Lizzy H
@hopefullizzy
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29y/o creative, with complex health issues🤞🏼ME/CFS biomedical research. Passion for the wild, for kindness, and helping all people have a voice. Co-author✨
Bristol
Joined April 2013
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In 3weeks I turn 29.
I’ve never had a relationship. Never been on holiday with friends. Never finished my education. I have never had a day out on my own. Never been out to work. Never lived away from my family.
It’s 13years since I went out on my own.
I have
#MECFS
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I had my appointment with the private cardiologist yesterday on videocall. 25minutes, listened to, everything explained so clearly, questions answered and questions asked, referrals to 3 other specialists, and multiple possible treatment plans. “Let’s throw the book at this and
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I am disgusted
@RishiSunak
you’re saying that disabled/ sick people should need to provide medical evidence. Clearly you have NO idea about what sick people have to do to prove their situation. We ALREADY have to send in multiple medical letters of evidence, & SO much
#BBCDebate
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“1 in 22 will have a major cardiac event within 12months of catching covid. 1 in 5 will develop
#longcovid
following their infection. One American scientist says ‘we don’t know everything about long covid yet, but what we do know is downright terrifying.’”
#CovidIsNotOver
Highlights Baroness Brinton speaking at the Long Covid debate in the House of Lords 17 Nov 2022. She describes a study that is only looking at psychological factors as "breathtaking".
#longcovid
#mecfs
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I will never understand why in PIP (personal independence payment) for disability, in the “toileting needs” section, it never takes into account menstruation/periods.
It always asks “bladder and/or bowel” and never this.
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In 3weeks I turn 27.
I have never had a relationship. Never been on holiday with friends. Never had a job. Never finished my education. I have never had a day out on my own. Never been to a club. Never lived away from my family. It’s 11yrs since I went out alone.
I have
#mecfs
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Kind of wishing they did retirement villages/ supported living for young people with extra needs. So there was like a fun, vibrant community of youngish people to live semi independently…
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See if some of these things can improve some individual aspects of health and quality of life.”
It shouldn’t have taken a private appointment to do this. I know I am so privileged to have afforded that appointment. The rest will be NHS, for which I’m grateful of course. It …
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Shouldn’t take access to private health care, for a key to unlock access to NHS specialist care.
And it makes such a difference to speak to a medic who (not just believes, but) knows how serious your situation is.
We’ll see what happens🤞🏼🤍
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Another of those “the reality you don’t see” posts from me…
My hair finally got brushed today, part by me, part by mum. It had gotten so matted again.
The combination of laying on it 24/7, not being able to have it washed for weeks or months, and not being well enough …
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Well here it is…
“Living with” 'I used to climb mountains, now I need a stair lift because of ME'
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13yrs ago to the day I went to bed, temperature, v&d, dizziness, sore throat, generally very poorly.
I was 14. I never recovered.
This years it marks half of my life sick. I’ve been housebound, bedbound, hospitalised & use a wheelchair. There is no treatment, no cure.
#MECFS
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Following my cousins wedding on Saturday,
I’ve been asleep 22hrs a day for 7days, have had migraines; nausea; dizziness; pain; sensitivity to light and noise; cold sweats; poor temperature control; brain fog; ears ringing; palor of the skin; dark eyes; digestive disturbance…
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Having a bad few days and then feeling a bit sad about where I am in life, everyone around me seems to have major things going on.
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When your ME is bad, do you contact your doctor? It’s so weird having an illness where you can become so ill and everyone says “what does your doctor say?” And you’re like 👀
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I’ve been thinking a lot recently about how traumatic it is having illnesses without bio markers, and/or being disbelieved and brushed aside by medics either before they’ve tried finding what’s wrong, or when they can’t find what’s wrong. Over and over, and over again. It leads…
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Urgh, identity crisis.
How do you even know who you are anymore when you’re in too much pain to wear clothes you like, have no energy to do makeup, can rarely have your hair washed, & are either unable to do the things you once loved, or the aftermath is too extreme.
#MECFS
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Anyone who thinks
#MECFS
or specifically PEM (what follows after overdoing things) is purely tiredness or exhaustion, is wrong.
It’s hell. My whole body feels (& I’m told often looks) like it’s been poisoned.
I’m woken for meals & to pee.
Any form of living comes at huge cost.
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This marks 15years. Fifteen years since I went to bed with a severe fever and virus.
Fifteen years since my 14yr old self’s world changed forever.
The level of suffering I’ve endured is indescribable.
I’m exhausted, and the grief right now is overwhelming. So much loss.
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A few weeks ago I had to miss my friends festival birthday party for the second year running because I was too unwell.
This evening,they came to my garden, wore festival clothes, and we had pizza & chatted❤️it felt so wonderful. Friends who are willing to adapt and include are👌🏼
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It’s my last night age 28, did my nails 💅🏼🧡🕸️ had a shower earlier in the week and had my hair washed, and my bed changed✨
Hope you’re all doing as ok as possible, thank you for being in my life, and supporting one another so well. Keep being kind😚 Lizzy x
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This illness is really fucking hard isn’t it? Really really fucking hard.
#MyalgicEncephalomyelitis
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A thread 🧵
@emmajames3
@DailyMailUK
I am still utterly disgusted by your recent article on the chronic illness community, implying many young women fake how bad their illnesses are to get the diagnosis they want, for attention or gains, even lying to doctors.
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When, during an appointment, your visible symptoms start flaring and the health care professional notices and asks if you’re ok and you’re like👀 yep this is because I’m overdoing it by talking. And they’re like whattttt?!
#MECFS
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Yesterday I was showered, and my hair washed for the first time in nearly 5weeks, as usual. It feels and looks GLORIOUS! I’ve been absolutely wiped out and in lots of pain today, but my scalp doesn’t itch!
This is the reality you won’t see.
#MECFS
#MyalgicEncephalomyelitis
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So, seems like I’ve either got Covid (testing negative though) or some other horrible virus. Fuck.
So far, I’ve had a sore throat, horrendous aches, excruciating tummy pains where I nearly fainted 3 times, diarrhoea, dizziness, HR 166, hot and cold sweats, headaches and …
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Sometimes with
#MECFS
I wonder how long I can continue. How long I can keep fighting. How long I can continue to endure the absolute torture of this illness, the lack of medical or societal care, the lack of treatment. Year after year
It is relentless, & devastating, and silent.
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Does anyone else find it terrifying how little infrastructure there is of assisted living etc for
#pwME
#longcovid
POTS etc.
It scares me thinking of how I will cope if my family can no longer care for me. So many elderly parents are having to care for ill young adult offspring
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Bit of a weird one, but does anyone else struggle to get your head around your age?
I can’t believe I’ll be 29 next week… and I got ill at 14, that’s more of my life sick than healthy, and in some ways I still feel about 15, when life paused.
I struggle to feel my age.
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I’ve had 14 birthdays healthy, and next week, it’ll be 14 birthdays sick. I’m 28.
That’s half my life. This is one of the poorliest I’ve been. When I blow out my candles, my wish will be the same as it’s been for 14yrs. Health.
#MECFS
#pwME
#halfmylife
#real
#birthdays
#grief
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Sometimes having
#severeME
doesn’t mean you can’t go to the beach. It means you have horrendous after effects for ages if you do.
Sometimes I choose to do things & deal with those after effects, just so I can experience a moment of living. I get judged on it from all directions
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When you’re having a visitor and ask them if they’d do a LFT before they come, and they get huffy at you for asking… and then test positive.
That’s WHY I asked. This virus is still very much here,and many of us are still very much vulnerable to it’s long term effects.
#COVID19
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This is what people don’t understand. This chart shows white as rest, red as over exertion, & blue as exertion.
For the past hour and a half I have been laying flat in bed, watching a few videos on my phone. That is not rest, that is exertion. Over exertion was brushing my teeth
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I haven’t had a shower for a month🤦🏻♀️
This is the level of “tired” of people with
#MECFS
I have enough energy to sit in the shower (with help) once every 3-5weeks. This is the side no one will tell you.
#mecfs
#reality
#severeme
#meawarenesshour
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So, like I haven’t already lost confidence, faith, trust, in most medics, I see THIS on a hospital referral by a GP (one I hadn’t seen before)after being pushed into her office IN MY WHEELCHAIR by mum. I stood to sit on the couch. She put mobility: normal
What.The.Fuck.
#MECFS
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I hate the phrase “poor activity management” in relation to deteriorating or relapse, in Myalgic Encephalomyelitis.
I can’t help but feel its patient blaming, rather than illness blaming.
Regardless of what we do, it’s not our fault if we get sicker. That’s cruel.
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Something I think it’s hard to comprehend until you have severe ME is how exhausting it is to wear clothes.
And I don’t mean the getting dressed, I mean just being in them.
The pressure, texture, way you hold yourself or clothes make your posture change and things.
#pwME
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First shower and hair wash in 6weeks and I’m absolutely shattered but it feels glorious!
I’m so ready for sleep, mums even changed my bedding too😍
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Today, a professional said to mum “At the moment, Lizzy’s body is using spoons up simply by carrying out the functions of staying alive. Breathing, digesting, heart beat etc, the vital bodily functions.”
(Referring to the spoon theory.)
Thought that was so helpful.
#MECFS
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I’m always swinging between being grateful for what I have and can do, and content in the little things in life, and then on the flip side being absolutely fucking livid at the effects this illness has on my body and life, and loved ones lives, and…1/2
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@IrishEcocritic
@Hanecdote
Totally agree. The swine flu virus in 2009 took me from very strong, fit and active, to bedbound or needing a wheelchair (still). Myalgic Encephalomyelitis has been the outcome so many of us have faced from Viruses. So frustrating that those high up don’t listen.
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There’s times where it hits me and I’m laying here thinking “fuck, how did I get THIS sick?”
How did I get this sick and how is it possible to be so poorly & not have treatment, & how the fuck to I stop being so poorly because I try really hard, but it’s not a matter of trying
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It’s 3weeks until my 28th birthday.
I’m currently one of the sickest I’ve ever been, (which is saying something) it’s frightening. All the things I want to do, the places I want to go.
My wants get smaller each year as my health declines. I used to climb mountains, now I want
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Ok so, update: it went amazingly. She was so knowledgeable and up to date on all research and management, and also had lots of ideas of things which might help or be worth trying. Antihistamines, different POTS meds, and some different resources to look at.
@actionforme
💙
Seeing/videocall with an M.E doctor tomorrow (privately/partial bursary) through a charity. Nervous, and don’t even know where to start. What to ask. My mind has drawn a bit of a blank.
Wish me luck.
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#MECFS
is like such a fucking cruel illness, cus the more motivated and pro active I am at “recovery” the more ill I get.
Everyone thinks our problem is that we don’t try hard enough, or want it enough, or put the effort in. But in my experience, trying hard makes you sicker.
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Thank you all so much for my birthday messages and all the kindness and love❤️ I adore my Twitter family, so grateful to have each of you in my life.
Made it from my mattress to the sofa for cake✨🥳 Everyone’s made me feel really special x
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I shared George Monbiots article on M.E on Facebook today, and asked if people could read it, it would mean a lot.
My dad liked it. That was the only engagement.
Why is it so fucking hard to engage people outside of our bubble?
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If I was healthy, and I wanted to go to a wedding for 2.5hours, it would cost me 2.5hours of life.
But I have M.E. So if I want to go to a wedding for 2.5hours* it would cost me roughly 300hours of life.
#pwME
#MEawareness
#MECFS
* (with a wheelchair and other mitigations)
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Shoutout to
@BristolCouncil
for assessing me and getting my new wetroom fitted! Had my first shower in it today, it was perfect😍
First time in years I’ve been able to turn a shower on & off myself, and adjust the temperature!!🥳
And mum could wash my hair without getting wet!
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I don’t like saying it, but I’m struggling today.
Sending love to anyone who needs a little extra today.
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So, here we are about to begin
#MEAwarenessweek
2022. Firstly I shall list some of the things I cannot do
- Walk more than 10-20metres
- Make a cup of tea (lift the kettle etc)
- Make my bed
- Have a shower without help
- Wash my own hair
- Go out on my own
- Make my own food
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My friend just sent me screenshots (it’s behind a paywall) of the brilliant article in The Times today, about ME and DecodeME launching. It even states in extreme cases it’s fatal.
Let’s hope this reaches a lot of people.
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This is shocking to read, but ONLY because it’s shocking that someone has actually put it out there, in a newspaper, for all to see.
#MyalgicEncephalomyelitis
#MedTwitter
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I ate Christmas dinner at the table with my family today🥺❤️🎄⭐️
Such a special moment.
Hope you’ve all had as peaceful and enjoyable a day as possible. Xx
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How do you explain to medics the level of exhaustion you feel? Everyone keeps saying “yes lots of people feel fatigue with chronic pain” and I’m like … 👀 ok I don’t know what to say to that.
#MECFS
#pwME
#eds
#ChronicPain
#overdoingit
The words don’t exist for this.
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It doesn’t take into account that many women are dealing with unmanageable periods with their disability, and them being so much harder to manage in terms of keeping clean, changing menstrual products, increased toilet trips, being unable to repeatedly change, etc etc
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First time out in fresh air for 2months, so thankful🥳🌼✨ few minutes of bliss🥹 wearing so many layers🤣🙈
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Sleep doctor in their letter said: only use the bed for sleep and intercourse.
Hahahaha chance would be a fine thing🤣
But also, how does this work when you’re 95% bedridden?🤷🏻♀️🤦🏻♀️
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Many people seem to think the outcomes of
#covid
are either death, or recovery.
You are so wrong.
You could easily get covid tomorrow, and never be healthy again. Be so ill you have to give up work, family time, hobbies, etc, either for years, or forever.
Just making you aware
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@Dsweetscientist
@AuthorConfusion
Imagine… the woman having to do all the work because you’re too lazy or thick 🤷🏻♀️
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Watching
@DrNighatArif
on
@thismorning
made me tearful.
Why? Because it’s so incredibly rare that someone knowledgable informs people what this illness is, to a wide audience.
It made me feel heard, instead of shouting into the abyss.
#MECFS
#MyalgicEncephalomyelitis
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I'm a GP – the way chronic fatigue patients are treated is unforgivable - inews
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…to no treatment. No improved quality of life, a dead end for the patient. It’s hard to explain to most people that you *hope* there is something wrong in tests. Not because you want there to be, but because you KNOW there is, and until something is found, you get no help.
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I was healthy until 2009. I was 14. I have been housebound/ bedbound / wheelchair needing since. I am 27 now.
#MEAwarenessweek
#MyalgicEncephalomyelitis
#pwME
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Did potentially a stupid thing today given how terrible I’ve been feeling at points this week/the last few days, but by god did I need it mentally. To look up through a tree, to blue sky, and feel the sun on my face, was heaven.
It’s been on longggg time.
Sending love x
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Me trying to explain to someone how this illness affects my life.
Mum - Yeah no you’re still down playing it.
We’re so worried about being seen as making a mountain out of a molehill, that we make it look like a molehill when it’s a mountain.
#MyalgicEncephalomyelitis
#pwME
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This illness is so sad.
My wonderful mum today said “I miss you.”
I’m here, but I cannot do even the little things we used to enjoy together. Years and years of our world closing in, when all we want is to live. Today I feel so fucking low and angry it’s unreal.
#MECFS
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My wonderful family worked so hard to make it possible for me to go to my cousins wedding. It was such a beautiful afternoon/evening, and I’m so grateful to have got to experience it. It was beautiful. All the weeks of prep & weeks of horrible recovering to come will be worth it.
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@haziethompson
And even then you speak to a doctor and you’re calm and matter of fact (because you don’t want to make a fuss and don’t have the energy to cry out etc) and say “the pain is 9/10, causing me to pass out, & now I can’t move” and they’re like 🙄 have you tried paracetamol and rest?
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Finding it so hard seeing articles about
#LongCovid
whilst knowing this kind of post viral illness has been around for decades and not acknowledged.I’ve been seriously ill for 12years following a virus age 14. It makes me so angry that there’s still no treatment for
#mecfs
either
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No matter how many times I overdo things (hospital etc) in my 15yrs of illness, I always manage to forget just how horrific the aftermath feels.
Which is why I find it so confusing when the BPS lot think that we have fear avoidance.
If anything I don’t have enough fear of it.
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@10DowningStreet
“Disabled people must work from home to do ‘their duty’, says UK minister
People with mobility and mental health problems should work from home or lose benefits under new policy”
I don’t know what you think I do at home
@RishiSunak
1/4
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All I can say is I’m so exhausted I want to cry.
I would like to brush my hair. Or have a wash. Or let the water run over me sitting in the shower. It’s been weeks since I did these things. Nearly a month since my last shower. The last 4days have been hell.
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It might not be on some peoples radar anymore, but we are STILL IN A PANDEMIC.
On Tuesday I have an operation in hospital. I’m dreading it, not only because of what it is, and the effects it will have on my already chaotic health, but because I am terrified I will get
#COVID19
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I have clothes on, and I made it downstairs for a bit as it’s my dads birthday 🥳 ❤️✨
#MECFS
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Spoke to my GP today, and got upset, (I almost never cry) but I cried, I said I’m exhausted, from all of this, and of all of this.
She was so kind, she said it’s so much for a young person (or anyone!) to be dealing with, it must feel like a full time job trying to stay on top…
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Even if the causes can’t be found, or there aren’t yet treatments, people deserve basic compassion, time, support, and understanding of what they’re experiencing.
It’s hard having a body that fails so spectacularly whilst showing no signs on existing tests. It’s hard.
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My hope for
#LongCovidKids
is that they don’t have such difficulty navigating healthcare, and education as I did when I got
#MECFS
age 14.
No one knew how to help, and
#school
attendance officers put so much pressure on us, I was pushing myself beyond what my body could do…1/3
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Last week the incredible
#pembsbeachwheelchairs
meant that me and my family could go on a beach walk together! It was just phenomenal, the smells, sounds, sights, the laughter, all the beautiful seaweeds and the crashing waves.
To be on the beach, instead of watching
@PembsCoast
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to get downstairs. To sit in a shower. Brush my teeth. To scoop up autumn leaves & throw them in the air.
I can’t believe this is my life, or what I endure daily, & it breaks my heart that I almost don’t notice until I stop & reflect, how bad things are. I’m 28. I want to live.
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My recent hospital tests came back *drumroll please* 🥁🥁🥁
Normal.
😶😑🙄🤔😒
Some would say this is good. But it doesn’t help me at all. I’m still as sick as I was before the tests, only now with no hope of help/treatment. This is
#chronicillness
and
#MECFS
It’s draining
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There’s something equally lovely and heartbreaking about hearing your family laughing, watching a Christmas film together, while you’re up in bed.
🎄
#MECFS
#pwME
#MerryChristmas
#happysad
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Thank you all so much for the messages, love, cards and pressies, it means so much to me hearing from you🥹 I had a lovely day (few days, sorry I’ve been quiet) and have been thoroughly spoilt 🥳✨ x
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My GP rang today to see how I’m doing and if I needed her to visit today or not🥺❤️ Honestly feel like crying at getting the care I usually have to fight tooth and nail for.
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After an absolutely horrendous week which has tested us on so many levels, I managed to go outside for the first time in a month, to the churchyard opposite us, to see some of autumn.
Back in bed feeling terrible but it was glorious.
#autumn
#grateful
#MECFS
#hydration
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There are of course thousands of things I have done, mostly pre illness,or at least mostly during the years when I was mild, &then moderate. I’m so grateful and celebratory of life, of my family, of any bit of joy I can rinse out of each day, I find it. But it doesn’t negate loss
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So last week I got away with my mum (carer) for a few days to the seaside!! It was so exciting, and we had a lot of fun, I felt free in some moments.
Did it take a lot of planning, organising, area access knowledge, medication, management, and will it take time to recover? Yes.
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Met my potential new GP today (yes I turned up in my pjs, first time out of bed in 18days, it was a lot)
She was lovely, very respectful, really listened, knew of ME (and called it ME!!) EDS, and POTS and whilst not being super knowledgeable (which is fine) was willing to learn!
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First hair wash in 7weeks🥳😍 feels so clean and silky and yayyyyy✨ mum cut 5” off too👏🏼
Exhausted but happy✨
#mecfs
#severeme
#pwME
#millionsmissing
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“Patients should no longer feel blamed for being ill, staying ill, or experiencing deteriorating symptoms” and must “experience the same standard of care as other people with long term health conditions”
How messed up is it that this need to be said?
This is shocking to read, but ONLY because it’s shocking that someone has actually put it out there, in a newspaper, for all to see.
#MyalgicEncephalomyelitis
#MedTwitter
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