Posts by BB participants - Julie Barrett

Hi everyone. I’m Julie, I’m in my mid thirties and live in South West England. I have multiple health conditions that have mean I need to use a wheelchair full time and rely on family to help me with day to day things that most people take for granted. Over the last eighteen months or so my health has rapidly deteriorated. Apart from a weeks stay in hospital recently, I’ve not been able to leave my bedroom since early November 2017 (I’m writing this at the end of February 2018). That’s the boring, depressing stuff got out of the way- now I’d like to introduce you to the chap who gets me through the tough times, keeps me safe, helps me with everyday tasks and saves my life on pretty much a weekly basis. Please say hello to my assistance dog Elgin.

He is a three and a half years old Labrador who was trained by an assistance dog charity called Canine Partners. Elgin has completely transformed my life, and has saved my life by on numerous occasions by fetching help when I am choking and losing consciousness (I have problems swallowing due to a medical condition ). Several when I’ve been home alone and choking Elgin has managed to save me himself by thumping me in the back with his head or paws then nudging my throat hard with his nose, he then frantically licks my mouth (it’s gross but it makes cough and splutter and start breathing again so I don’t mind the grossness lol). We think he’s learnt to copy what Mum does to stop me choking which is incredible. 

He's given me back some of the independence I lost when I became a wheelchair user and is my little ray of sunshine. He helps me with things like dressing and undressing, fetches the phone when it rings, picks up dropped items, gets things off low shelves in shops for me, opens and closes doors, raises the alarm if I fall when transferring to my wheelchair and dozens of other tasks. He also alerts me to low or high diabetic sugar levels, and he alerts me about ten minutes before I have a severe muscle spasm or seizure. This gives me time to take some medication so that the spasm isn't as bad and doesn't cause as much damage - they are so violent that they often dislocate my joints. 

I’m currently fighting severe repeated infections and feel very ill with it and very low mood wise. I’m being treated at home with daily nurse visits as I don’t cope well with hospital stays (I especially hate being away from Elgin). He is what’s keeping me going - I’m determined to be back to my ‘normal’ soon so that I can enjoy spending time with him outside of the house. Love you boy, you’re my hero.

Posts by BB participants - Meghan-Alice Hughes

Hey everyone, what I want to talk about today is being an adult with Autistic Spectrum Disorder. Now a lot of people might be like “there’s nothing special about being an adult with autism?!” but to me there is! There’s this particular feeling you get as an autistic adult that you can’t replicate. It’s the balance of being treated like an 8 year old whilst also being expected to act like everyone else your age.

I wanted to write this more as a “please stop expecting so little and yet so much from us” to the people who know us. (obviously this post is made from my own experiences, but they are ones which I have shared with others my age/older who have said they have also had these experiences/share these thoughts)

I see people my age on social media everyday doing things I could never ever do, and yet they’re things that are almost expected of me. Things like going into town on my own, a common thing to do for a “regular” 25 year old and yet is one of the most terrifying and meltdown-inducing things I could ever think of attempting. Things like going out to bars and clubs, another thing that makes me want to crawl into a hole where no one could ever possibly find me.

But also things that people my age have been doing for most of their lives that still cause panic attacks in me, the main one being brushing and washing my own hair. An everyday, normal thing for most people, yet something that causes me an immeasurable amount of stress everyday. I’m lucky now that my fiancée does my hair for me everyday so that it always looks presentable , but until last year I washed my hair every other day and had a panic attack every. single. time. But now she washes it for me, which still causes stress but so much less than doing it myself. And she brushes and styles it for me so I don’t have to do anything. (i’m very lucky)

However when people find these things out I can see how it goes in their head. The “well she’s 25 but my 6 year old can brush her own hair…maybe I should treat her more like a child.” And to those people I have one thing to say; please stop.

I am not a child. I am an adult who struggles. I am not your six year old. I am 25 with a master’s degree, and yes I might not find it in me to be able to do certain things you expect me to do, but I do not need to be treated like less of a person for it.

Not being able to go places on my own without feeling terrified isn’t fun. Not knowing that i’m meant to respond, or how i’m meant to respond when people talk to me isn’t fun. Not finding it in myself to fight off a panic attack to be able to do my own hair isn’t fun. And neither is being judged for these things.

Sometimes it feels like autism takes a lot away from me as an adult, but sometimes it gives you so much more than it takes.

For example, i’m so good with the girls at rainbows and brownies because I share a lot of their interests. I’m good with animals because it’s easier for me to understand them sometimes than it is other people. I’m honest, and everyone knows that if I say something to them I mean it. And it’s given me an amazing community to be a part of, the asd community i’ve found on instagram (find me @otherkindofnormal)  has made this whole entire mess of feeling left out of my own life feel better. It used to feel like I was watching life happening and never knew how to make myself fit in with it, like no matter what I did I was on the outside. Feeling closer to people younger than me but expecting to socialise with people my age who just didn’t get it. But now I have this whole group of people that get it like really truly get what’s happening, and honestly after 20+ years of feeling left out – it feels amazing!

Posts by BB participants - Hayley Tackett

Hi my name is Hayley and I’m 20 years old, but my story starts way before right now. 

As a baby I was very sick and my knees dislocated since before I could even walk with no explanation. I’ve had 6 surgeries to correct that as I’ve grown through the years. At the age of 13 I was diagnosed with Endometriosis, and two years later another major tragedy seemed to strike. I was have major hip pain, that nobody could explain besides telling me it was all probably in my head and that I just wanted attention(all of this while I was in the hospital for a month). 

At 15 (almost 16) they said they were going to send psych in and probably have me committed. Soon after 3 am someone came in my dark room, and said he didn’t even need to examine me; that he already knew what was wrong. I look at my dad like “Here we go!” And as my dad started to shut him down. The doctor said “Hold on, let me explain. I’m a rheumatologist, and your daughter has Juvenile Idiopathic Arthritis and that has been what she’s been dealing with her whole entire life, that’s why everything dislocates.” That’s what I got for my 16th birthday, someone that finally believed me and knew I wasn’t lying!! 

Still 4 years later, were looking for the proper medications for me, I’ve been on over 27 different arthritis medications throughout the years. Currently I’m on infusions of Remicade (chemo) and a high dose of steroids every 4 weeks, as well as methotrexate shots weekly. Plus all of my other 17 meds. 

And I’m going to be a camp counselor for kiddos with chronic illnesses this summer. To show them that your illness doesn’t own you. I also run a support group with almost 200 members on Facebook. Without all of this, I wouldn’t be who I am today!

Posts by BB Participants - Lauren Meyler

Posts by BB participants - Chanel Sambrookes

Fibromyalgia

So the thing I’m going to write about is my illness and it’s called fibromyalgia syndrome (FMS) or known as fibro for short and fibromyalgia is a long term condition that causes wide spread pain from head to toe, aswell as widespread pain it has a lot of other problems that come with it. 

Common problems include: 
Extreme fatigue
Problems with mental process known as ‘fibro fog’ 
Muscle stiffness 
Headaches 
Irritable bowel 
Sensitive bladder 
TMJ problems (Tempomendibular joint) 
Increased sensitivity to pain 
Any many more 

There’s no exact cause of this illness but triggers and doctors aren't very educated with the condition which can be so annoying as they put EVERYTHING down to it and tends to put you down! They sent you to Physio which makes it a lot worse they say ‘oh you need to keep fit’ it’s ok them saying that but unless your going through it you don’t know what it’s like and how you pay for it the next day by not being able to move and function! 

I only got diagnosed with this in October but since being diagnosed it’s all made sense thinking back to when I was younger it’s crazy to think Iv been like this since the age of 7/8 and only being diagnosed at the age of 18! (I’m 19 Now) also! There’s no test to diagnose it either! They have to do multiple tests to rule out other illnesses first such as autoimmune disease and Rheumatoid Arthritis ect not enough research goes into this and it’s sad because it needs to be taught so people have more of an education about it instead of them just saying 
‘oh your tired’ 
‘Take painkillers you will be fine’
‘It’s in your head’ 
..you know things like that! But oh well ay! Tomorrow’s a new day! 

Thanks for reading don’t know if I done this right I've never blogged before haha! But was worth a go! 

BB Participant Fundraising: Megan Whitehouse - 'Guess the name of the Bear'

Have got an extra special 'thank you' to make to Megan Whitehouse, who is a participant of Bravery Bottles, having multiple chronic illnesses herself. 

For the past couple of weeks, Megan has been selling 'names' for a 'Guess the name of the bear' challenge, all money raised in aid of Bravery Bottles. Megan chose the teddy and it’s name in advance (which only she and I knew!), and she came up with a list of 40 names; the real name obviously included in that list. After uploading photos of the bear (in its own wheelchair too!), she published the list of names, and sold each ‘name’ for 50p. Once all 40 names had been sold, Megan then announced the real name of the teddy - and the person who had paid for that name was the winner, and has been sent the bear & wheelchair as the prize.

Megan organised the fundraiser completely on her own, exclusively for the purpose of fundraising for the project. As the project has grown, it has needed increasing amounts of money invested into it. I’ve had so many generous donations on top of the couple of fundraising events that I’ve held - and I’m so grateful to everyone who has helped/donated in any way. However, the project is becoming more and more well-known, which means more people signing up to be part of it (which is incredible!). As a result though, the more people participating, the more money required - for stock, supplies, postage and shipping fees, awards, printing, admin fees etc., all essential to keep the project up and running, and running in the same way as when it was created; free of charge to any person, with any chronic illness, anywhere in the world.

It’s thanks to Megan, and other members who are in the process of holding/organising fundraising activities like this one, that the project has become as successful as it has. There are so many people who want to contribute to the project, but are simply too unwell to attend the events that I hold or to hold events themselves, so raising funds online through competitions and draws like Megan’s, means that more and more chronically ill people are able to sign up and benefit from a project that rewards the bravery they undoubtedly show, as a result of the challenges that come with having a lifelong illness.

Megan - thank you so much for your fundraising. You’re an asset to the project and I’m so grateful for organising and holding the event and for the money you raised as a result. Congratulations too to Alex - the winner. The bear’s name is Cookie, and I’m sure will be well looked after in its new home🙂

Posts by B.B. Participants- Naomi Gilchrist

13th April - FND Awareness Day 2018 - "My Story"

In layman’s terms FND is an umbral term for different neurologically based symptoms and they occur when the hardware (body) works but the software (brain) does’t. Your brain is continually sending out messages, such as when you walk its telling your legs to move, with FND those messages don’t get though properly so you can have an unbalanced gait or lose feeling in your legs completely.

"Little is known or understood about this disorder" - FND Hope

FND is unique to each person, some people may just have one or two symptoms and other people, like myself can be affected in many different ways.

FND is different to other disorders such as Conversation Disorder.

I've had FND for about 4 years now. It simply started with fatigue, vision problems and loosing my balance, falling over at times, absences and muscle twitches and spasms but I just put it down to being overworked at University. Then one day out the blue I went into a lengthy full-blown tonic clonic seizure in which I stopped breathing and had a tube put down my treat to keep my airway open. From then on seizures became a daily occurrence and I was told that they was non-epileptic in nature.

Because I have numerous symptoms I personally prefer to use the term FND and now, having a specialist neurologist (which took 4 years to get) agrees with this.

FACT: An FND diagnosis should not be made from negative test results. Positive signs such as the Hoover sign for weakness and balance issues which improve with distraction are some examples. - FND Hope

I saw numerous neurologists and neuropsychologists but non where able to help much and unfortunately I didn't live in an area where I could access he right care. After a battle and long wait I'm now finally under a brilliant Professor who has actually written a lot of information about FND.

FND affects me 24/7/365, literally. Like with most chronic illnesses I get good days and bad days and days where it's a mix of them both, I can start off having a good day then my spasms or seizures start and I end up finishing on a bad day. FND is a highly complex and unpredictable illness. Some days I can function fine, other days I am confined to my bed, the house our the sofa. I only leave the house for essential like appointments and only then do I go where I'm with familiar people who know me.

FACT: FND can be as debilitating as other neurological illnesses such as Parkinson's and MS. - FND Hope

I'm well know in A&E unfortunately and because of how misunderstood FND is I don't always receive the best care from professionals, including my GP. Often clinicians don't see FND as an actual diagnosis, but as a set of medically unexplained symptoms because organic illnesses have all been ruled out, such as epilepsy, MS etc. "The most common misconception is that patients are in control of some or all of their symptoms." - FND Hope

As well as FND I also have M.E. (Myalgic Encephalopathy) and joint hypermobility (I have other illnesses but these are my main three) and they all interlink with one another, for example all three illnesses cause chronic pain and fatigue.

Because it’s the brain that’s malfunctioning FND affects me in many ways. 

Like I've just mentioned I suffer from daily seizures - absence seizures which are brief losses of consciousness; myoclonic seizures which are involuntary jerks, usually in my right upper body, but sometimes I get them in my legs or in my whole body and tonic-clonic seizures which are unconscious convulsions which can last anywhere from a few minutes to sometimes over an hour. A complication for me is that I have Joint Hypermobility Syndrome (possibly a condition called Ehlers-Danlos Syndrome which I'm in the process of being assessed for) so when I have my myoclonic and tonic-clonic seizures my joints can sublux (become loose) or dislocate which is very painful. There are different triggers for my seizures such as tiredness, pain (so dislocating my joints doesn't help), stress and over sensory stimulation, such as being in noisy places - all things which make it harder for my brain to function as normal. I get very anxious about having seizures which in itself can at times trigger me to have a seizure so it's a vicious cycle. Nowadays I can usually tell (thought not always) when I'm going to have a seizure, or people like my dad or carers can tell when I'm going to have one and can get me somewhere safe, but not always, it just depending on timing, sometimes a pre seizure aura gives enough time to get me somewhere safe like the sofa, other times my seizures can come on very suddenly.  I've lost count how many injuries I've had from my seizures to name a few incidents I've had numerous falls, head injuries, scalds (I once had a seizure holding a freshly boiled kettle a few years ago), and cuts (I had a seizure holding a plate in my hand and went from standing to the ground and cut my hand on the broken shards) and broken bones.

I have different symptoms in my lower body such as pins and needles, itching and painful spasming in my muscles as well as total loss of feeling (functional paralysis) which can last from a few minutes to several hours. My gait is also off-balance which leads to regular falls. As a way of coping I try to make light of my 'wanky walk' but I can be really frustrating as each step takes a lot of effort. I use mobility aids including crutches or my wheelchair depending on my level of mobility and how well behaved my legs are behaving.

I also have weakness in my whole body which can be very frustrating and scary at times and some days it's worse than other days. So for example my arms can become heavy and floppy and I lose all my strength in them. As well as this I can also get a tremor which of me is usually in my legs when I trying to walk or in my hands and arms when I'm trying to complete tasks like carry a cup.

These issues with mobility and movement fall under the subcategory called Functional Movement Disorder.

Chronic pain is another big feature for me and happens when signals of pain remain active in the nervous system for weeks, months, or even years and unfortunately FND related pain does not always respond to medication. Sometimes my pain is just there in the background, other times I double bent in agony.

Bladder and bowel problems. I have incontinence because my brain does’t tell me that I need to go for a wee until its too late with is quite embarrassing and affects my day and night too because I'm needing to make urgent dashes to the loo and because of my mobility problems I can't always make it in time so I wear incontince pads which is hard to accept at the age of 24. I also have bowel issues again because my gut is slow and is complicated by my hypermobility disorder.

'Brain fog' and cognitive difficulties are another feature I have. I get very forgetful and confused for example  recently I used a plastic plate until the microwave grill - oops! Some of my cognitive symptoms can include confusion, forgetfulness, fatigue, difficulty with thinking, focus and completing tasks and poor concentration. Keeping a blog is difficult as a result so I schedule posts and type ahead of time and add on here and there until it's completed and ready to be published. 

Memory loss is more than usual moments of forgetfulness for example I lose the name of common words so you might find me saying "that thing that you sit at to eat" as I've forgotten the word 'table'. 

My short term memory is also pretty bad. I often forget something that either I said or was said to me five minutes ago. My Dad or step-mum will go out and tell me where they are going only to receive a text or phone call from me asking them where they are. It can be quite scary at times.

Part of the cognitive dysfunction is difficulty with my speech. At times it can be slurred so I can sound and be mistaken for being drunk, especially paired with a headache or migraine. I also lose the words for common objects, for example "table" so instead I'll say "that wooden thing you sit at to eat".

I have Chronic Daily Headaches and have frequent migraines including Hemiplegic Migraines.

I'm very hypersensitive to things like light, sound and smell. I wear tinted lenses which make things easier but sometimes when I'm having a bad day I have to lay in bed in the dark with an eye mask and ear defenders on because I can't tolerate any sensory input.

My vision is also affected which comes from muscle and nerves problems and includes blurred and double vision which is mostly corrected with glasses and eye exercises. I also have limited peripheral vision.

Despite chronic fatigue and at times hypersomnia which is excessive sleeping I also struggle with insomnia which in itself exesserbates other systems such as cognitive function, pain tolerance, low mood etc.

Currently there are no NICE guidelines on how to treat and care for patients with FND and very few effective treatment plans exist; as well as this much more funding and research is needed to understand the condition. In the UK there are very few specialist and services that exist for patients with FND.

As well as battling the illness is battling for care. It took me 4 years to get to see the right neurologist and it's a bit of a postcode lottery in terms of where you live. Far too often access to treatment, both in terms of health and social care is a fight and sometimes it feels a losing battle. I have to self-fund my carers despite concerns raised by those involved in my care stating I need more care. My home, though it is a place to live can be a challenge at time. The bathroom is hard to access as I cannot get my legs over the bath and more grab rails are needed. I also struggle with the stairs and have had numerous falls and my wheelchair is difficult to manoeuvre around in. On my bad days I am bed bound, though I try my hardest to spend my days on the sofa and leave my bedroom for resting and sleeping to help with sleep hygiene. Sometimes my house/bedroom feels more like a prison than a home. I'd love to have a place of my own but that would require adaptations, wheelchair access and extra care and I doubt that locally that would would be near impossible to get. Even my wheelchair isn't perfect, though it does the job. I have in the past had pressure sores from being stuck in bed which are horrible and very painful.

One of the biggest challenges is the poor attitudes and lack of understanding around FND. My GP fails to see FND or M.E. are a real illness, but instead just simply a set of 'medically unexplained symptoms' despite being under a neurologist for the illness. And some clinicians don't even believe me to be ill at all. It's these attitudes that lead to poor and misunderstood care, or even the delivery of care at all. I just hope that when I get the official diagnosis of Hypermobility Spectrum Disorder/Ehlers-Danlos Syndrome that things may improve and my symptoms may be taken more seriously.

"Lack of understanding the condition has negatively influenced treatment and care. Researchers, money, and volunteers are greatly needed." - FND Hope

I'm on a mix of different treatments including medication and physiotherapy. I'm trying to push for hydrotherapy but unfortuanatly our NHS Trust doesn't have this facility. I'm also waiting on funding for a specialist rehabilitation unit. I also do physio exercises at home and have been under the physiotherapy team at the hospital and seen occupational therapists too. Like I mentioned above, I don't like in the best area where I can access all the therapies that could help me manage my symptoms, but now I'm under my Professor in London we are slowly getting there and trying to get treatment, like the rehabilitation unit. It really is just a postcode lottery depending on where you like. When I saw Professor Edwards last year he want's to rule out epilepsy for sure so I'm waiting to have a video telemetry test done because some of the presentation in my seizures don't quite match typical non-epileptic seizures, for example having my eyes open during seizures and my loss of awareness of what's going on around me.

I feel very lucky to now be under the care of Professor Edwards and I'm hoping with time and getting the right treatment that my symptoms will become more manageable, though I know that I will most likely always be there and I can live my life not limited by my symptoms but to be able to live with my symptoms and hopefully one day return to education and manage some form of employment; just maybe not quite in the way I had it planned out 6 or 7 years ago. It is my dream to one day train as a Child Psychotherapist. I just need to be patient and take one day at a time.

Useful Links:

• The Basics of FND: https://fndhope.org/fnd-guide/
• Diagnosis:https://fndhope.org/fnd-guide/diagnosis/
• Treatment: https://fndhope.org/fnd-guide/treatment/
• Symptoms:https://fndhope.org/fnd-guide/symptoms/
• Common Questions: https://fndhope.org/fnd-guide/common-questions/
• Resources: https://fndhope.org/resources/
• Videos: https://fndhope.org/resources/hope-videos/
• FND Life Without Limits: FND https://www.fndlifewithoutlimits.com/lets-talk-about-fnd/
• FND Life Without Limits: Non Epileptic Seizures https://www.fndlifewithoutlimits.com/seizures/
• The Mighty: Functional Neurological Disorder: https://themighty.com/search/?search=Functional%20Neurological%20Disorder

Naomi runs her own blog - ‘Diary of a Zebra’ - which you can find here.

The original post, which is published on Naomi’s blog, can be found here.

Design a bag competition

The ‘Design a Bag’ Competition gives all members a change to create a design, either by hand or digitally,  and receive that design on a bag (whether you win or not), and the prizes for the winner and runner up  come on top of this. 

The competition is optional. 

There are a number of rounds involved from the initial submission, to finding an overall winner, which are detailed below:

Stage 1: - participants to submit their designs.

Stage 2:  - All submissions have been uploaded and published, open to anyone to purchase. Out of the 20 designs, only 8 will continue into stage 3, so participants will be encouraging whoever they can to purchase their designed bag!

Stage 3: The 8 finalists will then have their designs subject to a public vote; the 4 designs with the most votes at the end of this stage will technically all have 'won', but there is a final stage to determine which place, and which corresponding prize they have won.

Stage 4: This final stage, as mentioned before, is to order the winners and award the prizes. For this to happen, the 'shop' will re-open for the final time and for

 the final chance to have people put in orders for your bag. Running alongsidethis will be another vote this time only for other members of the project. 

The amount of purchases from round 2, combined with the public vote in round 3, add

to

the number of final purchases and private votes in round 4, will determine what each person will win.

THE PRIZES ARE:

All 20 entrants, regardless of the amount of sales made, will receive a bag with their design printed on it, as a token gift for entering,

8th, 7th, 6th & 5th place, on top of receiving their bag, will get a framed photo of their design with a certificate, bonus charm, and 'BB Bargain bag' (necklace, suction hook & bead pot) - usually available in the BB shop.

4th, 3rd, 2nd & 1st place = designed bag, ornamental heart, personalised keyring/necklace, and a bonus charm

PLUS:

4th PLACE - 6-month magazine subscription

3rd PLACE - English Tea for 2

2nd PLACE - Makeover and Photoshoot

1ST PLACE = 4 TICKETS TO 'CRUFTS', WITH HOTEL AND BREAKFAST INCLUDED

So, to all participants - good luck!

-------------------------------------------------

Results:

Congratulations to everyone who submitted a design and thank you for getting involved in the competition regardless of the results. All submitted designs are below:

 

In stage 2, the designs were whittled down to the top 8:

  

A final opportunity to purchase the remaining designs, plus a vote by BB members revealed the winners* (whose bags you can still buy in the Etsy shop:

3rd place: Hayley Tackett

Prize: Selection of tailored prizes 

Final product:

Joint 2nd place: Nicole Gray

Prize: Makeover and photoshoot

Final product:

Joint 2nd place: Rosie Powlesland

Prize: Annual English Heritage Membership

Final product:

1st place (winning design): Alley Daley

Prize: Night before in a hotel + breakfast, and 4 tickets to the annual Crufts Dog Show

Final product:

*PLEASE NOTE: Some prizes have changed/been adapted for a variety of legitimate reasons.

————————-

On the 11th March, Alley went to Crufts Dog Show - some of the photos are below (there were too many to include them all!)