My journey with anorexia

Eating disorder recovery symbol

* TW: Eating disorders and self harm*

Back when I was a teenager I really struggled with a lot of things. Home was difficult due to my mum’s BPD. School wasn’t great either. I was bullied in both primary and secondary school. I never felt like I fitted in anywhere, especially with my peers. I’d try to change myself to fit in but I felt awkward. I preferred the company of adults like the dinner ladies on duty in the playground or teachers. In primary school I’d much rather spend my break and lunch periods in the classroom tidying the classroom and doing jobs for my teacher. 

The move to secondary school I found really unsettling. This quickly brought on feelings of anxiety and depression; I was already deliberately hurting myself in different ways. I struggled to cope with the change of teachers and classrooms. I also found the playground dynamics difficult too. I’d gone from enjoying playing double Dutch skipping in the playground at primary school to just everyone using the playground to stand around in their cliques in. I struggled even more to try and fit in and to change myself as I moved around groups.

More often than not though I was bullied than being friends with people; if it wasn’t one person or group of people bullying me physically and/or verbally it would be another person or group. 

I took to spending my breaks and lunch periods in either the library or my favourite teacher’s classroom. 

I’d always avoided the canteen from day one as I found it too small for purpose and it was noisy and overwhelming. Not eating meant I could spend my whole lunch period in the library of my music teacher’s classroom. 

My only refuge at secondary school from feeling overwhelmed and anxious was to spend time in SEN unit doing worksheets so I didn’t have to be in the main school building. It saved me the stress and panic and worry of changing classrooms and teachers as well as being away from all the bullies.

Very soon my eating disorder took hold. It quickly went from skipping lunch at school to not wanting to eat at home too. I very soon became a vegetarian as it was something I could cut out of my diet. (I’m still a vegetarian now and always will be but I do it for the animals now.) 

Eating disorders are very manipulative. I remember my dad saying he’ll take me to the GP and I bargained with him that if I eat my packed lunch we won’t go. I made it look like I had so voilà no GP. However I annually saw my paediatrician for my spinal curvature and I got on well with him. I remember telling him how dark I felt and we spoke about my eating. My paediatrician diagnosed clinical depression and anorexia.

Very quickly treatment changed. I had to start seeing a dietitian who had zero clue about eating disorders and she was expecting me to do the impossible. I also had to see my paediatrician twice a week. That just lead to me spiralling even deeper. Eventually in October time I self-harmed by taking a small overdose. This fast tracked me to CAMHS: Child and Adolescent Mental Health Services. I started psychotherapy sessions with the CAMHS therapist that assessed me in hospital; she came to play a key role in my journey. Unfortunately I was in too deep with my eating disorder and depression and a couple of months later I was admitted to my first inpatient unit.

Going into hospital almost saved me in a weird way. I hated inpatient treatment but that first admission got me away from everything that was bothering me school and home.

I spent the next several years in various inpatient units. I restored my weight each time but it didn’t work on me emotionally. I think the problem was the lack of talking therapies. I’d get discharged but I’d quickly relapse and be admitted to another unit. I think what worked for me was in my last unit there was a social worker in that unit and I talked to her about home and basically my mum left and that really helped me. I was able to stay at home and what helped me to recover was my CAMHS therapist. I was in therapy with her for several years and slowly I opened up to her. I honestly think I owe my life to her and I will never forget her.

I relapsed with my anorexia again last year. I think the trigger this time was not feeling in control of my health and care maybe? I actually asked for help this time. I was assessed and then offered outpatient therapy. 

There were times earlier when I struggled with outpatient therapy and did want to consider inpatient treatment again but equally I really wanted to try and stay in my own home especially as I now have my own home. I’m still in outpatient therapy. It’s tough going and it’s often a real struggle but my therapist (who I get on well with thankfully), with has made a lot of suggestions to help me at home.

The therapy I’m doing at the moment is CBT-ED so it’s CBT specifically designed for eating disorders. I find my therapist challenges my thinking a lot or will get me explain something I say. I’ve also been shown a lot of resources some are general information to learn about various aspects of eating disorders then some resources my therapist gave me were aimed at specific things I struggle with as part of my eating disorder. I’ve found the education really helpful partly because I like to know and learn things but also it helps me understand my eating disorder. I really struggle with my body image but that topic isn’t worked upon until my weight is restored, something I’m making slow progress with and struggling with as well. 

Recovery takes time but equally recovery is possible.

Beat

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13 years later

February this year 13 years on way back from 2013 marks the month my life changed forever. I’d had the flu from which I never seemed to have recovered from. 

On top of my ongoing flu I was experiencing that February in 2013 I also had my first tonic-clonic seizure. Before February at first I was having like daydreaming moments but my head would feel really fuzzy and I’d be really confused afterwards. I now know these to be absence seizures. But once I’d had my first tonic-clonic seizure I was having different types of seizures multiple times a day.

Living undiagnosed

I plan to write a specific blogpost on this topic however living with undiagnosed symptoms was so difficult in so many different ways. I’d get so frustrated with myself and I’d blame myself over my symptoms and not understanding what was happening to me or why. It was also scary and bewildering when new symptoms developed or when my health would worsen. I didn’t know what to do for the best for myself. Like should I try and exercise more but then I was struggling with my mobility and was using a walking stick the right thing to do? Did I need more coffee, more sleep, less sleep, supplements if so which ones?!

I also developed medical trauma from having my seizures but also from the things I heard and saw in hospital especially when in A&E resus but also from experiencing medical gaslighting. 

Doctors and nurses didn’t always treat me so well, physically and verbally and mentally. When I had seizure clusters they wouldn’t give me the medication I needed on my care plan. Then when my EEG’s showed my seizures weren’t epileptic some doctors and nurses assumed I was faking my seizures for attention, or drug seeking or I was mentally unwell among other things.  

Some of my thoughts when I became unwell

Diagnosis time

Getting a diagnosis finally in 2017 was such a relief. I saw a specialist neurologist who specialised in FND and he diagnosed me Functional Neurological Disorder, this is a problem with the brain and spinal cord not sending messages around the body properly causing a plethora of symptoms. He also picked up in the appointment that alongside my FND I also had a condition called M.E. a Neuro-immune disorder that has a variety of symptoms.

Finally after years of living with undiagnosed symptoms, not being believed, being diagnosed repeatedly by my GP with Post Viral Fatigue Syndrome and just being told rest would make me better and countless times going to my GP asking for help and referrals and for tests all to come back normal I had names to my symptoms I could finally say I have FND and M.E. However but more importantly I knew I could finally stop blaming and beating myself up because I knew nothing was my fault.

My neurologist in his physical exam also picked up signs of Ehlers-Danlos so he referred me to an EDS specialist rheumatologist. After a genetic test to rule out vascular EDS I was diagnosed with Hypermobile EDS. With that new diagnosis came things like signs it was missed when I was a child as EDS is hereditary so I was born with it. I also had some of the same thoughts as when I was diagnosed with FND and M.E. The EDS diagnosis did make sense why I so easily subluxed and dislocated my joints; this was one thing I always wondered when I had my seizures.

Post-diagnosis 

It wasn’t easy however after diagnosis. I had to change my life a lot. I had to learn what triggered my seizures, and how to manage my symptoms better as well as how to pace myself. I also had to understand the conditions themselves. 

With my EDS diagnosis I had to do physio but with M.E. I experienced exercise intolerance and it would worsen my symptoms so I had to learn to do my physio but in a careful way that didn’t upset my M.E. too much. It was a fine balance at first.

Also with my EDS diagnosis came appointments for being fitted for splints and I had to learn when to wear them and when not to.

Becoming members of charities to do with my various illnesses really helped me in the early stages. This is something I’d recommend doing to anyone newly diagnosed. You can access a lot of information sheets and other resources as well as helplines and communities with others with your illness. I also got a staying safe with seizures booklet from Epilepsy Action which really helped.

There was already a lot I safely wasn’t able to do because of my seizures like use a kettle, cook, use the stairs, go out alone or drive and so much more.

Life now

Fast forward 13 years and my health has worsened over the years. I’ve had to fight a lot to get the care I need both from the NHS and also adult social care. 

My social care is now more-or-less sorted. I have two fabulous PAs, I just unfortunately have to use a care agency once a fortnight as there’s still a PA vacancy for then (the vacancy has been open 6 years but I remain hopeful). 

I’ve been lucky to get the equipment I need without really asking. I have a profiling bed with hybrid airflow mattress; I also have a bath lift and I’m waiting for a ramp for my back garden. My housing association have also been really good at adapting my bungalow for me too.

Some of the things I safely couldn’t do I’m now finding ways to be able to do those things. Sometimes it’s because I have the support of my PAs, or my seizures are better managed now I’m on medication or because I’m more attuned to my triggers but also because I have more confidence. Like 5 years ago I wouldn’t have thought it possible for me to be able to live alone. Also more recently like a year ago I wouldn’t have thought it possible for me to go out alone but now I have my Batec I share my live location with my PA who is at my home and I’ll take off for a short ride.

My GTM wheelchair and my Batec especially have been the best things I’ve ever bought. Since getting my Batec it does my mental health wonders. I’m just hating all this horrible weather at the moment as I’m missing going out so I’m looking forward to Spring and Summer.

I’ve also discovered more adaptations, aids and disability gadgets that help me and give me more independence.

I’m still learning how to get pacing and activity management done properly. It really isn’t my strength and it’s something I really want to get better at.

It is hard to see how my health has worsened over the years; I think because it’s been gradual I haven’t noticed it until I compare myself to how I am year upon year. Sometimes I have crashes to varying degrees with my M.E. and I’ll deteriorate, (personally my FND doesn’t fluctuate my symptoms just remain the same), and then I’ll have periods where my health will stabilise but not with much significant improvement and then something will trigger another crash. Read about M.E. crashes here. My EDS has also had a lot of complications. Also both with my M.E. and EDS I’ve developed secondary conditions which I have to manage.

Grief

I still sometimes grieve for my old life. When I used to be able to dance and do yoga so well. Or travel on a train or do volunteer work. Part of me thinks about Uni and graduating but another part of me wasn’t happy at uni and I wish I’d done another course at a different university. I think I only went for the course I did was because it was an undergraduate masters and it seemed daft to turn that offer down at the time. Part of me thinks about the career I really wanted and my plans for further study for my dream cream as a therapist with children. Now though I’d be interested in also working as a therapist with people with disabilities; help them get their head being newly diagnosed, grief for their old life or to deal with medical trauma and other such related things. 

Maybe one day I can return to some form of education but my focus at the moment is on just getting through each day and managing as best I can. It is difficult when you live in pain all the time and for me my health is so unpredictable and I have mini crashes and Post Exertion Malaise so easily. I need a lot of rest to manage my conditions.

Thoughts about disability 

I’m proud to say I’m disabled now but it did take me a while to accept that. My disabilities and health conditions don’t define who I am but they’ve shaped me into who I am today and I’m I different person for it. I’d say I have more resilience and I have more gratitude. My health has also over time made me realise who matters in life and who my true friends are too. I’m proud to be part of the disabled and wheelchair community.

Pen palling

Pen palling is something I really enjoy and I’ve been doing it for many years now. 

I got into it it when I came across a group on Facebook called #LettersOfLove set up by Jenny who I still occasionally contact. Jenny’s aim of the group was for members to write to each other with no obligation to write back. I really got involved in that group but in the end very few people were participating and just wanting to receive mail but not send so the group came to an end. I met one pen pal from that group who I still write to today so I’ve been writing to him for many years now!

I’m not sure where my pen palling went from there. For example how I found people to write to. 

Apart from my pen pal from the Facebook group I don’t think I write to anyone from the people I used to write to when I first started pen palling. Sometimes pen pals just fizzle out over time or you find you have no similar interests so I find there’s no point in writing or I’ve had the occasional negative pen pals. Also for myself having chronic illnesses/disabilities I’ve have pen pals with health problems too. I’ve got some current pen pals with health problems but it’s very positive and we rarely talk about our health and we’d rather write about other things, which I like. However in the past I’ve had pen pals who write about hardly anything other than their health problems and they also make made feel like my health problems were a paper cut compared to them. I found this really got me down as I do really struggle with my health. 

However it’s not all bad; I’ve had some lovely pen pals in the past.

Over the years I’ve written and gotten to know many different people. Some people I don’t write to anymore while other people I’ve been writing to for quite some time. Other people I used to write to regularly but now we just write every so often.

Currently I write to people in the UK as well as having pen pals in Sweden, Switzerland, Germany, New Zealand, the USA and Canada.

I’m also part of the Chronic Warrior Collective card swap. You can opt in or out each month depending on your circumstances and if you’re able to do it. If you opt in you write to one person and someone else will write back to you. I personally choose to write to people within the UK as stamp prices as so high for international mail. Some months the card swap has a theme that you can choose from for example in October there are three themes to choose from: Halloween spooky, Halloween non-spooky or Autumn themed which is the one I opt for. Last October I made my swap a pumpkin spice latte themed card. Don’t worry if you opt in then find you can’t write to your match as the CWC has a ‘Yikes Team’ that you can ask to write to your match on your behalf.

I’ve made a few friends through the card swap. I also help out with a related scheme called Cards 2 Warriors. People either nominate themselves or are nominated by someone else because they’re having a tough time with their health whether that be physical health or mental health. They can be ill themselves, or caregivers or medical professionals, or a mixture of these. There’s also a long-term list of people who need long term support. Both those on the short-term list and the long term list are sent out mail to give them some support and to remind them that they’re not alone and how awesome and strong they are.

Cards 2 Warriors means a lot to me as I not only volunteer by sending out mail. I love doing this, making personalised cards based on the person’s profile and just writing messages of support. But as well as sending mail with C2W I also receive mail as I’m on the long-term support list to receive mail. (I’m not quite sure how this came about?) So whenever I receive the mail from a volunteer it really means a lot to know that someone is thinking about me and is wanting to give me some support and remind me that I’m not alone with all the health challenges I have to deal with each day. When I receive mail I feel so much love and gratitude and it makes me wonder how the person I’ve sent mail to feels when they receive my mail?

I’ve made some friends and pen pals through the CWC and C2W who are based in the UK and various other countries.

Mail to Lia in New Zealand

When I write to a pen pal or friend I love making each letter, card or postcard I send to a pen pal unique. I’ve never sent two pieces of mail that look the same.

Sometimes I’m able to write a letter varying in length. Some of my pen pals write more than others. Sometimes I write a card and sometimes I might continue on paper if I have more to write about. Other times if I’m not able, for example if I haven’t been able to reply to a pen pal for some time I’ll send a postcard or sometimes I just want to send a postcard. I’ll write as much as I’m able to on the postcard. I like to have a stash of nice postcards either novelty ones I’ve bought like a rainbow shaped one or ones I’ve coloured in previously.

I’m really grateful that all of my pen pals are really understanding that it can take me a while sometimes to get round to replying to them and/or that my reply might not be as long as their letter to me or that all I’m able to manage this time is a postcard.

Out posting mail 

One of my favourite things to do is take a ride on my Batec to the local post box to post my pen pal mail.

I have some really good conversations with my pen pals and we write to each other about all sorts. Books, crafting, not buying writing and craft supplies and using up what we have instead, current affairs, their work, holidays, crafting, bullet journaling, TV shows, podcasts, doing up our homes and outdoor spaces, stamp prices, pet antics and so much more!

Recently I’ve been watching some pen pal videos on YouTube to get some inspiration on how I can make my letters more creative and as a bonus get more of my craft supplies used up. I’ve written a couple pen pal reply’s so far this year and I really enjoyed just using my imagination and the inspiration. My first creation was to Lia, see her mail above. I’ve also made an envelope flip book. I’d like to try and make an accordion card next. A lot of my inspiration comes from the ‘Craft with me’ videos on The Paper Letter Blog YouTube channel. I wanted to make something jazzier and just a letter in an envelope.

Some pen pals I write to more frequently than others. Some pen pals are still my friends, we just don’t write regularly whereas others we exchange letters back and forth. Due to stamp prices I am thinking of slowing down how quickly I send a letter. Thankfully my international pen pals I don’t write to regularly so that does save me some money. UK 2nd class stamps aren’t too bad to buy however an international stamp for one letter is £3.40 (and they’ll go up soon). Royal Mail used to put their prices up annually and only by a few pence; now they increase prices multiple times a year and quite significantly.

Back before I moved into my own home and I lived at my Dad’s I had a giant notice board next to my bed and I had a collection of novelty push pins for it. I was really sad that there wasn’t room in my bungalow for the notice board to go up anywhere.

Now in my bedroom I have fairy lights going across two walls with pegs on them as a new alternative. I love the variety of what my pen pals send me. I peg up cards and little extras people send me. It really brightens up my bedroom and gives me something positive to look at and to remind me of all the people in my life that are my friends that care and support me, especially because so often I have to spend a lot of time in bed because of my health and/or because I need to rest. The mail adds some personality to my bedroom and nearly everyone asks me about the cards when they see them. I love the fairy light element to them too, just having some soft lighting in my bedroom and I can dim them lights if I want to as well.

I’d recommend pen palling to anyone, especially if you’re experiencing loneliness or isolation. The CWC card swap is probably a good way to start. One of the options you can go for alongside writing domestically or internationally is going for the the option of the intention of maybe becoming pen pals with the person you’re writing to (just remember to put your address in with the card or on the envelope.