Let’s talk about… all of it

You know when there’s so much going on that you struggle to put it into words? That’s sort of where I am right now. I’ve been putting off writing this blog update for a while because it feels like there’s too much to talk about. My blog has always been for me before anyone else – and I like to keep it transparent. So I’m talking about it now because I’ve been absent for a while and I want to be transparent about where I’m at on the journey.

On this blog I’ve detailed the horrendous exhaustion I’ve been living with for a long time. Alongside the depression, and the anxiety, it has been very debilitating. I’ve been going through this for such a long time without answers that honestly, I was beginning to feel that there must just be something inherently strange about me as though there was something wrong with my personal character. A part of me had to ask: am I just lazy? Let’s be real about it, I was never likely to run any marathons or go hiking. And then I’d pass out for the fourth consecutive weekend and realise that it wasn’t that I was choosing not to participate – my body simply shut down.

Obviously I consulted (again and again) with my Doctor. My blood tests kept coming back fine. But I wasn’t fine. I went for a shower and then spent three hours shaking on the sofa with no energy left in my body. I spent the next two days in bed because every muscle in my body was screaming in agony. Speaking with my Doctor, we went through the symptoms and the struggles, and everything that we had tried so far. We talked about all the things we had ruled out. And then she told me I have fibromyalgia and M.E (myalgic encephalopathy or sometimes called chronic fatigue syndrome).

Instead of sitting listing all the possible symptoms, I’ve decided to share this watered down visual and highlighted most of the symptoms I’m dealing with daily. There are some fibro symptoms not included but I think that’s a post for another day.

There’s a lot to take in, right? Now here’s the part I’m struggling with the most – they can help me with the pain, but they can’t do anything for the fatigue. They simply don’t know enough about the condition. I’ve spent weeks researching and reading the ME UK website to try and find answers. Sometimes I’m lucky, more often I’m not.

The best suggestion my Doctor can give right now is trying Graded Exercise Therapy. The hope is to build up a certain level of stamina so I can get through basic tasks and get some of my life back. I’m willing to try anything, but the reality is that there are very few success stories. The ME organisation openly states there is no medical evidence to suggest it helps and many ME sufferers say it made their lives worse. One equated it to giving a peanut allergy sufferer a handful of peanuts and telling them to keep trying until they’re no longer allergic. Still, I’m trying to find some positive stories.

So that’s where I’m at. I have a chronic condition that can’t really be treated and I now need to find ways to live with it. Already I’m missing out on family time and memory making because I either can’t stay awake or my muscles won’t cooperate. Sometimes it’s scary – last week I struggled to chew food because my jaw was weak, and I fell asleep standing up so Mr Robinson had to guide me into bed.

I’ve not fully accepted that this is my reality yet. It’s going to take some time. Until then I’m going to sleep – and cuddle my kid.

Depressive Episodes

Every time I talk about mental health on this blog, I try to do it with as much honesty as possible. There’s no point in talking about it simply to give a sugar coated version. I still talk about it because even now, with so many authentic stories out there, the conversation is still swamped with people who have never experienced a mental illness.

It’s strange to me that people who have never been mentally ill presume to understand the experience. We all have mental health, but we don’t all have mental illness. I’ve never had cancer – I’d never dream of telling someone who has experienced cancer what they are going through. Everyone experiences emotions but anxiety as an emotional response is not the same as an anxiety disorder; depression as an emotional response is not the same as clinical depression; and arranging your desk in a certain way does not equate to obsessive compulsive disorder.

I noticed something recently with how people react to things that they are growing tired of. How many times have you seen someone say ‘we need to get back to normal’ in relation to the coronavirus? As though the very contagious virus is going to become less deadly just because people are fed up. This is the type of response people with depression get quite a lot in the form of – ‘it HAS to get better’; ‘at some point you just have to overcome it’; or ‘life goes on’. I’m going to say this for the hundredth time:

An illness doesn’t disappear just because you’re fed up of it.

If it’s frustrating for you, imagine how frustrating it is to live that reality each day. Many evenings I go to sleep and dread having to live the next day. Many mornings I wonder how I can possibly get through an entire day. Right now I don’t have the concentration span to hold a basic conversation, or to read more than one page of a book. The prospect of going outside is horrendous (and don’t get me started on having to speak to people).

What is worse is that these episodes go away for periods of time. I begin to feel somewhat better, and push myself further, and I begin to think the change is permanent. Then another episode takes hold. It’s bleak. Right now I feel back at square one despite a year and a half of doing everything in my power to fight this. I’m lucky that I have a beautiful family and amazing tribe of people to prop me up, but these episodes are exhausting.

Mental Illness Is Ugly

There has been so much talk about mental health recently. So many people have views on the this topic. What has been interesting to me is the amount of people who advocate for better mental health, but are uncomfortable with the realities of a mental illness.

There seems to be a desire amongst the social norm that all people who suffer an illness are an ‘inspiration’ or are ‘heroes’. As though they are martyrs for the cause of wellness and should be applauded for their suffering. It gives the impression that there is some sort of moral value in suffering. As though you gain brownie points for suffering. The reality is that suffering sucks. Big time. Whether it’s physical health, or mental health, it’s brutal and demoralising and horrific. A person can’t be ‘so brave’ and ‘an inspiration’ when they literally have no choice and, if given the choice, would obviously choose not to be living in hell. Overcoming the obstacles is commendable, but the suffering itself is not. There’s no glamour around pain.

Which brings me to my next point – the one nobody likes to talk about – that often a person’s poor behaviour is a direct result of their mental illness. Let’s take Kanya West as an example. He lives with bipolar disorder. Regardless of his status, he lives with a mental illness and has just gone through a very public manic episode. Many people laughed, made jokes, or said something along the lines of ‘his bipolar wasn’t responsible for him doing stupid stuff’. Wrong. Is it responsible for everything? No. Do I like the man? No. But the reality is he has manic episodes which likely account for a lot of the irrational things he has been doing and saying for a number of years. This then leads people to say ‘he should be on medication’ and it stuns me that people are so uncomfortable with the real symptoms of mental illness that they can only tolerate it if that person is drugged. I’m not going to go into the medication debate right now, but the decision to medicate will always be personal.

The real question is: why are people so uncomfortable? I’ve thought about this, especially because there’s a pattern forming where ‘good’ and ‘bad’ symptoms are being chosen. Why? Because people with no mental illness don’t like it if mentally ill people don’t fall into the martyr narrative. If a mentally ill person is not performing their wellness, or ‘putting on a brave face’, then they are not being ‘heroes’ and they obviously are ‘not fighting hard enough’. When a mentally ill person does not perform as a martyr, it makes mentally well people feel helpless, they don’t like it, and they then blame the mentally ill person for their discomfort. Now, given all that, how can anyone possibly expect a mentally ill person to open up and talk?

The current conversation about mental health revolves far too much around the comfort of the mentally well. When a person dies by suicide, it makes a mentally well person feel guilty and angry (alongside very real heartbreak for the people who loved them). Guilt because they feel that they were supposed to do something more, and then anger because the dead person has made them feel that way. Thus, the ‘let’s talk about it’ becomes more about mentally well people feeling that they ‘done all they could’. Except, too often, people don’t want to hear the darker thoughts – because that makes mentally well people too uncomfortable.

And what happens when mentally ill people make people too uncomfortable? A few things. The first reaction is often an attack on the mentally ill person along the lines of ‘you need to snap out of it’ or ‘get a grip’ or ‘try harder’. The second reaction is ‘this needs fixed’ without any acknowledgement that sometimes mental illness can never be fully fixed – often it’s just about managing and maintaining the condition. The third reaction is ‘you need to be involuntarily hospitalised’ – literally removing that person from society to achieve this magical fix – which is very difficult to achieve without the person’s consent. None of these reactions are entirely helpful (unless a person has not already spoken with professionals or is actively a danger to themselves or others) because it makes mentally ill people feel LESS inclined to talk.

It’s exhausting to try and fake wellness that you don’t feel so that others don’t feel uncomfortable. There’s something very strange about asking any sick person to put on a performance to spare the feelings of those around them. When a person asks another person how they are, what they want to hear is ‘I’m fine’. Mentally ill people know this, and until people are prepared to hear ‘I’m horrific’ without judgement, the conversation about mental health will remain stunted.

A Heavenly Birthday

It’s been nearly seven months since the man we called Dad passed away. It feels like yesterday. I can’t believe it’s his birthday, and I struggle with how to mark that moment. He loved his birthday. It feels like an insult to his memory to turn one of his favourite days in the year into a moment of sadness.

Every day still brings unbelievable pain. It’s hard knowing he was still young, and that he should have had so many more birthdays with us. We don’t want today to be filled with our grief – we want to celebrate his life, and his personality, and his memory. We don’t want this day each year to be soaked in utter misery so we’re coming together as a family to celebrate someone we love.

Happy Birthday Dad – we miss you every day.

Pausing

This week I had to take a break. Mostly from social media, and social contact, and the pressure I put on myself to be ‘normal’. Twitter is my preferred platform – it’s a great resource for connecting with other writers and readers. I rarely take a pause from the scrolling. This week I had to. I was scrolling through negative post, after negative post, after negative post, and realised I couldn’t cope. I had burnt myself out.

My inner reserve tank has been empty for quite some time. I’ve barely written anything, and I knew I’d hit a new low when I picked up a book yesterday and couldn’t get past the second page. The urge to find a cave and set up camp is stronger than ever. Honestly, it’s a little frightening. I say that because I like this blog to be as honest as possible – especially when I’m talking about mental health. I have help – medication, doctors, excellent support – but many people are at the start of that journey where every step seems daunting.

This year has been a write off. We’re seven months in and I don’t know where the time has gone : I don’t have anything to show for it. I had set goals for myself this year, but I’m worried I’ll only be ticking off a couple from the list. And then I take a pause and remember that it’s fine. My goals are for me. If they don’t work out, I can try again. Autumn and Winter are often productive months for me, so perhaps it’s not a big deal if a few months were slow.

There’s so much about the current covid situation that is awful, but it has given me time with my family. I got time with Mr Robinson while he was furloughed – time we would never have normally been able to spend together. Those are silver linings. We may have had to do quarantine birthdays, cancel a holiday, and speak to people we love through barely open windows, but we were given a chance to pause for a while.

It has occurred to me that I’m someone who needs to incorporate more time for stillness. When I’m not considering what I’m doing today, tomorrow, next week, or next month, I’m usually filling my mind with a thousand smaller tasks. At no point do I have a day where the only goal is to relax. Don’t get me wrong, I sleep plenty, but I sleep because I’m burnt out and that is not the same as relaxation.

In reality there’s only so much relaxing a person can do with a two year old. Thankfully our son is not a morning person and so we have an unspoken agreement that mornings are slow, lazy affairs while we find some energy. That will change soon as he becomes old enough for nursery, then school. But for now I’ll continue to enjoy the small pause we take each morning – even if I’m subjected to kid’s TV.

Depression sucks.

For a while I’ve not used my blog. I have had nothing to say that I’m willing to share, and there has been too much going on in the world that I felt needed more space. This year has been a personal struggle. It’s almost impossible to avoid the stress of the outside world, but my mental health has added new depths of strain.

I don’t want to take away from the progress I’ve made with my depression and anxiety. However, it’s not getting better. There’s a very real chance it’s getting worse. I’ve known this for a few months now, but the current covid situation has put my treatment on hold. I feel like a phone on 10% battery and even after a full night of charging, I only wake up with 20%.

The coronavirus has caused mental health issues for many people – including people who have never had problems in the past. For those already struggling, it has been a living nightmare. Before lockdown I was already struggling with getting out of the house and socialising in groups. Then I was handed months of not being able to do those things. Now, I have to try and readjust but the progress I had made has been wiped from the slate.

Then there’s the worst part – health anxiety. I’ve spoken before about how easily my anxiety is triggered by matters of health. Now we’re living in a global pandemic, and it’s nearly impossible to reign in the fear of the outside world. My inner battery is draining faster than ever.

Hopefully this will pass soon.