Tag Archives: HEALTH

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

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:

M.E AWARENESS MONTH

Myalgic Encephalomyelitis – Chronic Fatigue Syndrome.

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?!

MEACTION UK provide incredible fact sheets such as the one above.

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.