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Archive for the ‘Medication’ Category

 Medication freeYes we are still here! But our journey means the blog is not something that now gets a lot of posts. I debated with making it an advocacy, education blog etc but that was never the point of this blog. There are better forums for the advocacy ED awareness but not here. This is our story, Sophie’s story and I do not want to detract from that. It is also our story told from my view in most cases rather than my daughter’s. Now she is 21 and well, the story is now ALL hers. I am merely a by-stander and whatever or wherever her future takes her, the story is her’s alone now.

As a quick update, she is now medication free. No more anti-depressant!!!! A huge move forward after being on it for 5.5years. Soph has been toying with the idea for several months, but cautious of her anxiety and depression bouts that possibly the medication might be helping. But considering the depths of the ’bouts’ I do wonder just how much the medication was really helping. Teenagers change so much in every way (psychologically, emotionally, physically) as they become adults, that what was started at 15 is very probably not overly useful at 21. Many anti-depressants can also stop working as effectively long-term.

So med free. I demanded she take the weaning off process SLOWLY. INCREDIBLY.SLOWLY. Got the ‘awww mum’ whole drama. But I didn’t want the cold turkey, medication backlash that happens. Coming off medication like these means months before she will be fully herself and functioning without drug related responses. Her brain and body will need to change and readjust to normal state for many processes. She is in effect a very different person from the child at 15. Not just because she is now adult, but also because of the long term medication. The anorexia alone has made her a different person. The medication has made it a bigger difference from then to now. Too many psychological, mental and emotional changes that is over and above normal growth and change.

She’s been med free for about a month. Too early yet to tell how she will go. Life needs to happen for her to see if she can manage herself. She is still home on uni break for a few more weeks, then back to reality. This time round she has been home for almost 4 months, so it will be a bigger drop back into uni life and her living reality. But she is brave and courageous for taking the step that needed to be taken. A new freedom and learning who she is now without any props is the only way to go!

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(… or reflections on our anorexia journey)

The uni break went so quick. One minute she is home, next minute gone. lol, well almost. She went back earlier, so excited for the new unit, then realised she was back way too early and desperately homesick this time. She came back home, instead of toughing it out. She said she had a much better chance of not falling into depression or anxiety by coming back home. As always I observe everything she says and does. Sophie’s maturity surprises me to the level she has achieved (within a mere several months), her insight and empathy (so apparently missing) is finally blossoming. Doesn’t mean she was always calm and not hysterical at times, but a definite switch. Before she went back, the aspie side of Sophie was all organised. Doctor appointments made, counselling appt made, new referral appt with ED specialist made, classes sorted, disability needs sorted. She just ploughed through it all. This is the plus side of having aspergers.

The new ED specialist is more of a counsellor but has the insight and understanding of what having an eating disorder in your past means for you presently and how you relate and cope with life. Whilst Sophie has to travel to this centre, I am pleased she has taken this on board as an extra coping and learning tool.

It is also time to start weaning her anti-depressant medication. Five years is a long time to be on the medication, and now is the time to slowly (painfully slowly) wean her off and see how she responds.

For me it’s been a time of great reflection. 5.5 years into this, 5 years from diagnosis, 3.5 years from full weight stabilisation, 1-1.5 years with no anorexia behaviour or thoughts. It’s been an amazing ride, that only those who have been here know how crazy, mixed up, painful, the intense highs and the intense lows. Moving from small picture, every moment, every day stuff to big picture stuff that encompasses months. Being part of a new parent support group too, has been part of this reflection. I have had to think back to the very beginning, remember things I thought I had put away forever. It’s actually been a painful journey for me, but it has honed my thoughts and beliefs about eating disorders and taught me to be far more articulate and to advocate on a higher level.

Thought I would put together a summary – seems a timely thing really.

our anorexia journey

Biggest Mistake
* under estimating how long, painful and soul destroying this journey is
* feeling guilty that I had somehow caused this

Biggest Misunderstanding
* that we could get through this in a couple of months – not years

Biggest Regret
* not demanding more from the health system around us or challenging the wrong beliefs at the time

Biggest Fear
* wondering if at times I could continue to care for her
* her dying before we could turn this around into recovery

Biggest Lesson
* how quickly you go from health to critical and in a hospital bed
* how you can never never negotiate with an eating disorder
* your child is totally separate to the eating disorder behaviour
* comorbid illness are a part of eating disorders and make the struggle to recover harder and can become a part of life afterwards

Biggest Myth
* you don’t have to be skeletal to have anorexia
* relapse is a valid and normal part of recovery not something dangerous, fearful or not normal
* tube feeding is not a shame or psychological issue. Not now. Older women struggle with this and parents have their own hangups about this. The reality is very different for those in their teens who are tubed fed.

Biggest Support
* those I met going through this journey who were travelling it too
* having an amazing, strong, recovery focused team of five professionals

Biggest Surprise
* the inner eating disorder voice in my daughter’s mind. Like getting to know the devil himself.

Biggest Problem
* health professionals who still do not know how to diagnose or treat eating disorders
* the lack of resources (both money and treatment) for parents and sufferers to access to get treatment and recover.
* the different approach, government understanding and health systems in each country that actually hamper treatment when the illness itself is the same regardless of country.

What I did Right
* early detection, early intervention
* standing with her despite the horrors of the illness and behaviour and walking with her to recovery

What Benefits Did We Gain
* obviously my daughter’s life and health but also gaining a deep, close and open relationship with my daughter
* gaining some wonderful new friends who truly understood and still stand by us
* an intimate and highly experienced understanding and knowledge of eating disorders that we can share with others

What Did We Lose
* the years my daughter cannot get back of her normal growing up time with her peers
* friends

Before Anorexia
* my daughter was anxious, highly strung, a perfectionist, a misunderstood kid with her peers
* I thought I had a plan mapped out for some kind of normal existence like every other family raising teenage kids
* I thought I was already a strong mum because of domestic violence.

After Anorexia
* my daughter knows herself so well compared to other kids her age. Whilst this is a plus it is also a negative, as she struggles to find a close friend
* I learned I am stronger than I thought, I learned a deeper side of me, and I learned the dreams I had no longer ‘do it for me’. I search deeper.
* I am still finding who I am now, I no longer want the same dreams. I still struggle to find my way around a kitchen after so many years tied to anorexia cooking and preparation.

The Blog Role
* ended up being far more than I ever thought, and gained me so much privilege to talk to others on all levels in this journey. Thank you!

What would I do Differently
This is very personal. It would be to leave our dysfunctional family domestic violent life instead of waiting til further into recovery. I had planned to leave just before my daughter started down the slippery slope. I thought (wrongly) that staying might have been better for her health. It would have given full FBT a better chance and a safe environment that had no anger, expectations, eggshells etc in it.

Family Based Therapy
That eating disorder recovery is NOT a one-size fits all. Despite the best statistics, FBT (Maudsley, FEAST, FBT types) don’t always work for some families. This is not a point to be guilty about or feel like you have failed. It just is. Means you just go and find what does work for your family and how to care. As long as there is forward progress into recovery then you are going great with whatever you are doing.

Families are not to blame
I will keep saying this shouting it from everywhere. Eating disorders are genetic based. Families do not cause eating disorder and are not to blame for an ED developing.

Overall
My faith took a pounding, became far more realistic and more honest. Like David I adore but I will question and ask.

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“Really???” I say.

“No. You get up in the morning, you get things done. You have moved mountains since I have known you (about 3 years). You are amazing ……. It’s like I have to sell you yourself so you might buy.” (my counsellor).

depressionSo I thought about that. Worked on that for a few weeks just to see how it felt to not be a ‘depressive’.

I tried to push aside the wave of down feeling and the thoughts of just not wanting to breathe anymore. Told myself I am not a depressive. It worked occasionally. The rest of the time I just breathed through the wave – like usual.

Sorted through my memories of whether it was my situations that made me depressed. But seeing as I remember being ‘melancholy’ since late primary school, I figured I couldn’t really say my situations caused all the depression. Just living is enough to push me through the rabbit hole.

Wondered (briefly) if I should stop my medication. But the thought of the waves of depression and panic that set in when I not medicated made me think that this may not be a safe option – yet. Yes, I do feel more and am ‘lighter’ when off medication. It just the flip side is stronger and deeper.

There are lots of ‘depressives’ out there who are highly functioning. We do get up, we do keep clean, dress nicely, do our jobs, care for our kids. Just because we can, doesn’t mean we are less depressive or less deserving than those who are unable to move out of bed. I almost felt I had to apologise for being a ‘doer’.

This last set of sessions I have done with my counsellor (to help me cope with Will and the wretched consequences of my ex) has taught me two things. One, I can actually see and integrate the counsellor’s behaviour suggestion changes. I am now removed enough from my past and moved on enough, that I can actually utilise the tools she has given me. That has been a real move forward, of understanding how therapy can truly work. Before I have always just had too much of just living and surviving to be done and using my counsellor to dump feelings and feel safe. Two, that she has turned my mind to ‘just maybe’ I could challenge the genetic depressive diagnosis and see my life through new eyes.

I don’t know yet if she is right. My pensive thinking and try-outs haven’t convinced me yet I could be totally free, nor give up my medication just yet. The dictionary description of depression still describes me. But she has challenged me to think deeper, see clearer and not just cover myself with the usual blanket of submission. It means being more aware of myself and what is happening around me. It is also like loosing a part of my identity and learning that ‘maybe’ what I thought I was, I am not. A new day, a new tomorrow. Exhausting and a bit scary. It is easy to skip back into my zone of ‘depressive’ – I know that place, it has no surprises or effort attached.

Will keep you posted. It’s a trial in process.

depressed

 

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I asked for help, now everyone knows
but I don’t want everyone involved.

out in the openThese are my sons words. I remember them being my daughter’s words.

They struggle for so long on their own, trying to cope but sliding down the slope into desperation. So they open up and call for help.

Suddenly they find themselves in the spotlight, on everyone’s radar. They have parental attention, medical attention, and no one is letting them go.

All they want to do is hide again. Yes they want help, but on their own terms in their own time and often they regret asking in the first place. It is ‘comforting’ sitting in their own private hell and it seems far less painful and more safe than the prying outside world.

But as our counsellor said, it’s no longer his burden alone. His team are committed to help and help they will. He is top priority and his NEEDS not WANTS will be met.

And that’s the clincher. NEEDS not WANTS. Often our wants are not healthy nor useful at certain times. What we NEED is essential and demands attention. My son (and daughter) need support, medicine, monitoring etc for his mental health and safety. His wants aren’t disregarded and are respected. But for now are on the back burner so to speak. Having this explained respectfully and gently means to my son, he knows he is heard and respected.

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I have lost count of the families who still want the magic fix. You know the one pill solution – “where is the fix they cry”. I understand how they feel, but the reality is there is no FIX. There is no magic pill or treatment. No one stop shop that has the answer.

Research is making progress and yes there will in the future be better outcomes, but not yet nor in the short term future. The complexity of eating disorders will always be there. Research shows that environment, genetics etc all play a part in the development of eating disorders.

mixed eating disorder treatmentsSo treatment becomes a mixed bag.

  • NG feeds, or
  • NG feeds + food by mouth, or
  • just food by mouth, or
  • nutrition drinks + food, or
  • just nutrition drinks, or
  • inpatient then outpatient, or
  • inpatient then therapists, or
  • mix of inpatient and outpatient
  • Maudsley or other FBT
  • doctor/nurse/medical regular appointments

… catching on?

Therapy will be a mix of:

  • dietitian/nutritionist
  • psychologist/counsellor
  • psychiatrist/paediatrician
  • CBT, DBT, hypno, massage, expressive therapy (art, dance etc)
  • journals/diaries
  • meal plans/meal diaries
  • support team/friends/family
  • intuitive eating
  • medication/supplements
  • distraction techniques/recovery toolbox

Personally it is:

  • personal goals/achievements
  • commitment
  • hope
  • honesty
  • learning both the costs and benefits

You may find other ways help you than what I have listed or know of. It isn’t one size fits all. But what is important to know and understand, the mixed lot of therapies and treatments is what achieves recovery. It is a lot of work and struggle to find what works for you or your loved one. But one that is worth it.

Ignoring the ED and hoping it goes away, or hoping someone will give you the magic fix is not going to bring recovery.

Hoping you will be the exception to the rule is also a very rare outcome.

Recovery is real, full recovery is also real. Finding the mix that works for you is what creates and grows the recovery.

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self-love and compassion

 

You can only get so far in recovery or make recovery even more difficult than it already is, if you lack self-love, self-care and compassion for yourself. Most have to be taught that self-love is a good thing. You have hated yourself for so long, felt so worthless and unloved or unwanted by everyone, that it is a new learned concept to relove yourself. It can be a life defining moment, when you realise you can love yourself (and are worth that) and no longer compare yourself to others.

In a nutshell, self-love and/or self-care means:

  • following your meal plans
  • listening and implementing the things you learn at your therapy sessions
  • being open and honest with your team and your family members
  • caring for your basic needs – brush your teeth, comb your hair, get dressed, put make-up if that’s your thing
  • talk nice to yourself
  • treat yourself even if it is just small things that don’t cost anything
  • beginning your spiritual journey (don’t forget this step, many lives are deepened and changed by this. God isn’t not an old fashioned concept either)
  • doing things you love not because they express who you truly are
  • going for walks or some form of exercise
  • getting enough sleep
  • keep a journal or gratitude list
  • taking your medication regularly and on time
  • staying away from scales and your known triggers
  • staying away from social media as much as you can (seriously these sites can be so demoralising, particularly Tumblr)

And in the end, be compassionate with yourself. You will get tough days, days when you break your recovery plan, relapse, binge, purge, restrict or self-harm. Don’t beat yourself up, don’t put yourself down. One or two blips doesn’t mean the whole thing is destroyed. Take note of the blips, learn something from them if you need to. Often blips provide inner insight as to what stresses you. Pick yourself off, put it aside and start again tomorrow. Don’t bring the things that happened yesterday into today to spoil the new day.

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Two weeks ago Sophie’s psychiatrist challenged her to self-care enough to make a difference to her life. Dr W was very no-nonsense about her challenge and really wanted Sophie to pick this up. It was not only about learning decent self-care but also to realise that half of Sophie’s whining and poor attitude was all self-inflicted and would not be there if she changed her life a bit.

Surprise, surprise Sophie actually picked up the challenge. First time EVER she took notice and did exactly what the psychiatrist has asked. (lol, how long have we been seeing Dr W – exactly 3 years – can’t hurry these things).

So Sophie has got up earlier, gone to sleep earlier, not missed meals, eaten better, got dressed most days. And wonders of wonders, even cooked two family meals.

She has noticed a difference. Bit rude to say I told you so. But hey self care does work and it is important to you mental health and your emotions. The wheels are starting to fall off the early starts and having to push herself to achieve this, but a lesson has been learnt. Sophie can changed how her days look, she can change how she feels about life and living. It might seem like small potatoes to many, but to her and others like her just getting out of bed earlier and getting dressed can change a whole day.

We have also managed to get down to 1/4 of the olanzapine every day. The next step now is to miss a dose once a week, then twice a week and so on. Bit scary this next move, but it is now time to try. Now the HSC trials are over, TAC entries are in, and she is finalising her english major work this weekend for lodgement, there is space before the main HSC to start weaning back more on the medication.

Sometimes you think how much longer will all this take, how long the distance is behind you and what is still up ahead. Thankfully we are not given that knowledge, I think that would be just too much. A day at a time, achieving small victories, gradually changing negative into positive is enough to cope with.

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