Tuesday, 19 March 2019

Ashamed of a diagnosis

I talk a lot about having M.E. and Functional Neurological Disorder and Hypermobility Spectrum Disorder (my main three illnesses that leave me the most disabled) here on my blog to try and raise awareness of what these illnesses really are and my life living with them, but truth is outwardly I'm ashamed because of how misunderstood these illnesses are. Often I just say I have hypermobility/connective tissue problems and some neurological disorders.

There's a lot of stigma around these illnesses. M.E. is often portrayed as a "just feeling tired" illness when in reality it's much more than that and the 'just feeling tired' can leave me in bed unable to move without a lot of effort. FND is portrayed as a psychosomatic illness or that I'm feigning my symptoms or that attention or drug seeing; like how can anyone fake a seizure for several hours - like my brother once told an A&E Dr I'd need to win and Oscars' to put on a tonic-clonic seizure like the one I was presenting with. And HSD is seen as 'way less severe than Ehlers-Danlos Syndrome' and one person commented online that is doesn't matter if people get wrongly misdiagnosed with HSD. Wrong! HSD can be as severe as hEDS, we just don't have all the symptoms for the new diagnostic criteria but I still regularly dislocated joints and have intestinal dysmotility and other complications and I've developed secondary debilitating conditions such as POTS.

Yet why do I still feel ashamed? Because of other people, not just by care professional but by others in the chronic illness community.
There should be no hierarchy of illnesses, whatever your diagnosis we are all equal, we have all had our lives turned upside-down we are all plagued by daily disabling symptoms wondering "why me?". 
No one, especially someone with a chronic illness should put another person with an illness down or see their illness as "worse" than another persons.

Care professionals should take the time to update their knowledge on a person's illness, or refer to their specialist consultant. Often this can be hard, especially in situations like A&E but it doesn't take 5 minutes to ask the person to explain their illness rather than jumping to judgements like a person is feigning their symptoms.
I can easy explain what M.E., FND and HSD is in a clinical way that makes my real illness a real illness and if I'm unable to I carry information on me that explains them for me.

Every illness/disabilty is equal and devastating. I shouldn't be made to feel ashamed of the illnesses I have.

Monday, 18 March 2019

One Second Every Day - March: Week 3

Monday 11th March

Really not feeling myself today. Tired, in pain and feeling low. Had my carer for a couple of hours. 
Spent the rest of the day just trying to look after myself as best I can.

Tuesday 12th March

I was meant to have my carer's for ½ an hour today but I wasn't feeling well physically and emotionally so I cancelled.
I've hardly done much today and my spoon count (see Spoon Theory) was very depleted today and most of my energy went into having a bath
I did manage to write a couple of PostCrossing postcards as a distraction.

Wednesday 13th March

Had a nice quiet recharging day and nothing much to it.
In the evening Dad, Mandy and I watched two episodes of 'Cheat' which I'm really enjoying as we didn't get to watch it the night before.

Thursday 14th March

Had my Bluebird visit today which helped lift my mood a bit. I recently had 3 new carers to my care team and one of them has become my main carer and we get on really well, plus she can braid hair.
I also called the Distance Learning Team to get my deadlines for my course so I did a bit of studying to get started.

Friday 15th March

Woke up and thought it was Saturday. Took me over an hour to get out of bed today.
Did my usual morning routine and actually got dressed before midday (little victories despite the spoons it took).
Watched TV for a bit. Struggling with concentration today so I've flitted through watching TV, laptop stuff, reading two parts of my distance learning course and writing a letter.
It was just Dad and I again this evening and I managed to concentrate for the film tough we had a break in between. It was a film called 'Sully' and it was about the plane that landed in the Hudson River in New York.
I've just finished off the part of work I was working on. It's now 9.15pm so I'm going to leave studying for n 

Saturday 16th March

Woke up okay-ish.
Like yesterday I flirted between doing different things again.
Not a very exciting day. 

Sunday 17th March

Didn't feel confident enough to go to church.
Washed TV most of the day; feeling a bit flu-like. Managed to get some studying done.
Evening wasn't too great with lots of seizures.

Saturday, 16 March 2019

GUEST POST by Hannah for Disabled Access Day 2019

Disabled people have the same hobbies, interests and passions as non-disabled people. We also need to go through the same mundane motions as the rest of society – from getting about our houses, to doing our shopping and going to work. But, whatever our health condition, disability or impairment, we’re still a long way from having equal access to most aspects of daily life. From architecture to attitudes and everything in between, we are not there yet. 
When you think of disabled access, what comes to mind? Is it an accessible toilet, a ramp or a lift? How about hearing loops, British Sign Language, lighing, braille, large text, easy read, personal assistants and the language we use?
Disabled access is so much more than ramps and toilets, and I want to share my thoughts on the least remembered yet most important element of access for disabled people everywhere – ATTITUDE! So, without further ado, here are my top 5 tips for being accessible by attitude:


Attitude begins with open mindedness and understanding that, whatever your background there is, always more to learn. Disabled people, like anyone, are diverse and complex – they have different abilities and strengths and weaknesses and needs. Even people with the same impairment like to do things differently. Disabled people are not one size fits all. Treat disabled access as individual and listen to what people have to say.


Don’t be scared to talk for fear of saying the wrong thing. Disabled people have heard it all and as long as you have the right attitude and are willing to learn, say what feels right. When I’m accessing a building, event or attraction my general rules are to only ask what you need to know. You need to know how I can access the occasion. This doesn’t matter what my diagnosis is. Start by asking ‘How can I help?’ Don’t ask ‘What’s wrong with you?’ and don’t ask ‘How long have you been disabled?’ Always assume ability (go back to your first question, if a disabled person hasn’t mentioned that they need something, don’t assume that they do). Don’t be offended when a disabled person refuses your help – your offer is still appreciated. Most people prefer being referred to as a disabled person and some people prefer person first language such as ‘person with a disability’. Disability is not a dirty word but always consider whether you actually need to refer to someone’s disability and if not, just reference them as any other person – by their name or pronoun. Lastly, DO NOT make a joke or light-hearted comment about someone’s access requirements (unless you know that person well enough to do so). Just be friendly – good access really is in being a nice, friendly human.


Information is so important for disabled access and good access information demonstrates a good attitude. The more you think about the information you give, the more confident I will be in accessing a service. Share all of the information, even the parts where you aren’t quite so accessible. Most people will be much happier to access a service that isn’t fully accessible if you have the right attitude and know they will be supported to access the bits they can and treated with respect. When sharing information think about everything you can offer as well as the room layout, ticketing (if appropriate) and event format. Attitude is Everything have a great template for thinking about access information for people with disabilities.


Ask for feedback on your service from a wide range of disabled people and act on their feedback. If you have a business or you run an event, you can use feedback to sell your service, whilst demonstrating your attitude and making more disabled people feel welcome in future. Make sure you talk to disabled people and ask them how they’re finding it. Most disabled people will be so happy to share their experiences for improvement. I go to a lot of gigs – it’s my favourite thing to do. Disabled access and attitude is so varied in live music; I’ve experienced the very best and the very worst. I almost always give feedback when attending somewhere new and it feels so good to tell someone they’re doing something well. I wish more places would sell their good work through access information (tip number 3) so that more disabled people would access their service. Remember – the purple pound (that’s the spending power of disabled people) is worth £250 billion! Let’s start making disabled access competitive


Be an ally of disabled people by spreading the word of good practice and raising awareness of attitudinal barriers. Tell your friends about all aspects of disabled access and raise awareness of all the barriers that disabled people face – it’s not just about ramps and toilets! Make yourself aware of good initiatives that need to be recognised more, like the Access Card (http://www.accesscard.org.uk/), which helps businesses understand the needs of disabled people. Keep talking about the importance of attitude in disabled access. The more we talk about it, the better we’ll get at it!

Hannah at a concert with a backpack for her enteral nutrition equipment
Hannah's blog can be found here where she writes about different topics including disabled access, live music, life with a disability, and her travels and adventures.

Helpful Links for Disabled Access Day:

Friday, 15 March 2019

One Second Every Day - March: Weeks 1 & 2

Friday 1st March

B-A-D PEM day from Thursday's trip to London (only managing to write this Sunday). 
Spent the whole day in bed except to go downstairs to bring my breakfast and a drink upstairs as Mandy was out running errand and I also went downstairs mid afternoon for 10 minutes to eat so soup but just doing that tired me out enough to need a nap afterwards. 
My blinds remained shut tho whole day. Most of the day was spent laid flat as my POTS and OT (Orthostatic Intolerance) was playing up big time. 
I managed to watch Amazon Prime on my laptop with the screen on the dimmest setting and the volume as low as I could get it. 
I felt really flu-like and also had a migraine all day. 
Mandy brought up drinks for me and kept popping her head round the door and Dad did the same when he was home from work. 
It took me a while but at bedtime I changed into some fresh pj's. 

Saturday 2nd March

Still having a rough day and had a quiet morning. 
Mid afternoon with Dad's help I managed to clean Flop out as he was stinky. Straw bedding wasn't the best we've worked out so Mandy bought some wood shavings this morning which smell much better. 
After a something to eat and a rest I had a bath (just gone 4pm by this point and I was still in my pj's). It was a spoonie bath, aka lay in the water and just pour jugs of water over you and then have a quick wash of your face, but I felt better for it and left my usual talc explosion on the floor. Having the bath lift makes days like today so much easier. 
The rest of the day was spent curled up on the sofa drinking cold and flu herbal tea. At least I wore something other than pj's for a few hrs today.

Sunday 3rd March

I really struggled to wake up this morning. I took just less than 1¼ hrs from my initial alarm going off. Still feeling pretty shattered so I decided to conserve my spoons and miss church again. 
I have managed to get dressed before midday today! 
It's now 2.13pm and I've had my main meal (when I'm eating for myself I prefer to have a small breakfast, then mid afternoon have a main meal to keep me going (though I still need to eat small portions) and then have a light meal in the evening) though writing this now I've realised I forgot my salt - a big thing for people with dysautonomia and POTS is to have extra salt in their diet. 
Dad and Mandy are out for the to a surprise birthday meal in Lincoln so I've set myself up on the sofa with plenty of drinks and blankets so I don't need to go far. I've also got my CareLink just in case. I also have permission to put the heating on. 
I'm not keen on being alone as I worry about having a bad seizure or fall but I have to but equally I like the independence and the quiet and being able to do what I like when I like.
Dad and Mandy weren't back as late as I thought. The got back around 5pm and we all ended up going and having a nap. I slept until around 7pm and then had something to eat and in the evening we watched Endeavour.

Monday 4th March

Getting out of bed was very difficult today. It took me about an hour ½ from my first alarm going off to then waking up to then getting out of bed.
I've not done too much today. I had my carer this afternoon.
Mandy left me with a few jobs to do an by pacing and breaking tasks into little manageable chunks and rest in between I managed to get them done.
I also called my advocate to see what was happening with my Continuing Health Care assessment.
I've also done a lot on my blog today.
This evening we (Dad, Mandy and I) watched the last episode of Endeavour.

Tuesday 5th March

I didn't get off to bed to easily due to pain even though I was exhausted and I was feeling low in mood too which being tired probably didn't help. Lately I've not been doing too bad at getting off to sleep.
Had a quiet day in apart from my L&H support workers beefy popping round but there's not much for them to do t the moment.
This evening we had pancakes for tea.
In the evening I spent quite a lot of time on my laptop trying to working out how to get a dropdown menu on my blog without having to try and work out some complicated computer code which I managed to do and then I spent ages creating the menu and adding and transferring the information; it was quite a job!
I think I over concentrated and over tired myself. Late evening (gone 9.30pm as Dad and Mandy where back  from church group), I had an absence seizure and then mid absence seizure my heart started to race and I got hot and I knew I was going to have a tonic-clonic seizure but I couldn't act because I was in my absence seizure. Over 1½ hrs later I'd spent that time in various states in consciousness, having tonic-clonic seizures; myoclonic seizure in my arm and in my whole body; unable to speak; in full rigid spasm and in a lot of pain. 
By the time I was able to crawl upstairs it was pretty late but I nodded off fairly quickly.

Wednesday 6th March

Struggled to get up this morning.
Had my ½ hr Bluebird call this afternoon and we dropped some mail off at the post office and then my carer braided my hair for me.
Quick stop for something to eat and then my friend Abi came round and we chatted for a while.
I was pretty exhausted by this point so I had a rest and then did some more work on my blog which was slow going but I'm started to feel happy with what I've achieved like building dropdown menus and just decluttering and organising everything.
It's nice having the back spare bedroom as a little sitting room.
In the evening Dad, Mandy and I watched Baptiste.

Thursday 7th March

Mission accomplished getting up this morning! Sometimes it's the small victories that matter more.
Had breakfast, got washed and dressed and put on a little bit of makeup.
12-2pm I had my carer. All of the carers in my care team at the moment I get on rally well with and again small things like that make the world of difference. 
First of we went to Specsavers to get my glasses adjusted. We then went to Tesco. For the first time I used one of the clip-on wheelchair shopping worries which me and my carer found amusing, especially because of my lack of 3D vision I couldn't tell how far away or close to things the trolly was. 
I picked a different colour hair dye to my usual as I'd like to go more red but not bright red. I also got myself a new foundation and restrained myself from adding to my makeup collection. I have plenty of choice at the moment and I especially love the eyeshadow palette I bought a few weeks ago and I get makeup bits in my Birchbox too. I also treated myself to some tulips to brighten up my bedroom.
Back home now and exhausted so just I'm just going to crash out for the rest of the day.

Friday 8th March

Spent most of the day getting ready.
At 2.30pm I had my assessment with the Adult Autism Team. We went through questions about socialising, sensory hyper/hyposensitivity and then some open questions which we discussed.
It was quite difficult and draining.
I spent the rest of the day crashed out.
It was just Dad and me this evening so we watched a film.

Saturday 9th March

(Didn't fill this in on the day so can't remember what I did, oops!)

Sunday 10th March

Not quite how I planned to end my week.
Woke up late as I went to bed exhausted and forgot to change my alarm so I woke up late but manage to get myself together to get to church.
During worship I went into a prolonged seizure episode and ended up in A&A.
I feel so embarrassed as I get stuck in an anxious cycle of avoiding going to church in case I were to become ill so I avoid going but them I miss it and them days like today where I put my anxiety aside my anxieties just get confirmed.
When Dad was free after his church had finished he came to see me in A&E and we decided it would be best for me to go home as I can get better care there and I have all the meds I need and Dad to keep an eye on me an help me more as he can care for me 1:1 compared to the staff etc.
We got home and Dad got me into bed and gave me my meds and made me a drink and held the drink for me and I went off to sleep.
I spend most of the day sleeping/resting.
In the evening I though it would be a good idea to come and lay on the sofa downstairs and we watched Baptise.

Monday, 4 March 2019

Action For M.E. - 'Walk with M.E.' Campaign

Action for M.E.'s campaign Walk with M.E. event which is a sponsored walk with a twist: everything is done as a team. Starting on Friday 1st of February, team members count their steps for 100 days and add them together to make one grand team total, aiming to reach one million steps between them.

Walk with M.E. was organised for the first time in 2017 by Action for M.E. supporter Natalie, who was diagnosed with M.E. in 2010 and has kindly allowed us to continue running the event.

Natalie explains below how she designed the event to be accessible to as many people with M.E. as possible:

Natalie’s story 

“Ten thousand steps per day is quite achievable for most but it's actually quite a lot for someone like me. M.E/CFS participants will need support to complete this challenge, as they may do with their usual day to day activities. The challenge is therefore designed to be completed in teams, which means my team mates can help me out and donate their steps to help me achieve my target of 1 million steps over 100 days.”
To find out more or take part click here.

Saturday, 2 March 2019

One Second Every Day - February Week 5

Monday 25th February

Had my carers 11-1pm. Got something to eat and then met my advocate at 2.30pm. We discussed meeting with the Practise Manager and I gave her an update on things and how i was feeling.
At 3pm I had a CPA/meds review with my MH care-co and Dr.
Went home via the pharmacy.
Rested for the rest of the day as I need as much energy for Thursday.

Tuesday 26th February

Glad I went to the pharmacy yesterday and got them to deliver my meds today and woke up not feeling great and it just wouldn't have been possible to have gone in my ½ hr care call today. Instead my carer and I nipped to the post office (I would have left it to my carer but I need cash out) and then we sorted my meds out as my hands have been in too much spasm, also got something to eat and today's carer makes good coffee.
Not the best day seizure wise. Had one this morning and then another in the car with my carer.

Wednesday 27th February

My hairdresser came midday to trim my fringe and then my carer came. i was hoping to get my hair braided but instead my body opted to have a prolonged seizure and make acquaintance with a rapid response paramedic. Thankfully he listened to me and my care needs and wishes. Entonox helped calmed my spasms down and I was also pop my joints back in. The paramedic also gave me some of my own diazepam. I was still having bad myoclonic seizures but he didn't want to overload me with a top-up of IV diazepam. My carer stayed as log as she could and she was trying to arrange for another carer to come and take over when my friend Abi came to the door (in the chaos of everything I'd forgotten she was coming). Abi was happy to stay so my carer could leave. As there was very little A&E could/would actually do the paramedic and I decided home would be the best place for me and to call back if I start to get worse again.
Abi was great, she made me a sandwich and a coffee and she was patient with my speech difficulties and we chatted and it was a nice distraction.
In the evening I got my bag and packed lunch ready; put things on charge and downloaded some things to watch on my iPad and then had an early night.

Thursday 28th February

Up very early at 4am to give myself enough time to wake up and get ready, do final bag checks and put on some makeup. Luckily I did asTASL patient transport arrived early (around 5.20 instead of 6/6.15am) just as I was in the middle of doing my makeup so i got in a panicked rush as I'd planned to sit and have a coffee whilst I waited. 
I was glad they was early rather than late. We arrived at appointment 1 of the day in plenty of time and then Dr Kazkaz was running over an hour late.
It was a short appointment. Not much to actively do except see the specialists that I'm seeing for the complications of my hypermobility connective tissue issues (gastro, urology, orthotics, physio etc). She was please that I was taking on all the right advice to manage my POTS and subluxtions/dislocations and she's going to reiterate to my GP that self-management for subluxtions/dislocations is what I should be doing and that there's no need to present to A&E every time (which would be ridiculous) to "prove" that my joints sublux/dislocate. For now it's a case of attend the COPE Pain Management Programme and then the hypermobility exercise program and wait to go to Leeds to get my FND and M.E. more stable to in the future I can hopefully to the inpatient rehab programme at Stanmore (as Stanmore isn't an acute hospital they're not equipped for my seizures even though Professor Edwards says it's not a problem) but hey, we have a plan.
The TASL crew then picked me up and we detoured to the canteen for coffee and I got some soup and then we drove to Cleveland Street. I had a rest on the stretcher and had my soup; I also had a migraine brewing - tiredness and travelling being two big triggers so I took some pain relief and anti-sickness as as well as feeling sick from the brewing migraine I'd eaten too much.
My brain decided to have a little seizure - probably brought on by tiredness and pain and my blood pressure lowered and my pulse increase so maybe it was an autonomic seizure? (I'm still trying to work these out) Thankfully we had enough time before the second appointment to have a lay down.
Second appointment was more a group info session looking as what pain is, how pain affects our lives, the pain cycle and information on the pain management programme so we can make an informed decision about whether to go ahead or not. I'm going to give it a shot; I've noting to lose apart from all the travelling. The next step is to have a 1:1 session to assess my suitability for the programme, ask questions and for them to decide if I'd go the program individually or as a group etc.
Home with a pitstop at Peterborough services for the loo and a cup of tea (I felt in a tea mood); the TASL crew also got a KFC and we sat for a bit and then my brain decided to have a few more seizures. The crew was great we went back to the ambulance and they helped get me comfortable as I'd going into rigid spasm and they helped me get some pain relief and held the cup for me and then they help my cup of tea so I could drink (paper straws vs plastic straws people (!); the straw ban annoyance and how it makes life difficult for people like myself who need decent plastic bendy straws for drinking out of necessity). I'm so glad I got a cup tea as tea makes everything better. Once I was settled we headed back home.
Travelling today I've found a new onset on Amazon Prime that I like called New Amsterdam which is a medical drama (not like I need more of that in my life!) which I'd defiantly recommend.
Home, sorted a few bits out and then straight to bed.

GUEST POST by Henna for Eating Disorders Awareness Week 2019 - Anorexia from a Parent's Perspective

Two years ago today, my 11 year old son was teetering on the edge of an abyss.

He had just been diagnosed with Anorexia Nervosa. He was desperately ill, physically weak and mentally in turmoil. His decline was like that first terrifying plunge on a roller-coaster: he was tiny to start with, so when he stopped eating he became dangerously sick within weeks. I sat by his bed in A&E and watched the heart monitor as I waited for a doctor. We were in pieces.

Our family life had changed from "normal" to "crisis management" within the blink of an eye. My husband and I became full-time carers to our youngest son whilst our older son (only 13 years old) became necessarily independent. We lurched from one terrifying moment to the next, not daring to think about the future.

What followed was a turbulent tour through the depths of darkness. Our son kept getting worse, and every time we thought he'd hit the bottom, the floor fell away and he plunged further. He was initially treated in the community, then as a day patient in a specialist unit, and eventually was admitted to an inpatient unit. We saw our child suffer unimaginable horrors on a daily basis. NG fed, mute, sectioned: you would not wish that on your worst enemy.

This doesn't sound like much of an uplifting story, does it?  

Bear with me. There is as much light as there is darkness. 

Our son has recovered. He is now a fully fit, healthy, frighteningly tall teenager. He has shown superhuman resilience and bravery. He has risen further than he ever fell, and no small part of that is down to some incredible people we met along the way: nurses. 

When our son was at his illest, a nurse at our local children's ward championed his case. She went above and beyond to show everyone that he was a frightened, desperately unwell child, and not just a "risky patient". When he was referred to a specialist hospital, our family therapist was an amazing nurse, who will stay in our hearts forever. Once admitted to the inpatient unit, a team of nurses helped to him to take back control from anorexia's grip. Once discharged, a nurse therapist supported us to get us back on our wobbly feet. The doctors were good. The nurses? The nurses were phenomenal. 

Don't get me wrong, nurses aren't saints. Some are definitely better than others. But if I had to pick a profession that makes the most difference, I would pick nursing. And I did pick nursing: after the dust settled and our son was back home, at school, and the future was once again something to look forward to, I applied to return to university. I'm now a first year mental health nursing student. 

Every day I think about the nurses we met on our son's journey. If I can become just a fraction of the nurses they are, I will be very happy. I can think of nothing better to aspire to. 

The last two years has taught me a huge amount about anorexia. I, like so many, had assumed it was an illness that only teenage girls had*. I had a vague idea of it being a lifestyle choice that had got out of hand. Something to do with social media and thigh gap challenges. The reality, of course, is nothing like that. 

Our son taught us about 'The Voice' that commanded and bullied him relentlessly. He showed us just how overwhelmingly powerful the illness is. We learned that our assumptions were completely wrong, and we started telling everyone we met about the reality of anorexia. Most importantly he taught us patience. You can't just take a magic pill or go a therapy session and be cured; recovery is slow, it's painful, it's far from a straight line. And recovery is worth it. 

I want to use everything I've learned to help other families facing anorexia. My hope is to work in CAMHS (Child and Adolescent Mental Health Services) and to offer a knowledgeable ear to both the patients and the families, to share hope, and to support those living with uncertainty. Roll on 2021, qualification year!
*research suggests that up to 25% of those showing signs of an eating disorder were male - Beat

Beat is the UK's biggest eating disorder charity.
For information on men and eating disorders click here.
If you are worried about someone close to you find Beat's information here.
For Beat's Support Services, which is open to those with eating disorders, carers, family members, friends and professionals. Support includes online chats, a telephone helpline and a directory of local services.

GUEST POST by Gwen* for Eating Disorders Awareness Week 2019

The theme for this year's Eating Disorders Awareness Week is 'Breaking Down the Barriers; Breaking Through the Stereotypes'. 
As I fit into several minority groups I feel qualified to write about this. I'll attempt to address how some of those issues are reflected in my Eating Disorder. 
I hope other Eating Disorder sufferers will be able to relate to some aspects of my story and I hope it gives a better understanding of DID and how it affects me in terms of my Eating Disorder.

I have Dissociative Identity Disorder (DID) and some of my different identities impact upon my Eating Disorders.
"If you have Dissociative Identity Disorder you will experience severe changes in your identity. Different aspects of your identity may be in control of your behaviour and thoughts at different times." - Mind
Madison has the OCD tendencies that comes with Anorexia
Mackenzie has the restrictive subtype of Anorexia.
Katy has Emotional Overeating. So if I'm sad, I eat; if I'm angry, I eat; if I feel I can't communicate something, I eat. Pretty much, if I feel an emotion it requires a food response which I'm aware of.
Sarah is somewhere on the Autistic spectrum (undiagnosed) so she has severe difficulties in tolerating certain types of food due to sensory issues. 
Eli struggles with trauma so she struggles with eating due to trauma memories, she gags at certain foods, feels anxious and distressed. 
Hannah is Bulimia though thankfully this has been in recovery for 8 years.

Because of my DID and different identities food choices are limited and because of this it makes eating a nutritionally balanced diet a challenge.

The other way DID affects us is if we have a spell of amnesia and do not remember if we have eaten or not, or if one alter is restricting, another alter might switch out and binge, this used to cause a lot of arguments within our group.
Sometimes we need 'safe' textures or flavours to bring us out of a de-realisation episode. We can get through a packet of mints whilst trying to focus on the taste to bring us back to current awareness of our surroundings which is a grounding technique. 

Regarding body image, my identities have no idea what we really look like.  We have an idea of what we look like because we see ourselves in photographs. We avoid mirrors because the person in the mirror seems to change, or sometimes we will look and not recognise myself.  

When we were 15 I was admitted to an Eating Disorder Unit which helped me emotionally. Then I had no professional input for my mental health until 8 years ago at the age of 30 and then I started working with a specialist DID therapist and now I've started to begin my recovery journey for both my DID and eating disorders.

My final message is that I wish you all a safe journey to recovery.  It's a long process, but as the saying goes, "My worst days in recovery are better than the best days in relapse".   

For more help and support visit:
  • Beat - the UK's Eating Disorders charity
  • PODS - Positive Outcomes for Dissociative Survivors
*Gwen is a pseudonym; the writer of this post wished to remain anonymous 

Friday, 1 March 2019

GUEST POST by Isabel for Eating Disorders Awareness Week 2019

“You are worthy of treatment"

My eating disorder seemed to spring up out of nowhere. I seemed to become conscious of my body shape when I was at secondary school, but it didn’t impact me until after I’d finished school. One minute I was sitting my GCSEs, enjoying life and with a good group of friends. I changed schools for sixth form and by the time I sat my AS level exams I had a serious problem and was hiding it from everyone. 

When I was given my diagnosis I was told by the doctor if I carried on with my behaviours I would die. My organs were damaged from restricting, abusing laxatives and diet supplements. But my mind was damaged too. My eating disorder had completely consumed me and I was just a shell of my 17 year old self. 

Unfortunately I fell through the net. I’d surprisingly managed to keep inside the ‘healthy weight’ range and therefore I was denied treatment. I felt like a fraud, that my eating disorder couldn’t be real because I wasn’t "thin enough" to get help. I felt like a failed anorexic because I didn’t fit the criteria. This was detrimental to my health and I deteriorated.

My eating disorder worsened, but I was dancing all day at my dream dance school, but I had no energy to dance. I’d pretend I had an injury so I could sit down, my heart racing knowing if I carried on I would probably collapse. During auditions for the next year of dance training I ate solely for the energy, realising I wouldn’t make it through the process if I didn’t. In the end I didn’t gain a place at any of the dance schools I’d applied to, and my eating disorder made me feel like I had nothing else to live for. I had no back up plan and no place at a school for September. I was completely crushed. 

I did continue dancing, but at university. Some people scoffed that I’d ‘downgraded’ from the prestigious school I was at earlier that year, but the truth is, I seemed to be happier there. At uni I felt less pressure to fit into the dancer stereotype. I made new friends, took up new hobbies and enjoyed life in a new city. The teachers were supportive, and when a tutor noticed I wasn’t looking myself she arranged a meeting with me. It was then I decided that I was going to see my GP and get a referral to an eating disorder clinic and choose recovery for the first time.

This clinic accepted me despite my current ‘healthy weight’ status, something that I was shocked at. Partly because I had expected them to decline me like last time. I was given a diagnosis of EDNOS/OSFED, more specifically a type my therapist called 'Atypical Anorexia'. 

Treatment is not fun, I had to have regular blood tests, ECGs and weigh-ins, I had so many meal plans and food diaries and in all honesty it was awful to have to go through all of this whilst simultaneously studying my degree at university. There were many appointments I didn’t want to go to, but I knew I had to go to keep getting better. Sometimes I’d not feel strong enough to go on my own and my boyfriend would get the train over to come and be with me. I’ll forever be grateful for that. People underestimate how difficult recovery is. I’d often turn up to appointments in tears.

I was given my fair share of meal plans, food diaries, journals, and CBT. After all the weigh ins, blood tests, and therapy sessions I was discharged happily with the support of my family, boyfriend and close friends in the summer of 2017. It is my proudest achievement.

I was very lucky to receive the right help when I did. Unfortunately there are so many people that are denied treatment as they are not 'stereotypically underweight' or don’t portray the typical signs. Eating disorders do not discriminate, they affect the young, old, black, white, poor, rich, straight, gay and everything in between. 
"You are worthy of treatment no matter what you look like, and recovery is possible.“
Beat is the UK's leading Eating Disorder charity.
For Beat's Support Services such as online chats, over the pone or to find services local to you click here.
For Beat's recovery information click here.

GUEST POST by Lily* for Eating Disorders Awareness Week 2019

Why eating disorders are anything but glamorous and why having one is anything but a lifestyle choice.

And so, it’s that time of year again. The time of year to ‘take stock’ and try to explain to the world why eating disorders are so dangerous, for another year to pass and for little to change. Little investment from the government into much needed mental health service provision, little movement from social media companies who promise us that they will remove harmful content and most of all the ‘too little too late’ for those who have lost their lives over the past 12 months, to a disease, a disorder all too often branded as ‘a lifestyle choice’. 

We live in a world where the image of ‘beauty’ is plastered everywhere we look, from magazines and newspapers to television advertisements, companies that thrive and make millions from our constant insecurities, our desire to better ourselves, to ‘fit in’ a primal instinct which dates back to tribes from thousands of years ago. We like to be part of something, to belong. However, although I believe that media does play a part in eating disorders, I’m yet to believe they are the cause for the increasing number of lives lost each year to debilitating and deadly eating disorders. 

I’m sure, if you have read this far, thank you. You may think to yourself, ‘Why can’t they just eat?’, whilst potentially thinking that the author of this post is typing this in single digit clothes. I can tell you, you are wrong. People with eating disorders come in all shapes and sizes, believe it or not, some of the sickest people are also those with a ‘normal BMI’- BMI means nothing, even the latest NICE guidelines for treatment of eating disorders stipulates this. Anyway, I will not dwell on BMI for now but will give you an insight to what it’s like to live, day in, day out with an eating disorder. 

Some people in this world fear spiders, others fear snakes, or rats or heights and therefore do not trek up mountains or travel to parts of the world where they are likely to encounter these. They provoke a reaction; a surge of adrenaline, a rise in cortisol which makes your heart beat faster, giving you the surge of energy for our innate ‘fight or flight’ response. Now, lets change the fear, lets imagine that the spider was a sandwich, a slice of cake, a piece of fruit or a slice of cheese- foods that are near on impossible to avoid, coupled with the phobia of weight gain. Every waking hour, thinking about when your next encounter with food will be, how much it will be and what you’ll be faced with. It’s exhausting… really exhausting. 

Then there’s the numbers… I mean, maths has never been my strong point, but my mental arithmetic has strengthened over the years, mainly due to the obsessional calorie counting. I could tell you the calories in most foods but it’s something I’m far from proud of - in fact it upsets me to think of all the time I have wasted learning these things and how I could have utilised it better; perhaps learning a new language or skill. Then there’s the scales; growing up, I don’t remember having weighing scales in our house and it was never something that particularly bothered me; I can’t say I cared about the size of my clothes, I enjoyed sweet things, lots of them… Nowadays, I rarely get through a day without staring at the number between my toes, sometimes 6,7,8 times a day. It distresses me, yes, but I have a compulsion that I need to know, that despite never being ‘happy’ with the number, it gives me some sense of security. If only I could utilise that time better too…

It takes up an awful lot of time having an eating disorder. It’s not some ‘fad diet’ or ‘a diet gone wrong’ its an obsession, a compulsion, a disease and no two people will endure the same experience. I am fully aware of the toll my eating disorder has taken on my body, I know the risks and I know what I need to do to overcome these but its much easier said than done. Much of this battle, I fight alone as I do not want to be seen as ‘seeking attention’ or ‘a failed anorexic’ hence why this post is anonymous. We all have our own demons in life and after over 10 years of suffering, I continue to work towards defeating mine. I am very grateful to the NHS and the support they have provided me with over the years, I have a very understanding GP and have accessed a variety of specialist eating disorders services, I count myself lucky. My journey has been anything but plain sailing and sometimes I think that my current weight influences how I am treated. As difficult as it is financially, I have made the decision to see a therapist privately - which doesn’t come cheap. I hope someday I can learn to trust her enough to let her inside my head.

So, glamour… some people think that the thinness that comes with some types of eating disorder is glamorous. I can tell you for sure it is wrong, and that societies perception of eating disorders as just those with a skeletal body image is also very wrong. The coping mechanisms for those suffering with an eating disorder vary, mine have changed a lot over the years but I have yet to find any of them glamorous, neither is the side effects of thinning bones, yellow teeth, dry skin, chapped lips, dehydration, cardiac arrythmias, acid reflux and crippling stomach pains to name a few. It’s not glamorous to cancel on your friends last minute because you are too anxious to join them for dinner, to have to know the menu a week in advance, to spend several hours a day in the bathroom, for endless amounts of mascara to be streaming down your face, heading back to the table acting as if nothing is wrong. I envy people who say they are happy with their bodies, I was hoping I would grow to fall in love with mine, but I am very sceptical. Imagine everyone around you telling you that you need to gain weight yet looking in the mirror to see nothing but jiggly bits and flaws that you are so desperate to lose. You lose trust in those around you because you feel like you are being lied to, you become manipulative and deceitful all to save yourself from having to take in those extra five calories…

It’s sad for me to think of all the years that have passed, the missed opportunities. I am now an adult, with a full-time job, who strives everyday to support others in their recovery, yet I have so far left to go in my own recovery journey. I am grateful to my illness in that it has made me a stronger person, given me the opportunity to meet some lovely people, and I am more insightful as a person. However, I regret that I can’t let other peoples love for me in, I can’t accept compliments and can’t seem to move forward as I continue to battle with myself. Someone once told me ‘ships in the harbour are safe, but that’s not what ships are built for’ and I hold onto that every day. 

I strongly encourage anyone who may feel that they are suffering with an eating disorder or have a loved one who they are concerned about to contact the Beat helpline, seek support sooner rather than later as early intervention is key to recovery. 

To contact BEAT for support click here to speak to someone either over the phone, online or face-to-face or to find services local to you.
To visit Beat's website for more information about their work or to understand more about eating disorders click here.

Thursday, 28 February 2019

Rare Disease Day 2019

Today is Rare Disease Day ® and my rare illnesses are Functional Neurological Disorder and Hemiplegic Migraines

The aim of Rare Disease Day ® is to raise awareness of rare illnesses and the impact it has on individual's lives and the need for research to help those living with rare conditions and to eventually one day find a cure.

1 in 20 people will live with a rare disease at some point in their live (Rare Disease Day ®) and despite that statistic there is no cure for most rare illnesses and many people also go undiagnosed or it will take them years of difficulty as well as delays to get the right diagnosis often leaving individual's feeling isolated and confused.

The first Rare Disease Day ® took place on the 29th February 2007 a 'rare' date and since then Rare Disease Day ® has taken place on the last day of February - a month which has a 'rare' amount of days.

So, what is a 'rare' illness?

In Europe the definition of a rare disease is that it affects less and 1 in 2,000 people.
There are 6,00 existing rare illnesses.
80% of rare illnesses have an identified genetic origin. Other rarer illness may come as a result of infection, allergies or be environmental. There are also rare cancers, disorders of the immune system and birth defects.
25% of rare diseases have a molecular basis.
50-75% of rare illnesses affect children.
- Rare Disease Day ® 
- Great Ormond Street Hospital

Some well known rare illnesses include Cystic Fibrosis and Muscular Dystrophy.

The term 'medical zebra' is given to those with a rare illness as doctor's are taught "when you hear hoofbeats, think horses not zebra's"; so to look for the most common cause first behind a person's symptoms. But just like zebra's, rare illnesses do exist, and just like a zebra's stripes we are each unique and no two people, even with the same illness will be the same.


Wednesday, 27 February 2019

GUEST POST by Julie for Eating Disorders Awareness Week 2019 *TW*

*** Trigger Warning ***

When you see the words eating disorder you straight away imagine a vulnerable teenage girl struggling to find her way in the world and the stereotype of eating disorder that many people hold comes into your mind. I was once that girl but that was nearly 40 years ago and I am now a consultant teacher and a mother of three grown up children. 

This is my story…

My childhood was not a happy one and I was abused physically and emotionally on a daily basis. Chaos ruled my world and I was constantly on high alert, dodging abuse aimed directly at me as well as witnessing domestic violence and alcohol abuse. My earliest memory was me sitting in a highchair being force fed egg by my Mum. I remember her screaming ‘SWALLOW IT’ and me gagging and being unable to do what she said. The next thing I knew she had hit me so hard that my highchair had toppled backwards through a glass door and I lay there strapped to my chair covered in shards of glass but luckily unhurt. As I lay there my Dad rushed into the room and began to beat my Mum; leaving me lying on the floor in shock.

So I guess because of my disordered childhood experiences I that is when my eating disorder began. At one point I was threatened with being taken into hospital. I felt lost and alone and anorexia had taken hold of me. With the support of my extended family and my tutor at school I slowly began to recover but no one ever dealt with the underlying issues that had made me get to that point and thus began my lifelong unhealthy relationship between my emotions and food.

Fast forward 40 years and I’m still struggling. Last year various adverse life events coupled with my youngest child leaving home left me severely depressed and suicidal. I rang my mental health team for support and we devised a plan with my CPN [Community Psychiatric Nurse] where I would receive some additional support to help me cope. Later that week after not hearing from my CPN at all despite leaving him phone messages I finally got to speak to him and he said that he had changed his mind and wouldn’t be able to offer me the support I needed after all. In an instant I was back to that hurt little child. My whole world seemed to be falling in around me and I felt that I had no control and was all alone again. In a moment it was like a switch turned on and once again food was the only thing I could control in my life.

I spent Christmas and New Year on a mental health ward being treated for a depressive episode. In that time my eating disorder had taken over once again and I learnt tricks on how to avoid meal times and during my admission I felt that no one cared or noticed. Since being back home I've spent most day in bed still consumed by my eating disorder but I feel the because I don't stereotypically "look anorexic" I'm struggling to get any support.

I desperately want to get my life back on track and get back to work. I know that having a routine and being around people helps me and today I finally found the courage to speak with my GP about my eating disorder. It was difficult for me to admit what I was doing but I really wanted some help and support. My GP rang me and refused to see me face to face. I described to him how I have been feeling and my behaviour and he said that I hadn’t got an eating disorder but my not eating was a symptom of my depression. He lectured me about the importance of having three meals a day and the effect of low sugar on my mood. He then said that he would not help me and would not be able to refer me for any help but it was up to me to sort myself out. 

I put the phone down and cried. He had not heard me. If I had rang to say I was in pain he would have told me to take a tablet three times a day to stop the pain but would have tried to find the underlying cause of what was hurting me. I feel that my eating disorder should have been treated in exactly the same way. I am an intelligent woman and I am not stupid. However he made me feel small and stupid. I know I need to nourish my body to be healthy and I know that I need to eat regularly but at the moment I am struggling. A few days ago I walked around the supermarket for the first time this year and I hoped that something would jump out at me that I would fancy to eat but nothing came to me. 

I am not your stereotypical person with an eating disorder - but the what is a stereotypical person with an eating disorder anyway?
I don’t have a disordered reflection of my body in the mirror and I am happy with the way I look and I don't obsess over numbers. I am simply emotionally lost and hurting and punishing my body in the only way I know so as to deal with all the thoughts and emotions going round and round in my head. I have never been taught any other way to cope and inside I am still that tiny child lying on the floor watching the chaos around me.

My initial thought today was ‘I will show you’ [to the professionals that I am struggling] but I know that the only person that will suffer the consequences of these actions is me. I want to get back to work and I want to get healthy and happy again. I realise that I need to not give up and to keep shouting until I get the support I need and deserve. I will go and see another doctor at the practice tomorrow and if I need to see all the doctors available before I am heard then so be it. I am worth better than this I deserve to be listed to and be supported to thrive.

For information about different types of eating disorders click here.
For help and support form Beat, the UK's leading eating disorder charity click here - this  can be online or over the phone and is open to those struggling with eating disorders of those affected such as carers, family and friends as well as professionals. They also have a directory of local support services.
For Beat's recovery information click here.