2019 goals and missions and my word for the year

So I'm not one for setting New Year's resolutions but there's some things that I would like to do more of and set myself to do next year:

• Do my nails and make-up more often plus dress-up more

• Keep up with my 'One Second Every Day' project (and remember to do it each day!)

• Continue working on and growing my blog

• Remember to put image descriptions on my blog and on my blog's social media accounts.

• Grow my YouTube channel and improve my video making skills

• Write reviews for Euan's Guide (online accessible places trip advisor)

• Make it my mission to improve the accessibility of red cords using the red cord cards I've ordered fro Euan's Guide

• Get into a better day and sleep routine

• Remember to take all of my tablets correctly and on time

• Get better at doing my physio exercises/stretches and 'Yoga for M.E.'

• Keep my bedroom tidy and tidy up after myself (even if it requires a nap/breaks)

• Keep up with my Warrior Beads project

• Get back into my Bravery Bottles project

• Look into going on a holiday with Revitalise (accessible holidays for people with disabilities)

• Make Instagram stories and create highlights to document my year

• Get better at sending out birthday cards

• Keep on top of my emails!

There's more I'll probability add and develop as the year goes on.
2018 was also the year of 'gratitude' I pic a word to try and live by each year. i've been thinking a lot about what my next word will be and lately I've been feeling stuck and low which my health and funding for various things going no happening so I think my word for 2019 might be 'hope'.

Twinkle Twinkle All Te Way: December 2018 Birchbox Review

 

"Twinkle All The Way"

This month's Birchbox was filled with a few extra treats.

 LARITZY Cosmetics Long Lasting Liquid Lipstick in 'Tidal' which is a lovely dark rosy pink colour.

 

Percy & Reed 'Totally Hydrating TLC Mask'
A moisturising hair mask. I've received other Percy & Reed products from Birchbox and received good results so I'm popping this away to use in a little self-care paper session.

Oh K! Bubble Sheet Mask
"This innovative sheet mask reacts with the oxygen in the air to form tiny bubbles when you place it on your face. Not only does it result in a hilariously foamy face but it purifies and smooths skin for a radiant complexion"
This sound quite a fun product to use and I'm looking forward to trying it out.

Rituals - The Ritual of Ayurveda Body Cream
I LOVE Rituals products, they just smell amazing. I've tried theirs other product ranges but I've not used this product range before but I'm sure it will leave my skin smelling lovely.

Benefit 'Chachatint'
'Mango-tinted lip and cheek stain. I already have this product from another Birchbox and love the colour. A little goes a long way so it lasts ages.

Birchbox hair comb. Something I've been needing but not yet gotten round to buying so thanks Birchbox!

I'm really looking forward to seeing what next year's Birchbox's will include. 
My cosmetics/toiletries stash is already quite extensive already but it's nice to have a selection and save products to use and have a little self-care TLC pamper session.

YouTube Video: Aids and adaptations I use [CC]

Second video up on my YouTube channel. This one is about some of the aids and adaptations that I use.
I've not been sponsored by any of the companies that I've featured but I'll put links below to some of the gadgets I use if you're interested in purchasing them yourself.

• Tabtime Super 8

• Safe Sip

• VibraLite Mini watch

• Dycem jar and bottle opener

• Spill-Not jar and bottle holder

• Medic alert bracelet 

• Crutches: 'Switch Sticks'

Link to my YouTub channel can be found by clicking here.

International Day for People with Disabilities 2018

Today is the International Day for People with Disabilities.

I think so often when you have a disability you're faced with so many different barriers. 
I can't work, go to University, access certain places because it doesn't have the access I need like ramps or the aisles are to narrow, I can't get nearly parking or a space reserved for blue badge holders (and the misuse of these spaces). The list could go on.

I'm also faced with personal barriers in terms of the unpredictable and relentless symptoms that I face each day as well as access to care and support. Today I found out that I can't access the specialist falls clinic because I'm too young; they only take referrals to people over the age of 65. It's like I'm being told I'm young to have falls yet today I've fallen twice and once yesterday. I've also been fighting for funding for a care package (carers) for years and the care agency I employ privately have openly said that if I was older my case would be dealt with differently and many people involved in my care from my care agency to community nurses all say I need more care. There are also barriers to specialist care; I'm currently waiting and asking to be referred to a specialist M.E. team but we don't have one locally; for a while I've wanted and feel I'd benefit from hydrotherapy but again this is not something our local hospital trust has (though hopefully when I attend UCLH's hypermobility team's exercise programme I can get some hydrotherapy sessions but it would require a 6hr drive to get there but I feel lucky to be under their care). I've also been waiting over a year now for specialist funding for a place in neuro rehab in Leeds and I'm in the middle of everyone passing the responsibility onto someone else to get the funding requested.

There are also the financial barriers to having a disability - See Scope's 'Extra costs: The financial penalty of disability'. Yes you get a disability allowance (PIP or Personal Independence Payments) but it doesn't stretch as far as you think. Out of that come things like extra food money because I have to buy specialist free from foods because of allergies and intolerances, I go through extra laundry costs because of my incontinence, I have the cost to pay carers and if I could afford it I'd pay for more care than what I'm currently getting because its not enough and often I have to choose between leaving the house or get a wash and that shouldn't be the case, there's also cost of adaptive equipment that the NHS or social care don't provide and clothing  and in winter the higher energy bills because you I need the heating on more because the cold makes my symptoms worse, or there's the cost of taxi's because I can't drive or use public transport. "On average disabled people face extra costs of £570 a month related to their impairment or condition".

There are social barriers. I'm mostly housebound so I don't get out much as I'd like to such as to be able to go to groups or see friends as often as I'd like. Letter writing is my way of connecting with the world outside. 

I think a large part of the barriers I face is the invisibleness of my disability/illnesses. When you see me in my wheelchair or with my crutches you can see the wheelchair or the crutches but you don't see what's going on underneath and you don't see the unpredictable nature of my disability. One minute I can be fine; the next I'm unconscious having a seizure or double bent pain. You don't see that I struggle with my cognitive function or washing my hair or the energy it takes to simply get dressed each day.

So what can be done to breakdown these barriers? Make buildings more accessible and for staff to be trained in supporting people with disbailties, produce information in alternative formats easier to obtain, support disabled people to access the care and support they need regardless of where they live or their age and less of the 'postcode lottery' when it comes to health and social care, for the public to be more aware of the barriers faced by people with disabilities, such as by not abusing disabled parking spaces and to see beyond the visibility of a person's disability/illness, for red cords in disable toilets not to be tied up (!) and for laws and legislations to be changed and made. (The list could go on!)

Despite the many barriers I and many other people with disability face I will not let it stop me or define me. I must simply fight on. There is more to me than my disability.

Nutcracker: November 2018 Birchbox Review

This month's Birchbox's theme was based on Disney's 'The Nutcracker and the Four Relms'.

Inside was...

• A Spacemasks self-heating eye mask which is infused with jasmine. It was very relaxing and the heat really helped and its something I have already added into my shopping bag to buy and they would also make great gifts. (Full size - RRP £3.50)

• A Manna Kadar cosmetics Dimond just Roller Eyeshadow in shade Pixie. Its really easy to apply, it can either go on as a solid colour which is like a super glittery pale pink or it can be blended with a brush to add shimmer over your eyeshadow. It can also be used as a highlighter or to add glitter to your lips. A little goes a long way so I can see this lasting quite a while. (Full size - RRP £15) 

• A Paul & Joe foundation primer. I've not tried this out yet. (sample size)

• A Polaar night cream, again not something I've used yet. (sample size)

• A Beauty BLVD Hydra-Gel eye masks - two supplied. I've not used these yet either but I'm looking forward to trying them out. (full size - RRP £8.50)

 

October is Dysautonomia Awareness Month

So what is dysautonomia?

Dysautonomia refers to a disorder in or with the autonomic nervous system. This is responsible for things like heart rate, blood pressure, digestion, kidney function, temperature control and more, basically all the bodily functions that occur without having to consciously things about it and it affects every part of the body.

People living with various forms of dysautonomia have trouble regulating these systems, which can result in lightheadedness, fainting, unstable blood pressure, and abnormal heart rates. 

“Dysautonomia is not rare. Over 70 million people worldwide live with various forms of dysautonomia. People of any age, gender or race can be impacted. There is no cure for any form of dysautonomia at this time but there is research bing done." - Dysautonomia International

There are several illnesses that are caused by dysautonomia. I don't have any particular dysautonomia disorder but I am affected by dysautonomia due to my M.E. and HSD. I have a low blood pressure and faulty heart rate which leads to dizziness, light headedness and fainting. I also struggle with temperature control, especially feeling cold all the time and finding it difficult to warm up and my digestive system is slowed down too. 

Although there is no cure there are things that can be done to help manage my dysautonomia I take electrolyte supplements, and I've had to get over my dislike of salt and increase my salt intake and eat smaller meals. The idea behind smaller meals is that the you have a big meal all the blood goes to the digestive system leaving less blood for the rest of the body causing symptoms like dizziness and light headedness. Changing my posture too like when I lie down can also help.

October is Dyslexia Awareness Month

So October is Dyslexia Awareness Month. I've had dyslexia all my life, but it took a long time for it to be picked up and diagnosed. I have a very vivid memory of being 4/5years old and struggling with my reading homework which including the word 'what' and I was insistent that the word was pronounced 'w-hat' and my Dad was desperately trying to get me to say 'what'. 

Dyslexia is a form of 'Specific Learning Difficulty' (very different to a 'Learning Disability')

Having dyslexia doesn't mean I'm not intelligent - my brain just works a bit differently and gets a bit more scattered than other people's and I think more in pictures rather than words.
Dyslexia runs in our family - both myself, my brother and my Dad have it.

I always struggled with reading and spelling. I hated being called out to read aloud in class as people would laugh at my reading aloud ability or dis-ability in my case. What I found most frustrating was I was so bright, when it came to writing our work out my head would be buzzing with ideas of what I wanted to say but putting pen to paper was slow and very difficult and I was always pulled up for not finishing my work or for my spelling errors. Despite my intelligence I was in the bottom set for work so some of the other students that where on my table preferred to pick on me rather than do their work so I didn't;t really enjoy school that much.

Finally when my dyslexia was picked up, assessed and diagnosed is was almost like a sigh of relief. I quite beating myself up and my IQ was higher than average but for things like reading and writing speak I scored so low it wasn't on the chart but other things I scored very highly on so I was able to work with my strengths. I also got introduced to assistive technology which has been a lifeline and I got a support worker in class as well as 1:1 teaching sessions to help me with the things I found difficult. I also got special arrangements for examinations.

Some of the assistive technology I use is Dragon which a voice controlled, so I can control my computer with my voice and i can talk and it will type for me. Read and Write Gold which has lots of different features like reading out text, having a more advanced spell checker, a word dictionary, screen overlay, high lighter organiser and many more. I also use Inspiration in which you can mind map out things such as essays, blog posts etc.

Looking back I think I would have done better at education if my dyslexia hod of been picked up sooner but I pleased with myself for how far I did get without the support and knowledge of my dyslexia.

So, what is Dyslexia?

• Dyslexia is one of a family of Specific Learning Difficulties.

• Many people who have dyslexia have strong visual, creative and problem solving skills.

• Dyslexia is not linked to intelligence but can make learning difficult.

• Dyslexia is a life-long condition which has a substantial effect on an individual’s day to day activities and is classed as a disability under the Equality Act 2010.

• Dyslexia varies from person to person and no two people will have the same set of strengths and weaknesses.

• It often co-occurs with related conditions, such as dyspraxia, dyscalculia and attention deficit disorder.

• Dyslexic individuals often have difficulty processing and remembering information.

Source - The Dyslexia Association

 Alongside the dyslexia I also have Scotopic Sensitivity, or Irlens. Some people have this alongside their dyslexia, other can have it without having dyslexia. This was picked up a long time before my dyslexia.
Wearing tinted lenses - originally it was green, then blue and now purple they help to 'unscramble' the words on a page and makes it easier to focus on the text. I also have a colour filer on my laptop, iPad and phone which does the same thing.

"Irlen Syndrome (also referred to at times as Meares-Irlen Syndrome, Scotopic Sensitivity Syndrome, and Visual Stress) is a perceptual processing disorder. It is not an optical problem. It is a problem with the brain’s ability to process visual information." - Irlen 

August Birchbox Review

This month's Birchbox was designed by Etsy seller Nikki Strange. This month's birch box design came as a unique design and there was a chance of receiving 1 of 10 designs made by Etsy sellers and the theme was "Live a life beautiful".

Inside I received...

Eye Shadow Crayon in 'Fetch' by Dirty Little Secrets
This product I got to choose the shade and I've tried this product out and I love it! The shade is beautiful subtle; it's very neutral with a little shimmer. It's very easy to put on as not brushes are needed and it has a lovely creamy texture. Just scribble a bit onto your eyelids and blend in with you finger and off you go! It can also work as a base coat of powder eye shadows and it can also be used as a highlighter so two-in-one - fantastic! And it's lasts all day but it easy to take off at the end of the day. I got this as a full size product and it's a decent size and a little goes a long way so it's going to keep me going for a while. The RRP of this product is £10.50.

CLĒ Cosmetics Melting Lip Powder in Red Cherry
This little sample, tough it may a sample a little goes a long way. It can be used as either a lip colour or a cheek tint and goes on as a lovely matte finish and as a bonus it's smudge proof so is long lasting throughout the day. The RRP of the full size product is £15

Dr Botanicals Pomegranate Regenerating Sleeping Mask
This product I have tried out. Just cleans your face before bed and apply a small out and work into your skin and you wake up with lovely refreshed skin. It smalls amazing too. "The antioxidants [in this product] will rejuvenate tired skin so when you'll wake to a glow, hydrated complexion". The RRP of this product is £14.90

ModelCo®  Eye Define Crayon Liner
This was another full size product which I haven't used yet as I'm wanting to use up my current eye crayon. It's a twist-up crayon, so no need for sharpeners (yay!)  and lasts all day, perfect! The RRP of this product is £11

Bumble and bumble. Don't Blow It Hair Styler
This was a sample size and not one I've used yet but I love Bumble and bumble's other products from previous purchase's and Birchbox's but I'm eager to try it out as I often don't blow dry it's designed for towel-dried hair which isn't going to be blow dried as I often don't bother to blow dry my hair. The product uses "plant based conditioners to enhance you hair's natural texture and shine". The RRP of the full size product is £24.

All products can be bought in full size from the Birchbox Shop and if you wish to subscribe to Birchbox follow this link https://www.birchbox.co.uk/invite/pm6lh to earn £5 to spend in the Birchbox shop and each month new subscribers also receive a free gift. Birchbox costs £12.95 each month including P&P and there are different subscribing options and you can cancel anytime.

Hypermobilty Eduction Session

So yesterday's appointment was a bit different.

Patient Transport arrived to pick me and Dad up. We took a pit stop at Peterborough Services and I had my obligatory Costa along with their mini gluten.dairy free cherry bakewells.

We got there a little late as the crew member diving couldn't find the hospital and I was madly trying to get in touch with literally anyone at UCLH to say we was coming and one our way as the appointment letter said if you arrive late you may be turned away and I desperately didn't want that to happen and have a wasted trip, plus I'd made sure that the appointment was during the summer holidays so Dad could come with me (he's a teacher). 

So once we got to UCLH it was a made run, (well, Dad running pushing me in my wheelchair) from the main UCLH building to the Education Centre. We was a little late but we got in most of the session and the physio who took the session is going to email me the power point.

The session covered things like what is hypermobility, pain, symbols and management of symptoms, nutrition and abdominal symptoms, autonomic issues/symptoms and tips for management, posture and footwear (so no more ballet pumps for me!). It also covered the two treatment pathways following the session which is the COPE Pain Management Programme and the Hypermobility Exercise Programme.

We (Dad and I) had a good chat with the physio afterwards, asking things like what of the two treatment options I should do first (I went for the pain management programme first and then to to the excise programme after so hopefully when I do the exercise programme my pain would get in the way so much). I was also anxious about how the exercise programme would affect me M.E and the physio had some knowledge of M.E. and so reassured me that they would work within my capabilities and not push me to breaking point and would build me up slowly at a pace I can tolerate both in terms of my hypermobility and with my other illnesses.

When the physio covered the slides on autonomic issues - things like heart rate, temperature, dizziness - all pre-seizure symptoms so I'm going to trial some of the advice for managing autonomic symptoms like increasing my salt intake (easier said than done as I really don't like salty food), drink more and have smaller meals as the amount of times I have seizures after meals is rediculous but apparently having smaller meals reduces autonomic symptoms as all the blood isn't rushing to to the digestive system.

So all-in-all it was a very productive and valuable day. The physio wasn't sure how long the wait was for the COPE Pain Management Programme but hopefully it won't be too long and then when I've done that I can be referred for the exercise programme.

I left feeling so lucky to be under UCLH now for my hypermobility after so many years of locally hitting brick walls and no one really listening to me or doing anything to help and support me. I have an amazing team of different specialisties that all specialise in hypermobility related complications and other co-mobidities.

Before heading back to the ambulance we took a quick toilet break then whizzed over to the main UCLH building to grab a coffee and a snack and then we set off home.

I had a few seizures on the way back home, probably because I was so tired but travelling via stretcher now for my London trips is defiantly the way forward and I had a nap and I'm loving my new beats headphones as listening to music/audiobooks defiantly help pass the time on long journeys. 

Gunby Hall - Day out with Dad

So on Monday Dad and I went to visit a National Trust place in Lincolnshire called Gunby Hall. It wasn't actually that far away and only took about 45 minutes in the car which was nice and manageable. 

We arrived around 12.30pm and sat in the courtyard and had our packed lunch. We had nice weather for the day - not too hot but not too cold and no rain.

We got a map of the wheelchair accessible route round the garden and so after lunch we set off round the gardens and there was lots of beautiful flowers in bloom.

We then stopped off at the tea rooms and sat outside and had a coffee and cake.

Next we headed into the house. This wasn't wheelchair accessible so I used my crutches and there where seats dotted around to sit on and rest.

In the first room we entered there was someone playing the piano which was lovely to listen to (see video). We wondered round and unlike most National Trust properties all the items in the house belonged to the house. We wondered round and peered in the various rooms and I enjoyed looked at the titles of the books dotted around on shelves and in the library and also spotting William Morris wallpaper and other wallpaper designs (textile design geek here).

It wasn't 100% wheelchair friendly as most of the paths where gravel and I had to rely upon Dad pushing me. Some of the paths where also a little narrow, but I have a narrow wheelchair so we managed okay there was also some mini steps that where marked as grass ramps on the map but they wasn't any so at times Dad struggled especially with the tip guard being so low on my wheelchair (which needs looking at) but we did manage it. So if you're a wheelchair user I would recommend that you'll need someone with you if you're in a manual chair, it may be easier in an electric wheelchair, but that depends on your chair and I've never used one and you'd need a narrow-ish scooter too to get round some of the path but I'd say it is possible. But all-in-all it was a pleasant wander round and I'd say in terms of accessibility it depends on whether you can walk around as it's not huge and it depends on your wheelchair/scooter.
There was also a church to visit but that wasn't part of the National Trust and we didn't take a visit to that. 
They also go guided tours of the gardens which tells you about the gardens and grounds and the plants there, but we didn't go on one.

It wasn't full day out which was nice as it wasn't too tiring. I was in a some pain from walking round the house but unfortunately due to the nature of of old houses which are often listed buildings which the National Trust look after they are not built for wheelchair accessibility unfortunately which makes it hard when you're like me an enjoy visiting places like the National Trust.

All-in-all it was a lovely afternoon out and somewhere I'd recommend visiting.

Trip out to The Range

So ever since my birthday on the 17th June Dad has been promising me that he'd take me the The Range for coffee and to browse all their craft stuff and finally yesterday (19th July) we went.

I had a few things on my 'to buy' list like water brushes (I actually found watch I was looking for in a cheaper version) for watercolour painting (I got some watercolour pallets from Dad for my birthday) and some sponges for painting and adding texture. I also needed a new messy mat as I'm not sure where mine has got too. I also needed more envelopes, address stickers, glue and clear tape.

Going round I spotted a new collection of craft bits called 'Moroccan Haze' and I haven't done any folded out letter in a while as I ran out of 12"x12" paper so I put some of that in my basket along with some matching supples like stickers, washi tape and ribbon.

Apart from the matching washi tape I refrained from buying any more washi tape as I have loads at the moment. I also bought some stickers but again I restricted myself as I have quite a lot at the moment that I want to use up first. I also found some pearlescent spray paint which I thought would be nice to add a bit of shimmer to my paintings.

I enjoy going to The Range as there's always new things that they're putting on the shelves.
After I shopped myself out Dad and I went to the cafe and got  two coffee's which we drank and I went through my basket and took out what on second thought I didn't need.

I was tired when I got home but pleased with my purchases and I chilled out making a letter for one of my pen pals.

July Birchbox review

So to try and jazz up my blog I thought I show you what's in my monthly Birchbox.

Birchbox is a monthly subscription box where you receive 5 beauty products, from cosmetics to shower stuff to perfume samples. 

I absolutely love my Birchbox and the start of each month when I know my box is on it's way to me. I have a beauty profile with things like my skins and hair type and how adventurous I want to be with my make up so my box is customised to me.

So this month I received a Browcote waterproof brow gel (which is a bit like mascara for your eyebrows), a 'Merci Handy cherie cherry' hand cream which I haven't used yet as I'm still using my Birchbox Cath Kidston hand cream from April, a 'What's in it for me?' shower scrub which smells amazing and I can;t wait to try out, a 'Balance Me' congested skin serum which is great and goes really well with the other Balance Me facial products that I've received in previous Birchbox's and a 'Manna Kadar' multi-use powder which can be used on the cheeks and eyes - this one i got to choose the shade so I went for the shade Blush; I haven't used this one yet as I'm trying to use up what make-up I already have on the go.

Most months you get a chose on one of the products, like todays I received an email asking me what shade of eyeshadow I wanted in next month's box. You also guaranteed to receive at least one full-size product, but often the sample sizes are pretty decent. 

I've been getting my monthly Birchbox for quite a while now and you can cancel anytime and Ive built up a box of products so when I feel in the mood for a pamper I got out my box of Birchbox products. I've also come across products and brands which I love and have go on to buy them in the Birchbox shop.

I'm still perfecting this type of post which I'll aim to do each month so if you want a better review or more information about what I go just leave a comment.

EDS Diagnostic Centre, Sheffield - 18th July 2018

On Monday the Genetic Counsellor called me and we spent almost an hour talking and me being asked questions ready for my appointment on Wednesday. 

Then yesterday I had my appointment with the EDS Diagnostic Centre in Sheffield. I went there as I was referred my my rheumatologist to be tested for a form of Ehlers-Danlos Syndrome known as Vascular Ehlers-Danlos Syndrome (vEDS). Fact: there are 13 subtypes of EDS.

The journey went well and we arrived in plenty of time and thankfully with Sheffield only being a couple of hours away I didn't need to be up mega early like I do for my appointments in London.

Whilst I was in the waiting room a lady came out to me to ask me some questions like my height and weight and consent for pictures to be taken if needed and also to share my information for research and teaching - I'm all for research and education so I was very happy to consent.

At 2pm I went into my appointment with the Dr and Genetic Counsellor and the Dr asked me some further questions in addition to the questions the Genetic Counsellor asked me over the phone. 

The Dr then did a physical exam looking at my joints and also my veins to look at my how hypermobile I was and also to look for features of vEDS such as bruising, prominent veins and particular facial features.
EDS is a genetic disorder and vEDS can be diagnosed through a genetic test so a sample of blood was taken and when the results are in the Genetic Counsellor will contact me. Hopefully the results will come back clear as vEDS is quite a serious condition to have.

The journey home was also pretty straight forward apart form having a spasm attack down the motor way which was a bit painful as they usually are but being laid on the stretcher was much more comfortable than if I was sitting in my wheelchair.

Personal views below:

During my consultation I brought up about the unbalanced way EDS, especially hEDS (Hypermobile Ehlers-Danlos Syndrome) is being diagnosed and how some people are diagnosed by their GP who have very little knowledge of EDS and then there's others like myself who go through appointment after appointment with specialists to be assessed for EDS and the Dr totally agreed with me and said that she believes that GP's shouldn't be diagnosing conditions like hEDS as they simply aren't equipped with the proper knowledge to diagnose such a condition. 

We went on to discuss how this unbalanced way of diagnosing means that there's people who have been diagnosed by say their GP (especially if you go to your GP and say "look I'm hypermobile, and I've looked it up and I think I have hEDS?") as there's a lot more out there now about EDS which is great but it's leading to people I believe being misdiagnosed or maybe even self-diagnosing (as you can be hypermobile but not have hEDS or HSD (Hypermobility Spectrum Disorder) for instance athlete, dancers and gymnasts) who probably, if they saw a specialist like I have wouldn't actually meet the new criteria for hEDS/HSD. In addition to this, being misdiagnosed with an illness, any illness, can lead to the person taking medications they don't need and other treatments like braces and splints which if they don't really need it will lead to muscle weakness and wastage. Plus it takes a huge toll on the NHS.

GP's need more knowledge and shouldn't;t be diagnosing rare illness, instead they should be referring to specialist for assessment rather and doing the easy (and maybe cheaper thing for the NHS) and diagnosing themselves.But also now under the new classification there are people living with the old EDS Type 3 (Hypermobile Type) who now under the new classification wouldn't meet the new criteria for hEDS/hypermobile Ehlers-Danlos Syndrome, which again the Dr agreed with me on that.

And having HSD doesn't mean that you're suffering less than those with hEDS. Personally I've noticed recently that it seems to be the 'in thing' to be diagnosed with hEDS? You don't need the label; we are more than out illnesses. 

Information on: Hypermobile EDS and Hypermobile Spectrum Disorder

Video Telemetry

 So I thought I'd do a blog post about video telemetry's and EEG's after my recent hospital stay. I did plan to write this whilst in hospital but I didn't get round to it and its a bit delayed as my recovery from being hospital has been slow and I've had a lot to deal with.

A video telemetery is a EEG which is also video taped and sometimes there's also a microphone too.

An EEG is a 'electroencephalogram'. Tiny metal discs are glued to the scalp and forehead; around 24 discs are applied. I also have two on my arms to record my heart rate and muscle activity due to my myoclonic seizures in my right arm.

In the video telemetry I was more-or-less constantly hooked up to the machine that and there is a camera above me. I had a little bag which all the wires on my head was pegged into and then from that box (pictured) there was a wired connected to a monitor which displayed the EEG readings. Each time I have any kind of seizure activity I have to press a button (pictured) that is almost like a bookmark on the recording and it also alerts the staff in the nurses bay so they could come an check up on me. I/the staff also had to keep a written record of my seizure activity. For the most part I was glued to my bed and the machine but I could have 15 minutes off the machine to allow me to say use the bathroom.

Each day the clinical neurophysiologist came to renew the tape and make sure the metal discs where all still intact and ask how I was getting on ask what seizure activity I'd had.

The purpose of scalp telemetry is to record on EEG (electroencephalogram) any spontaneous electrical activity of the brain. At the same time it aims to record any physical movements and sounds that may occur during your usual attacks, episodes or seizures. A wall mounted video camera; microphone and the EEG cabling are set up at the telemetry bed. We aim to record three or more of your usual attacks, episodes or seizures. The purpose of recording both the EEG and video is to establish if any electrical changes occur in the brain prior to or during any physical symptoms you may experience. The telemetry test can be helpful in:

• Confirming a diagnosis of epilepsy or other conditions such as sleep and movement disorders.

• Establish the epilepsy focus as part of the epilepsy surgery assessment process.

• Recording exactly what occurs during the attack, episode or seizure.

The purpose of my 5 day admission for the video telemetry was to try and record as much seizure activity as possible both on the EEG and on the video and microphone to work out what is causing my seizures so my Professor can make a plan in terms of treatment and moving forwards with my care.

Once all the data has been collected it will then be reviewed and analysed and a report will be sent to my Professor.

I get the results of my video telemetry next week when I see Professor Edwards. I'm feeling quite anxious about the results and the knock-on effects of those results, such as prognosis. But I keep trying to stay in the moment and just hold out until my appointment on the 3rd July.

Guest post by Elise for EDS/HSD Awareness Month

"Room for two?" An older man asked me as I passed him. It took me a moment to register what he said, just coming out of the zone I'd been in, before replying the not-so-snappy come-back, "afraid it only takes one". He had seen me in my powerchair, as people do, and made a friendly comment. 

I was flattered to be asked by Naomi to write for her blog. The lack of predictability with illness means my piece here is late, but for Ehlers-Danlos Awareness Month I thought it might be a nice change of pace to write about my feelings on other's perception of me. Posts this time of year tend to range from, "inspirational zebra" to "look at me bend", to "let me give you a biology lesson, collagen style". It's all very productive but it never addresses the more personal aspects of living with Ehlers-Danlos Syndrome (EDS). So let me put in on a platter for you, simply as a person who's dealing with being built differently. Collagen-style.

Recently I've started getting out on my own, & I've noticed different attitudes around me - in fact, more positive when I'm lonesome. When I'm with my mother, my carer, I'm not treated as though I'm mentally capable of answering questions about myself - when it's obvious that I am. As she gets hit with questions in regards to my prognosis, my diagnosis, if the wheelchair is permanent - it's the failed effort to not be confronted with the subject herself that seems most offensive. It's often when I've wheeled myself off out of ear range that these questions come. It's hard to know how to react when your body is achknowledged above your present state of being. At moments like this, it is not our duty to raise awareness or give away personal information - it's our right to maintain dignity and privacy, that comes into play.

When I'm on my own - when I look closer to a "normal", or capable, teenager - it's a different story. It's always a struggle, but I have yet to face those questions in that scenario - additionally, people are more direct and more receptive to the prescence of someone who may need a hand. I get people making comments a lot - like the man I mentioned before, predictably usually about them hitching a ride or a driver's joke (“got a license?"). But I lose my voice when I'm seen to be cared for by another, and I'm treated like a tradgedy and a burden no matter what. The real tradgedy isn't the wheelchair, but it's the assumption that because of my illness I'm not living my best life. With nothing to blame for it but chance and luck, this is the hand I've been given. I am living my best life because this was the direction it took me, and like most I'm working with what I have while figuring out what I want. But what frustrates me more than anything I can't change, is the things that should change - and I believe awareness is the first step forward (or wheel - whatever your form of travel) to rectify that. 

If I had control of the country for a day, I would smatter the nation with ramps, lifts and dropped curbs. Going deeper into the issue, I would make access a priority in architecture and businesses. Work environments would receive funding for disabled employees and schools would bring disability into education. I would delete every piece of obvious "inspiration porn" (see below)* and replace it tenfold with representation in mainstream media. I would make it mandatory for any new houses built to have options for future adaptions - in the likelihood that the inhabitants became disabled themselves. Of course I would put every effort in to save the NHS - which is this country's biggest redeeming quality, something to protect. And hopefully, pave the way for young disabled people like myself to be given more options for their future, and not have to fit into a society that shows unending reluctance to accommodate for them.

Alas, disabled people rarely make it into powerful positions, which is what crossed my mind as I passed the university near my house today, and saw the crowds of students not far from my own age, making the most too. Ehlers-Danlos Syndrome has forced me to confront the deep and difficult parts of society, the overall perception we have on living with a disability, the realities of health care. Physically, it's given me unimaginable amounts of pain and trauma, and that's something that has changed my perception of myself; I may be no inspiration but that doesn't mean I'm not proud of the discovery that I can endure & I can persist with what is deemed to be the most unimaginable of life changing occurances. Something which TV told me was worse than death, and politics taught me was the least productive and therefor the most burdensome existence to have. In the face of loss and grief I aim to acheive happiness, fulfilment & ambition. That's not inspirational; that's life! And I can't help but wonder how it would be if we stopped hurting ourselves over other's definition of success.

I am seeing the good in people now I've been exposed to both sides - the frustratingly intrusive and dehumanizing side, which comes from a place of ignorance and fear, and a stranger's need to comment silly things about my chair, which at first felt like an act of self congratulation, but now also feels like a gesture of solidarity. Ehlers Danlos Syndrome is a complex, multisystemic condition, it requires x and y for treatment and continuous medical input... but most importantly it's a life changing experience. It's an ongoing process, living with the internal and external experiences associated with EDS. Way into the future, I have hope both battles will have significantly more positive associations and prognoses. 

*For those of you who don't know, this is a term used to describe the way able bodied people turn disabled people's accomplishments into their own motivation/"inspiration porn". It's a harmful gesture, most commonly used in media, because it both makes disability such a terrifying thing that merely living with it is a tradgedy, while simultaneously pressuring disabled people to do more than physically & mentally necessary in order to be considered a success. All the while no one does much to challenge stigma or helps those with a disability. My best example and most used by infuriated activists: "The only disability in life is a bad attitude" - a quote by Scott Hamilton.