- Walk with a dog, more people talk to you than if you walk alone
- Use the ‘golden hour’ to take a photo and marvel at your skills
- Wake up just to see the sun rise and do step two. You’re allowed to go back to
- Laugh really really hard till it hurts. Friends and YouTube videos help
- Make someone cake for no reason and share their joy
- Show a child ‘wonder’ and watch their joy, it’s infectious
- For slow burning joy plant some seeds and feel joyful each time you see them grow a little bigger, and think ‘I made that happen’
- Light a fire, indoors or out, and spend time roasting parts of your body till they go red. Decide it’s probably bad for you so sit and stare and getting lost in the flames
- Eat cheese and don’t feel bad
- Climb as high as you can to get a really good view
Some days are for warmth…
So today I woke up feeling pretty horrid. New meds are making me sleep for nearly 10 hours a night, and then groggy the next day. I guess this beats the 4 hours average I’ve had for the past few months.
I’ve begun a new kinder morning routine. It mainly is about not rushing:
Wake Up | Check my journal (not phone) | Feed and let the dogs out | Enjoy coffee / breakfast | Put myself first with yoga or mindfulness | Get ready | Walk the dogs | Check the post | Plan meals and actions for the day
In today’s journal I had scheduled a Weight Watchers meeting, crafts with a friend, followed by a show at the theatre. After sleeping past the Weight Watchers meeting time, and walking the dogs, falling over in the mud, and nearly passing out I knew I wasn’t up to much. In the panic of pain and fatigue I cancelled everything.
Then I realised I did really want to see people and that I needed company and inspiration. I don’t know about you but I am constantly in battle with myself for shared time and alone time? So today I back tracked and rewrote the day. I’m sticking to 3 things at the moment so my new plan was:
- Drive to the Cowshed to pick up craft materials
- Meet with Helen, to eat her home made soup and chat and maybe craft
- Make chickpea blondies
So I did all these things instead of a disaster it was wonderful. Driving through the autumn landscape in no hurry meant seeing the countryside in all it’s glory. Then getting home it’s all warm and cosy and the dogs were waiting.
Helen arrived with a box full of crafts, and her delicious homemade squash soup (I’ll endeavour to get the recipe). We chatted about life, and ideas, and drank coffee. We both, being spoonies, decide to keep the craft simple and make our own ‘advent calendars’. It was Helen’s idea as a way to be kind to ourselves. I provided the labels to write them on and we both came up with ideas for an action a day that would be treating or nourishing ourselves.
Thats all there is to it really. We wrote on luggage labels and decorated them with stickers. I ended up doing 31 to take me all the way to New Year, and have a whole month of adventures. The idea is to pick one each day to do. If it is completely impossible with your schedule we decided we would be allowed to swap one but you should then make time to fit in the discarded one so all the tasks are at least attempted throughout the month. I’ve decided to do mine with the food bank advent idea. In this I put an item of food into a box each day to donate to the local food bank.
Finally I made ‘chickpea blondies’ as a quick sweet treat, they sound odd but they are amazing. I found the recipe here. They are great for lazy days and you literally shove everything in the blender and bake. Oh and then eat of course, still warm from the pan with oozing bitter chocolate.
What do you do to stay warm once the weather turns colder and the nights are shorter?
On the road…
…to I don’t know where. Wandering with out purpose is thrilling, terrifying and alien. I tend to be someone who need goals and aspirations.
So as a friend said today, you’re just at the point of hitting the reset button. It’s time to start again. So I’m ‘getting my ducks in a row’ and beginning a new journey.
I love words and collect them on my Pinterest board. Today I took a little peek back at a few to inspire this little journey of mine:
So the last few weeks have been living in crisis. Caused by pain, mental health, relationships, work and income. All at once, in one big lump. Pow, taken out by the world!
3 emergency hospital trips, 1 breakdown, 1 job lost, 1 relationship ended… It’s so easy to get swallowed into the negative and not see the positive. But the positive moments have been about the friends I have and love dearly.
What it has done is made for a very interesting discussions about life. It’s been useful to surround myself wth my friends and those who have been in the same place.
Today’s post is dedicated to Helen who has been amazing. Having been through the same shit she’s been one of the most resilient people I know. Oh and she’s a reflexologist too. I cannot recommend her enough for any kind of healing!
Her Facebook is here, and website is here
A few of her wise words include:
“So the world currently feels like a very scary, lonely & overwhelming place yeah. It’s all shit, there’s no-one you can rely on and you’ve just not got any more energy to keep fighting it all 😭
I’m not in your head but I can recognise it: I mean, when even your own fucking body seems to hate you what’s the point eh FFS!
But there is a point. It’s horrific right now & you prob can’t see any light. Let me reassure you, there is a light. It’s called resilience, a strength you didn’t know you had, friends & vague contacts that will step up & help you find a path where you didn’t know there was one. It’s chaos, but out of the storm there’s new horizons, ones you’d never dreamt of before.
I’m not saying it’s easy, that’d be a lie. Trust me Vicki, it’s an ending but also a new beginning. It hurts like fuck. That hurt eventually turns into the determination your new self will rely on. Among my closest friends we no longer call it a ‘breakdown’ but a ‘breakthrough’ because in order to be true to ourselves the pain has to be faced & the old patterns need to be broken.
People don’t understand what it’s like living in pain every damn day. For doing that in itself , AND continuing to work as long as you have, you have a strength that most do not. Be proud you’ve made it this far. And with or without a bloke, your journey is only just beginning.”
These words were my solace in my darkest moment. They became a mantra to cling to. I love the idea that when in crisis experiencing a breakthrough rather than a breakdown. Maybe my list should look like this:
emergency hospital trips signs that I need to ask for help with my conditions, 1 breakdown breakthrough, 1 job lost assessment of my career, 1 relationship ended 6 close friendships formed and countless true friendships beginning
Today in our feet pampering session we discussed parenting. She suggested writing down all the things we want from our parents (theoretical ones if you are reading this mum and dad). Then you cross out parents and make it a list for how you want to treat your self. So here is goes…
I want my parents to be I want myself to be:
- Non judgemental
- Not to know best for me but accept I know this
- To listen without an answer
- At the end of the phone
- Not pull me into their dramas!
- Not to take on my illness as something they’ve done or passed on
- Trust me
Well that was a lot of writing and self led therapy for one day, I’m off to bake a cake!
Limbo | Some words about this adventurer
There’s a creeping sickness inside my chest.
There’s a living ball of weeds that have a grip,
slowly they snake their way through my ribs,
worming their way into my fractured heart.
It’s in my head but it’s real nauseating pain
that races down my arms till they’ve been hijacked.
Slowly they consume me before spitting the remains out
like the fragments of vomit after being sick for hours.
My heart thuds a sickening acid beat,
conjuring a heat that rises and I give in.
Then I forget for a moment and live,
but living becomes a limbo, a holding place.
I’m split in two, too scared to be alone,
too overwhelmed to sit with you and open my mouth.
A warrior and a victim, resilient and weak,
I’m frightened beyond belief.
I’m ‘all about me’ it seems, and irritated by the world.
Everything feels like walking through an endless desert at night,
I can’t see beyond my hands which are so cold and alone
I’m thirsty and need shelter but cannot find the right place.
Your company is welcome but never the one.
No one is the one thing I want.
I want to close my eyes to the night’s sky
I want to join the stars and become part of the nothing
I want to stop fighting and trying
I just want rest.
It’s there within reach, within a plastic packet,
It’s just a swallow away from peace.
It’s a wild and dangerous place
full of beasts that make me alive.
It’s like a thief came and took my OK, my safety, and my future.
I feel numb and uninteresting to the people around me,
kind people I don’t have the words for.
I feel like I lack a purpose,
I’ve been cut adrift from everything I thought I was,
I’m a tiny, leaky row boat on an inky ocean.
People believed this vessel was a ship,
It never was, it was just a leaky tub that was clinging on.
There is a beauty out there in the endless starry sky,
but at the moment it’s just out of reach.
I’ll find my map and telescope soon but please hold in there with me,
I’m just on a break from the adventure.
I’m doing all the emotions at groundbreaking speed,
and someone forgot to install the emergency stop.
I won’t make you promises as I have none to give
but I may surprise you all.
…and a list of ‘I can’ts’.
A lot of living with Chronic illness is about learning to say no. This is all well and good, but I can’t help thinking there must be a way to say ‘I can’. To live within boundaries and spoons but still be able to do stuff.
Today I felt the pressure of New Years and the forced fun. I imagined getting dressed and going out, drinking cocktails and staying up till the early hours. Because that’s what you’re supposed to do right? And everyone else is doing it. Or are they? When I woke up this morning I was shaking, my whole being ached and everything was swollen and I knew the plans just wouldn’t happen. So we changed them, the girls are bringing over takeout and then slipping off to celebrate leaving me with a duvet and my pjs. Instead of thinking I’ve missed out I can see that I’m just doing it differently thanks to great friends. It’s OK to think you’ve missed out but check and see if you really have. After speaking to people I realised that so may others are doing the same! Do what makes you happy not what you think you should do.
Earlier on today I went for a walk, went too far, got stuck in a muddy field. and Paul had to pull me out. Again I had gone too far, got frustrated and shed a little tear over what I can’t do. On reflection the good thing was that I was able to walk as far as I did and chat to Paul along the way, laugh at being stuck in the mud and the puppy trying to chase birds. Being outdoors is always so healing whether it is just for a short time. So what if I can’t walk as far or as fast, I can walk and enjoy the outdoors that is what matters. The winter skies, crows cawing and being outdoors makes me happy.
I saw a post earlier that said make a list of what you do every day, then make a list of what you love doing and compare them. I already know that having chronic illness has slowed me down and made me savour the small stuff. When you only have a few spoons spend them on those you love and that list of loved things.
So my New Years Resolutions are not to take things away but to add more in!
- Dates with the boy for my heart
- 10 stretches everyday for my body
- A meal plan each week for our budget
- Oh and my dream of riding my bike again
Happy New Year all, remember do what makes you happy.
It’s funny when things crop up…
… just as you needed them.
I’m having a terrible time mentally, physically and emotionally at the moment. I just don’t seem to be able to hold things together.
It’s having a real impact on every area of my life including work, income and relationships.
Never has the autoimmune community of various groups meant so much. Just hearing and chatting with others in the same place is so important.
For those who are looking for support or like minded people here are some links:
- Lupus UK Sufferers A closed facebook group for advice and venting in a safe space.
- UK Lupus Like above!
- Instagram users: @kickrockslupus teamlupus lorettahopecouk chronicallyworkingonit chronicallyliving chronicallykatie_ chronicpainprincess llovely_lupus_life
- And finally the reason for writing today’s post was this blog post written by Kathy Muffenbier came up just at the right time. I LOVE the You Feel Like Shit: An Interactive Self Care Guide!
Spoons and hugs x
Bed Days Sofa Days
Bed and sofa days are a serious feature of Spoonie life. So I thought I’d put some things together to help survive them. I was inspired by a Buzzfeed list of all things! I do love a good list and this one was titled: 19 Insanely Cozy Accessories That Will Make You Never Want To Leave Your Bed
So it got me thinking, as a bed expert, what are the top things you recommend for a bed day? So I asked some of my fellow spoonies, here’s what they said:
Zoe: “Clean PJs, dreadful rom com films (friends call it the heart break hotel collection), colouring in book. Dark days, planning small adventures for the good days! Baking, I find this really therapeutic (not a great combo with steroids!). Crafting, small projects that can be finished easily. Going to a tea shop with good friends and family. Just a small outing to make me feel like I have achieved something with my day, for me that’s important! “
Zoe works in the Arts and is a Myositis fighter. To find out more visit www.myositis.org.uk
Follow Zoe on Instagram
Katie: “An extra duvet as a pillow always makes bed days more enjoyable for me. And keeping an array of boxes of cereal by the bed! Cereal helps everything”
Katie is currently studying for her MA in screen writing, works on and off with us a Wide Eyed Theatre, is a talented poet, and makes costumes. All this and she lives with Lupus plus overlaps.
Helen: “Fave teddy bears. Little book of inspiration / fave quotes. My mini-craft box with ‘easy’ / children’s activities in. Clean snugly blanket. Radio 4 iPlayer tuned to satire”
Helen is a trained Reflexologist and knows all about the art of relaxation and understands chronic pain. This is her page.
Nick: “A onesie, Netflix and a Tardis stress ball usually does the trick. I always try and write as well…. I’ve got a book of writing stimuli and I try and use that to take my mind elsewhere, to varying success. And my cats are very good for those sorts of days – boundless energy that you can’t help but be drawn into!”
Nick is an actor, performer, writer and facilitator. His webpage is here.
Pete: “Giant bean bags are really good for sitting yourself up. Midget gems. Aimlessly browsing Instagram. Usually when I’m having a bad day I can’t really breathe much so good music or good films rather than just staring into middle distance is always good… Apparently a strong coffee is good for my lungs which is as much excuse as I need there (just don’t tell my cardiologist!). Oh yeah, forgot to mention cats are excellent company in the small hours
Pete is an ace photographer and his work can be viewed here. Or follow Pete on Instagram.
Cassy: Endless cat memes. Clean duvet/blanket. Whatever food you fancy. Back to back episodes of American crime dramas. The Buddify meditation app. Browsing on Etsy. Bubble baths. Podcasts. Fluffy socks.
Cassy is a creative blogger and her blog provides an excellent distraction on bed days. You can read her blog here. Or follow Cassy on Instagram. She’s a busy bee and a super fighter of chronic illness.
And last but not least my spoonie sister Sarie: drawing strange things (when I can), youtube video binging (tutorials and vlogs), A duvet and extra comfy pillows, Clean bed sheets and pyjamas, Cake and tea, Comfort food like beans on toast, Hot water bottles, fresh air if i can get it, Pain killers, doggy hugs, blog writing, friend chatting, listening to woman’s hour or good podcasts, sketchbooking, list writing, cooking good food, heat packs, being surrounded with good objects, not feeling guilty (trying to remind myself of things- again list making is good for this), enjoying small tiny bits and remembering not to compare my self and my achievements/non achievements to others. Remembering that good enough is another persons great. Reading good things (love rainbow rowell & sarra manning books). More pet hugs!
Sarie lives in Barcelona where she is an illustrator and designer. Her webpage is here
So the top 5 bed day essentials seem to be…
- Clean, fresh comfy duvets with lots of snuggling potential
- Snacks that are good for you and easily on hand
- Distracting your brain whether it be through movies, books or activities or keeping creative with crafts, baking and writing, whatever you can manage.
- Treating yourself. If that means a nice cup of tea and some chocolate or a super bubbly bath. Guilt free as you need it
- Pets and fellow Spoonies: for hugs, moans, advice and to listen
Thanks to all my lovely, talented and courageous friends.
Please leave a comment if you have further suggestions.