Reaching the 20yr mark - any hope at the end of this looong tunnel?

[dairymilkmonster]

I developed anorexia age 15, now approaching 35 and while the illness is not what it was back then, it is still a total nightmare EVERY SINGLE DAY.
Age 15-25 I had numerous inpatient stays, daypatient treatment, several sets of CBT, advice from a dietician, we tried to have family therapy (useless, my parents consider 'just eat more' to be the solution) etc etc. It all helped to some extent, ie I am alive, I have a job, I have two children and a wonderful loving husband but I still have anorexia.
Currently, and for several years since having my kids, I've been at BMI 16, exercise for an hour daily (thankfully my job/the kids prevent me from doing more) and am very restrictive in my eating patterns. I don't lose weight - even on small food intake and with lots of cardio - which my husband just considers a blessing. However I have bouts of moderate depression, lack energy, find the kids hard to manage, feel guilty whenever I eat, avoid social occasions (the food, too tired), look a mess and am generally a rubbish mum/wife.
Problem is that the times I have gained weight to BMI 18-20 I have felt fat and disgusting. I've been at that weight for a couple of years max before losing it all again and been miserable. I coped okay with pregnancy as I knew breastfeeding would drop the weight off.
The local NHS eating disorder services won't see me because I am too stable (ie weight not critical and no longer purge) and they wrote back to my GP saying - 'she has had lots of treatment here already'. They may mean they can't offer anything different or new.
My GP - who is very sweet but can't really do anything for me - recommended looking for an experience private psychotherapist, and to try a therapy other than CBT. We can afford it, so I'm thinking about it.
Any words of advice from anyone out there?

[rebelrebel3]

Yes!!! Please do get a therapist and be prepared to get another one (and another) if it doesn't work first time, finding the right connection can be hard. But please do it and don't delay - you can get better (as i have) and if you dont the consequences will be awful, for you and for your kids. Dont ever tell yourself they will not ne affected - they will be,more and more so as they grow. Plus you owe it to yourself - there's a much nicer life you could be livi g i promise you.

[StewardsEnquiry]

You need a proper Cognitive Analytical Therapist experienced in EDs. Much better than CBT.

[dairymilkmonster]

THanks.
rebelrebel - what helped you get better?

[rebelrebel3]

Just through therapy really...i found the right person for me and worked through a lot of painful things from childhood and teens...understood how i got from a to b. Realised i was using the ED to manage (or actually avoid) virtually all strong feelings but particularly sadness and anxiety / fear. All tiose times when you're thinking about eating / not eating / being thin / not being thin enough / etc - this is a mask for thinking and feeling the real life stuff that would actually affect you if you let it. The ED cuts all that out and also keeps other people at arms length - never close - so you're protected, because ultimately the ED feels more important than anyone or anything.
For me getting better has meant facing up to the fact I'm pretty rubbish at relationships - i tend to put myself in the role of giver and find it hard to get what i need, then if anyone does give stuff back im terrified theyll get sick of me and walk away. When i had an ED i thought my relationships were ok as i was focusing on food!
Im not explaining this v well but bottom line i think there are 2 parallel worlds - ED world where everything you feel is about this one thing and the real world, where you get to experience your real thoughts and feelings. This won't be easy but it gives you the possibility of love and happiness which dont really exist in ED world.

[dairymilkmonster]

I've arranged an assessment with a potentially suitable ED specialist therapist - can do CAT or psychodynamic as well as CBT. Sounded nice on phone but I know how important it is to 'click' with the therapist. The person i saw as a teenager i didn't engage with due to denisl, the 2nd I didn't like so was hopeless but there was no option to swap as t was nhs. Last cbt therapist was fantastic and helped me get to this point.
Will see how it goes!

[Oceanwaves2018]

My daughter has anorexia & like you, since the age of 15. We are 6 years down the road & nowhere near anything like starting to recover CBT didn’t do a lot for her. I’m not surprised you have bouts of depression, lack energy & find it difficult parenting with a BMI of 16. My daughters BMI is 15.5 & she finds it difficult to function most days. Like yourself she has had many many hospital admissions which proved unsuccessful - gained weight through NG feeding, but, lost once home. It’s appalling that you are classed as “too stable” to receive help as with a BMI of 16 you most certainly aren’t, but, you don’t need me to tell you that. Have you ever thought of a specialist unit as an inpatient for intense treatment & applying to the NHS for out if region funding to do it??? - I know you have s job, children & husband etc & your situation may not permit it, but, we only gave one life. This is what is happening with my daughter, NHS eating disorder unit has stated they have offered everything they can & nothing has helped. I know it’s a huge step to take/consider when in your osition, but, just a thought to help conquer this bitch of an illness. Sending love, strength & positivity to help you fight your demons.

[dairymilkmonster]

Sorry for such a late response - been on holiday and husband and I went internet free for the fortnight!
Thanks for you support. I certainly would consider further intensive treatment (hospital/daypatient) if I relapsed further again, but not at present. Going out of area would probably be a good option.
I can't believe I started this thread back in January...since then I bit the bullet and started therapy. It's private (£80 a session...ouch), weekly 55mins with a psychotherapist who is a pscyhiatrist specialising in psychotherapy. I had assessments with 4 other people, but wanted someone who could offer more than CBT or straight psychodynamic therapy (could draw on diff therapies as needed) and was an ED specialist. I started mid April, and am committed to keeping going as long as needed. No major breakthoughs yet, but it has been a looong time so I can't expect instant success!
I do hope your daughter has better luck than me. I really think having something to get better for is important; many people I have met during treatment who completely recovered were at risk of losing something/someone important to them and it was. big motivator. I somehow have managed to battle through which has meant i never quite had the motivator. I would like to enjoy life more though, and have more energy. I am a doctor, which was my big goal and I have achieved, but I'm sure it would all be easier without he ED.
Here's hoping for easier times!

[Caribbeanyesplease]

Bmi of 17
I am able to exercise but often feel utterly shite at points of the day. Weak, brain fog etc.
Do you find this OP?

Trying to establish whether I feel pants because low weight or because if something else?

What do you usually eat in a day? I eat a lot, but it's all ridiculously healthy.

Sorry to hijack!

[AtleastitsnotMonday]

Another one joining the group here. I class myself as semi functioning anorexic. I.e on the surface I appear to cope, hold down busy full time job but still entrenched in thoughts and behaviours. I too have had this about 15years and feel resigned to this just being life.

[Melonsandberriew]

I’m curious too Caribbean

How do you guys feel on a day to day basis being v underweight

BMI just under 17. I feel pretty shite for most of the day. I can still run hard and fast in the morning, but as the day progresses I feel very “off”, kind of faint, distracted, flat.

Anyone else?

[AtleastitsnotMonday]

I don’t feel ill, or often get tired but don’t tend to miss out on anything through not feeling well enough. I think my body is just used to coping like this.
Only time I feel properly unwell is when I’m hypokalemic.

[Melonsandberriew]

Thank you

What would be your normal diet.

Mine is almost devoid of fat BUT I do eat a very decent quantity 3x a day

70g porridge, yoghurt and fruit for breakfast

Huge undressed salad and chicken breast or tuna steak for lunch with more fruit

Dinner is huge mound of steamed veg, followed by lots more fruit and Greek yoghurt

Sometimes I’ll have dried fruit/oats before bed

I recognise not ideal but seems pretty decent to me and doesn’t warrant this feeling

[AtleastitsnotMonday]

I don’t eat breakfast. Have a salad with either 1 slice of chicken or 1/3 tin tuna. Followed by a piece of fruit. I have a salt and vinegar rice cake about 3. In the evening I have similar some time with baked veg ( cauli, mushrooms etc) sprinkled in curry powder (sounds weird I know but tastes good). Usually some melon before bed, occasionally I have a rich tea biscuit. To be honest it’s as boring as hell!

[Melonsandberriew]

Any children?
Energy levels?
Very similar to me but more quantity my end, plus dairy in the yoghurts

I’m determined this lunch to have salmon for the day. Absolutely determined

Re your curry powder. I get it. I doise my veg in soy sauce and wasabi!

[Melonsandberriew]

Oh and I always always have breakfast. My most normal of the day!

Where your weight and height?
Do you want to change?
I’m desperate to

[Melonsandberriew]

Do you work out?
I do an hour a day. Oddly enough rarely struggle with energy then.

Sorry Spanish Inquisition. I’m trying to determine if way I feel is because of diet or something else

[AtleastitsnotMonday]

No worries!
No kids
Energy levels generally ok
My BMI is 12.5
Would love to change but scared
Don’t work out as such job v active though, swim once a week, yoga twice, sometime play a bit of badminton too.

[Melonsandberriew]

Oh goodness I don’t know what to say. That is a low BMI. What is your weight and height? I’m gobsmacked you don’t feel fatigued.

I had the salmon for lunch and felt inordinately proud of myself. And haven’t felt too bad this afternoon whereas usually sluggish.

How old are you?

I’m 37. Mine started about 18 years ago. It’s ebbed and flowed but since my divorce two years ago, I’ve gone downhill. For me, the motivation for recovery is that I can’t stand this off feeling, which is likely due to my low oestrogen, and I feel it impacts on my parenting as I just don’t feel enthusiastic for life, which the children pick up on. I’ve been prescribed an oestrogen patch. So hoping that will help.

Have you had a body bone scan? My doc prescribed me one as those v underweight at risk of osteoporosis. Apparently my bones are thinner than normal but not osteoporotic.

[AtleastitsnotMonday]

Yes I know it’s low, but I’ve been worse so I kid myself this is ok. I’m 32 33kg 164 cm.
I’ve had a few dexa scans and I have some osteopenia but not osteoporosis and take calcium with vit D daily.
Well do for getting through the salmon, I know how anything different regardless of what it is can pose a real challenge.