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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