A strange sight indeed. Seeing a face, which you know isn’t there, and is devoid of any and all features that may identify it as a specific person. It is a generic face.
You know what I mean. Eyes, nose, mouth. Kind of not quite egg shaped.
Generic. Nothing that can be used to give this person a name. Although I feel its female. I feel its gollum manifesting into something new. A new way to taunt me.
As you all know, Gollum is the main voice. The big bad bi… rhymes with itch. The one that is determined to make me hurt. The one that wants me to suffer.
It’s only been a few days. I started seeing it outside of my living room window. Smiling in at me. That’s where it stayed. Until last night.
My mum smokes. Her being my carer, it means she’s my support bubble and she was here last night. She had gone outside into the front garden for a cig, and I’d gone and sat in my chair at the door to talk to her. When it flashed up in front of me.
I was so scared I had to come inside. I wasn’t expecting it.
I’m presuming all of this is down to lack of sleep. I dont sleep well. At all. I average 3 to 4 hours a night if I’m lucky.
And I don’t get chance to nap, as I’m homeschooling 3 children in the middle of a pandemic and trying to deal with my mental health, attend various phone call appointments for my physical health, while having an sense of dread about answering the phone, and have my youngest son assessed for autism.
So as you can imagine, things are pretty hectic. Maybe that explains the face. Maybe it’s all down to the stress I’m under. Or perhaps I was right all along and there’s more to this than a simple temporary case of psychosis.
Temporary. It’s been over 2 years. I have an appointment on the 22nd woth a psych. I wonder if they’ll finally admit there’s more than a temporary issue. That I do need more support.
But, so far, nothing has helped and everyone has refused to give me a diagnosis other than “psychotic depression” but then my depression was removed and I was left with just “psychosis”
Thats it. Psychosis. But something must be causing the psychosis. Something must be making me hallucinate. Something is making it so that I hear voices. But for now, I wait. I wait, I twiddle my thumbs, I do their silly mindfulness techniques and their meditation.
I talk about it, I share my feelings, I do everything that I’m supposed to do. Yet I still have no answers and pretty much non existent professional support.
So where does that leave me? For now, it leaves me hearing voices and seeing faces, none of which are there.
I had an appointment this morning with my care coordinator and a psychologist. They’re referring me for yet more therapy, but they arent holding their breath. I was also told I only have a year left with the service… after that they’ll no longer support me and I have no idea how I’m expected to cope with no support. I hear voices for crying out loud.
I’ve literally no idea what I’ll do. I’ve been frantically googling services in my area to try and figure out my next steps, but all I’m getting are links to the early intervention team… who I’m currently under.
When I started with them, and they told me that they would stay involved for up to 3 years, everyone, including myself, beloved I’d get better.
But I haven’t. If anything I’ve got worse as I hear more voices than the one I started with.
3 years seemed such a long time. But now 2 thirds of that is gone and it seems like hardly any time at all. Especially given the inconsistent contact with my care coordinator.
She is going on maternity in a few weeks, so my last year will be covered by someone new. Someone I don’t know and who doesn’t know me. I’m torn as to whether this will help as they may be more useful, or if this will just make accessing the vital support even more difficult as the new CC won’t have any idea about me or how I feel.
So somehow, while struggling through lockdowns, homeschooling 3 children, recovering from covid myself and dealing with my many physical disabilities, I have to magically get better in a matter of months.
I’m back after a rather long absence. I’ve been dealing with a lot. Not just my mental health, but from abuse and harassment from another blogger, who accused me of calling her names. I hadn’t. I don’t know who did. But since then I’ve asked a friend of mine to create a twitter account in the same name, to try and figure out who the original tweeter was, through followers etc. So far no luck, and still the harassment continues.
It got so bad that I had an ambulance arrive at my house. This blogger had phoned the police, and told them that I was suicidal. I was not. As you guys and gals know I’ve been very open about my mental health issues. I’ve not been suicidal for a couple of years now and I have a massive support network around me.
I phoned the police after the ambulance turned up, not knowing who it was who had made this malicious call at first. I honestly thought it was my ex.
The police told me who had made the call, and where the call had come in from. They said they’d have words with her.
The problem is, this blogger knew stuff that I’ve never made public. She knew my phone number, my address etc. The only person who could have passed this information on was the person I thought was my best friend.
So not only have I been dealing with the harassment and accusations, which haven’t stopped, but I’ve been grieving the loss of a friend. Of the person I thought my friend was.
During all of this I’ve not known where to turn. I’ve had to close down my Facebook page, I’ve been wary of who I share things with, in case it causes more trouble.
But I’m back on here. I’m not going to let these people stop me from blogging. Blogging and getting my thoughts out have helped me immensely, and if another blogger thinks she’s somehow better than me because she doesn’t suffer mental health problems, then I’ve got news for them. Any mother who would phone the police on a woman and lie about her, stating that shes unsafe around her children, is not better than anyone.
Frankly it’s the lowest of the low. It was a blatant lie, and anyone who does that, for some sort of petty revenge for something they think the other person did, is disgusting. This person is supposed to be an adult.
I won’t name names as honestly, I don’t want to give them the pleasure.
But I will not be kept down.
I always get back up. Thank you to everyone who has supported me and continues to support me in my journey. I am eternally grateful for you. And if you’d like to follow me on Instagram I’m on there as Losing_everything_but_my_mind
It feels like I’m swirling around in some kind of vortex. Being pulled further and further down.
These last few weeks have been difficult for me, despite my best efforts to stay positive.
I feel like I’ve lost control over everything in my life. Its like being a child again, having my mum taking care of me. I feel like I’m not fit to be a mother because my own mother is the one taking care of me.
And that means the voices have something to latch onto. Something to grab and twist and make me feel worse about.
It is a constant battle just to ignore what they say. To fight against the untruths that they tell me. It is exhausting.
But I can’t sleep either. Im averaging 3 hours a night. I don’t sleep, I’m in pain, the voices are particularly bad right now. Its no wonder my mood has taken a dive really.
But its not healthy. I have to try and free myself from the devastation of the vortex. I have withdrawn from social media, posting only for silly things and not really engaging with either my followers of this blogs Facebook page, or on my private page to friends and family.
I’ve become lethargic and have lost interest in caring about my appearance. Not in a vain way, but just generally being tidy. But now I’m a mess. My hair is greasy, I have spots galore. I feel unclean.
But at the same time I hate showering as I need help. Im 28. I shouldn’t have to be bathed.
I dont know how im going to turn things around yet. I just know that I need to. And I felt I had to offload to be able to take the first step to regaining control.
So I want to thank you all who read this. It means a lot to me to know that I have an amazing support network thanks to you, and hopefully I’ll able to see the good in life again pretty soon.
As you know, I’ve spent some time in the hospital, quite unwell.
Well, now its time for me to start thinking about becoming independent again and learning how to do things with my new disability added to my ever growing list.
To do that, I need to think about mobility. How I’m going to get around.
So I’ve got a mobility scooter to help me pooter along and get stuff done.
Next I need to think about hygiene. How can I keep myself clean when I can’t even get into the shower? So to help with that I have a shower seat and half step on the way to me.
I also need to think of the toilet. How can I safely use the lav? Well, im very lucky I have a downstairs toilet. But it is still difficult, so the powers that be are sending a toilet frame to go around it. Upstairs there isn’t a lot of space, so they are sending a raised toilet seat and installing a grab rail on the wall.
I’ve also got a bed handle coming to help me get in and out of bed.
Last but not least, how do i safely prepare meals? Well, i can’t stand for long periods, so i have a perching stool to help me reach the sides to prepare food and get it in and out of the oven.
All these things seem so simple, like no big deal. But when you’re only 28, its easy to feel like your life is over.
But I wont let this defeat me, I will hold my head high and accept the help I need. I wont be ashamed of my needs. I wont be ashamed that my body doesn’t do what it used to. This body has survived all sorts of trauma, yet it is still standing despite being broken beyond repair.
So im proud of my body. Im proud of what it has accomplished.
These were the exact words I said to my mum a week ago.
A week ago, I had done the school run as usual. I came home after a 50 minute walk each way and I couldn’t feel my legs. I was numb from the hips down and in a great deal of pain in my back. I thought it would pass, so while I waited i phoned my mum and, mimicking Donkey from Shrek, I told her I couldn’t feel my toes.
I laughed about it. Until it didn’t go away. Then I felt damp down below and realised I had, embarrassingly, wet myself. I panicked. What should I do?
I checked with the online 111 service. They told me to phone an ambulance. So I did the not very sensible thing and got a taxi up to the emergency department at the hospital.
Upon arrival, I had to have my temperature taken before I was even allowed to enter the building. Once inside I was triaged almost immediately and sent to the A and E doctors.
They spent hours testing my legs, waiting to see if the feeling would come back, deliberating over whether I should have an MRI or not as I had had one only a week previously. I was swabbed for MRSA and Covid. The Covid swab was not nice. At all. But I was clear.
I was eventually sent for an MRI then I was admitted to the neuro ward. I sat in the bed and looked around me. The rest of the women were elderly. They looked at me with pity. I learned that the youngest of them was 71. At this point I still had no idea what was wrong with me. All I knew was that I was less able to walk than the 76 year old in the bed next to me.
I was given what they called a turkey roast. It was 2 slices of what I presume to be Bernard Matthews turkey, 3 cremated roast potatoes and some tinned carrots. It was the first thing I had been offered all day. It was now after 5 pm. I had arrived at hospital at 10.30am.
I ate. I was starving. I then asked for more pain relief. The nurse said she would sort it for me. I didn’t get any pain relief until 11pm. I was crying in agony, wearing a nappy because I couldn’t feel my legs. My back was actually hot to the touch.
They dosed me up. I slept.
The next morning I had tea and toast. The consultant came to see me. He explained that I have a very severe type of arthritis which was partially pressing against the cauda equina nerve. He told me I was lucky. That had it been fully pressing against it I’d need surgery.
I didn’t feel lucky. I’m 28 and I have arthritis so severe, I am no longer allowed to walk further than the end of my street, and even then I have to use my crutches. The worry is that I will cause my spine to erode. It has already started to.
They told me I could be discharged and go home, as long as i had someone stay with me for the next 6 weeks. My mum said she’d stay. The physiotherapy team then came to see me.
They helped arrange for a mobility scooter, a perching stool and have tried to hurry along the social services assessment so that I can have my home adapted for my needs.
If I let it, all of this news could leave me spiralling into severe depression again. 28 years old and my life will never be the same again.
But I wont let it. It is what it is. And once everything is in place, I should be able to live a fairly independent life.
I’m improving day by day. I can now feel my feet. Although my thighs are still numb. I can also tell when I need the toilet now, so i am out of nappies and just using a liner.
I can’t let this get me down. So here’s to the future. However that may look.
Everyone tells you that if you’re depressed, a job you love will give you purpose, lift your spirits, distract you from the negative thoughts.
My experience was exactly the opposite.
I worked in a nursery, in the baby room. I spent my days looking after tiny humans, cuddling them when they needed comfort, praising their tiny achievements, reading, singing, laughing and playing.
I loved my job. It was amazing. I got to help these babies grow and develop, and I got baby snuggles. And the best bit? I could hand them back to their parents at the end of the day and sleep soundly at night, knowing I wouldnt have to get up to a screaming baby!
But it didn’t help my depression. In fact it made it worse.
Not because of the job itself. But because of the people I was working with.
When I first started it was clear the manager disliked me. She tried to fire me for not going into work despite injuring my wrist, yet she was the one who told me not to go in. I demanded to speak to the owner and suddenly I was given another chance.
I got on well with my room leader. I did my job, loved those babies as if they were my own, observed and assessed them against the Early Years Foundation Stage (EYFS) ensured they were developing and meeting their next steps, planning for activities and generally having a blast.
That all changed when Ofsted came out.
By this point I’d already suffered unimaginably when I was told by doctor’s I couldn’t continue my pregnancy with my twins. So I was already depressed, and that started my PTSD.
But Ofsted came out. They spoke to us. We felt it went well. Only there were issues with management. Which meant we only got good, not outstanding.
Well that was it. It was all the staffs fault, not the managers or deputy managers. The deputy manager happened to be my room leader. The one I got on well with.
The deputy was demoted. The official line is that she handed in her deputy role voluntarily, but no one buys it.
She then became angry and bitter. Blaming the staff below her. Blaming me.
She started accusing me of deliberately messing up, hounded me about my files and paperwork. Apparently they were wrong. They had never been wrong before. I asked her to show me where then I could rectify it. I was devastated at the idea I had somehow messed up. She couldn’t show me. There were no examples. Because it wasn’t wrong. She just looked for any excuse to have a go at us. Us being me and the other staff member that worked in the baby room with us.
It was awful. I was already depressed, suffering with PTSD and trying to wrap my head around losing my babies. They knew what I had been through. My room leader told me that as I had ended the pregnancy, I didnt lose them and that I shouldn’t be grieving.
I was told to pull myself together. I was told to put a brave face on and just deal with it. No one understood.
My room leader did the late shift. She was meant to finish at 6 each night. It got to the point she would leave early every night, leaving me to cover as I was the middle shift. I was working almost 50 hours a week, then going home and dealing with everything there too as the kids dad was useless. He did nothing.
I was exhausted. I managed to convince my manager to drop my hours to 4 days a week. Thinking the extra day at home would benefit me.
I was still expected to cover at the drop of a hat, I was expected to be available at all times, missing out on important appointments for my children, yet the room leader used to walk out of the nursery to take her 24 year old daughter to get the contraceptive injection.
The double standards were glaring. And upsetting. I had tried so hard to be accepted. I thought she was a friend.
But she wasn’t. I was her friend until it was time to throw someone under the bus. I became the one who was to blame for everything and anything. The microwave broke… my fault. The toaster setting got turned up… my fault. The pots didn’t get washed immediately because I was left on my own with 8 babies… my fault. Anyone who knows about childcare knows the ratio for babies is 1:3. I shouldn’t have been on my own. But this happened regularly.
And somehow it was my fault.
I quit work because the childrens dad left and I no longer had childcare, and they were unwilling to adapt my hours again. They said they had already made too many adjustments for my mental and physical health.
So I handed in my notice.
Since then, I’ve started to feel much better about myself and looking back I can see just how toxic my work environments was. There was so much that happened that I’ve not mentioned. I will never go back to that kind of environment. Not that I can, as my doctors have said I’m unable to do such a physical job anymore, but even so. It was unhealthy, and definitely contributed to my feeling of never being good enough, blaming myself for everything and feeling like crap.
It seems to me that work isn’t always the best option, especially when the workplace is as toxic as mine was.
I miss the babies. The families I helped. Of course I do. I don’t miss the staff, the environment and the feeling of uselessness.
So for now, I’m concentrating on getting myself better. I hope one day to return to work. I hope I can retrain and find something more suited to my physical abilities and needs. But for right now, I have to concentrate on me. Not work. Work will not help me.
The last few weeks I’ve been really struggling with paranoia. I’m convinced that there is someone stalking my home. Someone watching the comings and goings (not that there’s much going on with lockdown!)
Whoever this person is, I feel they don’t much like me and want to take my kids from me.
Its terrifying. I spend my days looking out of the windows, trying to catch a glimpse of whoever is out there.
If I’m in the garden with the kids, I am constantly looking over my shoulder and telling the children not to go into the opposite side of the garden without me.
Then comes night time. When all is quiet. The kids are in bed. There’s just me and my voices.
And it gets worse. The paranoia that is.
I’m certain someone is out there. Stalking the gardens, trying to see in through my closed curtains. I triple check the doors are locked constantly, peek out through the curtains, have my phone ready to phone the police at any moment.
And i do this all night. I wander the house, checking the windows, making sure my doors are still locked (why they wouldn’t be i don’t know, but i feel I have to do it)
I’m not sleeping. I haven’t slept more than 2 hours a night in weeks.
And what does my mental health team have to say about it all?
That I’m OK. Im still not threatening to harm my children so I must be coping.
Is that what it takes to get support? Is that the lengths people have to go to to get the help that they need? But by getting to that point, your children are thennin danger from you and in swoop social services.
Which would prove me right. Theres someone out to get me. Someone wants to take my kids.
Now maybe all of this is because of the split from their dad. Hes known for his ridiculous comments, he tells me how awful I am, he tells me I dont clean the house (because Bernadette had her my little ponies out on the floor when he turned up) and that as im disabled the kids would be better off without me.
But I know his comments are ridiculous. I know my kids are better with me than they would be with him. Theres a reason that they only want to see him once a week, and even then ask if they have to.
So why am I so paranoid? What if someone really is watching us? What if its the ex? What would i do then?
And how do I go about getting help for this? I need sleep. I need to rest. And i need to feel like my kids are safe in the garden.
And it seems I’m stuck on a never ending loop which only makes me feel worse.
You know that saying? Things get worse before they get better?
Well, things are definitely getting worse.
As I type this, I am on my sofa, in agony with my Ehlers Danlos Syndrome, a rare condition which causes hypermobility, unstable joints that like to dislocate, stretchy and easily bruised skin and a whole host of other problems.
I haven’t showered in days because I can’t get in and out of the bath alone, nor can I wash my legs, so I’m trying to make do with washing as best as I can, but it isn’t the same. And it’s embarrassing. Its embarrassing to admit that I cant do such a simple thing like getting a shower.
I have a cup of tea in my hand, and thanks to my autistic superpowers, I can not only feel the heat from the cup, or smell the soap from my skin. I can hear one of the cats walking around upstairs, the wind blowing in the trees, a neighbour shouting in the street (presumably to another person) my next door neighbours TV, my daughter going to the toilet (I can tell its her by the footsteps) and the sound of my leg bouncing up and down causing vibrations.
So let’s see, what emotions am I feeling? Well, we have pain, (thanks EDS!) embarrassment, disgust, (thanks to being unable to shower) and I feel overwhelmed by noise (thanks autism)
I also have fear. I am terrified. Because I have yet another voice.
I started this journey with just one voice. One I dubbed Gollum as it is awful. It is corrupt and twisted. It wants me to hurt myself. Gollum is so desperate for me to injure myself in some way that she (it’s a womans voice) never shuts up. And i mean never. It wants me dead. And it has come close to getting it’s wish a few times.
Then came voice number 2. The whisperer. Chattering away in the background, throwing in giggle every so often and the phone ringing. I don’t know why, but im certain the phone belongs to the whisperer. I dont know what the whisperer is saying. I can never make it out. All I know is that this voice is male and they obviously find either themselves or the person on the other end of the phone, amusing.
And now there’s number 3. To be fair to number 3, so far she’s been nice. Warning me when I’m about to trip over something and also telling me to eat etc. This voice sounds like my mum. So voice three has been named invisi-mum. Invisi-mum isn’t there all of the time unlike gollum. She comes and goes as she pleases. Its very strange having a phonecall with real mum because I struggle to figure out which one is speaking!
But while invisi-mum sounds kind, and loving and wanting the best for me (just like real mum) I’d rather not have her at all.
I’d rather not have any of them. They make me scared. They make me feel even more of an outcast. They fill me with dread that I’ll never recover. They seem to mock me. Every time I feel like i may be gaining control of my life, getting used to the voices, and improving, something happens to set me back.
“I’ve always been on the outside, watching the world go by, a lonely observer of life, wanting to fit in without becoming something I’m not”
Christy Ann Martine
And just to top all of that off, I’m paranoid. So much so that I’m not sleeping at night as I’m certain someone is walking around outside, and that there is something in my house. And it terrifies me. So i stay awake, just to make sure nothing happens to the kids.
I’m getting an average of 2 hours a night according to my fitbit sleep data. I don’t know how to switch this off. I don’t understand why I’m not getting better when I’ve had reassurances left right and centre that I will.
Everyone tells me how well I’m doing, but I have no idea how I can be doing so well yet my symptoms be getting worse. I must be doing something wrong. I just don’t know what.
Surely I deserve some good. Surely my life should be getting better by now? Going well for me, because God knows I’ve been dealing with this long enough.
I suppose though, in the end, life is a rollercoaster and we’ve just got to ride it… (if I have to have that Ronan Keating song in my head, you do too! You’re welcome)
I think its fairly common knowledge that mental health teams are severely lacking.
I know mine is. Since being told I have psychotic depression and being put on antipsychotics alongside my antidepressants, I’ve had no support apart from a few mindfulness techniques.
Which is all well and good, but the voices are getting worse. I told my team that. I was told it was normal. Nothing about this is normal!
My care coordinator was meant to be phoning me weekly during lockdown. I’ve heard off her twice. Both times because someone else asked her to contact me. Me contacting her myself did nothing. All she does is say we are all in the same position and to try my mindfulness techniques.
I’ve tried them all. Every last one of them. Nothing works. I am sat here devastated that nothing works. I want to find something that helps so badly.
But it just doesn’t. And my mental health team don’t seem interested as, and I quote, “you don’t want to harm the children, so it’s ok”
No. No it’s not OK. I’m not OK.
I turned to forums on the Internet to try and find some support myself. Today I was permanently banned from one. One which I had made numerous online friends from, who were, and some still are through other means, a fabulous support to me.
The forum moderators will not speak to me since I asked for clarification, and they are ignoring my emails, sending snotty, sarcastic replies when they did initially respond, but have since stopped as I told them their behaviour was uncalled for.
A friend has emailed on my behalf. They’ve told her that they’re willing to speak to me. But they’re not. My latest email states that they will not discuss this further with me.
So not only have I lost the supoort of my mental health team, I’ve lost the support of friends I’d found on the internet. People who I really felt understood me.
I don’t know how much more of this I can take. I want to get better. But how can I get better without support? How can I improve my mental health alone? As that is what I’m being expected to do.
I don’t know where to turn to. I don’t know who to turn to. I just keep getting passed from pillar to post.
I’m sorry this is such a depressing post. My blogs are generally full of hope for the future. But right now I have none. Right now I’m worried that my future will not include me getting better. And I’m not sure how to deal with that.