Life Beyond…

My internet was down for a little over two weeks, and, aside from that have been incredibly busy so my apologies for the lack of posts!

I have spent most of my time volunteering in animal sanctuaries, veterinary practises, farm and wildlife hospitals and so on. I need this experience in order to apply to university which I shall be doing this year (a year late due to my eating disorder), and it has been a lifelong ambition. I remember when my psychiatrist said to me, bluntly: “Well, I certainly don’t know of any dead vets working.” It was a joke, but a very serious one: my eating disorder stripped me of any meaningful future. So, now, after initially being forced to gain weight to my target, I am choosing to try to stay there.

I remember the summer, two years back. I had just entered outpatient treatment and was not gaining so much as a few grammes (I was in fact shedding it very fast). I was told by psychiatrists to get a car lift to school — a 15 minute walk was too much for my heart — but I decided to go and work with animals on a farm where the physical task was quite demanding, against medical advise. What really amazed me is that I actually ate extra on top of my meal plan, even when the anorexia voice was at its strongest. I managed it, because I was motivated and because I knew I could not realise my dreams of a career in veterinary medicine with the degree of eating disorder that I had. I had lost a lot of things — weight, friends, almost a place to live, everyone’s trust — but I knew that is I lost my future, I would have nothing left to live for.

The future is a scary place for me. It is mysterious, unknown and the path as yet untrodden by myself. A future without an eating disorder, I realise, is not one of only flowers, it is one of real life which comes with a lot of connotations, but all I know is that it has the potential to be fulfilling; it is a life without so many barriers, outside of the prison that the Eating Disorder creates.

Telling friends about my Eating Disorder

Due to my anorexia nervosa I have lost a number of friends. Some directly due to my illness, some perhaps because, as the illness became all too consuming, I spent less time contacting them coupled with the fact that one of my friends moved school and went on to lead a seperate life to me.

I had three friends at school, and one who had just moved. Telling people about my eating disorder has sometimes worked, but sometimes has miserably failed.

One of my friends kept hinting to me that I had anorexia: she talked about famine and kept offering me food or asking why I was failing to eat at lunch or constantly at the doctors. I decided to write to her as I couldn’t tell her straight to her face. In her response, she replied:

The main reason was that whenever I talk to you I always got worried because of all these days you have been having off. And I got the impression that you didn’t want to tell me, which was fine initially but the more appointments you started having the more worried I got and didn’t know what to talk about with you which wasn’t related to your doctor’s appointments. So I’m extremely sorry.

[…]

I’m here for you. Whenever you need help with anything, just ask. I will not mind, infact I’ll be glad to be help in any way.

[…]

Since when do you have this problem?

I didn’t particularly like the questioning: does it really matter how long? Needless to say, despite her positive response, she never really understood and soon decided to leave me. After prolonged absence from school, she avoided meeting with me to go out to the cinema. She was jealous of the exam support I received and the grades I was achieving despite hardly ever being in class. She spread messages about me in the common room, and refused to even work as part of a group with me in Biology (and left me on my own; it was humiliating but luckily some other girls helped me out and let me join their team). She failed to pass on important messages to me when I asked to look at work I had missed. You would think such exclusion and bulling would stop in Sixth Form, with people being 17-18 years old, but things have changed little since I joined that school.

Another friend left me as her mum thought eating disorder are contagious and she might contract it from me. The third friend just…left.
However, yesterday I talked to a very close friend. She used to tell me I need to gain weight, but didn’t ask and respected me that I would tell her if and when I felt was right. She told me today and my ex-friend asked her (“hey, Kushika’s lost a lot of weight.” “I know.” my friend replied. “why?” — basically my ex-friend wanted a bit of gossip instead of asking me directly). My close friend asked why I was extending my studied by a year. So I told her I had anorexia, gave an idea of what symptoms I lived with, and told her I was doing okay now. I explained to her that it was nothing to do with the media, and dispelled a few myths. She understood to a certain extent as her ex-boyfriend has anorexia for a number of years and is underweight to this day.

So, in conclusion, I’ve had mixed responses. I don’t expect people to understand, and don’t need friends to understand the illness, but I expect people not to judge me or cut me off because of my illness. The friends I have lost are not the people who I wanted in my life. When explaining that I was ill, I only do so if I am comfortable, and if I don’t feel its necessary, I see no reason why someone, even a friend, needs to know of my health unless it will be beneficial to me. I always try to dispel myths if I do, and explain in what way I want people to support me seeing as very few people know what they can do to help (it could be as not mentioning diets excessively or commenting on appearance or just being there).

Dear Long Lost Friend

I know you may never hear these words spoken to you, but I would wish you could listen to me and what I have to say.

I remember the day I met you, and will always remember your bright, auburn (as you liked it described) hair. I moved into your maths class, and sat next to you, because, like me, you had no friends in the class. We shared a lot of similarities.

As the years grew we spend many days in each other’s company. You taught me a few chords on the piano, and the joys of music, as I shared a few interesting facts about other artists from the painting world. We spent many birthday’s together and gleefully went through supporting each other through the years of GCSEs in years 10 and 11.

I listened to you when you rang for a rant, and supported you when you cried and when our other “friends” did nothing but asked me to see you. You always said I’m here for you whenever you need me. You were the only one who knew that something was wrong without asking. But little could I tell you of my struggles with coping healthily with life and of my self destructive side (which involved cutting myself, and later turned into starvation). Why? Because of fear, shame, and a feeling that I was already too much of a burden on the world.

You moved school to start Sixth Form elsewhere, and I deeply missed your absence, but you heard of the rumours of my noticeable weight loss nonetheless. I remember writing to you on Facebook, in March 2009, after I had entered treatment (which was, precisely, on the 13th March 2009, on an emergency basis). I remember explaining to you (and to another friend or so) that I had developed anorexia, and that this was not a vanity issue, but a deep-seated psychological issue. I thought you might understand: you have a great capacity to listen, your mum is a GP and you mentioned your anorexic cousin. What aspects of the illness you did and did not understand I shall never know.

I remember you asking me to come round to yours for dinner. I was eating a normal sized meal on my meal plan by this time, but the prospect of me eating seemed to frightened you. This was also evident when, previously, you questioned whether I’d be okay to enter the local groceries at Sainsbury’s with you (just because I look emaciated did not mean I would absolutely freak out on your in the shop, the worst case scenario is surely that I would simply leave). Or when you asked for permission to eat in front of me. Or when you questioned me, in Spanish, in the waiting room of your mum’s surgery, whether or not I was bulimic too. You did show great concern, and I am sure you were. But in future, take a word of my advise, and ask is what can I do to help? what am I doing that isn’t helping? instead to treating on egg-shells.

After a while our friendship got weaker and weaker. My life began to crumble as my other “friends” refused to visit me in the school library (I was too ill to walk to see them), or when they purposely told me there was no work to copy up before a test which was due, or when they said, point-blanc told me that I cannot work with them in biology. I did not care if they treated me as such, for I shall most likely not cross their path again.

I remember the day I was hospitalised for anorexia. I wanted to tell you how scared I was that I might die, for the very first time, but our ties were too weak and hence my mouth was sealed.

You gave me a card for my 18th birthday, and said you had the present with you. We should meet up. You live 15 minutes away from me, why did you not visit me? Why did you not drop it off on my doorstep if I was out? I would have, and have done so in the past. We never did meet, as much as the hope, painfully dwindling, still remains to this very day.

And then I had the ordeal with my shoulder, a chronic problem for me. The excruciating pain tore through me, only to be numbed by hallucinogenic drugs. I was a bag full of fear. My status on Facebook was updated frequently– did you read it? I wanted you to be there for my during my operation, my first ever surgery. But you couldn’t, for whatever reason. Maybe you had moved on with you life since then. Maybe you had forgotten about me. Maybe you did care but didn’t realise I was having surgery. Maybe things were going on in your life which made it difficult to stay in touch with me. Maybe.

Perhaps I shut the door on our relationship. No, it wasn’t me, it was anorexia. It was the anorexia which took away my time that would have been spent keeping in contact with you. But the thing is, I wish you could have perhaps tried to open the door, for it was, and still remains, unlocked. Or maybe I was just too blind to see your attempts. I shall never know. But I wish you would have tried once more, just one more time.

I was told my chances of living were worse then certain types of cancer. Anorexia is a lucrative illness, shrouded in myths and mysteries, not least because it is the few obvious mental illnesses of the mind which bear such obvious outward signs and is plastered in the media. We live in a society where we fear the sick; few people mention the word “anorexia”, just as some refuse to call cancer by it’s name too (“the big C”). Why do the names of serious illnesses bear so much fear? Is it fear? I have heard of people with terminal cancer, who, once so popular, received few visitors whilst they wait to die in hospital. I was too sick to engage with the world, but the world did not try to talk to me . And worse, some people tried to hurt me and turn against me. Indeed, some parents thought I was a contagion and do not even say “hello” to me to this very day. I wonder if it is the fact that we fear seeing the illness in ourselves. Teachers have told me they did not expect me to become ill. I think, as a whole, we worry that, in seeing the reflection of ourselves in the eyes of someone who is so ill, we are confronted by the fact that we are all so fallible and at mercy of fate; we are just human.

And so, I wish to tell you that I will remember the good times we spent together and cherish the positive memories. But I will also mention that is is time for me to let go and move on to new relationships and onto a new life. I do bear some resentment, in all honestly towards you. I hope you see that from my point of view; when I needed someone, there was no one. I feel all you needed to do was to open the door handle just a tiny bit more. I know you did worry but simply did not know how to voice your concern. At least that is what I would like to believe. I wish I could say this to you in person. I wish I could tell you my journey and share with you what I have learned. It is time for me to let go and stop dreaming of us becoming close friends again. We reached that fork in the road a long time ago and I need to accept that.

I hope someday you will read this, that I will be able to give this to you somehow. I’m not strong enough to do that just yet, and so, this letter shall lie dormant until that time will come, if it ever does.

Best wishes in your journey in life,

D

19th July 2010.

Trusting yourself

The very title of Melissa’s post, Trusting the process, remind me of the words my psychiatrist used to say

I understand that recovery is a leap of faith. Trust us, and more importantly, trust yourself.

What she says makes fundamental sense, and yet seems to be intrinsically difficult for me to achieve to this very day. It is a fear of what might be in the unknown.

Getting back to exercise

I’m at a weight were I can exercise again after my exercise was previously restricted. Fantastic!

But with the decision to start exercising comes responsibility for my actions as I used to over-exercise, waking up before 6am to fuel my compulsion to burn calories, and also a variety of choices to make.

Physical implications of Anorexia have prevented me doing my favourite sport: swimming

I had a physiotherapy appointment not too long ago and have got the all clear to start to exercise again.

To give you a bit of background information I have suffered from an unstable shoulder and recurrent dislocations, the first being caused 2 years ago during a skiing accident. Since then, I began to diet, developed anorexia and become malnourished which compounded the problem, and I started to dislocate it all the more frequently. This has led to a restriction to the type of exercises I could do, and impacted my life greatly. It was a great source of almost unbearable pain which got progressively worse, and which had a huge impact on my life.

To count to date I have dislocated numerous times;

  1. skiing accident mentioned earlier
  2. when moving a box (needed to go to A&E)
  3. when engaging in compulsive exercise by going swimming (A&E trip again)
  4. when tripping down the stairs at a train station (relocated itself)
  5. when falling into water from an inflatable ring pulled behind a speedboat (A&E — an air ambulance even got called out which made me feel special [for the wrong reasons])
  6. when I fell onto my shoulder when my bed collapsed (A&E)

Most of those dislocations are a blur of memories that I barely recall — the sound of paramedics, the tingly feeling in my libs whilst being on laughing gas, the confusion and delirium when waking up from a bolus of IV ketamine, the pain and the comfort of friends and family, the sterile smell of a hospital setting, the morphine-induced hallucinations — and finally, the last incident when I had to be anaesthetised, was the final time I dislocated my shoulder.

Since then, I have had a shoulder operation (anterior shoulder stabilisation) to fix the tear in my ligaments (as I now have three pins in my shoulder). And so, as the rehabilitation carries on, slowly but surely, my body is recovering from the physical impact of my eating disorder.

Would things be different if I hadn’t starved my muscles away? Could I have prevented it? I don’t know. Perhaps the physio would have worked better in the earlier stages if my muscles were stronger. Perhaps I just had a physical weakness in my shoulder and my illness simply exacerbated it.

But now, I have the choice, as my physio says, to get back to swimming. This brings on challenges in the following ways:

  1. How do I ensure I exercise gently and not over-exercise once again?
  2. Where is the line drawn between “excessive” and “normal”

Exercising for the right reasons

I need to ask myself the following questions with regards to exercising again:

  1. Why do I want to exercise again? Do I secretly hope to lose weight? Or it is because I enjoy the activity?
  2. Am I capable of increasing my food intake and responding to hunger signals in order to compensate for the calories burned?
  3. If I do lose weight for not compensating enough, am I willing to gain it back?
  4. Am I prepared for the dial on the scale to increase if I turn more of my body mass into muscle?

I have yet to answer these; some of the questions can only be answered after I try it.

Exercising is a challenge for me: it brings back memories of  weight loss, of the obsession of doing x lengths in the pool, of my eating disorder.

I need to be responsible for my actions, and deal with any consequences involved. I need to exercise for the right reasons only, and not exercise because it fuels my anorexia.

Exercising alone vs exercising with others

I was recommended to join a team sport by my treatment at CAMHS. I was advised solitary activities would be dangerous territory. But alas, my shoulder prevents me from doing sports like netball, and so do financial constraints. I cannot find many who are willing to exercise with me either.

Therefore, in a way, by doing something like swimming I feel I need to be all the more cautious as it was, technically, against the advise of my old treatment team. They may have made a fair point: it is hard to judge what “excessive” is when you have suffered from an ED, and other “normal” individuals can add a sense of perspective.

I shall let you know how my journey to incorporate exercise into my routine works out. I might not be ready yet, but we shall see how I will turn out to deal with this.

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