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A really bad day for seizures…

Bleh.

My partner phoned our GP surgery today, because A&E informed us in the complaint that they would electronically send my GP a message telling her to expedite my neurology appt. We hadn’t heard anything, so he called to ask what was happening.

First the receptionist refused to talk to my partner about it, even though TWICE we’ve taken in a signed form stating he can speak on my behalf, and I was actively seizing at the time so couldn’t even speak!!!

Anyway, when we finally got around that she said that there was no message on the system from the ED, and so of course my GP hadn’t tried to speed up my wait for the neurologist…*sigh* ffs, come on 😡

She totally didn’t believe what we were telling her about the ED saying they’d sent a letter, despite my partner saying “I’ve literally got the letter right in front of me!” She kept asking for the date, what it was for, who it was from etc *rolls eyes*

Finally she said we could have a telephone appt with my bloody awful GP tomorrow, ugh…my partner can do all the talking for that, I want nothing to do with her 😥

Also I had my longest seizure ever recorded today, in the midst of a cluster.

1

Complaint & tattoos

PALS have said that they can’t see a referral to a neurologist on my file…which is very odd 😑

The GP sent off the referral 2-3 months ago, so…?

 My partner phoned our GP surgery this morning to ask if there was a referral on the system, but they wouldn’t talk to him…which is just UGH, because when I filled in the registration forms at the surgery, I wrote at every suitable bit that he should be added on the system, I gave consent for him to talk on my behalf, AND I checked with the GP too!!

So now we have to go into the surgery today to ask about the referral, and I’ve written a note that says ” I [name] once again give consent for my partner and carer [name] to talk both on the phone, and to Doctors, on my behalf”. I even included my old and current name and signature, because I’m changing my name on the system today too. 

It’s my birthday in a week and I’m getting two tattoos for it woop woop!

I’m so insanely excited, I haven’t been able to get any new ink in years, because of seizures and what not. I’ve planned these two tiny tattoos so well too haha 🙂

My appt is on Friday, the guy doing them is lovely and I had two of my others done with him. He doesn’t take bookings over the phone anymore as he takes a deposit due to idiots not turning up, so at first we thought we were gonna have to go elsewhere (bit too much to have to travel in to book them, then again for the tattoos). But my partner called him back to ask how long his waiting list was, and when he found out I was disabled he was so lovely and booked us in there and then, no deposit 😃

I also got some new CBD oil to try, and it arrived today. I’m so desperate for relief atm, and the NHS isn’t taking me seriously, so I’m trying a different CBD company in case it helps more. CBD Brothers is supposed to be one of the best in the UK, so fingers crossed!

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Depression, replaced with what?

That awful, all-encompassing depression has gone.

I don’t know what it’s left me with. I can’t tell if I’m manic until I’m really manic, flying high, and my partner’s kinda the same. If I’m hypomanic right now, it’s weak, I can’t tell 😛

I’m hella irritable, I have a decent amount of energy and motivation, and when I’m not flying off the walls in a rage things are going okay. Psychosis still a major issue, but it always is and I don’t count that as an indicator of mood.

I’ve got more things done with my pets today than I did in five days of depression. It’s crazy quite how much your energy levels and capabilities change with your moods. That’s something I wish more people understood.

I wish I could swallow or erase the irritability. It’s SO HARD (read:impossible) to contain it, and it ruins everything around me. I feel so damn sorry for my partner >__<

I get scared whenever I feel like this, I feel like I’m totally ruining our relationship and he’ll stop loving me.

You could argue this is ridiculous, he understands it’s an illness, he’s stuck by me through harder times yadda yadda yadda…that’s true, but it doesn’t mean my symptoms don’t wear him down over time. A bit of irritability might not seem a big deal, but it shows itself as hatred and lashing out verbally, and that’s awful.

On top of that he never gets any respite. I never have okay days, so he never gets any relief. I hate myself for what I put him through.

It’s tough, but we adore each other…that has to count for something.

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Sometimes days can be good

Mostly, this blog is a lot of doom and gloom, because a lot of our lives are difficult and miserable.

Well, today we had a really, really good day 🙂

We went to a kite festival, you can read all about the hilarities and see pics over on the other blog.

Not only was today a good day and we had a lot of laughs and a lot of fun, but I coped really well being out in public too, and at some points we were even in fairly busy areas. A few people even came up to give us advice about kite flying, and I didn’t think ‘shit they’re plotting to kill me’, I managed to respond to a few even!

The past few days have been the roughest since starting on Citalopram.

I don’t know why, but my anxiety has been highest than it has been the entire time, and my mood has been low. I’m still doing much better than pre-Citalopram times, but it hasn’t been fun.

Today, however, has been lots of fun 😉

Savour the good days!

1

Why am I suddenly nocturnal??

My sleep had been regular for weeks and weeks.

It’s a rarity for my sleep to be *so* predictable, I can only remember one other time it followed such a regular pattern in the past few years. For probably around 2 months now I’ve been going to bed between 10-11pm and, although the amount of sleep I’ve needed has varied, bedtime has stayed the same.

That’s pretty phenomenal, and most nights I was even averaging 7-8.5 hours sleep a night, regardless of mood.

Then, all of a sudden and within the past three days, I’ve become nocturnal again. This seems to happen very occasionally (only a few times a year) – it just happens, out the blue.

Last time it happened we were entirely nocturnal, and it lasted for months…bed at 7am, up at 5pm! My sleep was impossible to rectify, and we really did try – then all of a sudden, one night, it just changed back.

We can never pinpoint a trigger (after all, life is always incredibly stressful) and it’s not mood dependent…that is, I don’t just go nocturnal because I’ve gone manic or depressed. It just happens.

It started slowly one night a few nights ago; I wasn’t tired at our usual bedtime, and it was midnight when we went through. I didn’t really think anything of it, it was only an hour or so different.

Then the next few nights, I was going to bed at 2am at the earliest. From nowhere. If I try go to bed earlier, at my usual time, I’m awake for hours and end up incredibly frustrated.

I feel awful when my sleep pattern changes so drastically. It can’t be easy for my partner to adjust alongside…

The past week I’ve been wearing a blindfold in bed, in case I’m really sensitive to light. I think it’s helped a little, especially when I wake up partway through the night or in the early morning. When I first go to bed, instead of it taking me hours to fall asleep, one night I fell asleep in as little as 20 minutes. Last night it still took over an hour though :/

I’ve had to fight for sleep for years now, even if I’m exhausted I have to fight for sleep. It really, really pisses me off. I used to love my sleep 😦

I longingly remember the days when I’d fall asleep as soon as my head hit the pillow…

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When everything goes wrong…

…take Valium!!

This week has been rough as hell.

For a while we have been trying our hardest to work with the rescue puppy that we found tied to a tree over a month ago. We have overcome a lot with her…she started off terrified of the world, and now she is confident with almost everything.

We trained her sit, touch, leave it, lie down, paw, and her name / recall. We taught her to be calm with body handling, and to wait patiently with food. We socialised her with as much as possible. We paid for vet treatment (from the usual puppy costs to medication for her neck and —>), we took her to the vets when it was thought she had broken her leg, we fed her high quality food and treated a UTI.

Throughout all this we were crate training her, and the further in we got, the more signs of separation anxiety we were met with…it wasn’t until the past week we began filming her every time we left, and neither of us were prepared for how panicked she was when left alone.

She loved her crate when we were home, but when we left she lost it completely…frozen Kongs, pigs ears, and calming music did nothing. She *screamed* the entire time, and was panting, lip licking, and just entirely stressed.

To make this shorter, earlier this week we took her to a training facility connected to the rescue we’ve volunteered at since I was 19, and met with a trainer for hours.

The end result was she has extreme separation anxiety, most likely because before being dumped she had only every lived with dogs, and had little human interaction. We found at the facility that she can be left with no issues as long as there is another dog she can physically sleep with (her head has to be on the other dog’s back).

We can’t offer that, we can’t take things slower and not leave her alone…so we had to hand her over to foster. She’s doing well, and is in a home with another young dog, a Collie cross.

That was extremely, extremely stressful and very hard to deal with.

Throughout all that my relationship seriously deteriorated with Gog (all my fault, not his at all) and I was ready to break up with him. I tried to, several times. Lots of arguments on my part, hurtful things said, and tears.

My mood was in the pits and I was actively suicidal, and everything had just gone to shit.

At the end of last week I began sleeping a lot less (from 10 hours to 5 hours) and went manic, but not in any way nice mania, mania filled with psychosis and terror. Constant anxiety.

By yesterday that had eased somewhat, my mood was more low than manic, then today I happened to go on facebook and saw post after post about how the UK was ruined after leaving the EU, disabled people and benefits would be fucked etc.

I had a huge panic attack.

I couldn’t breathe, my heart was racing, and I was crying. I curled into a ball and just shuddered with terror.

Gog came in about 20 minutes later (he’d been asleep in the other room) and I couldn’t even talk to him because I was so scared. I managed to ask for a Valium, and I took 5mg…that’s a lot for me, 2.5mg is usually more than enough.

Twenty minutes later I was lost to the world, but feeling MUCH better.

I couldn’t really talk or focus on anything haha, but I was way calmer. The panic was gone, and that’s all I cared about. The calmness lasted most the day; I took 2.5mg a while back because I was getting anxious again, and today has gone far better than how it started.

My parents are coming up tonight, and I feel anxious about seeing them. For no real reason, just because it’s hard to put on a happy face and act normal when you feel like crap and are very anxious.

Long post, sorry for the ramble.

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Suicidal

Hit me like a ton of bricks.

I can’t live anymore, I don’t deserve to live anymore, this isn’t a life.

I’m screaming and crying on the inside, but on the outside I can’t even talk. I look bored if anything. Gog asks me something; I shrug or shake my head. I can’t talk or let out any emotion, because I’ll break into a million pieces.

I think this is why nobody understands when I’m really ill, because I don’t show it…I’m not sat here in tears, or screaming…I’m blank. Closed off. In the past I’ve told social workers I feel desperate and suicidal, but they saw someone who looked okay and judged me on that.

I wish people understood.

I sat staring at a suicide prevention online chat for over an hour tonight, trying to work up the courage to talk to someone…I don’t deserve to talk to someone, I’d be wasting their time…I finally hit the ‘chat to someone’ button, but all the trained volunteers were busy. I suck at talking to people anyway.

Gog’s here so I’m not in danger, unless I planned and timed it all very well, but I don’t think he’ll leave me alone anyway now. He knows I feel pretty damn bad.

I’m just too tired to talk. I physically can’t get the words out.

I’m extremely depressed. I’m anxious. I have this burning self-hatred and I feel like I’m drowning…I’m not good enough to live. I’m not good enough to talk to Gog. I don’t love him enough. I don’t tell him he’s good enough. It’s my fault things go wrong; it was my fault our puppy hurt her leg. I deserve to feel like this. I don’t deserve help. I’m a lazy, selfish, horrible bitch. I am disgusting.

I’m being worn down. I’ve been worn down.

This blog is so eloquent and I’m such a mess, I don’t understand it. I feel like this blog reads how I look on the outside.

I’m not in danger, that’s not the worry here. I wish it was the worry, I wish I could act on this…not knowing how long this is going to last is possibly the worst thing.

0

banging my head on a wall

When I’m manic like this I struggle in lots of ways.

Something I find hardest is the boredom. If I’m not doing something that is either very active or very involving, I am battling boredom. The instant I stop doing something, I am struck with the most intense boredom.

Now this isn’t just normal boredom. It’s I can’t think or move or talk or be happy boredom. It’s hard to explain quite how horrible this is or how excruciatingly mentally painful it is.

It’s horrible.

And when you couple it with racing thoughts, thoughts whirring around your head so fast you can’t understand any of them so you just sit and you just stare at a wall and you’re bored bored BORED…it’s awful. I don’t think I can explain it right, I think it needs a different word to boredom because it’s…more.

Anyway. I’m struggling to sleep a lot again. Lucky if I’m getting six hours a night, which is actually a lot when I’m this manic…Gog says I am quite very manic. I think I’m more hypomanic.

I was rageous for a week right up to a few days ago. Everything pissed me off and I kept trying to break up with Gog because I thought our relationship sucked and we hated each other and blah blah blah…we’ve been together almost 7 years and we adore each other, so that was fun thinking.

Today we’ve had a great, if active, day. Feel sorry for Gog, he hasn’t stopped once…he’ll be ready for bed soon and I’ll be just there, awake, staring at the ceiling bored whilst thoughts bounce around like pinballs in my head.

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What am I?!

This past week I’m doing better than I have in a long, long time – last time I was this close to good was over 3 years ago.

(I can’t help but wonder if I’m doing better because we have given up trying to get help, so the constant stress of that is gone. We’re putting no pressure  on ourselves & are trying very hard to listen to what my body is saying)

I’m slightly hypomanic, but I am doing good. It is amazing, and 50% of the time I’m actually enjoying things 😀

A fairly other significant chunk is spent worrying and spotting things that *could* be symptoms of an incoming episode:

“Oh god I feel sad about a pet being really ill, am I going to fall into a terrible low?! Oh god I’m stressed as we have no money after the last manic, will it trigger an episode?! Shit I got hardly any sleep last night, am I manic??”

And then I’m also having a few shitty symptoms…I still have this spacey head.

It’s been going on about two or three weeks now, but we thought it was because I had been taking just one Codeine on an almost daily basis, to deal with physical pain – when I took three Codeine we thought the really bad spacey head I had that same day was a result of that.

I haven’t had Codeine in six days, and the spacey episodes continue…

Out the blue I get lagging vision, feel the entire world isn’t real, I feel pressure behind one eye sometimes, I can’t think / talk / focus on more than one thing at once…so if watching TV I can listen to what the characters are saying, but I can’t watch it at the same time, or process it. If I’m thinking inside my head I can’t concentrate on anything else.

These episodes last 1 – 4 hours, and they freak me the fuck out.

They’re different than anything I’ve experienced before, the closest I can remember is when I don’t believe the world is real, a psychotic symptom, or when I feel absolute terror and dissociate.

It’s been happening 1 – 3 times a day usually to the point where I can’t do anything for several hours…and it IS scary. (don’t think it happened badly yesterday though)

Because I also have a lot of health anxieties (anxiety never sounds strong enough, it’s terror) it has me so scared I have a brain tumour.

I keep thinking a lot about dying, getting sick, my partner and dogs being left alone, not having enough time with him or making the most of it…it’s extremely scary and I cry a few times a day through fear and sadness.

My partner is being awesome at being supportive and reassuring me, and we can go to the GP to check…but I’m scared about that for several reasons:

  1. As I said I’m doing well now, and as appts are terrifying for me one simple GP appt could easily trigger a bad episode
  2. We might have to get further help, further stressful investigations (blood tests, scans etc), and that would most certainly trigger an episode
  3. What if the GP didn’t take me seriously? What if they said it was just a symptom of my MH, and something is actually seriously physically wrong?

The last point really scares me, and it’s something a lot of people without mental illnesses don’t understand.

If you go to the Dr with physical symptoms and you also have a chronic / serious mental illness, it’s almost always blamed on your mental health.

Tight chest, headaches, neck pain, back pain, rapid heartbeat, constant hallucinations…these are all things that have been blamed on me being Bipolar, with no further testing.

I just want to be taken seriously. If a ‘normal’ person went in with these new symptoms (and they are new to me too) they would be taken seriously…whereas for me we’ll probably have to fight for that right.

0

Hello old friend

**self-harm triggers, nothing graphic but treat yourselves gently**

Another really shit day today.

Had a moment on a walk with our youngest dog where I just tilted my head back, looked through the trees at the blue sky, and just enjoyed it. Gog asked what I was doing, and I said “Right now I feel like I’m actually enjoying this, so I’m making sure to remember it because I know it won’t last”.

It didn’t last, but it was nice right then, right there.

I self-harmed for the first time in a long time today, the last time I self-harmed was probably over a year ago.

I first self-harmed when I was about nine years old, and between ten and twenty I self-harmed fairly regularly…from banging my head against walls to cutting myself to breaking bones, I used it as a coping mechanism. Self-harm has never been an addictive or worrying behaviour for me, rather it’s a tool that – if I need it – I will use.

After about twenty I just didn’t seem to do it as much, maybe because around that age I started dating Gog…he’s a legend 🙂

I’ve never been particularly worried about my self-harm, and neither has Gog. He was scared by it at first, but over the years we’ve come to accept it for what it is – it’s helped us through some very tricky times.

Today I was filled with anger, alongside the low mood. I was literally trembling with rage, and I was getting really cross at Gog.

I’d say “I can’t do this anymore, this isn’t a life!” To which he’d respond “I know, you’re right”, and then I’d yell “Then how can you make me live?! This is mental torture!”

I spent several hours trying to work through it or find solutions…I tried colouring, listening to loud music, walking a dog, writing down how I feel, sitting with my rabbit, watching my new sensory things (I’ll post about these later), blogging, eating…nothing was helping at all. The anger was building and so was the desperation.

So I self-harmed.

I didn’t think it would help, the idea of it wasn’t comforting…then I did it and I feel so, SO much calmer. You cannot understand how much better I feel 🙂

I was at rock bottom…now I am not craving suicide, and I’m not hating the world. Am I depressed still? Oh yeah, everything is a huge struggle. But I am here, blogging, and I’m not crying with misery anymore.

A lot of people can’t understand self-harm. I know a lot of people who hurt themselves describe it as ‘an addiction’ – something that gets worse and they need to do it more and more. As I said, it’s never been like that for me. I will use it every now and then, when I need to, but it’s a last resort and I don’t mind it at all.

I’ve had friends and professionals tell me not to do it…most don’t listen to my explanations (I had one social worker that did, and then agreed for me it could be a useful coping mechanism), in fact they usually say “think of yourself in the future, having to hide your arm forever because of scars!”

Well, I’ve been doing that since I was 14 anyway! I learned early on that self-harming came with repercussions, namely never being able to wear short sleeves around anybody, no matter how hot the weather is.

I’ve managed that for a dozen years now and it’s fine – annoying, yes, but I can live with it.

It also helps that Gog is someone I am 100% comfortable with, and who I can wear short sleeves around. It’s nice to wear short sleeves sometimes 😉