Stalemate with therapy

 I often write my blog to express my frustration, not at individual services but at my frustration of trying to get the right help at the right time for my eating disorder, especially times I'm struggling more.

I first asked for help for bulimia in 2002 after it affected me doing what was a dream job at the time looking after rescue horses and I had to move back home. That was when I first openly admitted my eating was a problem, before then I hadn't seen it as a problem and was in denial if anyone confronted me about it.

In 2002, apart from some mild self harm when I was 14, I didn't self harm, hadn't took any overdoses, I just had text book bulimia.

My gp at the time referred me to a community psychiatric nurse (who back then had very limited training in eating disorders unless a specialist) so I got no therapy, saw a few other nurses and psychologists over the years who told me they didn't understand eating disorders and after a few years a local eating disorder service was set up but they turned down a referral. By that time I had struggled for years and had a stressful job and ended up self harming but still didn't get any help for the eating disorder or even the self harm. I took 3 overdoses in one weekend after prozac made my mental health worse and still was just sent home no mental health support.

In 2007 I had been struggling since I asked for help for 5 years and I had to have a pacemaker for my heart as my bulimia made a hereditary heart condition worse. Still the only person concerned was my heart consultant.

In 2009 I had been going to a support group in Hull for eating disorders who helped my dad contact mental health services to complain no one was helping me and I got referred to an eating disorder clinic in Leeds where I saw an outpatient nurse but then was classed as too severe for outpatient and went inpatient but for bulimia you only got an 8 week symptom interruption program and was told to get therapy in my local area after discharge so I came out no better than I went in and my care co ordinator was off sick for my whole admission and local eating disorder services still wouldn't help so I told myself I couldn't self harm and couldn't be sick but I think I binged and restricted and obviously hadn't dealt with the underlying causes of my eating disorder but I tried to focus on wanting to be a nurse. Upto this point I had consistently worked since I was 17, didn't have a chaotic life and worked  alot and spent time with horses but had social anxiety. I even did agency care shifts when I was on home leave from the eating disorder clinic (because of this I was classed as too high functioning to need help). I did my level 2 maths and did a year 0 foundation degree in hospital and health (used to be the access to nursing). I got bullied on that course and relapsed badly with my eating disorder and self harm but got through an interview and maths test for mental health nursing and got offered a place at uni.

I finally got a replacement care co ordinator, 2 years after being discharged from eating disorder clinic and had to chase them up constantly despite having a few incidents of self harm that needed hospital treatment. The new care co finally got me a referral to the local eating disorders service and I saw a good eating disorder therapist for 20 sessions of cbt for eating disorders and it started to help but it was for a 10 year problem by then and then the therapist moved away, were still in touch and she has often been supportive with advice. 

I then felt more hopeless and that my eating disorder would never get better and I became severely suicidal and took about 60 overdoses over 2 years I got told I had chronic kidney disease and later got heart failure symptoms after a large overdose of co codamol. I eventually got referred to a complex cases team and although they weren't experienced in eating disorders helped me with support and confidence in other areas of my life and I was still hopeful I was going to get some individual therapy that would help my eating disorder and anxieties and low confidence and had kept my place open at uni for nursing.

But then the complex case team lost funding and I went into crisis again and local services said they had exhausted all avenues with me, I couldn't be admitted to the mental health unit just to help me stay safe and there was no therapy.

We found a personality disorder hospital in London as most complex cases get diagnosed with personality disorders especially borderline but eating disorder symptoms can overlap with the diagnosis, unstable moods because of unstable blood sugars and anxiety and depression caused by the eating disorder, impulsive in 2 areas of life, binge eating and spending money on binge food, self harm and suicidal to punish myself for eating and the hopelessness of living with an eating disorder, unstable self image because of confidence issues because of the eating disorder but I went to the hospital in London but by then I couldn't go out with taking an overdose so took more and the more I took the more angry it made the other patients as they said there was a no self harm rule including eating disorder behaviour but obviously I couldn't get better just by being in a different building. I was then homeless as my parents couldn't cope with me at home anymore and knew whilst services could send me home to them they wouldn't help and it got we were all scared I was going to die ( although I felt hopeless and suicidal there was still the part of me didn't want to die having not achieved more in my life). I was admitted to the mental health ward and the homeless team came to see me and the mental health rehab but then I had a severe ligature incident where I  was found unconscious and I was banging my head constantly and was sectioned.

I spent 3 months on the local mental health acute ward where I got no therapy and spent most days just getting restrained and wearing anti ligature clothing in a bare room without even bedding apart from a fleece blanket. I then got sent out of area to a personality disorders locked rehab. My care co at the time tried to get me referred to places that treat eating and personality disorders (which there are units for) but I got sent somewhere where they said they didn't deal with eating disorders and although I had been sent there for intensive psychology, the psychologist left, activities were often cancelled and I just had a support worker with me constantly to stop me tying ligatures.

I got severely ill with meningococcal septicaemia and pneumonia and was in the high dependency unit and my kidneys failed and I got scared of dying ( despite being suicidal a long time before). After 10 months sectioned in hospital, I was discharged to a mental health rehab who helped me live back in the community but couldn't help my eating disorder but despite being in my 30s I had never lived independently since my mental health led to me having to move back home at 21 after being away at uni and a job away so I doubted my ability to manage on my own without support so moved to my own flat with support and started some volunteering work with horses and qualified as a horse riding instructor. But I relapsed with suicidal thoughts and took more overdoses again due to my eating disorder and low confidence when I put more pressure on myself as I never feel good enough.

In 2018 I joined a choir but my bulimia was bad at that time and I had my gallbladder out and the wound took ages to heal due to the strain on the stitches from being sick. I then took an overdose instead of going to choir as I felt too fat in my t shirt (obviously not a rational thought), but as I got more confident and felt more accepted at choir, my self harm reduced and my eating disorder became more manageable. I still had support workers doing my meds, helping me food shop and go out socially as apart from choir once a week and seeing my horse and volunteering my friends had busy lives and my social anxiety made it hard to go out on my own. But then I had a care co then who told me I was too high functioning to be in services (I hadn't been high functioning for about 7 years)  and I still needed help for my eating disorder and would have gone back into crisis if had suddenly lost my support so I went to a group therapy for personality disorders which gave me 2 years to set goals of getting back to some work and reducing support and I was told it would help me eating disorder or once I had done the therapy eating disorder services were more likely to see me if I was more stable with self harm ( even though if I had been helped many years earlier I wouldn't have self harmed as the eating disorder was the cause of the self harm not the other way around, my Ed was never to self harm was to feel in control of my weight and life, and to deal with anxiety and not feeling good enough).

During the therapy we went into lockdown so my plans to do some volunteering and work couldn't happen but I did better in lockdown as I felt more confident on zoom and as wasn't going out wasn't having to deal with my social anxiety and between the group therapy and choir on zoom I was talking to people more than I did in normal life as people had more time to talk and focus on friends.

I completed the therapy though and was still struggling with my eating disorder sometimes more manageable than others but went back to work and got 10 sessions of eating disorders therapy where I was told eat 6 times a day not what or when or how much so afterwards I did a calorie counting diet that Facebook advertised to me and some friends had done similar diets and I felt positive it was a way I could manage my eating disorder and i managed it for 11 weeks and lost weight in a fairly sensible way,  but then as I put more pressure on myself my anxiety and depression got worse and it got where I felt guilty about all calories and despite telling mental health worker I was struggling with thoughts to overdose was told to go back in a weeks time to a once a week post therapy leavers group which was basically a coffee and chat catch up group. So on my birthday last year I took an overdose because I felt guilty I had eaten a yogert and for the past year I have struggled with periods of restricting and periods of bingeing and purging but eating disorder services won't help anymore and I was told to do dbt therapy which was sold to me that it would help my eating disorder and I would get 1 to 1 therapy but it doesn't help with food only emotions which has helped me with self harm and feeling suicidal in the past but doesn't help the eating disorder. 

The idea of dbt is to build a life worth living but I had good things going on, I was loving choir, horse riding, swimming, felt a sense of purpose going back to work etc. But mental health workers thought I took overdoses because I  wanted care rather than it was triggered by putting more pressure on myself with work, volunteering, totally losing support at my flat and even going on a choir tour which although I wanted to go I was anxious about and wasn't getting any mental health support to deal with my anxieties (I had hoped to have been able to work through it all whilst in the group therapy but lockdown meant I couldn't before the therapy ended). Anyway I started dbt and did a module to deal with crises but it wasn't helping the guilt I feel day in day out about food and even things like choir that normally motivate me to eat enough to be safe to drive to choir etc. don't always work when the eating disorder  "voice" gets strong. In dbt ghe goal is to build things into your life to make " a life worth living" but I need help to manage the eating with support to then have the energy to be able to do more. I often end up spending alot of time in bed to try feel well enough to go to choir, work and to see Warwick my horse.

The dbt therapist got me to do a vision board of life goals etc. but my eating disorder and the effect of how it makes me feel physically means alot of it isn't achievable without being able to eat enough without being sick. Some days I can't eat and have to make myself have nutrition drinks to get through my shifts at work etc. As at the moment its a combination of restricting and bulimia my weight yo yos rather than losing alot of weight, rationally I know actually consistently eating would probably make me lose weight but on a bad day its like the ed takes over my thoughts and makes the anxiety about food so bad I'm not allowed to eat it unless I'm sick and often I have days I don't eat.

 I'm having a break from dbt because although it could help me get the life worth living where I can manage challenges without going into crisis with self harm and feeling suicidal at the moment I'm in control of that mostly apart from some minor self harm and it's my eating disorder that is the barrier to moving forward. I''ve been told eating disorder services won't help me again as I didnt get better in the 10 sessions of therapy I got for a 20 year problem so my only option is to see an eating disorder dietitian I have found who apparently helps do an individual meal plan and support to manage the anxiety that is the barrier to just being able to follow it. 

Services are overstretched, too many people with lots of mental health problems are sadly being left to die, I have a brain that often wants me to in a body that seems to not want to give up, hopefully one day I will find the mental strength myself but it's virtually impossible to recover without a support network you can trust who understand you. I'm trying to motivate myself with choir, work, Warwick, fundraising and things to look forward to etc. it's just hard and some days are harder than others...