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Posts Tagged ‘living with an eating disorder’

What they don't tell you about eating disordersWelcome to all my new followers. Thank you for joining me. Whilst it’s lovely to have you hear, it means though, there are more and more searching the internet to find support, resources and answers when facing an eating disorder.

Thinking back on our experience and what we have travelled through plus what others have shared, there is a list of things that aren’t told to you when you start this journey. You find them out yourself the hard way and often alone. Some come as a surprise, others you realise are normal but you didn’t think about it. So I thought I would list them, just so it’s out there and because medical support teams don’t tell you.

  • You (the carer) are often the front-line and sometimes only line of care. Funding and resources can make it very difficult to get what you may need.
  • This is going to be a long journey. You won’t just get well after the first ’round’. It will take years in some cases.
  • You need to treat yourself for self-care just as much as you care for your loved one. It’s essential to survival.
  • Your marriage or significant relationship will be tested to the max. Take care of it.
  • This is NOT your fault. It’s not your parenting or your family. It is a genetic pre-disposition.
  • How exhausted and OVER it you will be. How refeeding is draining. That you will have a list of appointments on a weekly, fortnightly, monthly basis that you might have to drive miles to.
  • You will find yourself up against schools, doctors, clinics, friends, family. Most have a ‘warped’ idea of eating disorders. You have to explain and educate just to get the care your loved one needs.
  • You will need to swat up on symptoms, treatment, research. No one else will teach this. As you are the front line you need to know this stuff.
  • There are not enough resources or funds in place to provide what your loved one or you will need. That includes treatment centres and hospital beds. And a lot of written resources are often out of date (badly).
  • You are not alone – even if it feels like it. There are many of us on the internet, facebook and other medias who are travelling this journey and can support you.
  • Your child will become a totally different person – loud, rude, violent, abusive, manipulative and lies. This is the illness not your child.
  • Logical, clear, rational thinking will not be part of your loved ones thinking. The illness is in full residence and they are not able to eat, care, stop or save themselves when they are very ill.
  • When really sick, they smell. This really threw me. My beautiful daughter smelt like death – sour, old and decaying. The body is breaking down and the smell starts from a relatively higher weight than you think.
  • Watching the lanugo (fine hair) grow on your child body. Also quite freakish for a parent. It’s the body’s way of keeping warm when there is no fuel to feed it or enough fat to warm it.
  • Night-time heart rates go much lower than day time. Whilst doctors do the medical observations they only ever do day-time, standing and sitting ones. At very low weights the night-time heart rate is actually very scary and can be dropping into intensive care levels without you knowing it.
  • Medical professional won’t know it all. Medications are one big area they are in the dark about. It’s trial and error, of sometimes many medications tried or grouped to find something that might work.
  • That relapse is every parents nightmare, when in actual fact it can be monitored and cared for quite closely by an aware and caring team.
  • There will be a before ED and an after ED state for your family. It will affect everything and the way you live and think for years to come – even when your loved one is fully recovered.
  • Eating disorders are a family illness. It will affect all the members and relationships within.
  • How quickly your loved one can develop an eating disorder and become critical.
  • The blood results will stay ‘normal’ for ages then suddenly drop at the last possible minute. Make sure you have medical support around you.
  • Hope is real and full recovery possible. Even good levels of recovery are better than the original illness.
  • Associated and long term digestive problems, bowel problems, bladder problems, over health problems, teeth, bones, Vit D, Vit B, calcium levels.
  • Despite all the pain, fear and the enormity of it all, you will be given strength to do this.

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No new textbooks, no new courses. Just confusion, doubt, insecurities, and maybe I shouldn’t do uni. It is also HSC trial week for her.

The high of the last 2-3 weeks is gone, replaced be the low of depression, better off dead than choosing the wrong career mindset.

I am not surprised. The high of the science degree had to fall. History is showing that she gets a high, rides it for a while with a new idea, then plumments. It is finding the key to getting her to listen in what state she is in. She doesn’t fit Bipolar criteria but the highs and lows do feature in her character.

She doesn’t have to go to uni, no one does straight away after school. There are so many paths to careers that the tension and expectation placed on the HSC is not needed. Unis and university agencies push the market to get students in. It’s all about bums on seats and government funding. Taking time after school to think things through is a good idea. Far too many student race into degrees they find they don’t like or want, so chop and change degrees (bigger HECS debt) or just drop out.

Eating disorders change the field you were playing in. What you wanted to do or be can radically change, whether as a direct result of the eating disorder or through the therapy given. Recovery is a mix of being the person you were and a newly birthed person. You also have to take into account how you are going to manage away from your usual support routine and team. You can’t ignore this. No plans means a very real possibility of relapse. Even with plans it is going to be hard.

Sophie hasn’t even thought of how to cope with part-time or full-time uni, away from home and how to sustain her health. She just wants to ignore her past and pretend she can just ‘do it’. It doesn’t work like that. Like it or not the eating disorder goes with her and she has to learn to live with that and make exceptions, compromises or whatever is needed to protect herself.

Today is psychiatrist day and counselling next week. Hoping both may help sustain her a bit.

 

 

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It doesn’t matter how far you run, or what you do, the eating disorder is still there. You can hide ostrich style, change cities, new job, new friends, new routines, but it won’t change the inside. It can of course help and support recovery to move away from old memories and environments that harm rather than help. But you need to be aware that lurking within is always the eating disorder, waiting for a chink to sneak through.

I didn’t expect this week to be a picnic, but having not spent such enclosed time with my daughter does get on your nerves. Every remark or comment is filtered through the eating disorder. A look or roll of eyes can induce sulks. Super sensitive to everything around her. The museum had a display of the human mind, which for her meant “EATING DISORDER”. How dare I bring her there. Eating anything she wants and then deciding not to have the cone on the ice cream cause it would be fattening. (??)

Didn’t help either that she forgot to take her anti-depressant twice this week. I know we are out of routine so am not fully surprised. But any reminder to her if she took it receives snarls and condensation. She only owned up after last night’s melt down. I was trying to find the trigger. Which as everyone knows, anything can trigger ED behaviour. Today hasn’t been a lot better, moods up and down as the medication takes hold again.

Her obsessions come out stronger too. We have seen and sampled everything Japanese. I mean everything. It is black and white, all or nothing. Which adds to this week’s struggles. I feel for her, because she knows this too and feels slightly off balance all week. Taking someone out of normal, daily routine and relative safe/comfort zones can produce anxiety and insecurities. Multiply that for someone who has an eating disorder. It pushes up the anxiety levels, making ED behaviour, sensitivity, OCD etc much more heightened. For Sophie this week is a high as in a chemical fix high. Next week is the down, back to home and reality.

Rather wet and cold today, so wanted to see Brunswick Street, but had no wet weather gear. We went as far as we could until we were too damp to keep going and my daughter had whined enough. Did at least manage to find a great coffee shop. <3. At the moment air con going at hot level to dry us out and then we can start again.

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