Spoonie Solutions

Hands up who has #spoonie problems? Me too, I probably whine about them a lot. You’ll know this if you follow my ig stories! So what’s this #spooniesolutions all about? Well it’s turning the hashtag #spoonieproblems on it’s head. Before you cry in protest its not because the problems are not valid, quite the opposite in fact. They matter so much, and need to be highlighted. #spooniesolutions is all about identifying the problems and shouting about them. Then I want to attempt to discover some answers.

This all came about after a combination of discussions, and a personal review of my blog and Instagram. I had a big appointment recently in which I found that, as expected, I have an area of hyperperfusion in my brain. In the appointment I took it in my stride, but as the results sank in I felt very upset. Part of me wanted to jump for joy that I have a positive (as in something showing up not a feel good) result, and part of me was scared and in shock. It explains a lot including migraine, and serious mental health issues, confusion and fatigue. But it broke my heart to think that it is active in the blood vessels in my brain. For my own sanity I had to recognise my upset (spoonie problem) but find a way to deal with it (spoonie solution). For the first week I cried and it still makes me cry now. But I am getting there.

I’m in a position now in which I can reflect on how I’ve survived through the past few years. Yes that’s dramatic but it has been survival. I can hand on heart say that it’s been through living life slowly and taking time to nurture myself by being creative and living a more simple life. I want the solutions to #spoonieproblems to reflect this but also offer a range of approaches that I hope will be useful to me and anyone else that is out there and reading. They’ll include practical advice, campaigning for change, and most importantly opening up the issue for discussion.

As a veteran spoonie I feel qualified to address the issues from an insider’s perspective. But to ensure that the solutions given are thorough and actually useful I will be consulting with other spoonies via the comments here, Instagram and in real life. I will also include resources from medical practitioners, other websites (such as The Mighty), apps (such as HealthUnlocked) and relevant organisations.

I have a few solution guides planned including travel and holidays (vacations), everyday travel, work and benefits, and hobbies. All of these will include parts of my personal story and anecdotes. But I will approach how to deal with them by being creative and living slow.

Please don’t be shy, I’d love to help your share your story and looked at spoonie problems together. Let me know in the comments, via social media or email.

Look forward to hearing from you…

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Creating a bedtime routine

When the clock struck midnight on 2017 I decided to not make a New Years resolution. In fact at the time I was probably drinking a glass of bubbly and wishing I was in bed already 😂. I decided that this year I would focus on my physical health, which as you may know, is problematic. Instead of overwhelming myself I decided that each month I would set one focus to work on. For the first two months l’ve done Veganuary, and tracked my water intake.

For March the focus was sleep and here’s what I learned by tracking and focusing on it.

Medication

In 2016 I wasn’t sleeping for more than 3 to 4 hours a night due to pain and mental health. Being that sleep deprived does bad things to your wellbeing and even worse things to a body coping with autoimmune. When I went into crisis I was prescribed quetiapine which was great as it knocked me out and calmed the mind. The pay off was sleeping ten hours, not being able to wake up, and being in a constant fog. I’ve had huge meds changes over the past 3 months and dropped down in dosage on tablets that help sleep. This means I’m sleeping less but naturally so this focus has really helped me focus on natural sleep.

Undisturbed sleep

So one of my worst habits is waking up at 3am and staying awake till 7.30 am. When you then want to be up by 9 this is no good. I often need to wee in the night and have a terrible dry and painful mouth. This combined with pain in my knees and ankles due to Behcets, or bursitis on my hips that creates painsomnia, means I just couldn’t get 8 hours sleep. The meds above helped but without them I am the most restless sleeper.

Waking up

So I always aim for the average 8 hours to get up around at about 8am daily. I’d usually use the iPhone bedtime alarm on the clock app but often I wouldn’t fall asleep in time, or I’d not feel refreshed from sleep when I did. I have restless legs syndrome so would find I couldn’t get off to sleep in time. I also used my Fitbit this month to track my sleep and found that my sleep was so restless. Not really a surprise, as I mentioned above, my sleep is so disturbed. But I also realised I wasn’t helping myself as when I woke up I would be tempted to watch something on the iPad to help me get back to sleep but it was doing the reverse.

So after all this trying to focus on the problems I’ve decided to try a different approach. I wanted to make a change to the way I get ready for bed so that I set myself up for a good nights sleep and feel more in control of the individual elements. So I created a bedtime routine and thought I’d share it with you.

Making your own personalised routine

So the first thing I did was to pick a bedtime. I chose 11pm so I could aim to wake up at 7.30am ish. Then I worked back in half an hour blocks to create a plan.

10.30 pm

As this is the bit right before bed so you want to be winding down. Take these moments for a last minute tidy, but nothing rushed or intense. Turn your bedroom back into a tidy sanctuary. I put my clothes in the laundry bin and make sure everything is hung back in into place. My clothes are sorted Marie Kondo style so it’s great to keep it this way. I also tidy away any beauty products and clutter from the day. It’s here I take my bedtime meds and then hop/ into bed with a podcast playing. Oh and I found the best thing for right before you settle down, a pillow spray by Feather and Down that helps you get off to sleep. It makes me breathe deeply to inhale the incredible scent which helps with relaxing. Set up your beside table to make this easier.

10pm

I chose this time to try to empty my head. I try to keep it simple and uncomplicated. In true bullet journal style spill your mind out onto a piece of paper > check your journal > make a to do list for the next day > fill in any habit trackers and memories/ gratitude journals. Finally I pack my bag with any books or letters and post needed for the next day. Set up a place to keep your things for the morning including a charging station for your phone and battery packs etc.

9.30pm

Stretch and move. I find a last bit of activity before bed helps to firstly make you feel like your body is tired and secondly helps hugely with restless legs later on. I love yoga with Adriene.

9pmScreen free time! Try as much as possible to cut out your screen during your routine. This is the hardest thing for me to do but it is well known that the blue light affects both our health and sleep patterns so I’m trying really hard. To force me off I use the app Moment. This sets bot a daily limit and screen free time. Try to do something enjoyable in place of your phone so you don’t get tempted. Like reading a chapter of that book you’ve not got round to, or grab that colouring book you were given in 2015 and never completed.

8.30pm

Begin the wind down with a little self care. Take your bath now, I like mine scalding hot so I can feel my heartbeat and my skin turns red. Apparently by raising your temperature in the bath it then lowers your body temperature when you get out and makes you sleepy. If you don’t fancy a bath or don’t have time make sure you take your makeup off earlier in the evening so you’re not too tired and give up when you crash into bed later. I’m also trying to get into the habit of getting my clothes out for the morning, the night before so I don’t have to bother in the morning. I use the Cladwell app to help pick outfits.

So that’s my routine. It’s ambitious I know but I’m dipping into it to begin with. I always go for the slowly, slowly habit learning approach. So maybe pick one of the things to do for a week. Feel free to make it your own and find what works for you. I’d love to hear about your bedtime routines in the comments.

Anxiety girl

Hello anxiety that is making angry, scared and unsociable. Where are you coming from? I know I’ve accidentally missed some important meds and some sleep. I’ve worked quite hard volunteering, and it’s been Christmas, the most anxiety ridden time of the year. But clearly I’m a bad person who can’t manage myself.

I’ve got constant butterflies and I’m trying to do all the things to tell the negative thoughts to go away. But the voice gets stronger and I hear people talking about me and criticising as though they are in the room. I ignore it and carry on but it just gets louder.

Yesterday I didn’t have any sleep because I missed my meds the night before. The meds are the only way I sleep and without them it’s a nightmare of pain and bad thoughts and being fidgety. This combined with a migraine knocked me for six. I tried to take control of it but when the migraine kicked in I crumbled. I ploughed on and went to the cinema with my friends. I fed the migraine with darkness, drugs and caffeine. Eventually the pain subsided and only the tension remained. I felt exhausted and emotional and anything slightly negative made me catastrophise. I couldn’t talk to anyone and was convinced I just pissed everyone off. The wall went up and I teetered with a meltdown.

So I pulled my socks up and went to the pharmacy to get some emergency meds. I did my research and the Nhs website said to try your doctor (they were shut), then your pharmacy, then a walk in centre. I walked to the pharmacy in pain from swollen joints to be met with a pharmacist shaking her head. Instantly she dismissed me and told me she couldn’t help. I pleaded with her that I’d read the Nhs website and this is what it told me to do. She suddenly changed her story and said she could do it if I rang 111 for an emergency script. ‘Are you sure?’ I replied, the Nhs advice didn’t say this at all. But facing another day of suicidal thoughts and crippling anxiety was too much so I complied. ‘If they don’t get you one I’ll do it’ she said ‘but you have to try first’.

Half an hour later I was still sat in Boots. My migraine was returning and I was sat on hold to 111. The bright strip lighting flickered and pounded. I started to feel ridiculously hot and sweat soaked my clothes. My pain meds we’re wearing off. My knees, fingers, ankles, hips and back were screaming. I know I was beginning to fall over fast.

So we begged the pharmacy for somewhere quiet to sit. A super nice pharmacy assistant found us a small room and we sat with the lights off and a fan on. They asked if I wanted to go to hospital. No way Jose was I going just for meds, and a migraine, joint pain and anxiety. I agreed I would if I started vomiting , shaking or fitting.’ I explained that the best thing would be the just get home to bed. The pharmacist then changed her tact and said she’d only accept the 111 prescription and I’d need to go elsewhere if I didn’t get it in time. The inconsistency was a nightmare for my anxiety and I’d been there before to get them so was on their system. I had a bundle of paperwork to prove I was on them but it was a case of ‘computer says no.’ It was as though she was making it as difficult as possible and I was just annoying them.

The assistant, however, was wonderful and we chatted about mental health and chronic illnesses. I began to calm down and eventually spoke to 111 who said they’d get a doctor on it. We then went round in circles for the next 2.5 hours. 111 kept asking if I wanted to go to hospital as my symptoms were alarming. I didn’t want to go, the best place for me was home if only someone would give me the meds I’d manage what I’d manage everyday. I felt like a dick that caused a drama as eventually they tried to get rid of me from the pharmacy and ask me to start the whole thing again with another pharmacy. I felt like a burden and just wanted my bed.

After 3 hours, countless phone calls and giving my details over and over the prescription still hadn’t arrived. The doctor I spoke to was convinced I lived in Norwich. Erm no I said I live in Canterbury and had done for 17 years. I think I went to Norwich once about 12 years ago, it was dark and wet and I didn’t even see the town. So he continued to ask if I was visiting Canterbury. No I explained again, I live here, just like I’d told the two advisers I spoke to. He writes the prescription. Turn forward an hour and the script hasn’t arrived and so I ring them back. Im now in a flap that the store shuts in 15 minutes and I’ve sat here for no reason doing everything everyone is telling me to. I’m trying really hard to sit and be patient despite it making my pain worse. Speaking to the East Kent (not Norfolk) team again I will us to be near the end of the whole sham. Then I was told my surgery was Aldington . Nope I said I’ve given you my details 3 times it’s Chartham, perhaps Aldington is in Norfolk, I suggested!?

Anyway 10 minutes before closing the fax arrived and I was given 6 tablets in a bag by a rude and unsympathetic pharmacist. Lack of pain control and anxiety through the roof I’m a mess, I’ve convinced myself she hates me, all the staff have been talking about me and I never should have said I went to the cinema to hide from the light. I’m not sure who was judging me more, them or myself?

By this point every look, word and action becomes overwhelming. I’d tried to plan a nice New Years Eve with a cocktail menu and funny description bit that means everyone who was coming was included. My friend had rejected it by saying she’d only drink her own cocktail on the list. I knew her reasons were ok, she wanted to stick with one drink to not get too hungover etc. But in this mindset it’s rejection. The menu, lovingly made by me for everyone, went straight in the bin as soon as I got in. I felt as though I’d tried to make a nice gesture then been told I was controlling or had bad taste/ ideas. I was ready to give up and go to sleep and sulk.

Somehow in that moment I managed to pull myself out of it. I put on my dress and lipstick and found some inner strength to have a good night. I rebuffed the negativity and overwhelming thoughts and for the most of it laughed and had a genuinely good time. It didn’t mean I wasn’t squashing the ‘they all hate you’ voice constantly, but as dramatic as it sounds I survived another New Years! I’m proud of myself despite being exhausted because I won a battle.

This morning I’ve woken up with the butterflies. It’s the alcohol I drank acting as a depressant, I tell myself. It’s because you’re ill and tired. I start to work a little on a project I volunteered on. I poured everything I had into it but I feel like a failure. Every time I try to make something happen on it there’s obstacles, politics and I do the wrong thing. Now I’m utterly terrified of the meeting tomorrow and that I’ll be belittled. I can hear the conversations that are going on behind my back and I feel sick with butterflies. But it’s just another day that I’ll get through somehow.

I am anxiety girl and I think I’ve realised at the moment I’m not at my most well. So bear with me, I’m fighting it and it will be ok but I may be a little fragile.

As an after thought. Just like the meme says above I have 99 problems and 86 are in my head. If I’m working with you at the moment, or have been around you it’s more likely my sensitivity and brain than anything that’s real. Chronic worrier here gets all sorts muddled. I’m also excellent at hiding it all, even from myself.

How to find joy

  1. Walk with a dog, more people talk to you than if you walk alone
  2. Use the ‘golden hour’ to take a photo and marvel at your skills 
  3. Wake up just to see the sun rise and do step two. You’re allowed to go back to 
  4. Laugh really really hard till it hurts. Friends and YouTube videos help
  5. Make someone cake for no reason and share their joy 
  6. Show a child ‘wonder’ and watch their joy, it’s infectious 
  7. 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’ 
  8. 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 
  9. Eat cheese and don’t feel bad
  10. Climb as high as you can to get a really good view

How to do a bootfair

I think bootfairs are uniquely British. They’re similar to flea markets but different. Everyone rocks up in their vehicles, puts out a rickety decorating table then flogs their unwanted stuff from their boot (trunk if you’re American).

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So I wrote a little guide to bootfairs here:

  1. Clear out all your junk and think it looks like the best stuff ever. Mentally top up in your head the £200 you’re gonna make.
  2. Rope in someone unsuspecting friend, who has never done a bootfair so will be unjaded.
  3. Cram it all into your car with your decorating table and camping chairs. Get your float and price labels ready and feel smug at how organised you are.
  4. Get up at some ungodly hour on the most holy of lie in days, Sunday.
  5. Drive thanking the fact no one else mad enough to be up at this hour because a) you can’t see out any mirrors or windows and b) you can’t move the gear stick without everything falling and crushing your arm.
  6. Get there and feel much better that you’re not the only one insane enough to do this.
  7. Panic pull everything out the car and frantically set it up whilst the bootfair pros pull and poke your old belongings shouting ‘how much, how much’.
  8. Panic more because you left your float at home. Go through every pocket, purse and the  footwells of the car in search of change.
  9. Step back and survey your table and notice how your stuff now looks like the shittest stuff ever and realise you’re probably gonna make a fiver not £200.
  10. As people paw at your old stuff you feel slightly naked and like everyone is judging your life right now.
  11. Get really angry and defensive when someone haggles over your possession that is £6 and they want to pay £5 but you’re not budging. That waffle maker was £30 only 3 months ago (fuck you).
  12. Get bored and take a wander amongst the rows and rows of everyone else’s toot. Aisles of soup bowls and picture frames. Clothes wracks of plus sized sequins and every species of animal made of bone china.
  13. Spend your forgotten float at the burger van to break a twenty you had in your purse and sneakily get more change. Try to get something that costs nothing but that is so suspect it should come with a public warning. Its also probably safe to eat a ‘burger’ as a vegetarian because it’s never even seen a cow. 
  14. Return to someone haggling with your buddy over a 20p item. They want it for 15p and it’s 5 pence you difference you cheapskate.
  15. Have a little rush of sales and feel energised by the fact you’ve got up at 6am, broken your limbs hauling boxes and bags and sat for 5 hours in a field for £20. That’s £4 per hour pay and there’s two of you so it’s £2 per hour, illegal.
  16. Get all energetic and upsell everything to everyone and realise you’re the best market trader in the world. Make another tenner.
  17. Feel hard done by when they collect your £5 pitch fee
  18. Start to lose the will to live and stop chatting to people that come by, play on your phone feeling antisocial and refuse eye contact with everyone.
  19. Sink into dispear when you sell the waffle maker for £3 and realise you’re the mug 
  20. Start to panic that you’ll have to take half the shit back home again. 😱
  21. Realise there’s still an hour left and pray for a reason to leave. So you buy another coffee and eat into your £25 profit
  22. Battle with yourself not to buy the kitch picture on the stall opposite because you think will make your house all edgy and arty. You’ll only put it in the next bootfair, not sell it, and be stuck with it for life anyway.
  23. Sell a last few things for 20p because the thought of moving it again makes you feel sick.
  24. Start giving people stuff for free and feel like you’re the nicest person alive.
  25. Get so tired that you can’t cook so get Sunday lunch at a pub with your earnings and feel smug that it was free and oh well you got rid of a quarter of your junk.  

I secretly love a good car boot, if for nothing else the people watching. I also love seeing people’s stuff from their lives. I find them utterly exhausting for minimal return. But I like the idea that things are being reused and recycled, I can’t bear stuff going to the tip. Plus a they’re a great exercise in minimalising and deluttering and being able to afford a lunch out whilst on benefits.

What’s your best boot fair story or bargain?

The Jigsaw

Last night I dreamt of a jigsaw puzzle. It was double sided and so large that it wouldn’t fit the table. I kept trying to find paper or card for it to rest on in sections so that they were preserved whilst I focused on another section. Then I found bigger table to move it to but it would fill this one too. It expanded faster than I could manage. 

Everytime I attempted it I couldn’t remember which side I was working on. Then I’d complete a large section and feel good and a sense of achievement. Like a taunt, I could almost glimpse the larger beast. But then I’d realise another section had fallen apart as I neglected it to focus on the current one.

All this was going on whilst others were in and out of the picture. Some people came to help and got sections complete with me. Others came and their insesent chatter and advice hindered the process. All this was trying to be achieved whilst pleasing these people and juggling the pieces. I had to serve dinner, casually chat to people. Even the task of doing something for myself got in the way. I didn’t have time for anything for me and felt isolated and alone. 

I couldn’t tell what the bigger picture was. As I completed small parts people’s faces would appear and sometimes the people around me would know the story behind who they were. This bit I loved and it kept me going.

I got to the point where the jigsaw was so frustrating that it was easier to give up and live in the moment. To ignore it in favour of activities that I could enjoy that made me feel hapoy. But then it became the huge unfinished project. The big box of broken pieces and failure hidden under the table, threatening to explode from its box as it grew.

This morning I googled jigsaws in dreams and found they symbolise the different aspects of our life coming together. That you should take a closer look to see if all the parts actually fit and come together in the right places. Do they all belong?

This couldn’t be more apt as this week I’ve shredded my life once again and asked so many questions. Do I live in the moment because it’s easier and there’s less disappointment? Do I plan for the future, because everytime I do chance and disaster dictate anyway. Am I a hedonist who is so fearful of failure and pain I miss the bigger picture? 

I’m not sure I’m doing any of this right, and it all feels out of  control. Apparently life is exciting like a puzzle, because we don’t know what it looks like in its entirety. I just feel a little lost and would like a peek at the box lid please? Otherwise how do I know if all the pieces belong and whether I like the picture at all? 

Dear Wolf

It has been a while since we had a little chat. Mostly because I’ve been busy as you know because when I am you sneak in to take a bite or two whilst I’m sleeping.

So it’s been a tough time since not working full-time, trying to manage illness and guilt, both playing off against each other. I have begun to realise that you are a black wolf, the wild cousin of the black dog. You affect me both physically and mentally. We are caught in a perpetual cycle of being ill and tired, or being kind to ourselves then being consumed by guilt for not working or not socialising etc.


My biggest frustration at the moment is when you take up residence inside my head. My head which was once sharp, intelligent, and on the ball. It ran a company, studied and managed large projects. It retained countless random facts and remembered everything. Just lately it’s not even been able to remember simple tasks. 

Most of the time this is amusing, like turning up to appointments a whole day early, despite writing the date out a million times over. Then returning the next day joking how efficient I am. I’ve even tried to lock the front door with the remote for my car and not understood why it wouldn’t work. I laughed at the time I organised an entire road trip to Scotland to visit friends and family. Somehow, despite writing everything down meticulously, I managed to book every visit and every hotel a week behind our actual trip. It was organised chaos on a spectacular level. Luckily, everyone saw the funny side and we managed to find hotels in which to stay. Most things work out eventually so I just laugh it off and rearrange.
Other times though, it is plain humiliating. Like not turning up to a huge schools day on a project I worked on for weeks because my brain just wouldn’t function. I cried when I didn’t see the results and felt like I let everyone down. The amount of tickets booked that have to be cancelled and re-booked because I cant match dates up. Keys permanently left in my front door (yes come rob me) because I forget or get confused. I get to work and they talk about my shift tomorrow and I smile because I had completely not seen that shift on the rota but luckily someone always reminds me (so far). Even as I type this on the train from London to Edinburgh, I redden at the fact the train tickets had to be cancelled and re-booked because, despite checking three times over, I booked entirely the wrong dates and days. Then the ticket collector arrives and I squirm because I cannot find the ticket I was holding just 3 minutes before. It’s humiliating and I can laugh most of the time, but as someone who was so good at life before I feel so stupid now.
The humiliation that has taken me sliding down every rung of the ladder and smashed my face on every step. I still try to see the funny side and always will. 
So Wolf, this week has been one of continuous humiliation, of which I’ll continue my frustrations in my next letter.
At the moment dear Wolfy, I ask that please can you leave my favourite organ – my brain – alone. I’ve always quite liked it and I need it most days…

Reality

For all those that may think my 6 months off is a lark heres a link to a little video. Do you know what it is and it isn’t fun, just like working is and isn’t. This is what most days look like unless I’m off finding a small break in the misery like flying a kite or walking my pup.

Plus I’m broke, on the verge of homelessness and generally a bit of a whinge.

I also carry massive amounts of guilt for not working.

https://www.facebook.com/plugins/video.php?href=https%3A%2F%2Fwww.facebook.com%2FChronicIllnessOnThemighty%2Fvideos%2F1374582545896823%2F&show_text=0&width=560

Happy New Year with Bullet Journaling

So last year I made New Year’s resolutions then as you may know ‘life got in the way’. I have a habit of starting things and not finishing them, I carry a lot of guilt about it. Partly it’s my personality and getting excited about the next new shiny thing that comes along, dropping the old boring thing I started. It’s also having multiple chronic illnesses which tend to dump on everything. Oh, and then that life bit, I’m not the luckiest soul and 2016 was an absolute shocker!

So this year I debated on whether I should do the whole resolutions thing again. I thought about making things realistic, or achievable. But that’s just not me, I need to be interested and excited and reach for the sky. The difference is how I react when I come thudding back down to earth.

Last year I dabbled with some Bullet Journaling and wanted to continue with a brand new journal for 2017. For various reasons I’ve always shied away from journaling ing and committing to paper. A Bullet Journal was the ideal balance between a to-do list and a diary for me. I began with a basic journal based on this article and bulletjournal.com.

So on the 1st I made an Amazon list of fancy pens and a new Moleskine notebook, and then realised I was falling into my old habit of overspending. So I raided my art materials and as predicted had lots of beautiful materials already to work with.

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So here is what I did:

  1. I left a page spare at the front for my index/ contents. Every page is numbered in a bullet journal and every entry is logged on this page.IMG_3635.JPG
  2. I turned the page and thought about 2017 and brain dumped all the hopes and needs onto the page. I didn’t limit myself, I just poured my heart out…IMG_3638.JPG
  3. Next I looked at the ‘cloud of words’ and put them into categories. I wrote them as a list then made these into columns on how much time and effort I wanted to put into them. ‘Being secure’ is at the top of my list, unsurprisingly, as at the moment I feel so insecure. I colour coded them so I could later see how much time per week I was dedicating.Processed with VSCO with t1 preset
  4. I took each category and thought about how I could achieve them. Theres lots of cross overs and you’ll see in the pictures one category feeds another.Processed with VSCO with t1 preset
  5. Into my life, which is chaotic at the best of time, I wanted to introduce a routine. So I began with an easy morning routine to follow everyday. I aim to create a bedtime one soon to go with it. 
  6. I then divided the activities from earlier on into my first to-do list of 2017. This I divided into ‘one off tasks’ and ‘repetitive tasks’ that happen daily or weekly.Processed with VSCO with t1 preset
  7. I then added a year planner to be able to see the whole year month by month.Processed with VSCO with t1 preset
  8. Finally I delved into January. One page for the whole month day by day. Then I transferred items from the 2017 to-do list into the monthly one
  9. Finally I drew out the week by week journal and added a key. I also included a space for tracking my health and daily gratitude. My key is the same as the standard bullet journal key
    • X = Task Complete
    • > = Task Migrated
    • < = Task Scheduled
    • o = Event
    • – = Note
    • * = Priority
    • ! = Inspiration
    • Eye = Explore

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  10. It sounds complex and labour intensive, and in a way it is. But I think it’s worth it to have a practical journal that works for me. I already love and treasure my 2016 journal, as painful as the moments were that fed it. 

I know there are many prettier examples out there, but mine is mine and works for me!

Finally I read a chapter today about beginning a new project or learning something new:

‘In the beginner’s mind there are many possibilities, but in an experts there are few.’ Suzuki Roshi in Pema Chodron’s ‘The Places That Scare You’.

Chodron goes onto say that we all begin somewhere and at every stage of learning or activity we should  be ‘open, flexible and kind’. Resolutions should not be absolute but ever shifting guides to help us learn or steer us. Our life is an experiment and we are not born as experts. She concludes:

‘At the end of activity, whether we feel we have succeeded or failed in our intention, we seal the act by thinking of others, of those who are succeeding or failing all over the world. We wish that anything we learned in our experiment could also benefit them.’

So I’ll be doing just that, learning from the process and not judging myself on the results. I will also share this latest adventure with you…

The Art of Slow

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Well I’ve chatted a lot about the negativity of chronic illness, I’ve also searched hard for the positive.

Recently I’ve managed to find myself in crisis, one of those moments when it never rains but pours. I made a list of ‘losts’:

  • My health
  • My work
  • My heart
  • My home

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Pretty huge things and I don’t have much left. But to reexamine the list, stop and breathe has truly been insightful. Despite my stubbornness I’ve been forced to halt and reassess.

  • My health  I do less things and a slower pace. These are things that I enjoy.
  • My work I transfer my skills to find something that fits with the above. Work is about love not money.
  • My heart It’s about time I stop letting others destroy me and love myself. In turn I make room for good people.
  • My home I simplify my home and living to make it work for me and love everything within it

So I welcoming ‘The Art Of Slow’ whatever this means! I’m discovering it day by day as a personal journey. Adapting to the seasons and the needs of each day as it comes. Savouring moments and building them into something special.

To start off I’m going to do a few of these 25 suggestions to savour November

Thank you chronic illness, you gave me the gift of slow…