Life in a breakdown – my hidden realities of mental illness

Two years of talking on here about the cross sections of creativity, mental health, parenting and chronic pain, and I thought I’d been honest enough, that I’d bared open enough wounds to make clear what the pleasure and pain of each is like.

More recently, as I’ve mentioned on my blog before, I’ve been living with a relentless feeling of hopelessness. I am constantly arguing with myself over the need to self harm to feel better and most days I feel hopeless enough to wonder whether or not it’s worth seeing tomorrow in. That sounds like a blasé comment, but it’s my reality. It’s a desperate set of circumstances, but being indoors more than 2 years, living without any social contacts, experiencing pain the moment I wake up, and knowing the massive burden I am on my family, is all taking a toll. My partner is the only person I speak to socially, and while he’s working I prioritise shielding him from my growing madness because he’s got a lot on his plate, but that leaves me feeling lonely in a very quiet world.

Although I’ve talked about these things in some detail before, in the last few weeks I’ve been reminded how much there is left to say, and how far we still have to go to properly support and understand what mental illness and mental health mean here in the U.K.

Let me take you back a little way. You’ll probably be aware of my physical health decline and the fact that my disabilities, pains, and general lack-of-ability affects my mental health on the daily. I imagine that would be true of anyone with physical health complaints – even getting a 48-hour bug leaves you feeling mentally drained and generally fed up. Recovery takes time for your body and your mind.

Pepper on top of that 2 years stuck indoors and 8 years with an unmanaged personality disorder, social anxiety and clinical depression, and daily life is made incredibly tricky. I guess I’m on an unreliable rollercoaster that’s governed by a track that moves, cracks and snaps on a random basis.

To make things a bit worse about a week ago I had a fall. Quite a serious fall. Did I slip in the shower? Did my arm lose its strength and give way? Did my legs buckle while trying to take a short walk through the house? While they’re more likely, all these suggestions are wrong.

I fell out of bed.

Fucking idiot, was the first thing my brain barked while my mouth shouted for my partner to appear and help me up at 4am. It took over half an hour to get me up, and I have pains, lumps and cuts that are still causing problems several days later. Yes, we should have called an ambulance, I think most people would have done so, but I told my partner not to because the fear of being outside, around strangers, on my own for the first time in 2 years, was more overwhelming than any pain I continue to feel.

Imagine that. Too afraid to call an ambulance when you fall and can’t get up.

Anyway, what I’ve experienced recently within the healthcare system is the icing on the mental and physical pain cake.

Where several people within the NHS are now involved in trying to help me manage better, there was concern about crossover of services and overwhelming me, which made sense. Meetings have to be staggered because I find an hour of conversation physically and mentally exhausting, so removing appointments that are unnecessary felt like a good idea. In light of this a meeting was suggested where all parties could attend to discuss how best to support me. At least that’s what we were told.

Now, because there is an active complaint in place, I don’t want to go into the details of exactly what was said and by whom, but the net result of that meeting was the decision of NHS mental health services to discharge me.

That’s right, you read that correctly, they decided to discharge a patient with unresolved depression, severe anxiety, extreme agoraphobia and active self harm and suicidal feelings.

As you can guess, I’m fighting that decision, but it’s causing me a hella pile of problems, and top of that pile is the impact all this has on my pain, thoughts, confidence and overall mental well-being.

You see, while I can’t make sense of the decision, someone somewhere believes that this is the right thing to do. Whether that’s a vindictive idea or one that’s genuinely thought to be helpful, I’ll probably never know, but on my side of this it was probably the most upsetting, shocking and horrific outcome that could have been realised.

Bearing in mind I’ve built up trusting relationships with many of the people who have decided to drop my care with immediate effect, this was incredibly hurtful and damaging news. Most weeks my support worker was the only person I spoke to who wasn’t my partner. Those conversations about my anxieties, sleeplessness, paranoia, dangerous thoughts, and how this all crosses over with my pain can’t just be picked up by a new person. I don’t feel comfortable talking to a stranger about them. In my experience it takes months, maybe years to feel truly ready and able to trust someone with your authentic madness. So now, instead, those thoughts are fighting a war in my brain, and with no one to help me manage them it can vary wildly each day which side wins and takes over. The only variables are what happens IRL, and because I’m now unsupported and without someone to call for advice, I’ve had to shut out even more life to try and remain sheltered.

I realise it’s hard to imagine blocking out more when you’ve been indoors for over 2 years and have no friends, but there really was more to lose. I’ve stopped actively writing in my journal, I’ve switched my phone to silent and closed one of my email accounts, and I’ve even stopped answering the door. My partner manages all contact with other people, including any calls about my social and health care. I even manage my finances with the bank via online chat.

Worst of all, I no longer feel able to call helplines because I know from experience that they’ll probably ask me to speak to my NHS mental health team at some point in the call, and explaining all this is fucking exhausting.

As I mentioned in my post about Ehlers Danlos Syndrome, I’m affected by pain and fatigue in quite an unusual way, with some of my joints randomly subluxing at the drop of a hat (it even happens on the bloody toilet). Stress on it’s own often leaves my muscles aching (imagine how you felt after crying for hours on end, how draining those emotions are, that’s what chronic fatigue creates on a daily basis), and I struggle with balancing the two, so blocking out as much as possible feels like the safest way of coping.

But it’s no life, is it? Could anyone else live this way and believe they DONT need mental health support? If I had a friend who’d been this isolated I’d be telling them to talk to their GP, and supporting them in making that connection. Reality for me is, despite all the facts, the NHS have decided I no longer qualify for mental health related help and the impact of that disappointment and betrayal has been massive.

How do you trust anyone new when the last organisation you trusted (specifically your contacts within it) have betrayed your trust so catastrophically?

So what do I do now?

That’s the worst part. For the first time in my life, I don’t know. This web has become so tangled and riddled with emotional booby traps, that untangling it is starting to feel impossible. When I had support I knew I’d speak to someone reliable, who knew me, once every couple of weeks. Help was always on the way. I could gather my troubles and questions over the previous 7-14 days and talk about them with someone who knew my world, not just my mental illnesses. I’ve lost that, and the silence I now exist in is swallowing me whole. On some days, at my lowest moments, that’s exactly what I wish it would do.

Last week, while I was at one of my lowest ebbs, I asked my partner to protect me. Between quiet, desperate tears, I asked him to keep me alive, because I’m not sure I have the strength.

Right now, while I’m living in a period with a little more light and clarity, I don’t feel shocked by asking him to do this. I feel weirdly relieved that I said it, but the overwhelming feeling is one of guilt. For him, the only person I seem to have left right now, and the burden my life has on his and any impact it might have on our daughter (who, thankfully, remains relatively unaware, and I’m proud I’ve shielded her).

So, with all this said, I can’t emphasise largely enough how important these 3 things are in life, and I want this to be what you take away from this post.

1. Knowing the people you can trust at your darkest moment – write them down and keep them safe so you know where to go when you’re desperate. Talk to them about being your emergency mental health supporter, and offer to be the same for them if they need it. You might never need this help, but if you do, you’ll be glad of that little list of reliable people.

2. Speaking to your GP and engage with appropriate support whenever you need health-related help, physical AND mental.

3. Know the numbers for local and National charities that offer support for mental health concerns. My mental health and suicide prevention support lines page has a long list that I update regularly. Bookmark it now so it’s there if you or someone you love ever needs it.

And yes, I know you might think it’s strange for someone in my position to still suggest engaging with the NHS, but I know, deep down, that the organisation is brimming with selfless people who do the job simply because they want to help. Those people far outweigh the number who are there for the wrong reasons, and at this moment in time I believe I’ve just been unfortunate with the people who made recent decisions about my healthcare.

I advocate for NHS support wherever it’s needed for mental health, and I always will. The success stories you can find are abundant, and until recently, mine was probably destined to be one of them.

For me things are obviously going to be quieter, and the need to build trust is going to be desperate and wildly complex, but I believe somewhere will be a break and I’ll start rebuilding my life to something outside of my window.

For now, the view is slow, grey and mundane, and I just hope it will change soon.

Thanks for reading 💜