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Autumnal adventure!

The weather has finally cooled & today I’ve felt better than THE WORST, which is how I’ve been feeling for so long now…thank you autumn!! 😌

My mental healthhas also finally improved…I really hope this is here to stay!

Today we had SUCH a lovely trip out! We took the bus to the seaside town 10mins away, walked along the prom & the jetty, then walked to a nearby forest park.

We had the best time, & because the entire place (forest included!) was wheelchair accessible, I got to save my energy! I enjoyed the day a lot more as a result, & was able to self propel more than usual 😊

Good days are rare, & so worth cherishing! 😊

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New ideas

Hey all.

Currently feeling very unwell as the weather is super hot again today, & I have an awful headache due to POTS making my blood pressure jump like crazy…I’m hoping eating will settle this, but when you have intense nausea it’s hard to force yourself to eat πŸ˜₯

Anyway, I gave my about page a much needed update! You can check it out here!

I’m also toying with the idea of doing a podcast πŸ€” Basically it world just be me prattling about whatever I like haha – my conditions, the NHS, my pets, hobbies etc. I’m kinda excited, & like the idea that I’ll be able to do it from my bed – vital for a spoonie HAHAHA!

Oooh I smell food coming…

2

Things feel like they’re coming together

I had my ECG & am waiting for the results now. I think as soon as they come in I’ll have to have a GP appt, & then I can ask for a printout of the cardiologists report so I can have my own copy of that too.

They give you a diary to fill out every time you experience symptoms; it had 25 slots & by the end of day 1 I had completely filled it πŸ˜‚

I had numerous seizures related to my heart rate & lots of heart rate spikes whilst wearing it, so let’s hope I get a knowledgeable cardiologist who has actually heard of postural orthostatic tachycardia syndrome, & who will write a good letter to my GP!! It will also be my first GP appt seeing my Dr in my wheelchair, & even though my chair has been fantastic & given me some semblance of a life back, I’m worried how my GP will react to it, because y’know what the NHS is like πŸ™„

I finally have my disabled travel (rail) pass on the way, yaaay. And that should be here in 4-6 days πŸ™‚

I’m still waiting for my 24 hour EEG appt to come through…I guess it’s good to double check for electrical activity, but given I’m 90% sure my seizures are physiologic (caused by lack of oxygen to my brain & vastly dropping blood pressure, due to POTS), I’m not too worried/excited about the results. I kinda wish we’d had the opportunity to fricking talk with the neurologist, so I could explain about POTS, but again – y’know what the NHS is like! My first neurologist left after my first appt last year, & we haven’t seen/spoken to another since as there’s apparently a shortage of neurologists…so basically he has no idea about any of my new medical diagnoses or investigations.

Also we tried to swap which hospital my neuro appts get referred to…basically the stupid fucking Dr sending the referral last summer (who was an uber bitch!) sent me to the neurologist hospital that is 90+ minutes away, rather than the one that is 15 minutes away…like?! πŸ˜‚

When one of the nurses told us we could have been sent to the local hospital, & asked why we were having to travel so far, we were flabbergasted! We asked her how we’d go about switching, and she said it would be easy & to do it through our GP surgery.

We get in touch with them & start the ball rolling, & I get an email a few days later saying if we ask to be switched, the whooole process will start from scratch & I’ll be waiting ten months to see a neurologist!!! What the fuck?! But this isn’t even our fault?! πŸ˜‚

It should be noted that Dr Footitt has never met me & only knows my case from notes on my file…so why a Dr at the nearby hospital couldn’t pick it up from my file like he did, I have no idea πŸ™„

The only reason it’s worth us switching is because we literally *can’t* get to that hospital unless we get a lift, which requires my parents taking a day off work…and obviously that’s not really an option.

So. We’re gonna try get the EEG out the way & get the results, then start the process of switching…eesh πŸ™„

Mentally I’m still a huge mess, & all the issues last February with benefits & having to have so many appts with the NHS (BOTH of which trigger mood episodes, panic attacks, & scheme anxiety) have still left me battling my bipolar in a way I haven’t had to in so long. And yes, it’s mid-July now, five months later, and I’m STILL unbalanced from that πŸ˜₯

Currently I’m in a depressive episode that started at the end of June, but I’m fighting hard & Lyle is doing all he can to help…we’ll get through this!

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Broken

I had another broken day today πŸ™„

Yesterday we tried to have a nice day, it was an epic fail…I almost ended up in hospital due to having so many seizures, the day was awful & very much ruined. I was left asking myself why I even try to do anything/leave the house anymore πŸ™„

Being so physically unwell obviously takes a toll mentally, and after yesterday, today I’ve just been struggling hugely. I wanted to hurt myself, I felt suicidal, same old bipolar crap. Add to that a pet died unexpectedly and my bf’s parents are being absolute dicks…and yeah, it’s been a bad day.

I started to feel a little bit better this evening. I just get tired of all my disabilities have taken from me. I get tired of not being able to leave the house, or have a life, and yesterday showed that so clearly.

I posted this photo yesterday online. This was me after I’d attempted to leave the house; I’d had 29 seizures, felt dreadful, and a migraine had hit me as a result of the high number of seizures. I might have an invisible disability, but that doesn’t make it any less real…

I can’t remember if I posted about this already or not (I have no memory anymore, my brain can’t really produce new memories very well) but my bf called the hospital about my MRI results, and also asked about my EEG. He was told by the hospital that’s too far for us to travel that they have sent off two referrals to the local hospital for my EEG, because they want it done asap, but the local hospital just aren’t acting on it…how is that okay?!? 😩

I’ve had significantly less seizures today but my mood is in the pits…I’ll take that over the other way round, I guess!

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Everything is an uphill battle

I’m feeling totally overwhelmed at the moment, and depression is engulfing me again.

Yesterday marked 3 weeks since our PIP assessment, which we were led to believe that, because it was adding a new health condition and not a new claim, we would get the results within 3 weeks.

We got a letter from PIP, and opened it feeling sick with nerves…and it was this!!

Like…no!! Don’t say ‘we have your information’ when you’re supposed to be saying ‘we have your result’!!!

So my partner went to call the number to ask how long, and the automated script whilst you’re on hold has been updated to say you should wait at least FOUR WEEKS for your result now…like for fuck sake!! This is do taxing on my mental health, I just want it over with 😩

One of the most disgusting thing about benefits is how hard they make the process for disabled people. The people who need the most help!

This entire process has been a nightmare, and alongside it there’s been the Universal Credit process which has been going on for 10 months, & is just as bad!! I just want to know if we’re going to get the money we deserve. I want to know we’ll get money so we can not just ‘scrape by’, but LIVE. So we don’t have to worry. I want to know we won’t have to rely on a foodbank again, that we won’t lose our house, that I can get my disabled bus pass!

I’ve jumped through every hoop & it’s been so mentally AND physically taxing…so the fact we have to wait longer than they first said brought me to tears. UC has no end in sight, but PIP should’ve been over.

Anyway. That was yesterday.

Today everything feels like a very intense uphill battle. I’m feeling completely overwhelmed, even though there are no ‘scary’ plans today, no need to feel that way. I want to cry thinking that the instant I leave the house I’ll start having numerous seizures…what is my life?! What is the point?? Why am I continuing to live when my life is just being in a gloomy house?

Finley, our puppy, comes home at the end of this month. I need him so badly. Just gotta hold on.

Yesterday we went for a short walk around the forest at the end of our road. I didn’t wear my goggles, because if I do I miss out on the beauty of nature, I miss out on partaking in one of my favourite hobbies, photography!

I should be wearing my goggles anytime I’m outdoors, really. But I hate them so much that I really only wear them when I’m around lights (shops, restaurants, hospitals, buses, trains, town etc) or if I’m having a really bad day.

When I’m out in nature, I want to *feel* it, experience it…and you can’t do that wearing goggles that turn the world incredibly dark, steam up, and remove the beauty πŸ˜… Seriously, when I wear my goggles the world is muted to one dark-blue colour, there is no beauty.

If they stopped all my seizures outdoors I’d probably wear them all the time, because then it would be worth it. But if I’m gonna have seizures anyway I’d rather enjoy the beauty, thanks!

I’m so tired of not being able to do anything, not being able to go anywhere. Of having dozens of seizures everyday, just from being indoors and going on ONE WALK a day! I miss going places and doing things, not just walks…I miss days out, shops, visiting exciting places. I don’t remember the last time I was in a shop, even a small one, it was weeks ago.

I miss living.

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Fall-outs, weird days, depression be gone

Sorry I haven’t been posting much, I’ve been going through such an intense depressive episode 😫

It’s been really tough, I’ve shed a lot of tears and have spent most my time feeling guilty & hopeless. Add to that family arguments/conflict on both sides, the stress of PIP assessments and other benefit crap, the daily struggle of various disabilities, and the fact I’m still grieving for our dog that was PTS before Christmas…and yeah, things have been awful.

But I hope I’m kinda climbing my way out of it.

It was supposed to be my MRI this weekend, but because of how fraught things were with my parents, we phoned up and delayed it so that it could take place at the hospital 15 minutes away instead of 90+ minutes away. My EEG & neurologist appts should also be there now, too, so that’s good πŸ™‚

In order to switch where the appts were, my partner had to ring the following:

Call the neuro switchboard. Be put through to my neuro’s secretary. Be referred to the neuro switchboard again. Be transferred to the secretary AGAIN πŸ˜‚ Be pushed back to the neuro switchboard for the 3rd & final time, then referred to the x-ray department HAHAHA πŸ˜ΆπŸ˜‚

The nurse we finally spoke to, in order to switch where the referral was, couldn’t believe we’d been sent to their hospital when our local is so much closer…we were like, “yeah, us neither!” πŸ˜…

I’m really, really glad that’s sorted though.

I’m knackered tonight. Seizure cluster this evening exhausted me, so I’m heading to bed now…hoping this post makes sense…?

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Oh ffs

Thanks to the inordinate amount of stress I’m dealing with atm, it was always gonna trigger a depressive episode.

But it still really, really, REALLY sucks that it’s happened.

This is the last thing I needed right now 😞

I’m tired of my life being so, so limited. 

I’m tired of having dozens of seizures every day and living with all the after effects. Of living in fear. Of being unable to do anything for myself. Of having so little support from the NHS. Of benefits HEAPING stress onto my already difficult life. Of family & friends being totally oblivious to how awful everything is. Of my parents lacking all caring. 

I’m sick of everything…

I’m already scared of how this depressive episode is gonna go.. I hope it’s ended before Christmas 😭