My other half, sometimes my better half.
My partner in the most beautiful days of my life and the most terrible.
He inspires me, amazes me, pushes me.
He makes me feel strong, beautiful & capable.
We have built the kind of love that truly is unconditional.
I am so grateful to have you by my side Justin, and be by your side for all of the moments,
big and small.
But this one was pretty damn big, and pretty damn special.
💪🏻🏃🏻♂️#firsthalfmarathon #ithacahalfmarathon2018 #rootedrunning
Healing isn’t easy
Healing isn’t quick
Healing isn’t pretty
Healing isn’t a straight journey
Healing isn’t just one thing
Healing doesn’t come with instructions
Healing isn’t just wishing
Healing isn’t a magic pill
Healing isn’t just going to happen
Healing isn’t always going to go the way you want or thought ✨
Healing is discovering yourself
Healing is a lifetime journey
Healing is steps of different wellness
Healing is self love
Healing is compassion
Healing is gratitude
Healing is being open minded
Healing is letting go
Healing is listening to your body
Healing is working through the darkness
Healing is working mind, body and spirit
Healing is finding the joy
Healing is finding YOU
#mecfs #myalgicencephalomyelitis #wellbeing #cfswarrior #chronicfatigue #chronicfatiguesyndrome #spoonieyoga #spoonielife #healing
Today I got a letter saying I need a face-to-face interview for PIP. It was expected. There's nothing quite like having to tell a stranger all of the things you can't do, then having them lie on a form and give you 0 points. If that happens, I have no savings. My carers will be doing it with me. This is the reality. Hoping it'll go in my favour 🤞🏻(also, why do all PIP assessments take place so early? 💤)
Does anyone have any tips on practising mindfulness/meditation? I find it really hit and miss, and get quite frustrated. My mind just will not relax, I'll be okay for a minute or so then it just wanders off in it's own little world. Before I got ill I practiced yoga daily and ran when I was stressed and that was my kind of meditation. But obviously I can't do that anymore. I just get so frustrated with it and end up more wound up than when I started! I've always been the same though, I used to drive my Mum mad with questions (I still do sometimes 🙊), and then my science teachers and classmates despaired of my incessant questions. My brain just likes to work, which probably hasn't helped my situation, I need to learn how to relax it. Any help would be much appreciated 🙏🏻 #theremustbelittlepeopleracingaroundinmybrain #severeme #myalgicencephalomyelitis #mecfs #chronicfatiguesyndrome #chronicillness #fibromyalgia #spoonie
New plant friend to add to my ever expanding indoor jungle. And I got to use the carboard I bought last week for a plain photo background. Following on from mentioning the #SomeNonNone
approach I shared in yesterday's post. Today I read a novel for 5 minutes a couple of times through the day and looked up a cookie recipe I want to make. I can feel a bit disheartened when there are 100's of things I want to bake and that there isn't enough energy to make baking a priority. /
But I decided #SomeNotNone
and will aim to bake once a month. I narrowed it down to biscuits as they last well so I can enjoy them on many days rather than a desert or cake that is best eaten that day. And one category (biscuits) is easier to just to choose the type of biscuit to make next not choose from all my baking ideas. /
First will be peanut cookies made at Chinese new year by my Malaysian friend. Let me know if you want the link to her recipe.
I am sharing this story in detail so you can think about where #SomeNotNone
might brighten your life. I'd love to hear your thoughts.
My baking plan also makes use of #TinyTasks
. Today a task was finding the recipe on my friends blog. Then there are other tasks that can be done days ahead of baking. Roasting the raw peanuts. Measuring out dry ingredients. Getting out the utensils that won't be missed for other cooking etc. I even plan to make the dough and put it in the fridge to bake them the next day.
Breaking it up means when I make the dough it will be quicker and have far fewer steps and need less Spoons. The preparation tasks should sneak into the days before without having too bigger impact on my energy.
Lots of love and energy to you all, I hope today your body and mind are kind to you ❤Claire xoxox
Tag a friend who would enjoy my account and this post 💗.
Come visit me at www.chroniclifehacks.com for ideas to make your days with chronic illness more enjoyable. Link in bio
Today we had to say goodbye to our precious fur baby Buffy. The most loving and gentle doggo you could ever meet. I wasn't going to post about this on here but I know many of you understand how important and helpful our fur babies are while we are struggling with our health. They're always there for you through it all. It's definitely going to be hard but I know he is now in a better place. I love you Buffy and I'll never forget you ❤🐾
I’ve voted & I’m in UK 🇬🇧 so I think voting is open worldwide 🙌🏻Let’s show some support for the amazing Unrest! Read the details from @meactnet
below & I’ll pop a direct link in my bio ⬆️⬆️ #Repost @meactnet
We are thrilled to announce that Unrest is in the running for the 2017-18 Independent Lens Audience Award! It was an honor to have Unrest premiere on PBS | Independent Lens this past January and it would mean the world to us if we could count on your support for this award-- after all, this film was especially made to serve audiences like you.
Voting for the Audience Award opens today Monday, June 18th and ends on Friday, June, 29th, 2018 at 1 PM Pacific Standard Time. Cast your vote now!
http://www.pbs.org/independentlens/blog/2017-18-independent-lens-audience-award-survey/ [Will DM the direct link upon request!] If you found solace in watching Unrest, if you felt seen, if Unrestmoved you or your friends, family, neighbors to greater understanding and empathy, please vote and encourage others to vote as well.
Winning this award would mean renewed interest in Unrest and therefore, further visibility for Myalgic Encephalomyelitis. Let’s keep elevating ME every chance we get until the neglect and stigma are gone for good.
Let’s make some noise for ME!
#timeforunrest #millionsmissing #ME #meaction #may12 #millonesausentes #endmecfs #solidarity #healthequity #endthestigma @pbs @independentlens
• #chronicillnesscommunity #MyalgicE #mecfs #meadvocacy #cfsme #cfs #chronicfatigue #chronicpain #chronicillness #Invisibleillness #autoimmunedisease #myalgicencephalomyelitis #missingbutnolongersilent #spoonie #spooniesupport
Recently my health hasn’t been the best so I’ve been having to rest more and do a lot less than normal. I always want to do more than I can so when I’m forced to rest I find myself feeling guilty and wanting to do something. So I’ve been doing more self care. Self care is so important. No matter if you are healthy, feeling well, or unwell. It’s good for you!! Taking care of yourself is so important for your mental health and that can help your physical health. I’ve been doing a lot more face masks than normal. Painting my nails, it tricks my mind into thinking I’m doing something active and I don’t feel guilty for sitting. When I take a bath I treat myself to more bath bombs or extra bubbles. Putting on a little lipstick or mascara also counts as self care. Brushing your hair out or washing it will leave you feeling better. Self care isn’t just about what you do on the outside, it’s what you do on the inside. It’s eating healthy, but letting yourself have treats. It’s taking vitamins to help your body. Drinking water. Having tea. Its getting enough sleep! Making sure you get fresh air! Opening the curtains in your bedroom and in the living room. If your struggling with your health or not, make sure you are taking care of yourself. Your body and soul deserves care, you can only give it.
And my body says, no. 😴 So my new plodding pacing regime hasn't got off to the best start. I've woken this morning feeling more fatigued than usual and my heart rate is laboured. So I guess plodding two days in a row will have to wait for now. I'm resting up, treating myself to a lovely bubble bath and being kind to my body. It's pointless getting angry and frustrated. My body will do what it needs to do regardless of how angry I get! 😉 Besides, the day is still young. I might perk up later and will be able to manage my plod then. Or maybe I'll start it later in the week? I'll get there when I'm meant to.✨💗 #MEcfs #myalgicencephalomyelitis #Spoonie #SpoonieLife #ChronicIllness #MillionsMissing #Mindfulness #Pacing #RestUp #Bubblebathjoy
takes the most wonderful photographs from her bedside; often appearing abstract, until you take a closer glance 💐 I think they are so beautiful and it takes such imagination 🌈 Carole also uses her images to capture her feelings/the realities of her chronic illness, ME, and in the process raises awareness of the condition. Go Carole!
Once upon a time someone loved me more than I ever expected.....
There's something tragically beautiful in moments of crisis that brings on a new level of love in a relationship. The Doctor said she could see it, my therapist said she could feel it. It's falling in love again; on a level only a crisis can bring. What I've learnt is this: a mans love isn't what we were lead to believe. Period. It wasn't Disney movie grand gestures and totally over the top declarations of love, with a happily ever after....*if you're at your best only* - no; the reality of a mans love - especially when one becomes ill - a man's love for his lady; is far different and much, much deeper. It is washing his ladies body, wiping her arse and still telling her she's the sexiest women around. It's picking her up off the floor - literally - holding her up while she cries and wobbles along the hallway at 3am - watching her fall apart because all she wanted to do was wash her filthy hair - and then, still making love to her and making her feel insanely attractive (filthy hair and all). It's worryingly watching her roll around in pain all night; and silently holding her while she cries in his arms - and still sees her as his beautiful strong women, and not the fragile child that she thinks she has become. It's seeing her in the most unflattering and embarrassing situations and still climbing into bed with her just to hold and kiss her. And a man who loves his women would do anything to see that smile, even if it's just a glimpse. Loving is hard work at times, loving someone sick? Absolutely intense. But if you asked this man; completely worth it.
#declarationoflove #male #king #appreciationpost #love #insicknessandinhealth #chronicfatigue #potsie #EDS #disabilityawarness #disabled #autoimmunewarrior #connectivetissue #ankylosingspondylitis #fighter #fibromyalgia #lupus #myalgicencephalomyelitis #pwme #carer #carersweek2018 #ilovemyfamily #ilovemyman
Did you know that I along with 3 other girls once raised over $2.5 million dollars for charity using just these spicy things
We started the Chilli ME Challenge which took off like the ice bucket challenge to raise money for research into and awareness for Myalgic Encephalomyelitis or ME or as some of you may know it stupidly called Chronic fatigue syndrome
It is something I'll be proud of until the day I die and goes to show with just sheer determination what you can achieve just from your bedroom. So if you are feeling I could never do that just think of these little chillies and give it a go. You will never know if you don't at least try.
What achievement are you most proud of?
My breakfast this morning wasn’t particularly nice... I put too much coffee and salted caramel flavouring in it. I was going to do it again but I didn’t want to waste all that almond milk 😂 Then I remembered that food is fuel and calories are not wasted because they allow you to function. I feel like my whole day is thrown off, but it’s not 😊 it doesn’t change it in any way. It’s okay, food isn’t going anywhere! I can eat something I really fancy for lunch, which I have a feeling you guys will appreciate 😍 I’m off for a neurology appointment and we’re going to BOTTELINOS for lunch! For those who don’t know, it is an Italian restaurant which serve the most AMAZING pizzas the size of flying saucers for like.. a fiver! There used to be one near where I lived but it closed down, but the hospital has one 20 mins away so we’re popping there first 🤓 So grateful that my body is feeling a bit better recently
#myalgicencephalomyelitis #vegansofig #vegans #vegan #cfs #chronicfatiguesyndrome #chronicillness #recovery #fibromyalgia #anorexiarecovery #edrecovery #bulimiarecovery #anawho #fuckana #porridge
Lovin my new red hair and yes, I look okay but in reality my smile masks the huge pain that I am in. My tinted glasses are helping my head that feels like my brain is trying to force its way out of my head because of the inflammation that I get all over my body. And it took me a hour for my body to be able to move this morning. This is because I have both fibromyalgia and M.E. This is my life, I do this everyday and it’s time to stop hiding and start being awareness. #livingwithfibromyalgia #mecfs #missingmillions #myalgicencephalomyelitis #invisableillness #awarenessmatters
One of my biggest supporters turns 30 today! My younger sister Sophie. 💗 Always beautiful, always organised & always has it together! Thank you for holding me up when I feel like I’m going to fall. Thank you for always being there for me & making my journey through recovery that little bit easier. Couldn’t ask for a better sister or friend, You are one in a million & deserve the world! Happiest birthday wishes! Hope your day is as special as you are 😘💗💛
#sisters #sisterlove #myalgicencephalomyelitis #chronicfatiguesyndrome #recovery #support #family #friends
The unknown can be terrifying. I think that's why in many ways, Chronic Illness can be harder than many others. The constant changes, the unpredictability and the mystery if it's progression or regression.
Not knowing what will come on any day or at any moment can be enough to paralyze me or keep me awake all night. Wondering what the next day will bring or whether the next step I take will be the better, or for the worst.
Everything is a guess. And in everything I do, I have to trust in things I cannot see to help me get to a place that I'm not sure even where or what it is.
It's all an exercise in complete faith. And following faith can be downright terrifying sometimes. Because it is human nature to want to be in control, to want to make the choices, to analyse, to collate and form a plan of action.
But in these Chronic Illnesses, patients are forced to put our lives in other peoples hands, to let go of our own demand and need to control and to at some point, trust that something can work and that something can change.
Because I think control is nothing but an illusion. Something our brain makes up to make us feel like things are under control. But to me, the need to control, the need to analyse, and the need to micro-manage our body with our thoughts, can often just lead to more stress, more confusion and more pain.
I sometimes wonder if instead of hunting and analysing and obsessing over what's wrong and trying to go from this and that, and only causing stress and disappointment... If maybe it's not our job to analyse and obsess.
Maybe our job is to let go of the illusion of control, of the obsession with micro-managing our body... Maybe our job is to simply shut up our brain and get it out of the way, to allow the body what it does naturally: HEAL. Without the constant interruption and obsession with the need to control.
I truly believe this. Winding back the brain and it's need to be in control, which it never is, is the key to getting it out of our bodies way and being far better off. I can't heal by trying to control, by getting in the way constantly. I can only heal by letting go my imaginary control, and trusting in my path.
Softest. Blanket. Ever. 🤗🛌
I'm taking some time off to reset, focus on my health and channel my energy into writing. I had always been driven, fuelled by success and onto my next project - never looking back before I became ill. Having an illness has slowed me. But I have this simmering energy within wanting to create, inspire and bring hope. Sometimes I get bogged down by the daily, what seems like chores, just to keep afloat and I lose sight of what I want (asides from recovering.) Challenging, questioning and being curious is healthy and also unnerving. It can be unpleasant but also grounding and comforting - even eye opening. I have an illness, but from this I started to write, not essays, but prose from the heart. I made a promise to someone very close to me that I would pursue my love of good food and words. Words that come clearly from my usual muddied thoughts. It's time. It's time because we are not promised each day and the next. ME/CFS does not protect me from the next disease or crippled cell. To live each day with passion and soul. Gratitude, grace and love. These should be played like an empowering song, lilting and humming all day long. A reminder. A gentle push. To live well. Each day is unique. Beautiful. Bold. Joyful. Painful. And Hopeful. Don't lose sight of what you want. If you healed tomorrow, what would you do? Take steps. Small steps. And keep taking them until you get there. 🙏💙
#writer #writersofinstagram #writingcommunity #words #chronicfatigue #chronicillness #invisibleillness #chronicpain #mecfs #spoonie #myalgicencephalomyelitis #autoimmunedisease #healing #hope #mindfulness #mindbodysoul #breathe #wellness #intentions #goals #selflove #smallsteps #gratitude #naturephotography #blackandwhitephotography #raindrops
New post on the blog about Fairness, Self-Care and finding safe compromises - The idea of regulating my symptoms and trying to manage my disease with the input of others makes me extremely uncomfortable. It isn’t something that we talk about much, particularly in the vernacular of activism. Self-advocacy is key, self-care is the pinnacle. However, in the world sometimes those standards are shifted slightly. In an ideal world, compromise and fairness wouldn’t be a concern. I would be ill and because of that not-so-simple fact, I would be able to make the choices that preserve my health and say screw it to everything else. In my experience, however, I also factor in that I am lucky enough to have the option of finding balance. Because of that, and in order to maintain this aspect of my life that is just as critical as my physical health, compromise is key. But where is the tipping point? - Read more at the link in my bio. (Image by Ryan Kapp, “Outside In,” oil on canvas, 2004.) #chronicillness #spoonie #spoonielife #cfs #myalgicencephalomyelitis #disability #disabilityawareness #invisibleillness #chronicfatiguesyndrome