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The many faces of mania

About a week ago we noticed the very beginning of hypomania.

Since then it’s rocketed upwards. It’s felt VERY odd feeling this way, I don’t remember when my last manic episode was, and especially not where I got this manic!

All of yesterday was awful, but by the evening I was entirely broken.

For six nights I hadn’t gotten more than 6 hours sleep, with the smallest amount being less than 4 hours. I was jittery, couldn’t focus on anything, was irritable, and constantly moving – rocking, flailing my legs, punching myself. I felt like I was crawling out my skin.

My bf gave me half a valium in the evening. That usually knocks me right out; my mania was so intense I was left very much awake, but much more lucid and able to concentrate. I took another half before bed, and slept 5 blissful hours last night!

I’ve had half a valium early today, and will take another this evening. Must keep the mania at bay!!!

Anywho, here are the many faces of mania – insomnia, intense energy and frustration, bouncing off the walls.

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Why must I be out in the world?!

We signed up to the new GP surgery today, the other one in our town.

We get there, and the receptionist says that although we’ll be signed to this surgery, most appts will be at the other surgery, a 25 minute bus ride away…whyyyyy?!

Apparently you can see Dr’s at our surgery, it’s just a longer wait as there are fewer appt slots there. We said that was fine as the previous surgery left you waiting 3 weeks for an emergency appt XD

Even so, apparently we have to have a ‘meet and greet’ appt with the GP before we will be registered, and that has to be at the far away surgery…this sucks because I’m already going to freaking out (I haven’t had a physical appt at a surgery in a few years, and this will be a new surgery with a new Dr!) and the bus will make me very sensitive seizures too. Add some stress and I’ll be fucked >__<

The receptionist said the lighting was dim at that surgery too, when I asked, but my bf still wants to try and get the meet and greet at the nearby one. Idk.

Filling the questionnaire in was fun, considering all the information they demanded from you, and I had no idea what to put for epilepsy…I’m 98% certain I have epilepsy (as my seizures are light triggers, no t tonic clonic, and I have auras – all are incredibly rare with NES), but as I’m not diagnosed I couldn’t circle it.

In the end I circled everything, and put seizures under investigation, which is what a previous Dr wrote on my fit note.

Whilst we were out I also goggled up and got to go in the second hand bookstore, where I haven’t been able to go for years due to seizures and lighting. I love this place, and found a very old interesting dog breed book 😀

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Seizures aren’t all the same!

Did you know there are over 40 different type of seizures?

When people hear the word epilepsy, they think of people dropping to the floor and shaking…but that isn’t even the most common type of seizure!!

The most common type of seizure is complex partial (also called focal impaired) seizures; where the person looks conscious, and may move or wander, but in actual fact they have lost consciousness. Think of the phrase “the lights are on but nobody’s home”!

I have simple and complex partial seizures. I find on an almost daily basis that because my seizures don’t involve dropping to the ground, people don’t take it anywhere near as seriously. This pisses me off, because I deal with the following yet I have it ‘easy’?!

  1. Over a dozen seizures daily that last 1-2.5 minutes at a time
  2. Clusters, where I have half a dozen seizures in a 20 minute period
  3. A complete loss of control about where these seizures happen…it can be mid sentence, when I’m eating, surrounded by people, staring at someone etc
  4. Feeling exhausted afterwards
  5. Feeling spacey, slow-brained and confused
  6. After complex partial seizures I act erratic, and may shout swear words, burst into laughter, or gesticulate hugely with my hands. People have called me disgusting, because they assumed I was drunk / on drugs
  7. Before about 70% of my seizures I experience an aura, which lets me know a seizure is incoming. My auras vary from flashing white specks (the most common), to a panic aura. I feel flooded with panic, and often end up hyperventilating and crying, THEN having a seizure
  8. Losing large chunks of memory, hours at a time
  9. Not being able to go out without wearing gigantic ski goggles
  10. Having to avoid bright lights, flashing lights, arcades, the cinema, and bodies of water
  11. Having several migraines a week, because my brain is mush from all the seizures

Epilepsy is an invisible illness. There’s so much suffering going on under the surface that passers by don’t see.

For anyone interested, this is me during a simple partial seizure

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CBD oil blues

CBD oil has not been good to me.

CBD oil is quoted as helping EVERYTHING, from anxiety disorders, depression, epilepsy, to stroke and cancer. It’s natural, and supposedly has no side effects. It starts working within a few days to a week, and the results are amazing.

Only that hasn’t been the case for me at all.

I’ve tried A LOT of different CBD oils, various strains, strengths and from various companies. In the UK the strength of an oil is measured in %, I’ve had oils vary as much as 3-30%. The 30% was one of the least effective!!

First thing to be aware of, dosing instructions from the companies can’t be trusted!

Second thing, you can indeed have side effects from CBD oil. For me, this was migraine. I also know somebody else who experienced migraines when starting CBD oil. It also messed with my sleep depending on the dose; low dose and I slept too little, with a higher dose my sleep was deep and peaceful.

The most effective oil for me has been a full spectrum 4% CBD oil with traces of THC. The company recommended 3-12 drops a day, which did ABSOLUTELY NOTHING for me.

A friend told me most oils require a daily dose of around 30 drops, especially for seizure disorders. They are notoriously hard to treat. Sure enough we upped my dose to 18 drops a day, and saw a huge improvement.

It reduced my triggers (eg. cars going past with headlights on no longer caused seizures, in fact they barely made me feel spacey). It shortened the length of my seizures, and meant I bounced back / recovered from a seizure much faster. It also greatly reduced seizure rage, which was incredibly important to me, and I felt better in myself – more “me”!

However, after three days with less than a dozen seizures and feeling really good (for me 😉 ), I had to switch to a new CBD oil as mine had run out.

This one is an 8% CBD oil from the same company, but it’s an entirely different strain.

Because I had to switch, I fell right back down the epilepsy pit. Today has been fucking awful, I might as well have been taking nothing.

I’ve had a lot of LONG seizures, experienced a huge cluster, and was left feeling extremely physically unwell with a migraine. I haven’t noticed any triggers today, nothing that would usually cause seizures; no bright lights, missing sleep etc. It’s ridiculous.

We were going to start this oil at a low dose and gradually build it up, but fuck that I need relief!! Instead of a starting dose of 5 drops we’re doing 14, tomorrow will be 16 drops and the day after 18. We’ll see how I’m doing then.

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Lose control, gain control *ed trigs*

From the age of 16 – 21 I battled anorexia.

I first recovered at 20 years old, then had  a slip when I was 21. My partner helped me recover, and for several years after that I maintained a healthy weight. I was then put on a variety of psych meds and gained a lot of weight, and was never really able to lose all of it again…regardless my body image was much better and I was enjoying food, even if I did have periods where I despised the way I looked.

This past month has seen those ED thoughts raise their ugly heads, and I didn’t know why (after 6 years since my last blip) it had happened…I figured it out a few days ago, I think.

I started having a lot of seizures within the past 6 months, and I think the lack of control and helplessness has definitely pushed me towards ED thoughts (lots of control there!), and on top of that one of my dogs is very sick. Not only a huuuuge stressor, but my initial descent into disordered eating at the age of 12 (and my ‘blip’ at 21) were triggered by family members being terminally ill.

Having these thoughts fill my head again after so long is truly, truly bizarre…and, if I’m honest, extremely exciting.

I am thrilled about the control, the inevitable weight loss, and falling back into old habits is like putting on a comfortable old pair of shoes. It’s comforting, it really is.

I’m hugely massive now, so losing weight isn’t a concern, and I’ll never get anywhere near my lowest weight. I’d love to have that BMI of 15 again, but lets be honest it’s never going to happen.

Regardless I’m happy to be falling back into this, but I won’t let it get silly.

I’ve only acknowledged and acted on the the thoughts for four days so far, but I’ve been pleasantly surprised with how easy it has been so far. I’ve lost weight already and the comfort it’s brought has been great. It’s just…so so weird after not even thinking like this for many years.

 

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My anxiety is drowning me

I haven’t had anxiety like this for months, and it suuuucks >__<

I’ve always had pretty bad anxiety, ever since I was in my early teens. When I was 19 I was diagnosed with Generalised Anxiety Disorder, and yeah I do spend a lot of time anxious about a lot of things – some realistic worries, some really far-fetched.

Normally I can cope with these fears. Even if I am overwhelmed for a short period of time by anxious thoughts, I can often bounce back and push forwards.

But sometimes my anxiety gets so overwhelming that I can’t think, or cope, or even breathe. It’s not a panic attack, because I can act normal on the outside (which I can’t when I’m having a panic attack), and it lasts for days instead of minutes.

This past week my anxiety has been phenomenal; I’ve felt suffocated 24/7. It’s had me crying in public when walking to the train station, staring at a wall digging my nails into my palm to try stay in control, and having to stand still and breathe deeply because I’m so dizzy with fear.

I’ve lived with severe anxiety for so long, and I’m so tired of it.

I know a lot of people see anxiety as being a ‘nothing’ illness, as something that’s not so bad. I’ve even had CPNs and Social Workers tell me to “just don’t think about” what’s worrying me.

And it’s ridiculous because my anxiety is crippling.

It gives me headaches, and makes my chest hurt (which makes me even more anxious). It makes me cry, feel suicidal, and struggle to breathe. I have Bipolar Disorder and constant psychosis, and we’ve always said my anxiety is one of my most pervasive and difficult symptoms to live with.

An anxiety disorder isn’t worrying a little about something, but being able to brush it aside and carry on with your day…it RUINS you.

It’s exhausting.

Just needed to vent I guess 🙂

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Everyone with Bipolar can work

Apparently I filled in a survey about Bipolar disorder at the end of 2014.

I don’t remember the survey or what it was for, but it’s somehow tied into the NHS.

Yesterday I got an email with some follow-up questions; they asked me to rate some questions according to how important I thought they were.

Filling the survey out I got more and more depressed and angry at how they were marketing Bipolar – I wish there had been a comment box at the end of every question so I could have added my thoughts.

The entire thing was geared towards people thinking that you can recover from Bipolar, it is the person who has Bipolar’s job to manage themselves and their symptoms, and people with Bipolar can lead ‘normal’ lives with jobs etc.

One question asked how important I thought it was that the Bipolar person be “trained” to manage their recovery using the following methods:

diet, exercise, sleep, yoga, meditation, rest, routine, sunlight, change of job, avoiding alcohol and recreational drugs

Uhuh, yep. Because if I eat right, exercise, sleep well (in a mood episode? How can I magic myself into that?!), meditate, rest, have a routine, sit in the sun, manage a job (HA!) and don’t drink or do drugs…I’ll be fine, all my symptoms will disappear!

As someone who has Bipolar, I am so tired of constantly having this belief that I can and should be working shoved down my throat.

Almost every book on Bipolar I’ve read talks about the fact I should definitely be well enough to work. Websites list staggering percentages of people with Bipolar who are symptom-less and work a gazillion hours every day.

Everything is pushed towards making sure the Bipolar person *knows* that recovery is possible and they can and must work.

Work is good for them, work needs to be what they do, if they aren’t working they are lazy…blah blah blah, it’s all bullshit.

Fact of the matter is Bipolar is a lifelong illness, and those with severe Bipolar probably can’t work. Isn’t it obvious that those who have no stable episodes obviously can’t hold down a job? Or those who have tried a dozen plus medications, and none of them have helped long-term, are going to lose their job when depression or mania hits?

I’m tired of this illness not being taken seriously.

When I read things or am told about how well people with Bipolar do, or the fact I should be able to work, it literally never helps…it makes me sad and lonely, because if everyone else is fine why am I so fucked?

It also makes me anxious because if most people with Bipolar hold down impressive jobs, that’s gonna mean even more pressure on me to get working before I’m anywhere near ready. The rest of the world already sees me as a lazy, scrounging shit muncher and it’s not pleasant.

Although my last social worker and I ended on bad terms, the one thing I really appreciated was her ‘get back to work plan’ (I asked about getting a job whilst hypomanic).

She said I’d need to be stable for around two years before I should think about getting a ‘proper’ job

After 6 months stable I should start attending a group one day a week and slowly build it up to several days a week; after another 6 months stable I can start volunteering once a week and slowly build it up; after another six months I can get a part-time job one day a week, and then after a further six months I can think about building up days or getting a few days of a full-time job.

That’s what we should be telling people who have a long history of severe Bipolar disorder.

There shouldn’t be a rush to get people working; their health should come before this need to get them in a job. We need to admit that some people with Bipolar might never be able to work, whereas for others it might be a breeze.

Bipolar is an illness where each case is individual.

I also found these questions from the survey laughable.

What are the most effective ways to train and support a person with bipolar so they are motivated and able to manage the condition themselves?

How am I supposed to manage my Bipolar? I do what I can, yet everyday is hell.

I try to eat healthy, I take vitamins, I get 1-5 hours exercise every day, I listen to my body, we monitor my symptoms, I colour, I read, I handle my pets, I take on my pets’ responsibilities when I am able, I don’t drink, I don’t do drugs…yet I haven’t had a stable day for years, and I experience psychosis every day.

Sometimes an illness is too much – would you expect someone with a serious physical illness to manage it themselves?

M4: What can we learn about managing bipolar from the people who are managing the condition well?

As I said earlier: Bipolar is different for every individual.

Even if you take someone with the same type of Bipolar…one person with Bipolar 1 might experience one episode every few years, whereas someone else might have rapid cycling Bipolar and switch every month or so. There are huge variations in people who rapid cycle; some of them have stable episodes between being ill, others have none.

Nobody is the same.

One person might be virtually symptom-less, yet if you had them tell someone who is very ill what they are doing to manage (exercising, eating vegetables, charting symptoms) the ill person might already be doing it and more.

Bipolar isn’t predictable, and it’s very unique to each person suffering from it.

I think Bipolar is one of the most misunderstood illnesses. There are very few people who actually understand its’ patterns – people think it’s a laughable illness (“I mean, everyone’s happy and sad at some point aren’t they, and that’s all Bipolar is!!”) or something to joke about (“the weather is so Bipolar!”) or they think it’s not that serious.
It’s about time professionals started taking this illness seriously and actually trying to help those who have it, instead of expecting the ill person to do it all themselves…