sleep- insomnia (struggling to sleep), hypersomnia (long periods of daytime sleepiness), Light or restless sleep, poor sleep hygiene or sleep reversal (your body clock works backwards.)
A lot of the support available for people with CFS involves assessing their sleep patterns.
Brain- problems with concentration, memory (“brain fog”), short- term memory issues, speech and language issues, inability to plan or organise, a poor attention span.
Commonly, those of us with ME struggle to manage our short- term memory- losing items, forgetting appointments, being particularly slow with tasks, I too also have conversations I have no recollection of due to fatigue. Many of us struggle with concentration and have poor attention span.
Nervous system- hot flushes, feeling cold, blood pressure issues, dizziness, intense sweating, poor circulation or bad balance.
I’m a sweaty beast!
Digestion- Nausea, IBS, loss of appetite, indigestion, wind, bloating, cramps, constipation and diahorrea.-
Increased sensitivities- food intolerances, odours, noises, lighting, alcohol or drugs.
The main allegens being Dairy and Wheat.
Autonomic: lightheaded, disorientation, feeling faint, palpitations, fainting, sitting to standing, laying flat to sitting blackouts.
Many people with ME also under go autonomic testing for abnormalities.
PEM or Post- exertional malaise: The exacerbation of symptoms after activity. The worsening of symptoms after partaking in any minor physical or mental activity. This can be anything from taking a shower to walking to the post box or having a phone call with a friend.
Feeling intense pain or fatigue after any form of activity or social interaction. A key diagnostic feature of ME/CFS is to do with how activities effect you- whether you’re symptoms worsen after activity etc. Post exertional malaise can be provoked by very minor exertions. (a great example of this would be, I had to post some flyers through doors on my street, no more than 15 houses- I walked… by the time I got home, I was absolutely wiped out- I had a six hour nap then went to bed at 8pm sleeping the night through till 10:30am. I continued to feel fatigued from this for the following two days & suffered pain in some joints. Including my fingers?!
MY M.E. STORY:
For about six months we assumed my fatigue was due to my depressive disorder, as we stabilised my mood with CBT and a variety of other therapies, as well as medication, it became apparent, as my mood increased my fatigue levels did not.
I took 60mg of Fluoxetine and 0.5mg of Flupentixol. ( I have put the specific amounts that worked for me, after a lot of trial and error, for any of you who may be struggling with the idea of medicating your mental health condition.)
I had hypersomnia due to my depressive disorder and suspect this could also have contributed to the hypersomnia i experience with my ME. I am still waiting on a sleep study to look into sleep disorders/ idiopathic hypersomnia. My new ‘record’ for hours spent asleep is 28 hours followed by 6 hours awake and 15 hours asleep prior.
Some Medical Professionals believe the condition to be brought on by a bout of illness, injury or viral infection, I had laryngitis about 5 times in the same year I broke my coccyx and developed the symptoms of intense fatigue. The only sensible link to how I may have found myself with ME would be here.
I got diagnosed in Luton just before I started university luckily this was for my Disabled Student’s Allowance…. Moving towns should be simple but unfortunately not- I have spent two years chasing a referral to the CFS clinic and a re-diagnosis from a specialist in Brighton in order to get the right support. I’m due to see a specialist any moment now…. oh coronavirus
No… alarms do not wake me up. I need to be physically shaken some days or woken multiple times. If woken by someone it is unlikely I will wake up. On days where my fatigue is particularly bad, my mum could wake me four or five times and I have no recollection of her even trying to wake me.
Help understanding CFS/ME:
MEassociation have amazing in depth articles into the life of those with ME- they do absolutely great work in the UK to support people with ME of all ages & all severities. They raise awareness, help run charity fundraising events and give emotional support to its members. Many GP’s do not feel confident in diagnosing ME or recognising symptoms and they therefore seek advice from organisations such as MEassociation. They work exceptionally closely with their own scientists and doctors. They have an incredibly informative website if you would like to find out anymore. Their support available is exceptional and so very detailed!
ActionforMe Have amazing guidance which is very clearly explained to help aid patients with ME explain their condition to others. They offer help in navigating the healthcare system as well as school and work with ME. Their website is particularly easy to use which as someone with the condition I find this very important. Questions can be answered simply and quickly. Many of you may be intrigued to learn more about this condition, I have linked the website to ActionforME above.
MEaction.net They aim to advocate, inspire, reach and connect. They have great information with regards to current investigations into the condition. Put a lot of work into advocating for those with the condition including discussions with parliament. They do work in internationally to support people with the same condition across the globe. For those of you who are interested in learning more information on the work they do, I have linked their website.
I cannot applaud these three charities enough in the help they have offered me in a crisis.
I’ve noticed people are very quick to focus on the negative side of disability (including myself), people refer to me as ‘the girl with tourettes’ at uni or tell me they’re proud of me, I inspire them, they don’t know how I do it- (I have to lol), whilst compliments like these are always lovely to hear, I can’t help but think I am infact just a ‘normal’ person who has additional challenges. Everyone encounters struggles in their lives- mine just happens to have happened at a young age and may last a long time. Having a disability (or 3) changes your life dramatically and the way an able- bodied person will live is exceptionally different to someone who suffers illness.
It is clear to me, many people who have not experienced illness themselves or been impacted by a poorly family member struggle to understand the concept that disabled people aren’t babies, have aspirations, goals & intelligence. We as humans are all very quick to focus on the negatives surrounding life. All things doom and gloom, the rubbish stuff that comes along with disabilities- be it symptoms, societies views or just simply feeling rubbish about life.
I think it’s important that I share why I think disabled people are amazing. Many employers are quick to think ‘I won’t hire them they’re disabled they’re unreliable,’ despite this being against the law hey ho! I believe so many disabled people are incredible, they come on par with other lovely humans. Focusing on personality type as opposed to abilities is important. If you have a driven disabled person, why should they be belittled? A person’s personality affects their work ethic, someone who is able bodied may not have half the qualities a disabled person may have and vice versa. I want to share the positives, the qualities that many disabled people have acquired, obtained in their human systems due to the powers of being disabled.
DISABLED NOT LESS ABLE
Disabled individuals have intense willpower.
Disabled people have alot of empathy, they have experienced the worst pain, nausea, diahorrea, bleeding, bruising and are therefore able to understand and empathise with others.
Disabled people don’t give up– they can’t. They show resilience. Giving up is not an option when you find yourself chronically ill. You have to keep going to appointments, physio, taking meds or you’re going to find yourself feeling worse and worse.
Disabled people think outside the box, Life isn’t always the most accessible, this means that disabled people have to be quick thinkers and be able to create their own peculiar, yet functional ‘life hacks’. (I’ll do a post of some of mine soon!)
Disabled people understand how to care for others as they’ve spent long periods of their lives needing to be cared for.
Disabled people are excellent first aiders. (although I’ve discovered I’m not strong enough to do CPR on my first aid course, I definitely have some great medical knowledge that the average Joe won’t have. I bet I can stop you fainting, bleeding, panicking, crying etc..
Disabled people are opinionated: Disabled people spend much of their lives advocating for themselves. I think its so important as a human being to have an opinion. People with a disability usually have a very strong sense of right and wrong due to finding themselves in vulnerable positions.
Disabled people are strong minded: They know what they want and not much will get in the way of what they would like to achieve. We are determined. The only thing likely to stop me is infact my health.
Disabled people can be very organised: Ha. I say ‘can be’, I used to be the most organised person ever… since becoming chronically ill, I am a nightmare!!!! I frustate myself with the inability to organise my medication, cook proper meals and remember things. Many disabled people are exeptionally organised, as if they do not keep their medication and paperwork sorted they would find themselves in a big fat mess. Not organising your life as a wheelchair user can lead to ‘trip hazards’ in the home. Not managing your medication well can be exceptionally dangerous.
Disabled people can have a great ‘3rd opinion’ on situations: I like to think I have two opinions, my first thought and my opinion as ‘the old me,’ ‘the healthy me’ and the opinion of someone who suffers with mobility and access needs. Having a mindset where you are able to see things from different points of view is a great quality that comes with being sick!
Disabled people are problem solvers: A prime example would be how to get around physically inaccessible situations. They are quick thinkers, able to foresee all the things that may go wrong and preplan for them. Disabled people aren’t phased by much and are able to approach emergency situations in a calm matter. Disabled people understand how to ‘fix’ problems such as coming down off medication, forgetting medication, breaking things, being unable to do things, everyday struggles and dilemmas- disabled people are used to facing.
Disabled people are understanding, important and helpful.
According to Census UK, only 18% of the UK’s working population have ticked the disability box-, yet 22% of the UK population are considered disabled. I understand many disabled people are too ill to work, however do people not tick the disability box due to the fact disabled people are worried of their employers potential discrimination due to their disability? Does disabled always mean they are not as good at their job? NO! Disability does not affect your personality anymore than your personality affects your personality!
I hope this post makes you appreciate all the positive qualities in yourself or disabled people in 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!
This has been sat in my drafts for a good few months as I’ve added ideas… It was almost ready to post then the Coronavirus was plonked into our lives, I thought it would be a good idea to adapt this to tasks which have been made readily available during the months of COVID-19 also.
CITIZENS ADVICE UK: “Some people or organisations like employers, shops, local authorities and schools must take positive steps to remove the barriers you face because of your disability.”
“Higher Education providers/ The workplace/ housing/ shops must make reasonable adjustments to ensure that you can use the education and other benefits, facilities and services provided as far as is reasonable to the same standard as non-disabled students.”
As a member of the chronically ill community, I can’t help but feel a little bitter. It really really frustrates me to say, it is highly likely that many resources which have been made available for all with internet access during COVID-19, including online study methods and virtual tours, are not likely to be available in the months post COVID-19.
I know I, along with others are really holding onto the hope that ‘every cloud has a silver lining’ perhaps companies will begin to understand accessibility to all isn’t particularly difficult. The Equality act 2010 – THE LAW! States ‘there is a duty to make reasonable adjustments’ Realistically, we all know this is unfortunately not a very inforced law.
Pre- COVID-19 how realistic was this, that these reasonable adjustments were it into place properly? Disabled people are often met with ‘this isn’t possible’ ‘no’ COVID- 19 has proved our needs are possible to meet.
I spent over a year at University fighting for the right support, only to be repetitively told it was not possible, I had to pause my studies due to the lack of support for my health conditions. Frustratingly, COVID-19 arrives in our laps and everything changes ‘simply’ overnight to accommodate all able bodied students and workers needs. Now I understand that it is a bit of a faff to accommodate one students needs correctly, but I really do believe if adjustments can be made for 20,000 members of staff and students during a pandemic, it shouldn’t be difficult to source correct measures to help students under the disability and dyslexia teams.
CONTINUE TO CARE
When things finally calm down with Covid-19, it will be really interesting to see what positives arise. Remember people will be dealing with loss, grief, financial struggles, anxieties and those classed as ‘high risk, vulnerable or extremely vulnerable’ will still be sick. It is absolutely heart-warming to see the support being offered to us by COVID-19 Mutual aid support groups. As lockdown is lifted, people begin to become busier, I just hope the people mentioned do not go forgotten. Stay in touch with your sick and elderly neighbours, chat to people when you’re out. Offer to get people something at the shops and still call your friendsregularly for a chat. COVID-19 has brought issues that many people face everyday into the realities of everyone else’s lives. Keep resources readily available for all. I believe empathy to be one of our strongest powers as humans.
This post is not intended to be a big fat moan and simply help you to keep busy when you’re sick in bed, while understanding the positive impact of this situation. I’m going to leave you with the thoughts above and get on with this now:)
NOW: How to keep your brain entertained if you’re stuck in bed poorly.
Firstly create a Fatigue scale- to see if you should be resting or are okay to do some activities.
Start a Bullet Journal
OMG I wish I was good at art! Some people have the most beautiful bullet journals! They’re really good to track symptoms.
Donate to a charity: Charities are struggling now than ever, I’m sure if you’re anything like me you’ll have saved money on activities, restaurants, pubs, shopping etc this month! Consider donating your daily coffee allowance to a charity of your choice. Perhaps splitting the money between more than one could be a nice thing to do too.
Share something that makes you smile on facebook
– I can spend hours getting lost in the videos section of Facebook!
“Invest in rest”
Save your spoons. – This is in reference to my perious post, save any excess energy for days you may need more.
– You’re poorly & rest isn’t important!
Plan recipes for other people to cook you 😉 — I plan to make a disabled friendly cooking/ recipe book at some point, in the meantime get others to chef up your creations:)
Cuddle someone or something.
Write down what you may need help with.
Do an online food shop
– this can make me really tired, so don’t be worried if it takes you a few days to complete!