A handrail!

Copied from my instagram:

Yep, that happened 😂😌 But hey our hand rail is here unexpectedly! No idea what it is or where it’s going, but 😅
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After UC messing up last week (phoning to make sure we were attending an appt which was dated LAST YEAR, & which we had LAST YEAR), they gave Lyle a time today for a work coach to ring. He phoned UC this morning whilst I was asleep to try give me an easier time (benefits are pretty much as stressful on me as the NHS), but the work coach still has to ring this afternoon 🙄 HOWEVER the person he spoke with was absolutely fantastic (1st time for everything 😱). She saw the amount of PIP I was getting, & was genuinely horrified that I had been left with so few points with my health how it is (I get highest mobility rate, but for planning journeys not limited mobility, & zero care rate – bearing in mind Lyle does all cooking, cleaning, helps me on the loo, in the shower etc). Obviously we’ve always known I qualify for way more, but as the appeal process is so stressful & dangerous (and we have enough to scrape by), we let it be. The UC woman said she understood this, but that “PIP isn’t a charity, it’s something you’re entitled to & deserve to get” 😱
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So that was pretty incredible, & now Lyle’s talking to me about starting a new PIP claim (ahead of my review in February, which I’ve been freaking out about since last summer) once we’ve collected our recent dr info. Weirdly I’d find adding more info/new conditions to PIP easier than waiting for February, because I’d be in control & wouldn’t be hanging about not knowing when/what will happen. So once we’ve tied up a few loose dr ends, we’ll seriously consider this.
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And finally, today is the last day that the head GP is supposed to be ringing us (remember he was supposed to ring twice last week, but just didn’t?). Because Lyle doesn’t trust him AT ALL, he’s gonna ring the surgery late evening & remind them it needs doing.
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My head’s swimming, I was already spacey from singing. Then Lyle told me all this 😲 3rd bed day today. I’m exhausted, bored & now STRESSED.

[Edited to add photo of my new badass handrail, courtesy of my partner!]

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My experience of PEM/PENE

PEM (post exertional malaise), also known as PENE (post exertional neuroimmune exhaustion), is the key feature of myalgic encephalomyelitis, and differentiates it from similar or co-occurring conditions.

PEM/PENE is not simply “feeling tired” after doing an activity. It is an extreme increase in symptoms, & is generally a delayed reaction (usually by several days). It is also a prolonged state, & takes a long time to recover from (weeks & months rather than hours), and can even result in a permanent worsening of ME.

Here is my experience with PENE:

It hits 24-72 hours after ‘big’ activities (leaving the house, showering, appts), OR if I have seriously pushed my body too far, it can hit immediately after or during an activity.

This happened most recently when I had two days out with family in a row; on the second day I crashed within an hour of leaving the house with them. I lost the ability to react to my surroundings, couldn’t talk/respond, felt freezing cold, & needed immediate sleep. This is very typical of an immediate crash for me, although sometimes a migraine is involved.

Currently I am experiencing abysmal PEM/PENE from recent activities. Here is what it is like for me:

  • I’m having a LOT of seizures, & am feeling ‘spacey’ & on the brink of a seizure constantly
  • My exhaustion is unreal; I can barely move my limbs, can’t hold a drink, & am having to crawl to the stairlift to get to the bathroom
  • Cognitive difficulty is extreme – I can’t focus, my words get jumbled & I talk jibberish, I can’t hold conversation
  • Have lost my sense of taste
  • Experienced temporary loss of the use of my legs – I couldn’t move them at all
  • I’m craving carby food (big sign of relapse), so we’re getting takeaway 🍕 for the first time in weeks as I neeeeed it

Even though 85% of the last 4 days has been spent sleeping (as a result of pushing myself too far) I am –

  • beyond exhausted
  • desperately need sleep
  • can’t think
  • & currently my eyes are streaming

Life with ME everybody 🙄

#doctorsareSTILLdickheads

In case anyone is wondering what my day would look like summed up in a photo 🙃😂

I’ve been in so much pain all day. My exhaustion is so bad I’ve spent about 6hrs total today lying in bed, lights off, eyes closed, doing nothing but letting my body rest. The rest of the time I’ve been cuddling my partner or reading.

NHS update: so we’ve been trying to get help for a particular health condition, myalgic encephalomyelitis, since January, only to be met with a bullying, condescending dr & the need for multiple complaints.

For the last 3 months my partner had been talking with the head nurse & she has been bringing my case up during weekly meetings, finding drs that would be willing to try help, & read the medical info we’ve gathered regarding my condition. She’s made promising noises week after week, but there’s been no progress, every week we call & are told the same thing – “phone back next week”.

About a month ago we spoke with a GP who wanted to help but “didn’t know anything” about my condition.

THAT IS HE PROBLEM, NONE OF YOU DO! THAT’S WHY WE’VE COLLECTED ALL THE MEDICAL INFO YOU NEED – THERE IS NO SPECIALIST NEARBY, THE DISGUSTING DR WE SAW IN JANUARY FINALLY CHECKED FOR THAT (then gave us a number for CBT – for a serious disabling physical condition – & shrugged his shoulders 🙄) WE HAVE NO OTHER OPTION, WE JUST NEED A GOOD FUCKING GP!!!

So. That GP said she would get the head GP to call us, hoping he would know more (he won’t) or that he will be willing to put in more effort to learn & help (he probably won’t 😂).

We had a phone appt scheduled several weeks from then, which was last Thursday. Guess what? He didn’t ring 🙄

When we phoned the surgery on Monday (giving him Friday in case he’d ring a day late), the receptionist said she didn’t know why the GP hasn’t rung us. She said he would call us today.

He didn’t ring.

So now my partner’s gonna have to make a physical appt (which is usually a months’ wait, but maybe he can argue it down as they’ve been fucking us around since January) & go in himself.

I am beyond sick of this stupid fucking cat-and-mouse BS now. This is how every interaction with the NHS goes; constant fuck-ups, no apology, no help.

I JUST NEED HELP!!!

I’ve been screaming this for 2yrs now, & all I’ve seen is #doctorsaredickheads who refuse to listen (& immediately blame my very obvious physical issues on my MH), & waiting lists that last years.

I’m still waiting to check if my seizures are epileptic. I first tried to get help for them way over 2yrs ago 🙃 They were repeatedly blamed on my MH by GPs who knew nothing about seizures. Then I saw a fantastic neurologist, who couldn’t believe my treatment & wrote that my seizures seem to be complex partial seizures – she wanted an EEG, a 24hr ambulatory EEG, & me started on anti-seizure medication. But she left, & now I’ve just been lost on the waiting lists, with a few fuck-ups along the way.

I know now that my seizures are almost definitely *not* epileptic, so I’m not as scared as I used to be. I know they’re physiologic & I know what triggers them (ME, dysautonomia, spine issues) – but back in 2017 I hadn’t a clue, & I was terrified. Would I get brain damage from them, would they develop into tonic clonic seizures, were they caused by a tumour?! I lived in such fear, & along with not knowing that I had ME I was unknowingly making myself sicker.

Imagine if I hadn’t found answers by myself along the way. I would still be living with that fear, with zero medical support, & having 25+ seizures a day 🙄

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… 😕

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.

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 😂