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Migraines + headaches

Ugh.

So when I was having really bad psychosis outside of a mood episode, it obviously caused me A LOT of anxiety, and this caused numerous headaches just from stress. Then factor in that the constant adrenaline meant I became light sensitive, and using a lamp indoors or walking outdoors on a normal, not sunny day, also caused headaches…and it wasn’t a good time 😛

Since going manic around three weeks ago, I have had no headaches.

My anxiety has almost all gone, even though I’m still hallucinating, because I feel confident and good and happy.

But now the lack of sleep is starting to affect me :/

For the past three weeks I have been getting anywhere between 3 and 8 hours sleep, averaging I’d guess about 5 hours a night. I normally sleep for 9-10 hours a night, so after 3 weeks I’m running on one hell of a deficit now!

I started off for the first week getting around 6-7 hours sleep, for the second I had 3-5 hours sleep, and for the third I have a couple of nights with 2-4 hours sleep and then seem to get a nice night’s sleep lasting 7-8 hours.

Today it caused a tired headache, migraine, whatever it was. I started off fine and then out of nowhere got hit with a crippling headache. We came home, I took some Codeine & Ibuprofen, managed to sleep for four hours, and when I woke up I just had a niggling headache and felt nauseous.

Thankfully in the hour I’ve been awake that has faded too.

Ever since I started having psychosis outside of mania (used to be the only time I’d have psychosis) I’ve really noticed the toll it takes on my body…

I was having lots of headaches, usually one a day, and at least one migraine a week. My back hurt and my neck was extremely sore. No matter how I sat, slept or held myself, it hurt, and then my neck pain would inevitably lead to a headache!

Nothing has changed since then but, up to today, I’ve had no pain in mania.

The body is a strange thing…

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Mania’s not always fun

I’ve only been manic 17 days so far, it could last a lot longer, but I am *so* done with it…

The lack of sleep is becoming an issue.

My partner is missing sleep, because he is my carer and has to be awake to make sure I don’t spend all our money (why yes, I am an impulsive dick, thank you!), but the lack of sleep and being constantly on the go means he gets tired by about 7pm in the evening.

I get really frustrated because I don’t ever want to go to bed, and if he’s having a cat nap I have to agree to stay still and do one thing (ie. listen to five songs on the Ipon whilst colouring and he should be awake by the time they are finished) and it’s so hard for me…Gog has a really hard time reminding me and getting me to understand that he is not manic, he gets tired – it is ME who is having unusual amounts of energy, not him who is unusually sleepy!

I told someone else recently, I suck at empathy when I’m manic >__<

I had a really crap night’s sleep last night, about four hours and I haven’t slept properly for several weeks now, and I don’t understand it…yesterday was my most un-manic day in 17 days, so why have I woken so zingy and manicky today?!

I rated yesterday a 6 for my mood (0 = suicidal, 10 = manic & psychotic), a 7 for feeling calm & relaxed, and a 7 for being able to sit still. These are significantly calmer than all the other 12 days on my mood chart.

Seventeen days where the most I have slept is seven hours, and I usually fall in around 4-5.5 hours. I am going to have missed out on so much sleep and be so exhausted by the time this ends, and it infuriates me!

I’ve also spent way, way, waaaaaay too much money 😦

I’ve managed to blow several hundred pounds, and we only just built our funds back up after having nothing. FUCK.

Even my partner having our bank cards doesn’t help because I find things to buy online when he is out the room or napping…I’m so certain it’s a good idea and I NEED to spend money – I really wish the automatic saving of details on sites such as amazon and ebay didn’t mean I could buy things so easily, I never used to know how to do it…

My partner is gently trying to get me to agree to have the sites blocked on both my laptop and the PC, so I can’t buy things as only he knows how to block / unblock them, but I love looking for stuff that interest me. Finding cool dog toys or training tools on amazon / ebay is one of the few things I can focus on, it’d suck if it had to go because I’m an impulsive idiot…

I just want to start an anti-psychotic that could a) get rid of my psychosis, and b) help me calm down and reduce my mania…please NHS help me for fuck sake!!

I can’t believe the nearest GP appt I could get was the 11th March – and that was booked over a week ago. I’m sat here, skin twitching with agitation, and I could cry with the frustration of it all *sigh*

People think mania must be so enjoyable…news flash: it’s not!

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Hallucinations or agitation, which is best?

I was only taking Abilify for about a week.

It did several good things:

  1. Calmed my hallucinations – didn’t get rid of them completely, but it did calm them
  2. It really helped with my problem of sentences vanishing, words getting plucked from my head etc – it was wonderful, I could think and talk!
  3. My thoughts returned to a normal speed…previously my head was such a tangle that forming sentences took what felt like years because everything was a jumble

However, it made plenty worse, and they all tied into each other:

  1. Agitation – I was bouncing of the walls
  2. The ability to sit still – I was bouncing off the walls; even when I forced myself to sit still the symptoms were akathisia-like
  3. Concentration – I couldn’t read, colour, or sit still for any length of time
  4. I forget it, damn… *edit* ah remembered!

    I had to be moving all day everyday. I was close to this anyway with the mania, but I could spend a few hours colouring or doing something else…on Abilify I had to be up every hour that I was awake; moving furniture, cleaning the house, cleaning pets, walking the dogs, going on days out, looking for things to build or bake or buy…!

I’ve been off the med about three or four days, I don’t remember which, and it’s insane how much things have changed…

  • My hallucinations are back, and obviously getting worse as days pass. Yesterday was the worst so far, and in just over half an hour I had four visual hallucinations, three which were terrifying

(funnily enough I have heard barely any auditory hallucinations)

 

  • I lose words mid-sentence dozens and dozens of times a day. Not only is this incredibly annoying, but it’s embarrassing with anyone but my partner too

 

  • When my brain is losing itself it snatches up other words, and the things I say don’t make sense…this is incredibly frustrating because I KNOW what I want to say, I just can’t!

    For example I might say, “I a lot miss you very much”, or “Can you catch me the hat downstairs?” Instead of ‘can you bring me the hat downstairs?’ It’s horrible.

 

  • My thoughts are such a web it’s hard to extract the right things I want to say, so sometimes I can easily picture what I want to say but finding the words is tricky, and extracting them in the right order and organising them into what I want to say takes a long time. During conversations it might take me a full minute to respond to a question.

 

  • It’s not all doom and gloom though because my energy is much lower today and somewhat calmer

    I am still manic, but it isn’t as intense as when I was taking the Abilify. The agitation (somewhat similar to anxiety but more ZING!) is gone, and I am able to read, research stuff, and colour again 🙂

 

  • For the first time in 3.5 years I AM WRITING FICTION AGAIN!!

    Writing was my all-time favourite hobby, ever since I could write I did. Story after story after story, sometimes I’d be working on almost a dozen at the same time!!

    Then, not long after I started taking Seroquel, I totally stopped being able to write. It was so much worse than writer’s block.

    For the next 3.5 years I didn’t write any fiction; I tried but couldn’t, and I was devastated. I began blogging more, and got enjoyment from that, but it wasn’t the same.

    About twelve hours ago I began writing my first fiction in such a long time, and amongst sleep I have written six pages now – I am loving it 🙂

Ugh, even writing this is tough as I keep forgetting what I want to say and my thoughts are a knot tied to each other!

So yeah. Oh, and still no help from the NHS.

Gog has made me an appt with the GP, but I have to wait three weeks because my GP was off for a month, and the wait to see anyone else was almost as long :/

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Mohican

After he got over the shock of me cutting all my hair off, Gog helped me fix it.

When I’m manic I don’t think, I act on impulse. I also don’t give a shit how well I do whatever I impulsively do haha. Act first, think later.

This meant my mohican had bald patches, it was wonky…it was terrible, but I obviously loved it because yay mania!

My partner bought some strimmers in and fixed it up, shaving the hair shorter to fade the patches.

I love Gog so much ❤

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You know you’re manic when…

 

  1. You can clearly see your sleep diminishing every night, until you’re sleeping less than a 1/3 of what you usually do
  2. You really want to do something (read a dog training book, play a video game, colour) but can’ t because you can’t concentrate or sit still enough – those things aren’t ACTIVE enough for you!
  3. You go from blogging / posting on the internet once every few days to several times a day
  4. You trawl the internet for something, ANYTHING, that will hold your attention (eg. I just discovered Pinterest today…nothing better than being able to search for pics of absolutely anything and be able to actively scroll through them all!)
  5. You are so irritable it scares you. A lot. But whatever annoyed you is forgotten about within seconds.
  6. You decide to bring home yet another pet, and although you know s/he will be looked after for life, loved, and live in the lap of luxury…you are aware the reason you want her so-so-so-so-so much is because your mood is elevated (I had previously promised to wait a few months before bringing this pet home)
  7. You just. can’t. stop! You’ve  moved furniture, tidied, walked the dogs, cleaned & fed the pets, been shopping, tidied more etc etc
  8. You cut all your hair off and given yourself a mohican. Yep, just happened. Ooops.
  9. Your partner is having to take several hours nap a day purely because he can’t keep up with you and your energy
  10. You’ve been physically on the go for 14 hours, have barely sat down, but do you need sleep? HELL NO, NOT FOR HOURS!
  11. When you fill in your mood chart you can clearly see that, in almost every way, your mood is climbing higher & higher…and it makes you smile, because you haven’t felt this good in over a year 😀
  12. Writing this blog is sapping too much concentration and you need to get up and go, so you end it even though there are lots more points you could write…

Woohoo, mania!

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Mood mapping / chart for Bipolar

Anon writing this 🙂

I’m still fairly manic, but since we started taking a fairly small dose of Abilify, I feel much better…I can think, I can concentrate on most things, and although I get distracted fairly easily it’s not hideously bad.

Plus I’m not bouncing off the walls and talking so fast Gog has to remind me to breathe 😉

We still haven’t heard anything from the NHS ( = good for me, I don’t want to see a psych!), which means I’m taking the Abilify without a medical professional knowing…but they haven’t offered us any help, and I took Abilify for a long time. I *know* it helps with psychosis and mania, it’s just the depression & shitty side effects that meant I couldn’t stay on it.

Anyway, I have been looking for places where I can chart my mood / symptoms. Preferably this would be online, as I barely use a mobile phone. I found a few, but none that really clicked with me.

The closes I got was one through the DBSA, but I still found it hard to use, confusing, and it wasn’t exactly what I wanted.

This is where Gog came in!

I am not good with technology; Gog is. He created a *brain blank* nooooo! My brain has lost what it was saying – agh! This is one of my most annoying symptoms…shit. I’ll just show you the photos. Maybe the word will come.

Click to enlarge the photos 🙂

So it has the date (you can easily add a few entries for the same day, too) and then you mark each column out of ten, or whatever number you choose.

The first is marking your mood (for me 1 = suicidal, 10 = manic & psychotic). Next you rate:
Calm and relaxed
Sleep
Hopelessness
Anxiety
Sadness
Suicidal
Irritability
Impulsivity
Racing thoughts
Concentration (ability to concentrate)
And there’s an extra bit to add notes to.

I love this! It is so much better than any I have found online and Gog says he can easily turn it into a graph too, so you can see the ebb and flows. I’ve only been using it two days so far, but I’ll try keep up with it 🙂

Also, he says he thinks he could make it so that other people could download (?) the layout and use it themselves.

Or feel free to create something similar, and choose your own score system, headlines and colours!

**edited to add** Spreadsheet! That’s the word I lost!

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Advice to MH medical professionals

This is a list that me and Anon came up with some time ago.

We plan on writing / printing it out and taking it with us whenever we are assigned somebody new to our case, who we would see regularly…a social worker for example. It’s a list of things that we think would be helpful for us, and pointers that we think professionals need because they are consistently doing things that don’t help, make things worse or stress us out

1) Be gentle and supportive, instead of clinical or patronising

 

2) Be someone who we would like to talk to; talk about ‘easy’ things, even if it’s just for a few minutes at the start of an appointment (eg. talking about pets)

One of the things Anon struggles with most is that the instant she enters the room with a social worker / psychiatrist she has never met before, she is asked to tell them about the most vulnerable and scary parts of herself 

 

3) At the first appointment, establish if there are things that we don’t want to talk about. Either things we never want to talk about, or things we will only talk about if we bring them up or if we are doing well.

 

 

4) Listen. Be open to the fact that your interpretation could be wrong and we might not feel able to correct you. “Is that right?” “Have I got that right?” “Do I understand correctly?” would be helpful.

 

5)) Believe that we are not over-exaggerating. Anon saying “I am suicidal” means she actively wants to kill herself, not ‘I am feeling a little blue today’.

 

6) Talk to us like we are real people – because we are! Yes, one of us might be very ill, but there is no need to look down on us, talk over us or act like we’re dirt on the bottom of your shoe.

 

7) If you say you will get in touch with us on a specific day, make sure you do. We depend on you for help, and not getting in touch when you say you will only heightens our feeling of loneliness and means we lose a huge amount of trust in you.

 

Anon is still very manic, she’s only creeping higher…every morning she seems more intense, then she calms a little during the day, and it seeps back at night.

Still waiting for help. Still heard nothing from the NHS.

It will be a week tomorrow since they tried, once, to get in touch with us. We can’t phone them back.

Still don’t know where we can get help….

#InTheMind