Safe and sound at the hotel. Had a baggage delay 😵😭 but luckily there was somewhere for me to sit. We got to the hotel where we didn't have to lug our liggage. It was all taken care of 😍 Fresh cold drinks at reception and then we were taken to our room which is amazing by the way. The bed is soooooo comfortable 😤😍 Then straight down for some food which was needed.
Will update more tomorrow but for now I am going to try and get some sleep. Dosed up on painkillers, hoping they kick in a bit soon.
#holiday #crete #edrecovery #update #fibromyalgia #myalgicencephalomyelitis #cfs #ibs #chronicillness #chronicpain #travelling #spoonie
Gallstones are cute
Thank u nurses at the Beech Unit at Worcester Royal Hospital, I got a sick en suite room and I’m being treated very well here x
Climbing into bed after a very long day. Actually feeling very broken at the moment and am rushing around trying to hold the cracks in my life and my health together. Tonight I am Completely exhausted. 😴
Life is not easy when you’re a single spoonie mum. No one will ever fully understand what it takes for me to run my life, business and home around a recognised disability... because it doesn’t present as evidently as others. The only person who has EVER truly understood me is my mum. I’d be lost without her. .
And tonight I’m seriously thankful for my girls. I have sheltered them from the problems in my personal life this week but they can sense there’s problems and are always there for me to hug me when I wobble. I honestly don’t know what I would do without them! 💓🤷🏼♀️
This picture popped up in my memories today & reminded me that today is 5 years since my final operation which was the result of sepsis. This has really made me think & reflect this evening.
That day I was told I may lose my breast but we wouldn’t know the outcome until after the operation. I will never forget the fear I felt about the operation, so much so I refused to be put to sleep for fear of never waking again.
Sepsis is often misdiagnosed (as was mine) and over 46k people die of sepsis every year. That is a huge number.
Since I was diagnosed with sepsis & after many operations I’ve been left with a weaker immune system & been diagnosed with M.E. (Myalgic Encephalomyelitis) but I am one of the lucky ones
I’m grateful for the amazing team that not only looked after me for 3 years but also supported Will & the boys through the whole long process of getting the infection out of my body.
I’m thankful for them taking our views & concerns into account & allowing me to have my surgery awake (apparently I was the first person the surgeon had done the procedure on awake). I’m thankful that I was always allowed Archie by my side whilst he was such a small baby whenever I had to have a procedure or stay in over night at the hospital.
I’m grateful for the specialist care I received after with all the infections I used to get.
I’m grateful for the support the NHS has provided me since my M.E. diagnose.
When I tell people my story, they always say gosh that’s so unlucky but I don’t see it that way, some days are tough, even some weeks, not just for me but for Will & the boys as well, but I see myself as one of the lucky ones.
I could of been part of those statistics & been one of those 46k but I’m not & because of that I’m grateful & incredibly thankful to our amazing NHS.
#grateful #thankful #nhs #sepsis #myalgicencephalomyelitis #invisibleillness #lucky
Infectious Mononucleosis is known to cause lenghty disability in about ten percent of its victims, with most being female. Hormonal changes, perhaps triggered by an infectious event during adolescence, are more likely to push women, and not men, into a low cortisol and immune deficient ME/CFS-like state.
Homeopathy treats the 'never well since mono' successfully, whether recently, or years back, using gentle and natural homeopathic remedies🍃
We would love to have a chat with you anytime if you are wondering what this approach to recovery involves. We do all client appointments online, so your mobility or location is not an issue.
Rachel, Lone and Mary ❤
#mononucleosis #glandularfever #cfs #cfsme #mecfs #fibromyalgia #chronicfatiguesyndrome #myalgicencephalomyelitis #teenhealth #teen #spoonies #spoonielife #holistic #homeopathy #homeopathycfs #homeopathyme #homeopathyfibro #hope #recovery #cfsrecovery #painawareness #chronicillness
👀Why do I hate losing weight?
It isn’t the way it makes me look (although I struggle with the thigh gap), it’s the way it makes me feel. .
I feel weak. .
And bony. .
So fucking bony. .
When I get down to 100lbs, it’s surprisingly painful to sit or lay down- it feels like my bones are sinking sharply into my skin, which makes it almost impossible to get comfortable (fibro flare comfortable). .
Last night around 2am I couldn’t take it anymore. I had shifted from my left to right side more times than my back approved, and the ridges of my hips kept grinding deeper into the skin. I still feel bruised.🤦🏻♀️ .
The blanket I usually tuck under them was in the wash, and I couldn’t find anything else that seemed plush or cushioned enough- but then I remembered the velvet yarn! I hobbled into the living room, snipped off Mom’s current project, and tucked the velvety mass under my side. .
Relief at last! .
10/10✨ definitely doing it again. .
Today’s been another rest day and is helping tremendously- my cold’s almost gone! .
It feels so good to be able to appreciate time like this as productive. I’m so proud of the change in my mindset.👏🏻
If you need extras, take mine🥄 I won’t be needing them today💜
This week in the membership I’m uploading a BRAND NEW yoga programme:
28 day yoga in bed programme 🧘♀️. This 28 day yoga in bed programme is great for those who wish to try yoga and also for those who carry out a practice but have lost track and want to get back into a routine.
Split into weeks each with 3-5 restorative yoga poses you can carry out at your own pace and time.
This goes in the membership beside over 15 yoga videos, yoga Ebooks, yoga programmes to download and articles to help you along your wellbeing journey.
Join the tribe at www.yogamybedandme.com.
#myalgicencephalomyelitis #cfswarrior #chronicfatiguesyndrome
This time tomorrow we shall be in our favourite place. 🌴✈️☀
*long rant alert* Having a bad week or so, and finding it hard to stay emotionally strong this week. Feel stretched too thin with working full time and house/life stuff plus actually trying to live a life that isn't just work or rest. I'm so fatigued that having a bath made me throw up tonight....heart rate is over 100 despite laying in bed....everything hurts....even my fingers typing this....but tomorrow I'll get up and smile for the kids and do it all over again....I just wish there was a way predict what is going to cause a flare and what isn't, trying to find rules in an illness that has none is so frustrating. If I'm wishing for things I also just wish that others could see what is going on....that is wasn't 'invisible' and they could understand that I'm truly doing my best to keep everything together. That this isn't something hat I can just 'push through' or get a lay in t the weekend and solve. Okay rant over, I'm going to ignore the housework (again!) and watch GBBO under a blanket on the sofa with my mum!!
I struggle to describe how it feels as nearly a year on from a physical set back, the fatigue I suffer from is at a complete stand still. But the other night I put my pen to the paper and wrote without thinking, and I think I finally found the words:
Ten steps back
Still no steps forward
She wants to move
But a barricade blocks her to where she wants to go
She cannot figure out why this barricade is there or what she has to do to beat it
She tries everything
And yet nothing works
She kicks, she hits, she screams, she cries
She knows something needs to change
But she cannot move forward
So thats when it occurs to her
To stop and look at the spot where she is now 🍃
It’s not where she wants to be, but maybe it’s not as bad as it first seemed
For she knows the barricade will one day lift
Whether through effort or simply time
She does not know
But she has seen it lift for other people, therefore knows one day it’ll happens to her
And then she’ll finally be free to move forward 🌍
But for now
She has an opportunity
To practise peace and happiness
At the spot where she’s stuck
So she sits
And she waits
As patiently as can be
Knowing one day
She’ll make it
But for now
This spot will have to do
Because even on the bottom step
Peace can be attained
And happiness is still achievable 💭❤️
Kolmannesta hoidosta selvitty. Nyt pitää vielä selvitä jälkioireista. Taas mietin etukäteen, että millä ihmeellä selviän tästä päivästä (ja tulevista). Jouduttiin taas miettimään, että päästäänkö sairaalalle omalla autolla ja pyörätuolilla, vai onko viimein pakko tilata (yksityinen) ambulanssi. Pieniä editysaskelia on hoidosta tullut, mutta kokonaistila on jatkanut huononemista. Vaikea vielä sanoa mitään, toimiiko tämä mun kohdalla vai ei. Ja jos ei, niin mitä sitten? Tässä on nyt aikalailla kiinni kaikki toivo paremmasta ja myöskin koko omaisuus. Viimeinen kuukausi on ollut oireiden rajua vuoristorataa. Olen kokenut sen, miltä tuntuu, kun keho hiipuu, eikä sille vaan voi mitään ja ainoa mitä voi tehdä, on maata tuskaisena paikallaan pimeässä huoneessa, kun jokainen ärsyke on liikaa. Voi vain toivoa, että keho jaksaa vielä. Monesti oon ajatellut, että nyt oon pohjalla, mutta löytänytkin taas vielä syvemmän pohjan. Tällaisia olotiloja en ois ees osannu kuvitella, ennen kuin koin ne. Mutta vielä on toivoa. Haluan ainakin uskoa niin. Tänään lääkäri sanoi, että ei olisi vielä luovuttamassa, vaikka toivoisikin jo parempaa vastetta. Ei siis luovuteta!💪🏼 En pysty edelleenkään vastailemaan viesteihin, tätäkin kirjotan lääkkeillä doupattuna, vaikka pitäisi levätä ja keho rasituksesta kovilla ylikierroksilla. Ja vaikka tänään oli kuukauden raskain päivä, niin se oli myös kuukauden paras päivä. Tunsin tuulen kasvoilla, näin taivaan ja auringon, hengitin ulkoilmaa kolmatta kertaa sitten toukokuun. Vain kymmeniä sekunteja matkalla autolle, mutta silti. Ja ennenkaikkea sain hoitoa. Mitä ikinä sen kanssa sitten käykään, olen kiitollinen siitä, että mun henkeä ja terveyden rippeitä edes yritetään pelastaa.💙
#myalgicencephalomyelitis #pots #IVIG #hospital #ME #canyouseeMENow #severeME #dysautonomia #millionsmissing #stillalive #stillfighting #stillsick #4yearsandcounting
I have an 8:30 class, and it usually takes me a good hour and a half to get up, so I’ve been trying some different protein shakes/meal replacements to cut out the time it takes to make and eat breakfast. This is my current one, and although it’s great to not have to worry about food, I often feel quite sick after drinking it, especially because it tastes very powdery. I have this with a lot of different shakes and liquid supplements, does anyone else? And does anyone have any suggestions for avoiding the nausea?
I am officially, scarily 20 years old today. And today I will celebrate the fact that I’m alive, I’m here, I’m kicking and breathing and surviving and learning that no matter what the future holds, I will come out the other side. I don’t know how to explain this other than it wasn’t easy, and it won’t be easy, but yes, it is worth it. Of course, special thanks to my sidekick for helping to make this possible, my one in a million P-girl, sweet girl, love girl. (Also shoutout to @service.dood.sage
for surprising me with the gift of her presence - best way to kick off the festivities.) I hope everybody is doing well and taking care of themselves!
Image Description: Percie sits next to Claire wearing an orange and black bandana and the blue strap of her mobility harness is visible. I am wearing a blue shirt and black jogger pants and have my arms around Percie. On my waist is a pink and black treat pouch.
I've been successfully killed off by two and a bit lectures.
As in nearly collapsed walking back to my halls sort of killed off.
Third year is definitely gonna be a year where I can only do law. Which sucks but my health is more important right now and unfortunately that means I can't get involved in clubs and societys like I used to. I don't really have friends and I don't really have a way of making them. I have many aquiantances. Its not like I don't speak to people 😂
Really not sure how this year is gonna work. I don't have the physical or cognitive energy. At least not to be the law student I want to be. Yeah Id like to think can get a 3rd or a 2:2 but not a 2:1 or 1st without pushing too much.
Aside from health worries I'm feeling happy and motivated, happy and motivated isnt enough to make me push when I feel like crap tho. I need to guilt trip myself and even then at the mo it's difficult. I need to email my disso supervisor (bleh, she gives me anxiety and it gives me anxiety), actually book a counselling appointment because let's face it I'm a mess. And I bought a wicked ticket that's technically a £50 seat bit I got it for £25! I had to get one show on this deal really. I could have got better seats on different shows but I really want to see wicked again and everything else would be nice to go with someone else which wasn't feasable as mother's not answering her phone and she would want to see the other shows I could have got better seats for.
#mecfs #cfsme #myalgicencephalomyelitis #chronicillness #chronicpain #chronicfatiguesyndrome
Why do people always tell me lies??? Do I have FUCKING DUMB BITCH written across my forehead....
So fed up with this 😥
omg u cured my depression
I owe u my life.
Been off plan for 10 days with my sister's wedding and a girl's night out, alcohol, takeaways, carb filled meals etc... Can feel it now - boy I'm poorly today 😔
Anyway am only human. No regrets, back on plan today. A few days off doesn't mean you have to abandon your progress. Will bounce back soon 👍
Side note, I was thrilled to bits to be able to wear a nice outfit and was proud to have my photo taken at the wedding instead of worrying about all my fat bits!! #weightlossjourney #ketodiet #healthyeating #lowcarbdiet #loveyourbody #wedding #myalgicencephalomyelitis #Fibromyalgia
This community of warriors helps to give me hope. Not of a cure, but that together, we will get through it 🧡
I’ve tagged some special spoonies who been particularly kind and lovely 💛
- FURBABY - Ook al lig ik dagen achter elkaar in bed, ik slaap nooit alleen #liefjes