It often feels like I am spending my whole time thinking about food, figuring out how to get items, how to cope with challenging changes to my meal plan and worrying about running out of things.
TW: Anorexia, restraint, suicide, detention, benzodiazepine withdrawal
@outdoorperscrip’s #MadCovidDiaries 27.4.2020
I sit on my sofa and refresh the Tesco website for about the 50th time today. I’m trying to get a delivery slot for 3 weeks’ time. I have the next 2 weeks sorted out with hours and hours of similar constant computer refreshes and late night’s checking if any slots have become free. I’m very sleep deprived. The voice in my head is angry. It’s telling me I am being ridiculous. I should be grateful to have the next 2 weeks sorted out. It’s telling me I shouldn’t have booked them. I should have read the words on the website and gone to the shops myself. The guilt weighs on every part of me. What if the delivery people shout at me? What If my neighbours see the delivery and hate me? The reality is that I can’t drive. I can’t go into the shop on my own. I can’t allow my partner to do the shopping for us. The voice in my head tells me again that I’m being ridiculous. What is so hard about writing a list for my partner and allowing him to purchase the items? If my partner shops he cannot make decisions without me there when things are out of stock (which they frequently are). The decisions he makes could mean that I am unable to eat what he has purchased, which will result in me becoming physically unwell.
I am mentally ill. I have anorexia.
Rolling the clock backwards… from September to December I was detained under the Mental Health Act for treatment of my eating disorder. I have had previous hospital admissions, but this one was different. At times things didn’t go well (a rather large understatement, but I can’t face trying to explain it all), my view on what happened will always be different to the view the hospital held. I worked so hard at my recovery in hospital, but at times things went wrong and distress was caused. I’m autistic and I believe that this wasn’t always understood. My distress was medicated. I was restrained. My admission was terminated early, which cumulated in me trying to climb onto the roof of the building. I’d lost hope, I was still in the early days of restoring my weight and coming to terms with the change. I felt I was being discharged when still unwell and unable to cope, I didn’t want to continue to live with Anorexia. I was transferred to an Acute hospital. The Acute hospital felt like a weird dystopian nightmare, there was no free access to the outside, the nurses treated me like I was a criminal, yet the HCA’s showed me nothing but kindness. The Psychiatrist was downright cruel. I still can’t quite believe that period of time in my mind.
When I was discharged from the Acute hospital after ten days I was a mess. I’d become dependant on Benzodiazepines after 3 months of high doses. I was given terrible advice about coming off them, which led to 3 months protracted withdrawal. Thankfully early on someone stepped in and gave me advice about proper tapering – reducing the dose slowly over a much longer period of time that originally advised. Coming off them produced a long list of withdrawal effects each time I cut the dose. The withdrawal effects took about 5 days to kick in and would take me by surprise every time. I described the muscular pain as ‘tin man syndrome’ where my body was so stiff it was hard to move. I felt sick, dizzy, had very little sleep which mostly included night terrors and paralysis, I felt like insects were crawling on my skin, and in the early days I’d end up doubled up in pain crying on the floor.
The fear I felt during that time was all consuming. Somehow though I managed to pick myself up, I followed my meal plan, I applied for jobs and I started a college course. The course was a real turning point for me, the college tutor asked me what my personal goal was at the start of the course (to regain some self confidence/self belief). and she gave it her all in helping me to meet that goal, creating opportunities to increase my confidence which included helping her teach a lesson to the next level up of the course. My tutor did more for my recovery that any mental health professional has ever done. I also started to volunteer for a Walk for Health group which I’ve been walking with for a year and a half. The group are honestly the kindest people you’ll ever meet, they kept me going each week, gentle words of encouragement, asking me about nature and generally looking out for me. All the confidence boosting and constant challenging myself to do new and difficult things meant I somehow managed to get myself through interviews and get offered a job.
Then Corona virus happened, the carpet well and truly pulled from underneath my feet. My course and walking group stopped, I couldn’t see my Mum who I’d been seeing three times a week. I’d just come to the end of my protracted medication withdrawal, my mind was finally thinking more clearly and everything had changed. My job start date is on hold till later this year.
Managing my recovery had become more difficult when I was looking for work, I struggled with the rejections and controlled my sadness and anxiety by restricting my eating. The downfall had already begun and lock down pushed it further down the rabbit hole. I had begun working to turn the relapse around with a dietitian pre lockdown and these appointments are now via video chat. Each week I have to change and increase my meal plan.
This links in with why shopping is so hard. Each week I am having to adjust what I buy to take into account the changes to my meal plan. This becomes more complicated when items have been panic bought and are no longer in stock. People probably say, why not just pick something else? It’s not that easy if you have an eating disorder especially if the items are things like eggs or bananas where there are no similar products! Every social media post promoting the making of banana bread feels like it’s rubbing my face in it!
We are also shopping for my parents who are vulnerable. Trying to fit two families worth of shopping into 80 items for five people sounds like a lot, but not so easy if you have to buy 28 individuals bananas because multi packs aren’t in stock! People with eating disorders often get fixated on specific product types, such as a particular type of bread. For some, not being able to get the right bread could be the difference between being able to eat or not eat. For an outsider this must seem like utter madness, like someone is choosing to starve themselves, but it’s not that simple. Starvation or limiting food intake causes changes to the brain, it makes thinking more rigid, it’s a physiological difficulty as well as a mental health problem. People often end up trapped in the illness for this reason. You have to be nourished to think clearly enough to recover. One particular issue I had with bread was all of my bread order being replaced with half sized loaves. When I was really ill I was choosing the half sized bread so I could eat less. This was not a good thing for a recovering person to receive! Thankfully with support I was able to accept that I needed to eat four slices instead of two. I won’t describe the tears and how hard it was. Eating four instead of two meant that the bread ran out more quickly, which of course then presents another issue. It often feels like I am spending my whole time thinking about food, figuring out how to get items, how to cope with challenging changes to my meal plan and worrying about running out of things. It’s hard to plan exactly how much milk or bread you need in the week, but I know that if I run out it will mean I will skip things and when I make a change it’s hard to turn it around. I am also autistic which means I can be much more vulnerable to getting stuck in particular routines. I think being autistic is making the not knowing about delivery slots particularly difficult, pre Corona virus I had a fixed routine of where I went shopping once a week and found it much easier to visually choose what I needed.
I am fortunate in a way that when Corona Virus happened I wasn’t as unwell as I had previously been with Anorexia, the hospital admission from last year had meant I’d regained some weight,therefore my thinking is a bit more flexible. My experience in just about coping with moving forwards with recovery is mine alone, I want readers to realise that for many the current situation will be worsening their illness and making things intolerable. An online friend recently talked me through some of my worries described above, which helped me to feel more accepting of needing help. The niggling voice is still in the room, but it’s still for now.
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