At the beginning of September I had my regular appointment with the rheumatologist.
This time I was diagnosed with fibromyalgia.
This has triggered another change in my medication. So now I’m dealing with the effects if changing, including a much reduced appetite. Not exactly a bad thing!
It seems though that my list of things wrong with me grows every time I see someone about the pain I’m in. I have an appointment with the pain clinic in a couple of weeks which will possibly mean another change in medication.
I’m just at a bit of a loss really at the moment as I try and get my head around the fibro diagnosis and how that fits with all of my other disabilities.
As the title suggests, I’m struggling with paranoia, anxiety and delusions.
I’m scared to leave my house alone, I’m afraid of the man with the gun.
It all started with a throwaway comment from the lollipop lady. I was taking the children to school and she asked if I’d heard the helicopter during the night. I said I hadn’t. She then told me about the rumours that there had been gunshots.
That rumour has sent me into a spiral where I feel like I’m being followed, I check over my shoulder, I look up trees and behind bushes, I just can’t can’t that feeling.
When I’m in the house I’m able to think logically about it. I can sit and say to myself “why would anyone want to harm me?” And the answer is, they wouldn’t.
But when I’m out, that fear takes over. I become convinced that there’s someone there. That they want me dead. That I’m going to get shot. But the man (it feels like a man) won’t shoot me if I’m with someone. So I’m safe with other people.
But that doesn’t stop the feeling of being followed, like he’s waiting to get me on my own, waiting for the perfect opportunity.
I’ve spoken to my care coordinator about it and she’s speaking to my psychiatrist for me on the hopes tinkering with my meds will ease this for me.
Until then I’ll have to find other ways of dealing with the thoughts. I just don’t know what…
As its England v Denmark tonight I’d like to remind people that if England lose so will many many women.
They’ll be beaten and attacked by the men who are so angry over a game they take their frustration out on the women in their lives because they can. No reason other than that. They can.
Be it their spouse, partner, sister or daughter, violent men will disproportionately take out their anger on women.
This is the reality for thousands of women. But it’s just seen as normal and acceptable that we be treated this way. Lots of people try to excuse mens shitty behaviour by blaming it on alcohol, or saying that tensions were high because of the game.
But this can’t keep being excused. Men need to take responsibility for their actions, their temper and their behaviour.
I’m lucky. I’m no longer with the man that would have done that to me. But many other women aren’t as lucky as I am.
So tonight I’ll be desperate for England to win. Not just because I’m English, but because I feel sick to my stomach knowing what those women will endure if we don’t.
Today I had an appointment with my lovely new care coordinator. It couldn’t have come at a more appropriate time, as yesterday I lost a friend.
We met due to both of our daughters having selective mutism. Despite its name, SM isn’t the child choosing not to speak, its an actual inability to speak I certain situations. It’s a severe anxiety disorder and some people are affected more than others.
We got incredibly lucky with Bernadette as she has taken to speech therapy well and is now able to speak in most places, albeit only to me when she’s somewhere unfamiliar, it’s still incredible progress.
My friends daughter suffered more with it. My friend and I would meet for coffee or to let the kids run around in the park, we were both the same age and our kids got on well. But life is cruel and unfair.
She collapsed at home on Sunday. They rushed her to hospital where it was discovered she had a brain aneurysm. They attempted to clip that aneurysm yesterday, but unfortunately she passed away during the operation.
And I feel so strange. I feel like the world should have stopped. But it keeps on turning around. I feel like everyone should know how such a lively, amazing woman was taken too soon, but of course they don’t. They go about their lives, not knowing the tragedy that has affected a family and friendships.
We were texting less than a week ago, arranging plans for the summer. We were going to have coffee while the kids were at school, and during the holidays we were planning a beach trip.
But all that has been so harshly brought to a halt. Our plans will never come to fruition. And it just feels so unfair. I can’t fathom how her family must be feeling.
I guess I’m lucky in a way as I have a team around me to support me through this. Her family don’t. They’re trying to deal with this devastation by themselves.
I have written a poem for her funeral, her mum is going to read it out as they’re having a family only service, but still want her friends involved. So others are writing notes to put in her coffin and I’ve sent the poem, and will light a candle in her memory on the day of the funeral.
"So suddenly left, Feeling alone. It's scary to realise, You won't be coming home.
I look to the stars, Shining in the sky. I didn't want to lose you, Don't want to say goodbye.
I tried to hold on to you, And you tried as well. No one could have predicted, The tragedy that befell.
Goodbye my darling angel, My precious guiding light. I'll look to the stars and think of you, Every single night"
It seems strange to consider life going on when hers was so abruptly stopped, but I must look to the future. She would have hated the thought of me wallowing. She was always so upbeat and always managed to make me smile.
So going forward that’s what I’ll do. I’ll smile for our friendship, all that we had and all that we should have been able to do. I will hold her memory dear to me and I will move forward in life as she would want me to.
I’ve had a few people ask me what is BED, so I thought I’d do a blog post about what it is and how it manifests for me.
So to start what is BED? Well, it’s binge eating disorder. It’s often seen as nit a real eating disorder as the sufferers are often overweight or obese.
Unlike those with bulimia, those of us with BED don’t tend to purge after a binge. So there’s no throwing up, there’s no trying to burn off the calories through exercise, no taking laxatives.
We just binge. Which people see and think we are greedy. But the truth is, while bingeing, we have no control. We lose ourselves in that moment and we don’t control how much we eat or what we eat. Out urge to binge overpowers us.
For me, I eat and eat until I feel sick. There have been times I’ve been sick because I’ve eaten so much, and then I’ve eaten some more.
It’s not something I choose to do. No one would actively choose to binge to the point of vomiting.
But it’s a very real and very serious mental health issue. I’m currently, at the time of writing this post, 4 days since my last binge. That may seem like a tiny amount of time. And in the grand scheme of things, it is.
But for me this is a big deal. I got to the point I was bingeing most nights, and I’ve gained a ridiculous amount of weight.
I’m now trying my best to lose the weight in a healthy way, and to recover from my eating disorder. So every day where I stay in control is a massive positive for me.
I’ve been accessing Beat eating disorder website resources and chat rooms for help and support, and I’ve self referred for CBT to try and help me with the urges and the loss of control.
So to sum up quickly, BED is an eating disorder. Eating disorders can affect anyone regardless of their size or weight. They are serious mental illnesses and need support not judgement.
It sounds such a strange thing. But when the hallucinations appear, I read my lists and they help to keep me grounded, so even if the hallucinations don’t go away, they don’t seem as bad.
So far I have lists of what the noises around my house could be, a list of positive affirmations (I’m open to more of these if anyone would like to help add to my lists!) A list of all the things I need to do before I go to bed at night, a list of things I enjoy doing so I can try each thing to keep me calm, and a list of things that make me happy.
Lists prove to be rather effective. Such a simple task to write a list, but its power to help me is immense.
I’ve still not heard off my new care coordinator but I’m hopeful I will soon then we can arrange a regular appointment. I’ll give it while Monday then get my mum to phone and find out what’s what, as the more regular appointment I have been having with the manager while waiting for my new CC to take over have really helped too.
I like knowing that whatever is on my mind I can get it off my chest at a specific time and specific day. It’s good to talk to people and I even have lists of what I need to tell them, so new hallucinations, new voices etc etc.
So for now I’ll leave you with lists! Write them, read them, add to them. List everything. Believe me, it helps.
You know the one. Just as you’re drifting off to sleep, the Black shape that shifts and mutates in the darkness ti become something terrifying.
It’s just your imagination, you tell yourself. But what if its more than that. What if, even when you’re hiding under the covers like a child, you could feel it touching, grabbing at your legs with its long, talon like claws.
What if you could hear it breathing, feel it’s overwhelming presence all around you. What if you knew that if you looked at it, you’d see it’s grotesque grin, curving the edges of its mouth and revealing sharp teeth.
Thats what I’ve been dealing with.
Then last night, the monster appeared in my living room. Somewhere it’s never been before. It was under the desk I keep my mouse cage on.
I’m not sure how it was able to fit, as it’s huge, with wings, but fit it did. It’s body contorted into the darkness, its joyless grin peeking out at me, the sound of its breath as it breathed heavily. Watching me. Waiting.
I was terrified. But I know that monsters aren’t real. I know that.
I’ve recently been diagnosed with binge eating disorder. I’m on the waiting list for therapy, but in the meantime, I’ve to find support elsewhere.
I’ve contacted beat and There’s an online support group every Tuesday. But im reaching out for support elsewhere as I’m struggling. I’ve gained a lot of weight and I’m now 19st.
I binged yesterday. To the point I felt uncomfortable. I hate myself so I eat, the more I eat, the more I hate myself. It is a vicious cycle of abusing my body and punishing myself for my perceived inadequacy.
It’s a form of self harm. Hurting my body, punishing it. My body isn’t how I expected, my body has let me down in various ways.
But I need to start looking at what’s good about my body. What my body has achieved.
It grew 3 amazing children. It gave birth to those children and I’m still alive. It keeps me alive by pumping the blood around me. It fights off infections, albeit not very well, but it tries!
My body doesn’t deserve punishment. It deserves love and respect for what it’s been through.
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.