What if it doesn’t get better….?

Before anyone gets too far into this post, I’m going to be brutally upfront about the fact that this isn’t one of my cheerier posts. I keep this blog for me, and to help organise my thoughts so I can reflect on them so if there’s anything about mental health that makes you uncomfortable, I won’t take it personally if you find the off ramp.

I’ve been thinking a lot of late about the possibility that my mental health issues could be permanent. When all this started, I had it in my head that it was going to get better, it was all fixable, and by the time Gabe was a bit older I would be back to “normal”. It’s nearly been three years and I’m not far off where I was at the beginning. In many ways I’m worse. Sure, I’m not self harming but it’s a very fine line more often than not.

Laid out in front of me, I can see the many things that contribute to my mental health feeling worse. Much of it is not fixable right now but, what concerns me the most, is that I know there are elements that I may never be able to resolve. There are thoughts within me that repeat on a loop during my darkest periods to the extent that even when everything is already bleak, I can’t dig further than their surface level because I fear the drop into an abyss that will swallow me whole. I can patch up surface wounds, but I’m not able to fix internal damage. Some scars will always be visible.

So what if I never get better than this? I’m not actively suicidal, I’m not self harming, I don’t want to leave my kid without a parent or anything like that. But I also don’t really want to be here. There is a glimmer of sadness each morning where I think “damn isn’t it a shame that I woke up again”. I’m not saying that to alarm anyone – I won’t leave my son – but it’s exhausting pretending to be enthusiastic about life. If I were to be hit by a bus tomorrow, I wouldn’t have had a hundred things I still wanted to do beyond seeing my child grow up. So it’s getting harder to imagine living like this forever.

This situation is exhausting for me, and it’s exhausting for the people who love me.

So I took a break

I put my blog on a hiatus for a little while. Recently I’ve not felt like writing – for any reason – and I put it down to the weird circumstances we are still living in. I thought all this would be over by now if I’m being honest. This feels never ending. At the time I’m writing this, I have just received my first vaccination, and I should be feeling excited about getting my life back. I don’t know why I’m not.

Tonight I am slowly coming to terms with the fact that my mental health has deteriorated more than I have been willing to admit for a while. I knew my physical health had declined, but mentally…. I think if you are someone who has been mentally unwell since before Covid, it was easy enough to believe nothing much had changed. After all, I was still anxious and depressed, so what’s new?

I’m in constant consultation with my doctors at the moment about medication. We’ve been trying something new recently, and we’ve toyed with it twice now. But still, in the last week, my anxiety has hit a peak. I should have probably blogged about it. I try to keep this forum very honest and open – I have always tried to use it for that purpose and ultimately for myself. Recently, I’ve not felt like being honest with myself about how I’m feeling.

People tell me a lot that I’m strong or brave. I don’t feel strong. I certainly don’t feel brave. To the contrary, I’m scared of a lot of things in life. I can be strong for other people because I value the people I have in my life, but I can’t always be strong for me because I don’t always value me. That thought is looming over me a lot right now: it’s the permanent elephant in the room. Without being fully aware, I seem to have made friends with my own darkness instead of trying to address it, and I don’t think that’s been the right choice for me.

I have always said that my mental health is a part of my life, and something I have to live with and manage in similar ways to my asthma or, now, my fibromyalgia. Something has changed. For a while I have been more depression than I have been myself. One reason I am less enthusiastic about leaving lockdown is the knowledge that I will have to face myself again, and I’m now more scared of me than of the depression.

I have been asking myself who I am. What do I like? What do I want to achieve? I’m not sure I have any real answers to those questions. I try to be me, but I’m not sure if I’m particularly likeable. I certainly don’t like me for any length of time, and so I’ve systematically closed myself off from the world and that’s been fine because the entire world is closed anyway. That won’t be the case for much longer.

I don’t know how to reintegrate myself into a world I’m both terrified of joining, and terrified of being rejected from. Generally I want to hide because I don’t feel like I have a place. I’ve never really fit in anywhere, and I don’t expect that to change any time soon. I’m tired, so tired, and I don’t know what the future holds.

Long Term Mental Illness

There’s a misconception which lingers during discussion of mental health at the moment, and that is the belief that you are dealing with a completely curable illness. There is this idea that because mental illness has an emotional component that it will last only as long as any emotion. It’s true that many people overcome their illness, recover, and go on to a normal life. Unfortunately it’s not true for everyone.

The hardest part is that the longer the illness goes on, the more frustrated other people become. Naturally, people want to help a loved one who is ill but it’s not so easy when nothing you do is working. It’s hard to be patient all the time, or listen to the same pains repeatedly. Loving someone with a mental health condition can be difficult.

It’s easy to tweet ‘keep fighting’ to someone or to offer to listen. But it’s much harder when the illness goes on for a prolonged period of time. I’m stuck in the position right now where I have relapsed in a major way despite professional help, medication changes and a loving support unit. I’ve accessed everything available to me, so why am I still unwell? And I know the people around me wonder why too. There’s a belief that there must be a reason – or worse, that if all the help is being given, then it must just be something within me that is flawed. Perhaps I’m just not doing things correctly or being honest enough or pushing hard enough. But it’s been two years of pushing uphill and trying, and retrying, every suggestion I’ve been given.

I want to be categorically clear before I say this next thing – I am not suicidal nor do I have intent to harm. But I can see how people get there. When you have a horrific chronic condition that destroys every aspect of your life and then also makes it so the people you love struggle to support you, it’s not difficult to see why the end result would be death. After all, death is the final destination in life and the outcome of any number of serious illnesses. The sad part is that most people with mental health issues don’t want to die, they just want to feel less ill. I don’t want to leave my son or the people I love – but the battle is getting harder instead of easier.

This is the first year I have ever wanted to skip Christmas. I don’t want to decorate or shop or wrap, and I’m not even looking forward to the food. I don’t look forward to anything at the moment. What’s the point when the only two emotions available are bleak sadness or crippling anxiety? I can see all the reasons why people may be happy or excited but I don’t feel them. It’s been well over a month since I went to bed hopeful that the next day would be better.

Still, I keep trying. I don’t plan on giving up. My kid is excited about santa and presents and Christmas songs. He thinks our tree has magic and he likes to look at the lights. I won’t miss that for the world – even if I can’t share in his joy.

Demisexual

This is a weird post to write. It’s another one of those topics that I think are important for transparency on this blog. This is not a new topic for me, but I’ve still been reluctant to talk about it at any length. Regardless, I’m Demisexual and yesterday was National Coming Out Day.

So what is demisexual? What does it mean?

It falls under the asexual umbrella and it basically means asexual with the possibility for an exception if the emotional bond is strong. It doesn’t mean heterosexual but celibate, or sexual but wants to ‘take it slow’. Some demisexuals can deeply love a partner and never have sexual attraction for them. The base point is often asexual, there’s just a CHANCE in certain circumstances.

It doesn’t mean demisexuals don’t have sex. Some absolutely don’t – like, ever – but many do. Think of it this way, if you’re straight and attracted to men/women then consider how you feel sexually about gender you’re not attracted to. The same goes for homosexual people – what’s your general sexual feeling regarding the opposite sex? In general, for both cases, the answer is likely ‘not interested’. Asexual just means ‘not interested’ for everyone and demisexual means ‘95% not interested but a chance if I am strongly connected to a person’.

Generally this doesn’t effect my life much despite it being a part of my identity. I have known for five years, my husband has known since day one, and our relationship isn’t particularly effected because our bond is strong. But in all seriousness, plenty of asexual people struggle with relationships and I’ve recently been reading about the issues regarding sexual assault for those identifying under the asexual umbrella. That’s one of the reasons why I wanted to talk about it, because although I can pass comfortably in life as I’m in a heterosexual relationship, it doesn’t change the fact that I’m demisexual. For example, I can appreciate aesthetic beauty but I don’t get sexual attraction to an actor or a person I meet in a bar.

This likely won’t be something I talk much about if at all after this because ultimately my relationship is private. Anyway, I wanted to share this extra part of me.

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.