I haven’t written for a while as I’ve been pretty busy! But also struggling with fatigue! Well what with limited energy, PIP tribunals, PA interviews & diagnosis drama, I’m not too surprised. I sometimes underestimate how much I actually have on my plate right now!
I thought I’d do a quick little update on my life as constantly explaining myself can be super draining!
I’m just so confused! It’s such a long process!
There isn’t really too much to say here other than the fact my doctors think there’s more going on than they initially spotted!
I may have been misdiagnosed & my consultants are pretty worried about some of my symptoms being related to alternative diagnosis’!
SO BASICALLY NO ONES GOT A BLOOMIN’ CLUE WHAT’S GOING ON BUT SOMETHINGS NOT RIGHT!
I’ve been referred to all the top dogs to see specialists for what feels like everything in the world! Today, my consultant told me I have ‘an extensive, impressive repertoire of illnesses’. Whoop tee do, I’m so proud?! Fingers Crossed this list shortens with time.
I’ve moved house in Brighton & I love it. I’m living with a mixture of 3 boys and 3 girls. I love them. It’s really good for me to be able to socialise at home in a big house, as on days I feel too unwell or unable to get out, I don’t become socially isolated!
In my Consultants words- I’m ‘not allowed’ to go back to studying at Uni this year which sucks but I also totally understand. Ofcourse the decision is in my hands but I don’t want to go against medical advice and make myself more poorly.
He said something the along the lines of- ‘you’re too poorly, don’t go back are you crazy?’ He was basically saying if I tried to go back to uni whilst still being poorly it’s unlikely I’d manage and I’d therefore be more discouraged & less likely to continue on in the future, if I am well enough to do so years down the line.
It is such a pain in the bum that I can’t live the life of a normal 20 year old but I won’t feel sorry for myself & I’m definitely making the most of it: having a few cocktails, then going home on my mobility scooter is always fun anyway!
I didn’t realise how much I was struggling before they started! THEY ARE BOTH SO LOVELY! I have two fabulous new PA’s (I feel too fancy saying that, but I guess it makes me feel better about being a 20 year old who requires carers!) They are genuinely improving my life so much & taking so many small stresses off my shoulders. I’m going to be doing some more in-depth bits and pieces on what my carers do, how I employ them etc etc soon!!!
Oh gosh. I’m at tribunal stage currently. I’ve been awarded some of PIP. My mum has been my absolute rock sorting this for me! I’ll talk more on this when I have the spoons. Three points to take away: It’s a joke like SERIOUSLY, I’m too exhausted to do it alone, It’s a joke x2! X
I’m having Tic Therapy at the moment which is exposure response therapy for my tics and it seems to be going really well right now! Patricia (my tics) seem to be a lot calmer although I still have tic attacks and feel pretty exhausted but it’s still early days and they do feel more controlled! I’ll keep everyone updated here.
I’ve got tonnnnnesssss of blog posts planned both here and with Access Your Life as well as some Instagram features & Little Poorly Brighton stuff. I’m also super excited to do more with my new position as a Global Brand Leader for Invisi Youth! Funnily to do all these amazing things as a disabled person who functions on a minimum of 14 hours sleep a day, it can be quite challenging! Give me time and hopefully I’ll have brain dumped properly and I’ll be a little more with it!
Sorry for the ramble & I hope it didn’t come across too boring! I just wanted to do a little update!
Take care of yourself and tell someone you love them today!
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.
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.
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.
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.
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!
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.
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 greatfor 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!
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.
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!
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.
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:
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.