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…

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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.

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.

PENE/PEM

PENE (post exertional neuroimmune exhaustion), or PEM (post exertional malaise), is probably THE most crucial symptom of myalgic encephalomyelitis.

PENE/PEM is the symptom that sets ME apart from similar conditions. Whilst it is very common for chronically ill folks with a variety of conditions to experience fatigue after activities, it is extremely different with ME, & in particular moderate or severe ME. With ME, even a small amount of activity (such as showering) causes a huge spike in symptoms that can last days, weeks, or months.

Symptoms during a crash include – exhaustion (often so intense you’re left bedbound – frequently unable to be around light, noise, often unable to speak); unrefreshing sleep (to the point where you wake up more exhausted than you would ever imagined feeling as a healthy bodied human); light sensitivity that means you can’t be around any light; migraines; seizures; body wide pain leaving you in agony.

The extent & duration of symptoms as a result of minimal activity, is what sets ME apart from having simply overdone it with similar conditions.

It’s easy to brush PENE/PEM off as no big deal, but in truth it’s extremely dangerous. Not only are the symptoms incredibly awful, but there’s a very real chance if you repeatedly push yourself too far, that your ME will permanently worsen. And yes, that is terrifying!

I am a cautionary tale, demonstrating this perfectly ~

I exercised heavily throughout my whole life, averaging 1-3hrs exercise daily. When I first began showing symptoms of mild ME in late 2015, I didn’t have a clue what was happening, so I continued exercising as normal.

My health declined at a rapid rate, to the point where I had severe light intolerance, experienced daily headache, severe neck pain, frequent migraines, & periods of being so exhausted I couldn’t open my eyes.

In early 2017 I began trying to get help for my seizures; I still had no idea about ME. I was having to live in total darkness due to the extent of my light sensitivity; I was in severe pain 24/7, having 20-30 seizures everyday, exhausted 24/7 (anytime I wasn’t out the house, I was bedbound) & frequently complained of “not being able to breathe” (air hunger due to POTS).

The NHS blamed all symptoms on my mental health & advised me to continue pushing myself to exercise. At this point I was doing 1-2hrs exercise a day, having constant seizures & brain fog so severe I couldn’t hold a conversation, & at home I was spending all my time in bed in agony. I couldn’t be around any light; we had blackout curtains up on the windows & our TV had to be dimmed alongside me wearing ski goggles.

As I continued to force myself to exercise despite crippling exhaustion & constant pain, I became sicker faster than ever. By February 2018 I was having to use a walker outdoors, & by April I became a wheelchair user.

Fast forward to April 2019 & I am still very sick. I’m pretty much bedbound, but I am able to go out the house a few times a week in my wheelchair. My seizures are drastically reduced (averaging 10-15 a day from 20-30) & if we plan my activities so I don’t overdo it, I can usually avoid the worst of worst symptoms.

The extent of fallout you get from doing activities (PENE/PEM) is unique to ME, & something every sufferer needs to try balance. If it hadn’t been for my OT appt being sprung on us this week (& having to go out to fill/print out forms the day before as a result), I’d have handled this week perfectly – the token system works! – but because we had a surprise appt & decided to go through with it, I’m now in a world of pain & scared I’ve damaged myself further 😕

The token system we use to prevent my ME worsening

Today is day 3 after the OT appt. I’m in the worst crash of this year. This evening my heart rate increased by 106bpm when I went from lying to standing.

My ‘fatigue’ is so bad that I crashed earlier & was unable to move/open my eyes/speak for over an hour. I’ve had two migraines, my entire body is screaming in pain, my joints are loose & my muscles weak.

All because I ‘overdid it’; & I only overdid it thanks to a text alert system failing (meaning I found out about an appt 2 days in advance!) 🙄

This is the activity that resulted in one of my worst crashes:

Saturday: 40 minute dog walk in my wheelchair, no self propelling

Sunday: 50 minute dog walk in my wheelchair, minimal self propelling

Monday: discovered I had an OT appt on Wednesday that I should have been told about last week. Had to go out for 2.5 hours; travelled to the town over via bus, to fill firms in & print them out at the library. No self propelling; severe symptoms all day.

Tuesday: rest day. Extreme symptoms.

Wednesday: 30min occupational therapist appt which involved having to go upstairs. 30min walk out the house in my wheelchair. Extreme crash, + migraine.

Thursday: extreme crash (huge increase in exhaustion, seizures, pain), migraine

Friday: extreme crash (huge increase in exhaustion, seizures, pain).

Idk when this crash will be over. I’m so bored. My donated, recently repaired, freewheel is itching to be used too – it’s killing me!!

Also the stress, exhaustion & insomnia has triggered hypomania too!

Fun times 🙃

Occupational Therapist yay-ness

Woke up able to access the stairs today, so we text my OT to say appt was on, & it’s done and dusted now! 🙂

She didn’t make me get in & out the bath as she said it was too dangerous 😂 But she asked questions, asked me to email my medical notes, & saw me go up the stairs.

Firstly – I should have a stairlift in 6 weeks!!!!!!! 😱🎉😭

But she’s also asking our landlord permission to add a handrail outside the front door, adjust the toilet (raise the height & add flip-up arm rests), AND to remove our bath & convert the bathroom into a wet room with a seat that helps me get up! 😱😍

Idk if he’ll say yes, but omg getting support & help feels SO BIZARRE! This is a local grant scheme that uses private occupational therapists, so the amount of help they can offer you is unreeeaaal. Like I haven’t even been referred for ANY help for my physical issues within the NHS, & this scheme just agreed to do many things that will make basic living so much easier for me.

She was horrified at some of the stuff we did, like to leave the house I hold onto the door frame & flop onto the wall – she put an * next to where she wrote we need a railing 😂

More good news, my freewheel part arrived & I HAVE A WORKING FREEWHEEL!! 😍

Hope I’m well enough to test it out tomorrow!

The best day

I had *the* best time out today.

We were out slightly longer than planned as the weather was gorgeous & it made me feel so alive and happy! I appreciate beautiful days so much more now.

We stayed out about 50 minutes and I just relished in the sun, blue skies, & countryside views from the road. It was GLORIOUS.

Yes, I pushed my body far too far. I even did several short bursts of self propelling, & it made me soooo happy!

Wow, what a beautiful day!

I crashed on the way back. Bandit (who was exhausted) was having to alert a lot, bless him.

When we got home I struggled to get up the steps into the house, Lyle had to lift me. I couldn’t get my shoes off myself & needed undressing.

Now I’m cold, exhausted, & my whole body aches. 7/10 on the pain scale. Resting up.

Token system & I fail

So. I came up with this token system recently:

And here’s why it’s so important.

I have 8 tokens per week, yes? In the past 7 days I’ve used up 28 TOKENS!!!!! 😱😂

Fucking huge oops 😌 That’s 3 trips out (2 less than 1hr, 1 unplanned due to a meltdown), having a shower, having our friend over (even with me staying in bed), 1 medical appt & dealing with the GP complaint 😂

Yeah. This is why my joints are so fucking loose rn.

This is why my ME is constantly getting worse, & I can’t even get up the damn stairs anymore. Because I’m a fool 😂 The token system will help me realise ‘how much’ I’m doing (for me), & should mean I’m not constantly feeling this bad!