Coping with the long, long wait for treatment

[openmindmh]

Hi there

I wondered if anybody else was also on a long waiting for ED treatment and was struggling to cope? I have been waiting for treatment for my eating disorder for 14 months now and I really feel like I have reached the end of my tether, and things have started to go downhill for me.

When I was assessed (after a six month wait) my BMI was *tw* 16.6 and I was restricting somewhat, but not too badly, and over-exercising, plus sometimes taking diet pills. But I was largely stable and felt I could cope with symptoms. They have constantly been lying to me telling me that I will be seen the following month since August 18, but then that comes, I am never seen and I really feel like I have to get worse for them to take any notice of me whatsoever. I have been in touch with the clinical services director at the service because there have been lots of other problems with the way they have treated me.

Anyway, I am now at the point where I am restricting my intake more, exercising more and taking diet pills everyday, and have lost a little weight (it is much harder to lose weight when you are already underweight I am finding!). I just feel completely despondent, like I have no hope of getting better as I have had this problem since I was 14 and now I am 27. To add to that, some of the physical effects of restricting are making it hard for me to work full time including low energy, dizzy spells/seeing stars, constant hunger and irritability but my job is my motivation for getting better and I can't afford to drop my hours.

Does anybody have any good coping tips for dealing with the long, long wait for treatment? There is still no indication of when I would be seen: it could be two weeks or two years! I do have monthly review appointments with the service after making a complaint about the way they have handled my case. I need some practical tips for eating a bit better again, managing the hunger and physical issues and dealing with the despondency.

Thank you

[ac79]

It's tough, particularly with the under-funding of services and the numbers game that is eating disorders care.

I understand that work is important to you but it might be an idea to take a couple of weeks off, try and drop your hours, or move to flexible working arrangements if you can.

Look for any support groups in your area too. I went to one which didn't halt my decline but certainly helped to moderate it for a while.

Do you have a friend or relative who could help you draw up a meal/exercise plan to stick to? There are lots of great books out there that could help to support the planning beateatingdisorders.org.uk/...

I always found that forcing myself to keep a diary, even if I just managed a few lines a night, helped to focus my mind but that's not for everyone.

Try going back to your GP and underscoring the gravity of the situation. The more people you can get on your side, the better. You could also write a letter of complaint to the CCG...

I hope this helps? Good luck

A little word about me:

Onset: Age 14. Not a lot of help. Became bulimic.

Age 18 -23 - nightmare times but ok weight. Lots of Prozac and other drugs thrown at me.

Age 24 - found the therapist I could work with

Age 25 - first hospitalisation (7 months) went in bulimic came out anorexic.

Age 27 - second hospitalisation (8 months)

Age 28 - third hospitalisation (mainly due to weight lost through contracting TB) (6 weeks)

Age 28 - 29 - day care, three times a week.

Age 31 - discharged from therapy. Six monthly check ups at GP

Age 38 (now): Fine! Married, working and happy XX

[crazycrossstitcher]

Been just where you are - took me 8 months to see dietician - but I am still not receiving any counselling support 12 months later - so finding it really hard to put dietary advice into practice. Try contacting ABC - they have a support line and can offer befriending - so that might be an interim - really do explain the situation and at least talk things out with them. Go back to your GP again - and kick up a fuss - I found venting steam whilst not getting me far made me feel better - and at least the service got a kick from the GP. Coping alone is really hard - but I found writing a diet plan helped me - and whenever I felt like restricting I looked at my plan and that's what went on my plate. Diet pills - would try to cut down on these - not good for long-term health and not the answer.

[Hildegard88]

I don’t know if this would help but there is a website you could look at.

cci.health.wa.gov.au

The site has a lot of self-help material that is really good. There are workbooks and information sheets. It might help you to start treatment on your own whilst waiting for professional help.

[openmindmh]

Thank you all so much for your help and advice, I appreciated even just having people to talk to. And yes those self-help sheets look great.

I do have some great news though and I start treatment next week - I found out yesterday. But I will most definitely be saving all your suggestions because they were really helpful anyway.

I will let you know how I get on. x

[sliverofsilver]

Hi openmindmh,

Yes, that’s me. Exactly you.

I know how hard it is when they keep lying to you, saying you’ll get help soon, but then you don’t.

Work is bound to be important to you, and that’s normal, but it could do you a great deal of benefit to take some time off or see if more flexible working hours can be arranged.

Is there a friend or relative who you can speak to about this? They can help you get through this long wait, and you can perhaps draw up some sort of meal plan or discuss what you might be alright with eating. It could be salad with a bit of chicken for lunch, or if you’re feeling brave, maybe something more substantial. Just take things one step at a time, even if it’s one minuscule step. You could start from toast, then buttered toast, then sandwiches, or from a small salad, to a bigger salad, to a salad with chicken or some protein in. You could throw some croutons in there if you feel up to it.

See if there are any support groups or communities in your area. It can help to be able to talk face-to-face with people who really get you. I was in such a thing (online) and it was one of the things that brought joy to my life- in fact, it saved it.

There are also a lot of good websites that can help with eating disorders, such as Beat, and of course, we’re always here for you.

Best wishes,

-sliverofsilver

[art62grammie]

Don't wait any longer for help. It seems you are getting worse. I have had Anorexia 40 plus years. I checked myself into treatment just six years come Jan. 2019. I was never put into a hospital. I went to my local mental health facility. I asked for help. I saw doctors and therapist eight times a month for that first year. I listened to all they told me. I ate like a horse. I am recovered to my fullest now. Please get help soon. It will take you, the illness if you keep waiting.