Friday 31 May 2019

A post to end May

So May has been a busy month for M.E., mental health and EDS/HSD awareness and on my blog I've had lots of posts and guests posts covering all of the awareness events. May is also especially important as I have been especially important to me as I am affected by all three.

Guest Posts

It's been great to have so many great and varied guest bloggers write for me this month sharing their story to help raise awareness and understanding.

A big thank you to everyone who did a guest blog for me.

Awareness Raising

I've also shared my own experiences in blog posts as well as working with different charities. I made a video 'M.E. and Me' for Action for M.E. and my story also featured in the special edition of The ME Show entitled 'The Real ME'.

It's been great to get back into my campaigning work and also to use my experiences to help raise awareness and understanding. I'll defiantly be looking out for opportunities for next year, especially to raise more awareness of M.E. and HSD which are less understood.


Rather than doing a traditional blog post it was interesting to do the #meandmyME challenge as a way of sharing about my life with M.E. and it covered different topics and it probably enabled me to share more than in a blog post, plus it gave me new ideas and topics that I wouldn't have thought of to write about. It's was by @spoonie_village. It was one they did last year but I didn't find out out about it until after May and I've just found one that they ran this year so I'm thinking of doing that one for next year as it was interesting and different to do. They did run it as an Instagram daily photo challenge but I chose to do it as a blog post instead. 

Just a brief explanation... 

Myalgic Encephalopathy

M.E. is a multi-systemic (meaning it affects the whole body) neuro-immune disorder. It has many different symptoms, some are constant and some are episodic. and the severity varies from person-to-person. M.E. is much much more than simply 'feeling tired'.
Each Sunday I've published a post #meandmyME where I've spoken about different aspects of my life with M.E. It's a really difficult illness to live with as I can't my days or even hour-to-hour. I constantly feel like I have the flu and sleep doesn't make the fatigue better and you often feel like your limbs have been turned to lead and you can't think straight along with many other symptoms.

Mental Health

I've struggled with my mental health more of my life than I haven't. It began with depression and then I developed Anorexia and spent several years in hospital and I now also contend with Complex-PTSD.

Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorder

HSD which again is pretty complex. HSD is a hereditary connective tissue disease. HSD is also multi-systemic can is caused by faulty collagen which is basically like the glue of the body holding all the organs and joints together. So because it's faulty it causes organs to become too stretchy and not work as well and for joints to become lax so they more easily sublux and dislocate. It affects the skins so it stretcher and injures more easily - I can't remember the last time my skin was free from bruises, cuts, scraps, scars and stretch marks. Veins are also affected as they're stretchier too so it's hard to get IV access and often I feel like a human pin cushion.

GUEST POST by Emma for EDS/HSD Awareness Month

Photograph of a young woman in a hospital room. She sat up in a hospital bed, she is caucasian and has light brown hair and is wearing a burgundy t-shirt and has a checked blanket over her legs. She is holding some flowers and above he is a Hello Kitty balloon.Hi, I’m Emma,

I just finished junior year of high school, and most would say I live a relatively “perfect” life as viewed from the outside. However, I struggle on a daily basis with several invisible illnesses. I have a disorder called Hypermobility Spectrum Disorder (HSD), which is a connective tissue disorder caused by defective collagen production. It’s very closely related with Ehlers-Danlos Syndrome, specifically the hypermobile type. This condition has been the root of my other conditions as well as issues that remain undiagnosed. 

For me, HSD has caused: Dysautonomia (dysfunction of the autonomic nervous system causing heart problems, body temperature problems, blood pressure problems and more), Severe Pelvic Floor Dysfunction (the improper use of the Pelvic Floor Muscles), Gastrointestinal Dysmotility (the slowed movement of food and other materials through the GI tract), Vocal Cord Dysfunction and Asthma. 

The hardest part of having HSD is often feeling overlooked, because you don’t have an EDS diagnosis and many clinicians aren’t aware of the spectrum of hypermobility. Personally, I experience symptoms everyday, most prevalently joint dislocations and Dysautonomia symptoms. 

My medical conditions often dominate my life. My day is consumed by taking several medications and vitamin supplements as well as a rigorous eating and drinking schedule to try to increase my weight. I often have several appointments a week, usually for physical therapy. 

Though all of this can be overwhelming, it’s taught me a lot. It’s taught me the value of a positive attitude, and most importantly it’s taught me to be grateful and cherish everything I have. Of course, sometimes it’s really hard. There’s been some really dark times during hospitalizations and tube feedings especially, but I made it through them. Now my goal is to slowly strengthen my joints and get myself back to living a normal life. In the meantime, I’m going to continue advocating for those with invisible illnesses and enjoying life as much as I can.

#meandmyME Week 5

Monday 27th May // Day 27: Rest

Most of my days are spend resting in some way or another and despite resting I'm still tired. I refer to this as 'sofa bound' - I probably spend about 95% of my day on the sofa or my bed, though I try to leave my bed for longer rests, napping and sleeping (but sometimes I need to spend all day on my bed).
Rest is really important. It helps me get through the day and to be able to function (just about) the next day. 
After every task I rest. Pacing plays a huge part in this.
If I have something big the next day or two, such as needing to go out with my carers to run errands, appointments etc I have to rest otherwise I'd crash and the PEM will be even worse.
Basically resting is really important when you have M.E. or any illness that involves chronic fatigue.

Tuesday 28th May // Day 28: inVISIBLY disABILED

The vast majority of the time I am invisibly disabled when it comes to my M.E. You may see me sitting or laid down but you don't see the pain or me fighting to stay awake or the chronic migraines and all the other symptoms that I'm dealing with at that moment in time. 
I wear tinted lenses (which people often mistake for me wearing sunglasses), due to photosensitivity/photophobia and migraines, but you don't see why I'm wearing them.
When I'm on my laptop blogging you don't see all the concentration and brain fog and that when you read a post you don't see that it's taken me days or a week to write. (I started this #meandmyME last year and I've been adding to it bit-by-bit).
If I'm out and about you'll see me with my crutch holding onto someone's arm, or more often now in my wheelchair; then my invisibleness becomes more visible, but that's only the tip of the iceberg. Even in my wheelchair you can't see all the invisible M.E. symptoms (or the other illnesses I have). 
It can be had having inVISIBLY disABLED as you feel like you have to constantly make the invisibleness visible such as when I first got ill trying to get a seat in the priory seating or assistance at the train station, (I no no longer use public transport), but I've now learnt that I don't have to do that. If people don't understand or can't "see" my M.E. (or other illnesses) then that's their problem and not mine; I don't have to justify myself to anyone and neither should anyone else with an invisible disability. 

Wednesday 29th May // Day 29: M.E. hasn't stopped me

M.E. hasn't taken away my hope of going back to University, and one day becoming a Child Psychotherapist, it's just that my life is on hold whilst I get well enough.
It hasn't stopped me from studying, I've done an online art foundation course and I've been doing home distance learning courses.
I've had to adjust such as I can't do as much active volunteer or campaign work but I can do a little online or over the phone.
Even though I can't get out an meet people in person I still "meet" people and have friendships through letters.

Thursday 30th May // Day 30: Quotes/Words I live by

'Carpe Diem' - seize the day, which for me is making the most of the day and achieving as much as possible, whether it be read a module of my distance learning work, or just enjoying my carer braiding my hair.

The Harry Potter books are filled with inspirational quotes; a lot of which come from Albus Dumbledore.
"Happiness can be found in the darkest of times, only if one remembers to turn on the light"
There's also an art film called 'Impossible Shoes' and I love all of the lines in that, but there's one quote from that that I like especailly... 
"There are things that are possible
Things that are impossible
But otherwise, 
I think that within my restrictions, 
Nothing is impossible
Imagination is another name for absolute power"

Friday 31st May // Day 31: If I could tell you one thing about M.E....

That we're all a piece of cake and only on portion of that cake is our disability/chronic illness (M.E. in this case) but there's so much more to use than our disability/illness and it's about finding yourself among that even when you feel like you're M.E. has taken over you.

Thursday 30 May 2019

GUEST POST by Lucy* for EDS/HSD Awareness Month

Over the last 2 years I would say that my health has deteriorated. One of my biggest fears is that this will continue over time and I will get to the point where I end up having arthiritis in my older years. I fear that one day I will loose my mobility completely to a point I need a wheelchair or a walking aid full time. I know people will always say 'oh it won’t get to that', but in all honesty nobody actually does know. Only recently I genuinely could not move any part of my body because I walked for 1 hour the day prior. Obviously I hope it doesn’t come to that but it does play on my mind. Especially after seeing and speaking to others who have similar Hypermobility experiences who are in wheelchairs etc it is so hard to not think otherwise.
Another fear I have is missing a bigger illness. I experience so many random pains and aches everyday. I get new pains all the time, looking back a few years ago I never had fluid in my knees, consistent lumbar back pain, swollen hips but I do now. What if a bigger illness comes about but I do not notice it because I think its part of my hypermobility?
Lastly my other fear is going through pregnancy. I have heard so many bad experiences. With back pain like this imagine what it will be like through pregnancy when it is supposed to be bad. Imagine what my already swollen feet and swollen knees will be like when you are pregnant and those symptoms are supposed to happen. What would I do without painkillers, I think I will probably cry everyday. How can something that is supposed to be so special and exciting be so scary and nerve-wrecking.
From, Lucy* aka @hypermobility_ 

Spread Your Wings - May Birchbox

This month's Birchbox was called 'Spread Your Wings'.
Inside was...

Lord & Berry

Ultimate Lip Liner in Vintage Rose

This is a water resistant long-wearing lip liner with a creamy formula and can also be used as a lipstick.

Through Birchbox I've come to love this brand. The lip liner goes on so smoothly and is really easy to apply and is a lovely shade.

It's only been since I've been getting Birchbox's that I've expanded on what makeup I use. Before I just stick to lipgloss but now I have such a range of lipsticks, crayons, lip inks etc in all sorts of shades to go with different outfits and makeup looks.

Full size
RRP £13


Sakura Hand Balm

Like with Lord & Berry since getting Birchbox's this is another brand I've come to love and I've even treated myself to a few of their products as they just smell amazing.
This is a new scent of the Rituals range and like their other products it smells lovely and it makes my hands feel amazing too.

Full size
RRP £9.90

Beautaniq Beauty

Nourishing Mascara

This mascara thickens, lengthens and brings volume to lashes and nourishes them all at the same time.

I've already got another mascara on the go at the moment so i've put this aside for when I need it.

Sample size
RRP £12


Face Sunscreen SPF 50

Not only is this a sunscreen it's also packed with anti-oxidants and Vitamin E to hydrate and protect your skin. It's got a lightweight formula to leave skin feeling velvety soft.

I've not used this product yet but hopefully when the weather gets nicer I can pop it on and get out in the garden and enjoy the sun and summer and hopefully get a bit of a tan whilst protecting my skin.

Sample size
RRP £17.50

Philip Kingsley


This is a pre-shampoo treatment which adds elasticity, hydration and shine to hair and tames it to be more manageable and reduces breakages.

Using it it really has strengthened my hair and made it shinier and more healthy looking.

Only downsize was even though this was full size I probably will only get about 4/5 washes out of it when you have long and thick hair.

Full size
RRP £9.50

Wednesday 29 May 2019

One Second Every Day - May: Week 4

Monday 20th May

Had my Monday Bluebird visit. My carer's just been on holiday so we laughed at how pale my skin was compared to her tanned arm.
I got carried away on my laptop and forgot my meds review appointment at 3pm, though my care co did feel at fault for not reminding me, plus I'd forgotten to set my usual reminder alarms. Hopefully I won't be waiting too long for a new appointment.
Dad's away this week on a school residential trip.
This evening my step-mum and I wanted a film 'Invasion of the Body Snatchers'.

Tuesday 21st May

Mix-up with Bluebird - I was meant to have my usual ½ hr call but there was some sort of error with he rota so it's been moved to tomorrow.
This afternoon I had an acupuncture session at Orchard Barn.
The rest of the day was spent just resting on the sofa.

Wednesday 22nd May

Had a ½ hour call with Bluebird. My carer brought me an early birthday present which was an indoor flower plant in a flamingo shaped pot which I love. This brings my plant collection to 14!
I did my makeup and my friend called me for a quick chat.
It was then time to leave the house to get myself to the GP practise. I meant my advocate there as it's my new GP and I just wanted her support.
My new GP seems okay; better than my old GP. He was honest with me which I like and he wasn't dismissive and he seemed clued up and explained things well and he seemed friendly and supportive and he's going to keep in regular touch with me which my old GP never did and even though local support services don't exist which we both agreed upon and how I sort of fall between the gaps as I'm not end-of-life but I'm not temporarily ill and then there's noting for the illness that I have, but he's going to have a think and a search to see if there is anything for me.
After my advocate and I had a chat about what I want her to say on my behalf at the professionals only meeting the Complex Care Team is having about me. (Not really following person-centred care by not inviting me along.)
I'm now just resting watching TV and doing some colouring.
This evening my step-mum and I went to a friend of Dad and my step-mum's from church to watch a film as we didn't;t have a blue-ray player.
I'm now exhausted and ready for bed.

Thursday 23rd May

Had Bluebird this afternoon. First off was an ECG with the nurse at the GP practice and then home. I tried out a new facemark which I got in my Birchbox a few months back. We had a giggle at how I looked but my skin felt lovely. It was nice to have a little DIY facial.
I had a prolonged seizure and my carer ended up having to call out the paramedics. I managed to avoid a trip to hospital. My Uncle came over and sat with me for a few hours and then he left me to sleep on the sofa.
My body is still in a lot of pain, especially my hip. I hurt my hip at the weekend during a fall (queue another paramedic crew) and the seizures just flared that up.
Dad's been away this week on a school residential holiday (he's a teacher) he called me at bedtime and it was nice to talk to him and be honest with how I'm feeling and how I'm struggling.
To be honest my mood has been really low this evening and I ended up calling the crisis team. I'm just hoping my mind can switch off so I can get some sleep.

Friday 24th May

My hip is still painful today. So far I've spent a bit of time on my laptop and done some college work and I washed my face and used some of my things out of my Birchbox's. I'm trying to get into the habit of asking my face each day.
I've also spoken to my care co-ordinator and my advocate as there was a 'professionals only' meeting about me today wit the Complex Care Team (bit miffed I wasn't invited).
I'm now just taking a break from college work to do some mail.
Just about to head to bed. I've spent today going between college work and letter writing as well as resting. I've hardly watched any TV, and I saved some energy to tidy my room (though I still have a pile of laundry to put away). It feeling a productive day despite the pain, but to be honest it's been a good distraction.

Saturday 25th May

Not  much of an interesting day. Flop got cleaned out and he had a good munch on the grass. I'm really into audiobooks at the moment and it's nice to plug my headphones in and close my eyes and zone out. I also wrote some PostCrossing postcards.
My step-mum was working this evening so it was just Dad and I so we watched a film, well, we got halfway through and hen at 9pm we started to get tired so I got myself up to bed.

Sunday 26th May

Having a bad M.E. day though not sure what's brought it on. 
To get some darkness I went and laid on my bed and had a deep rest. I put my headphones and an eye mask on and listed to a book for quite some time. I then thought after several hours that I'd try and make my way downstairs and onto the sofa, but 5 minutes into my programme Dad and my step-mum wanted the TV. I tried laying on the sunroom floor (I could't handle being upright for too long) plus it was too bright so I went to lay on the sofa (well, it's a sofa bed and its been converted into a sort of second lounge come laundry room) in the back bedroom. I was going to watch Chicago Med but when I put the TV on the first Harry Potter film was one so I dozed and watched that.
I've spent the rest of the evening watching TV apart from eating. I came to bed and listened to a new audiobook. I keep meaning to find some new podcasts.

Video Description

  • Monday: photograph of my pale arm next to my carer's tanned arm
  • Tuesday: opening up a section of my alarmed pill box
  • Wednesday: view of my GP practise waiting area. A large atrium area.
  • Thursday: Colouring in a postcard picture of a cats with a dark brown pen.
  • Friday: Spooning coffee into a pink cup
  • Saturday: View of the garden from where I was sat and Flop on the lawn munching grass.
  • Sunday: Turning on my headphones and lights coming on.

Monday 27 May 2019

GUEST POST by Natasha for EDS/HSD Awareness Month 2019

A caucasian woman with gold earrings wearing a long dress. Either side of her are two children. The the left is a girl wearing a pink dress. To the right is a boy with glasses, a blue shirt and green trousers.

Hi there, I’m Natasha and I’m really excited to be doing a guest piece today on Hypermobility...

I have other conditions: Endometriosis, Adenoymosis and Functional Neurological Disorder.

Growing up I was always extremely flexible and I was simply told I was double jointed and even though I would have a lot of pain in my joints which as a child even kept me up at night, it was never investigated properly. As an adult I started experiencing other problems which are also related to hypermobility such as IBS, bruising easily with thin skin, and of course, dislocations which resulted in regular tears of ligaments and tendons and finally led to the official diagnosis of Hypermobility Spectrum Disorder (HSD). 

The sports I played as a kid were mostly team sports and I remember always having these problems where I had weak ankles and they’d simply bend the wrong way, everyone would think I’d broken it, it would kind of pop and I’d be able to carry on although I’d be very swollen and bruised and told “it’s just a sprain”. I started learning to live with the feeling of just being in pain. My main joints dislocating at this point were my ankles and hips. 

As an adult I then continued with netball and later took up CrossFit. At one netball game I had a particularly bad fall which resulted in a hip dislocation, ankle dislocation which tore the main ankle tendon as well as some ligaments. My ankle never truly recovered from that and still to this day is extremely swollen. Even at this point I was brushed off for my pain in my joints and range of movement until a physio pointed out that my range of movement was beyond what he would consider ‘normal’ and prompted a doctor to run tests and finally diagnose me. CrossFit was probably not a good choice of sport for me as I pushed myself too hard, and due to my lack of stability in my joints combined with such high weights I experienced so many injuries, shoulder dislocations, hip dislocations and even ribs dislocating from my spine. Also, while pregnant it resulted in major pressure on my hips which dislocated so frequently I was bedridden from around 5-6 months pregnant with my son. 

Now, although these problems on their own are really awful, what it meant for me is that from enduring this pain from such a long age and telling myself it was nothing to worry about and effectively ignoring my brain and reinforcing that it wasn’t doing its job properly (this is the likely contributor) to developing Functional Neurological Disorder. Basically my brain doesn’t know how to respond to basic senses and creates pain to almost any stimulus. Unfortunately it also comes with Dystonia which are basically where my limb seized or contorts into shapes which lock hard. The bigger problem for me is that due to my hypermobility it allows my joints to sometimes be pulled out and dislocate. 

So how do I fix my hypermobility?

Well, there’s no fix. This is one of those conditions which are ‘managed’. Before I developed FND it was managed through controlled movement and exercises under the guidance of a physiotherapist. The aim was to teach my body to move within the more ‘normal’ parameters like other people where I would have more control and not push beyond that where I would experience dislocations. Of course there are also pain relief medications, however for me, as this is a lifelong condition which I need to manage, I’ve found alternative ways to manage the pain I experience such as meditation and brain training. I have found some apps for meditation and brain training, unfortunately none are completely free, however, I have found some which are cost effective such as the curable app. I do also still see a physio to make sure my movements are becoming stronger and with the correct movement patterns and control. 

Sunday 26 May 2019

#meandmyME Week 4

Monday 20th May // Day 20: Current view

This is the view from my bed as I'm summoning up the energy to try and get out of bed in the morning. I'm slowly elevating myself upright so I don't have a POTS fainting episode using my electronic mattress elevator (my favourite gadget from my OT) and I have things to hand such as my laptop and iPad, medication, baby wipes and then on my bedside table I have a tumbler of juice and snack bars should I be too unable to get downstairs to the kitchen and a box of other medication e.g. migraine meds, anti sickness meds, inhalers etc. The blinds are still closed hence why there is a pink haze and putting any light on is too much for me.

Tuesday 21st May // Day 21: Assessments (of any kind)

In January I had an updated home Occupational Therapy assessment which led at my house and any difficulties I have within the house and putting inlace any aids or adaptions to help make things easier for me. From that I got a mattress elevator which allows me to sit myself up and lay myself down much more easily. I also got a bath lift which as a lift does it lowers me into the bath and raises me up (though it doesn't magically get me out of the bath).
I've also been struggling and trying and failing to get assessments to help me get a care package so one day I can move out and live on my own.
I also have routine assessments like medication reviews and blood tests etc.

Wednesday 22nd May // Day 22: Help

My Dad helps me out a bit such as if I need an arm to steady myself when walking, preparing and helping me take my medication, washing my hair for me, cooking, helping me up when I've fallen etc. 
I also have carers which help me with anything from personal care to helping me with my my medication, to running errands or going to appointments or just going out for tea and cake.
(I can't leave the house alone so being able to leave to house with my carers for a couple of hours a) makes me feel safe and b) it enables me to leave the house and get a change of scenery and gives be back some independence).
My my wrist I also have something called a CareLink which has an impact detector so if I fall it set off an alarm or I can press the button and it will put me through to someone and I can talk to them and then can arrange for help to come round if need be or call my Dad or Mandy to let them know if I've had a fall etc.

Thursday 23rd May // Day 23: When I wake up

This is usually a drawn out process.
My first alarm goes off at 9am (earlier if I have an appointment, but I try to get appoints in the afternoon). I then lay in bed for a while trying to wake myself up. I take my 9.40am meds then my 10am meds. After my 10am meds I aim to get out of bed. With my mattress elevator I slowly sit myself up so my dysautonomia and POTS can adjust itself and my tachycardia and low blood pressure from going fro lying it sitting up doesn't get set bad.
I then get up, shuffle downstairs and get some breakfast. I then have a rest and watch TV or go back to bed

On a bad day I just stay in bed, I may have the cereal bar I keep next to my bed I'm I'm feeling okay, then I will just go back to sleep.

Friday 24th May // Day 24: Coping/Support

Living with M.E. is really difficult and because of the isolation you don't have a wide range of people in your life. You have good and bad days emotionally with your resilience.
My Dad is supportive, I also have my pen pals and my faith.
To help cope I have things that distract me and things that I find soothing.

Saturday 25th May // Day 25: Big wins

I think my biggest win since becoming ill (even though the M.E. wasn't diagnosed when I first started) was completing my home study Foundation Diploma in Art & Design which will really help me when I'm well enough to go back to University as I now have a balance of art and science based educational qualifications.

Sunday 26th May // Day 26: Describe M.E.

Describing M.E. is really difficult to sum up. Living with M.E. is life living with your life on pause and you're just waiting for your life to get back on track.
You're tired all the time but sleep doesn't make it any bette, but you need to sleep and nap and rest a lot. And when you're tired your brain is all foggy and you can't remember things and it affects your thinking and you can't process things is and everything is slow. And because of the brain fog your brain losses track of things. 
But even when you're exhausted you get insomnia at night and if you do manger to sleep well you wake up feeling unrefreshed.
Sometimes even just lifting your head is too much effort.
And your muscles really hurt really badly. 
Then you get this pressure in your head so you get headaches and migraines a lot. 
Sometimes it's like being really really drunk.
Because M.E. is episodic you can't predict how you will be to an extent. Like you know you'll have PEM but you don't know how bad the payback will be. 
There's also the hypersensitivity. Light and noise are painful - even the sound of your own voice is too much sometimes; smells can trigger migraines, and one bad days even just gentle touches like my duvet hurts. So sometimes you have to lay in the dark and silence.
Walking is difficult, it's too tiring and painful sometimes and it takes too much energy.
You need to be really careful not to do lots of things. You need to be really careful and do one thing and rest.

Friday 24 May 2019

New GP and Complex Care Team

I was having a heck of a lot of issue with my old GP which I didn't feel able to voice and issues mounted up.

Then I got an independent advocate and I was finally able to feel like I had a voice about my care and what was and wasn't working.

My advocate arranged a meeting with Practice Manger of my GP surgery and it was a really positive meeting.

The Practice Manger was going to investigate a few things and I also swapped to a different GP. 

New GP

This week (Wednesday) my advocate and I went to see my new GP; even though we're still getting to know each other my first impressions where good. I felt listened to, he was honest with me, he explained things to me, he wrote things down for me. He explained that unfortunately we lack services locally, which I already kind of know and he said I sort of fall through the gap as my health isn't temporary but I've not got a terminal illness so I'm not eligible for hospice care even though WHO (The World Health Organisation) has changed the definition of palliative care from is just being terminal; end-of-life conditions but to now include serious chronic illnesses.
"Traditionally, palliative care towards the end of life has been offered mostly to cancer patients, but must now be offered for a wider range of serious illnesses" - WHO Palliative Care
But my GP did say that he would have a look to see if there was anything out there for me and he would also read through my notes so he can familiarise himself with my case. 

Unlike my old GP who just sort-of left me my new GP now want to see me every month for half-an-hour to catch-up and keep and eye on things and see how I am.

Hopefully as we get to know each other I hope I will start to feel more supported from a primary care level and it will mean I will get some care in-between my London appointments.

Complex Care Team

A long while ago I was referred to to Complex Care Team and very little happened. When my advocate got involved, like with my GP, she stated to get my care sorted and moving. After that I spoke with my key worker twice and she organised a MDT (Multidisciplinary Team) meeting. Usually with them I'm invited but today was a 'professionals only meeting'. 

My advocate could only briefly update me as she had another meeting but they're going to have monthly meetings to keep my care flowing and hopefully they can arrange it so my new GP can attend the next meeting.

The GP practice is going to call me every week to see how I am and my mental health care co-ordinator is going to call me weekly too.

They're also going to keep in regular touch with he euro rehab centre in Leeds to ensure that I get an assessment for there as soon as possible and then they will mean they can start arrangements for getting me a bed (but I'm trying hard just to take things one step at a time).

Also, they're going to start arrangements for putting together an Advanced Care Plan for me, so when people like the paramedics turn up, or I go into hospital there's detailed instructions of what needs doing and how best to care for me and my care needs and wishes.

GUEST POST by Kate* for EDS/HSD Awareness Month 2019

My dad has always been my hero. 
Every night I cried out in pain, he was there, with my hot water bottle and hugs.

I think this is my earliest memory of my symptoms, but my parents had shared concerns about my joints with doctors as soon as I was born. My shoulders were strange, and I always had pain in my legs and back. Of course, they were told I was fine, "it’s just growing pains" etc.

Growing up I performed my party tricks to everyone. My fingers could bend all the way back and I’d pop my shoulders out. "Ewww gross" people would say. I quite liked being a bit different.

At 18 I had agonising pain in my side, and my rib was sticking out. After a bone scan I was told it was just extra cartilage, nothing to worry about. 12 years later it's believed I actually have scoliosis.

I could list countless, missed opportunities for a diagnosis, but that would go on forever!!

It wasn’t until I was in my late 20s that I began my own research. Things just weren’t right. I had multiple diagnosis from adenomyosis to lymphocytic colitis, and I was in constant pain. I just couldn’t understand why I had so many issues. Then I stumbled across an article about Ehlers-Danlos Syndrome, it quoted ‘If you cant connect the issues, think connective tissues’. Lightbulb moment!!

It was a perfect fit! Joint issues, gastrointestinal issues, gynaecology issues etc. I cannot express how happy I am that I had found this! That was when the second leg of my journey began. My GP sent me to rheumatology, where I got a hypermobility diagnosis (still fighting for the EDS). I’m also under cardiology, waiting for a diagnosis, at the moment it’s suspected PoTS.

My health has taken a significant nose dive in the last two years, and I am in the process of finding suitable mobility aids to enable me to move around more.

But hold on... I’m only half way through this journey, so there’s no light at the end of the tunnel just yet.

However, I am hopeful I will get to a good place at some point in the near future, where I’m receiving the right treatment and support.
I love the NHS and cannot thank them enough for their hard work, but I can’t help but feel sad and slightly angry for the failures along the way. I honestly believe my health would be better now if I had received a diagnosis as a child.

The best advice I could offer anyone battling health conditions is persist! Keep pushing until you get tests and support.

I hope EDS becomes more recognised throughout society, and I will definitely do my best to spread awareness, so children and young people with EDS are not left behind.

Wednesday 22 May 2019

Guest Post by Cheyanne for EDS/HSD Awareness Month 2019

I once spent 8 months out of one year in the hospital due to complications from Ehlers-Danlos Syndrome and its co-morbid conditions - Mast Cell Activation Disorder, Dysautonomia, and Digestive Tract Paralysis. The idea probably sounds preposterous. Most are unable to fathom waking up in a hospital daily, seldom breathing outside air, and the fact that 4am blood draws and vital checks become a normal routine. Arriving home after all of those months was an adjustment. I did not know what to do when the extent of a day’s drama was no longer watching medical professionals bicker at the nurse’s station outside of my window. Still, I cannot help but wonder if it had to be that way. 

Ehlers-Danlos Syndrome is a degenerative genetic connective tissue disorder. With the progressive nature of this condition, worsening with age is almost inevitable. I have had symptoms of EDS since birth, but I did not receive a formal diagnosis until I was 14. That is 14 years without knowing the origin of my symptoms, and 14 years too late to spare me from damage that could have been prevented. 

An early diagnosis is imperative to ensure you care for your body in such a manner that does not add unnecessary progression. Had I known about Ehlers-Danlos Syndrome sooner, had I been sent to a geneticist at the first signs of random arm dislocations and gastrointestinal distress, perhaps I could have avoided the complications I have experienced - or at the very least, lessened the severity. I would have known to play sports but to wear the necessary braces to stabilize my joints. My team of doctors would have understood not to prescribe medications that are natural mast cell degranulators, as my EDS leaves me susceptible to provoking a cascade of life-threatening reactions from secondary mast cell disease. And I could have catered my diet for as long as I could to hopefully delay the intestinal failure which required a large portion of my bowel to be removed. 

To those just diagnosed with Ehlers-Danlos Syndrome this awareness month, it is my desire to convey the importance of caring for your body early on, yes, but not forgetting to live in the process. Doing so is a balance between maintaining a thriving physical state without compromising living life to the fullest, as well as finding that equilibrium amidst chasing the greatest of our heart’s desires without making ourselves sicker. 

Never repress your dreams out of fear. If you do, what is left to fight for? 

A link to Cheyanne's blog is: Hospital Princess

Tuesday 21 May 2019

GUEST POST by Sage for EDS/HSD Awareness Month 2019

My name is Sage and I was diagnosed with HSD (Hypermobility Spectrum Disorder) in 2017. Since then, I’ve developed over ten different symptoms and the pre-existing ones have gotten severely worse.

My current day to day life is a real struggle, my day starts from anywhere between 6am and 5pm. This is very unpredictable as it all depends how I felt the day before such as; if I did any strenuous exercise, if I slept well or decently that night or if I was up crying and screaming in pain all night. The latter has been my ‘usual’ for the past few weeks. 

My partner and I usually wake up together and he makes us breakfast. This had always been the case as my body would be too stiff to move when I first woke up or I would be too dizzy and getting up to do lots of standing would increase the risk of me fainting or injuring myself.  

After breakfast, I would either work on University assignments, as I am completing a Bachelor degree online, or relax in bed. Again, this all depends on the night and morning I’ve had. Everything I do is very dependent on those two factors. Something else that I have to think careful about is what I plan to do the next day. We don’t do anything or go anywhere without a plan. It’s risky business when a simple bus ride can turn into my worst nightmare. Which is being stuck in a suburb far away from home feeling dizzy, in pain and exhausted and the only way back is to get on another torturous bus.

Completing assignments seems to be one of the hardest things for me right now. I experience intense, daily migraines and the added screen time tends to make them a lot worse. I’ve been recommended migraine glasses and other costly substitutes but living out of home, unemployed with no government assistant makes getting help for any of my symptoms very difficult. 

However, I was able to get a wheelchair with a little dip into my savings at the start of this year. This has proven to be extremely helpful for going to the shops, monthly markets and doctors appointments. It is definitely very hard to be independent and apart of the community when you need to use a manual chair to get around. I have tried going for little walks down the road to the shops but that proved to be very difficult and something I’d prefer to never do again.

My joints and muscles tend to ‘give up’ when under constantly pressure so standing and holding things is also out of the equation. I spend a lot of my time either sitting or lying down, and to some that may be the dream but to me, it is frustrating and incredibly boring. 

The rest of the day tends to be pretty repetitive. I try to ‘spice things up’ by attempting to film a YouTube video for my channel that I just started using again, or maybe work on my business that I’m planning on launching in July. These creative projects keep me excited and motivated throughout my flare ups but it is heartbreaking when spending twenty minutes or more on something makes me double over in pain. 

Although my partner is incredibly supportive, my family is not. My mother has a misinformed opinion that the reason why I am in so much pain is because I’m not drinking enough water. Most nights she will call me, as I live in another state, and she will never forget to mention that this would all go away if I increase my water intake. I believe that it does help the intensity of my migraines but other than that I don’t see many things changing. My father on the other hand is a lot less forgiving. He believes I should get a job and that will not only solve my financial issues but also my health, so I took his advice and now I have an interview next week. This position is full time and it is about one hour travel by bus away from my house. Don’t be alarmed, we live very far away from the city so everything is about that distance away. Plus the state I live in is so small it only takes one and a half hours to get to the other side of the state. 

Although I’m very excited about the job, I am also incredibly nervous. So many things could go wrong when I’m alone but with my father’s stern words I feel like I need to get better and ‘suck it up’. My background and culture isn’t very accepting of illnesses and despite me showing my father the results to many specialists appointments, he refuses to believe that there is anything wrong with me. He believes I am making his all up to get money from the government. I feel incredibly alone whilst on the phone with him as I feel most of our calls focus on my pain. It’s like me verses him and not us verses the problem? I’m not sure if that makes entire sense but I just wish he spent more time and energy supporting me and less time lecturing and giving me additional stress. These stigmas about illness in my family is what prevents me from opening up to others. It took my many painful dates to tell my partner about this side of myself and I felt ashamed or embarrassed. I felt as if we are not equal because he takes on a lot of physical tasks and chores. 

Although it may seem that way, I understand now that it really isn’t. I provide a lot to our relationship and home together. I’m the person who plans our meals for the week, researches vegan and waste free alternatives and manages our finances. I clean when I can and although we’re still unpacking our boxes, I am working hard to making this place our home. 

If you can relate to this post; please make sure to reach out to family and friends. It’s important to stay connected with the ones you love and please try not to isolate yourself! 
Thank you for taking the time out to read my post, it was honestly a privilege to write and I hope this helped you understand a bit more about HSD!


GUEST POST by Allison for EDS/HSD Awareness Month 2019

Ehlers-Danlos Syndrome is a connective tissue disease that can cause excruciating joint pain, dislocations, easy bruising & tearing, & an endless number of co-morbidities, or conditions that go along with EDS. 

EDS causes a defect in collagen, the glue that holds your body together. If you can imagine, having defective collagen can affect any and every system in your body negatively. 

Everyone with EDS is affected differently - some may live their whole lives without realising they have EDS, others can have life-threatening consequences. Unfortunately, most people, including many doctors, don’t know about EDS, which can lead to judgement. If you know some with EDS, the most important thing you can do is show understanding and compassion. It’s a very difficult thing to live with, and a little kindness goes a long way. 

Monday 20 May 2019

GUEST POST by Telle - 'My journey though chronic illness'

Hi! So when Naomi asked me to do a guest post for ME/CFS awareness month and EDS, I asked what she wanted me to focus on and she left it up to me, so I thought I’d just tell you a bit of my story.

I am currently 38 years old and I’ve been diagnosed with:
  • ME/CFS - Myalgic Encephalopathy/Chronic Fatigue Syndrome 
  • Fibromyalgia
  • Ehlers-Danlos Syndrome type III 
  • I also have some EDS related illnesses including POTS (Postural Orthostatic Tachycardia Syndrome) and Mitral Valve Click Syndrome (Barlow’s Syndrome), NMH (Neurally Mediated Hypotension) and Gastroparesis
  • Migraines/severe headaches
  • I also have a few mental health issues
Today I’m going to write focussing on ME/CFS and EDS and my journey throughout the years. 

ME is a neuro-immune illness and is impacted at the mitochondrial level. 

On the 15th of February 1995 I was taken for assessment to the specialist ME/CFS clinic at the Royal Children’s Hospital in Melbourne, Australia. 

From grade 6 in 1992 until the end of my first year out of high school, I went up and down significantly with crashes and periods of semi recovery. I was never “great” but I got to a place where I could semi function until I would “crash” again for however many weeks or months. 

By 2005 I was looking for an Adult ME/CFS specialist to manage my condition. It took a long time, for me to trust him and him to trust me, but now we have a reasonable working relationship.

It became clear that the pain was not going to go away and that I needed help. From around 2007 onwards I saw a Pain Specialist and I was also diagnosed with Fibromyalgia. 

In 2015 I was diagnosed with EDS Type 3 (aka EDS - Hypermobility Type). It also explained the POTS and gastroparesis and other symptoms.

My pain just got worse and worse and worse. My second pain specialist got me into a Pain Clinic. 
I made it through all 12 weeks. My third pain specialist (who is my current one) is awesome. He listened to me and he knew what EDS was and he didn’t hesitate to give me medications I needed as a trial. 

So this brings up a major topic I wanted to discuss… doctors! I’ve been fairly blessed because I’ve been able to find good doctors through referral of others and just pure luck. 

Good doctors make a world of difference. I’ve had some crap doctors and doctors I didn’t understand, but when they’re willing to communicate and they’re willing to be there for you, then its so much easier to trust them, be trusted by them and get the help you need. It is also okay to tell them that you’d like to get a second opinion just in case they have other ideas or are more experienced.

At the moment I’m looking at getting a second opinion on what I can do for my ME/CFS so I can see if there are any treatments that I could have that might improve the quality of life.

Even with medications, it doesn’t fix everything, I’m still exhausted every day and ME/CFS sleep is not restorative. 

So many people who have ME/CFS have pain; it does not automatically mean you have Fibromyalgia and being hyper-flexible does not always mean you have Ehlers-Danlos Syndrome or Hypermobile Spectrum Disorder. 

The reason I advocate for a 'whole person' approach is because these illnesses are a whole of body system and that includes the environments, the triggers for what set off the ME/CFS or the EDS gets worse for some reason. But I've learnt a long time ago that I wanted to live my life and not be identified as 'the sick person' all the time. 
The fight is to live not just be alive.

If you’ve made it this far and you have questions just ask and I’ll keep an eye on the comments and try to answer whatever Naomi can’t in her brilliant knowledge (seriously guys she’s amazing), but one last thing. I asked my friends what they’d want to know about how to help people in this situation, the easiest suggestion is to just ask and be a good friend. 

Always and forever,
Telle (@cracks_in_porcelain on Instagram)