ME/CFS: It’s Not Fair

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It’s one of those days. You know, one of those days where everything hurts, everything makes you cry, you feel so alone and isolated, life feels empty and meaningless. One of those days.

I have ME/CFS which comes with chronic and severe fatigue and pain. I’m exhausted and in pain. I’m stuck in bed watching TV because I’m not well enough to do much else. RSI in my wrist has flared up which makes typing difficult, and any creative projects I could work on impossible and unwise.

I feel left behind and left out, like the world is rushing by whilst I sit and watch from the sidelines. I know this isn’t an entirely accurate perspective, and I know I don’t always feel this way. It’s just today I’m at home, in bed, watching TV because I’m not physically well enough to do much else. I could push myself, but that will only increase symptoms and make tomorrow worse.

I’m well enough to be very bored needing to rest.

Other people, ‘normal’ people can feel bored, and get up and leave the house. If I chose to leave the house today then I’d be unable to leave the house tomorrow to see a friend as planned. I can’t choose to go outside and do some gardening because it takes too much energy, and I can’t use my wrist. The little crochet dinosaur I’m working on for a new nephew also has to wait because of my wrist. I have to save all my energy today so I can use it all tomorrow, and spend the weekend in bed recovering.

This is where the tears come in.

I’m crying because I don’t know if I’ll ever be physically better.
I’m crying because I feel so alone and left out.
I’m crying because I don’t feel in control of my life.
I’m crying because I don’t want this to be my life.
I’m crying because I don’t know how, or if, I can change this.

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Weighted Blankets for DID and PTSD: Three Years On

The title is a lie, it’s been three and a half years since I bought my weighted blankets, and then reviewed them. I still do not regret buying the blankets. I can’t remember how much the 4kg lap blanket, and 8kg single blanket cost. It was several hundred Australian dollars.

Last year, between multiple hospital admissions, I finally finished sewing all the fiddle tags onto my single 8kg weighted blanket.IMG_4981

There’s lace, chain, cord, zips, velcro, elastic, corduroy, buttons, sequins, and more! When I’m dissociated and need to ground myself I feel each one, and try to describe it to myself. I focus on what it feels like, how I’d describe it to someone who has never heard of, seen, or felt anything like it. Most of the time ding that is enough to lessen the dissociation to a point where I can move and talk. It’s not a magical quick fix that works instantly, or every time, but it does help.

Whilst the fiddle tags help with grounding and lessening dissociation, the weight of the blanket seems to help most with anxiety, and flashbacks. My anxiety is often tied in with the relentless worrying that I do, and sometimes spirals out of control. The flashbacks tend to come with some anxiety, but a lot of fear, even terror. Either way, intense emotions.

The weight of the blanket helps me calm down and settle. Usually I double up the blanket, and try to make sure all of it is on me, and not hanging over the sides of my body. The relief is instant. It’s almost like flicking a switch. I go from feeling distressed, anxious, and terrified, to calmer and more relaxed. My body relaxes as soon as the weight is on me. I liken the experience to holding your breath for as long as you can, then finally being able to take a breath. Instant relief. There’s also a sense of calm, safety, and security. Under that blanket I know I’m okay, I know I’m safe.

How often do we use it? Honestly, not very often now. Maybe once a month, but it depends how we’re feeling and what’s going on. It’s actually one of our most forgotten grounding skills. As much as it’s useful, we still forget and need to be reminded to use it by friends or our treating team.

The other use we’ve found for the weighted blanket is to help manage pain. I have ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) which causes, at times, severe pain. I’m not sure how the weighted blanket helps, but at a guess I think the weight helps my muscles to relax, which in turn helps lessen some of my muscle pain. Again, not a quick fix, and not something that will help everyone, but something I’ve found useful.

‘Where have you been?’

‘I haven’t seen you for so long! Where have you been?’

I lost count of the number of times my colleagues asked me this yesterday. It was my second shift back at work in as many weeks. My colleagues can be forgiven for not having seen me. I’m able to work only a small number of hours each week, and my roster changes each week. Often we miss each other because of different shifts.

Where have I been?

Back and forth between healthcare appointments, with the remainder of my time generally spent at home resting. During the peak of the health chaos I’d been to four different hospitals in seven days. Then there were the follow up appointments with my regular healthcare team, as well as specialists. I’m still waiting on two more outpatient specialist appointments, but things have quietened down.

It was very scary and stressful having a potential new health issue come out of nowhere. I’d been feeling my usual ME/CFS symptoms – worn out and sore. I was told the condition I may have could cause serious complications if left untreated, and researching the prognosis online did not help. Thankfully further tests have revealed that it’s unlikely I have the condition. I have further tests and follow up later in the year.

Then (because there’s always more!) my mood spiraled upwards into hypomania. Whilst that’s been fun, entertaining, and refreshing, it’s also destroyed my budget, strained some friendships, and physically worn me out. ME/CFS and Bipolar II are an utterly ridiculous combination, and the hypomania has been more difficult to manage this time.

As for The Committee there have been quite a few changes since our hospital admission over Christmas. Nothing hugely noticeable to anyone on the outside, but some significant shifts inside. Attitudes have changes, and we’re more focussed on working as a team than ever before.

I’m hoping (and crossing my fingers and toes) that I’ll be able to get back to writing more regularly now, but please be patient with us.

The Monotony of Self-care

Eating, drinking, showering, cleaning teeth, brushing hair. That’s self-care, right?

It is, but there’s so much more to self-care than the short list above. Self-care is everything I need to do to stay well. Some of that will cross over into specific relapse prevention techniques, but I’ve found that thinking of it as self-care is more helpful.

My days include basics like eating, drinking, bathing, and sleeping, but there’s much more to it than that. There’s daily medication, then PRN medication to help manage varying mental health symptoms, as well as managing ME/CFS symptoms and flare ups.

I usually have one major task to complete each day that brings a sense of success and achievement. That could be work (retail cashier), a small gardening project, a household chore, or an outing (eg. a friend taking me grocery shopping, or going to a healthcare appointment).

On top of all that I try to do at least one thing each day that brings me joy or pleasure. What that activity is can vary greatly. There’s creative projects (eg. knitting, painting, colouring in, sewing), gardening, taking photos of the birds that visit the birdbath in my courtyard, watching a movie, taking an epsom salt bath etc. It’s a limitless list!

In between each activity there’s rest. Lying down to help ease pain or changing from a high energy activity (eg. household chores) to a quieter activity like watching a movie or TV show on my laptop. Resting so often, and so much is how I carefully manage ME/CFS symptoms.

My final activity most days is journalling. I turn my laptop, and the TV off. I turn a small lamp on in my bedroom, and turn off the main light. Then I get all our journalling supplies (we each have our own pen to write with) and our journal and get started. I write everything that comes to mind. I let my thoughts wander and write whatever comes. I checkin with everyone and we, as a group (a committee!) discuss whatever comes up.

I usually take bedtime medications that make me drowsy halfway through journalling. By the time we’re done writing we’re sleepy, relaxed, and ready to sleep.

This, all of this, is self-care. Every single day. Over, and over, and over. This is part of staying well.

What do you do to take care of yourself?

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%.