Ugh, life

Tomorrow is Lyle’s actual birthday & I couldn’t be happier we celebrated (repeatedly) earlier, as I am just not in a good place.

I’m hypomanic, & I’m so frustrated with being stuck in bed all the time. I woke up from a big nap today thinking it was morning, & my brain immediately jumped to “I’M LEAVING THE HOUSE TODAY!!” 🙄

Like, no. You can’t, shut up!

Yesterday despite it being a rest day I crashed so bad in the evening, & couldn’t open/control my eyes properly, move, or speak – for several hours I was too exhausted to do anything. I absolutely hate ME, but hypomania in addition is literally the worst…I’ve done really well this month, I’ve only left the house five times, & I don’t want hypomania to ruin that & cause a potentially permanent relapse 😭

Tomorrow Lyle’s going out for a meal with some of his family, & I’m staying home…I’m so jealous 🙄 Hopefully I’ll just be able to sleep.

I feel like soon, life will improve so much – thanks to the OT & grant scheme we’re getting a stairlift (30th of this month), wet room, hand rail, & with savings we recently bought a power pack for my ♿. I’ll almost definitely be able to do more overall with these adaptations to the house, especially as one of the smallest activities that triggers the most fallout is climbing the stairs 2x a day.

However that doesn’t really help when I’m currently irritated af, just want to GET OUT, but my body is incredibly physically exhausted… 😕

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A day out – you don’t look sick?!

Today I spent a few hours out the house, & it made me think once again how disabled/chronically ill people are desperate for ableds to think beyond what they see when we leave the house.

I have severe Myalgic Encephalomyelitis, which means I function at 5-10% of a healthy person. As a result I am unable to go out much. When I do go out, I’m feeling as close to MY version of ‘best’ as possible, & that is the only time the world sees me – the rest of the time I am bedbound with excruciating symptoms.

For example, this is easy to see:

What a lovely happy time out! And of course, parts of it were lovely, & super fun…but at NO POINT was I symptom/pain free. Throughout the entire time I was having seizures, struggling with the environment, in pain etc.

Here I am having to lay on the ground to try reduce dysautonomia symptoms & enable me to breathe:

Next we have a video, & I’ll explain it below –

In the first clip, I am having a complex partial seizure.

Although we don’t know for sure my seizures aren’t epileptic, I don’t think they are (been waiting on the NHS for 2yrs to get them tested, & then tested again after an abnormal 20min EEG). However they 100% ARE physiologic, which refers to seizures triggered by physical things going wrong inside my body.

This is thanks to my ME & orthostatic intolerance. The easiest example is my heart rate; my heart rate increases by 80+bpm when I stand, & by 20-30bpm when I sit. These fluctuations trigger seizures, syncope (passing out) or blackouts.

On the train home today I had a cluster of seizures, resulting in literally a 30+ min blank I can’t remember, & about 15mins of constant seizures. When I have a lot of seizures in quick succession, I lose myself & get an amusing shocked expression – I was totally out of it here, I stumbled right after Lyle stopped recording “i don’t know how to human” 😅

Earlier in the day I also had a seizure on the steep ramp that goes below the platforms of our local train station, & apparently I started to fall out of my chair. My partner had to hold me up whilst also keeping hold of my chair & stopping it from rolling down the ramp 😂

In the clips of my partner talking, he’s explaining how something as simple as taking off a slip-on boot is extremely difficult. I didn’t have the strength/energy to pull my leg away to help slide it off as I was in a crash, but if he tried to wiggle the shoe off, my ankle partially dislocated. I couldn’t verbalize what happened/what I needed, so I was just yelling “no no don’t, DON’T, give give!” 🙄😌

Finally we have clips of Finley alerting repeatedly, the evening after a few hours out the house. He was constantly letting me know I very much wasn’t okay!

These are the parts abled people (especially friends/family members) don’t think of when they see you out & about, or see photos online. They assume we’re magically better, that because we “don’t look sick” in the photos, we’re symptom-free…it’s simply not true. It also needs to be understood that the world only sees us when we’re at our best (which is still extremely disabled/unwell!).

The number of times disabled people are told we’re “lucky” we “get to” rest/stay home so much (I had an online [ex] friend tell me this literally a week ago), or that they “wish they could spend all day in bed too” is truly disgusting.

Dr update

Woke up from a nap to Lyle finishing up the phone appt with the GP.

Supposedly went very well, but after our initial ME appt last January, we’re all too aware appt vibes CANNOT be trusted, as #doctorsaredickheads 🙃

But Lyle was on the phone for over 20mins 😅

He went through my symptoms – seizures, orthostatic intolerance (inability to sit without losing consciousness, HR increasing by 80+bpm upon standing), chronic pain, migraines, PEM/PENE, how limited my life is, & he was able to say a private occupational therapist had evaluated me & prescribed a stairlift, wet room, & railing (still not sure we’re getting all 3, not heard from the grant people or our landlord).

Lyle said the dr seemed pretty horrified at how we’d been messed about & left to struggle alone so long, which is a good sign. She could see we’d been trying to find answers for my seizures since 2017, that I’d had an abnormal EEG reading, & that nothing had happened since. She said it wasn’t acceptable that I’d been left with no diagnosis in this condition. She’s talking with the head GP of the surgery to find out how we’d go about getting an ME diagnosis with no specialist, & we’re calling back mid next week.

I so, SO want this to actually be positive & a step in the right direction…

Resting works, who’d a thought?!

After 5 consecutive rest days (by which I mean confined to bed 99.0% of the time), & 8 out of the last 9 days being rest days too, today I felt the most human have in ages.

And by that, I mean I felt I had the energy to – go upstairs to the bathroom, have a shower, put toys in a new mouse cage (from bed) all within 2hrs after waking; then after many hours in bed and a nap, I was well enough to spend some time in the pet room at night, & say hi to my bugz.

This is huge. I’ve done these things recently of course (there’s not really any escaping needing to go to tree bathroom), but I knew I was forcing myself & depleting what little health I have. Today I felt like I could do them. BIG difference. I even brushed my teeth at the sink, rather than my partner having to bring everything to bed!

My pain has been bad today though. I’m going through a bad spot with my fucked up neck, which means daily severe headaches & almost back-to-back migraines 🙄

Add to that I woke up from my nap today with my shoulder out, & it hasn’t been fun.

Here’s a before & after my partner got it back in!

But! A ‘good’ day for energy is worth celebrating 🙂

To know that, despite how little I was doing these past 12+ months, I was still pushing my body way too far & making myself much sicker is, unsurprisingly, eye opening.

Yes, pretty much all of my life is spent indoors & in bed now, but to have any semblance – any scraps of ability – & a reduction of symptoms makes it worth it. I can’t say how good it felt to make it up to the bathroom with only a few seizures today, & actually getting to shower (yes with seizures, dizziness, palpitations, pain – but no passing out, no air hunger, no crying because the symptoms are so bad) was incredible.

Happy fucking times 😂

ME Awareness Month

May is #MEawareness month.

ME is a neurological disease which affects every part of the body – cognitive, cardiovascular, respiratory, gastrointestinal. It is not ‘CFS’.

We need more awareness of this illness as, if sufferers are told by medical professionals/family/friends to push through their symptoms in the early days, they can end up EXTREMELY sick – this is exactly what happened to me.

I began experiencing symptoms in 2015; my symptoms were brushed off & I was advised by professionals to ‘continue exercising’. In the space of 1yr I went from being able to walk around the house, help with housework, & spend hours walking outside the house EVERY DAY – to being 95% housebound, not being able to be around any light, having seizures, & not being able to walk without extreme cardiac symptoms.
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Over the past few years it has been a steep learning curve. I’ve been bullied, belittled & ignored by the NHS, so have had to work out for myself what makes me worse. I’m 90% bedbound, struggle severely with cognitive issues, have 24/7 pain, & have severe orthostatic intolerance – sitting up leaves me unable to think & having seizures; standing results in my heart rate increasing by 50-100+bpm. I have periods where parts of my body become paralyzed; I lose my taste for days at a time; my brain is fuddled & I talk absolute nonsense.

I battle intense symptoms 24/7, but these are much worse following activity. I’m unable to bathe alone, cook, clean, do much of anything. I’m very much still grieving for the life I had, & still getting used to a life of so little.

I understand I must not push myself. Overdoing it will result in my condition deteriorating, & if this continues, my ME could end up fatal. This is terrifying.

I’ve lost so much to ME. My health, my life, my hobbies – integral parts of who I am, what makes me me! I’m unable to do anything for myself. My partner has to do everything. I experience abuse & stigma from every dr I see; myself & partner are dealing with this terrifying ordeal entirely alone, & it’s awful.

ME is much more than feeling tired. It’s not a joke, it’s not a mental illness, it’s not laziness. GET could kill us & CBT will do nothing for our physical symptoms.

We need more awareness & better (ANY!) education for medical professionals 🙄
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The book in these photos is “Caring for an ME patient” by Jodi Bassett, who had severe ME & sadly passed because of it. It is an amazing book & I highly recommend it.

Sad days = pet pics

I’ve had a really difficult time recently, both physically & mentally.

I’m hugely overwhelmed & struggling to manage my autistic meltdowns without being able to hike anymore. Being stuck inside takes a toll on me mentally, too.

I can get out in my wheelchair a few times a week, but it isn’t the same…all the decent walks are inaccessible, which means I have to stay by/on busy roads (leading to sensory overload & pushing me closer to meltdown); I also really miss the exercise part of hiking, I can’t even self propel. Hiking has been my entire coping mechanism since I was less than 10 years old, so it is a huge loss. They were *the* way I kept myself in check; the way I de-stressed, avoided meltdowns, enjoyed life. It sucks that they’re entirely gone now 😞

Yesterday I had 3 huge meltdowns. It was extremely physically exhausting. I am constantly on the precipice of an autistic meltdown atm as I’m so overwhelmed & have no way to really unwind…it’s very hard being constantly on edge, meltdowns take a lot out of me (& I don’t have much energy because of ME!!), and I feel extreme guilt afterwards for my behaviour during a meltdown.

It’s not nice for me or my partner. Yesterday I was screaming, crying hysterically, I left my wheelchair & collapsed with seizures…afterwards on our way home I had a resulting ME crazy (seizures, freezing cold, too exhausted to speak).

Yesterday was an absolute nightmare.

Life in general is just…difficult these days, too. Dealing with the constant loss & struggle is hell, then you factor in the physical difficulties & pain and it’s just…shit 😂

Take today for example, I couldn’t go up to the bathroom until after midnight due to crippling exhaustion and seizures/being unable to breathe when I moved. Like, that is AWFUL 😭

My exhaustion is extreme, I can’t even sit up without seizing & being so foggy I can’t think/move…on the positive we’ll be getting our stairlift put in within the next few months, hopefully. It will be so nice to be able to go to the toilet when I need to! But I still grieve for the fact that I need a stairlift…it’s such a roller coaster.

Whilst I can’t get out & am so stressed, I’ve been spending a lot of time with my partner & pets. Here are some cute photos of my fur kids!

The piggles got an extension added to their cage today, a 3ft dog crate tacked onto the end. They’re zooming about so happily 😊

Difficult days

I came out of the crash 3 days ago, but obviously I’m ‘overdoing it’ (by that I mean basically doing fuck all 🙄), & running myself into the ground again.

I’ll never learn.

It’s hard. Especially because I know I’m supposed to be keeping my heart rate under 100bpm to give me the best chance of my ME improving, but how am I supposed to do that when sitting down & brushing my teeth puts it at 150bpm?!

My exhaustion & pain are creeping back up. I’m having a really hard time sensory-wise, & have had a lot of meltdowns for me this month (9).

Here’s my April stats:

Today has been one of those days where I’m mourning & full of grief. Those days where you’re really, truly sick of being disabled, y’know?

We all get them, it’s fine to get them, it’s totally normal…but it SUCKS!

God, I miss so much from my ‘old’ life!

I miss when I could shower every day.

I miss when I could get my own drink, run up the stairs, dress myself.

I miss when I could get out into the world EVERY DAY, when I could hike for hours *every day*. I got such joy from hiking, it was so calming & positive for me. I miss it so much!

I miss not having to rely on my wheelchair.

I miss not having to worry about terrain or steps.

I miss being able to walk hand in hand with my partner, sit next to each other on pubic transport, cuddle, talk – without having to yell over my shoulder because I can’t turn my neck easily, or constantly having to repeat things.

I miss being able to walk my dogs, play with my dogs, manage my other pets.

I miss feeling energised & excited at each new day, instead of exhausted and…’stuck’.

I still get out, I know I’m lucky. I have a fantastic partner.

I know I’m lucky.

But I’m still mourning a huge loss. I’m bedbound far more days than I’m not. I’m never symptom free, I’m in pain 24/7, 99% of my time is spent in bed.

I’m still grieving hard.

I’m grateful I can still get out on these short, rare adventures.

I know I can’t do even a tiny fraction of what I could 5yrs ago. I know when I push my body, even by doing such tiny slight things, I’m making my chance of improving slimmer. I know it’s extremely unlikely I’ll even recover to 70% of my old normal.

But I feel like if I try do even less, my life might as well be over. For me personally, I couldn’t live doing less.

I need to get outside, to manage both my autism & my mental health.

I need to find a balance that’s doing enough for me, but not doing too much for my ME, but it’s hard. Such a fine, fine line 🙄

Sigh.