Thursday, 31 May 2018

Breanna’s Cards


Today I received a lovely e-card from Breanna for which I am filled with gratitude for receiving. She runs a project sending out e-cards to people with chronic illnesses to brighten up their day.

The Instagram for Breanna's card project is @breannascards a direct link can be found here.

I just wanted to give a shout out to Breanna for what she does to help others. Alongside the project Breanna is also a S1 Paralympic swimmer for Team USA.

Monday, 28 May 2018

One Second Every Day - May 2018: Week 4


  • Monday 21st May - Struggled with fatigue during the day but perk up a bit later on. I also tried to get hold of my OT at wheelchair services to check that I received the right wheelchair as I was meant to get a lightweight one but its very heavy to pick up even for Dad. It's been lovely and warm in the sun room where I settled myself today and got on with some blog related admin and chatting to some people on the 'Young People with Functional Disorders' Facebook group. Managed to get a section of my distance learning course typed up on the only workbook. Did mean to start reading the next section but was feeling a bit fogged. Also meant to start typing up some pen pal letters but again was feeling a bit too foggy so opted for watched and episode of Watchdog on my laptop with some jelly and ice-cream (you can't have ice-cream without jelly!). There's always tomorrow for college work and letter writing. I then caught up with my two previous week's second-by-second posts and I aim to type each night the day's account to make it more manageable and to keep my journal as accurate as possible. Right, now I'm heading off to bed!
  • Tuesday 22nd May - Well, what a day. Its been a bit of an emotional rollercoaster and I'm glad its over. Woke up okay and put n my favourite zebra t-shirt (I've been wearing zebra things for EDS/HSD Awareness Month)/ All morning my hips where in agony, I took some co-codamol and it helped a bit and I gave it until lunchtime then resorted to taking a bit of oramorph which I hardly use but I was in so much pain and thankfully that helped. Because of the pain I was a bit fatigued but as the pain eased I perked up a bit but I was still feeling low. As the day wore on and my spoon count depleted so did my energy levels so I spent the evening wrapped up in blankets on the sofa watching CSI. Because I was feeling low Dad sat with me and we finished off a half watched episode of 'Can't Pay? We'll Take it Away' and then Mandy and I watched and episode of Desperate Housewives. They then went out so I watched a couple more episode of CSI and despite my fatigued still managed to do my physio so feel proud of myself for that as I wasn't in the mood to leave my nest of blankets and cushions. I'm now in tucked up in bed ready for an early night. My bedroom could do with a tidy so that's on tomorrow's 'to do' list.
  • Wednesday 23rd May - Didn't sleep well at all, I kept waking up with my hips in agony and having to sort out pain relief whilst half asleep. Carer's came this morning and I was shattered so I didn't feel like going out so we stayed in and did a few things like put on fresh bedding and wash my hair and have a nice hot shower to help with he pain and use my Birchbox things to try and do a bit of self-care. I settled on the sofa and spent the afternoon struggling to concentrate; flittering between my laptop, typing a letter and watching the TV and just simply resting because I was so brain fogged. Thankfully my hip pain calmed down by the afternoon after taking a bit or oramorph. Mandy made a delicious tea and it's unusual for me to really enjoy a meal and after tea we watched an episode of Desperate Housewives and I went upstairs to finish off a the letter I had typed and printed out earlier that afternoon. I've just finished off a guest blog post and tying up a few loose ends and I'm off to bed because I am shattered! I'll see how I am in the morning with regards to going to group therapy as if my pain and fatigue is anything like it is today I'm going to struggle and I've muddled through it before when I've been like this but I don't think the staff truly understand how difficult it is for me and they see me rock up and get through the day and think "oh, she managed the day" but they don't see that underneath I'm paddling like mad to stay afloat and how the PEM is afterwards.
  • Thursday 24th May - Had a better nights sleep and pain wasn't too bad but was still feeling a bit rubbish but decided to still give group therapy a go and it was a nice small group today. By lunch time I was ready to go home but listened to some music and felt a bit better. By the end of the day my fatigue and pain was flaring. I stood up an fainted so laid on the sofa for a bit. Had a seizure on the way home and went to bed, watched Chicago Med for a bit but started to get tired. Ended up sleeping for at least 3 hrs (Dad and Mandy forgot to wake me up). I ended up having my tea at 9pm then the three of us watched a programme on TV and now I'm typing this and sat in bed and have the TV and try and get some sleep in a bit so I'm not too tired tomorrow.
  • Friday 25th May - I made the executive decision today not to go to go to group therapy this morning due to not feeling great. I had a really strong pre-seizure aura and felt it was safer to stay at home on the sofa where I was safe. I spent the day struggling with brain fog and pain. I flitted between napping, seizures, watching television and doing a bit of college work. Getting the college work was a bit of a relief as I felt I was getting a bit behind but it was a struggle so I may need to revise what I typed to make sure it correct and add in missing bits. We watched a film in the evening but I couldn't; follow the plot and fell asleep. Eventually after Dad and Mandy agreed they wasn't following the plot we decided to watch it another time and head to bed and I more-or-less fell straight to sleep once I got settled in bed.
  • Saturday 26th May - Had a lay in this morning, my only real morning I can do that. I woke up around 11.30am but them feel back to sleep and got woken up by my medication alarm at 12.10pm and got up. I then took my meds and got dressed and spent the rest of the afternoon dosing and watching TV. I've been feeling quite dizzy and faint when I sit/stand up so I've spent most of my time laid down. I feel bad just spending the day laid watching TV but I try and remind myself that my body needs to rest and recharge as much as possible and Saturday is my day that I can really do that. I settled myself in bed early but when Mandy came home just after 9pm she suggested we watch Desperate Housewives so I sat with her and watched an episode before heading to bed.
  • Sunday 27th May - Made it to church. Wasn't feeling 100% and at one point I was feeling a pre-seizure aura in church and felt panicky that I was going to have a seizure in public (my worst fear) so went and found somewhere quiet, thankfully no seizure happened. I spent the rest of the afternoon watching TV feeling REALLY cold and feeling frustrated with why I felt so cold but I googled it and found out that people with M.E. can be hypersensitive to temperatures, especially feeling cold much more that people who don't have M.E. due to dysautonomia which made sense to a lot of my other symptoms too. In the evening we Dad, Mandy and me watched a Indiana Jones film and then I headed to bed.



My gratitude list list for this week is:
  • Online support
  • My wheelchair
  • Jelly and ice-cream
  • Pain relief
  • Spending time with Dad and Mandy
  • My carers
  • Fresh bedding and clean pj's
  • Music and my iPod
  • Lay-ins 

GUEST POST by Madison for EDS/HSD Awareness Month

My name is Madison and I am 10 years old. I have many weird things happen with my joints and my body over my life more consolidated in the past few years. My mum has thought in the back of her mind for many years that I may have been hypermobile given how my knees lock back and a couple of other quirky things and positions I was able to do, however it wasn’t until this year after a couple of repeated issues with random swelling and fluid on my knee and some issues with my elbow was she able to get a referral to a specialist.
When I was first diagnosed with EDS I was relieved, now me and my family know what was wrong with me, but I was a little scared because I didn’t quite understand what EDS Hypermobile meant.
Living with EDS is tough, first your body tires a lot easier than most people, so when you do sports you get tired a lost faster than your peers. Also when you do everyday stuff your body/joints can hurt. For example my knees hurts a lot whether it be playing, running, walking etc.
Sometimes EDS is a bit annoying because when I wanted to play Rugby, because I had EDS and the risks to my body I couldn’t do it.
Another reason why it can be very frustrating to have EDS is because just by looking at someone you cannot tell they have EDS and when you get tired people think and tell you, you are being lazy and that you just don’t want to put the effort in.

Sunday, 27 May 2018

GUEST POST by Diana for EDS/HSD Awareness Month - 'Three little words'

Three little words

“I believe you.”

Powerful words to someone with an invisible illness. Ehlers-Danlos Syndrome (EDS) fits right in there.  You look fine one day, then the next – your ankle is in a brace, you have trouble walking because your back hurts, and maybe you even have a migraine that seems to come back when it's most inconvenient.

To be honest, EDS (we have hypermobility type) really is one big inconvenience. 

My 10 year old was diagnosed after 3 years of symptoms that kept coming back – chronic fatigue, joint problems, headaches/migraines, digestive tract issues that culminated in repeated bouts with mouth ulcers so deep they gave me the heebie jeebies, etc.  Not long after, years of her “normal” being pain from migraines, joint pains, sprains, strains (what she frequently described as “dislocations”), my 17 year old was diagnosed.  Only took her 7 years.  Me?  I was diagnosed after the kids – took 30+ years.

As a parent, my focus is on the kids and their ability to navigate life.  They have all the typical symptoms.  We were lucky ones.  Once they got referred to the pediatric rheumatology clinic at Cincinnati Children's Hospital and Medical Center on 2017 (Ohio, USA), there was never a doubt from the staff.  Not one.  They said, “I believe you.”  I cried from relief that we had an answer.  Three little words.

My husband is healthy as a horse.  He barely knows what a headache feels like.  Thankfully, he believes us, too.  “I believe you.”  Three little words.

This week, my 10 year old told me she heard a teacher say they were looking to see if she was really having trouble walking the other day.  It would have been better if she had simply heard, “I believe you.”  Three little words.  


Yesterday, my teen's school put together a medical plan for school accommodations.  It's been a hard road to get here.  Prior to yesterday, they sat on it.  They didn't say the words, but ignoring the request for the medical plan meant they didn't think it was real.  If only they had just said, “I believe you.”  Three little words.

The kids' doctors believe them.  Their behavioral therapists believe them.  But when you get the skepticism, you become quiet.  You don't tell people anything about your condition.  You pretend.  You become someone less authentic.  It isn't about complaining, either.  It's about knowing the people you care about in your life care enough to believe you.  “I believe you.”  Three little words.

Three little words can change the future of a person with chronic pain.  There is no need to understand the medical condition.  All that's needed is to believe. 

Three little words.

“I believe you.”

Friday, 25 May 2018

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 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 imput...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.

Thursday, 24 May 2018

GUEST POST by Ella for EDS/HSD Awareness Month

Ella shares her story about living with EDS. She keeps a blog documenting her journey which can be found at: https://ellahollis.wordpress.com
May marks the month of Ehlers-Danlos Syndrome (EDS)/Hypermobility Spectrum Disorder (HSD) Awareness Month, a condition that is very close to my heart. 
EDS and conditions secondary to it have seen me in hospital, having to use a wheelchair, require major surgery, rely on multiple medications daily, have to intermit from Uni and ultimately turn my life and the lives of my family upside down.
From EDS UK;
"The Ehlers-Danlos syndromes (EDS) are a group of thirteen individual genetic conditions, all of which affect the body’s connective tissue. Connective tissue lies between other tissues and organs, keeping these separate whilst connecting them, holding everything in place and providing support, like the mortar between bricks. In EDS, a gene mutation causes a certain kind of connective tissue – the kind will depend on the type of EDS but usually a form of collagen – to be fragile and stretchy. The stretchiness can sometimes be seen in the skin of someone with EDS; individuals with the condition may also be able to extend their joints further than is usual – this is known as being hypermobile, bendy or double-jointed. As collagen is present throughout the body, people with EDS tend to experience a broad range of symptoms, most of them less visible than the skin and joint differences. These are complex syndromes affecting many systems of the body at once, despite this EDS is often an invisible disability. Symptoms commonly include, but are not limited to, long-term pain, chronic fatigue, dizziness, palpitations and digestive disorders. Such problems and their severity vary considerably from person to person, even in the same type of EDS and within the same family." 
I’m fortunate enough that I’m the only member of my family with this diagnosis, but that does pose the question of where it has come from? The hugely varied presentation of symptoms amongst us individuals with the same diagnosis was so evident to me when I attended the EDS/HMSA conference last year. 
Recovering in hospital
For me, the affects of EDS include me having to use a wheelchair, fainting frequently due to PoTS, my bladder doesn’t work so I’m awaiting some type of surgery on that, my bowel doesn’t work which led to my ileostomy, my joints dislocate daily, my swallow function is impaired and since my operation my stomach has been rejecting all food so I'm currently using NG tube for nutrition  It’s fair to say that since I’ve had my EDS diagnosis it’s been a journey… a relentless one.
There may just be one diagnosis of Ehlers-Danlos in my family, but my whole family feel the impact of it.
The month of May aims to improve awareness and knowledge of Ehlers-Danlos Syndrome and Hypermobilty Spectrum Disorder, in addition to raising vital funds. EDS and HSD is hugely underdiagnosed, which is where the zebra symbol originates from; in medicine, the term ‘zebra’ is used to refer to a rare disease and throughout medical school, students are taught, ‘when you hear the sound of hooves, think horses, not zebras’. This means that doctors learn to expect common conditions, and forget that zebras do exist, so getting a diagnosis and treatment for these rarer conditions such as EDS and HSD can be difficult.
There are many things that people can do to get involved in EDS/HSD awareness month. These include;
  • Using the awareness presentations on the EDS UK website to gain a better understanding of the condition and to share the knowledge with others.
  • Organise a fundraising event for EDS UK; fundraising packs can be requested from their website.
  • Volunteer for EDS UK in various roles that they have available. These include becoming an area coordinator, working in the office or helping test new information for the website before it is published.
  • Recycle your old stamps! I save them all year; it doesn’t take any time at all to cut or tear them from envelopes, save them up and post off to EDS UK, the address for which can be found on their website here.
I long for the day where more individuals know about these conditions, more research has be done into them and ultimately a cure is found; EDS awareness month is a great opportunity to work towards this dream.
For more information check out the EDS UK website: https://www.ehlers-danlos.org

Wednesday, 23 May 2018

GUEST POST by Christina for EDS/HSD Awareness Month

Hello, my name is Christina. I'm 22 and i’m an artist, YouTube vlogger, writer, lover of theater, and I also happen to have a chronic illness. 

My sister and I were both born with the mutation for Ehlers Danlos Syndrome. My sister was lucky (thank God) to escape a lot of the complexities that I have unfortunately had to deal with, but EDS is something that really impacts both of us in everything we do. 

8 years. Thats how long it took from the day I started searching for answers to the day I received my diagnosis. 

For 8 years I was told I had anxiety, I was told I had an eating disorder, I was told I had IBS, I was told I had exercise induced asthma, I was told I had TMJD, I was told I have cyclic vomiting syndrome, I was told I had Myoclonic Seizures, I was told I had vestibular weakness. And then I was finally told that what I really had was EDS. 


8 years of medications I never needed, unnecessary tests that left me permanently scarred, and 8 years of the never ending guilt that maybe it WAS all in my head. A big part of my life was stolen from me when I was just 9 years old. 

Now, Ehlers Danlos Syndrome is rare, or at least that’s what they say. If you ask me, its really just rarely properly diagnosed, which really isn’t surprising considering how little funding we receive and how little awareness there is among medical professionals.  

May is Ehlers Danlos Awareness month and every year I try to make it my goal to spread the word.  I have realized that the best way to educate doctors is to educate their patients; Its unfortunate, but its true.  Some doctors you can talk at until you are blue in the face, or give them a pile of pamphlets that reach the sky, but it will go right over their heads. But by empowering other people to take charge of their health, we can demand understanding. It is no longer acceptable for them to remain ignorant. 
Another plus that comes from educating patients is that they will then turn around and do the same. This community of people online that I have stumbled into has been one of the greatest communities of people I have ever known. Encouragement and knowledge is shared freely and everyone is so eager to help one another, even in times when they have so little to give.  But the best thing that I think we can share is HOPE. When most of us were given our diagnosis we were not given a lot of hope along with it.  We are told “There is no cure and you will likely be “confined” to a chair by adulthood,” and then we are sent on our merry ways.  Although there may not be a cure, there are so many treatments available and ways to improve our qualities of life. 


How many more lives need to be stolen away in doctors offices looking for answers? Early diagnosis needs to be the future. 

My miracle has been manual physical therapy, which I cannot rave about enough. It has been life changing!

So if you take anything away from this post, I hope that it is “There is hope out there, don’t ever forget that!  Reach out for support wherever you can and don’t give up on your quest for answers.  And when you do find them, turn around and pass them right back around. You never know who’s life you may change.” 



For EDS/HSD Awareness Month Christina has produced a series of videos and documents her life with EDS through her You Tube channel which can be found here.

Tuesday, 22 May 2018

GUEST POST by Alley for EDS/HSD Awareness Month

I got my Elhers-Danlos Syndrome (EDS) diagnosis aged 21 after years of questions and being told I was making things up. I always had problems with my joints right from being a little kid, I was in minor injuries and A&E more times than I can remember with joint injures (we know now they were dislocations and subluxations) to the point where even my parents thought I was faking it. I continued to lead a fairly active life despite the pain I was in, I suppose I was used to it. I went horse riding regularly, did well in my GCSE exams and completed my bronze and silver Duke of Edinburgh's Awards, despite injuries. 

Until April 2012 where everything changed. I had a horse riding accident in which I damaged my back and neck, it left me a wheelchair user for some time. I did regain my walking for a few months, but by the October I was using the wheelchair again. I was diagnosed with Myalgic Encephalomyelitis, sometimes incorrectly confused with Chronic Fatigue Syndrome. I was bedbound for months and my muscles got weaker. My joints started dislocating more and more, and I didn't know why. I went to the doctors, he had no idea what to do so just gave me painkillers. Eventually, in 2015, a different doctor referred me to a physio who was astonished at how lax and unstable my joints were. She taught me how to relocate my joints (turns out I had been doing so all along) and she mentioned Ehlers-Danlos Syndrome, and so I went back to the doctors and asked to be referred to a rheumatologist. I saw the Rheumatologist in 2016 and he diagnosed me with Ehlers-Danlos Syndrome Type 3, which is hypermobility type. Since then I've had comorbid conditions diagnosed; Postural Tachycardia Syndrome, Gastroparesis, Craniocervical Instability and many more.

I fight EDS and every day, along with M.E. and my other conditions, doing what I can just to survive the day. I know several people who have died from the same conditions as me, and some of these illnesses can be progressive too. I am a zebra warrior, my scars are my stripes!

Monday, 21 May 2018

One Second Every Day - May 2018: Week 3


  • Monday 14th May - Bit of a dull day. Didn't get up to much. Just resting and writing a few post crossing postcards. In the evening Dad, Many and I watched a programme together and Mandy braided my hair for me. (I love my hair being braided and played with).
  • Tuesday 15th May - Had a bit of a long wait at my appointment so downloaded some programmes from BBC iPlayer onto my iPad to watch. When I got home I had some lovely mail waiting of me so I got a reply written and did some more letters ready to be posted tomorrow.
  • Wednesday 16th May - Had my carer come round and had a nice pampering shower and used lots of things collected from my Birchbox's including a nice orangey shower gel and a coffee ground orange oil body scrub and washed my hair and used a hair mask to make my hair all nice and shiny. We then had a bit of spring clean of my bedroom and changed my bedding. Chilled out for the rest of the day. Received some lovely mail and postcards from postCrossing including a postcard from Finland which contained a very awesome Little My (my favourite Moomin character) stamp - Royal Mail only do boring international stamps most of the time. Bed time was lovely with fresh bedding and clean pj's. I put on my zebra pj's with matching slippers and eye mask for EDS/HSD Awareness Month.
  • Thursday 17th May - High fatigue day so chilled in bed watching more episodes of Chicago Med.
  • Friday 18th May - Was meant to have woken up at 8am ready incase wheelchair services came at 8.30am, and guess what happened... I fell back to sleep and got woken by the doorbell just after 8.30am! The man adjusted the footplates to my specification and left me to it. I then chilled for the rest of the day waiting for the collection of my old wheelchair. Had an early night as was feeling quite tired and sat up in bed for a little bit playing games on my iPad listening the Stephen Fry read my Harry Potter and the Goblet of Fire until sleep came.
  • Saturday 19th May - Had a long sleep in. Set my alarm for 10 am to give me around 12 hrs sleep (I've been aiming for around 10) but I fell back to sleep and didn't wake up unduly around 11.35am so I must have needed to sleep! I got up and had some brunch and watched TV and watched some of the Royal Wedding and when I felt more awake I got dressed. Dad then came back home and we got real to go out as there was a local vegan festival on that I wanted to check out so we headed out the house once we was ready. I had a look at a few of the stalls and there was live music playing. The venue was a newly discovered vegan cafe (that I'd defiantly go back to) Dad had a coffee and a slice of cake and I had an oat milk latte and a vegan ice-cream lolly. We then had a look at a few of the other stalls and I bought myself some eye glitter and some hair treatment. We then headed back home and I chilled out for the rest of the day. In the evening Dad and I sat and watched the highlights of the Royal Wedding and then I headed up to bed to try and catch my 10 hrs of sleep.
  • Sunday 20th May - Got up and got myself ready to go out to church. Was a bit tired when I got back so chilled out on the sofa then decided to set myself up in the sunroom where it was lovely and sunny and catch up on a few letters as my inbox is stacking up a fair bit. After tea I had another rest on the sofa as I was feeling a bit brain fogged after all that letter writing. I did hope to get some distance learning work done but that went out the window. Once I'd had a rest an my tea had settled I put on the hair treatment that I bought yesterday and had a bath and then Dad washed my hair. I spent the rest of the evening curled up on the sofa of the sunroom watching TV before retiring to bed.

My gratitude list list for this week is:
  • Mandy braiding my hair
  • My pen pals and PostCrossing
  • My carers
  • Chicago Med
  • My new weelchair
  • Lay-ins
  • Dad being free to take me out and spending time with him
  • Church and my faith 
  • Dad washing my hair

One Second Every Day - May 2018: Week 2


  • Monday 7th May - Today marks the start of M.E. Awareness Week, something close to my heart and a condition I battle with every single day, Had a bad nights sleep as they was a malfunction with the smoke alarm and it kept going off and it took Dad and Mandy a while to fix and I found it hard to get back off to sleep again. When I got up I did my usual routine but stayed in my pjs and watched TV and then when I had the energy I got dressed. By the afternoon my pain, headache and brain flog was flaring and I hadn't done much other than lay on the sofa watching TV and having a nap. In the later afternoon the sun was out so I decided to go and do some studying out in the garden in the sunshine where it was warm. That tired me out but it was enjoyable. Struggle the rest of the evening with low energy levels, brain fog and pain
  • Tuesday 8th May - Woke up more tired than I was when I went to bed so it was a high fatigue kind of day and struggled to stay awake most of the day. Made a call to my GP surgery and thankfully the referrals my rheumatologist requested have been made. By now I've learnt that things like that need chasing up as if I just left them at times they can go undone. Joint pain and headache flaring so went to bed for a rest and did some letter writing in bed to take my mind off things. Spent the rest of the evening on the sofa napping/resting on the sofa but struggled to follow what I was watching. Had an early night.
  • Wednesday 9th May - Another high fatigued day of doing very little. Had together up early as the OT (Occupational therapist) from Wheelchair Services was coming round; because of my seizures she's worried that in a more 'active' wheelchair that it could tip backwards more easily so she going to try and get me a more lightweight wheelchair than my current one which is quite heavy and causes my shoulders to dislocate sometimes, especially as I want to push myself to be as independent as possible. At 1pm my carer arrived and we nipped in the car round the corner to the postoffice to post some letter, though in my brain fog I forget to get stamps and cash out so as I type my stepmum is at the postoffice now for me. We got that out that out the way before I was zapped getting a shower. I had a lovely shower and washed my hair but I was utterly drained after. I had a fainting spell, probably from being so drained and from the heat too. After that I settled in bed and began to watch some Chicago Fire but I couldn't tkeep my eyes one so I gave into sleep and I began to have a bit of an 'M.E. Crash' so the light and nose was painful so I had a sleep int he dark and the quiet. After my nap I'd recovered a little though was still struggling but I didn't want to oversleep and so I rested with my laptop getting some blogging done and watching some of the last few episodes of Chicago Fire. After tea I came back to my dimmed room where I felt most comfortable and I managed to answer a few questions on my distance learning course as I have a deadline looming (16th). I got into my pj's early and took some extra pain relief to try and nip my flaring pain in the bud and settled in bed for another early night and washed some more Chicago Fire.
  • Thursday 10th May - Wasn't going to go to group therapy today but decided I could do with having the therapy and it was a fairly easy day. I was still really struggling and at times I don't feel that the staff truly understand physical health stuff and how much I have to battle through; especially on day like today. I took an artistic shot at lunch of my toast popping up for my one-second-every-day. When I got home I topped up with some more pain reflief (which I'd been doing all day) and just crashed on the sofa and had a nap. In the evening I painted my nails blue for M.E. awareness as someone I followed on Instagram was encouraging people to do something blue for M.E. I had a fall in the kitchen (my legs decided to stop working) so getting upstairs was a a bit of tiring ordeal as was getting into my pjs, to the bathroom and into bed but I'm here now. Dad's brought me the drink that I originally went into the kitchen for. Sadly in the fall I smashed my favourite tumbler cup so feel quite sad at the loss of that and frustrated with my body for falling and smashing it (and I thought using plastic was safe). After that it was bedtime with Stephen Fry reading Harry Potter to me as usual.
  • Friday 11th May - I struggled t get up this morning but managed it (little victories) and got myself dressed and breakfasted and Mandy dropped my off at group therapy. I managed better than yesterday though halfway though I needed to take time-out to go into the communal area and lay on the sofa for 20 minutes and take some pain relief and I feel like my hips where being drilled into. I then came home and got changed for a appt at the beauty salon where I had a nice massage which really helped with my pain and muscle spasms and general stress relief. When I got home I laid on my bed needing a recharge as I was feeling totally wiped. I spent the evening sorting out a few things on my blog and then watched a programme on TV with Dad and Mandy before heading off to bed.
  • Saturday 12th May - Woke up at 10am feeling more tired than I did when I went to bed but once I was up and had breakfast and got dressed I started to perk up a bit and not feeling too fatigued today. At about 11.45am my hairdresser came to cut and colour my hair and then I blow dried it a little which tired me a out a bit but not too much. I then spent the rest of the day making the most of the weekend. Mid afternoon pain and tiredness was creeping up so I went to bed for a bit and started on Chicago Med as I've now finished watched all 5 seasons of Chicago Fire. My pain and headache was increasing as was my hypersensitivity so I turned the TV down and put the subtitles on. In the end I resorted to taking some extra pain relief and I watched some more Chicago Med to distract myself.
  • Sunday 13th May - Didn't make it to church this morning due to my continued crash and I didn't want to risk falling ill at church or have a seizure. I went back to bed and woke up around 11am. I then got up and took my meds and had my breakfast and put on the TV and I got dressed once I'd woken up a bit more and just chilled on the sofa watching easy to watch TV. When Dad go back from church he helped me plant some of my native wildflower seeds in some pots. In the evening I had another faint spell; I spent a few moments recovering on the floor before Dad helped me up and I spent the evening laid on the sofa as I got dizzy every time I sat up. Mandy and I watched a couple of episodes of Desperate Housewives. I was still feeling dizzy so I had to bum shuffle upstairs to bed (thankfully I've managed the art of bum shuffling up and down stairs) and I got into my pj's and got into bed and did a few bits on my blog and then went off to sleep.

My gratitude list list for this week is:
  • M.E. awareness
  • The sunshine and being able to spend time out in the garden
  • Pain relief and access to medication
  • Spending time with Mandy

GUEST POST by Megan explaining what is Ehlers-Danlos Syndrome

As this month is EDS awareness month I thought I'd put together a post explaining what EDS is and how it affects its sufferers. As an EDS warrior myself this is a very important month for me as raising awareness is so important as this condition is rare and is often missed by doctors so patients often go undiagnosed for many years! EDS (Ehlers-Danlos Syndrome) is a rare connective tissue disorder that causes the body to produce faulty collagen. Collagen is the 'glue' that holds our body together and is found all throughout our body. In our ligaments, muscles, joints, organs, eyes... This faulty collagen weakens the tissue that supports the skin, bones, blood vessels, arteries, internal organs and more. There are 6 'main' types of EDS (these are the most common types). These are; Hypermobile, Classical, Vascular, Kyphoscoliosis, Arthrochalasia and Dermatosparaxis. Though I've only listed the names of 6 types of EDS there's actually 13 known types of EDS that have been discovered (so far) though the other 7 are extremely rare. 

For more information bout the different types check out Ehlers-Danlos Support UK here. Symptoms vary depending on which type of EDS you have and no two people have exactly the same symptoms but the most common symptoms are: hypermobile joints, soft velvety skin, easy bruising, poor wound healing, abnormal scarring, joint dislocations/subluxations, chronic pain, stretchy skin and many more. Common comoribities are; Chiari Malformation, TMJ, PoTS, Dysautonomia and Craniocervical Instability.



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Sunday, 20 May 2018

GUEST POST by Jodie for Mental Health Awareness Week

Mental health is not a joke. It isn't something you can pick up and drop like a toy. Mental health is serious, people die from having mental health illnesses, suicide as the cause of death and many people die from eating disorders. Mental health is not a phase that someone will simply 'grow out of' it is not attention seeking nor is it fashionable. You can't just 'snap out of it'. Wouldn't life be so much easier if people could do that? 

I have suffered from mental health myself since I was younger. The past 11years have been horrendous in and out of hospital admissions and under the care of child and adolescent mental health workers then transferred to adult mental health workers. The past 6 years I have spent under a section 3 in hospital. Which means I have to stay in hospital against my will for treatment. Over the past 11 years I have had many mental health illnesses such as anorexia nervosa, anxiety disorders and psychosis. I have more diagnosis' now. Spending time in hospital can be and is very hard to be away from my family and friends for such long periods of time. 

I have experienced the worst (of mine) mental health and have seen the worst in other service users. It can be a very scary situation to be in, not knowing what could happen next. As is with anything in life mental health has its ups and downs, you could say it's like riding an emotional roller coaster. Mental health is so difficult for some to understand and some are even scared to know about it. Together we need to make this invisible illness seen. Mental health isn't all about feeling sad and self-harming, yes those are aspects sadly do exist but it is so much more than that. I have had friends walk away because of me being unwell and I still don't know why. I'm not angry at them though. I have made some incredible friends, true friends in my time in hospital that I shall cherish forever. 


Life on the ward is pretty hectic at times. I have seen life threatening self-harm and have lost family and friends to suicide. It's a long road to recovery, each person is so individual it may take one person 3 months to recover others it could take years. It isn't as easy as 'just get out of there' or 'snap out of it' I wish it was. If that was the case nobody would be ill. 

On my bad days which are often I wish I wasn't alive but on my good days I see a bright future. My thoughts are with those struggling in the community. I know from experience the mental health teams and crisis team aren't very good. Which leaves patients and carers with no hope. 

I hope people who read this gain some hope as I can honestly say things do get better. Yeah you will make it through. Recovery is possible. As I always say "this too shall pass".

Thank you for reading this. To anyone suffering and carers too there is a light at the end of the tunnel. There is help out there and you are not alone. 

Saturday, 19 May 2018

GUEST POST by Nicole for Mental Health Awareness Week 2018

14th May 2018 marks the start of mental health awareness week, a week dedicated to raising awareness of a very un-talked about, hidden away subject that will affect us all at some point in our lives. Whether it's ourselves affected or someone we know who's live is impacted by mental illness this week is dedicated to destroy the stigmas attached to living life with a mental health problem.

In the UK alone each year 1 in 4 people will live alongside a mental health problem. I am part of the 1 in 4 statistic.

Many mental health problems exist. There's more commonly talked about ones such as: depression, anxiety, obsessive compulsive disorder, bipolar, schizophrenia etc. However, there's also less commonly known about ones such as: seasonal affective disorder, dissociative disorders, somatic symptom disorders, psychosis, borderline personality disorder etc.

I personally live with 'somatic symptom disorder' - (I have psychosomatic vomiting and pain); social anxiety; depression; panic attacks; and dissociative attacks where I hallucinate and become disorientated and confused.

Mental health problems are scary to live with! You spend your time living with a lot of unanswered questions and unknowns. Mental health problems are not a joke despite what modern society often leads us to believe. Mental health problems follow you wherever you go. Someone living with depression still has depression in spite of them smiling through the day, someone living with anxiety still lives with anxiety despite them speaking in social situations, someone living with an eating disorder still lives with an eating disorder in spite of them eating, someone living with paranoia still lives with paranoia in spite of them trying not to let it interfere with their relationships etc. You cannot just up and get on with it, leaving your mental health problem behind.

People view mental health problems very differently to the way physical problems are viewed however mental health problems affect nearly all of us at some point in our lifetime and in a lot of ways affect more people than physical health conditions. You wouldn't say to someone having an asthma attack "cut it out and just breathe for crying out loud!"; "I understand that you can't stop vomiting but you just need to make an effort with your life!"; "Have you ever tried just not having cancer?" but some how it's okay to tell people with mental health conditions to just "get on with it" to make them feel like they're not even making an effort to live their life or speak about their condition as though it were as simple as not speaking about the condition anymore and it'll disappear.

We all deserve to be listened to when we are struggling with our mental health. We all deserve to have someone we can turn to say to them "I'm really not okay". We shouldn't be made to feel ashamed because we're struggling. We shouldn't be made to feel crazy because we are living with something out with of our control. If those suffering with mental health conditions could they'd chose not to have the condition but it's not a choice.

Friday, 18 May 2018

Paramedic Call-out

So yesterday at my group therapy I went into a prolonged status seizure episode. During my tonic-clonic seizures I am totally unconscious; unaware of what is going on around me and unable to communicate in any way.

After about an hour of me having on/out for tonic-clonic seizures with full body myoclonic seizure activity in-between (this is how my status seizures present) the staff decided to call for an ambulance. Whilst we was waiting for the ambulance to arrive I started to come round a little though I was still very confused and in a heck of a lot of pain and was a bit sick. As soon as the ambulance crew arrived I started from the outset that I would not be going to A&E due to how poorly I am "cared" for there. 

My blood sugars was a little high for me - double what they normally are and my blood pressure was a bit low and my temperature was up and trying to decide what to do. In the end the paramedics agreed to let me have some Entonox to ease the pain on my dislocated shoulder and subluxed hip. Entonox isn't a magic cure, it helps the pain but it wares off the minute you stop taking it, but for me it can also ease my spasming as although my tonic-clonic seizures was waring off I was still in full body myoclonic seizures but conscious and it did help for a little while but there was no real care plan other than A&E or leave me and present at A&E later if things continue (which would be unlikely as severe as things could have gotten).

Entonox was all the crew could really do and they wasn't a paramedic crew either so they was limited on what they could do other than take me to A&E which I was adamant was not going to happen. I took some of my own oramorph which I carry on me for occasions like this and stayed on the Entonox until it kicked in and the crew filled in the necessary paperwork. Ideally I know I should have gone to A&E but I'm not putting myself through the hell that I usually receive when I'm there. So the crew left and I managed to get home and went strait to bed and curled up and watched some Chicago Med as a distraction and I kept topped up with pain relief. 

It's really upsetting how I know A&E will treat me because my main illnesses are 'functional' and at times clinicians don't even believe me to be ill at or or that I'm feigning and refuse to treat me because I have a 'functional' condition.

More education and awareness is needed to understand FND and to see how serious the illness is; that in reality FND can be as severe as MS and Parkinson's*. For me my FND symptoms including my seizures are relentless and very restrictive and at times severe.

FND symptoms are poorly understood and can be debilitating. -Dr. Jon Stone

Today I've still been in quite a bit of pain but I couldn't have a lay in because I had to be up for my new wheelchair delivery (I've got a more lightweight one now that should be easier to push more independently)

References:
* FND Hope 

Today I am grateful for:
  • The care of the staff at the TC
  • The paramedics looking after me and listening to me

GUEST POST by Laura for Mental Health Awareness Week

Let's Share Positive Experiences, too!

We've all heard the horror stories (which are, sadly, true in most cases) about the failings of the mental health system in the UK. I absolutely agree that there is no physical  health without mental health (and vice versa), that mental health problems should be taken equally seriously as physical health problems, and that waiting times, the concept of ‘not ill enough', and this most recent get-out clause of ‘positive risk' should all be addressed and managed. There's plenty I could write about how BAD the mental health system is, and how people have been let down. I could EASILY do that, and, in fact, have done many times in the past, but for Mental Health Awareness Week this year, I thought I'd take a different angle  and emphasise the importance of sharing GOOD experiences too.

Anyone that's had contact with mental health services on any level can probably tell you a negative story, and it's important to share and expose the failings, but, as humans, we have an inherent negativity bias, meaning that we tend to remember the bad experiences (the time the Crisis team told you they were ‘too busy' to see you, or the time you were left waiting in pain in the A&E waiting room, for example) much more readily, and with greater intensity, than the good ones. Sometimes it feels as if the good experiences whilst navigating the ‘system', and fighting for help, are few and far between, but they are there, even if you have to look really hard!!!

And why, you may ask, should we go to such effort to find positives when there are so many negatives? Well, for one, it helps us to feel more positive about our experience, just by identifying a few small positives and noting them down. If you like things nice and ordered, like me (!), you could take the challenge to note down a positive every day, just to remind yourself they're there. But it goes beyond that. People expect to hear negative experiences, they're used to the media's dramatic headlines and shock tactics. What they're not used to is ‘average' people struggling with their mental health telling them the ways mental health services have helped them. It's unusual, but so reassuring, to hear about people who felt well supported by their Crisis team, felt an acute hospital admission was helpful, and who feel they are recovering or managing their mental health. I know that when I share positive experiences, I feel better afterwards than when I share bad ones, but this is true tenfold when hearing from others. Hearing that a service or individual has helped someone gives me hope. It stops me losing all faith in a mental health system which is doing its best with a 20 tonne weight on its back, and, in turn, helps me not to lose all faith in my own potential recovery. It's inspiring to hear how, with a lot of their own hard work  people have been able to use inpatient an/or outpatient services to move on with their lives. If other people can do it, so can we. People do get better and move on with their lives. Mental health services can help, and there is hope for everyone. 


So let's share our positive experiences too. What if we can help or inspire someone else? It's important to flag up badly done things, and to fight for quality care, but that doesn't mean there's no room for positivity alongside that, and it can only be a good thing to encourage sharing, validation, positivity, recovery...

Thursday, 17 May 2018

GUEST POST - Jess's Poem about BPD for Mental Health Awareness Week

I wrote this poem in response to reading an article about how "therapists don't like people with BPD*". It pulled quite a few heartstrings, and made me fear that stigma is not only with people that are unaware of mental health conditions, but also those who treat it. It triggered a great deal of fear for me, personally. The poem is meant to highlight that everybody is individual, and the fact that articles like this exist is very, very scary.

Attention seeker?
Truth speaker.
I don't want your sympathy;
How about listen to me.
Impulsive behaviour,
There is no saviour,
Only myself.
But I'm left on a shelf 
Inside a book that is titled 
Borderline personality disorder.


Labelled as a challenge, 
Unrealistic expectations.
I can tell you my expectations, 
You're going to open the book 
But you'll be mistook,
I am not the labels you put on me
I am me.
But hopefully you'll see
I am scared
But I have reason to be.
______________________________

*BPD is short for Borderline Personality Disorder, also know as Emotionally Unstable Personality Disorder (EUPD). To understand more about BPD/EUPD check out these helpful sites: