Eating disorder

Hi Linda,

I have Schizophrenia, with two sisters who are Schizophrenic. (one died a long time ago)

I had bulimia when i was 14 and again at age 30 when i spent 3 months in hospital.

I’ve been slim or overweight - currently obese but stable - from AP’s that cause weight gain. perhaps you can try Zyprexa if he is compliant enough. The stuff has a warning on it that it can cause diabetes due to eating too much… i was Always hungry on it when i took it in my 20’s

when in hospital age 30 i wanted to be slim and to be a yoga teacher. my portions were tiny and i had the idea to eat stuff like jelly babies and a single beer, (on leave) and making myself sick 15 times in a row, just this was for weight loss… it did not last long… somehow the medication got into my system and stopped it

that was - i think pure bulimia

i was in hospital a year later for 288 days and for quite a long time thought that i had cancer and that my stomach had split off from my oesophagus. If I ate nuts i believed they would end up between my ribs. I had no real option but not to eat as it was going into some cavity in my body … this was not that long lived but i was quite a low weight again. Then Bulimia kicked off again and I threw all meds they could give me up - so that i could get rid of the food
i thought i was being compliant by waiting 45 mins after taking meds - didn’t know it takes a lot longer to get into the system

I was eventuallygiven injectables and they saved my life.

other times in the community i could not cook for myself (just inability to take care of myself) i couldn’t manage making toast!
I would eat a working man’s lunch (I’m F) by having a coke, a packet of crisps and a tuna sandwich.
that was literally all i was eating.

I’ve seen my youngest sister (late onset) become anorexic with her delusions (anorexic first in her teens)
I think it was mainly because she is non compliant and will only eat vegan food. She is away at the moment trying to live independently again. She now has 2 months off alcohol and cigarettes and was gaining slowly when she left for London. I think she could not keep anything down. She knew she was underweight and actually saw it and purposefully gained.

I’m sorry to hear about your son.
I hope this is some insight.

on a note - My sisters neither of them had a job since diagnosis.
I have worked sporadically - part time (4 - 16hrs) and once when i was off meds and vegan yoga queen a 35 h a week job and then lost my mind - see above - low stress jobs like farm hand, charity shop (volunteering), receptionist (volunteering) or i studied quite a bit on and off (i frequently became unwell because of a stress with the job and had to go to hospital for a while on 2 other occasions
Things like this along the way (the work) have given me a more fulfilling life. It is difficult with a very strong work ethic not to.

I had it knocked out of me but at the same time i met my now husband. I think without the experiences i would not have achieved a healthy marriage, but taking care of the house and food is enough for me.

I’ve found therapy very useful.

getting out into the world is something i have always strived for … other things have tried are running (mum coach) and theatre for the substance misuse and mentally unwell and people otherwise socially isolated. This led me to writing and i almost killed myself trying to put on my own play - but had prior successes with sketches…

I’ve not been unwell for more than a few hours at a time for over 13 years
30 - 33ish is a time when a lot of schizophrenics become stable

This has been the case for me.

I’m not much good really at encouraging words but i hope that i haven’t offended and have helped and haven’t gone on too long!

Working (ie full time studies for a year or challenging jobs) can definitely put people in hospital.
I gave up.
Then with help with filling out a form I got disability money i could not have got without this help to fill it out and the willingness to avoid stress

Firstly thank you for taking your time to write to me , you have helped me in many ways with your info so thank you for that and i’m happy your doing well . My son put on weight at first from the AP meds then, less than a year a go started to lose weight believing most foods will shrink his muscles or bad for his organs … he has told me a few times that he has cancer . He was then trying to ween off his Abilify to Zyprexa but after a few days he had terrible migraines and doctors order to stop the Zyprexa and continue Abilify . The psychiatrist said its either a delusion or BBD but it sounds like a delusion , he wanted to give my son an SSRI if it was BBD it would help but my son refused . Thank you for letting me know and understand about working as i feel guilty pushing him to go and try to work (food delivery)i do this to get him out the house and feel like he had a productive day , should i stop nagging him about work ? do you think its too stressful for him ? he is so isolated and doesnt live with me , always in his room playing on his xbox and stressing about what he can or can’t eat . Do you mind me asking why you thought you had cancer ? voices ? delusions ? i don’t understand why my son would say that and believe it . He was diagnosed with schizophrenia at the age of 19 and a year ago schizoaffective disorder , he will be 22 in Jan 2020 . im so relieved things get better when you get older i did read that in a book but more relieved to hear that from you so thank you again.

Hi Linda
I’m glad that i had the chance to help a tiny bit.
I always yo yo’d with my weight
i have had the delusion that i’m losing weight even when i’m gaining. ( i fear - even when fairly stable - that i’m rapidly losing weight due to cancer - after only 2 days on a diet i then binge sometimes … i can even be gaining and have this fear.)
Cancer is a big one for schizophrenics for some reason and its a big fear for me for some reason. I think because i used to smoke heavily. I believed there was a spirit in each cigarette, going into my lungs and i had a familiar spirit which was a dog, who would sit on my chest at night and get rid of them. I did give up i haven’t smoked in 13 yrs… but i smoked a hell of a lot to get to that point .

I believe my experience of early years of having schizophrenia are that the actual shock and severity of the unbelievable intensity of delusions (me anyway) genuinely just drive a person into a prolonged stupor of reading (it would be internet now) - so i think bear with him a while and gently suggest he comes up with what he would like to do maybe?

Don’t feel guilty. Work ethic seems to be a pretty huge thing of what makes us human and well… but i am totally addicted to my screens now (i’m 45)
it’s a real waste of time a lot of the time. but it is a long time 24 hrs with no job or kids! It’s just that it’s addictive and that would prevent a lot of life being lived for your son and for me.

I thought i heard someone go ‘internal fire’ to me and i believed this was because i was burning feverish with late stage cancer and that lowering my body temperature back to normal would help me live a bit longer.
I had winter cold showers 3 x a day for long enough to sometimes give me moderate hypothermia.
I feared i had cancerous lymph i needed to drain from my face with face massage - to be reconnected with a healthy system and stop the cancer from growing out of the pores in my nose.

Don’t think of it as nagging - embrace the positive

I mean - God - sorry it’s pretty horrific

It really can be anything - a delusion. The more i read on people’s experiences the closer i am to some and the further i am to others is clear. It’s a mixed bag.

I also had a long term schizophrenic sub illness, called psychogenic polydipsia, which can manifest after many years
i would drink anything to excess especially water… 4 cups of coffee-tea or mint sauce or pot noodle liquid all because of the cavity inside me.

Encourage him to do smaller things first maybe
at times of average wellness - I find 2 - 4 hrs volunteering a week enough (and a ton of AA meetings)

at times i have had a 21 hour week on a farm and done really well

getting my hands into soil has been especially helpful… always feel good doing this but no motivation to do my own garden…

Exercise is also an alternative to work
mum would encourage me when i didn’t want to go - she would drive me and wait in the car while i ran… i was capable of running 10 mileers - half marathon distance on a weekend long run plus shorter runs in the week …

That and meeting my husband was enough

there are people on the other forum who do work with a lot of stability.
almost always not a full time job and juggling a lot of other stuff

i am really just a housewife
I shop cook and clean cycle a bit - and visit my mum whom i moved 1hr away from

living the Whole Big Dream is probably impossible but it is also possible to be happy with a bit less.

sorry still three here i tried to set up an account for my mum if possible on the same computer - having difficulties flagging so a mod can see if i can change my name back to three please?

Hi, sorry for delayed reply. My son is on Clozapine. But it was another AP that broke the cycle.

I think unusual ideas about foods can be a part of the disorder. Also, even tho my son has poor insight, I think he sometimes is searching for the “cure” in food.

HEY !!! Thank you for giving me so much insight , you sound like you got your life together and im so happy to hear the positive . My son won’t exercise due to his delusions that it is not good for him but your right and i need to focus on the positive and help him through this . I know you said schiz gets better when you get older , does that mean No Meds or is meds still needed ? i guess everyone is individual . Thanks again and take care : )

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Hey Vallpen , Thanks for your reply ,do you remember the other meds your son took that broke the cycle ?

There are times when a schizophrenic diagnosis is given in first episode psychosis

this idea takes a lot of people a long time to accept if they are not that lucky

Overcoming Schizophrenia used to be my goal

win over it - prove i can do well as a human being with skills, talents, fun etc.
prove i can achieve high goals and just overall beat it, be exceptional.

Sorry i think this first episode of psychosis in remission with meds and that is all that happens does happen in 1/3 of cases.

i have never seen it - probably because they don’t come back and become truck drivers and waiters

it is scary to think that people Will die if we all wanted this enough to risk going med free
I did when i thought i was a super clean vegan yoga nut i thought this goes away at 30 so i will try it.

it is a fact that those who are not one episode only will need medication for life.

i would always trust professional psychiatrists with this decision, if they say come off meds then try it, it has probably been long enough and cured enough in that case

NEVER come off meds without full clearance from psychiatrists

the doctors know it is poison and have said to my face that they would not take it - (unless they really really needed it seemed to be the small print)

that is how much we need it - enough to become obese, free from sex drive, or diabetic, or with parkinsonism and worse.

This is how badly the doctors know we need it.
you will probably at some point hear them say that it is a choice between the meds and some side effects…

(and a lower quality of life than the general populous)
(they don’t say that bit)
and that it is about positives and negatives and positive results outweighing how much actual suffering happens with them.

I do not mean to scare you but even if you agree to this line of thinking you might then want to find the most side effect free medication … but that is always a huge risk and for me has me as an inpatient in a psychiatric ward

every full blown psychosis has a kind of cognitive decline associated - drop in IQ or reasoning and understanding things…
I found every single psychosis, caused often by fighting schizophrenia, has great risk to health and life
i’ve absconded from hospital barefoot, been on my way to india, been rampantly sexual with strangers., bought a caravan to live in, gone driving around thinking i had an axe murderer following me. it is unlimited the danger is unlimited

I think i have had a pretty typical course of illness considering the times i came off or switched meds

cutting down your son to this - might seem the opposite of your instincts and emotions and care and love for him. I am so sorry… i think it is huge the loss of expectations for parents eand very very understandablyę.

i was so much worse age 29 - 32 than i thought possible

the recovery they are all talking about, I think, is a medicated one

I understand and thank you for sharing , my son just came by and i had so much food to offer him but he said i can’t eat any of it and than asked me to make him a tuna salad which i did , then he said i will eat the chicken and salad and take the tuna home , i was thrilled ! he then when out to my garden and this is not the first time and asked me to be careful and not go out of the garden as i have spiders there that can kill you and he came back in the house very quickly , googled deadly spiders and said SEE MUM and i said, well they look similar but i don’t think thats what i have in my garden and he got angry and irritable and said WHAT DON’T YOU UNDERSTAND THEY CAN KILL YOU . I said ok i will get someone to spray them . He said love you mum and left . My son had one break 2 1/2 yrs ago and im hoping it will stay this way !

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Yes, I have been going to NAMI off and on since I did the 12 week family to family course. Tampa Bay has several NAMI groups, so I am lucky that way. I have been a paid member of NAMI for 2 years now. It is a great support group even if they don’t have all of the answers. I guess no one really has all of the answers for this dread disease.

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If I remember correctly, he was put on Risperadol at that point.

My son also sometimes reacts to things in that same extreme manner. I have learned in most case to respond in a soothing way, without contradiction. It can be hard tho!

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My son (25 yrs old) hasn’t been able to work at all. He drinks fluids like he’s dehydrated. The Dr said that’s the meds. He’ll eat all the time, then he doesn’t want to eat. He’ll stand in front of the refrigerator not being able to decide what he wants. It makes my husband so mad… I try to tell him to think about what he wants before he goes in the kitchen. It’s like taking care of a toddler sometimes. He can’t throw garbage away, wash dishes, wash clothes, clean his room and he barely is able to go down the driveway to get the mail. I’m thankful he is not violent. We go to the Dr every month so it helps to get a professionals opinion.

Hi , Thank you for sharing , it really helps me try and understand my son , does you son have insight ? my son does not but is med compliant and does see his psychiatrist every month but refuses therapy . There are no words to describe how hard this disease is … hang in there x