I was searching through my hard drive and came across some old writing – not journal entries so much as little random bits here and there. Times that I must have gotten on the computer and just let the thoughts flow.
This essay was written in 2009. I’d just been discharged from yet another hospital stay, and ended up in the same old spiral as I’d been falling into for years. The desperation and feeling of hopelessness in this saddens me now. During those years, I knew no way out. All I had to look forward to was more of the same, until my body gave up.
There was a better ending than I anticipated – I’m pretty sure that it was after this admission that I started begging the hospital team to help me gain more weight than I usually did – to the weight that I am at today. I had a couple more admissions to achieve that – but I did, and I have maintained – whether that is a fluke or not, it’s given me another chance at life that I really don’t think I deserved. But that I’m determined to make the most of.
Please be aware that this is a highly triggering piece of writing. It talks about hospital treatment, weight loss, food, eating disorder habits, death and hopelessness.
Monday, 13 July 2009
I was discharged from my 125th hospital admission on Friday afternoon, 10th July.
It was a nightmare in many ways and lifesaving in many others. For the first time I made a significant breakthrough in that for the first time in about a decade I was able to keep everything down (and eat everything too). I struggled most with the crap going on around me (petty molehills become mountains that lead to major arguments and tantrums in the stuffy HDU microcosm) and the crap going on in my head – either totally overwhelming, spending too much time sucked back into the things I never want to remember – or totally vacant.
When you’re too Ill to be sedated and so are restrained in bed in order to protect your PICC line and the TPN; when you’re too immune-compromised to be transferred to Wattlebrae as they now have swine flu there, but as soon as you fight off one infection you pick up yet another; when you’re traumatised already and undergoing way too many more invasive procedures; (the worst I think was one of seven PICC insertion attempts – in the ICU, without anaesthetic. They couldn’t get it past my shoulder and were yanking it out of the socket and kept cutting the site, then stitched it into place – I felt like a fish that’s been hooked. All that, and the x-ray showed it wasn’t viable anyway, didn’t reach my heart) – you lose yourself and become a body that seems to be everyone else’s piece of meat. Indeed, I often wondered if any of the Treatment Team ever considered what they do to my spirit? It’s shattered even more each time I’m there, ‘til I wonder if it wouldn’t be a kindness to actually let my body die. What point dragging this broken mess back to life again and again if there’s no quality of life and you’ve killed the person inside the body? My whole life has been spent being punished by others, punishing myself… and then I go to hospital where they punish me again for all of that.
I concede inferiority – all my life it seems I’ve been trying to convince people I’m not as bad as they think. But if I’m the only one who believes that (and I don’t, anyway) – then they’re right. There’s something very terribly wrong with me and always has been.
All my life I’ve been running from something. From danger. From violence. From myself. This time, I ran from Death. Or was it the fear of death? Whatever it was, it got me stuffing myself with my entire meal plan in a shock turn-around, and keeping every bit of it down. Of course, it was agony, in my mind and body. This body hasn’t had any solid food really stay in it for nearly a decade and it struggled, strained, raced, sweated. My mind thumped me in every way, every moment of the day. We’re trapped now. We have no choice. But I’ll get you, I’ll make you pay, when you are free from here. The eating cut the expected couple of months on TPN to just a couple of weeks. And I was home by the end of the week it was ceased.
No preparation. No maintenance. Just straight from two months in a bare hospital room to the chaotic big wide world.
I hoped I’d be able to keep things going. I want to LIVE. I know that if I can’t nail it now, I will die. I’m desperate to survive.
It’s been a mess. It’s been like ‘imploding’ – fragile, newly-bolstered hope caving in unsupported by any confidence within. Social phobia returning as strong as ever – now I know why it’s so hard to remember what the world’s like when I am hospitalised. I don’t look people in the face anymore, I go about anything I do with my head down in shame and fear. Withdrawn. Even at home, I don’t take in my surroundings much anymore. It’s chaotic and too busy on my eyes. They like to be closed, and words don’t come easily anymore either. I try so hard to be there for my beloved Shalimar yet it seems I am so vacant in my mind, she can sense it. And it frightens her as much as it does me.
I like that word – ‘imploding’ – for describing this parasitic eating disorder. It is like one is collapsing in on oneself as the disorder eats away more and more of your inner core. You pull away from others, curl into a protective shell as small and invisible as possible. In trying to feel ‘safe’, you find yourself increasingly alone with what’s trying to kill you, more endangered. ‘Exploding’ happens, too. I would describe that as the ‘fighting’ stages of this – when you’re resisting it’s pull as much as you can and it’s fighting you back. You fight to get the food in, it explodes it back out. You fight to save your body in every way you can, and it finds more and more violent ways to undo any good you’ve achieved.
Where to from here? I’m a mess. No matter how much or what I buy from the supermarket, when I try and put it together in my head, it doesn’t make any sort of sense. That’s if I am successful at the supermarket. I can write a concise list of what and how much I need, but being faced with aisles of cans and boxes and bottles, so many colours, so many numbers and letters and names and varieties and sizes and so on – I just freak out. Brain goes off. Autopilot takes over, I come out with a basket of stuff I haven’t a clue why I bought it and what to do with it. And none of it’s anything I even feel like eating. (Four packets of plain pasta… a bunch of different seasonings reduced to clear… one of every different variety of non-dairy milk in the UHT milk aisle… three tubs of margarine which I don’t eat and haven’t anything to put it on.. What can I do with that? )
The fruit and vegie shop’s still chaotic for me, too. If I can haul myself out there early enough in the morning, there might be a fair variety of stuff on the ‘reduced’ rack and that takes away the problem of actually choosing stuff. If it can be cooked and it’s colourful and tastes ok, then I’ll grab it. I end up with a lot of capsicums, apples, eggplants, tomatoes and sweet chilli, but that’s ok. I like them. The staples that I’ve always been addicted to – pumpkin, cabbage, carrots – are in season and plentiful. The hardest part is craving sweeter, water-rich fruits – they aren’t very easy to find at the moment. Lettuce used to be wonderfully refreshing when I could eat it raw, but even if I can (and I did try) at the moment my mouth is sore after just a bit of chewing and full of too many ulcers. Not to mention it’s fricken cold!
I really have to pull away from relying pretty much on just fruit and vegies though. They aren’t going to keep me alive – especially if I can’t keep them down anymore again. I’ve spent about $150 this weekend alone just on Up&Go drinks, Sustagens, etc – Nutrition Australia can’t get any supplements to me till tomorrow – though I rang them this morning and they might be able to get a few Resource+ drinks out to me today. But I can’t stomach them very well and they’re about a third of what’s in a Resource+. (360 calories and all your nutritional needs in one little popper) My taste buds must be screwed, too – it’s not helping that everything tastes like mud.
Whoa. All I do is complain! It’s a blessing to be alive, to be free again, to be back with my Sweet Shalimar. To sleep in my own bed again, wear my own clothes, keep my own times, be warm, have privacy, watch TV with teletext. Have nobody telling me that a few mills more of boiling water to soften my weetbix will blow my 1.2L fluid allowance for the entire day (since supplements and liquids in meals are counted, thirstiness is something I feel all the time in hospital) and nobody measuring my urine output, having to wipe my bum, wash me, even worse forgetting to wipe my bum – you end up smelly and damp from drip-drying into your undies. All dignity goes out the window in hospital. Not that I had any left.
I want to make the most of everything wonderful in my life. I want to stop taking it all for granted. It’s a miracle that I’m still alive, and I’m blessed with the most wonderful friends and some family. I have Shalimar, a place to live, clothes to wear, shoes for my feet, food to eat (theoretically, anyway) and all my basic needs. The biggest blessings are the people I love so much, and what’s left of this beautiful Earth. Je’aime la Nature.
I’m scared, God. I know I don’t talk to you very much anymore. Like everyone else, you’ve been shut out. It’s so hard to break down the barriers I keep rebuilding every time I manage to smash them down, and I’m tired, very tired. But please, my God, please hear my cry. Please have mercy – I don’t want to die, not this way. Please, I had hope that I could get around the mess in my head, that I had turned it around, but I find I am as trapped as ever. Will I ever be free, will I ever overcome this? I’m a survivor yet this battle is proving to be the most arduous I’ve fought. Terrifying how one’s own mind can be a stronger, deadlier foe than the physical dangers I’ve battled.
I can’t stop hearing [consultant] saying “You WILL die”, if the TPN was unsuccessful. I can’t help remembering how much of a struggle it was to insert a PICC line anywhere – my veins in both arms have been ruined now. I’m lucky to have even been alive to see another hospital admission – nobody thought I’d pull through last time and they all warned me that my body wouldn’t survive even one more physical relapse. What terrifies me is how sick I still really am in my mind. My body was bumped up about 10kgs really fast – but now I’ve lost nearly half of that in a weekend. Nothing was done for my thinking or my mind or learning how to care for myself. I’m trying so hard but as trapped and scared as ever, so powerless. Still fighting – ever fighting – but the feeling of hopeless futility is stronger than ever. I’m going down again already – and it doesn’t look like there are any options left now that will help me live. A long time ago, if I’d helped myself, I’d be far better off today. Now I’m beyond the point of having any control over this or even knowing how to fend off the blows in my head, the battering it gives me every breathing moment (even in my dreams/nightmares). Now there’s nothing left to even physically save me if I’m ever admitted to hospital again.
Please help me God. Help me help myself.
I didn’t survive all I have, to die of a piddly pathetic eating disorder.
Dear Fi, I can’t help but cry, I identify with some of this. The loss of dignity is really hard to ‘manage’. My dear Fi, try to look at yourself please know, as much as has been taken, YOU HAVE SURVIVED! You bravely got though, you are HERE know. My heart aches, I have tears , I want to tell your beautiful heart, your soul. It still loves deeply, you give out buckets of compassion,please take care of your, ‘little self’. Sending that compassion, understanding, and love that you really need. Not directed to your negative voice, that’s NOT the real you, it’s I think largely [rubbish] you’ve been told. Stating really hopeful,standing tall with you as you travel along this recovery road, NOT alone…..lol
Dear Penn, I am so lucky to have a friend like you who has so much compassion for others. Thank you so much for your care and compassion and the reminder that yes – I’ve survived. I know you too are a survivor. I wish I could help you and reach out to you as you do to me. It’s people like you who helped me start to look for that person they liked in myself in the first place, rather than keep hating and trying to do away with myself. Thank you and so many huge hugs to you xxx
You too have a loving compassionate heart, no matter what your ed thinks, I see the honesty and loving comments you leave for others. I wonder if you could ‘say’ something positive about yourself…might be testing….may your heart guide you!…lol….sending gentle hug, cuddle to Silimar.[or a nice pat?]
it’s so hard isn’t it? And yet, so so helpful to remind ourselves there *are* nice things. I hope you can too! I’ll take the challenge now and say I do know I’m gentle. And Shalimar loves cuddles – so she is purring back to you lots of love – sending cuddles from both of us to both you and your puppies. xxx
this is so heartbreaking. i wish that there was more available help and kind people to treat those including yourself, physically, mentally and emotionally. much love dear Fiona. xo
Thank you for caring. I’m in a much better place now, and I hope so much that health serices will leave this sort of treatment behind in the past. A little kindness goes a heck of a long way. xx
Glad you’re doing better, and kindness sure does go a long way!!
Fiona It must be hard to read these things you wrote as though perhaps even feeling again some of the pain.
I’d like to ask you something. There is a young woman (20′s) who I only have heard about through my nephew’s girlfriend …as it is her sister. She has been slowly becoming and now fully acknowledged anorexic. The parents had previously refused to accept it was that bad but after a call from the doctor saying if they didn’t get her some therapy help she would die….they finally got it.
Is there one thing that you think would open up this young woman’s eyes to what is happening to her and anything people around her can do that will perhaps turn things around …or is there basically the therapy at this point?
I noticed your comment and I have to drop in and reply. (I am having internet problems so I will get to everyone elses comments asap but not right now)
I am so sorry about the woman you know – it’s a difficult and heartbreaking thing to witness someone’s descent into anorexia and it doesn’t help to feel so powerless to help them either.
I’m glad she has a doctor who is on the ball here and made that call, too many slip through the net. I’m glad she’s getting therapy. It does depend on her age how much her family can make her do – I hope for her sake that she is willing to engage in therapy and work with her doctors at the very least. Denial and inability to actually see that they are sick are very common – there is a term that describes the inability to actually even realise how sick she is – agnososia or something like that (can’t find the word and can never spell it properly enough for it to come up in a search – annoying)
The most important thing is to refeed her. To restore her weight – because otherwise she cannot think, and if she cannot think, her attempts to engage in therapy – which is equally as important – will be pretty much useless. Starvation severely affects the brain. It’s impossible to recover without full weight restoration.
The best resources that I’ve seen all come from the F.E.A.S.T movement – http://feast-ed.org – they have a support forum for parents and carers too, and their facebook page is open to everyone – and is a really good source of support and information. https://www.facebook.com/groups/FEASTforparentsED/
June Alexander’s book Ed Said U Said is another really good resource for understanding what’s going on for her and facilitating better communication between carers and sufferers of ED.
Most important, remember to love her, and to seperate her from the ED. Hate the ED, not the sufferer. Never forget the true person, she’s still in there although it can be hard to remember that at times! And you can, and will get her back some day.
I don’t know what helps people get to a turning point – it’s definitely an individual thing. Gentle love and support I guess can only help. And prayer – and I will be praying hard for her.
I hope this helps – sorry it’s not much, but it might be a starting point.
Love and hugs – and prayers xxx
It is a lot and I will pass on the information …I’m sure it will help…thanks so much…Diane
I hope so much that it helped, Diane, and I’ve been thinking of you and your friend. I hope she’s okay. xx
You are the strongest person I know.
This is such a huge compliment to me, Miss Pistachio. You are someone I look up to as inspiration and a reminder that it’s hard, but it’s oh, so possible. Thank you xx
I wish I could be the real inspiration that you need. I haven’t been through nearly as much as you have and don’t know if in the end I would be even BE strong enough to do so. I know we’ve discussed this, and to you it doesn’t matter, but to me…I see it as I’ve fought one, maybe two battles and made it out alive. Maybe a bruise here or there. Maybe it was luck that I made it out. I’ll never know because I’ve no more battles to fight. YOU have fought COUNTLESS battles and have come out alive. THAT is not luck. That is skill, determination, and strength. It is a desire to live that I have never seen in a person before. You are amazing.
I agree with MissPistachio….you are the strongest person I know too. I’m glad you choose life even though there has been such tragedy and pain in it.
This line really struck me:
“There’s something very terribly wrong with me and always has been.”
I’d like to propose a word change, because it has a very different feel…I hope you don’t mind…..I would take out ‘wrong with’ (OK two words)…and put in “hurt in” or “broken in”…..The word ” wrong’ feels dead-end and akin to saying that YOU are wrong or a mistake….Your essence is part of God and is full of love. But You have been hurt over and over again.
And then this line makes me so so upset that the medical system is so inadequate and has perpetuated the hurting rather than assisted in your healing…..”No preparation. No maintenance. Just straight from two months in a bare hospital room to the chaotic big wide world.”
I will grant that it probably saved your life a few times. But oddly…a huge short coming of the medical systems is that while they are brilliant with crisis level emergencies, they almost perpetuate problems because they fall so short in supporting deeper long range healing. And the maddening thing is they act like they know it all.
Well I’m so glad you are alive and in our lives and I hope you get even deeper healing soon so you can enjoy life more.
Blessings to you.
to complete that word change, it would go like this:
“There’s something very terribly hurt in me …..”. Or
“There’s something very terribly broken in me….”
:
There is something terribly broken in me – yes.
I really like your suggestion, Gel – and it’s true. Changing the way we talk actually makes a huge difference. I was just paging through a book on trauma the other day where the chapter on how to stop flashbacks recommended changing the way we talk about the past. Talking in past tense. Because often we talk in present tense like it’s still happening and it does make a difference. In the same way, allowing ourselves to express those more negative thoughts about ourselves makes them much more likely to stick with us than not allowing that and changing the sentiment. I guess that’s a bit what CBT does – “I hate myself” becomes “I have a hard time remembering that I’m human and there is a lot to like about me” or I figure out what the actual emotion is “I am tired and frustrated and wish that I did not do x” rather than I hate myself.
I am giving myself a chance now. I didn’t do that when this happened.
Thank you for all the insights you give to me through your writing.
Love Fiona xxx
I agree…the strongest person I know. I hope you can even feel a tiny bit of how incredible your strength and will to live really is, Fi sweetheart. Its an honour to be your friend. Jen xxoo
It’s an honor to be YOUR friend, Jenn. I can’t wait to see you again very soon! You are another of those very special people who are to me, living proof that even hell is something we can come through and survive. Love and hugs to you xxx
Reading about your hospital experiences always gives me the creeps.
I still wonder how you made it through that! *hugs hugs hugs*
Regarding the situation with food … I guess being overwhelmed, helpless, frightened, and probably also angry and sad is what it elicits in you. With me it’s the same, although I’m not in that place anymore (most of the time at least, but I very well remember how it felt like when I was there a couple of years ago). Learning to eat solid foods (meals, gah) again was a huuuuuuuuuuuuuuuuuuuuuuuuge challenge for me! And shopping is still difficult and I better don’t do it without a list.
What probably helped me the most was not to face these things alone. When I’m on my own I often feel so captured inside myself, and so frightened. Sometimes I can’t decide which vegetables to cook. So what helps me is to have a plan I can stick to. It doesn’t matter if I eat pretty much the same things every day, as long as I eat something. When I’m very upset I can’t think anyway, so I just do what is said on the plan. It also helps me to go shopping or eating together with Peter, because he being there just gives me a feeling of normality and security, and that it’s okay to do them. So I wonder whether you could ask a friend or so to go shopping with you and accompany you while you cook something and then eat together. Doesn’t have to be every day, but probably once or twice a week or so, that you see it works. I don’t know, maybe you already do that, it just came to my mind.
Lots of love to you! And you know, you can always write to me! I didn’t have much time and energy to write back during the past days, but it’s getting better again and you know I’m always there for you. <3
Oh I so agree with you about how doing it alone does feel a lot more overwhelming. I am lucky because I have home and community care and they now come shopping with me, whereas in those days I was a lot more alone. I actually had support to go shopping then, I just was not able to let people see me buy food, I was too ashamed, so I would always ask them to wait outside the shop and they helped me carry the heavy stuff home. Now I have realised it’s okay, that they aren’t judgemental, and that my food isn’t even ‘that’ awful. It’s not awful at all actually. So it’s been good to find that out.
And going through the learning to eat again.. hard. The hardest part about that I find isn’t actually in the doing – once I get past the hurdle of starting. The hardest thing is it being okay in my mind. It being ‘eating’ instead of just this thing I do with food. I don’t know if I’ll ever get some sort of normal and functional relationship back again with food.
You have become such a special friend to me. I hope one day I can be as lovely to you as you have to me. Big hugs and lots of love xxx
Oh Fi. I was way behind on reading posts so I only just got around to this one and it shattered my heart. I hope that re-reading through this gave you a boost to boost things up again. To fight and dance and love your way through this constant battle. Because I am sure, like me, that by reading this you realize how far you’ve come already. Dips and relapses are put back into perspective when we realize our starting point. And oh my how far you’ve come already.
Be well dear. xx
Oh yes, it did. It reminded me I never want to go back to that place again, either the hospital or that place in my own life.. and that I have a lot of fight and dance too left in me for this battle. When I think of someone who has come a long way I actually think of YOU. Love and hugs to you – you inspire me xxx