The NHS fails. Again.

(Copied from instagram)

I am SO PISSED OFF. We both are. The fucking head GP didn’t ring, did he? 😡 *rage screams* 🙄 Lyle phoned the surgery this morning to check the call was happening & notes were on the system (they weren’t, staff then promised they would be by 5.30pm). At 5.40pm Lyle rang the surgery, double checking we were still getting called (entirely because they’re useless & we don’t trust them). Receptionist assured us we were definitely getting called, between then & 7.30pm.
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Since then we have done NOTHING but anxiously review our notes, goals, & wait for the phonecall…and he DIDN’T FUCKING RING. Honestly, angry doesn’t even come close – fuming, tearful, terrified…
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It is CONSTANT fuck ups from the NHS.

Seizures repeatedly blamed on MH by a handful of arsey GPs, leaving me with no support & having to find everything it ourselves. A GP that left me hanging for 6 months about severe ME; who wrote on my records after the first visit that I was “housebound due to anxiety”, then eventually referred me for phone CBT – for severe ME?! 😡 A dr who said she wouldn’t treat me as she’d “never had a patient with ME or CCI before”. Then – FINALLY! – we get a way to talk w/ the ‘good’ dr without waiting months, waiting ‘just’ a week for a phone appt…& he doesn’t ring even after we’ve checked TWICE that he’s going to?!?

I could cry.
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I am SO SCARED for my health, & I CAN’T GET HELP FROM THE NHS. What am I meant to do?! We have no money to go private. I’ve emailed a neurosurgeon in the US who specialises in CCI, but I need £300 just to talk w/ him about my scan, & his receptionist hasn’t even replied to tell me if he’s taking on new patients yet. I’m so desperate for help & I DON’T KNOW WHAT TO FUCKING DO.
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And now I have a killer headache from all the stressing & waiting for the shitty call, too 🙄

There’s nothing we can do tonight, everywhere is shut. Tomorrow Lyle phones PALS & start a complaint, then Lyle phoned the surgery & demands to know wtf is going on. Ugh 😡🙄😭

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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.

A response to an article

Copied from my FB –

An absolute shitwit of a ‘journalist’ recently wrote an article with no scientific backing saying that myalgic encephalomyelitis is a mental illness. (I’ve been writing this for the past day, so it’s a bit delayed 😂)

If I had the energy, this would be incredibly upsetting. I’ve been living with ME since 2016, but at first I didn’t know. My early symptoms (extreme exhaustion, devastating migraines & light intolerance) were brushed off because, guess what? The NHS blamed them on my mental health!!

I increased my exercise, as advised by them, & over the next 18 months my health declined rapidly. It got to the point where I was stuck in bed crying in pain, & had to start using a wheelchair. Once I discovered I had ME (& thereby POTS, or postural orthostatic tachycardia syndrome, as a by-product) I was horrified to learn that exercise & ‘pushing through’ ME is a sure fire way to end up with a more severe form of the illness.

And this is indeed what happened. I’m now considered to have severe ME, although I’m lucky in that I can eat unaided, handle controlled lighting, & generally communicate.

I’m bedbound 98% of the time. I’m lucky if I can sit up without having seizures. I’m in constant pain. I can’t stand up easily unaided, & I can’t stand up or walk for very long at all. I’m lucky if I make it out the house IN MY WHEELCHAIR twice in one week. I can’t handle discussions, socializing, bright lights…ME means I deal with POTS, seizures, pain & crippling fatigue.

The idea that sufferers ‘want to be like this’ or are lazy (another argument made) is bloody ridiculous. I LOVE being outside & I miss hiking every damn day. I miss walking my dogs, I miss being able to train my dogs, I miss being able to do things with Lyle…I miss the world.

It’s time to stop being ignorant twits & start paying attention to what science is showing us – ME is a complex neurological disease, CBT is ineffectual & GET (Graded Exercise Therapy) is extremely dangerous. We need more biomedical funding, more education for drs (esp GPs who see patients first) & less ignorance!

The NHS & ME

Mostly copied from my instagram

(I’ve been writing this for an hour & I’m very tired, so I’m just gonna post and hope it makes sense 😂)

I’m always shocked by the NHS’ complete disregard for such a life-alerting (life destroying?) condition as myalgic encephalomyelitis. It’s truly vile.

ME is an often disabling & potentially life threatening condition that causes a vast array of symptoms, from seizures to being unable to eat unassisted. Many sufferers who have moderate-severe ME are housebound, bedbound, & unable to take part in the simplest of activities.

The NHS invested an extortionate amount of money into treatments that we now know are (at best) useless, & at worse immensely harmful to ME sufferers. These are graded exercise therapy (GET), CBT, & the PACE trial – pacing can be helpful, but the research was biased.

They also, somewhat incredibly, advise against resting when your symptoms are worse.

Rest is incredibly important to those with ME, along with listening to your body & not overdoing it!!

The NHS refuse to accept this though – after all, so much money was invested in GET 🙄

Secondly the NHS views ME with great stigma; patients are disregarded, bullied, abandoned, & viewed as having a mental health condition – ME is *not* a mental health condition.

Why are CAMHS treating ME?!

ME is a devastating multi-system disease, often referred to as a neurological condition – it can affect your MH (what disabling Condition wouldn’t?!) but is not a MH condition.

There’s no cure & many people have been reduced to a shell of their former selves due to crippling symptoms. It’s about time this abandoned community got the care we deserve…