Friday 30 March 2018
Last night I was home alone and my legs went numb and I had a fall and couldn't get myself up. Normally I'm fine because I live with my parents so I got myself into a bit of a muddle so I pressed my SOS alarm as there's a malfunction with the falls detector at the moment on my watch. I got a call from one of the care managers and there wasn't any carer's available to come out to me so I was advised to call 999, but I said that I'd call 111 first and see what they say and there's nothing that GP out of hours would be able to do. So I called 111 and they sent an ambulance out to me. In my fall I had dislocated my shoulder and my hip had subluxed and I was in a bit of pain and as a result my myoclonic seizures where playing up alongside the fact that my legs had gone numb. I managed to wiggle to the door to get it open and sat and waited for the paramedics to arrive. The crew that came where brilliant and I was there second hypermobility call out of their shift. They went with my suggestion of entonox to try and ease the pain and get my joints back in place and I'd trapped and nerve in my shoulder and they gave me some of my own oramorph and later co-codamol. After a while my pain was better and my joints where in a better shape that when the crew first arrived. They then got me onto the lift cushion to get me up off the floor to minimise and further injury. By this point about an hour had passed and the paramedics where happy to go at my pace. Getting me off the floor and rubbing my legs started to get some feeling back into them and we managed to gingerly with their help get me to the sofa. They them made me coffee and got me some biscuits as my blood sugars was a bit low and got me settled for a night on the sofa. I had the sign a the tablet to say that i was declining a trip to A&E - from the outset I made it clear that I didn't want to go there and there was little they could do for me there anyway and I would be much happier to get my pain better controlled and off the floor and onto the sofa. It's kind of restored my trust a little bit in paramedics after a year of receiving such poor care. I then put the TV on and settled down for a night on the sofa. But having my SOS watch gave me piece of mind that there is help should I need it and, it was just unlucky that the night I had my accident was the night Dad and Mandy was away!
Sunday 25 March 2018
FND stands for Functional Neurological Disorder, is can also be referred to as FMD or Functional Movement Disorder depending on a person's symptoms. It is an umbrella diognosis for and number of symptoms. FND affects each person uniquely, some people just have one or two symptoms, whereas others may expererice many symptoms.
FND is a problem with the brain's messaging system. Basically the hardware (body) works but the their is a malfunction with the software (brain).
Symptoms may include:
- Involuntary movements
- Mobility issues such as poor gait and balance
- Chronic pain
- Bladder and bowel problems
- Impaired cognitive function such as poor memory difficulty thinking and concentrating etc.
- Speech difficulties
- Vision changes
- Headaches and migraines
- Muscle weakness and/or spasms
- Sensory disturbances, such numbness and neuropathic pain e.g. pins and needles
Thursday 22 March 2018
How Stage 2 works is over three days you trail a food, for example with bread on day 1 you have one slice of bread and then see how your symptoms are, then on day 2 if you're symptom free or have mild symptoms you'll have 2 slices of bread then on day 3 3 slices of bread depending on day 2 symptoms. However, if symptoms are severe you just stop and will know to rule that out of your diet form then on. Today I've have one slice of wheat bead and I've had some symptoms but I'm wanting to continue to day 2 just in case is psychosomatic and just to be sure before I do cut bread out my diet but I have feeling that wheat bread will be a no-go for me based on my experiences so far with the Low FODMAP diet. After trialling a food you then go back onto total low FODMAP for three days to clear out your system and then you move onto the the next food trial. If you got symptoms during the food trial and they're severe enough to stop you prematurely stop the trail and have 3 days total Low FODMAP again to clear out you system.
I'm not particularly looking forward to Stage 2 as it will mean putting up with reactions and symptoms but hopefully it will mean that after after finished, which will take a few months my diet will be less restrictive.
Because cutting what and gluten out of my diet has been successful and helped with other things like my chronic daily headaches and skin rashes the Dietician suggested testing me for Celiacs Disease after I've finished the Low FODMAP diet. The only downside to that is that I'd have to got back onto a wheat and gluten diet for at least 6 weeks for them to then test me for Celiacs Disease.
Monday 19 March 2018
Then today on my way back home in Patient Transport I went into a prolonged seizure and ended up in my least favourite place - A&E and received the usual lack of "care".
There are two sorts of illnesses according to the lead consultant - organic and functional; as my two main illnesses (which to him like my GP aren't "actual" illness) FND and M.E. are functional illness three is no treatment so it's just a case of "putting up with them" as the consultant put it. He seemed vary un-understaning and unwilling to help me in ay way which just upsets and funstrats me. Especially when nurses have the attitude that I'm feigning or just playing up. All i can really do is try my hardest to avoid A&E and email my neurologist again and copy in my care agency's nurse to keep her in the loop in the hope that we get some sort of care plan put together. I'm also going t chase up PALS (Patients Advise and Liaison Service) as I haven't heard anything back from my last complaint about my previous "care" in A&E.
What I really don't understand is last year I used to get some good care in A&E at times and get medications to bring me out of my seizures and now that's all ceased to nothing bar a oral diazepam tablet put into my semi-conscious mouth and maybe some oral paracetamol for the pain.
I also got some not-so-good news today about my video telemetry test which is going to be even further away than originally thought due to long waiting lists and shortages of staff and beds so rather than it possibly happening April/May time its looking like June at the very earliest, possibly even longer (I've been eating since last July for his test). We're really needing this test to happen to rule out/in epilepsy as a contributor to my seizures and also so a proper care plan can be put in place. I'm also still waiting for funding to be approved for my neuro/functional medicine rehab placement in Leeds so I have it on my to-do list to find out the contact to see where we are with that as once that's been approved I can go on the waiting list for a bed.
Tomorrow will be a day off resting and trying to locate my glasses which went missing somewhere in the ambulance yesterday and they're my best glasses as they're my Cath Kidston grey tinted lenses ones that I use when I'm struggling with light sensitivity and I curently only own one pair of grey tinted lenses, but I'm at the opticians on Wednesday so I'm going to get a second pair as I've found the tint really helpful and they don't look as bad in public compared to my purple Irlens lenses.
Right, I'm going to finish there as I'm getting tired and nodding off as I type.
Monday 12 March 2018
So last week I went over the bridge to Hull togo the The Deep with my carer for a day out. I went for their "Tranquil Tuesday" and called up to check that the event was happening and was told it was an all day even but when we got there we found that "Tranquil Tuesday" was after 3pm and we arrived at 12pm with 200 school children in the building. I and also the call handler may have gotten mixed up with their "Quiet Day" events which does make things confusing having two 'quiet events' on so in future I'm sticking to the Quiet Days as I really enjoyed that day when I went in the past - they have no school in and turn the lights up and he sound down so much much calmer!
Children and wheelchairs don't quite mix - in their excitement they want to be at the front of the tank and don't think about the wheelchair they've pack in around and that I can't see tank or that I can't manoeuvre my wheelchair anywhere. Plus I really could have taken my ear defenders with me!
The staff at The Deep where really great though and I got my entry ticket refunded over the confusion of the day's events. The catering the in the cafe is brilliant for allergies too - I managed to get a dairy, wheat and gluten free meal! The cafe also have wheelchair friendly tables and when we couldn't find a spare one in the main dining area two members of staff showed up to the upstairs dining area which was much nicer and quieter, plus it had a great view, and they asked us if we could fill in a comment cards comments come better from visitors than staff alone so we said how allergy friendly the cafe was but it would be better for the "wheelchair friendly tables" sign to say "reserved for wheelchair only" so that non-wheelchair users think more about where they choose to sit. We also said how the drinks mugs could be made bigger! (You an never have a big enough mug for Yorkshire Tea!) We also noted how helpful the staff were.
There's a huge range of animals at The Deep from colourful neon anemone's, tropical fish, animals from the Amazon including vegetarian piranha's, snakes and poisonous dart frogs and even penguins. One of my favourite animals are the jellyfish - I find them fascinating creatures and amazing to watch them move. I love all the colourful fish and anemone's too.
It's a day I'd really recommend and if you're a fellow spoonie I'd plan to go after 3pm (they close at 6pm) when the schools have gone home or go on one of their Quiet Days events which have BSL talks too, plus your entry ticket is valid for a year and carers get in for free.
I took lots of photographs but below are a few of my favourites...
Monday 5 March 2018
Some statistics from Beat...
- It is estimated that 1.25 million people in the UK have some form of an Eating Disorder but this number doesn't include those undiagnosed or recognise they are ill.
- Eating Disorders don'e discriminate, they affect anyone of any age, gender, race or background.
- It is estimated that 1 in 4 suffered of Anorexia or Bulimia are male.
- 4% of the UK population will suffer from some form of eating disorder int heir lifetime; many more people will be affected by the effects such as friends, family member and colleagues.
- There is no one single cause of an Eating Disorder, research is being done to understand more but it is likely that is is a combination of genetic, biological, psychological and environmental factors.
- Eating Disorders are no about food or weight but instead the behaviours are about a way of coping with difficulties and feeling in control.
- Anorexia has the highest mortality rate of any mental illness.
- Eating Disorders cost the UK economy £16.8 billion pounds per year - £4.6 billion in treatment cost to the NHS; £3.1 billion costs to suffers and carers; £1.1 billion to private treatment costs and an £8 billion pound in loss of income to the economy
- 32% of people feel discriminated at work because of their eating disorder.
- 41% wait more than 6 months for a diagnosis and/or treatment
- Research into Eating Disorder is severely underfunded - 15p on eating disorder research per adult affected verses £1,571 on cancer
- The key to recovery is early intervention which often doesn't happen.
- Suffers of eating disorders are 50% less likely to relapse if treatment is sought immediately.
- 11% of suffers are left with with long-term psychological and physical problems for example osteoporosis.
- In some area of the country in 2014 suffers waited on average 182 days to access outpatient treatment.
For more information visit www.beatingeatingdisorders.org.uk.
My struggle with my mental health probably spiralled when I moved to secondary school. I always struggled to some extent and when as a teenager I was diagnosed with Disorganised Attachment Disorder which made total sense as to why I struggled as a child with my emotions and with friendships and people in general.
At secondary school I found the transition hard. Most of my class (which was my year group) from primary school moved up into the same secondary school as they where both linked. Over the summer my 'friendship group' from primary school suddenly grew up and when we moved to secondary school I felt left behind. I also HATED the change between classes - all the people and loud noises and getting squished and squashed. I used to dread it. I also avoided the canteen like the plague. It was too small and too loud and had far too many people in it for my liking. Instead I spent my time with in the library or the music classroom as I got on well with my music teacher.
I was also badly bullied and it wasn't just by one person or group of people - if it wasn't one person/group picking on me then it would be another person/group of people. There was emotional bulling, verbal bullying and physical bullying. Things like name calling, taking my bag and emptying the contents down the corridor, even one time throwing a chair at me. I was a bit of a ticking time bomb - I was easy to wind-up and reacted with explosive results and I struggled to manage my emotions due to my Attachment Disorder. Even my so-called "friends" bullied me.
My eating disorder began gradually and developed over time, creeping up on me. It started by skipping lunch at school so as to avoid the canteen and be able to spend my lunch times elsewhere where I was safe from the bullies and so I could be alone.
Skipping lunch soon became a game with myself - a battle I was winning over the hunger and I liked the control I asserted over my hunger and the strength I found with myself. I couldn't beat the bullies but I could beat myself.
I became obsessed with numbers, I learnt the numbers in most foods. Food began to scare me. And this fear and obsession overspilled into my chaotic home life. Mealtimes became a game, skipping them and a battle of wills and I became a pro.
All the time my mental health was breaking me apart - alongside the eating difficulties I battled with depression and self-harm too and I was all alone with this. I first opened up to my music teacher about my self-harm who didn't give me the best advice or support. Then during an annual appointment with my paediatrician (whom I trusted and I'd known since I was small) it all came spilling out - my struggle at school; the bullies; how low my mood was; my self-harming and my eating behaviours, thoughts and difficulties. He diagnosed me with Clinical Depression and Anorexia Nervosa (restrictive subtype) and a referral to CAMHS (Child and Adolescent Mental Health Services). Suddenly I went from seeing my paediatrician yearly to twice a week and I started seeing a dietician who wanted me to follow an impossible meal plan and had zero idea of the mental battle I was fighting.
My music teacher was made aware of my new found diagnosis'. Shortly after my diagnosis we went on a residential school trip. I remember that first night; on my plate was tricolour pasta and peas and sweetcorn which I couldn't manage to consume despite my music teacher sitting with me encouraging me to eat. That night one of my so-called "friends" told me that "I made her feel fat" because of my actions that meal time. I felt so hurt as she had no idea what I was going through.
After my diagnosis of Anorexia in October I went downhill very quickly. In November I took an overdose and my referral to CAMHS was made urgent and I was seen that day by someone who later changed my life. She was the first person to truly listen to me. I started seeing her several times a week but my Anorexia was out of control. I was regularly in and out of A&E for things like hypoglycaemia (low blood sugars), fainting, hypokalaemia (low potassium), injuries form falls including fractures, and pressure sores. Just before Christmas the decision was made to section me under the Mental Health Act. I was sent to a CAMH's inpatient unit in York - the nearest bed in the country. From there things only went bad to worse, I was tube fed, regularly restrained and sedated. I bounced around several different units in the country, taken in by whatever unit could meet my needs physically and with my behaviour. As well as being stuck deep within my Anorexia I was severely suicidal, chronically self harming and clinically depressed. I found it hard to see a life free of mental illness.
The main issue I found with inpatient treatment was there was a huge focus on weight restoration and the emotional side, such as the offer of psychological therapies was severely lacking which is why I believe is why I was so stuck within my Eating Disorder and struggled to recover.
My home life was a chaotic too but in my last inpatient CAMHS unit I had a good social worker who helped to make home life less chaotic. I cam home after a long time in hospitals and received intensive psychoanalytic/psychodynamic psychotherapy in the community. This therapy was with the lady who first assessed me take first time when I took my first overdosed. She had kept me on her case load all those years and was the only person in my care team to attend every meeting about me when I was in hospital. I firmly believe that she was the fist person I developed an attachment to given my Attachment Disorder. Therapy wasn't easy and there was many ups and downs. I also saw the psychiatrist with my therapist once a week. She stood by me regardless of what I threw at her (not literally!). There where occasions when I needed to be readmitted to the children's ward at the local hospital but my CAMHS therapist still came and saw me for our sessions or made arrangements for me to be escorted over to the CAMHS building as it was on the same hospital site to give me some stability and consistency in my life. Over time I began to open up to her but it took some time and a lot of trust and she helped me find my voice through writing and creativity and began to see freedom from demons, but I still felt trapped.
Like my transition to secondary school the transition to adult mental health services wasn't easy. The adult Community Mental Health Team (CMHT) wasn't able to offer me the intensive support I needed or the psychotherapy I needed to continue. I spent time on adult psychiatric wards but again the main focus was just a sticking plaster to get me home. There is a local Eating Disorder Unit which helped me and the psychiatrist who used to work there was amazing and there was another team member but after they both left the service wasn't quite the same.
I still struggle at times today but I'm a long way from where I was ten years ago. I will always say that I'm in a state of "recovering" and my Eating Disorder will always be there in some way; its just a case of learning to be the one in charge. There are still things I struggle with such as eating out and clothes shopping but hopefully one day those things will become less scary. I can now go for coffee with a people and can mange to eat small things which has given me a lot more freedom and gives me more options in life.
I also have Complex PTSD which I use my eating disorder and destructive behaviours as a way of coping but I'm developing my coping toolkit (a literal one).
I don't regret my past; I've learnt a lot and its opened up a lot of opportunities to bring change and improve care for other children and young people who are struggling with their mental health. I'm a Young Ambassador for the Eating Disorder charity Beat, and I was a VIK for Young Minds. I've also spoken in parliament. I am on the board at the Royal College of Psychiatrists acting as a voice for children and young people and spoken at conferences and round table meetings for various charities and taken part on many different research projects. I see my work as turning my negative experiences into positives.
If you see someone struggling take time to send them a message or some mail. It could really brighten their day and let them know that they're not alone in the world and that their is hope and freedom waiting for them. H.O.P.E - Hold On Pain Ends
It reached boiling point on my 21st birthday. As others that age would be out celebrating with friends, I was in the hospital staring at an apple a friend had brought me. They had decided against cake to lighten the mood, and so we stuck a candle in the apple and celebrated that way. I still didn’t eat the apple that night.
Sunday 4 March 2018
Saturday 3 March 2018
This Eating Disorder Awareness Week I really want to focus on something that’s helped me with recovery. For many years I’ve posted from my hospital room, yet today I’m writing from my bedroom.
Recovery use to be something that applied to other people. I’d hear girls in hospital discuss what they missed from life before their illness and how thinking of their old lives motivated them with recovery. I’d be encouraged me to think of the life I had before, to think about the ‘old Emma’. I’d smile but the reality was I couldn’t remember who I was before I got ill, even if I could it wouldn’t be a life to return to, I was only 9.
I started to think I would be ill for life. Instead of aiming for recovery I just aimed to stay out of hospital. I resented hospital, I’d be held against my will not able to leave till my weight increased enough to tip me out of the critical stage. 10 years into my illness aged 19 I decided I wanted to volunteer in Africa. I think everyone realised that 3 months in Africa, alone, with no one there to make me eat was going to end in disaster. I wouldn’t listen to those begging me not to go though and 8 weeks in I woke up unable to move. I was taken to hospital where I was admitted straight to intensive care. My potassium had dropped so low my muscles were not working properly, i was paralysed as a result and with the heart being a muscle it was at risk of too becoming paralysed. I was in a third world country terrified I was about to die. I was too ill to fly home so had to be stabilised out in Ghana. Unlike in the UK (where you can’t discuss religion as a nurse) the staff there were coming in telling me I needed God and praying for me. I was an athiest and had I been able to move I'm sure I'd have walked out the hospital. After being ill for ten years hearing people say that God could save me just made me angry. I felt like screaming, I'd been ill for 10 years if God could save then why hadn’t he? Why had he made me ill in the first place? I'd come from England to a third world country. In England I’d rarely hear anyone talk about God, yet in Ghana they’d start preaching in the streets, stand up on buses and passionately preach from the bible. I'd not have said but so many times i thought that the fact they were so religious and had nothing was just proof that God wasn’t real as if God was real they’d have everything and it would be me in the third world country. I just didn't get how people who had so little could be so happy and hopeful. Despite me thinking they were all crazy for believing in a God they couldn’t see I was always polite, because I did love the Ghanain people, and after all it was their country not mine. I didn’t know how to recover, but I knew it wasn’t God.
Back in the UK the hospital said it was a miracle I’d survived. They didn’t mean this in a biblical sense, just in the sense medically it was near impossible.
To me faith or prayer wasn’t something I had ever thought could help me recover from mental illness. In fact I thought people who prayed were mentally ill, in my head it was no different from hearing voices or hallucinating. Now though I feel very different.
I’m not going to use Eating Disorder Awareness Week to push my faith onto others, as I know if I had read a post like that before becoming a Christian I would have rolled my eyes thinking ‘oh gosh another bible basher’. I’m not exactly sure when I came to find my faith, BUT I do know for me it was something that has helped me recover. So I do want to share how with MY recovery my faith has helped!
I’m not sure it was ever a light bulb moment, instead more like little steps along the way. My sister started attending church with a school friend first and I was angry. I was annoyed she was saying there was a God when I was going through a illness I wouldn’t wish on anyone.
I first started unknowingly listening to Christian music. My sister would play Philippa Hanna and I fell in love with her music, feeling I could relate to the lyrics. She sung about accepting yourself and I found it uplifting. My sister told me she was from Sheffield and she was singing live the following month so I decided to go. I thought Christian music consisted of hymns. So when we arrived to see her and she started to speak about what led her to write Christian music I was in shock that all this time it was Christian music that had been helping me overcome my body issues. She spoke about how she too struggled with depression and by the end of the evening I felt uplifted a girl who had been so troubled had become a confident woman. The atmosphere was different, I was in a room of women building each other up, not knocking each other down. Church became a safe place I didn’t feel judged, but I went because i liked the community, not because I believed in God. Church became a place of positivity and acceptance. I didn’t pray though, because if God was real, he’d make a world without illness. I just didn’t understand why bad things happened if there was a God. So although the church friends had become a part of my life, and helped me, i didn’t have the same hope or contment that they did. But I was finally able to be part of a community. They accepted me. Growing up with Anorexia it became my identity and it made me feel safe. I was scared to leave Anorexia as the it was what I knew. I would use websites and talk to others as I felt that only other sufferers would understand. Church changed that though. Unlike a lot of situations people didn’t seem to have a label placed on them based on their appearance. In society I often felt my place was amongst others with Anorexia. At school you’d see ‘rich kids’, ‘poor kids’, ‘geeks’, ‘chavs’. I was in the mentally ill group.
Recovery isn’t easy. Over the years I’ve met more girls who’ve died from their illness than I have recover. BUT now I am in recovery. I look back and for me the change came from finding God. Everyone needs hope and for me i got that from God. I know many who don’t have a faith and recover, but for me it was finding God which helped me find hope. Knowing that I am loved by God, that my weight and shape doesn’t define me. That I am not alone. I’ve got a church behind me supporting me too. A local church runs a programme to help girls affected by mental illness. I’ve had true love and care and i’m learning to love and care for myself too.
I could have spoken about a number of things this week to raise awareness. However, prior to finding God i felt that people who believed must have perfect lives and had no idea of the problems I was struggling with. I felt my problems were proof God didn’t exist. I wish I’d have known that Church was a place where i could be supported and that God could help me. I now know why the Ghanaians I met were so happy; because they knew God. They had hope. SO many times I’ve been told I could die, on numerous times my family have had to travel to my bedside as I wasn’t expected to make it through the night. Doctors couldn’t medically explain it, the only answer is that it’s a miracle. I didn’t think someone who’d grown up in mental health units could ever feel accepted in church, but I do! I’d always clung to the odd unhelpful comments, those which are of an extremist background. I’d dismiss those who offered care, but now i don't and that has truly helped me remain hopeful and in recovery.
I still have things which I can't understand and my never understand. Jus like in the medical world though, sometimes no one can explain why bad things happen. If a doctor couldn't;t explain your pain, yet could offer you a painkiller to stop it, would you say no and continue to live in pain? Because that's the choiceI had. I still don't know why bad things happen in the world, yet I know the solution is GOD!
[Bible Verse] For you have been called to live in freedom.
Friday 2 March 2018
This beautiful video by Body Gossip has been around for a while but I still love it and though during EDAW would be a good time to share it. It's a poetic film staring different famous faces and is about Eating Disorders and fighting back to claim a life recovered.
To find out more about Body Gossip's work click here.