Day 11 of #festiveselfcare
When your energy is limited plan and choose wisely what you do this holiday season.
Often we are made to feel it’s rude to decline or feel obligated to attend everything people ask us to. The thing is we are not obligated and our health is a priority.
This post is here to remind you it’s okay to pick and choose.
It’s okay to say thank you but I can’t attend.
It’s okay to stay home if you fee that’s what your body needs.
It’s okay to not go to everything you’re invited to.
It’s okay to rest instead of festive socialising
It’s okay if that event is going to cause more stress to not go.
It’s all okay for you to decide what’s best for you.
Think about your needs, create balance and think quality over quantity this festive season 💖🎁
“It’s the possibility of having a dream come true that makes life interesting.” - Paulo Coelho, The Alchemist
Focusing my vision on the delicate paper folds of growing things. And my ears with characters purporting fierce optimism. And my thoughts on belief in magical things.
Christmas magic, pies and wine 😍
After a busy day yesterday trying to make everything right for my Aunty’s Birthday, today I am absolutely done in.
I’ve been asleep all day, but Poppy hasn’t left my side 🐶❤️ This illness makes life very hard & it can be extremely lonely, but Poppy never lets me nap alone 😍💕 #poppydog #ME #myalgicencephalomyelitis #cockerspaniel #bestfriendgoals
Have had a couple of good weeks, but feeling things slipping again. Was napping by 9am, then again this afternoon. Really don't have time for another flare for a couple of weeks... this time of year is far too busy 😫
•A Day in the Life• (part 1)
From the minute I open my eyes, there’s uncertainty. Will I be able to stand? Eat? Work? I look around, testing my light sensitivity, waiting for the migraine to hit. Nothing. I stand, unsteadiness washes over me like a wave threatening to pull me into the under tow. There’s a fatigue so deep it makes every step feel like a mile. Coffee.. I’ve got to stay awake.
After drinking my coffee, I take my morning pills. I count them out. Thyroid for energy. Florinef to stay conscious. Antihistamines, mood-stabilizers, and salt pills (to keep my blood pressure up). I lay back down and wait. •
I feel my muscles ache. They’re screaming at me for using them the day before. I run myself a bath. Although the waters hot, my digits remain uncoloured. Zombie feet, good morning my old friends. •
I look at the shower head. Reminiscing about the days I could stand long enough to feel the water beating down on me. Dreaming about the steam enveloping me like a cloud. I glance back down, I sigh, still zombie feet. •
#lymedisease #lymewarrior #lyme #lymedontkillmyvibe #pots #posturalorthostatictachycardiasyndrome #chronicillness #chronicpain #chronicfatigue #myalgicencephalomyelitis #ptsd #mentalhealth #mentalhealthawareness #gratitude #gratitudeeverydamnday #stemcelltransplant #spoonie #dysautonomia
When you use your spoons to get all dolled up just to answer the door😂😂
I rarely come to bed in the day unless I have to, because it reminds me of how much time I had to spend here in the beginning. But today I feel so stressed and upset it just feels like the right place.
Over two weeks ago, ESA randomly decided that I'd exceeded the £16,000 savings cap - which I haven't. The money they've taken into account is direct payments from the council to fund my care, which are supposed to be exempt from these assessments as it's legally not my money.
Yesterday I called for an update - nothing has been done, apart from receiving my tonne of evidence of bank accounts, letters from my social worker and myself. They said it'd be 24 hours. Nothing has happened.
Today I've had to call three times. Each time I have been given conflicting information and sometimes met with little compassion. Two people told me I'm over £16,000 and that's the decision, queue me trying not to sob, then correcting themselves that a decision hasn't been made since my evidence arrived. I have practically had to beg for them to put my social worker's number on my notes.
Adult Social Care are baffled by this. They say it should never count as savings. Yet here we are, having to prove that. I have cried twice today, this system is messing with my mental health so much and I'm struggling to get through each day. I will be glad when this is (hopefully) resolved and they stop making me feel like a fraud when I'm so careful about declaring everything 😔
Not to be one of those people who posts things with the caption ‘this’, but THIS! 👇🏼[Repost from the marvellous @makedaisychains
] #selfcare #myalgicE #myalgicencephalomyelitis #MEAwareness #invisibledisability #millionsmissing #pwME
The term “self care” just describes a bunch of activities we need to do everyday to survive. It doesn’t dictate what those activities are or HOW you do them. I think the internet got lost when the term “self care” became popular and it it lost its real meaning with “self” being taken literally to mean you have to do t independently. This excludes all the people... mostly DISABLED people for whom these activities become much more magnified. Most people don’t have to think about washing, dressing, wiping your bum, making food... but many people do have to calculate energy or need help. If someone needs to physically wash you, you’re still doing self care. .
[image description: hand drawn illustration of Hannah holding her white cat. Hannah is white with red hair, glasses and is thin. She is saying “why did the internet make everyone think “self care” means you have to do the task yourself? Sometimes we need help.” The background is purple. The border is circular and purple.”] #selfcare #boringselfcare #disability #disabilityawareness
It's safe to say December is already kicking my arse. We're one week in and I've already overdone it which is totally typical Laura. Christmas is my favourite time of year but it's also the hardest, there's just way too much excitement for this little broken body to handle and it's the one time of the year I get a little bit fomo. I used to get major anxiety this time of year about trying to cram everything in, on the same amount of energy I just about survive off the rest of the year. But, I've come to realise, as much as I'd love it I do not get an energy bonus just because it's Christmas! So this week I'm taking it slow, no visitors (except an at home PIP assessment, lucky lucky me) and as much rest as this overactive brain can handle in the hopes that I can reign the PEM back in, in time for Christmas🤞🏻 .
If you see any chronically ill person this Christmas please remember how much it's taking from them to be able to spend time with you, and that when you've left there will almost definitely be a whole new world of pain for them. Be kind and understanding.
#tiredisnottheword #severeme #myalgicencephalomyelitis #mecfs #chronicfatiguesyndrome #bedbound
At the moment
I'm not sure
Where I stand
So I will listen
To my body
And let it guide me
Through this fog
And into the sunlight
Will I know
Where to place my feet
#chronicillness #notetoself #mindfulness
Soooo I was rummaging through my wardrobe last time I was at mum and dad's and stumbled upon this.... I got this hoodie as a christmas present for my ex boyfriend last year. I had a few options, I could tear the thing to shreds, donate it ir say f#ck
it and keep it for myself. I went with the last option because I don't think he even wore it before I borrowed and forgot to take it back. Besides it is comfy as hell and I love #onepunchman
anyway. I am a sucker for oversized hoodies anyway. When I was a child I used to always steal my grandads jumpers and skip around in them gleefully. To be honest one of the reasons I got this for him was so that I could wear it as well. Now the only difference is that he is going no where near it mwahaha.
#hoodie #comfy #exboyfriend #ootd #oversizedsweater #edrecovery #fibromyalgia #myalgicencephalomyelitis #cfs #ibs #chronicillness #chronicpain #spoonie
I wish more people would understand that when I talk about my illnesses, I'm usually *not* whining, complaining or "being negative". Being chronically ill is, unfortunately, a massive part of my everyday life, so along with stuff about my dog, video games, spirituality and various miscellany - yes, unsurprisingly I do talk about being ill a lot! 🙄🤦🏻♀️
Trust me, if I could trade being sick 24/7 for education or a career, for going out on spontaneous adventures, eating out at restaurants and cafés, and socialising without poor mobility, pain and anxiety, then I absolutely would - and no doubt my social media wouldn't bore people so much! As it is, this is my everyday life, so no, I don't have much that's exciting to talk about. It is what it is. 🤷🏻♀️
Basically, this long (and uninteresting!) post is to try and make people think twice before rudely complaining that I bore them with 'medical talk'. The vast majority of the time, I'll just be stating facts, not whining or grumbling, and the same goes for most people in a similar position to mine. 💭💡
However, if I'm having a seriously bad day, I reserve the right to allow myself some self-indulgent venting just like anybody else - it's my prerogative and I make no apologies for upsetting any 'special snowflakes' who feel I have forced negative vibes upon them! 😁❄️🧙🏻♀️
#awareness #justsaying #chronicillness #chronicmentalillness #chronicpain #chronicfatigue #chronicillnesslife #headsup #spoonie #zebrastrong #fibromyalgia #myalgicencephalomyelitis #chronicfatiguesyndrome #ehlersdanlossyndrome #hypermobility #chronicdepression #depression #borderlinepersonalitydisorder #emotionalinstabilitydisorder #anxiety #agoraphobia #socialphobia #osteoarthritis #arthritis #lupus #autoimmunedisease #osteoporosis #dontlikeitdontlook #dontlikeitkeepscrolling
🎄Those of you that know me from my pre Instagram days, will know that I used to make Jewellery and spent hours bead weaving. Unfortunately as my M.E. progressed and Fibromyalgia kicked in. I had to stop. Sitting in one position, concentrating for long periods caused excruciating headaches and my eyes started to deteriorate quicker than was expected. Because I am a glass half full sort of girl, I cannot part with my bead stash as I live in hope that I might pick it up again one day. In the meantime, I am sticking to my crochet and sewing . I make sure I set an alarm every 10 minutes to remind me to get up and stretch. Here are a few of my past makes that come out year after year to remind me of what I can do and to stay positive. This might be the year I may just find the energy to make something to add to my collection 🎄
Do you know what. 26 years and I only now feel happy not wearing any make up, I don’t care if I’m filtered or if a hair is out of place or if I have discolouration on patches of skin 🤷🏻♀️ years of scrolling through social media and flipping through glossy magazines and feeling less than because I didn’t have perfect skin, perfect hair, the best clothes, and feeling less than and inadequate and mad at myself every day of my life. Wondering why I didn’t look as nice as everyone else and obsessing over every imperfection I saw in myself. I’m sick. I’m not gonna get better, I’m likely to stay this way for life or maybe get a little better or a little worse, but mostly will have these symptoms forever. Nothing like multiple chronic illnesses to really put into perspective what matters in life. Only now do I realise I am more than what I look like. #iweigh #bodypositive #chronicillness #chronicfatigue #chronicpain #ehlersdanlossyndrome #pots #posturalorthostatictachycardiasyndrome #hypermobilityspectrumdisorders #chronicfatiguesyndrome #myalgicencephalomyelitis
Day 11 of the gratitude challenge is GIFT. I start to think about these challenges the day before and I had lots of ideas going round my head for this one, but it kept coming back to health. For me, health is the greatest gift. Sadly we all tend to take our healthy working bodies for granted until something goes wrong. I have been really poorly in recent years, but it has taught me greater respect and care for my body for which I am grateful. That's the biggest gift NOT having my health has taught me, is to appreciate when your body and mind are 👌, slow down and smell the roses, respect and treat yourself nicely, don't be in such a hurry and don't forget to have fun along the way. I am grateful that I have a body and mind that allows me to live a decent life day to day. I am grateful for having learnt about the amazing human body and it's immense healing capacity. #gratitudechallenge #grateful #healthiswealth #health #myalgicencephalomyelitis #chronicfatiguesyndrome #healing #humanbody #gratitude30
I've hardly slept. My anxiety is poking it's nasty head up again and my M.E. is raging. But after some restorative yoga and a long meditative walk I feel marginally more human. Taking time for you, checking in with your body and mind, and allowing yourself to just be is so important. I know I'm not ok at the moment, and that's ok. I will be again, it's just going to take time and lots of nourishing self care 💚 #myalgicencephalomyelitis #chronicillness #chronicfatigue #anxiety #mentalhealth #selfcare
So this happened.... Apparently Jess is ready for the doggy Olympics. She had never been a jumper till now. I came home after being out for one hour and she was out adventuring somewhere.
The call for adventure was stronger than the meaty kangaroo bone I left her with.
After much calling and shouting she trotted back home and in the front gate rather out of breath.
Mere minutes later I captured the video of her proudly demonstating her high jump escape technique.
Most of us are coping with one or two big challenges and many of us are privelaged to have a pet companion who helps brighten up our days.
I'd love to hear about your pets and the challenges they help you cope with! Or about some funny habit or how they gemerally make your life better.
Tag a friend who would enjoy this video or someone you know who loves their pets.
Lots of love and energy to you all, I hope your body and mind are kind to you today ❤Claire xoxox
Image description- short video looking out a kitchen window at a wooden gate about 1.3m high. A medium sized orange haired dog jumps very high infront of the gate. The second jump she goes right over the gate.
#pettherapy #therapydog #servicedog #dogsofinstagram
When you go long periods of time without any major breakthroughs, it can feel like your recovery has stalled. Like maybe, this is it, this is your limit. You might feel like your end goal is completely out of reach, and you’re never going to get there. But hold on in those moments, hold on to the knowledge that each day you nurture and nourish your body, and it gains a little bit of strength. Maybe it’s not enough for you to see right now, but it’s there! And one day, it will make all the difference. 📷 @theresgoodinstore
These are a few of my favourite photos that I took a few years ago. I used to love photography so much. My camera would come everywhere with me, and the process of snapping a well composed picture, loading it onto my computer, editing it and thinking ‘what can I do with this now?’ gave me so much joy. I was an art student and I truly loved it. Throughout this, I was sick. I have been since age 4/5, but I was mild until this year. I first went to the doctors at age 15, until then I’d thought chronic pain, brain fog, muscle spasms, memory loss and all the other fun things were just what being ‘tired’ was. I thought I was experiencing the same tired that everyone else experienced, it had been there for so long that I just assumed it was normal. I explained all this to my GP, who referred me to a paediatrician. After an hour long appointment with the paediatrician, he told me that I was over dramatic, I wasn’t bad enough to be ill, and I should just get over it, eat more green vegetables, eggs and apricots (apricots???? wtf??). I got diagnosed when I pushed myself so hard that my symptoms got significantly worse and I had to drop out of college, after a year and a half of pushing myself unbelievably hard to achieve everything I wanted to. I pushed so hard because I was fine, right? That’s what the doctor said. Well, I wasn’t fine. And now, I’ve lost my A levels, my future, my love for photography, my friends, and my life. I haven’t picked up a camera since February, and I miss it with all of my heart.
#myalgicencephalomyelitis #pwme #mecfs #mecfswarrior #spoonie #chronicillness #chronicillnesswarrior #chronicpain
Our mindfulness quote for the day & it involves our favourite thing, candles! 🕯🙌🏻
Always be the light and be kind to one another, it costs you nothing…💛
N & L x
Love love love my choir! Last night's concert was amazing to be part of and I was extra happy to manage to stand up throughout it (without my walker to hold on to) and dance with the rest, do my rap solo and ENJOY life completely for over an hour.
How? B12-injection the day before, pacing myself consciously for several days ahead, starting pain killer regimen the day before and sticking to it, wearing support socks for circulation, eating properly, effective rehydration plus loading up on magnesium aaaaand drinking lots of coffee.
How this will effect me in the long run remains to be seen. So far it has meant heart racing out of my chest, panting, weak and wobbly legs just after. Then came rush of "fake energy" as I call it... Legs worked again and so far I've gotten no sleep all night because my adrenaline is still pumping - 12 hours later. I know this is terrible for me (physically), but it was worth it and the B12 helps a lot, so fingers crossed I won't spend Christmas in bed. Either way, I am happy!
#popochrockkören #popochrockkörenfalun #konsert #kör #falun #choir #love #mecfs #myalgicencephalomyelitis #chronicpain #chronicfatigue #invisibleillness #mecfssverige #mecfswarrior #mecfsstrong #pacing #b12injections #adrenaline #spoonielife #spoonie #spooniesisters #allmyspoons