Sick and Tired

I needed a break from healthcare appointments. I cancelled all of my appointments. I was just so tired of talking about my health, my feelings, my thoughts.

The break lasted about one and half weeks. I got a letter in the mail form my optometrist. A reminder for my annual check up. No biggie. I made the appointment for the following day just to get it over with.

Then it turned to shit. The appointment wasn’t actually for a regular eye test. It was for new photos of my badly bulging optic nerves, and a peripheral vision test to check for vision loss.

This isn’t new to me. A couple of years ago they discovered the problem with my optic nerves. It was thoroughly investigated, and specialists eventually concluded that I had pseudopapilledema (sue-doe-pap-ill-ed-eema). They said, due to lack of symptoms, that it was nothing to be concerned about, but to get my eyes tested annually.

Jump forward to now. Two years after that diagnosis. My optic nerves are bulging more than they ever have. I’m to follow up with my GP who can do referrals for relevant tests, scans, and outpatient referrals.

I dread this. I suspect I know how this goes.

I see my lovely GP who has a little panic. Then it goes one of two ways. The first way she keeps her cool, and sends me off for any relevant blood tests or scans, and an outpatient referral to a specialist. The second way she completely panics, and sends me straight to the Eye & Ear hospital where I spend the rest of the day in their emergency department.

When I eventually see a specialist (whether inpatient or outpatient) they’re likely to explore the possibility of Idiopathic Intracranial Hypertension. Basically, increased pressure in my brain that pushes the optic nerve forward into my eye. That was the potential a couple of years ago, but they ruled it out due to lack of symptoms.

If I see a specialist about the pseudopapilledema they’re likely to tell me that I need to lose weight. I know I do. I’m 40kg above my healthy BMI. Yes, I know BMI isn’t a particularly accurate way to judge health, but it’s what the majority of doctors rely on. If it’s IIH, even if it’s not, they’re likely to recommend weight loss.

That’s fine. I understand how weight loss would help this, as well as all my other chronic conditions. It’s just that I also have an eating disorder, and every single weight loss attempt has ended in a severe relapse.

I’ve only just gotten back to eating a bit more, and a bit more regularly. Now though? Gone. Obliterated. No food for me because I’m causing, or worsening, my health issues, and it’s all my fault. That’s where my head has gone.

So weight loss to improve my health? Necessary, yes. Possible? I don’t now how. Physical health issues mean I can’t do anything even resembling exercise. Throw in all the mental health issues, especially the eating disorder, and I don’t know how I can lose weight, remain sane, and maintain the health I do have at the moment.

I’m sick and tired of being so sick and tired.

Understanding, Compassion, and Respect.

We’ve decided that 2016 is going to be the year that we only include people in our life that treat us with understanding, compassion, and respect. People that can’t or won’t do this, will not have a place in our life.

During our last hospital admission (over Christmas 2015) we spent quite a bit of time contemplating what life would be like if we believed we deserved understanding, compassion, and respect.

What would it look like?

We’d take care of the body. We’d meet the body’s need for food and fluids. We’d plan for, and pace ourselves with all activities to help better manage our ME/CFS. We’d use more helpful coping strategies in order to avoid self-harm because we’d believe that we don’t deserve more pain and suffering.

We still struggle to believe and accept that we do deserve understanding, compassion, and respect. We go around in circles arguing about our worth, evidence for and against it, and usually end with overwhelming self-hatred.

Asking ourselves what we’d do if we believed that we deserve understanding, compassion, and respect bypasses that unhelpful circuit. We can ask that question of ourselves without having to believe it.

To make it a little simpler to understand let me tell you about a situation I found myself in recently. I was struggling with the eating disorder (ED) and was feeling anxious, upset, and desperately wanting to avoid emotions, thoughts, and my next meal.

I realised I had a choice. I could side with the self-hatred, shame, and more self-hatred. I could skip the meal and dive further into the ED. Safe, comfortable, familiar, but a cruel, and torturous headspace.

Alternatively I could pause and ask myself a question. ‘What would you do if you believed you deserve compassion, understanding, and respect?‘ I’d eat that meal. I’d eat it because I deserve food and nourishment. I’d eat because that’s how I care for my body. I’d eat because it allows me to think clearly. I’d eat because it allows me to be a good friend.

Comparing the two possible outcomes was interesting. I could plunge further into unhelpful behaviours and self-hatred, or try something quite different and end up feeling more okay about myself.

Being able to try the alternative behaviours whilst bypassing the ‘we’re bad, horrible, undeserving’ argument has been incredibly helpful. It’s helping us to make better choices as well as very slowly beginning to think better of ourselves. Maybe one day we’ll be able to believe it 100%.

 

The Eating Disorder Voice

If you have, or have had, an Eating Disorder (ED) you’ll be familiar with this ‘voice’. That part of you that screams internally at you to binge, purge, starve, exercise, punish yourself.

Very early on in therapy I was taught to separate the ED voice from myself, to name it, and to fight it. I filled journal after journal with a written war on the ED.

You don’t deserve to eat. You don’t need food. Skip that meal. No one will know if you skip it. You’ll feel so much better if you skip it. If you eat it you’ll have to make up for it later. You’ll have to be punished.

Everyone deserves to eat. I’m not different to any other person that deserves to eat. I need to eat just like every other person on the planet. If I skip the meal I’ll feel guilty, and will confess it to [therapist] anyway. I won’t feel better if I skip  it. I’ll begin to feel physically unwell. I don’t have to make up for eating it. I need this meal. No one deserves or needs punishment for eating, me included. Eating is necessary for life.

That kind of journalling helped me fight the ED and move towards recovery.

For the family, friends, and loved ones of someone with an ED it can be very hard to know what’s going on inside for the sufferer. The ED silences me. I sit and watch quietly, or avoid people all together. There’s a very loud argument going on in my head.

Imagine having a conversation with your loved one with an ED. You’re standing facing each other and chatting about what you did over the weekend. Your loved one is quiet, withdrawn, and responding with single words or short sentences.

What you can’t see is the ED voice. Imagine a person standing directly behind your loved one. They’re shouting responses at your loved one.

You: What did you get up to over the weekend? Did you see that new movie?

Loved One: Oh, no-

ED: Nothing! See, you did nothing! You’re useless and boring and everyone hates you.

You: Huh?

Loved One: Oh, I didn’t do much.

ED: See! You’re hopeless and pathetic. If you lost weight it’d be better. People would like you. You’re useless, hopeless, and pathetic! Everyone hates you!

Every single time I interact with someone this is what happens. I’m trying to pay attention to the conversation with a friend, but the ED voice is louder, and more persistent. It’s hard to focus on the conversation. Every social interaction ends with me feeling defeated, trapped, and hopeless.

If you can imagine a mean, cruel, vindictive person standing behind your loved one with an ED yelling at, and taunting them you’ll have some idea what it’s like to live with an ED.

And Now They Know

I’ve been quiet again. Things were going really well after my last hospital admission back in August. Life was good, busy, and enjoyable.

At some point stress began to build, but I kept going knowing that the overwhelming emotions would settle and life would go on.

I don’t know when that changed. It did at some point. I decided losing weight would make me feel better, especially with summer coming up. Healthy, balanced eating slowly disappeared as more eating disorder (ED) behaviours crept in.

Now it’s a full blown relapse. I’ve been trying to ignore it, and brush behaviours and symptoms off as no big deal. My psychologist and GP have warned me of the seriousness of my symptoms. I’ve got blood tests and an ECG to be done today, and follow up appointments with my psychologist and GP next week.

The week after that – hospital. Again. My first admission ever for the eating disorder. The ED has been around for thirteen years. In that time I’ve seen many psychologists, psychiatrists, and dietitians. I’ve done outpatient therapy, intensive outpatient programs,  and group work. I’ve never been admitted to hospital for the ED.

I’ve hidden symptoms, relapses, and hospital admissions from my family for many years. It’s been easier to not discuss my mental health. This time, with Christmas approaching and family gatherings to attend, I haven’t been able to hide it.

Last night I admitted to a family member that I was in the middle of an ED relapse and would be in hospital in the weeks leading up to Christmas. This family member seemed to take it well, and was as supportive as possible. It’s a relief to not have to try to hide the upcoming hospital admission and make excuses about why I can’t make it to family gatherings.