Some of my favourite phone apps

So first you can see that I really love my calendar and notes app..

I have all of my apps just on this on screen and then each apps is categorised into each folder - I just don't like having multiple screen of apps.

My Top 10 Apps

(In no particular order)

1. Lists

I would be totally lost without my calendar as in there I digitalised my daily plan which helps me manage my M.E. It also helps me to remember appointments and other things especially things that are out of routine.

2. Home Kit

I like my HomeKit where I can control the lighting in my room via my phone. For me this is more for accessibility as it's easier to tap some buttons or voice control to alter the lighting my room as opposed to getting out of bed which is not realistically an option for me to do. 

3. Expense

This is helps me with my incoming and outgoing expenses to help stay on track with my budgeting. I can create different 'accounts' so unlike on my bank where all my money is just one lump sum on Expense I have different accounts for different types of expenditures. Expense helps me stay on try of what I'm spending to help me try and save.

4. Dyson

This app means that I can control all the many differs feature of my my Dyson Hot+Cool™ fan on my phone as well create Siri short cut commands so for some things I can voice control certain features. 

5. Calendar

I would be totally lost without my calendar. Back when I was in Leeds in hospital and I was given my 'daily plan' (which I use to help manage my M.E) I digitalised this daily plan onto my calendar with alerts for every new event, plus my all time favourite thing... colour coding. What's more now with my life, my calendar and my daily plan is that it is easily adaptable. If I have an appointment I can move aspects of my daily plan around, especially activity and rest periods so that I'm still able to get enough mainly the latter in my day.

I'm a very visual person so I think that where my love of colour coding come in and being able to look at my calendar and see what is going on where and being able to visualise what is going on really helps me know what is going on especially if there is something going on in my week that isn't a typical occurrence.

6. 1SE - One Second Everyday

This is a one year long project.Each day I capture a one second video clip (sometimes a photo) and it collects together over the year to create a film of one second video clips giving a little glimpse into what was done that day. Like right now I am filming a time-lapse video of me typing blog post for today's video clip. Obviously I'm not perfect and I do forget and I do have to back track and fill in missing days. My life also isn't the most exciting one so I try come up with really creative videos.

7. Hip

This is a great app for keeping track of friends birthdays. I have it set to notify me 2 and 1 week before the birthday date to give me plenty of time to make and get a card posted. It also notifies me on the day so I can drop them a message.

8. iMovie

This is the app I use to make all of my video for my YouTube channel so definitely a favourite and essential app to have.

9. Good Reads

I really like the Good Reads app and being able to track the books I've read/listened to. I also have my yearly challenge where I set a target of getting through a set number of books in a year. I can also connect with friends and see what they've been reading and this gives me ideas for books I want to add to add to my 'Want to Read' shelf. When I've finished a book I can also leave a rating and also review. It's defiantly one of my favourite apps.

10. My Water

Monitoring my water intake is really important for my health so the My Water app makes it really easy to ensure that I'm staying nicely hydrated. You input what drink you've had say a 300ml cup of coffee and it will calculate the water balance of that drink which will go towards your daily target. So for me I aim to drink 2.5 litres a day so the My Water app helps me reach that target much more easily.

Disability services I use and would recommend

Radar key

Radar keys help you access disabled toilets and Changing Places that are fitted with a radar key lock. By having a radar key it helps you to access more of these facilities such as for me when I stop off at Peterborough Services my radar key enables me to access their Changing Places facility.

If you don't have a radar key you can get them from places like continence services, the blue badge company, aids and adaptations stores, Age UK, disability rights UK and other places.

Radar keys also come in different designs so the key I have has a large easy to grip key end making it easier for me to hold the key to unlock the door.

Sunflower Lanyard

The Sunflower Lanyard scheme is for people with invisible illnesses/hidden disabilities. Though when I leave the house I'm in my wheelchair I sill have hidden parts of my disabilities whether that be speech or cognitive difficulties, needing a carer with me or having hidden medical devices and other things. So because of this I wear a Sunflower Lanyard to identify to staff that I have hidden disabilities and this helps me with accessing the support I need. Such as one time I was able to bypass a queue into a store when explained that I was unable to queue aided by the highlight of the Sunflower Lanyard I was wearing. I do find that wearing my Sunflower Lanyard does help and staff are more receptive to offering more assistance or aiding my access when I do go out.

I just have a plain Sunflower Lanyard and card but you can get cards for your lanyard that specify different medical conditions or things like autism or that you a carer. You can now get personalised ID cards for your Sunflower Lanyard (which are sort-of similar to the Access cards but a little different).

You can get your Sunflower Lanyard and cards from the Hidden Disabilities website and then head to their shop through the menu.

Continence card

This is a little card that you can carry around with you to explain that you 'can't wait' and need quick access to a toilet. This could be if there is a queue for the toilet, explaining a need to use a disabled toilet (because not every disability is visible) or even in a shop or restaurant to hopefully use the staff toilet if there is no public toilet.

You can get these cards from the IBS Network and also The Bladder and Bowel Community. You can also get these cards for travelling having the same 'can't wait' information in other languages.

Access card

Access cards are a quick and easy way to communicate what your access needs are. On your card you will have different symbols which outline your access needs from having an assistance dog, being d/Deaf, needing essential carers with you or level access. For more information see their guidance on their different symbols.

When you apply for the card you have to explain why you need each access symbol. You will have to complete an application for a card and submit supporting evidence. The card costs £15 and is valid for 3 years.

To find out more check and to apply for an access card got to their website here.

CEA card

The CEA card allows you to go to the cinema and have someone get in for free with you. It is part of providing reasonable adjusts for disabled people meaning they can have someone enter the cinema with you. This means that this additional person is able to then provide if needed any support you may require.

There is a small cost for the card and it is valid for a year. You do have to provide evidence of disability to apply for a card.

To find out more check out the CEA card website here.

Audiobook services

I use several audiobook services, some of which you may be eligible for. 

The first is the RNIB Reading Library. I've been using this for many years way back when they used to send out to me books on a CD to listen to. Then they brought out a way to access their books through an app on your mobile phone instead - however you can still access what they have in their library in other formats.

The next two audiobook services accept a wider range of people to use their audiobook libraries - both are accessed through an app.

The second is Listening Books; like RNIB Listening Books is a charity that enables disabled people to access audiobooks. As well as books newspapers and magazines can also be accessed. 

Listening books does charge a small fee though this may be wavered based on your circumstances..

Sometimes birthdays aren't a celebration

A few weeks ago I had my 29th birthday but since becoming chronically ill in 2013 more and more as the years passed by I've found it harder to see my birthdays as something to celebrate.

This year was particularly hard as turning 29 I'm not where I planned to be as well as the thought that I'll be 30 next year! Back in 2012 and even before then I had my life (well my career as that was my sole focus in life) I'd planned that by the age I am now I'd be advancing in my career in mental health nursing with children and young people ready to start my psychotherapy training when I hit 30/my 30's.

Unfortunately that is not my life now and I know that I need to accept and work with my therapist on making a new plan for my life and to focus on the the present moment. I do practice gratitude and I do aim to celebrate the big and small achievements in my life. Simple things most people probably don't think twice about but for me they are truly are big things like recently managing to Shellac my nails when I haven't felt well enough to do so for a while bringing joy into my life as I love having my nails done.

So yes on my birthdays there are things in the past year that I have "celebrated" but I still find a birthdays a hard occasion to celebrate as I feel like my life is stuck. Most of my "celebrations" are over the small things (which are still important) but there are no big milestones moving my life forward in the way that that I'm wanting it to. Birthdays especially are a process of grieving as I see myself getting older and I wonder things like 'will I ever return to education?', 'will I even have gone on a holiday?', 'will I ever have my my own home?', 'will I even be able to work or volunteer?' and such things. Rather than happiness I often feel sadness on my birthday missing what I had planned for my life to be but struggling to plan a new alternative life for myself that's more accommodating for the challenges with my disabilities. I see my age increasing but I don't see my life going anywhere anytime soon and I feel so disheartened.

I do try to make my birthday a nice day. This year I kept to my usual schedule for the day that helps me manage my M.E and other illnesses. But I put on a facemask I'd been saving for a special occasion (so a birthday is a perfect reason to use it) and I put on some makeup (which always makes me feel brighter). For my afternoon activity I opened gifts from friends. For tea I asked if we could eat something I enjoyed so we had salad and fish finger wraps.

So it was a nice day and I did enjoy my birthday but there was a lot of thinking about 'here and now' and grief over the loss of the life I had planned out and I know now that I need to make a new plan both short and long term and I have started on that, it just takes some healing over the life I've lost.

I really hope that by next year I can truly celebrate my 30th birthday! - I've already asked if I could have some 3-0 balloons as a way to celebrate.

My body is a medical play thing - A poem by me

My body is a medical play thing

medical students and junior doctors surround me

eager to learn

Prodding, poking and flexing my body

trying out things they'd learnt in university

physical exams on an unusual body

Practicing taking a complex medical history

question after question

fascinated with the answers

They surround my bed

disturbing my quiet

when I'd rather be left to be ill alone

It makes me feel that to them

that they have forgotten that I am a person

but instead one of their cadavers 

✦

I've never really given writing poetry a go. At school I hated poetry as my dyslexic brain could never get words to rhyme. However I've been reading a lot of Hannah Hodgson's work and from her YouTube channel she's gotten me interested in poetry. Hannah has made me realise that poetry is more than rhyming it's about expression of our thoughts, feeling and experiences. Hannah writes a lot about her experience of illness and this poem (well I hope it is) is an expression of how I feel from my own experiences.

10 things I can't live without

1. Coffee

I do like to drink tea and herbal tea too but I do like to start my day with a nice cup of coffee especially if has come from my coffee machine. It's my little treat to start the day before Diane my PA arrives and the day begins.

2. Nail polish

I have more nail polishes than a dare count! I love doing my nails and nail art.

Fun fact: I'm a CND qualified nail artist. I did a training course to learn how to apply Shellac. I would love to Shellac my nails more often but it takes time to set up, do the whole application process then tidy especially as I love if I can to do some sort of nail art.

Having colour on my nails always make me feel brighter.

I love looking on Pinterest for new nail art ideas and inspiration.

3. Hot baths

I do find baths easier and I love to have a good long relaxing soak in a hot bath especially paired with my favourite toiletries like Rituals wash products and Lush bubble bars.

4. Audiobooks

Audiobooks are like my lifeline. I am trying to get back into reading, especially poetry which often isn't put into audio format but I'd be lost without audiobooks. When I was recently in hospital all I did was listen to books as well as that when I'm having a bad day audiobooks are great to ease my boredom.

There's a YouTuber I love called Hannah Hodgson and I've discovered some great books from her reviews and Good Reads account and Hannah is the one that introduced me to poetry and has helped me try out books I wouldn't have considered.

5. My friends and pen pals

I'd say that now I'm in a really good place when it comes to the people in my life; I now have a small but positive and supportive group of people around me. I always look forward to my pen pals letters and cards and a lot of my friends will occasionally write to me too. I much prefer to send messages to people in the mail than via text, plus a card and envelope can be nicely decorative.

6. My giant notice board

When we first moved here I asked if I could get a notice board for my room, only my Dad didn't realised that I was buying a 2m long notice board like the size he has in his classrooms at work. However it's now obvious why I need such a big notice board to display all my mail. It's hung next to my bed and it never fails to make me smile and feel loved when I see what I've put up there and I've collected lots of novelty push pins to jazz it up.

7. My iPhone

I've just got myself a new iPhone 13 (in pink with a sparkly case of course!) and I love it. My old iPhone 7 was starting to get old and I also needed a good camera for filming for my YouTube channel so I thought I'd get the iPhone 13 so it would be a 2-in-1 phone and camera. I'm defiantly not addicted and glued to my phone, my average daily screen time is just a few hours each day but I would feel very lost without having my phone with me.

8. My headphones/ear buds

I'm very hypersensitive to noise because of my M.E but also I like to tune noises out around me like the hum of my air mattress or the sounds of the hoover or other people's music (accompanied with their humming and singing along to the music) and instead tune into whatever I'm listening to whether this be an audiobook, podcast or my own music.

9. Polly

Polly is my doll which I got for my first Christmas and she's still with me though now a little floppy. Polly would most likely be the first thing I would try to rescue if there was a fire. When I was a child wherever it was I was sleeping she would HAVE to come with me but now I can go away and leave her behind.

10. My craft supplies

Where do I start with what crafts I've got! Crochet, card making, decoupage, block printing, painting, macramé, origami, colouring (and probably other crafts too)! Crafting is my thing, it's my hobby and enjoyment and I love making pretty things to send and put in letters to friends and pen pals. I'm also always up for giving new crafts a go and there are some things on my list like I'd love to make some things with resin but I'm trying to use up some of what I already have first but what I have seems never ending!

I've been missing since 2013

The 12th May marked M.E Awareness Day. I have been missing since 2013; the life I had planned out for me back in 2012 is now just something I dreamt up. I can't think about the past of the future, I must focus on the hear and now; getting from one hour to the next and at the end of the day it's exhausting to know that I will have to repeat all my daily struggles once again.

I started to become unwell in 2013 - that's sort of when my initial symptoms became progressively worse but becoming unwell was something gradual and I just thought it was because I was overworked at Uni and in February was when I had to leave Uni.

Over time my health worsened; I kept going to my GP and was repeatedly told that I had Post-Viral Fatigue Syndrome and my symptoms would ease. But they never did and my symptoms slowly worsened.

Fast forward to the 4th July 2017. I had my first appointment with my FND neurologist and in that appointment my diagnosis of FND was confirmed though some of my symptoms didn't fit with FND and so I was also told that I had M.E. Before the I hadn't heard of M.E and there was no further forwarding referral to an M.E service so I was left to go home, research M.E and find out how to live with it.

I'd say back then my M.E would have been classed as 'moderate' on the M.E Disability Rating Scale but now my M.E has been classed as 'severe' but personally I feel that whether your M.E is mild or severe it is still a difficult illness to manage not just practically but in terms of how poorly understood and under funded and researched the condition is.

Since 2013 I have been missing from education, meeting friends, going to social events, going on holiday, employment, voluntary work, on my bad days even leaving my bed and more. M.E has left me feeling invisible to the world and I only really see the same few faces. 

M.E has left me dealing with a myriad of different symptoms affecting my whole body including immune system - it is much much more than 'simply feeling tired'. 

I feel some days as though M.E has taken over and I'm not me anymore; I am M.E.

I try to be positive as the alternative is to be miserable and I'm not one of those 'woe is me' kinda people. When I first became unwell I did feel like being ill was all I had in my life but when I had some sessions with a health psychologist I started to see the other parts of me. I still have to work within the restrictions of my M.E and make adjustments when it gets worse as it has done lately (hence my lack of blogging as well as just sharing videos on my YouTube channel when my health allows) but it's all about balance as currently there is no cure for M.E.

I'm not quite sure how to end this blog post. I've just been typing here and there as my body allows and ironically I seem to have finished this post on a Tuesday which was the day that I used to post on. 

I think in this post I wanted to briefly share the timeline I've been on and also how invisible M.E makes me feel as well as being part of the millions of people missing due to M.E. I wish I could say that M.E is getting greater understanding and research but sadly that is not the case. Just know that if you also have M.E as invisible and missing as you may feel you are not as alone as you may feel you are.

I'm back! - Plus my recent hospital admission

Apologies for not posting for a few weeks, I had rather a lot going on with a combination of not being too well and preparing for my hospital admission.

Last week I had surgery at UCLH in London (my specialists are all down there). Compared to my local hospital the care I got on hospital was amazing. I'd been in contact with Sarah the special needs co-ordinator to ensure that my needs where met whilst I was in hospital such as ensuring I had a side room but also just to ease my anxiety. I was also given a bed the day before my surgery as I lived so far away from the hospital to save me travelling in the night and going more-or-less straight to theatre.

My hospital admission didn't get off to a good start. The night before my admission I called patient transport to get a pick up time for the following morning and was told that my assigned crew had tested positive for covid. Both myself and Dad kept calling for updates but eventually we where just told that I would't be getting transport. This was so hard to hear as long distance travelling takes a huge toll on my body and I require someone sat with me in the back of the ambulance in case I become unwell and I also need to travel on a stretcher. Thankfully Dad's a teacher and was off for the holidays and he didn't want me to miss my surgery or waste NHS money especially as my surgery was a special arrangement. So Dad drove me down and we got to UCLH. 

Dad couldn't see me to the ward as there where no disabled parking spaces so he could only drop me off in the atrium. The receptionists couldn't find me and I was getting in a panic. So I called Sarah and she came and met me and helped the receptionist's find me and them Sarah saw me up to the ward and my room.

I was very well prepared with my hospital passport and having my own room was so helpful as I could make it a better environment for me with the blinds down and it was quieter and I didn't have to worry as much about picking bugs up from other patients.

The staff where lovely; introducing themselves to me as my assigned nurse, ensuring I had all female care. Call bells where answered quickly as was medication when I asked if I could have pain relief or anti sickness. I felt listened to like when I said that due to my PoTS when I'm nil-by-mouth I'd need supplemental IV fluids. I also felt like the staff had time for me such as to help me get comfortable and changing positions to relieve my pressure areas and regularly checking my pressure areas as well as helping me with other care tasks and also getting a wash and a fresh change of clothes or just to talk about the audiobooks I'd been listening too or even just making me a coffee. So often in the past especially in my local hospital my care experiences where so different; waiting and waiting for my call bell to be answered, for pain relief to be given to me or wet clothes and bedding to be changed, bing told I have to wait for catering to have a drink etc. Also at UCLH though I didn't eat much due to my nausea the meal I did manage was really nice - chickpea and spinach curry.

My surgery went well and they knew before that I was at high risk of seizures post-op so I was given lots of medication to reduce my seizures and I was ITU for a few days after my surgery. I was put on a PCA, Patient Controlled Analgesic, so I had a button that I pressed whenever I needed some pain relief without having to ask the nurses. 

During my admission I got through plenty of audiobooks!

The journey home was difficult as I found the ambulance too bright and the transport crew where blasting music plus the motion of the vehicle so I just put my noice cancelling earbuds in and listened to my book and managed to sleep for a while.

When I'm in hospital I do like having the nurses take over my care giving me a bit of a break but I am glad to be home in my own bed and I'm just resting. I will admit I have felt quite low emotionally. Plus coming home of the Easter Bank Holiday I haven't been able to reach the community nurses or my GP practice. My nurse is coming on tomorrow (19th) and Diane, my PA, is back Wednesday so I'm just muddling though as best I can.

I want to give a shout out to my friend Elise who has been so supportive helping me out with advice, tips and support. It was also lovely to come home to mail from friends and pen pals.

Currently I'm just taking each day moment by moment both practically and emotionally. I've got at lot to deal with and I'm hoping I'll fall into a rhythm soon and that I'll have the energy to do some crafting soon as I have a few birthday's coming up and letters to reply to.

Payback | M.E Symptoms

Payback is one of my key symptoms especially in regards to my M.E. With everything I do I have to pay for it to varying degrees. Sometimes the payback isn't too bad and I'll just need to rest and take it easy depending on what I've done. If I've done a 'big thing' (which to most people probably isn't a big thing) the payback will be more severe and will include me experiencing Post-Exertion Malaise (PEM) - a key symptom of M.E.

Some of my payback and PEM symptoms include a flare-up of symptoms including increased pain; fatigue; malaise (generally feeling unwell); my immune flaring up in which I experience severe flu/viral-like symptoms; reduced cognitive function; headaches/migraines, autonomic issues - the list goes on. Basically my body just has a massive tantrum because it's had to do something!

Experiencing payback is really difficult because I have to do things and even with most tasks having the support of my PA, Diane, I still get payback but having my PA does really help to make life much easier for me. Some of what Diane does helps to minimise at times the level of payback I experience. So for example getting a bath is something I have to do and it's very exhausting for me. I do what I can in the bath, mainly washing my face and brushing my teeth and the rest of everything that needs doing Diane does. - See my vlog with my PA where I share the different ways in which Diane supports and enables me.

People often jump to M.E being about "feeling tired" but often people miss what exacerbates a person's fatigue (as well as the severity of a person's fatigue as well as the many many other symptoms of M.E which people don't comprehend and just jump to "feeling tired"). Payback is what adds to the fatigue and other symptoms of M.E. Yes I do feel tired with little reason; I wake up feeling more tired than I went to bed!

Payback is like a dripping tap. As your day goes on every little or big things you do has a drip drip effect and each drip (a) takes more of your precious limited energy and (b) fills up your little cup of fatigue. I say a little cup as it doesn't take much to overflow the cup to leave me utterly exhausted the point where that's me done for the day.

There are things that I find helps me to manage the payback (and other aspects of my M.E). Pacing and activity management play a huge part in helping me get through the day. I limit activities, depending on the activity to a set time period so I'm not doing an activity for longer than I can reasonably do. During the day I do a mixture of low-level activities (like laying and listening to a podcast episode) to more energy taking activities like crafting or letter writing. I also have set periodic rest periods for 30-60 minuets during the day to allow my body to pause. Resting doesn't recharge my energy levels and give me energy back but just stopping quite literally really helps me to just keep going until I can wind-down for bed.

Another little update

Since my last update back in June a lot has happened.

Firstly I had a nice Christmas. It was quiet and low-key which made it much more manageable especially for my M.E. Also over the Christmas period it was good to see my wider family who we don't see often including two of my cousins who I haven't seen in several years.

Health update

My health has been going downhill. My M.E is much more of a challenge; I think it's just been an accumulation of events and my body has struggled to recover before I hit the next hurdle. At first I thought that the state that my M.E is in now would be temporary but months on of feeling permanently exhausted and struggling to function I'm now having to accept that this may be my 'new normal' from now on. However what has help this time compared to previous declines with my M.E is some of the things that I learnt during my hospital admission in Leeds. So now I do more low-level actives, do activities for shorter periods or break them down more and have more and stick to my rest periods and daily schedule.

On top of that I've developed some additional neurological symptoms which my FND neurologist is part of condition which can alter and new symptoms can develop. These new symptoms include speech difficulties, increased muscle weakness and also increased problems with my nerves - the latter two making my double vision worse so I'm now back under the hospital for that. 

I also have a new nurse who is lovely. She's from the 'Chronic and Complex Team' so she's going to support me to try and get some things sorted for me ad come up with ways to reduce my hospital admissions and get community care and refer me and co-ordinate my care and work on my behalf with people like my GP.

Another update is the confirmation of my catheter operation. It's been cancelled a couple of times due to my complex needs but it's now confirmed and I'm due to be admitted on the 12th of April with my surgery being on the 13th - they booked a bed for me so I can travel the day before as otherwise I would have had to travel in the early hours to be at UCLH for 7am on the 13th! I'm nervous but looking for to the benefits having a catheter placed will bring.

I also now finally have a hospital profiling bed at home and my new nurse has prescribed me a hybrid mattress which has air flow in it which is massively helping with my pressure areas and my bed is making life much more comfortable and giving me more independence.

My care package

Yes another update is that I now have my care package from adult social care along with a good social worker and fab PA (I'm needing some extra PA's so hopefully I will get some extra people come along soon).

YouTube & my blog

I absolutely love my YouTube channel. My goal at the end of last year was to get to 100 subscribers and this year I wanted to reach 200 but I'm very almost at 200 subscribers already which is so so lovely. Seeing my subscriber and video watch count numbers grow really does make my day and motivates me to keep going as having a YouTube channel alongside my health problems, especially my M.E is really really hard and at times it is struggle.

I've also had a lot of success with my recent vlog video that I did with my PA Diane and I had a lot of positive feedback and comments and interaction with people. Also the recognition from the M.E Association from this video has been amazing in terms of how my blog and YouTube channel help to raise awareness of M.E.

Blog wise the M.E Association have chosen me to become one of their M.E Champion Bloggers which the recognition of the work I put into my blog and to raise awareness of living with M.E feels amazing.

Other random updates

I continue to be an ambassador for the Chronic Warrior Collective and I'm part of their 'Extra Card Crew' - sending mail out to those having a tough time. The CWC has also asked me to be part of their 'Artist Crew' to design cards used by those in the Extra Card Crew and with their wider projects and in the recent pack of cards I got from the CWC it was lovely to see two of my card designs have been used.

It never gets easier... Eating disorders and what needs to change

Fact: eating disorders have the highest mortality rate of any mental illness

As a teenager I was very unwell entrenched in an inner battle with anorexia. I spent time in several inpatient stays. What saved me was psychotherapy though my eating disorder is still something that stays with me to this day.

On Sunday I heard of another person I knew closely from one of the inpatient units I was in who had passed away. 

I now now 6 people who have passed away from eating disorders, some have passed away from the illnesses itself others have ended their own life. Some where still very much unwell when they passed away others where well but had lasting damage to the body. Even my body has taken a toll from my own eating disorder.

Every time I hear of another life sadly lost it still hits me hard and never gets easier. At 28 I feel too young to know too many young lives taken too soon.

I still feel that more needs to be done to prevent these tragedies. Still far too often early intervention isn't happening; something I've been part of campaigning for for a lot time. More awareness is also greatly needed in places like schools and by primary care professionals such as GP's to aid early intervention and to support people like GP's to manage those who first start to show signs of developing an eating disorder. Also, something I felt was also missing was the care, or lack of, when I was discharged. I was seen by mental health services but they weren't specialists in eating disorders.

There needs to be better access to specialist eating disorder services - I know from personal experience that even when there is a specialist eating disorder service it is hard to get help from them. Often their main acceptance criteria is your BMI which is totally wrong. If you've been discharged from an impatient unit but need ongoing support post discharge your BMI will be within the normal range as well those who are in the early stages of developing an eating disorder will also have a normal BMI and for some types of eating disorders their BMI will remain within the normal range. So BMI shouldn't be used as an admittance criteria for help and support from an eating disorder service.

Goodbye Hayley

I also feel that the media need to be more responsible and thoughtful of how they approach the subject of eating disorders. There are many things that I find unhelpful when I read media reports around eating disorders and I can speak from personal experience when working with the media myself to help raise awareness of eating disorders. Awareness and facts about eating disorders need to be the focus; not a person's weight or a photograph of them when they were quite unwell.

Finally I just want to end this post in memory of Hayley and everyone else who is no long here. Hopefully the inquest for Hayley will help bring improvements for those with eating disorder and something will come from her loss.

How my PA supports and enables me | YouTube video [CC]

Diane is my PA (Personal Assistant). I filmed this vlog over 3 days to share with you the many different ways in which Diane supports and enables me to live my life, from helping wash and dress, to going out and getting coffee to taking me to hospital appointments. Diane has been my PA for nearly a year now and we get on really well which is what you need from a PA as you spend so much time with them. We've never yet run out of things to talk about and we can have a laugh about things too. Even though we do seemingly fun things like going for coffee it's benefitting my social and emotional wellbeing as the vast majority of the time I'm housebound (the week filmed was very very unusual as I went out twice that week - normally I only go out once a week max). Also I need Diane's support when I do go out because of my medical needs such as when I had a seizure at the hospital (probably because my body was exhausted from leaving the house). Also with Diane being my PA for a while now she has become attuned to my routine and care needs from what toiletries I like to go together to managing my health care needs like when I have seizures or pass out. 

Before Diane came along I didn't know anything about the role of a PA and now I can see what a rewarding job it can be as Diane supports and enhances my life so much and in so many ways, even if it is just enabling me to enjoy a nice long hot bath. Becoming a PA isn't for everyone but it's a career I would encourage people to look into.

Click on the video to watch on YouTube

If you haven't already subscribed to my channel and you would like to (you don't have to) but it would be lovely to see you become a new subscriber and every time I do get a new subscriber it really does make me happy as I love my channel but being a disabled YouTuber it is a huge challenge.

Living without a diagnosis

When I first started to become unwell in 2013 no one could tell me what was wrong with me; my symptoms where just 'medically unexplained'. At first I just thought things would be temporary. However as time went by my symptoms continued and worsened and as they did and I still received no answers I started to question myself. Names for illnesses floated around but nothing was certain and my symptoms remained 'medically unexplained'. It frustrated and upset me as what I was going through was real, especially the times when I wasn't believed or was told my symptoms where psychosomatic or 'all in my mind' which lead to receiving poor care from professionals.

Living without a diagnosis was so hard as when I went to the hospital or saw another professional like my GP or when I was asked what was wrong with me I had no answers to give. It was so difficult on many levels as what I was going through was real but it wasn't backed up by a diagnosis. Having no diagnosis to give also made it hard when I was applying for ESA and PIP - government benefits for when you're too unwell to work or to cover the extra costs incurred due to having a chronic illness/disability. Having no diagnosis also meant that I got little in the way of treatment for my symptoms. I would have a seizure but paramedics where reluctant to give me the medication I needed or my GP was hesitant to prescribe medication for my symptoms as there are no prescribing guidelines when you don’t have a diagnosis or would have nowhere to refer me to for specialist care. Other aspects of my 'medically unexplained symptoms' where also met with lack of surety such as believing that my joints where actually dislocating or I was having the amount of migraines I was claiming to have. With regards to my high levels of fatigue my GP on a number of occasion did diagnose me with 'Post Viral Fatigue Syndrome' but I was told that I would soon recover, but I never did.

It wasn't until the July 4th in 2017 that I was told I had M.E. (Myalgic Encephalomyelitis) by my neurologist Professor Mark Edwards. Finally I could stop blaming myself for what I was going through and the symptoms I was experiencing were real and not imagined or 'all in my head'. I had a name to give to people to explain why I was having this symptom or that symptom. Further to that my neurologist noted my hypermobility and referred me onto a rheumatologist and later I would be diagnosed with Hypermobility Spectrum Disorder/Ehlers-Danlos Syndrome (over the years professionals have used both HSD and hEDS but there is little difference between the two). 

Looking at that particular diagnosis it took me back to my childhood and there I can now clearly see the signs of my EDS then. EDS is a hereditary connective tissue disorder; it was something I was born with but as often the case with EDS many people with the condition don't get their diagnosis until they are much older. I was born with a spinal curvature, hyperlordosis where my lower spine acutely curves inwards. I'm no stranger to back pain and joint pain due to my hyperlordosis but growing up my joint and related pain was always dismissed as 'growing pain' but now I can clearly see the signs of my EDS. I was a dancer and being hypermobile I used it to my advantage despite my pain. But again looking back my "growing pains" where dismissed as that and no one looked further into it.

I must say that many people are hypermobile to one degree or another and a lot of these people use it to their advantage, especially dancers, gymnasts and athletes. However the vast majority of those who do have hypermobility do not have EDS. Hopefully one day like the other forms of EDS a genetic marker will be found to help give people like me diagnosis, especially treating the condition early on such as when I was younger instead of leaving it until I was older and had developed many complications as a result of my EDS.

Coming to the present day I now have other diagnosis, often ones that come secondary to my 'main' illnesses, such as PoTS (Postural Orthostatic Tachycardia Syndrome).

Now I have a diagnosis (or a few as the case is now) means I can get the care I need as generally when you have a diagnosis you have NICE guidelines to tell professionals how to treat and care for me. I've also found that now I have names to give to people like when I dislocate a joint I can explain that I have EDS or my extreme fatigue is because I have M.E. and it’s more than ‘just feeling tired’. Most of the time my symptoms are now understood, though I do find myself in situations where I'm not believed because my illnesses are not that well understood. On the whole though now I have my diagnosis' things are much better and though my health isn't great I'm getting the care and support I need compared to the time when my symptoms where 'medically unexplained'.