0

I hate this illness

There are quite a lot of people who seem to like their Bipolar, or at least appreciate having Bipolar in some ways. They list positives.

I am not one of them.

I hate having Bipolar, I hate being Bipolar…sometimes people make a big deal out of the whole ‘I have Bipolar / I AM Bipolar’ thing and I really don’t care either way. I also tend to call those with Bipolar sufferers, as in ‘people suffering with Bipolar blah blah blah’…and that’s because I suffer a lot.

I find it hard to understand that where I suffer so badly others can somehow feel grateful for these symptoms. Some people with Bipolar can lead productive lives and I can’t even leave the house on my own…I don’t think it helps that I don’t know anyone else in real life with Bipolar, so I have nothing to gauge it on or anyone to talk to.

Sorry, going off on a tangent…

Today I’m compiling a list of MY Bipolar, of reasons why I detest it. Hopefully I can even think up a few reasons why I don’t mind it. We will see.

REASONS WHY I HATE BEING BIPOLAR

1I haven’t had a stable episode in over two years

Yes, you read that correctly. When I first began experiencing symptoms of mania, and thus Bipolar, I was nineteen. I’d suffered with long bouts of severe depression for years, but these high episodes were entirely new and I didn’t understand them at all.

I used to have a long, dark depressive episode followed by months of stability. Then I’d have a manic episode, which would only last a week or two, then more stability. And repeat.

Gradually this got worse; not only did the episodes increase in severity but the manic episodes began to last longer, now usually over a month long. I also began bouncing from one to the other; a mania was almost always followed instantly by a black depression, or sometimes the lows preceded the highs.

By the time almost four years had passed after my first manic episode, the stable times were virtually nonexistent. It would go: five month depression, two month mania, six month depression, three weeks stability, seven month depression…over and over and over. The stable points were there, but barely.

Then we hit the last two years. I haven’t had any stable periods, I think the longest was three days in a row where I felt okay. Some days recently my mood isn’t so bad, but I still have the psychotic symptoms.

2. I can’t hold down a job. I can’t even volunteer anymore.

I haven’t had a job in years. I did a little time dog walking, but even walking two dogs a week was incredibly difficult. If my sleep was a mess it made it impossible, if I was low I had no motivation and couldn’t go out alone, if I was manic I couldn’t focus.

I’ve volunteered in many places over the years…animal shelters, sorting items at charity shops, helping out at summer camps for disadvantaged kids etc. I can’t do it anymore.

We found an animal rescue centre where we could walk dogs that didn’t require a schedule, you could roll up whenever you wanted – this seems to be rare with volunteering these days. But I just can’t do it; my mood episodes are too severe and the hallucinations make me jumpy. I don’t trust myself to walk rescue dogs – what if I saw a hallucination and freaked out, dropping the lead?

3. I can’t drive

My Bipolar is classed as being too severe to drive, and I can’t imagine the hallucinations would help…

4. I can’t go out alone

I can’t go out alone unless I’m stable, Doctor’s orders. If I’m never stable when do I ever get to go out alone? Sometimes it’s just nice to go out for a walk on your own, or take a dog out by myself. Sometimes you don’t want to walk and talk, you just want to pootle along and think things through.

5. I am constantly in a state of desperation or mental torment

None of this is fun. Being so low you’re constantly crying or contemplating suicide isn’t fun. Being so high you think you need to build a time machine or the world will end is no fun. Seeing hallucinations constantly is terrifying. Not being able to sleep no matter what you do sucks.

6. People don’t understand

When I talk to family or friends they don’t get it, and my experiences / feelings make them feel awkward. Often when they do try to listen and support me they say the wrong thing, such as my hallucinations sound “cool”.

7. Sleep, sleep, sleep

I hate my sleep. I’m either sleeping too much, not enough or not at all. There’s nothing worse than lying in bed, staring at the ceiling, and just knowing you’re not going to sleep for hours whilst your partner snores beside you.

8. I’m supposed to take meds no matter how much they terrify me

Professionals and parents are constantly trying to bully me into taking various meds that I am not comfortable with, at all. The main ones are Lithium (just no), Lamictal (apparently I’m being ir-RASH-ional…sorry couldn’t resist) and Zyprexa (I gained enough weight on Seroquel thanks).

When I calmly explain that I have health anxiety and am not comfortable with those meds I usually get one of two responses. The first is the whole ‘well you’re going to have to just try it, not everyone gets those side effects – you won’t know until you’ve tried!’ Uhuh, and if I end up being one of those rare, oh so special people who end up with a lifelong illness, disfigured, or dead – what then?

The second response blames my Bipolar for me even worrying about this. That is unhelpful, I’ve worried about health stuff since I was in my early teens, and quite frankly I don’t appreciate you blaming my illness when I’m telling you it’s not that. I think a fair number of people would fret over taking such strong medication with such serious side effects.

9. Nobody listens or takes what I say seriously

Over time I’ve come to learn how to express my feelings and I’ve been more open to telling people how I feel. This is especially true in a depressive phase, and if I am worried about how much time I am spending contemplating suicide I will tell people.

I have found that every professional I tell this to turns a blind eye, other than my last GP. Even when we have had to go to A&E after an overdose the staff there have no interest once they have assessed that Gog will be with me 24/7. If I broach this subject with family I am met with a disbelieving “give over” and then a hasty change of subject.

10. Everything I do is because of my illness

This bugs the hell out of me and mainly relates to my parents. Anything I do, their immediate reaction is “are you manic?”

Cutting my hair short warrants the question “are you manic?” No, I just fancied short hair again, it’s so much easier…God forbid if I’m happy and chatty and joking about when we meet them. In the summer we bought a puppy & the first thing they said was “are you manic?” No, we’ve been on the waiting list for several months…

Not everything I do is down to my Bipolar, I do have a personality too you know. The funny thing is they’ve never even seen me when I was hypomanic, never mind manic.

11. The easiest things are impossible when I’m depressed

A lot of people don’t understand this. I don’t just mean cleaning the house or walking the dog (although I’m really not able to do those when depressed) I mean getting myself out of bed, having a shower, getting dressed, brushing my teeth, cooking food. If it wasn’t for my partner I’d either not eat or live off dry bread when low.

It’s not laziness, it’s so much misery and self-hatred that I’m rendered useless. More useless than usual that is.

12. I’m a danger to myself

Another thing most people can’t get their head around, I really could wind up hurt or killed in an episode. In a depressive episode this is more obvious; suicide and self-harm.

When manic it’s harder to understand, but what with my impulsiveness, the belief that I’m invincible (I have tried jumping off buildings and in front of cars to prove this before), my forgetfulness (leaving candles burning, leaving our old gas cooker on) and black outs where I can’t remember why or where I am…it’s not good.

13. I have to wear a stupid medic alert band 

It was my old care co-ordinator’s idea. I have a band which has Gog’s telephone number on and tells people to ring him. On either side of the number it states I have Bipolar and suffer from psychosis. I have another medic alert band that’s a memory stick and holds lots of info…diagnoses, meds, my address, Gog’s name, my GP’s name etc.

I find it highly embarrassing that I have to wear this, and try to keep it hidden under my sleeve in public. I especially hate it when I forget to take it off when meeting my extended family. Awkward.

14. People keep telling me what’s good for me and what will help

See previous post here.

15. People tell me I am lazy / having an easy ride / am lucky because I don’t have to work

Yeah, piss off, you have no idea.

16. I look like an idiot when I talk to people

If I’m manic I really do look like an idiot. Talking too fast, jabbering nonsense (one time it was that the wind blew open my book to page 19, which showed the aliens were going to invade in 2019 and I had to build a time machine before them…oh god, that poor person). And then I get irritable when they don’t agree or seem to be listening!

Otherwise I have this thing where it feels like words or sentences are plucked from my brain, and they’re gone for ever. It will happen when I’m in the middle of saying something, the words just vanish…I’m just stuck, looking like a moron and not having any way to continue talking.

17. Medication side effects

I’m supposed to take these meds day after day and only stop when the professionals say I can…but why the hell would I when they don’t do shit for my mood and they have horrific side effects?!

I had severe akathisia for 2.5 years before they took me off one anti-psychotic. I never got used to strangers mimicking my twitches and rocking, commenting on how ‘lively’ I was or asking Gog if his ‘lady friend’ was okay…

18. I spend money I can’t earn

I hate being manic. We never have much money, but we get buy. We have very little money coming in but because of this we’re also careful to have very little money going out. Unfortunately this all goes to shit when I’m manic and in the past (before Gog had complete control of our credit cards) I would easily spend £1000 in a manic episode. We never have much more than that to our name!

19. As if it’s not bad enough people think I’m lazy, EVERYONE thinks my carer is lazy

Yup. The number of times Gog gets told to get a job, that he’s skiving, that he is spending too much time with me, is unreal. Apparently even though Doctors have said he must stay with me 24/7, he is using me as an excuse not to work…even though he tried having a job before I was diagnosed, and I almost ended up dead because of it.

* ~ * ~ *

I could go on for a long time, but that’s enough for now. You never know, I might continue this in the future. So, what am I grateful for?

1. I get to spend almost all my time with Gog

I love Gog so much and I really like having him by my side and getting to chat and do things with him…of course it’s slightly ruined by the mood episodes that make me irritable or rageous.

2. I have a get out of jail free card

If I’ve been invited to a stressful event (even just a meal with family) and am struggling, I can just say “I’m finding it difficult right now, I don’t think I could cope.” If I wasn’t open about my illness there’d be a lot more disappointment and resentment towards me when I flaked out on plans.

3. The impulsiveness can be good sometimes. Just sometimes.

Over the years I’ve done some good things whilst hypomanic…not many, but some. I’ve cleaned the house for hours, shuffled furniture (that’s looked way better afterwards), cut my hair for the first time after wearing it long for several years, got a tattoo. Those are all things I like.

* ~ * ~ *

I am struggling at the moment. Things are tough, my mood is very low, and psychosis is bad. Things suck. I am sad, and angry, and bitter. This is my rant. This is why I HATE having Bipolar.

If you actually read this, here you go: a free virtual cookie! 🙂

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Thank you Trazodone

I said I slept 10 hours after taking Trazodone yesterday…that’s not strictly true.

I slept for 10 hours, stayed up for 4 hours, then slept another 4 hours!! I guess my body really needed to catch up on sleep, I haven’t slept properly since summer after all 😛

I took Trazodone again last night, just another 50mg. I got the woozy ‘drunk’ head about ten minutes after taking it, then realised I hadn’t taken it with food. I had a late night snack and lo and behold the swishy head went away.

I slept nine and a half hours last night 🙂

It is SO NICE to be able to sleep again, I am over the moon. I also don’t feel so bad about taking Trazodone for sleep when technically it is an anti-depressant…I always hear bad things about sleeping pills.

When I manage to get a GP appt I’m hopeful they will let me stay on such a low dose of Trazodone. I’m a little scared about telling the Dr that I took an old med without speaking to a medical professional (especially a med that sent me manic on a much higher dose) but there wasn’t much else we could do at the time.

Plus we’ve been waiting for an urgent referral for a month and a half, and I just needed help (or, more importantly, sleep) a little sooner than that…so I sorted it out myself 😛

1

I GOT SLEEP!

2am arrived last night and by then I’d only 5.5 hours sleep in three nights…I was feeling tearful and totally stressed; I just wanted sleep.

It was then I remembered Trazodone, the anti-depressant I was prescribed a year ago. I asked Gog if we still had any Trazodone in the house and he went hunting.

Although Trazodone is an anti-depressant, many places say it is rarely used for that purpose these days and is more commonly prescribed for sleep problems (god knows why the GP gave me it for Bipolar depression…), and I knew from past experience that this med made me sleepy.

My partner dug up some old pills and I had 50mg, which is a very small dose. Guess what?

I SLEPT FOR TEN HOURS!!

I feel so much better now, I’ve actually smiled and laughed today 🙂

Now I wouldn’t normally take random old meds in the house (they were in date though!) but…

  1. I had been on Trazodone before; it had no side effects, no affect on my low mood BUT it did force me to sleep!
  2. The GP is shut until the 29th December, and quite frankly if I had to go that long without sleep I think I’d be feeling seriously ill
  3. Today local transport is cancelled due to severe weather and flooding, so even if we did decide to go to A&E and ask them to help me sleep (and I’d really feel like I was wasting their time) it would be an absolute nightmare to get there!

So I thought fuck it. I took some old meds to help me sleep, and they did just that…and if by some miracle they do help raise my mood, that would be wonderful.

I’ll probably continue taking Trazodone at a low dose until the GP opens.

3

It’s okay, I really don’t need to sleep…

I stopped Seroquel in July 2015.

As soon as I stopped I couldn’t sleep. I’ve been on this med before and my body always comes to rely on it for sleep; this means for several weeks / a month after stopping I can’t sleep at all…for me this is pretty serious as it could easily trigger a manic episode.

Of course the professionals don’t warn you of this side effect before prescribing you Seroquel. There’s no mention of it affecting your sleep when you stop taking it, even though it can have such drastic consequences for those with Bipolar.

I struggled with sleep for months and months after stopping the Seroquel; I’d spend hours in bed going out of my mind, only grabbing a few hours fragmented sleep a night.

It started in July and continued into November. By then I was heaving daily headaches and frequently feeling nauseous, I assume from lack of sleep; I was irritable and started to really hate going up to bed every night.

There were a few weeks this month where my sleep seemed to improve, for no apparent reason, and I thought things were back to normal. I was falling asleep within half an hour of going up to bed and I was sleeping 8 hours a night. It wasn’t my usual 10 hours (I need a lot of sleep -__- ) but by god it was nice!

In the past week sleep is evading me again. It’s 9.45am and I’ve had half an hour’s sleep tonight. I’m so fucking tired.

It can’t still be the Seroquel, can it?? Why would I have a few weeks of sleeping okay and then have it all go to shit again?!

It’s not that I’ve been manic, or even faintly hypomanic…mostly since summer I’ve been in a depressive episode. Right now my mood’s in the pits so why the hell can’t I sleep…am I slowly going manic?

If I am, I’m not complaining. Anything to get out of this fucking depression.

2

A yoyo on a rollercoaster

**suicide triggers**

I’m so tired of feeling like this.

My mood is following a distressing pattern at the moment. I feel low, I feel lower, I feel lowest. I cry hysterically, am overwhelmed with anxiety, and accept the fact I am going to commit suicide. I plan it, think about it, am terrified by it.

Then after this utter breakdown the next day I feel better. I have a day or maybe even two where I feel okay, feel good even, and then the blackness returns. My mood drops over a week or two and I hit rock bottom again.

Relentless depression and desperation.

About a week ago was the first time in months, if not years, that I thought I was actually going to kill myself. I had this horrible realisation that I was at the point where I would plan and go through the act. I was hit with a wave of terror for Gog who I would be leaving behind.

Normally when I have thoughts of suicide I want the pain to stop. Sometimes, after weeks of suicidal thoughts, I might impulsively act on them…but it isn’t normally planned, it’s a spur of the moment ”grab whatever’s available and end the agony” type thing.

So it was scary to sit there with tears pouring down my face and carefully, numbly, think through details on how best to kill myself…What date should I kill myself on? How would I get away from Gog? Would I leave a note; if so what would I say? It’s a terrifying thing to plan, but sometimes there are no options left and you don’t have the strength to carry on.

Yesterday was a good day; there was laughter and love. Today, for absolutely no reason, I am back to feeling hopeless whilst suicidal thoughts swirl around my head.

Please do not tell me things will get better, I don’t think it would be helpful right now.

I have battled suicidal urges for over fifteen years, since I was a young child. My illness is worse than it has ever been. I haven’t had any stable periods for several years so it’s far, far too difficult to imagine things getting better because they’ve only ever got worse.

Even when I have happier / more stable times, such as before full blown mania, I still know at the back of my mind that the more extreme symptoms are coming and, after the manic episode is over, the crushing depression.

I’ll keep on fighting because that’s what I do. It’s what Gog wants me to do. But I am teetering on the edge.

2

Blanket statements are unhelpful

We constantly hear blanket statements given in the form of advice, usually said with the confidence that it will definitely work for us.

Most times we hear these from professionals, who often refuse to listen when we say that those things don’t help us. The thing that they don’t seem to understand is that while something might work for *most* people with Bipolar / depression, it’s not going to work for everybody.

The person suffering from Bipolar and their carer/s often know the illness better than anybody else, and become adept at knowing what will help them when. It’s a shame professionals don’t seem to respect this.

Without further ado here is our list of blanket statements that haven’t helped us!

–> “Going out and socialising with friends and family when depressed is beneficial; be sure not to cut yourself off”

When Anon’s depression gets worse going out to socialise doesn’t help her at all, yet we have had this piece of advice shoved down our throat by just about everybody. 

The stress of socialising and the effort of pretending to be okay really takes a toll on Anon. When we spend our time indoors, really only leaving the house several hours a day to walk our dogs, she is able to relax & give her brain time to rest.

–> “There is such a slim chance of a medication having a negative side effect it’s really not worth worrying about; you just need to ‘bite the bullet’ and try one”

This completely undermines the strength of Anon’s fears of medication side-effects. You wouldn’t tell someone with a fear of snakes to just “bite the bullet” and go pick up a snake that *probably* wasn’t venomous and *probably* wouldn’t bite them…

Many of the social workers and psychiatrists we have discussed side effects with have also lied, making out that side effects are extremely rare and very unlikely to happen. Anon has even been told that psychiatric medications cannot cause weight gain, despite experiencing this every time she has been put on Seroquel.

–> “Sleep hygiene is all you need to get a good night’s sleep”

Sleep hygiene includes things like avoiding stimulants (eg. coffee) before bed, only using the bed for sleep (as oppose to reading or watching TV) and avoiding napping in the day.

Some of this advice is impossible for Anon to follow. When she is manic for example we are grateful for any sleep she can get. When she is in a depressive episode her sleep drastically increases; she can sleep 14 hours at night and still need naps in the day. When she tried to fight the tiredness she struggles to function, her eyes sting and she gets extremely irritable. Far better to just have a short nap, and it doesn’t affect her sleep overnight.

Finally having the TV on in the bedroom actually helps Anon feel tired. Our last social worker told us not to use the TV in the bedroom, but to read instead…we quickly discovered this stimulates Anon’s brain and makes her feel more awake.

Different floats for different boats.

–> “It would be a good idea for you to start going out on your own, without Gog. It’s not normal to spend so much time with each other”

Having a social worker say this is extremely confusing when you’ve just had a GP / hospital staff / psychiatrist tell Gog to be with you 24/7 as you’re too unwell to be alone. 

We also resent the fact that because Anon has Bipolar, all of a sudden it’s “not normal” that we spend most our time together. We know several couples who work and live together, and are very rarely apart…yet because they aren’t mentally ill it is perfectly fine for them to be together 24/7!

We really enjoy each other’s company, and enjoy spending time together. That doesn’t make us wrong, it means we love each other and allows us to handle Anon’s illness better.

–> “Why don’t you think about joining one of the clubs available through our service, such as the weekly cooking club?”

Anon is not a people person, and she has become less so as her illness has gotten worse and professionals continue to treat her badly. We have long since accepted that some people are social butterflies whereas others, like Anon, prefer to spend occasional time with close family and friends…unless they’re manic 😉

The fact of the matter is weekly appointments with strangers, where Anon would have to put on her ‘happy face’, would massively increase her stress and anxiety. It’s fine to not be a particularly sociable person; Anon loves spending time with the people she is close to, in short bursts, and that is enough.

Secondly committing to a weekly appointment is very difficult for us because Anon’s ability to cope varies drastically day to day. Not only does it depend on how her mood is but it also depends on how her psychotic symptoms are…some days she is hallucinating almost continuously, and oddly enough has a big impact on her anxiety levels.

Obviously many people might find the advice above helpful, and it might work for them. But everybody is different. Dishing out the same advice over and over when the patient is telling you it doesn’t work is unhelpful.

Again, the person suffering from Bipolar usually has a better understanding of their symptoms and what will help them than the average professional. It’s important to listen 🙂

7

Meds? Talking therapy??

Everything I’ve ever read about treating Bipolar has said yes, while the meds are important, other things need to be done too.

One of the huge things mentioned is ‘talking therapies’ – what are they??

I’ve been getting help / seeing professionals for seven years now and I still have no idea what this is. I’ve heard about Cognitive Behavioural Therapy; I had a useless CPN begin this when I was nineteen but it was worse than useless. Within the past 18 months I was referred for CBT again, but I’m apparently too unwell / unstable for it to be helpful.

So what *should* be happening, alongside medication? All I’ve ever had were regular appointments (ranging from fortnightly to monthly), usually with a Social Worker. I saw the psychiatrist once or twice a year, but that was it.

These appts always begin with the social worker asking how I am, and then they don’t really listen to what we (myself and partner) say. If we said I was feeling really depressed and Gog was worried I was going to hurt myself, the SW would say “Keep taking your medication and lets see how you’re getting on at the next appt.” At one point I’d been severely depressed for over three months and just kept getting told to see how I was in a few weeks time.

There was never any advice. There was no information provided. No support.

Over a year ago we first mentioned me experiencing unusual symptoms outside of an obvious mood episode; the SW wasn’t paying attention at all and bleated her standard “and why do you think that is?”

I didn’t know. The SW didn’t react to this information at all, so I thought it was unimportant and brushed it aside.

A year later I am having psychotic symptoms 24/7, this has NEVER happened before. At the time when I mentioned it to the SW I thought I was having a ‘mixed episode’…maybe if the SW had listened and paid full attention she would have recognised these new symptoms and could have prevented it from getting as bad as it has.

We were always told to ring the SW if we were in a crisis, but when we did they didn’t do anything differently anyway.

The result of these appts (and I’ve seen 6+ different SWs regularly over the years) was that I began to dread the appts. I’d get so anxious over them, and resent what a waste of time they were.

What should professionals be doing? Am I just weird for not finding this helpful?

I’m struggling massively at the moment. Alongside the low mood and the psychosis I’m battling anxiety that makes me feel I can’t talk or I’ll be sick.

Gog seems really low and I’m seriously freaking out that he’s falling into a depression and it’s all my fault.

Hello breaking point, I’m back.