It's okay to not be okay

I’m incredibly tired. It’s been far too many years, and the metaphorical concept of shit sh*t hitting the fan was truly made for describing the sudden and crippling impact of type 1 diabetes complications. It feels like being pelted with bullets that are constantly firing from a smoking gun.

But it’s okay to feel like we can’t cope, okay to feel like we need some extra help when everything feels too much right ? Even me? The idea is so foreign to me, it feels wrong, it feels like a betrayal to all I’ve ever believed, that I should seek that help.

Diabetes is relentless, all consuming, even when it exists without deep-set mental health issues.

Eating disorders are always exhausting, they strip you of strength, and I’m in tatters. It’s slow at first isn’t it? You can feel like a cat with nine lives that just skims the edge of danger, until suddenly you realise you sink in like sugar dissolving into a bowl of rice krispies, a crackling echo rings in your ears as you feel yourself questioning just how long that damage had been simmering under the surface, and every warning sign you brushed away.

I just want my brain to stop wittering at me, every day, a slow and deep hum that goes on and on. I ache inside.

It’s okay to to not be okay I am trying so hard to rewire my usual faulty belief system. But it’s like being a toddler and trying to walk and talk. I see where I want to go and what I need to be doing out in the world but I can’t will my shaky legs to move. I merely shake and continue to ruminate.

But it’s okay to admit you can’t do it on your ow anymore. Maybe me too?

It’s okay to let someone else care for you, particularly if your life depends on it, isn’t it?

Falling down the rabbit hole and embracing insanity would be a silent release, - slipping away, a relief of no longer having to try.

But there’s no way I don’t find that guilt, the shame in other places. But least of all, the fact I’d given in.. Denial just doesn’t fit me the way it used to.

Drained, wasted an wrung out like soggy dishcloth.

It’s okay to not be okay, right? To say it out out loud? To admit you just can’t do it on your own.

I’m just so, so tired. It hurts.

It’s time to take a chance. I have to.

By Claire Kearns.

My Recovery From Diabulimia

Please read this story of hope shared by one of our members. Recovery is possible.

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 My story is much like that of many others with type 1 diabetes.  I had just turned twelve-years-old when I was diagnosed and had no clue what I was doing but I checked my sugar levels and aimlessly injected random amounts of insulin in the hope I was getting it right.  Two years down the line the only thing I#d ever heard at my regular clinic visits was “you need to lose weight”.  This became something I rebelled against in the years that proceeded. This in the form of eating anything and everything, avoiding clinic check-ups and telling lies to the healthcare professionals and worst of all my family.

I got to a stage where I never checked my sugar levels and no longer took my background insulin.  I knew I was making myself Ill but found it hard to get back to a routine because I never really had a routine.  The advice I had been given as a newly diagnosed T1 was completely wrong by today’s information and knowledge into the condition.  I took the courageous step of writing down how I felt and what I was doing and gave it to the diabetic specialist doctor.  She was very kind and told me it was okay but nothing else was said and I was given no guidance.  I felt let down.  I continued with my life and no positive changes were made as I didn’t know how to do it on my own.

I started to cut back on the amount of injections I was taking after a trauma in my life.  My big brother passed away and for the first time in my life I didn’t turn to food for comfort, I felt the complete opposite and found I couldn’t eat without feeling sick.  I started to lose weight and it felt good but felt I needed to lose a lot more weight as I had reached my heaviest.  I became obsessed and found out that the less insulin I was taking the more weight I lost.  I regained my appetite and liked the idea that I could eat what I wanted and kept my weight low. 

By the time I hit the age of 27 I had it down to an art and had lost a large amount of weight.  I loved hearing people gasp and telling me how great I looked.  Someone told me in disgust that they could see my collar bones but this only played to my ego and I took it as a compliment.  For the first time in my life I could wear beautiful clothes, men found me attractive and people were telling me I looked great.  At this point I wasn’t suffering any side effects unless of course you couldn’t tolerate feeling extreme thirst, nausea and exhaustion.  I continued to live this secret life and lied to everyone that it was easy: “oh I just don’t eat as much” - which I didn’t and that it was just down to walking. This was the perfect diet and I’d cracked it.

Slowly though I started to notice my hair falling out,  damage to my vision was detected and I was vomiting a lot.  On numerous occasions I tried to gain some control and sought the help of my GP who in turn referred me to the eating disorders team.  Sadly it never helped me as the only treatment available was what would be the same for an anorexic or bulimic. They didn’t understand the complexities of this eating disorder and so I gave up my visits.

I felt lost and depressed; as if nobody knew how to help me even when they tried.  I wanted to help myself but wasn’t strong enough to break the cycle, my addiction to being thin.  It got to a point where I wasn’t injecting at all and ended up in bed for a week. I was so weak and tired that all I did was constantly vomit into a bucket at the side of my bed.  One day I got in to the bath to wash and warm my frozen body up. I floated there far beyond the time I should have and the bath was so cold again it hurt my skin.  I had no energy to pull myself out of there but I somehow summoned enough to do so and wrap a towel around myself.  I stumbled through to my sofa and lay down.

More than diabetes

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This topic turns the perspective around on me as DWED’s content writer, which is a little daunting, but here goes...

I still struggle with my eating disorder, I still have days where I don’t want to get up and face the world let alone engage with an audience, but I have come a long way since my lowest point, and I believe recovering is a process which is ongoing, not linear or with a specific measure.

Most of all I know that what motivates me is life, experience, interacting with the world.

Keeping busy means I don’t have time to pander to the eating disorder. It jumps up and down like a devil on my shoulder and it scolds me for not giving it attention but I try my hardest to tell it to pipe down or even to just shut the hell up!

Hospitalisation can be crucial to saving your life if in acute danger, but long term, I don’t think it works. Everyone is different but I have yet to meet anyone that has recovered without concrete achievements and endeavours to grasp on to.

Someone very dear to me said, “why do you think the people that recover seem to be the busiest people you know, Claire?” Food for thought, that. Work is not everything of course, but any kind of distraction is initially a far better source of activity than indulging your eating disorder. In time, and distance from those self-destructive associations, being more relaxed with yourself should become easier to bare.

It’s certainly a learning process. The most obvious thing that inspires me to keep going most of all is to write. It is the one thing I have always valued in myself. Recognition of that has been thickly buried when my disordered self-loathing has been ripe, and so I uncover it and blow away the dust with words across a screen whenever I can.

By Claire Kearns.

Seeds can grow

Seeds can grow and flourish.

I refuse to be a fucking shrub, alright?! (Subtle nod to the film Girl, Interrupted. Had to.)

SEED stands for ‘severe and enduring eating disorder. I only actually heard them refer to me as such in the past year or so, and was taken aback to have it used so candidly. By ‘them’ I mean my current eating disorder service providers.

A SEED patient is classed as someone with an eating disorder that has lasted beyond 7 years. Why 7 exactly I do not know, but that’s the line they draw. It feels like a line between worthy and not worthy of help. Like you suddenly fall through cracks into shadows, case aside, hopeless.

I understand that it is a way of being realistic about future expectations, of making it okay to only aim for stability. I agree that someone with a long history of disordered eating should be regarded differently to someone with say a year of anorexic or bulimic behaviours, and expecting big changes is too much. But I don’t think anyone should ever be labelled as unable to ever achieve recovery. It’s disheartening. It’s an opinion that colludes quite easily with the thoughts inside your head that tell you that you are worthless and good for nothing.

But boxes are for objects, not people. Language and attitude is key, because it’s not just that word ‘SEED’, but the way I have been made to feel. Disregarded. Left on a dusty shelf with rag dolls and unwanted stuffed animals.

12 weeks of CBT just last year was of help to me. I managed to make behavioural changes and start to tackle my negative thinking patterns. Yet because my weight chart didn’t show a steady line upwards from week to week they concluded it unsuccessful. My GP stressed that more therapy would be beneficial but they just refused to offer anything further. Now I just see a nurse every few weeks and it seems the only objective is to weigh me (a trigger every time as I try to stay away from scales these days) and make sure I am still alive. I actually last had an appointment around 2 months ago as have been waiting for a new appointment in the post, so really that shows how much I am of concern.

Of course I also see that early intervention is being implemented a lot more than it was in the past. This is a really good thing, and indeed best use of the light NHS money pot. It just means that for those of us that are of the old ‘system’, with the approach whereby not much help would be available until you reached an acute stage of crisis, when suddenly it would be all sirens flashing, it’s tough. We drew the short straws, pretty much. It stings.

Today I have seen how the approach can be different, though, it can be better. I attended my first session at Kings College Hospital which now has a specialist team that treats diabetics with psychological struggles, particularly eating disorders. My GP made the referral and I was so relieved that it passed by the commissioners without any trouble. I have come away from this appointment with renewed hope.

Therapy was very much on the agenda. Some med changes. Most of all, understanding. No weighing, just listening.

We need more places like Kings, desperately. An eating disorder alongside diabetes must be tackled differently from more typical eating disorders. Losing trust in clinicians is inevitable when they continuously get the facts about your chronic condition completely wrong. Some of the things doctors have told me about type 1 diabetes are just laughable. Of course, we know this illness inside and out, we are the experts, more so than some psychologist or psychiatrist that did a few modules on diabetes in medical school.

We must keep on pushing for more specialist pathways like that at Kings, more open doors that are widespread. Nobody should have to feel beyond hope and that they do not have the support to try and make changes. Small changes are so important.

An eating disorder is not living it is simply existing. Just like a seed, contained, without water it will remain as it is. But just a little sprinkling of rain can be all it needs to begin emerging and uncurling itself with green stalks and sometimes, eventually, rosebuds. Let’s see.

By Claire Kearns.