I want to share a bit of our story with all of you who are at the beginning. I know how dark your days may feel and you are doing a good job. You are caring for your child during extraordinary circumstances, ED and COVID.
My D was diagnosed just over three years ago and it was just awful. I could not see a past my grief at all. I had overwhelming anxiety and PTSD. I clung to the forum for help and support. I read the forum with tears streaming down my face. I remember my first post sitting in my rocking chair, at about 3 pm that day and I hit "post" and sent my plea for help and understanding around the world and I could not believe that a real person actually replied to me!!! My heart was so full of gratitude so I bawled some more.
The great stories of hope, honestly did not help me. I felt more upset that I was not there. I was envious, to be honest. I did not believe that others really had been in my place. I felt as if no one had it as hard as I did. Ha! I learned quickly that it was and is hard for all of us. No one's story is harder or better/ easier than anyone else's. I did not wish to be an ED hero. I just wanted my d to get better. It was that simple.
As I learned quickly how to "see" and understand this illness in all its topsy turvy ugliness, I began to know that most did get it. Sometimes there was this weird sense that many of you were actually in my home. The shame and worry and fear I had, people here really did get it. That was when I felt more empowered and shared more so that I learned more and could get ahead a bit. I was fearful of the stigma and having fingers pointed at me. I already felt guilty that I let ED thrive to a degree.
What I came to realize is, not that we are just in this together, is that there are a lot of similarities in our circumstances as well as differences and I learned that when I re- read some advice given to me at different times in the journey, I could apply it differently and could see it in a new light and it was always helpful, always!! I learned that somethings did not work here, and that was ok and that I learned what the ED in my home required was different to another's experience. There is no right answer with ED. Nor is there a wrong answer with ED. My D has AN and so of course that is my experience and my point of reference today.
A bit of our story: D was almost 12 at DX. Admitted to IP one week after DX. In IP for 3.5 weeks. WR set at 40% for age. Took us 6 months to get there and found that another 6-7 kg or 50% plus helped and of course time. Periods came at 8 months into it and about 2 months after the first WR (ie 40%). She started Olanzapine for two weeks - did not work for her. On sertraline and did calm her a bit.
She stood all the time and had OCD traits as many of our kids do. We had to tackle fear foods from day one, as everything was scary to her. D responds well to authority and so I learned to tell the team in advance what I needed from them that week ( time for smoothies so the team told her it was time for smoothies) she then would have it- grudgingly but she did it. She was compliant for the team and hard on me. We had violence too. I think you need to know that can happen. I did not know that and felt so shameful that I did not ask the team for help. My H did not get it and so I had to teach him to follow my lead. That was quite difficult as I was grieving and taking care of d and having to teach him as well was an extra burden.
D had two older sibs a sister 7 years older than her and a brother 4 years older. I know they suffered. I did not pay enough attention to their needs at that time. I hope I am doing that now though. I did not have enough of me at that time for even me, sadly enough. I don't know how I could have done it differently. I could not practice self care. I was consumed by ED. 24/7.
When within yourself you find the road, the right road will open. (Dejan Stojanovic)
I added cream, and oils to everything. She gained slowly sometimes and fast other times. She did fight the food, but ate, as she did not wish to disappoint her doctor. Weird I know. When she threw food, we replated it. We had to be silent and not look at her when she ate. I sometimes had to leave the table as her anger at food was directed at me. H sat with her quietly to ensure she ate it all. Those were hard days. Not gonna lie, I did not think they would end.
How did we get her to sit? This is how https://www.aroundthedinnertable.org/post/trying-to-get-her-to-sit-8528651?pid=1296348023
When did we see her brain get better? About 9 months into it and about 3 months after the first WR and remember it was the time we as parents put in to re teach her about food and manage her fears every single day!
At one yr she was so much better. Then next year there were blips in the road. She did start ditching food at school and tossing her drinks, she lost weight and I knew what was going on and could not prove it until I caught her dumping her drinks last June or so. This is a reminder that you have to keep circling back when you see wt loss and behaviours pop up. I know it is hard and you need a break. Ensuring you are ready for the ups and downs, makes you more resilient.
She is 15 today! She came bounding down the stairs a big happy grin on her face!! She asked for eggs and toast for breakfast.
She wants pizza soup for supper. This is a soup that portended her ED. We had gone to a cooking class one month prior to her diagnosis. (yes I know in retrospect that was ED 100%). She did not want the turkey sausage in it she did not want the cheese in it. She did not want the cheese sandwich with it!!
Now that is her favourite meal. Cheese in it and thick slices of bread slathered in butter! She is happy. She has a life outside of ED. I am so grateful to be able to witness her life as her mom and to be able to help her when and if she needs.
I wanted to share this so that you know, it is a long road and I don't know if she is fully recovered to be honest. (crossing fingers here). I think there is still work to be done as she grows and matures. I just know things are better and that I am optimistic for her future. That she will continue to not be scared of food and that when there are blips ( I am sure there will be) that she and I can work on it together.
I post this here today so that you may find something that helps you.
Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)