Three years ago today, I was discharged from hospital after a 10 month stay. I was excited, lonely, nervous, proud, but mostly scared. I was scared for the next few weeks, let alone for the next couple of years.The first year home mostly consisted of anxiety. I was anxious about everything. Food, body image, public transport, friends, seeing distant family- I actually can’t think of one thing that didn’t make me anxious.

The second year was different. I started to volunteer in a charity shop and this not only gave my days structure, it gave me customer service skills, social skills, and confidence. It was was also something to put on my CV so when I was ready to apply for jobs, I had some experience. After volunteering there for a few months, I added another voluntary job in and I was suddenly busy all the time. I also learnt to drive during this year which gave me a lot more freedom and I was excited at the idea of getting a car (which would open up more job opportunities). 

That bring me to the last year, and really the most crucial year in my recovery. It started off with me getting my first part time job as well as doing my two voluntary jobs. I eventually stopped both of those due to the charity shop closing and the other position didn’t fit in with my part time job anymore. So I went through the summer working part time, seeing friends and family and gained so much confidence and independence. That brings me to December- I got a part time job through my sister and I absolutely love it. It has turned out to be more full time than part time (my contracted hours are still only part time which is great because I always have the option to reduce my overtime if I’m struggling and/or need a break), I’ve made friends with pretty much everyone I work with, already have spoken about the prospect of progressing higher in the company (my colleagues have all expressed they’d like me to do this as well, as they all like me which is lovely), I have a regular steady income and I’m getting my first car in two weeks. Life’s very different to even a year ago, let alone three. 

I always find that I ever truly recognise how different my life is now until I write posts like these. I use this blog as a place to document my progress over time. There’s nothing more satisfying than looking back at a post I wrote six months or two years ago and seeing the difference compared to the posts I am currently writing. No one in my ‘real’ life knows about this blog, it is purely for myself and anyone who may stumble upon it. 

School Days and Old Friendships

*TW* suicide attempt, overdose, etc. mentioned briefly. Please do not read if these kind of topics affect you negatively. X

Growing up, I didn’t really struggle with making friends. My primary school was very small, one class per year and (most schools around here had 3+ classes per year) and that meant everybody knew everybody. We spent five days a week together for majority of the year from aged 4 through until 11. All of our parents knew each other and I really liked the little community we had, it felt very safe and very small town-ish, despite the fact that we live in a very busy area just outside of London. So primary school was ok, I wasn’t the most popular girl in the class but I was perfectly ok with my handful of close friends and I didn’t see us losing contact when we all went off to different high schools. But we did. Or I should say I did, I know a lot of the others kept in touch. Most of my class mates went to the high school in the area that is seen as the popular one. A few girls went to different girl’s schools, and four or five of us went to the school that is frowned upon around here. I remember a friends family member asking me where I was going and once I told her, she turned her nose up at me and made a comment about how it was full of pikey’s there. I didn’t like her anyway. 

There was never any doubt about which high school I would go to, my sister and brother were already there and it was the closest school to us. I didn’t even put down a second choice on my forms. As I’ve already said, it’s not the best (or wasn’t when I was there, it’s improved a lot over the years) and going from such a small school to a large high school was difficult. I did make friends, there were about 10 of us who were extremely close throughout year 7 and 8, particularly. My best friend at that point was C. We were in all the same classes and did everything together, in and out of school. Her family became like my own and vice versa. It wasn’t long before we became good friends with another girl, A.S, and we formed a little trio. We had our big group of friends but they all also had closer friends within the group and it seemed to work well.

I could leave the story here and only include my good years but that wouldn’t be a fair portrayal. Up until this point everything was normal. I went on school trips, I spent most of my time out with friends or at someone’s house. I was never as boy crazy as the rest of the group but that didn’t exclude me from boy talk. As you know if you’ve read my other posts, I have Myalgic Encephalomyelitis (also known as ME, CFS or chronic fatigue syndrome) and this began in 2010 when I was 13 or 14 (for a more detailed explanation read this post).

When my illness developed, I was at a key point in my teenage years. At that age you are just starting to find who you really are, what you want to do, and all those other important things but for me, everything suddenly paused. I became too ill to attend school full time and never really explained to my friends what was wrong and they didn’t ask much. Maybe they didn’t want to pry, maybe they didn’t care, I’ll never know but I was cut off from that part of my life very quickly. In the beginning I kept in contact with C and A.S via text and Facebook but that was difficult, they were going to parties and getting boyfriends and I was at home in bed or at the hospital seeing my paediatrician. Then came my first overdose. There’s a more detailed story behind that which I will tell but that will be a post in itself. I came home from the hospital and decided to be honest with them. I told them both that I had overdosed and I don’t remember C’s response (it was probably something typical to that age ‘aww, if you need a chat I’m here babe’) but I do remember A.S’s. She said “why did you try to kill yourself?” and I told her that I didn’t, I just needed everything to stop for a while. I don’t think she understood and I don’t blame her (or C) for not knowing what to say, we were 14 and I didn’t even know what was going on and I was the one that had done it.

From age 14 to 16 I did my school work from home. My school were flexible with me and let me reduce my GCSE’s to 4. I only had to sit a few exams, the rest was coursework and essays which were even reduced for me. Throughout those years I probably went into school 8-12 times and those times were only for 1-2 hour periods to attend one lesson or have a one-to-one session with a teacher. On those few occasions I did see my friends and they would try and catch me up to speed but it was useless. By that point we were living opposite lives and I couldn’t relate to them anymore, I appreciated it but they had never made an effort to visit or keep in contact with me so I made the decision as a 16 year old that I wouldn’t attend my prom, leavers assembly, or collect my results to avoid seeing people.

Results day came around in 2012 and my mum collected mine for me. I had passed the 4 subjects I had taken with C grades across the board. I was relieved I wouldn’t have to do any resists and I had the minimum required for when I eventually was ready to attend college. The rest of 2012 and most of 2013 are a blur, most of the time was spent in bed. June 2013 was when everything became too much and I attempted to take my own life. I was found and spent 11 days in intensive care but I made it. Had I been left any longer, I don’t think I would be here right now. The next 10 months were spent in psychiatric units and throughout that time, only three old friends contacted me. Everyone knew what had happened because I didn’t make any effort to hide it and my family didn’t lie about where I was. One of those girls was C and the other two were L and M, I hadn’t spoken to either of them in years. L privately messaged me through twitter and said that although we hadn’t spoken in years she hoped I was ok. It felt very genuine and I really appreciated it. M also messaged me through twitter but it felt like she was digging for information (“why was I in hospital?” “what was wrong with me?” “how long would I be there?”). I ignored her questions, told her I was ill and getting better and she didn’t message again after a final “good, I hope you get better”. C was different. As she had been my closest friend, I had spoken about her in therapy. My therapist thought that it would aid my recovery to write to her and let her know I was ok. I looked at it as an opportunity to either close off that friendship or restart it, so I agreed. I wrote telling her that I was in hospital receiving treatment but I was ok and it had been suggested that I write to her as she had been my best friend for years. My mum posted it through her door and a few days later I got a message through twitter saying (this is copied and pasted from her message):

“Hello Molly!!! I have just read your letter! I don’t know what to say I started to cry!!!! I just wish you could be better babe!! I know you might not see this but I want to write back to your letter but I go away next week and got a lot to do but I will 100000% see you when I’m back”

If our roles were reversed and she had written to me, I would have immediately replied whether I was busy or not. I can’t hold a grudge though, we are both obviously very different people compared to how we were when we were 14 and she’s moved on. When I sent that letter, I hadn’t managed to move on but I have now and see things with a different perspective.

And that brings me to now. I’m finally restarting education having applied for an online course yesterday. My plan is to be back in ‘proper’ college for next September if everything goes to plan. I’ll be 20 by then but it’ll be worth it. I’m aware that this post quickly became about my friendship with C when I had intended to write purely about the schools that I went to and how I coped throughout those years. She was a big part of that time and I guess that’s why a lot of this post has been about her. I hope this is somewhat readable, its 1.46am and I’ve been writing since midnight. I apologize for not posting because I really wanted to be update regularly this year. Come September when the craziness of summer has passed, I promise there will be more ramblings.  I have a list of posts I want to make, it’s just finding the time and energy to write them.

(I also wanted to point out that I refer to other people by letters (C, A, L, etc.) because if anyone I know where to come across this blog, I wouldn’t want it to feel like I’m shaming anyone because that’s not my intention! I know first names are generic anyway and I’m not posting surnames but I feel better using initials!)

X

One year on

Today is the one year anniversary of me being at home. In some ways it feels like I’ve been home a lot longer but in others, it feels like yesterday I was pacing the ward corridors sharing headphones and belting out depressing music with another patient who has since become one of my best friends.
During those ten months I accumulated a lot stuff. Section papers, ward round reports, a shoe box full of letters from family and friends, care plans, multiple diaries full of my distorted rambles, therapy notes, a folder full of art therapy work, and various other crafts/papers from different groups. After my discharge I put it all into a big box and shoved it under my hanging rail, out of sight out of mind. This week, I decided that I felt ‘ok’ enough to have a look through it. I felt like it could go in one of two directions- I could be majorly triggered and have a meltdown or I could be proud of myself, proud of how far I’ve come. Luckily, it went the second way. I don’t think I’ve ever given myself time to sit and think about how far I have come. Back then, I was attempting suicide daily, had to have a staff member within arms reach at all times (including on the toilet, in the shower, and whilst I was asleep), I was sectioned, and at my lowest point, I was refusing visits and not talking to any friends or family.
This morning I woke up (in my own bed- I still appreciate that) to some cards and a presents from my family. I’m so lucky to have them. Today could easily have gone unacknowledged but my family, my mum particularly, always makes sure that on days like today I feel appreciated and proud of myself. Because I know now that I deserve to feel this way and not how I did back then. I’m going to end this post with a snippet from my mums letter. This is something I’m always going to treasure.
“It’s a whole year now since you came home, and I feel as happy today as I did then. You have tried so hard and achieved so much this past year and I hope you know how proud of you I am and how proud you should be of yourself.
With your strength of character there is nothing you can’t do- remember that. And nothing you can’t achieve- when you are ready!
In the meantime, I am always here, to help- if I can- of just to listen- if I can’t, and if nothing else just to be your Mum. Try and enjoy every step of this journey you are on and, above all, always remember how loved and cherished you are.”
I hope wherever you are and whatever you are going through that you have someone in your life to help make you feel loved as I do today. Bye for now. X

2014

2013/14 were without a doubt the hardest, most painful years of my life but with 2015 only a few hours away, I wanted to focus on some of the positive moments from this year! So here we have..

Things I’ve achieved in 2014:

-I accepted that I’m ill and decided to give recovery a chance, which led to..

-..getting discharged from inpatient after 10 months!

-turned 18

-continued with medication

-joined the gym

-was a bridesmaid at my cousin’s wedding

-and wore my dress all day

-stayed at a hotel for the first time!

-stayed out of hospital (minus one blip)

-travelling on train/tube at first with company, then alone!

-eating, within reason, when my body needs to

-wasn’t as reckless with money

-realised that I can’t let other people’s negative emotions/opinions control mine

-got Taylor Swift tour tickets for June 2015(!!!)

-went to my CFS clinic appointment alone for the first time

-met up, multiple times, with friends

-learnt to say ‘no’

-allowed my mum to continue to have complete control over my medication

-got the tube home after an anxiety attack

-cut ties with people found triggering/unhelpful

-met the giraffe I adopted!

-had multiple emotional conversations with different family members, which were difficult but beneficial

-kept up with my regular appointments

-started seeing a recovery, this was a big deal because it meant adding someone new to my care team after such a long time

-made it through Christmas without engaging in negative behaviours

-I’ve finally put the phrase ‘choose your battles’ into motion

-accepted the loss of old friendships

-saw distant family members for the first time with them actually knowing about my illness

This was a difficult list to make because it’s extremely difficult for me (and most people!) to acknowledge my own accomplishments but I think it’s something everyone should start to do more of! So those are the things I feel I have achieved this year. I’m going into 2015 with a completely different outlook on life and hopefully this year will top all of my previous years! I’m most likely going to do a post in January where I set myself some goals for 2015.

With all that said, I hope, whatever you are doing, you bring the new year in with a smile. See you in 2015!

My experience with CFS

I developed CFS when I was 13 years old after having glandular fever. Before getting a diagnosis my symptoms were put down to multiple different things-my period, anemia, celiac disease, dairy intolerance.. it was stress that I didn’t need on top of my exhaustion. When my GP finally diagnosed me with CFS, she referred me to a pediatrician. There wasn’t much they could do because chronic fatigue doesn’t have a ‘cure’. I was given sleeping medication to try and regulate my sleeping pattern, biweekly vitamin injections and referred to a OT. I started using graded activity which means you increase your activity gradually so your body has time to adjust. I found it really difficult because when I had a ‘good’ day and felt like I could do slightly more, I would. But then I’d suffer the next few days and be even more exhausted than usual because I’d done too much. It was a vicious circle. CFS was made worse for me by the fact that I was also unwell mentally. My first suicide attempt made things a lot worse. At that point I was still attending school part time but my attendance dropped afterwards until I wasn’t going at all. I lost contact with all my friends, because who wants to be friends with the crazy girl who can’t get out of bed? My OT then went on maternity leave and although I was happy for her, I was sad because this was yet another change. At this point I was doing coursework from home (my school had allowed me to only take maths and English language GCSE and BTEC health and social care) and my new OT was helping with coping techniques. I managed to get through my exams and came out with 4 C grade GCSE’s. I was pleased that school was over but at the same time, I was scared. Where was my life going? I had no friends and I wasn’t healthy enough to go to college or sixth form. My mental health was deteriorating quickly and I started to isolate myself more than ever. I turned 16 that June and because I was too old to carry on seeing my pediatrician, I was referred to a CFS specialist for adults. As with my previous consultant, there wasn’t much he could do other than advice me to keep taking melatonin. The months to come are a blur. I spent almost everyday in bed, too exhausted to get up and too tired to care. I stopped eating because that was the only aspect of my life that I could control. I hated myself and everything about my life. What was the point in my being alive when I wasn’t living? In June 2013, I became an inpatient and during my 10 months in hospital my CFS appeared to have gotten better. Now as an 18 year old, unfortunately over last month or so, I’m aware that I’ve most likely had a relapse. Things aren’t as bad as they used to be, because this time I have people to support me and people I can be honest with but I’m struggling more and more with everyday things. I’ve got an appointment next month with my consultant which will hopefully help the situation. I’m don’t know if I’ll ever ‘recover’ from chronic fatigue. I knew that it was very likely that I’d have another relapse but in the back of my mind there was always that bit of hope that maybe I could ‘beat it’. Hopefully one day I can say that I did.