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Everything is NOT always fine!

Today I want to discuss how a wide variety of people seem to often assume that mood episodes are getting better, when they are not. The amount of people who end conversations with us concluding, “well at least it’s getting a bit easier now!” is astounding.

Now the people making these statements come from all walks of life. We have had mental health professionals, family and friends all decide that our lives are improving steadily. There are many problems that can arise from this.

You could say that these comments are trying to see the brighter side of life and are just trying to be positive. Unfortunately this can have an adverse effect on some people suffering from Bipolar (or, I imagine, pretty much any mental health issue). It often feels like everybody is trying to belittle our problems. When barely coping with life the last thing you need is a constant barrage of happiness and lies. This also causes many people we know to think we spend all our lives “chilling out” and have a much easier life than them, as we don’t work. This is pretty ludicrous and extremely aggravating.

Another potentially damaging consequence of people assuming moods are improving comes solely from the professional side of things. To put it simply when doctors, nurses and social workers speculate that everything is getting better, they are going to offer less support as they don’t think you need it. I have witnessed so many appointments ending with advice along the lines of “Well then, keep doing what you’re doing and hopefully things with continue to get better” when Anon has spent the last 3 months depressed, and still feels incredibly low and suicidal.

As a carer it’s important to try to get across the misery of the current situation. I personally struggle with this on a regular basis as complaining and moaning about life is not in my nature. I can clearly explain how Anon and I are managing, but if I don’t act and sound like I’m ready to give up then 9 times out of 10 we won’t get the support we need.

My advice to carers and sufferers alike is: never be afraid to sound miserable. The alternative can be much more damaging both socially and medically.

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Bye bye meds

I have stopped taking my anti-psyhotic; I am med fee.

I have done this without discussing it with a professional. I do not recommend this. I know it is stupid, I know it is a bad idea, blah blah blah…i’m going to talk below about why I have done this and why, as a carer, Gog isn’t totally against the idea.

I have been taking Seroquel for seven months. I saw my psychiatrist in January, when he started me on it, but haven’t seen him since. The dose has been increased a few times, but I haven’t met or even spoken with my psychiatrist since January.

I took Seroquel before, in 2012, and I hated it. It did help my moods, but I gained over 2.5 stone in 4 months, which triggered an old eating disorder. I restricted my calories to 500 a day, and exercised excessively. I still gained weight, so I came off it.

Taking it again in 2015 I have hated it just as much. The side effects suck, I’ve gained weight and it hasn’t helped my mood at all. For the past four weeks I have been consumed by a mixed episode; irritability, racing thoughts, depression, exhaustion, suicidal thoughts, periods of intense energy, impulsivity (I don’t think that’s a word, but whatever…) and hopelessness. Before that I was depressed for four months.

I am tired, of it all. I can’t talk to the psychiatrist as I’d have to go through the social worker. I can’t get in touch with the social worker; there was a lot of trust lost between us and I can’t face talking with her. Not even through email…panic attacks suck.

I could go to my awesome GP, but this extreme anxiety has seeped across to all professionals. I have always freaked out before every appointment, but now I can’t face them at all. Besides, there’s nothing she could do but re-refer me to my social worker, and I don’t want to waste my GP’s time.

This isn’t something I decided on the spur of the moment, and me and Gog have talked about it a lot. He obviously wanted me to talk about it with my GP, but I can’t. I argued and argued with him, and we agreed I can come off my meds. Why stay on them if they’ve done nothing?

In the meantime Gog is going to get in touch with our GP surgery, and ask what he needs to do so that he can talk to my GP for me, without me being there.

Reasons for staying on Seroquel:

– I’m supposed to

Reasons for coming off it:

– I have gained weight and I disgust myself.

– My moods are unstable, probably more so than ever before. Intense episodes that seem to last a life-time, and bouncing from one shitty swing to another. I am always told that maybe the med will help, to “give it more time”…I am SICK of this, it is not working!!

– Side-effects other than weight gain…lack of balance, clumsiness, sleep I can’t wake from as much as I need to, having absolutely no energy

– Health anxieties, over liver damage, heart attacks and diabetes. It is terrifying.

I have been med-free for about a week now. For the first time in months and months I am getting up in the morning at a normal time, and I don’t need an excessive amount of sleep. Unfortunately I find myself waking up early in the morning, and being unable to get back to sleep. I can go to sleep just fine, but staying asleep long enough is impossible, and I spend all day exhausted.

I am so tired I feel dulled down. I don’t want to do anything, go anywhere. I want to stay home and sit on the couch, waste time on the internet, and possibly take a nap. I’m sure my sleep will adjust in a few weeks; it usually takes that long to return to ‘normal’. Then hopefully I won’t feel like such a zombie 🙂

I know stopping my meds won’t probablyhelp, but I am sick of taking them, and I struggle to see how my moods can get much worse. I am tired.

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Not a real disability

One of the hardest things about having a mental illness is that’s invisible. For years we have had the message that only physical disabilities are “real” shoved down our throats…even the handicapped logo perpetuates this, it being a person in a wheelchair!

Because Anon has a mental disability, and not a physical disability, we have been told she doesn’t qualify for lots of things that she legally should be entitled to, and that would really help us. I’m not even talking about benefits here (although that is a nightmare too!), but just day-to-day passes that could help.

We have been refused a disabled person’s bus pass and a disabled person’s railcard. Legally, Anon qualifies for both of these, but we have thus far been prevented.

The disabled railcard we only discovered within the past year; Anon found a pamphlet at our local station. To be able to qualify for a railcard the leaflet listed the following criteria: be a wheelchair user, not being able to walk over a certain distance, being blind, having a learning disability and not having use of both arms. There was nothing there about mental disabilities, and if I recall correctly it even stated mental health problems did not count…and so we assumed that we need not apply.

However today Gog stumbled across the Disabled Persons Railcard site, which states:

“You will qualify [for the railcard] if you:

  • Receive personal independance payment (PIP)”

It was the very first point that was listed! Funny how they didn’t include that in the pamphlet, isn’t it?

We have tried to apply several times for a disabled person’s bus pass. The first was in 2012, in a different county, so the rules were slightly different. You needed to fill in a form, and have a GP write your issues, symptoms and reasons why you couldn’t drive in a box.

We booked an appointment at our local surgery, and took along the form. The GP, who we had never seen before, listened to Anon’s symptoms and said he would fill it in for us…the next day a receptionist told us he couldn’t, and that we had to fill the form in ourselves. What? Okay, whatever.

Then we moved to a new county, and some years later we applied for a slightly different disabled person’s bus pass. This time we had to go to a local library and use a system where you speak into a phone, and can see the person you’re talking to on a small screen. This raised huge red flags for Anon, but when Gog asked if he could be the middle-man and do the talking they refused.

Anon has huge, huge issues with talking on the phone (all her mental health professionals know that Anon physically cannot talk on the phone). She is also highly uncomfortable talking to people she doesn’t know, especially about intimate things. This was made much worse with the fact that she was sat behind a flimsy partition, in the middle of a busy library, and everyone nearby could hear her talking about very personal issues.

Nevertheless Anon gave it a bash. Now, the disabled pass we were applying for states that people with a mental disability qualify, providing that if they applied for a driving license, their application would be refused because of their mental health problems. With auditory and visual hallucinations, reckless behaviour, paranoia and suicidal ideation, Anon’s most certainly would.

So we sat behind the partition; Anon in front of a screen and Gog a few feet in the background, telepathically sending support. Communication went through and, shakily, Anon explained what we were trying to apply for.

The woman replied that unless Anon’s medications affected her ability to drive (such as causing excessive sleepiness, slow reactions etc) we would not be able to qualify. She said the only way we could get a disabled person’s bus pass was if we went to a medical professional (which  does NOT include a GP) and they wrote a letter stating that Anon’s meds affected her severely.

This is absolutely ludicrous, and Anon was so shaken up by the process that we never tried to apply again.

The most ridiculous part is that it clearly states on the pass’ site, which is entirely dedicated to helping people apply for the concessionary card, that :

“If, for people with any of the disabilities listed above [which included ‘severe mental disorder’], the local authority can be confident that a licence would be refused they should therefore be able to issue the travel pass automatically”

It even says on the site that there is no need to apply, and subsequently be refused, a driving license in order to qualify for the disabled bus pass!

As a carer, I (Gog) have emailed the DVLA themselves to ask for advice, and to see if Anon would qualify for a driver’s’ license or not. This is a huge farce, and could take weeks.

Please people, having an ‘invisible’ disability is hard enough already…there’s really no need to make it harder.

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Low Mood Musings

Hello, it’s Gog here.

I want to discuss the trials that face people with mental health issues trying to cope with an episode of depression. For almost 6 years I have been caring for my partner who suffers from Bipolar Disorder. I’ve tried my utmost to learn and adapt to making her life more manageable during the low side of her mood swings.

Understanding a low episode is incredibly difficult for somebody who has never suffered from such a severe mental health problem, and it has taken me years to gain any insight at all into the trials of a depressive mood.

One way in which a low mood can manifest is that living every day life can become near impossible. To say that small problems become huge, insurmountable issues is a massive oversimplification. Although this is true, it is not just problems (such as missing the bus or spilling a drink) that are an issue.

Decisions can feel strenuous to make and may only cause the depression to spiral downwards. Simple daily tasks that most people could barely consider an action are often unreasonably challenging. A huge stumbling point for my partner is choosing what to eat (eg. for lunch) and this often results in hours lost in misery.

As a carer for somebody suffering with these issues it can be easy to forget that the activities that make up our lives may not be possible for a depressed individual.

For some people, becoming more active in outgoing activities can help them through an episode…but it is a common misconception that this works for everybody. As much as this helps one person, it may be utterly miserable and an added stressor for another.

Very few blanket statements exist in dealing with depression and nothing is black and white with this complex health issue.

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Welcome to the Blog

Bipolar is different for every person. Their triggers are different, their cycles are different and the symptoms they experience each episode is different.

Anon has been struggling with Bipolar for six years (although it feels much longer!) and Gog is her full-time carer.

Here is a brief description about what my (Anon’s) Bipolar is like:

  1. Stability – I am not often stable, and when I am it is usually for less than a week. We recently worked out that in the last 18 months I have been stable for 3.5 weeks.

When I am stable, I can do things. I have energy, a positive outlook and am actually quite independant. I can cook, I can clean and I can care for my animals. I still struggle a lot with anxiety, especially anxiety in social situations (this can include things like talking to a cashier when paying for shopping) and over health issues, but I am much improved.

  1. Depressive episodes – these tend to last longer than my manic episodes, and they tend to start off fairly mild and increase in severity. In the beginning we will notice that I am sleeping slightly more, and that I get ‘sad’ easily.

As it develops I need more and more sleep (16 hours a day is not unusual) and struggle with even the simplest of tasks. Trying to choose what to eat can result in major meltdowns, and taking a shower feels like climbing Everest. I begin to think everyone would be better off without me, and suicide seems like the only viable option.

My depressive episodes tend to last between three to nine months.

Gog says: When depression takes hold of Anon it makes our lives incredibly difficult. Anon becomes an entirely different person; she withdraws from the world, she can’t make any decision no matter how easy it is, and the smallest of tasks are impossible. She gets into massive funks where she completely shuts down; she can’t maintain eye contact, she can’t talk and she is unreachable. I have to watch her 24/7, which makes sleeping both difficult and terrifying. I can’t even trust her to shower alone, as there are plenty of things in the bathroom that she could use for self-destruction.

  1. Manic episodes – my manic episodes don’t tend to last as long as my lows, and unlike my depressive episodes there is usually a pretty clear trigger. Triggers can include celebrations such as Birthdays and Christmas or any event that causes me to miss a little sleep…illness, late nights, you name it!

Just like in a low, my mania starts off mildly. I will feel happy and think to myself “omg, I think I am stable!” Over the next few days my need to sleep will decrease, and I will become more energetic and productive. My thoughts will began to speed and I will jump from one thing to another. I will start splashing the cash on anything and everything, and I am so irritable I will bite Gog’s head off if I think he looks at me the wrong way.

Pretty soon I will only be sleeping a few hours a night, I will be trying to start crazy adventures (moving house, going on an unplanned holiday at 4am, enrolling at university or starting a business endeavour I have no knowledge about) and will be suffering from psychosis. This is the state when I am at my most dangerous to others, and I can also (accidentally) endanger myself.

My manias can last anywhere between two weeks and four months. I don’t have anywhere near as many manic episodes as I do depressive episodes.

Gog says: Manic episodes can be just as dangerous as low episodes but are much harder to identify early on. Managing sleep is easier said than done, especially when medications that affect sleep are introduced and doses are changed. Once a manic gets into full swing there is no mistaking it; excruciating boredom, desperation to spend money and a constant go-go-go attitude are hard for me to keep up with. Then there’s the lack of sleep – how can I watch Anon 24/7 when she needs 2 hours sleep and I need 8?! When psychotic symptoms hit I know I’m in for a long and bumpy ride…

I tend to bounce straight from one mood episode to another, with no stability in between. Depressive episodes tend to last a long time, and when triggered a manic episode is always followed by a fall into depression.

We are writing this blog to try and educate people about how big an impact Bipolar disorder can have on people’s lives, be that the person suffering from Bipolar, their carers or even friends and family. We hope to add more information about Bipolar disorder to our blog, alongside resources we have found helpful and will also share the day-to-day struggles of our lives.