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Migraines

My head is so sore lately.

It doesn’t take much at all to trigger a headache, and it doesn’t take much at all for it to lead into a migraine. My neck’s being a pain in the arse too, any time it even slightly aches, it decides to make a big deal out of it and cause a headache / migraine…me and my neck are arch enemies XD

My mood’s weird today. I’m not sure if maybe it’s not bipolar-related but actually seizure-related, and I’m just in for a tough day seizure wise.

I never knew seizures affected mood so much, but before certain seizures I either feel incredibly depressed or full of rage. So much rage I am scared I’m going to hurt myself (last time the urge to punch through glass was so strong I had to sit on my hands and bit my tongue until it bled) or my partner. After seizures my mood tends to be one of two ways – very sad and very teary, or completely off the walls energetic crazy. It is exactly like being manic, but it’s not mania, it’s just seizure after effects!

So it’s all really weird and confusing.

To say how many stressors there are at the moment though (new puppy, physical pain, seizures to deal with) I feel like we’re actually doing pretty good…no consistent suicidal urges for days, missing sleep but coping, dealing with seizures without wanting to curl into a ball under a duvet and never emerge ever again XD

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New look for the blog!

I changed this blog’s theme today, what do you think? 🙂

Today has been a fairly okay day mood-wise, but I have been in A LOT of pain. It started as an aura for a seizure (my biggest seizures generally have auras including strong headaches, feeling cold, deja vu, and of course then the symptoms that my smaller seizures have too, ie. confusion, tiredness etc).

I had some seizures, then I fell asleep. I think my neck must have been positioned ever so slightly strangely (I have such a damn sensitive neck, it doesn’t take much at all to trigger my neck pain and this *always* leads to headaches). So when I woke up I already had a very painful headache 😦

I took two Codeine immediately, and Gog gave me a neck massage bless him which he is *really* good at, but for hours afterwards I couldn’t concentrate on much or enjoy anything because I had a terrible headache.

We discovered some months ago that what I have always counted as headaches are actually classified as migraines, and are much worse than what most people I know class as headaches – ie. for me headaches make me feel extremely sick, movement causes significant pain, lights intensifies the pain etc.

I took more pain pills – seriously fuck how many you are supposed to take, I am SO sick of living in pain!! – and it’s eased a little.

I’m a little annoyed because I had a lot of plans today (we just got a new puppy last night who is to be my assistance dog, so I had lots of stuff I wanted to do). I got some stuff done, including beginning clicker training with her and a walk in the dark, but I had to leave a lot of things for another day.

Anyway, photos because she is cute 😉

sasha6

day1sasha2

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Sleep

I’m not sure I’ve ever slept so much in my life, even the times I’ve slept a stupid amount due to depression.

This time the sleep is caused by seizures – not only have we figured that lack of sleep is a surefire way to guarantee a day filled with seizures, but we’ve also discovered that napping when I feel even slightly tired is great for resetting my brain.

Yesterday I had a lot of seizures and ended up sleeping 4pm-6am, today I had a few absence seizures but otherwise was good, but still needed a 2hr nap around 3pm. No seizures since and my head isn’t even that spacey 🙂

It’s so easy for mental health professionals, or family and friends, to say that the most important thing we can do is stick to a schedule – especially a sleep schedule!

But there are a lot of illnesses where, if we listen to our body, sleep can be extremely beneficial and we should sleep whenever we need to. Sleep’s wonderful for healing, it can help boost your mood, reset your brain, and often you feel more energised.

For five years I had every single professional tell me how important it was to stick to a sleep schedule, that I MUST NOT sleep more than 8 hours a night and I must NEVER EVER EVER nap in the day.

And I tried to live that way for years, and it was hell!

Now I listen to my body. I nap when it says I need to, if I wake from a nap and I’m still tired I’ll return to bed and sleep until my body is ready to wake…it’s been amazingly helpful. Nine times out of ten when I wake my head is clear, my mood is brighter, and I have absolutely no inklings of a seizure.

The way me and my partner summed it up today is: we’d rather I lost a few hours to a nap and woke feeling better, than fought through tiredness and had multiple seizures, losing a whole day and risking injury. It’s not rocket science.

Medical professionals have their place and sure, they can have useful advice to offer…but at the end of the day you know your body best, and if you’ve been struggling with an illness for years you’ll most likely know what works for you best. Back to those blanket statements again, huh?! 😀

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One day

I had one day feeling good. One day in a sea of shit.

Now the depression is back, and it’s brought with it the hopelessness, the worthlessness and the despair. Hello suicidal thoughts, I sure did miss you yesterday… 😥

I don’t want to do this anymore. How can anybody call this a life? And I’ve been dealing with this shit for 13 years.

I had a panic attack today, haven’t had one of those in a while, and I’ve been crying for hours. I’m going to need to drink a bath tub of water to rehydrate after this.

Please no ‘it will get better’ messages. It never gets better, it only ever gets worse.

 

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The struggle is real!

This month has been one of the hardest months of my life…and of course my birthday was in it XD

Seizures have really been taking their toll on my body, and my life. There’s nothing like a cluster of seizures and the resulting tiredness, confusion and lack of memory to completely fuck with you.

But more than that my bipolar had to shove its ugly nose in to remind me that it still existed and, even though these daily seizures are new, it was still the thing I had to be mindful of and fear.

Alongside seizures my bipolar made sure to make my mood plummet.

Overnight I went from being faintly chipper to battling against a tidal wave of depression. Literally overnight. This progressed within a day or two to me being swamped with suicidal thoughts.

I wanted to die, but I was lacking any form of motivation or energy to actually do the act – this (for me) was worse than being actively suicidal, as at least then you’re taking steps and although you feel totally desperate, you can see the end.

I had stretches of hours where I wouldn’t talk to my partner – no, in fact, where I couldn’t talk to my partner. I was completely numb, devoid of all emotion. Entire days where I didn’t get even the fleeting feeling of enjoyment and nothing was satisfying or made me feel warm or bubbly inside. I was dying. Several times a day, walking along, I would suddenly think to myself “Am I already dead? Is this why I feel nothing?”

Weeks passed in a blur of misery, the odd day that was going okay soon crumbling into despair and failure. Everyday I was crying, everyday I was telling my partner I wanted to leave. By the end my psychosis was picking up, and I believed with all my heart that my partner – my amazing partner who’s never anything but supportive – was a psychopath who was dating me simply to toy with the mind of a mentally ill person.

Finally today the despair lifted. Just like that.

People who haven’t experienced a serious mental health condition are never going to be able to understand the depth of despair or intensity of the emotions that sufferers have to endure. This is why Dr’s cheerily tell you something isn’t worth killing yourself over, why parents tell you to get a grip, and why friends family and loved ones seem to assume that your struggles aren’t as bad as you make out.

They are the lucky ones.

I’ve found when I’m surrounded by family or friends that don’t understand, the best things I can do are hug my pups, talk with my partner or, if I’m beyond that, search Pinterest.

Pinterest has some amazing quotes on there regarding mental illness, and I can always find ones that make me feel heard and understood. Here are some of my favourites:

This helped me see things from my partner’s point of view

This has become my all-time favourite quote 🙂

Another one that really resonates

This is so powerful, yet so simple

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Ugh. Ugh. And ugh.

I have had so many seizures today.

I think this has been my worst day, ever, for seizures.

The morning was fine, I was in a good mood and we had an awesome walk to the beach with one of our dogs…then it all went downhill from there >__<

I had a huge spurt of seizures, over half a dozen complex partial seizures and then a huge big one where I lost consciousness. And of course that was whilst my partner was out the house, which is scary in itself AND I dropped and damaged my laptop. God damnit.

Then I felt extremely sick and was sluggish, slow and spacey headed for hours and hours and hours afterwards. Couldn’t function well at all. Food helped a little, but my head wasn’t right the rest of the day.

Then late at night my head got worse again…I had about eight complex partial seizures, another big seizure, then my body was slow at coming back…I could move my eyes but couldn’t move my hands or talk, for about 45 minutes I couldn’t talk at all as much as I wanted to, then I had another big seizure.

This FUCKING SUCKS.

I hope tomorrow is better. Yesterday was great, I had a few partial seizures and that was it…so damn unpredictable 😥

Finally, we have a bit of an announcement…. *drum roll*

We are getting a fourth dog, and our fourth dog is going to be an actual official seizure alert and assistance dog. He will come from a very good breeder, with sound dogs that are all health tested, and I will be working with a nearby training facility and later a company that trains assistance dogs.

From there we will do our public access test, and I will have a dog that can come with me everywhere…he will alert me to seizures, ground me during seizures or dissociation, interrupt behaviours, alert to panic and anxiety, and block me from members of the public. Oh, and because he will be able to come to medical appts, I will be able to go to appts again!!

Yaaaaaaaaay ^__^

We have a Go Fund Me campaign, so if anybody could share this on their social media that would be so helpful…and if anyone wants to donate that would be absolutely amazing but please don’t feel you have to at all!

Thank you from us!

lovepup