How to be disabled… All the things no one tells you about being sick:

A little poorly, Accessibility, Fibromyalgia, mental health, Myalgic Encephalitis, Self Care, Tourettes Syndrome, Travel, University, Womens health

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.

https://www.scope.org.uk/advice-and-support/days-out-tips/

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…

Carer Access Card: https://www.accesscard.org.uk/carer-card/

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.

https://help.skiddle.com/hc/en-us/articles/360005129531-I-d-like-to-purchase-a-Personal-Assistant-Carer-ticket

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.

https://www.english-heritage.org.uk/about-us/contact-us/

Similarly National Trust do the same. You can sometimes hire scooters for all terrains if you may have an issue with wheelchair accessibility aswell as a guide or a golf buggy. Just ask.

Access plus one national trust

Accessible walks in nature for those in wheelchairs: http://walkswithwheelchairs.com

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.

BE KIND!

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)

VAT Exemption for disabled people: https://www.gov.uk/financial-help-disabled/vat-relief

https://www.completecareshop.co.uk/?gclid=Cj0KCQjwiYL3BRDVARIsAF9E4GchK4J-jJJcU4SPquobm8WMubar1Uv8D63XwKUV6TMKL0aax9KXxlUaAoiFEALw_wcB

https://www.mobilitysmart.co.uk/daily-living-aids.html?gclid=Cj0KCQjwiYL3BRDVARIsAF9E4GdkvBzq0JMCZZqDu3foWQ52cHZ4BBIwDXsp3xc1lGAcLTHcGUirFPwaAsPtEALw_wcB

https://www.nrshealthcare.co.uk/articles/news/daily-living-aids-products-information-and-advice

https://www.manageathome.co.uk/around-the-home

https://www.tenura.co.uk

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.

https://www.disabilityrightsuk.org/being-control-getting-personal-assistants-pas

https://www.nhs.uk/conditions/social-care-and-support-guide/money-work-and-benefits/personal-budgets/

https://www.gov.uk/apply-needs-assessment-social-services

Disabled Facilities Grant: You could be entitled to up to £30,000 home adjustments to make your house adaptable for you.

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.

https://www.moneyadviceservice.org.uk/en/articles/disability-and-sickness-benefits-check-your-entitlements

https://www.gov.uk/financial-help-disabled

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!

KNOW YOUR RIGHTS: https://www.gov.uk/guidance/rights-of-disabled-passengers-on-transport

COACHES: https://www.nationalexpress.com/en/offers/coachcards/disabled

LONDON TRAVEL: https://tfl.gov.uk/forms/12387.aspx?cid=accessguides

FREE BADGE/ CARD FOR TRANSPORT: https://tfgm.com/public-transport/please-offer-me-a-seat

GREATER ANGLIA TRAVEL: https://www.greateranglia.co.uk/about-us/news-desk/news-articles/‘offer-me-seat’-badges-now-available

GREATER NORTHERN TRAVEL: https://www.greatnorthernrail.com/travel-information/travel-help/priority-seat-card

WEST MIDLANDS TRAVEL: https://www.westmidlandsrailway.co.uk/travel-information/accessible-travel

THAMESLINK TRAVEL: https://www.thameslinkrailway.com/travel-information/travel-help/priority-seat-card/can-i-get-a-priority-seat-card

SOUTHERN RAIL: https://www.southernrailway.com/travel-information/travel-help/priority-seat-card

LONDON TRAVEL: https://tfl.gov.uk/transport-accessibility/please-offer-me-a-seat

SOUTH EASTERN RAIL TRAVEL: https://www.southeasternrailway.co.uk/travel-information/on-board/priority-seating

RAIL CARD DISCOUNTED TRAVEL: Disabled persons rail card 1/3 off travel

PLANNING A JOURNEY: https://www.gwr.com/plan-journey/journey-information/passenger-assist

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…

https://www.gov.uk/toll-concessions

Congestion charge is free in London for Blue badge holders and any other car travelling in their party.

https://tfl.gov.uk/modes/driving/cc-blue-badge-before-you-begin-proxy-30923

DON’T PAY TAX ON A VEHICLE USED TO TRANSPORT DISABLED PEOPLE: https://www.gov.uk/get-vehicle-tax-exemption-disability

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!

Disabled id card: A formal ID to prove your disability

‘Disabled Band Reduction Scheme:’ https://www.gov.uk/council-tax/discounts-for-disabled-people

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.

http://www.ncphlexicare.com/claim-your-free-blue-heart-badge

Cards tailored your disability need.

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.

https://www.brighton-hove.gov.uk/content/leisure-and-libraries/sports-and-activity/leisure-card

PRESCRIPTIONS: Medication can be expensive!

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.

https://www.nhs.uk/using-the-nhs/help-with-health-costs/get-help-with-prescription-costs/

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.

APPS:

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 calls as 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.

Access your life: Pre loved medical equipment for sale and mobility aids as well as reviews by disabled people. https://www.accessyourlife.co.uk/

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!

https://www.universalmedicalid.co.uk/cat_uk/medical-ID-bracelets-62?gclid=Cj0KCQjwiYL3BRDVARIsAF9E4Ger1RtATf0TKfgnSCoxuaPdGIcMddZq9XAWQn8AYjN7nKKb4VGeIQ8aApDuEALw_wcB

I chose a sterling silver necklace due to allergies and added the little elephant on cause it’s cute!

https://www.theidbandco.com/Medical-Bracelets?gclid=Cj0KCQjwiYL3BRDVARIsAF9E4GeC3tEf74IGnJtYneDM9VKh99JPeERDfAF-6hNm3GwIlB7ePTdeL3EaAumwEALw_wcB

Many charities offer information cards that look a little bit like a debit card or a gift card, examples would be:

I am autistic card

autism alert

I just can’t wait cards:

Check with a charity that works with your condition as they may have something similar to the cards above.

I am also happy to send you a free PDF like these, which you can print out on card or I can post to you one with or without a lanyard for a small fee.

I can’t think of anything else right now but I will keep updating this- the links will remain here and I will create a little leaflet which should be more accessible to read.

Any questions about any of the aspects mentioned or not listed, please do message me.

OTHER POSTS YOU MAY ENJOY:

Keeping busy during COVID-19

mental health, Self Care, Uncategorized

I am planning to self isolate due to my blood tests all being funky the past few months- still unknown + after following this advice on the ME association website…

“The key points are:

1.  From now on anyone with coronavirus symptoms (i.e. dry cough and fever) should self-isolate, along with every member of their household, for 14 days.

2.  Everyone now needs to be taking strict social distancing measures, which involve avoiding:unnecessary social contact with other people.

AVOIDING: unnecessary travel, meetings and public gatherings, going to bars, restaurants, cinemas, theatres etc.

3.  The Government are advising that those who are at increased risk of severe illness from coronavirus (Covid-19) infection are particularly stringent in following social distancing measures.

In addition to the elderly and people who have pre-existing medical conditions (CS note: ME/CFS included), pregnancy has been added to the list – although information on the effect of this virus on both pregnant women and the unborn child remains uncertain.”

I’ve written a big fat list of ideas for if you find yourself stuck not knowing what to do. Here’s where normally abled bodied people may begin to empathise with the chronically ill and elderly. We are pretty good at spending all day in our beds + yes our mental health does suffer!

I am now into day four of self isolation. I am isolating myself as much as possible. Brighton have some incredible systems set in place including whatsapp groups of neighbours on each street with first aid, safe guarding training, people who are just genuinely lovely and want to help others.

DAY 1: Freshly done nails mid changing sheets.
DAY 2: PIZZZZZAAA PARTYYY

For when you start to go a little stir crazy…

Plan art projects

  • Posters
  • Cards
  • Letters
  • Paintings
  • Drawings

Play Sims 4

  • Download it on PC with origin.

View online first aid videos and take notes

Learn a new skill

  • Educational
  • Fun

Take an online course

  • There are lots of free ones + cheap ones

Organise work/ uni folders

  • Colour code them
  • Organise in sections
  • Create title pages
  • Contents

Go on kids BBC bitesize and fresh your science knowledge.

Teach yourself a 1 player game

Cook something new

Watch a YouTube tutorial

  • Cooking
  • Makeup
  • Art Skill
  • Computer game

Learn to do cats cradle by yourself

Plan your weeks

  • Give yourself a schedule or routine

Yoga at home

Excercise workouts/ videos at home

  • Lucy Wyndham- Read has some good free Hiit workouts.- YOUTUBE

Go in the garden (if it’s not raining)

  • Do some gardening
  • Mow the lawn
  • De-weed
  • Clean the patio
  • Jet wash anything and everything

Make a pretty mask to protect against catching germs

  • Make sure its secure enough to work

Make a budgeting list

  • Money might be uncertain but theres lots of free things in the world you just need to work out you expenditures
  • Excel spreadsheet your spendings

FaceTime friends

  • Group FaceTime works for up to 30 people

If you have a business, sort out admin including money, records, up to date learning

Floss

Learn some basics of a new language

Sharpen your knives

Educate yourself on issues by reading charity websites/ blogs

  • awareness is important

Stretch

Look up happy news!

Teach yourself a card trick

Sew holes up and buttons on clothes.

Create a Bullet journal

  • You could spend days doing this! Pinterest has some cool aesthetically pleasing tips.

Create your own puzzle with paper/ card and pens

Read a book

Watch a film

  • Add some to your watch list

Binge watch a series

Start a diary of emotions

Buy from local online shops!

Bake cupcakes

Meditate

Monitor your health symptoms

Call an elderly person and have a chat.

Volunteer.

Virtual dinner date / coffee date.

Get up and go on a walk in the countryside

Catch up virtually with an old friend

  • Have a virtual coffee date

Learn some BSL or Makaton.

Beauty Self Care 💜

Wax or Shave

Hair mask

Do funny makeup looks

Practice a new hair / makeup look

Fake Tan

  • Exfoliate
  • Tan
  • Moisturise

Give yourself a Facial

Tidy up your brows.

Learn a new beauty skill

Paint your nails

  • Gels?
  • Nail art?

Give yourself an at home spa pedicure

Moisturise everything

  • Coconut oil masks wrap cling film on top.

Create your own natural beauty products

  • Scrubs
  • Lipbalms
  • Face masks

Design a tattoo

  • I’d never get a tattoo but I think its pretty fun to draw them!

Have a bubble bath

  • EPSOM SALTS!

De-clutter + Organise 🛠

Tidy all kitchen cupboards

Donate any unwanted dry food to food banks

  • Arrange collection if you aren’t going out.

Hoover

  • Don’t forget the skirting boards

Deep clean bathrooms

  • Under or around the bath

Clean your oven

Clear out your wardrobe

  • Arrange Donation Piles
  • Keep Piles
  • Give to friends/ Family

Re organise furniture in a room

  • I do this all the time + alway do my back in so be careful please!

Having weekly activity aims

  • Health
  • Emotional
  • Physical
  • Mental Excercise

Teach yourself an accent or 3!

Brain training or Mental maths

Improve a skill you already have

Write ANYTHING!!!

Learn some origami

Print old photos and create a scrapbook

Edit your Spotify playlists

  • Have one for each mood, genre, era

Put things online to sell

  • Depop
  • Ebay
  • Gumtree
  • Facebook Marketplace

Delete old emails

  • Filter them in folders if needed

Delete old photos

  • Delete duplicates
  • Put into albums of events
  • Add peoples faces (comes in handy for birthdays)

Add peoples birthdays to your calendar!

Back up your whole life on to a hard drive

De clutter that random drawer of stuff (I have 3)

Chuck out the rubbish under your bed.

Make wish lists online – order them by clothes, beauty, diy, Home, educational etc.

Create Pinterest Boards

Fix that computer/ printer/ techy thing you’ve been ignoring for months

If you’re stills stuck for ideas or want to know what you could do to keep kids busy, let me know! I have tonnes in my crazy brain!

STAY SAFE, KEEP HAPPY + enjoy some downtime

xxx

For those rubbish days..

Self Care

KINDNESS KIT / HAPPY HEALTH BOX

For a bad day.

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.

@tisseranduk have some lovely oils

– 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 OBSESSED WITH 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)

I’m absolutely obsessed with Weatlab salts! You can get them in Boots!

– 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.

Spotify playlist

– 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.

BUBBLE WRAP: 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 you smile- 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!!!

BEAUTY ROUTINE FOR THE CHRONICALLY ILL

Self Care

Hey! I’ve been having a poorly phase forgive me- I’m on the way back up. Whilst I’ve been feeling sucky; sicky, sore, sleepy- I had a think about what I could write a blog post on to help you feel more normal on these kind of days if you’ve got to see humans.

The thing is… If you saw how I looked when I’m having a bad day you’d probably run a mile. I’m giving these suggestions but I rarely take my own advice. Maybe I’ll start. This post is written with intention to make yourself feel brighter even if your only plan for the day is to go back to bed. I tend to tint my eyebrows and do gel nails before I get to the point I’m too sick, this is always a good shout as it makes me feel slightly less gross when I am super sick. If you can cope with the pain of waxing (I absolutely cannot!!!- maybe get waxed regularly too to save you becoming a chronically ill hairy gorilla) – again if that’s what you’re into you do you!

BRUSH YOUR HAIR I REPEAT BRUSH YOUR HAIR!!!!!!!!!!! Or ask someone else to do it for you. When I lived at home my mum used to brush my hair for me atleast once a week, I’d sit on the floor in between her feet like I did when I was a child & shed spend around an hour brushing out the matted fluff ball that was my hair. Now I occasion bribe a uni friend to do it for me. This is especially those of you with conditions causing you to sleep a lot or struggle with self care. I have ME n depressive Disorder. When I tell you my hair gets matted. It’s bad. I’ve had 4 hairdressers brush my hair for 45 minutes between them all. If you don’t do any of these cause you aren’t too bothered (honestly I can’t be with most of them.) Please just run a brush through your hair as often as possible. Curly hair girls in particular. (I might do a little crazy curly frizzy dry hair help post soon- but for now don’t brush it dry if you’re planning to leave the house – if it’s curly it’ll go mad) I sleep ALOT imagine bed head right… now times it by a 10, 15, 18, 26 hour nap right… now add curly hair… you see. Brush your hair when you can or get some help to.

– DRY SHAMPOO & lots of it! In every bag/ drawer. My hair gets greasy in like 0.3 seconds so if you’re anything like me you could invest in a good dry shampoo to make you feel a little fresher. Greasy hair is never a good look.

@colabhair do my faves x

DEODORANT WITH AN EASY SPRAY THINGY AND TONNES OF IT. Have loads of spare deodrants incase you have flare ups where you can’t get out of bed for a while. I get super super hot sweaty flushes so deodrant always helps. Some can be hard to open if your hands don’t work too good so bare that in mind. (Lol everyone uses deodrant I don’t know why I’m giving deodrant advice- I’m a sweaty person.)

The best of the best x

WATERPROOF MASCARA, crying in pain, crying cause you’re sad, sleeping and smudging tonnes of gunk everywhere. Making yourself look a little more alive & less like a potato. Personally I don’t really use water proof mascara, but for the times I’ve woken up after a fat nap or calmed down after a big tic attack, sometimes it’d be nicer if I didn’t have black mascara all down my face.

Post 7 hour nap and only slightly smudged 🤪

– BLUSHER HIGHLIGHT BRONZER COMBO, let’s face it without these products you’re gunna be looking and feeling pretty grey. Slightly ‘Zombified’ Blush, Bronze, Highlight . They’re super easy to apply with a light brush or fingers when you’re feeling too poorly for a full face but in need of a pick me up. The more colour & shimmer the more awake you look;) Obviously wearing makeup when you’re sick and in bed all day is not a necessity but on those days you’ve got no choice but to go to a special event or face the real world & you cannot get away with being naked, Afro hair out,stained oversized T-shirt’s. This could help.

LEAVE YOUR MAKEUP REMOVER NEXT TO YOUR BED: This isn’t just for removing makeup, although it’s a good idea to keep it next to your bed as I know I should remove my makeup but I rarely do. The walk to my drawers (about 1 metre from my bed LOL) isn’t worth it. Sometimes it’s nice just to wipe your face with a cotton pad and some makeup remover for a little refresh.

The best. No question about it. Doesn’t sting anything, gets everything off quickly and properly.

-CHAIR WITH FEET UP, To get you out of bed but still comfy, try to invest in a chair with feet, reclining, a foot stall, fairly comfy or frankly anything that lies more flat with a supportive back. ( explore facebook marketplace for those with less money —- I’m addicted—- ) I do beauty therapy treatments so luckily I have a super comfy massage couch which works great as I can lower it to get onto it if I’m feeling wobbly. Perhaps a chaise lounge or arm chair could be an idea for you.

– WET WIPES: let’s face it, showering isn’t always an option when you’re chronically ill! I used to shower 2,3 times a day, now… ew. Remember to preserve your spoons & if it means showering isn’t an option then wet wipes and soap it shall be! Gross but better than stinky and makes you feel a little better if you’ve spent days in bed.

– SCRUNCHIES & HEADBAND: literally make your hoodie and joggers outfit go from a 2 to a 7. Makes any greasy hairstyle look like you’ve actually tried a little and detracts from the fact you haven’t washed your hair all week and you’ve got sick, crumbs of food and fluff from your blankets in it. Oh also!! Curly hair girls scrunchies are so much easier to get out than those cheap hairbands where elastic rips your hair into a gazillion pieces or simply goes missing in your mop!

Bright yellow hair accessory to detract from the fact I have a straw in my beer.
I’m a sucker for a headband. (notice my hair almost being in dreadlocks here).

– MIRROR: Keep a mirror above or next to your bed. Save energy (sometimes sitting up to get ready and feeling like you’re going to faint Isnt really worth putting makeup on)

Rest up x