Category Archives: Fibromyalgia

Tenura Daily Living aids.

If you follow my instagram account you’ll know I have become a little obsessed with daily living aids. These are products with a variety of purposes designed to make life tasks easier, particularly for disabled and elderly people. I am regularly reviewing products with ‘Tourettesy Videos’ for pure honesty over on my Instagram.

I was kindly sent some products to try from Tenura UK. They are a daily living aid manufacturer with an aim to improve quality of life in independent living.

These products are described as ‘long lasting, non- slip and chemical/ latex free’. They offer VAT exemption on lots of products for disabled people and their customer care is impeccable. I have been throroughly impressed by both their high quality and friendly service. As always I give honest reviews and speak about the pros and cons to each product truthfully. I genuinely believe these products to be extremely useful for different people. Not only are they available individually to buy lots of them are also available in bulk too.

Many of the Tenura products are sold in three colours each with a specific aim. I love this idea. Below is a link to a more in depth description, however in brief, yellow is for low lighting, red commands attention and blue is calming.

https://www.tenura.co.uk/highlight-objects-and-hazards-with-tenura

The First Product I received was this silicone non- slip circular coaster- I actually found it worked a lot better under plates than it did for mugs. I’m the clumsiest ever so still managed to knock this about with a mug on however with the plate/ bowl it did not budge which was great. The silicone is very thick and it’s quality is evident upon appearance. I love that its got little patterns indented into it.

Circular Yellow Coaster

https://www.tenura.co.uk/tenura-silicone-rubber-anti-slip-circular-coaster – Link to buy an anti- slip coaster.

WHAT IS IT? (taken from Tenura’s website as I couldn’t have explained their products any better!!!)

  • Creates a strong non slip surface, perfect for resting cups, plates and bowls on to prevent unwanted movement
  • Anti-microbial construction preventing bacteria from harboring on its surface
  • Available in 14cm and 19cm diameter, with a material thickness of 1.5mm

This coaster has many purposes and is made of non toxic silicone material which I think could be great in care homes or on hospital wards as well as in the home. I found they worked best with bowls on or underneath a plate or cup on a tray. There are plenty of ways these could be used! It worked nicely on a tray as well as under my food processor. It is also dishwasher safe.

WHAT DOES IT DO? (taken from Tenura’s website as I couldn’t have explained their products any better!!!)

  • Prevents plates, bowls and crockery from sliding on tables, counters and trays
  • Holds chopping boards in position
  • Holds kitchen appliances and mixing bowls in place
  • Holds objects firm on surfaces that are not horizontal and / or are subject to motion or tipping.

These coasters come in different sizes in addition to the three colours- the one I have was yellow and a medium size for £3.83.

Another product I tried from Tenura was the ‘Cup Caps’ as I felt they were very fitting for me (someone who spills drinks all the time!)

Tenura CupCaps (pack of 2)

I love these!!! I’m forever spilling my drink down myself, leaving cups on the side for hours on end and having hundreds of drinks on the go at once. These are a really great solution to avoid spills and ensure freshness of drinks. (Let’s be realistic- leaving your drink out uncovered is a little gross!)

The application of this product is incredibly easy and they’re a super flexible material. Remember to ensure the glass is dry and these slip on and suction to the cup very well.

https://www.tenura.co.uk/cupcaps – A link to buy a pack of two.

WHAT DOES IT DO? (taken from Tenura’s website as I couldn’t have explained their products any better!!!)

  • Seals cups, mugs and cans preventing spills and stains
  • Keeps drinks fresher for longer
  • Can be applied with ease
  • Made with a strong anti-microbial construction preventing bacteria from harbouring on the material
  • Each pack contains 6cm and 8cm diameter CupCaps

They honestly feel like magic! I tipped my cup upside down and gave it a big shake and there wasn’t even a drip of spillage.

I think these would be perfect for young children or parents of children as well as disabled people with weak grip and their carers as they will help to avoid spillages. They are antimicrobial and can be kept in the fridge which is cool. (Pardon the pun!)

They are £10.00 for two which is really reasonable and they stretch to fit most cups or glasses- they don’t spill if knocked over or tipped upside down!!!

I have done a short video on my Instagram @aticcersguidetolife highlights in ‘reviews 2’ if you would like to see them working. You can pop any straw through these and you’re good to go.

The next product was my favourite of the bunch! Simple yet super effective.

Anti- Slip Circles

LOVE! These can be used on wet floor, showers, patios and baths, they are anti- slip stickers which have a rough grip surface on one side and a non marking sticker on the other. To test these out I stuck them on half the floor of my shower and at one end of my bath- within a day I had slipped on the side without the grips and realised how good they were. I now have these in both my bath and my shower all over and they’re great. They ‘take the edge off’ the slip if that makes sense- add a subtle grip. I would say put these a little closer together than you think and you’ll realise just how useful they are! They grip really easily sticking to the surface and don’t mark when removed. They are very easy to apply, and Tenura say they’re much more efficient than bath mats, which can attract mould. I also agree I would choose these over a bath mat as they have feel more hygienic and less clunky whilst seeming to have more grip in addition to being non abrasive.

https://www.tenura.co.uk/tenura-aqua-safe-anti-slip-bath-and-shower

WHAT DO THEY DO? (taken from Tenura’s website as I couldn’t have explained their products any better!!!)

  • Helps to prevent slips and falls in dry and wet conditions
  • Made from a strong non abrasive material which is very kind to bare skin
  • Creates a strong bond with a application surface thanks to its strong self adhesive backing
  • Available in rolls consisting of approx 30 (200mmx20mm) strips or 72 (40mm diameter) circles

THOUGHTS ON THEIR APPEARANCE:

The stickers are designed to prevent slipping and blend into the bath or shower and they definitely do just that. They apply well, without looking out of place. This was something my mum was super conscious of as we have just had her bathrooms done and she didn’t want them being ruined;). It’s safe to say she likes them too as they stick to her modern bathroom aesthetic! They are available in both white and transparent.

These are £7.20 for a roll and the roll is huge it would last ages with replaceable stickers or for multiple areas.

I did a quick video on my Instagram highlights ‘Reviews 2’ of the application of these in both my bath and shower. Ensure you clean the surface before applying the stickers and dry it well.

The next product is another from their silicone anti toxic range. It is super useful for opening jars and I think the smaller one would be really great to keep in a handbag for bottles and lip sticks!

Silicone Jar Opener

https://www.tenura.co.uk/tenura-kitchen-pack – To buy these.

WHAT IS IT? (taken from Tenura’s website as I couldn’t have explained their products any better!!!)

  • Makes jars and other containers much easier to open relieving strain on wrists, muscles and joints.
  • 12cm diameter
  • The Tenura rubber jar opener is non-toxic due to their silicone rubber construction, which means they can be used in kitchens and clinical areas. 

They could definitely be used to open other items as well as jars and could be very suitable for a person with arthritis or little use of the wrist. The non- slip not only helps open the jar but also helps aid avoiding breakages or spillages due to over forcing the jar open. Due to the non-toxic development I also think they could be great to hold things such as potatoes or apples still when cutting!

HOW DO I USE THEM?

These are super easy to use, either put on top of the jar on in your palm and simply use them same way you would normally open a jar. It really helps to ease strain and pain in the wrist and avoids over extension which is great for hyper-mobile patients.

These are just £4 and again this is super reasonable for the quality of product.

Again there is another short video demonstration on my Instagram @aticcersguidetolife highlights ‘reviews 2’.

Overall I was thoroughly impressed by the quality and care that has gone into the Tenura products- I think each product has its strengths for both able bodied people and people with a variety of disabilities. I look forward to trying more!

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:

FIBROMYALGIA AWARENESS MONTH

This is my first post for many chronic illness awareness posts in May!

Fibromyalgia awareness day is on the 12th May, join millions of people all over the world who will be helping to raise awareness throughout May.

FIBOMY WHAAAATTT??? FIBROMYALGIA, pronounced, ‘FI BRO MY AL JAR’ , is a long-term (chronic) condition. It causes sensitivity to touch, increased pain levels in muscles and bones, (musculoskeletal Pain), tenderness, fatigue and cognitive disturbances.

MEANING:

Fibro = Fibrous Tissues (tendons & ligaments)

My = Muscle

Algia = Pain

In patients with fibromyalgia, it is thought that the bodies pain receptors in someone with fibromyalgia are exceptionally sensitive- fibro has links to issues with the central nervous system ‘related to abnormal levels of certain chemicals in the brain and changes in the way the central nervous system (the brain, spinal cord and nerves) processes pain messages carried around the body.’ – NHS People with fibro have increased pain sensitivity.

In autoimmune diseases, such as Rheumatoid arthritis, the body attacks its own tissues with proteins called autoantibodies, in the same way it would normally attack viruses or bacterial infections, the immune system instead attacks the healthy tissues. There are thoughts amongst scientists whether fibromyalgia could be an autoimmune disease but this is not confirmed. Rheumatologists are usually the people to diagnose Fibromyalgia, as they have to rule out other illnesses. Sometimes people go being misdiagnosed for a long time as their symptoms mimic other illnesses and vice versa.

Fibro is seven times more likely to occur in women than men although the reason for this is unknown. It is a common condition that usually occurs aged 30-50. I was considered young to be diagnosed just before I turned 17, I have interestingly only met one man with fibromyalgia but many many women.

Sadly fibromyalgia is not very well understood, with time we are learning more. I have done a post on fibro previously but I thought- since it is awareness month, it may be useful to share some more. There is sadly no cure for fibro although we are hopeful with improvements in scientific research, we may eventually have more treatment options, it’s cause is unknown although there are many correlations with people with fibro & previous injuries, illnesses, trauma and stress.

In many cases, the condition appears to be triggered by a physically or emotionally stressful event, such as:
* an injury or infection
* giving birth
* having an operation
* the breakdown of a relationship
* the death of a loved one
– NHS UK

MY FIBRO STORY:

I broke my coccyx in 2017 when working, I slipped on wet floor, and knocked myself out. My initial worries when I came back round, were the pains from my head, an intense ache, it wasn’t until I got home that I realised I couldn’t walk without agonising pain. At times the pain was so bad I would find myself doubled over in pain, nauseous and faint. Time was the only treatment that was feasible for me to heal the damaged bone, there wasn’t much treatment to offer to heal the broken bone due to the position of it (being in-between my bottom & my back!) With strengthening exercises, it has healed to some extent with time and the muscles around it are slowly more responsive, (although it isn’t quite right and we suspect it could’ve healed in the wrong position slightly.)

Now… as someone with a beighton score of 7- I am very hypermobile. I used to be able to get myself into all sorts of positions due to hyper-flexibility in my hips. In the early months post accident, I had no movement in my hips or lower back at all. This is unheard of for me. From the fall, I experienced bowel & urine incontinence, hip impingement, intense nerve pains & numbness. Embarrassing. Scary. Painful. I still suffer many symptoms and struggle to sit or stand for long periods. Medical professionals believe this to have been what triggered my Fibromyalgia. ‘A traumatic event or injury’ It took me nearly two years to gain sensation in my buttocks. I couldn’t squeeze any muscles in that area at all- it was scary and embarrassing. (I CAN NOW HOLD FOR 8 SECONDS BEFORE MY BODY ‘SHOUTS AT ME’! Baby steps- this is an amazing improvement.)

I describe the pain as- if you were to stub your toe really hard on the corner of the bed and it takes your breath away, times this by 3 and you’re about there. It makes so much sense to the way my body responds to pains. I pull muscles and they ache like anybody elses’ would but the rest of my body will go into an intense meltdown from this. I cry like anyone else if I stub my toe, my hips lock or i trap my finger in the door. On days I am in a flare my skin burns- if you were to give me a hug, the pain can make me feel physically sick. If someone were to bump into me gently in the streets when I am experiencing pain it can make my body spasm and I cry. This is one element of fibro.

So, I was initially diagnosed with coccydynia- meaning coccyx pain;) I was then diagnosed a few months later with Fibromyalgia and hypersomnia. This made sense. It affected my ability to study my A levels massively! I was on the up from recovering from mental health issues and this set me back emotionally! Since breaking my coccyx, pain started in my coccyx, spread down to my hips, sciatica, knees, shins, ankles and up to my lower back shoulders, lymph nodes, arms, nerves in my forearms, jaw etc…I had always suffered back pain due to having large boobies;) This pain was different- it felt deeper inside my nerves and less like a strength issue from pressure from the weight of my breasts. I’m fortunate in the fact I find my fibro symptoms to be mainly under control now although I do have flares every two weeks or so. Infections & illness are likely to make all symptoms flare or worse. Doing to much or too little can cause issues! I will save this discussion for my post for Myalgic Encephalitis awareness month!

Diagnostic criteria

COMMON TRIGGER POINTS OF PAIN INCLUDE; back of the head, tops of the shoulders, upper chest, hips, knees, outer elbows.

Fibromyalgia is often referred to as an invisible illness or the irritable everything syndrome. People with fibro may struggle to come to terms with the reality of their condition, feel that they are letting everyone down. It is important to have a good support network to talk about feelings and recognise emotion changes due to your physical symptoms.

Pain fluctuates & an increase in pain symptoms are called a flare up or ‘fibro flare’ various physical, environmental, emotional factors affect ‘flare up’ symptoms. Flare ups of pain can be incredibly frustrating & happen when you do too much or too little. We may be doing all the right things and suddenly the pain will increase! Fibromyalgia is about finding the right balance and sometimes household tasks can be exceptionally difficult!

BRAIN FOG IS REAL!!!

“Fibro fog” or “brain fog” – is a term some people use to describe cognitive issues associated with fibromyalgia.

  • memory lapses
  • difficulty concentrating
  • trouble staying alert

I often find myself in a daze, not listening, concentrating or ‘day- dreaming’. Sometimes I can have long in-depth conversations with people and not remember what we spoke about, what, they said/ I said or why I said it. I find myself losing everything!!!! Reading things and not taking it in. watching things and not listening/ understanding. Forgetting simple things and being away with the fairies. As someone with OCD and who was once exceptionally organised, I find this to be the most difficult fibro symptom.

I hope through my ‘aticcersguidetolife’ accounts I can speak about my conditions in a positive way, network other young disabled people and raise awareness.

If you would like to find out more about fibromyalgia including flare ups, trigger points, fibro fog etc… I have done a more in-depth post here:

https://aticcersguidetolife.com/2019/11/15/a-pain-in-the-arse-literally/

Fibromyalgia Action UK is an amazing charity that offers information and support to people with fibromyalgia and their families. There are many support networks for people with fibro including Facebook groups, smaller local groups funded through FAUK & social media. Don’t suffer alone. People with fibromyalgia can often feel isolated and struggle with mood disorders and mental health issues due to the uncertainty and grief of living with chronic pain.