Friday 28 June 2019

"You don't have to be invisible to disappear."

In the months since I last posted, my support team has basically tripled in size.

For a long time, it’s been my GP, dietitian, and psychologist. Now, since my NDIS plan has come into effect, I also have two support workers, a support coordinator, a drug & alcohol counselor, and an occupational therapist.

The only day that I don’t have any appointments is Sunday. I see one support worker Wednesdays, Fridays, and Saturday. The second one, who I only met a couple of weeks ago, I see Mondays and Thursdays. They’re there to mostly have a chat, help out with issues that might be bothering me, and day-to-day things. I see my GP and dietitian every other Tuesday, and my psychologist on alternate weeks. I see the drug & alcohol counselor every few weeks, to try to come up with coping mechanisms to cut back on drinking. My support coordinator basically runs things, but I don’t see him much, and the occupational therapist is every month or two (basically to set goals and create more routine in my days).

The organization my support team are from run groups during the week. I’m supposed to try to get to them once or twice a month, but I haven’t yet (when I do, it’ll probably be the exercise oriented ones). They also do BBQs each Saturday, which I try to get to every 4-6 weeks. A few of the people there I already know pretty well from when I was living at the SRS, so that makes it easier to be around so many people.

I’m still too nervous to eat at the BBQ, between eating in front of others and whipping out my scales like a weirdo, but my Support Worker buys me a coffee on the way. Since I’ve always been so isolated, I’ve never really had to deal with people pressuring me to eat. My family would ask if I’d like to try what they were cooking, and obviously wanted me to eat, but accept it when I declined. At the BBQ, even when none of them know explicitly about the ED, at least half a dozen people will ask “have you had something to eat?”, “aren’t you having lunch?”, “are you sure you don’t want something?” Even if I was hungry and the food smells good, I’d rather wait until I get home and cook a low-fat sausage in a dry pan and eat it in wholemeal, instead of a fatty budget sausage cooked in oil and put in white bread.

None of it’s helping much at the moment, but it’s nice to have the extra support and know that, most days, there’ll be someone around if I need to talk.


A few weeks ago, I slammed headfirst into a massive ED trigger. I won’t go into detail, because I don’t want to trigger anyone else with it. In the space of a few days, I made after hours crisis calls to my support worker, dietitian, The Butterfly Foundation (which I could unfortunately not get through to), Lifeline, and an emergency GP appointment. Those who know me, know that it takes a lot for me to actually pick up the phone, or to go and talk to a doctor I’ve never met before.

I’ve had to be more cautious with food, with only the safest of safe foods on the menu to avoid another breakdown. I’m stocked up on fruits (currently apples, mandarins, kiwis, strawberries, watermelon and cantaloupe), yoghurt, crispbread, multigrain bread, and boiled eggs. If I want a main meal, I’ve got veggie soups and stews in the freezer, and I’ve always got things to make baked potatoes around (usually a little low-fat cheddar, garlic, and 97% fat-free shortcut bacon).

One of my favorites is a light version of potato latke - a medium low carb potato, shredded and mixed with No Egg egg replacer, and cooked in a couple of teaspoons of butter. Even though I use a little butter, it still works out to under 200 cal. I’m also partial to chicken cooked in Mexican seasoning, to have with salad in either a wrap or a couple of crunchy taco shells. And with winter hitting hard, hot chocolates (45 cal) are flowing in abundance. It’s not 100% full proof. Especially if I’m drinking, my food choices vary (not so much by calories, but different options that aren’t necessarily as safe).

On the plus side, I’m also drinking less, even though it’s mostly because of the calories. Last year, I consumed a total of 136,700 calories in alcohol alone. That translates to 17.75kg (39 lbs) extra on the scale that I could’ve lost if I didn’t drink.

My dietitian is concerned that I’ve barely been getting any protein. I’ve been averaging 20g a day, and she wants me to get up to at least 40g. I’ve been trying to add in things like more yoghurt, boiled eggs, and nibbling on cashews instead of crispbread, but I still struggle to even hit 30g. Since the Big Trigger, it’s back down to barely 20g.

My weight’s slowly been dropping since cutting down on drinking in the past year, although it’s been stagnant because I’ve been drinking more again in the last three months, mostly due to a lot of traumaversaries at this time of year. Whether I’m drinking or not, my food calories average around 600, but alcohol can easily add an extra 1,000 in a day.


Mum has since decided to move back to Geelong, after spending months looking around the state to figure out where she wants to go. Our relationship has definitely improved in the past 6 months, but it’s not without effort. We’ve started going for walks, to get me out of the house and to help with her health issues. About a month ago, we did the walking track at the beach (unfortunately I did not take photos). Then last week, we did the river walk (pictures below). I’m still not getting out much - the only other outings this year have been two birthday dinners - but hopefully between these walks, the BBQ, and trying to start some of the groups, that might improve.


I’m also going to be looking at a couple of places this week, for the first time since the house was sold in August. I’d been looking a lot before that, but since Billy passed, I lost all motivation. Even though it’s never been an overly pleasant place, the refuge has become even more stressful and depressing in recent months, and I need to get out of here, especially after being here since October. So wish me luck!


And I’m sorry I’ve been terrible at answering comments and emails. When I get them, I tell myself I’ll post an update the next day, but can’t find the energy to get out of bed and sit at my laptop. I know I say it every time, but I really will try to update more often.







xxBella

6 comments:

  1. So happy to hear that things are better with your mom. I hope you are able to find a place really soon. I was wondering where you had disappeared to.....

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  2. I read this a while ago but was locked out of my account and couldn't comment! Anyway, just want you to know I'm so glad to get an update, an I'm glad you're still living and that you have a bit of extra support to help when things get very heavy. Hope to get another update when you're feeling up to writing again, until then, you're always in my thoughts! Love and hugs! xx

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  3. OMG LOOK AT THAT BIRB

    It sounds like you have a pretty solid support system now, which I'd say is definitely an improvement. I hope things are getting better. <3

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  4. Support is the key. It can make you forget just for a moment what keeps us stumbling.

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  5. Thinking about you Bella and hoping you are hanging on! xo

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  6. I keep checking back to see if you have updated. I am sending you positive vibes!

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