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!
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!
Amsterdam Schiphol Airport is the heart of travel in Amsterdam, hire bikes, get the train, tram, fly whatever & wherever.
I’ve read many a positive post about trams in Amsterdam & how great they are. I was told they would always let you on with your mobility scooter… I experienced differently. Twice. Apparently battery powered mobility aids don’t count as mobility aids according to some drivers. Be prepared for a little ignorance. I wanted to check on this as perhaps information online was misleading. After going to the ticket office, it was confirmed it was in fact against the law to refuse a disabled person access to public transport due to their disability. Always check things & know your rights.
– Blue Boat Company: This is a company which runs canal cruises which enable you to take your wheelchair or rolator. You can be put on the boat via a lowering lift & I think this is absolutely fab! We didn’t do this & simply did a regular tour but I heard about it & it sounds amazing for those with less mobility. The steps down to the boats were a little slippy & steep especially for a clumsy person like me! We simply used a bike lock to tie up my scooter on the little pontoon & popped it on charge in their ticket office, (with a little bit of persuasion from a tourettesy smiley girl 😉 ).
– Star Bikes Rental.
WOW! The loveliest man ever! He offered advice on where to go as a Brit living in Amsterdam help to use the mobility aids, the best range of mobility aids ever!!! You can get normal push bikes there too!
– Access: One thing I would mention is that ALOT of the touristy type shops have a big step up into the shop & inside too. There was no room for my scooter in some ‘tat shops’ which sucks because I absolutely love to waste hard earned money on a pile of crap that sits in the drawer for the rest of my life.
– Cobbled streets: There most definitely were some back streets that perhaps were not the best for a girl on wheels. Cobbled streets = Very bumpy ride. As fortunately I am able to walk short distances, I saved my spoons and locked up my scooter to be able to do these streets.
– Cyclists own the roads: In Amsterdam cyclists are the ‘lorries of the motorway’ don’t get in their way or risk losing a limb.
– Hotel shuttle bus/ coach can be an accessible cheaper save you getting tired.
– Bridges are everywhere- good flat!
– Arrange bigger taxis in advance.
– Do not walk or stand in bike lanes you’ll get knocked over
– Stay on same side of the road as cars when cycling, on the right follow blue bike signs
–Museums: To be really honest. I’ve never really liked museums & I’ve done a lot in my time- which is fab & very important/ educational for kids (thanks mum for the endless amounts of castles, mountains & museums as a child 😉 however I definitely have over done it. I don’t know whether it’s because I’ve always struggled with anxiety & found them to be overcrowded & trigger claustrophobia, because I’m the clumsiest person ever & worry I’m going to ram into a 5000 year old artefact and smash it into millions of pieces. Or frankly because they are so tiring. Either way too hot or way too cold. Quiet. Strangely quiet. Lack of seats. When in a museum I find myself looking around waiting for the next bench. I need to sit. It’s exhausting. Anyway! When we were in dam we decided not to do hundreds of museums. We did really want to do a few- Anne Frank being the main one!
– Van Gogh museum is wheelchair accessible.
– I’ve heard good things about the Heineken experience & it is very accessible fun place- although I would recommend you don’t drink if on prescription meds.
–Rijksmuseum- Accessible, check their website for more info.
– ANNEFRANK: I really really wanted to do this but I messed up trying to book tickets (you have to book months and months in advance) I’ll definitely be going back to Amsterdam to try and do this! So Anne frank tickets! You need to book online on their website. Further tickets get released on the day (9am I believe) I’ve heard you can queue outside but you will be there for hours- queues with Tourettes & fatigue don’t seem to go hand in hand. Unfortunately, it is not all accessible. The Shop, restaurant and main exhibit are. If you have seen the cringiest yet all time teen favourite film ‘ The fault in our stars’ you’ll know this already. Amazingly Amsterdam have an ‘Anne Frank virtual reality tour’ Guide Dogs for those who are hard of sight are not allowed inside the Anne Frank Museum although if you are hard of hearing they do have scripts of written text as oppose to audio.
– STROOP WAFFLES ARE SO GOOD OMG OMG OMG HAVE THEM ! You can get these caramel waffles everywhere and anywhere! They are definitely overpriced in the airport/ train station & in tourist shops- get them from little grocery store type places! We got loads and ate them for breakfast. Also a really good idea for someone who is very fainty as they’re a good little sugar rush to carry around when you are out and about!
– Loads of good vegan & gluten free options!
– Tonnes of amazing coffee shops, restaurants & bakeries.
XXXX Know the difference between a coffee shop and a coffeeshop! XXXX
– Coffee shop / Café = A shop that sells coffee. People don’t generally call these coffee shops, rather cafes. There are a lot of fantastic cafes in Amsterdam from new and modern to old and atmospheric. THIS IS A CAFE!!
– Coffeeshop (no space!): A shop that sells marijuana. Some of these shops are really only counters where you can purchase marijuana for consumption later. (Some have a small room in the back for smoking purposes.) Don’t be that person asking for green stuff in a shop that sells coffee. Or going in for a coffee & cake on your mobility scooter & coming away feeling a little groovy.
GOOD TO KNOW
– People: People are so lovely! So chilled. Chatty. Always happy to help.
– There are so many hotels in Amsterdam & lots are run in chains.
– Apps: Able Amsterdam & Accessaloo.
– Pretty picture spots, any canal anywhere! Near the Floating catboat. Amsterdam Centraal Station. Vondelpark. Red light district- avoid taking any photos of the women!
– Excursions: Outside of Amsterdam you can see some pretty cool things!
– BUY SOME Sketchers D’lites! I PROMISE YOU THESE ARE THE COMFIEST SHOES YOU WILL HAVE EVER TRIED. You won’t regret it. Yet again, I’m writing about Sketchers- specifically ‘Sketchers D’lites’ these shoes are the best for walking- I have very flat feet & they are perfect. Memory foam base. Breathable. Wow. People laugh at me because sketchers are typically a 80 year old lady shoe, however once you’ve converted to sketchers it’s unlikely you’ll look back! I am in fact looking to get memory foam insoles when I see my podiatrist in order to feel as comfy as I do in Sketchers in every shoe! As a bonus they’ve started to sell more attractive & a wider variety of D’lites.
– I didn’t know this till now BUT- It’s the law to carry a form of ID everywhere you go- driving license, passport or identity card.
– Avoid Big Bike tours, unless you really want to annoy local residents.
– Dam square your wheels might get stuck maybe a good idea walk round here a little if u can or avoid & go elsewhere as there is tonnes to see! Or just brave it, if you’re feeling a little risky just prepare for thinner wheels or walking sticks getting stuck.
– 112 – this is the emergency services number.
– Get a hotel near to things if you are planning on lots of day trips.
– Stay safe & be careful with any of the funny green stuff they sell in Amsterdam.
I have started a group for people based in Brighton living with a chronic health condition or invisible disability. Everyone who fits this criteria is welcome. We now have 64 members which I’m incredibly proud of (specifically as I started it & everyone in the group are complete strangers!)
So we have a meet up coming up- I’ve sourced lots of art materials & boxes & we will be making ‘happy boxes’ or ‘kindness kits’ Below I have listed a few ideas of things you could add to make your own or one for a friend! (PHOTOS WILL BE ADDED WHEN WE HAVE ALL MADE OURS.)
– CANDLES: Pretty looking ones or nice smelling ones! Adding a lighter to the box would be helpful!
– ESSENTIAL OILS: I have an air purifier in my room and I’m obsessed, I have it on most of the time. They’re about £20-£25 on amazon. Lavender oil is amazing to help you sleep, tea tree- if you are having skin or breathing problems- eucalyptus, spa scents, peppermint- whatever works for you! You can also burn oils with tea light candles under them as a cheaper alternative.
– PILLOW SPRAY: Lavender pillow spray proven to help you sleep! If it’s good enough for babies it’s good enough for you!
– EPSOM SALTS& A BATH/ SHOWER BOMB: If you don’t have a bath 🛀🏻 lush sell amazing shower bombs & scrubs- massage bars all sorts (I AM OBSESSEDWITH LUSH!) If you do have a bath- Epsom Salts are amazing for relieving muscle aches and pains. (Even if you’re not chronically ill- I’d recommend Epsom salts once a week or post exercise)
– HOT WATER BOTTLE: I have a lovely teddy that I put in the microwave and it has lavender scented beans inside!
– £20: treat yourself to a takeaway! For emergencies- you may be feeling super broke & down- if you remember you have a spare £20 for emergencies in your happy box I’m sure it’ll help a little. For me I have spare cash for if my health is atrocious and all I’ve been eating is crisps and bananas- I’ll order a healthy ‘ish’takeaway.
– SNACKS: Crisps, chocolate, dried fruit, crackers, nuts, sweets, foods that don’t go off but make you feel good.
–TISSUES & WIPES: If you fancy a cry, have a cold 🤧 or are clumsy like me and spill stuff all over yourself!!!
– COMFY SOCKS: Because fluffy socks fix everything! (Although if you know me- my feet are always out LOL I like to be bare feet a lot!
– SPRAY: Smelling nice can make you feel so much better.
– FRESH PJS: Maybe a new pair, unworn, your favourite pair, a sexy pair, a comfy fluffy pair- anything to make you feel more alive.
– POSITIVE CHILLED PLAYLIST ON SPOTIFY: I shall do a blog post on my favourites soon. Please don’t sit and listen to depressing, heartbreak sad type music! It’ll make you feel worse – I did this for hours and hours when I was young to wallow in my own self pity. You can have chilled music that is still positive.
– BUBBLEWRAP: Super satisfying to play with perhaps if you’re feeling a little anxious – great for control issues as you are in control of each little pop.
– A PRETTY NOTEBOOK: stationary is the most satisfying thing ever I could spend hundreds of pounds on pretty stationary- tiger, Poundland & primark have cheaper alternatives. Write down how you’re feeling. Do some cbt exercises (I’ll do a post soon) plan out your week & anything you know you’ll forget!
– COLOUR PENS: To add to the aesthetics! Write in fun, pretty colours.
– A LIST OF YOUR ACCOMPLISHMENTS, THINGS YOU ARE PROUD OF: Leave nice little notes for your self. Write 3 things you’re proud of or have accomplished in the last year & 5 years.
– PICTURES: Photos of people, places & things that make yousmile- caption them to add to your memories.
– FILMS/ BOOKS: A list of good films or books to read when you’re in ‘xyz mood’ (I’m going to do a post on these soon.)
– MINDFULNESS COLOURING: You can buy super cute mindfulness adult colouring books- it’s a great de-stresser if your joints can manage!
– MEDICATION: Don’t forget to take your medication & drink properly!!!
Both photos are taken on the same day- I would have 100% been unable to enjoy myself as much as I did without the use of the mobility aid & my friends as carers, I’m going to do a blog post about this very soon!
Having a chronic illness at such a young age definitely causes a lot of confusion- particularly to uneducated members of the public.
I have complied a list of funny comments I’ve received in response to my tics, my need to rest & any obvious symptoms.
My friends and family:
It makes me quite emotional thinking about the immense love I have for these people.
The insults they take from me, the cleaning up of my poop & sick, the fun and emotional support they offer is overwhelming.
Insults. I told my friend she had big teeth when she asked me if she had anything in her teeth- she is very self conscious of her teeth as it is and I was mortified with what my Tourettes came out with. She in fact does not have big teeth and was able to laugh it off.
I’m constantly reminding my 5’0 foot mother just how small she is ‘tiny little lady’ ‘so cute and tiny’ ‘what’s it like down there being so small’ ‘shh you are small’ in fact anyone smaller than me (5’6) tends to get the brunt of my Tourettes. This is usually a humorous tic although draining when surrounded by small people!- A younger family member definitely got the brunt of this when I constantly ticced tickling his chin saying I like small people. This went on for 3 days. Sorry. WEIRD.
If I am out in public on a ticcy day I definitely find myself in some odd situations!!
My tics tend to have a daily suspect which is rather amusing- for example when at a large family party (extremely stressful with Tourettes despite how supportive my family are- will save for another post) I chose to constantly refer to someone as the ginger one ‘does he know he’s gone ginger’ ‘shh you can’t talk ginger’ ‘XYZ is ginger’ when in fact – he is the blondest person you will have ever met & I have no problem with gingers. People have learnt to take everything I say with a pinch or three of salt.
Sometimes my tics like to perceive me as obnoxious’ I’m the only talker here’ ‘I’m the cleverest ever’ ‘Shh I have the best brain’ ‘you’re boring’ I often mimic what people say in a ‘taking the piss’ kind of voice. If people become offended it’s usually because they don’t know me & how much of a nervous, people pleaser I am!
Having a blue badge:
Having a blue badge has 10000% made a dramatic improvement to my quality of life. I am amazed at how much energy I can save by parking that little bit closer (although I usually only take advantage of the badge when driving alone- (I’ll save that for another post!) Words can’t express how grateful I am for it- it makes me able to do tomorrow as well as today and get a lot more done each day.
I’m becoming used to the stares from both disabled badge users themselves and able bodied people. The stares of ‘whose badge has she stolen?’ Or ‘should she be parking there?’ ‘she’s not in a wheelchair?’ The stares from these people don’t need to have any words to accompany them as i know exactly what they’re thinking. Gaining a blue badge is a really difficult process and you have to be very worthy and frankly pretty sick to be approved. I assure you it is my badge and I do need to be using it.
I often feel a rush of guilt as if I need to be acting a certain way getting out my car as a person with a disabled parking badge. But my badge is mine for a reason. I’ve had many traffic wardens check my badge & many an argument explaining they should educate themselves on invisible disabilities.
Please bear in mind this is just one example- The people mimicking my tics or giggling is an everyday thing. Ofcourse I understand as Brits it’s within our ‘culture’ to stare at things which seem a little ‘weird’ or unusual but the responses to my tics make me laugh. I’d say there are 3 types of people with my tics.
– The ignorer: These people make me laugh, they pretend I didn’t just say something really weird out loud or make a funny noise or claim they didn’t notice- it’s very sweet but it’s also a big lie hahah!
– The questioner: I like these people they want to know more about my tics although please
– The laugher: The purest of them all- positively these people don’t think before they speak and simply respond to my tics in a natural human being response.
Laughing is always allowed but showing some empathy that it does my head in and your 2 hours spent with me is only 2 hours out of a 24 hour day 7 days a week. Talking about the tics make it worse. The only way to stop the tics is acknowledge the tics once & then don’t talk about the tics.
Whilst on the London Underground (a task I dread doing- the amount of fatigue it causes to my body is ridiculous) I was having a particularly bad ‘Tourettes attack’ most likely due to the fact it was so busy and that I was so exhausted,
I had a offensive yet humorous encounter with a middle age lady and her two children. I always wear my priority seating badge when on public transport as I find it embarrassing to ask for a seat- when in reality I really fricking need it!! (Saving my thoughts on this for another post) Anyway! There I was ticcing away inappropriate, strange but harmless tics- mainly about random animals, eggs and tiny people?!- never swearing (only 10% of people with TS swear contrary to what is portrayed in the media!) and a lady on the heavily packed tube grabbed both her two children by the hands stared at me and moved quickly to the next carriage. If I was in a bad mindset that day I would’ve been upset- but instead my Tourettes made the situation humorous for everyone else & I decided she was the one with the problem and if she felt the need to run away from me with her children she should pray that TS doesn’t come out the blue for one of her children as it did for me & as I am actually a fully DBS checked babysitter and a very good one at that- she should be less ignorant.
Some of my views may come across a little bitter- in fact yes I am, surely you would be too. I spend 80% of my time being as positive as possible so for that I feel no problem with the 20% of miss Pessimistic Perry. I’ve learnt to accept my new way of life so hopefully other people can too:)
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.