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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…
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I made a snuggle den

Alongside feeling depressed today I felt physically ill too…not my usual head / back / neck pain, more an overall feeling of having a cold.

I kept getting hot, then really cold, and my head felt like it was stuffed with cotton wool. I was exhausted too, but I’ve been sleeping extra and feeling tired anyway.

We got rid of our couch a few weeks ago, because my partner’s weird and sits on the floor most the time; it was really just taking up room. Getting rid of it opened up a lot of extra space in our living room, so today we created a ‘snuggle den’.

We collected several sleeping bags, half a dozen blankets and pillows, and made a little nest-like area in the room. The really cool thing is that it happens to be underneath where we stuck a load of hand-drawn ‘memory photographs’, so I can lay there and look up and see special memories 🙂

It’s a good place to bury in and lose myself, and me and my partner just fit side-by-side so it’s really snug and safe. Definitely something I’m going to try utilise when I need somewhere to hide, either from depression or psychotic symptoms.

Because the snuggle den is under the stairs, our dogs have their own smaller version too!

I opened the cupboard under the stairs, which is about 3ft x 2ft with a sloping roof, and put the old couch cushions and some blankets under there. Our younger dog loves it already 🙂

Here’s a photo of our wall of memories from when we first stuck them up, and you can just see the cupboard that makes the doggy den too!

memorywall1

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Things Bipolar stole from me

1. The opportunity to enjoy my time at uni

When I left for university at eighteen, I was already pretty messed up mentally…I was struggling with severe depression and an eating disorder. Nevertheless I battled my way through first year and passed my exams.

Second year came rolling around and everything went to shit…my eating disorder returned when a family was diagnosed with a terminal illness and I experienced my first manic episodes, not that we realised it at the time.

My depression got worse, I started experiencing psychosis mixed in with my mania, and I had to drop out.

My parents were fuming, they told me I couldn’t stay at their house for the holidays, and because my partner was caring for me he had to drop out of uni too…I ruined it for both of us.

2. The ability to work

When I wasn’t mentally well enough to get a paid job, I did volunteer work. I volunteered in charity shops sorting stock, and I volunteered at several animal rescues…I walked the dogs, trained the dogs, socialised the cats and cleaned the cat kennels.

There were periods of time before my illness got really bad where we had our own small business, and I walked and trained other people’s dogs too – it was never enough to live off, we never earned more than ÂŁ20 a week, but I LOVED it, and it helped me feel productive and keep me busy.

When I got too ill to help dogs, we had to drop out, even from volunteering.

3. My figure

I’ve struggled with my weight from the age of about 10. Throughout my life I’ve always been on the lower end of a healthy weight, and I’ve still hated myself for it and thought myself ‘fat’.

When I was 22 my psychiatrist started me on Seroquel, and I gained over 2.5 stone in less than 4 months. No matter how much I exercised or what I ate, I gained. I couldn’t lose this weight, and when I did manage to shift a little the next med brought it back up.

Even my last social worker said I might have to accept the fact that I’ll never get my weight down to anywhere near what it used to be. At 25 years old, this was incredibly depressing…

4. My friends

I have no close friends.

They all either left when I was struggling my way through the start of the illness, and couldn’t interact or socialise with them, or they get fed up that I can never plan things in advance because I don’t know how my mood will be.

I am SO LUCKY to have Gog, my partner, as otherwise I would be totally alone.

5. A sleep pattern

When manic I sleep 2-5 hours a night; when depressed I sleep 12-16 hours a night. Sometimes my body will insist that I am nocturnal, for no reason, and we have to adjust to sleeping all day and being awake all night.

6. My health

Not just my mental health, being mentally unwell affects me physically too.

Head aches, migraines, neck ache, back ache, eyes that can’t focus, blurred vision that constantly changes, tremors etc etc.

7. My hair!!!

When I was manic I cut all my hair off into a mohican. Then when my psychosis was really bad I cut all my hair off, because I thought cameras were being hidden in there. I have no hair now, none at all, and I have to hide it under caps or buffs whenever I leave the house.

In the past I have spent a year growing my hair and then, when I finally get it to the length I want, I hacked it all off when manic.

8. My confidence

I guess this one should go without saying…

9. My ability to be alone

Because I am always in a mood episode, and I’m always experiencing psychosis, it’s not safe for me to go out or be on my own.

It’s okay, because I love Gog and I love spending time with him, but sometimes I do just want to go for a walk on my own, or be able to chill at home whilst Gog goes to the shops instead of having to go with him.

10. My happiness

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He didn’t even try

Gog here.

I went to Anon’s GP appointment yesterday without her because she couldn’t face talking with a Doctor or leaving the house – her panic is unreal.

I told the GP what has gone wrong: we have been referred back to a service we last saw almost a year ago(which is fine), we got the letter the day before the appointment and Anon has been told the person dealing with her case is the social worker Anon hates – the one she asked everyone to make sure she she wouldn’t be referred back to. Oh, and the appointment STILL isn’t with that psychiatrist we’ve been waiting for since early November.

The GP was entirely unhelpful.

I had a list of things that maybe he could do to help: call the service himself and relay our worries; could the GP talk with the psychiatrist about medications so Anon could start one (several helpful GPs have done this in the past); could the GP contact the psychiatrist and ask if he could meet with us either at home, by video call or email?

The GP simply said “no” to everything, he wouldn’t even try. He then blamed the NHS cuts for him being so useless.

He also said that travelling to the appointment and physically going there was “part of the treatment”, meaning nobody would ever do home visits – to me this makes no sense whatsoever, because when somebody is so panicked and suicidal they can’t leave the house, it means they can’t get help!

I’m 99% certain him saying that is utter bullshit, too.

He had the philosophy that Anon just needs to ‘get over it’ and go to the appointment; he had no understanding that Anon is dealing with a constant barrage of psychosis, warped thoughts, terror, anxiety and low mood.

I don’t know where we go from here.

Anon wants to give up and stop trying to get help. I want to try phoning 111 again, as they actually helped last time, but if that fails possibly try persuade Anon to come to A&E with me, as we’ve been advised to do that several times by the charity Bipolar UK.

But if that goes wrong (which it probably would) Anon really wouldn’t ever want to see any Doctor ever again!