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Sun, 08 Oct 2023 05:50:57 GMT

This is a story abut how living with ME/CFS and MCAS has left me living in the hinterlands of reality. Sorry it's quite long.

Because I can’t work anymore, I recently had to move out of my home in Bristol, and now live on my own in the middle of nowhere in Wales. I have no human contact at all. And so it begins…

There’s a heatwave shortly after I arrive at the cottage. It’s very un-Wales. The days are hot and sticky and there’s no breeze. The cottage has thick walls. They weren’t planning for the extreme weather of the climate emergency when it was built in the 15th century.

The bedroom where I sleep at the top of the building gets unbearably hot. My mast cells are terrorising me. The 4am wake ups, night terrors, nightmares, insomnia, night sweats and sleep inertia are in full force. I dread going to bed.

Each night I lie down in the bedroom oven, and drop off into an precarious sleep, knowing that I’ll soon be jolted awake and consumed with a visceral fear of absolutely nothing tangible at all.

On night 15, there isn’t any breeze but I keep the windows and the thick curtains open anyway. I drift into the liminal space between light sleep and fretful wakefulness. A few hours later I’m suddenly awake.

Sitting bolt upright in the bed. Sheets soaked with sweat. I’m gasping for air. There was a bird in my dream and it was attacking me. Flying at me. But now it’s in the room. Or is it? Am I awake or am I asleep? Is this real?

There's no one to ask. I can hear its wings beating as fast as my heart. Fluttering. I become fully awake and realise that there is actually a bat in the room, swooping and diving over my head.

I let out a weird primordial sound. It’s not a scream but a base, guttural noise that I didn’t know I could make. The bat keeps swooping and doing rounds of the room. I jump out of bed, shut the bedroom door behind me and stand in the hallway.

My heart rate is 180bpm (I checked my watch afterwards). I don’t know what to do. There are night terrors, and then there are night terrors with an actual bat in your room. My head pain is excruciating. My spine and my skull are in flames.

I’m nauseous and my legs are unset jelly. There’s no ambient light out here, the darkness is thick and the air is heavy. My heart thuds in the pitch black. I don’t know how long I stand there for, frozen in the heat, but after a while I realise I can’t hear the bat anymore.

I conclude that it must have flown back out the window it came in. Relieved, and able to exhale for the first time since I woke up, I lie back down in the wet bed (gross, but I am too weak to change the sheets) and re-enter the half-life.

It all seems very surreal the next morning, but I’m grateful it’s over. The next night, I go to bed again and drift of… a few hours later, my mast cells electric shock me awake. I can see the bat.

But that’s impossible because it disappeared the night before and I slept in the room again. I realise with a horrible sinking feeling that it’s a figment of my imagination. I’ve hallucinated before on really bad MCAS terror nights - seen someone in the room.

So this must be what's happening now. I start crying. Because I’m seeing things and that means that whole episode the night before wasn’t real either. I’m so alone. I just want someone to tell me it’s all going to be ok. To tell me what’s real and what isn’t.

Just for anyone to be here. The imaginary bat stops flying, my cursed imagination calms down. My terror subsides to a hollow empty sadness. I eventually fall back into a tormented slumber. My sheets wet with sweat once again, and my face wet with tears.

Dosed up on Benadryl, the next night is somewhat calmer. It doesn’t always work but seems to this time. I do not wake in the night and the next morning, I feel relieved that maybe my hallucinations have stopped.

That evening, I’m watching TV downstairs in the living room. It's dusk… the birds have just stopped singing, the sun has disappeared over the hills. The air is still hot. I’m so very unwell, but I’m fully awake and fully aware. The lights are on. I change the channel.

THE BAT FLIES INTO MY FACE.

I let out the same noise I did on the first night, and run out of the room, heart racing but never winning. I shut the door which has glass panels and can see it doing the same loop pattern that it was doing in the bedroom. So many realisations.

The bat had been real all along. I wasn’t hallucinating. I have been sharing a house with a bat for over three fucking days. In the day times it has been asleep and at night while I have been asleep it has just been going hell for leather flying round the cottage.

And I’ve just been incorporating it into my fucked up MCAS nightmares. I watch it loop and loop, occasionally, it smashes against the glass door and I can momentarily see its face and its teeth and it’s little grey body and silvery black wings.

At least now I know it is real and that it's in just one room of the cottage, which I feel relieved about because I can be sure that it is NOT up in the bedroom anymore where I sleep.

I wait by the door until it’s tired and stops doing the hectic loops, and run in and open all the windows (these ones are much bigger then upstairs), grabbing my phone and turning the TV and lights off.

The next morning I go down with trepidation. It’s light, so the bat won’t be flying anyway. But did it leave??? How will I ever know? For three nights I don’t sit in that room. I can’t cope.

Finally, the local guy who cuts the grass comes to the cottage and I ask him if he can check behind all the curtains in the living room. I’m not usually scared of wildlife, but this bat has completely wrecked me. There's no bat here now, he tells me. And laughs.

And that is how you teeter on the edge of insanity. That is how you end up living with a bat in your cottage for three nights and convincing yourself it’s not real.

My grip on reality becomes more tenuous by the day. I feel terrorised and traumatised by that bat. By the fact it was real and I thought it wasn’t. By what it actually is, and what is represents. This illness, this horrible tormenting illness.

#NEISvoid #MECFS #MCAS #CHRONICILLNESS

Sun, 08 Oct 2023 05:50:57 GMT

This is a story abut how living with ME/CFS and MCAS has left me living in the hinterlands of reality. Sorry it's quite long.

Because I can’t work anymore, I recently had to move out of my home in Bristol, and now live on my own in the middle of nowhere in Wales. I have no human contact at all. And so it begins…

Each night I lie down in the bedroom oven, and drop off into an precarious sleep, knowing that I’ll soon be jolted awake and consumed with a visceral fear of absolutely nothing tangible at all.

There's no one to ask. I can hear its wings beating as fast as my heart. Fluttering. I become fully awake and realise that there is actually a bat in the room, swooping and diving over my head.

THE BAT FLIES INTO MY FACE.

At least now I know it is real and that it's in just one room of the cottage, which I feel relieved about because I can be sure that it is NOT up in the bedroom anymore where I sleep.

The next morning I go down with trepidation. It’s light, so the bat won’t be flying anyway. But did it leave??? How will I ever know? For three nights I don’t sit in that room. I can’t cope.

And that is how you teeter on the edge of insanity. That is how you end up living with a bat in your cottage for three nights and convincing yourself it’s not real.

#NEISvoid #MECFS #MCAS #CHRONICILLNESS

Sun, 08 Oct 2023 05:50:52 GMT

This is a story abut how living with ME/CFS and MCAS has left me living in the hinterlands of reality. Sorry it's quite long.

Because I can’t work anymore, I recently had to move out of my home in Bristol, and now live on my own in the middle of nowhere in Wales. I have no human contact at all. And so it begins…

Each night I lie down in the bedroom oven, and drop off into an precarious sleep, knowing that I’ll soon be jolted awake and consumed with a visceral fear of absolutely nothing tangible at all.

There's no one to ask. I can hear its wings beating as fast as my heart. Fluttering. I become fully awake and realise that there is actually a bat in the room, swooping and diving over my head.

THE BAT FLIES INTO MY FACE.

At least now I know it is real and that it's in just one room of the cottage, which I feel relieved about because I can be sure that it is NOT up in the bedroom anymore where I sleep.

The next morning I go down with trepidation. It’s light, so the bat won’t be flying anyway. But did it leave??? How will I ever know? For three nights I don’t sit in that room. I can’t cope.

And that is how you teeter on the edge of insanity. That is how you end up living with a bat in your cottage for three nights and convincing yourself it’s not real.

#NEISvoid #MECFS #MCAS #CHRONICILLNESS

Sun, 08 Oct 2023 05:50:32 GMT

This is a story abut how living with ME/CFS and MCAS has left me living in the hinterlands of reality. Sorry it's quite long.

Because I can’t work anymore, I recently had to move out of my home in Bristol, and now live on my own in the middle of nowhere in Wales. I have no human contact at all. And so it begins…

Each night I lie down in the bedroom oven, and drop off into an precarious sleep, knowing that I’ll soon be jolted awake and consumed with a visceral fear of absolutely nothing tangible at all.

There's no one to ask. I can hear its wings beating as fast as my heart. Fluttering. I become fully awake and realise that there is actually a bat in the room, swooping and diving over my head.

THE BAT FLIES INTO MY FACE.

At least now I know it is real and that it's in just one room of the cottage, which I feel relieved about because I can be sure that it is NOT up in the bedroom anymore where I sleep.

The next morning I go down with trepidation. It’s light, so the bat won’t be flying anyway. But did it leave??? How will I ever know? For three nights I don’t sit in that room. I can’t cope.

And that is how you teeter on the edge of insanity. That is how you end up living with a bat in your cottage for three nights and convincing yourself it’s not real.

#NEISvoid #MECFS #MCAS #CHRONICILLNESS

Sun, 08 Oct 2023 05:50:30 GMT

This is a story abut how living with ME/CFS and MCAS has left me living in the hinterlands of reality. Sorry it's quite long.

Because I can’t work anymore, I recently had to move out of my home in Bristol, and now live on my own in the middle of nowhere in Wales. I have no human contact at all. And so it begins…

Each night I lie down in the bedroom oven, and drop off into an precarious sleep, knowing that I’ll soon be jolted awake and consumed with a visceral fear of absolutely nothing tangible at all.

There's no one to ask. I can hear its wings beating as fast as my heart. Fluttering. I become fully awake and realise that there is actually a bat in the room, swooping and diving over my head.

THE BAT FLIES INTO MY FACE.

At least now I know it is real and that it's in just one room of the cottage, which I feel relieved about because I can be sure that it is NOT up in the bedroom anymore where I sleep.

The next morning I go down with trepidation. It’s light, so the bat won’t be flying anyway. But did it leave??? How will I ever know? For three nights I don’t sit in that room. I can’t cope.

And that is how you teeter on the edge of insanity. That is how you end up living with a bat in your cottage for three nights and convincing yourself it’s not real.

#NEISvoid #MECFS #MCAS #CHRONICILLNESS