The tracker contains all 28 phases of the moon from the New Moon, through the Full Moon and full circle towards the next New Moon. There are three circles in the middle for you to track whatever you like! fill in each day with your own score using colours, symbols or numerical scales. Some examples of what to track include:
What will you track with yours? Remember to share them with me by tagging @TheresAWolfAtMyDoor on Instagram.
You may have noticed that in my last post I began talking about the moon. Moon magic is something that has interested me for a while and I have been experimenting with over the past 3 or 4 years by paying attention to the cycles and growing my knowledge. I thought I’d share some simple New Moon magical activities with you.
As the majestic moon disappears from our skies many of us will feel extra fatigue (is that possible?!), emotional exhaustion, and a lack of motivation. As a spoonie I’ve learned not to fight this but know that it is a natural state for our bodies to be in. Why not embrace the darkest of the days and rest and recover ready for the cycle to start again a new. I find that understanding my energy has periods of activity and recovery both manageable but also a bacon of hope. Here’s some simple things to do (click each activity to jump to the instructions):
One of the simplest things you can do for the next cycle of the moon is set up some intentions. These are things you would like to complete using the cycle of the moon’s energy. I like to keep it very easy and pick no more than three, this isn’t about overloading yourself. This month I am choosing to: 1) Make Christmas Presents 2) Increase my daily activity/ exercise 3) Work on making my home my ‘nest and burrow’ (cosy and nurturing)
You could get really creative here too. It doesn’t have to be a list but could be a collage of images that inspire you or just words and drawings. Do what brings you joy and treasure these plans.
Did you know that it used to be a tradition to hold coins under the light of the emerging new moon? That it was done to improve a financial situation or attract more money. This can be transferred to any area of our lives.
Making a New Moon Spell Jar
A new moon spell jar is a simple spell to bring abundance of the things you want into your life. To make a basic jar all you will need is a jar with a lid and a pen/pencil and paper. Each night before you go to bed write down something that happened that day that you are proud of, or grateful for. Try to think of things that you would like more of. Put them into the jar and sit them on the window sill under the moonlight. As the moon’s energy grows, so will the desires you have in the jar. On the full moon (find out your current moon phase here) open the jar and read to yourself all the wonderful moments and achievements made so far. If you want to make it more powerful add a magnet, piece of quartz or some cinnamon to the jar.
For those who journal, or who are just interested to see how their energy waxes and wanes with the moon, setting up a tracker can be a powerful tool. A simple tracker could consist of writing the moon phases out, then scoring your energy that day from 1 to 10. Keep it by your bedside table to remind you each night. Don’t worry if you miss some entries, a few times a week over 3 or 4 months will give you a real insight into what is happening. To make it more complex you could add your moods, feelings or menstrual cycle. I adore Natasha from Foraged Botanical’s menstrual moon tracker:
Spend some time in your journal
The new moon cycle marks the point at which we feel the most stress and find it hard to express our emotions. Some time spent with your journal today could really pay off, whether this is trying to identify which emotions we are feeling and why, or working through a problem. I was once told that you can write absolutely anything ‘as the page can take it’. The page won’t judge you or control you, its space just for you to get rid of some of what you’ve been carrying. Ask yourself these simple questions: 1. What do I want to let go of? 2. What is now unimportant? 3. What is no longer serving me? 4. What is holding me back? 5. What has come to an end?
When you have finished feel free to destroy it by burning the page (be careful and do this somewhere you are not going to set the house alight), or by burying it.
Make a moon mantra
Making a mantra is a form of affirmation that that can be repeated to ourselves to increase our positivity, or to understand ourselves. Unlike positive affirmations they don’t eliminate our negative thoughts but reframe them as a way through a challenging situation or mindset.
Here’s what I do:
Catch your negative thoughts by writing them down when they happen e.g. ‘I haven’t worked out this week and am a lazy person
Begin your sentence with the words “I am’ ‘I want’ or “I need’. Don’t leave room for maybe, we are being definite here. The mantra needs to be about you and not other people.
Use positive words. This may sound fake and feel uncomfortable, but trust me it works. Try to take the negative out of your original statement and turn it into something positive e.g. ‘I am someone who listens to my body and knows when it needs rest or activity’ or more simply “I am in touch with my body and its unique needs’ ‘I need to take time to rest to do more activity in the future’.
Use the present tense. This is about the now, not the past or the future. You are already doing this thing.
Keep it simple, brief and specific. You want to be able to repeat it to yourself.
Making change: If you want to make a change using your mantra try using an action word ending with ‘ing’. e.g I am resting to care for myself. Or ‘I am consciously increasing my activity by a manageable amount each week’
Add emotion: to make the ‘spell’ more powerful add a positive emotion e.g. ‘I am enjoying listening to and looking after my body’
Remember to drop by and share what you are doing this lunar month by leaving a comment. If you have enjoyed reading this post please visit my Patreon and buy me a coffee. It helps towards the running costs of this blog and fuels my writing.
Moon Illustrations by Sarie Oliver (my Sister). Please give her a follow on Instagram. We are aiming to add some limited addition prints and personalised trackers to Patreon soon.
We are nearing the end of October and Autumn has well and truly arrived. Many of us are feeling the uncertainty ahead with local restrictions and changing news reports. The change in season can mean changes in our bodies too, especially to those whose bodies are sensitive. Many of us find that symptoms like joint and muscle pain or low mood get worse. Maybe a sense of melancholy or sluggishness sets in. Last year I wrote about the change from Summer to Autumn, and how it can cause flare-ups. You can read about it here and here.
On the plus side symptoms such as heat fatigue, photosensitivity and dizziness can ease. And most of all, feelings of being inside and cosy can alleviate the guilt of resting and missing out outdoors. We finally allow ourselves to nest a little, to sit by a fire, enjoy hot baths, eat nourishing food and hunker down.
I thought I would share some things we have been doing this month to celebrate the new season in a slow, gentle and accessible way. Over on Instagram we are chatting about our favourite Autumn activities so come and get involved and add what you like to do by sending me a message.
With your help so far I’ve compiled 7 accessible things to do this Autumn
Click on each activity to take you to a more detailed description
For me its easier to move without fatigue on sunny autumnal days than it is on hot days (although the cold and damp causes joint pain). I don’t react to the sun or the heat and wrapped up warm I can walk further and move more. I love a walk to see the changing landscapes. And often my pockets fill up with pine cones, conkers and found objects. If you want to bring in a little magic, folklore says that putting an acorn in your pocket keeps you young. I think I need my fill my pockets to the brim!
Keep it simple by going on a local outing. Even if its a stroll or roll around your block. I love noticing how the trees and plants I see every day are changing, or absorbing how the world smells and feels different. Noticing the small is magical even if its the same route you always take or simply your garden or looking out the window. Try something different explore with your senses. For example the five senses grounding exercise could be used (or a variant where accessible).
If you fancy an adventure further afield then head to a botanical garden to take in some of the spectacular autumnal trees. Public gardens are great as they often have accessible walkways and routes. I can highly recommend the Royal Botanic Gardens in Edinburgh. They welcome assistance dogs and have mobility scooters and wheelchairs available to hire. The gardens are free to enter, be aware that COVID safety measures mean you will need to book your time slot in advance.
At the opposite end of the UK is Westonbirt, The National Arboretum in the Cotswolds. They offer one of the most spectacular and dramatic autumn displays. They They are also operating a time-slot system and have mobility scooter hire. They allow dogs and there is even a Gruffalo trail for children including an Autumn trail with activities. And a spectacular tree top walk accessed by a series of accessible walkways and bridges..
Getting crafty can be as simple as displaying some seeds and dried flowers and branches in your home. A collection of dried seedbeds and flowers in a simple pot or bottle or tied in a bundle can look stunning. Or press some leaves then make a garland on a string. Or go the whole way and make an autumnal ‘altar’ with seed heads, pine cones, acorns, orange or brown candles, leaves, and seasonal fruit and vegetables (apples, pumpkins squash). Add to the whole effect by using spices or incense like cinnamon and clove. If you are celebrating Samhain change the candles to black and introduce black feathers and images of black birds, spiders or cats. Use stones such as onyx, obsidian or moonstone. Light incense or introduce herbs such as sandalwood, sage and rosemary. You don’t have to be a witch to enjoy bringing in the natural world.
Cosy days are an ideal time to start a new project. If there’s something you have been wanting to try like knitting, embroidery or sewing now is the time to begin. More time indoors means more time to indulge in something creative and crafty. I like things that keep my hands busy so, I have just started to make a dress (something I began learning a couple of years ago). I have also ordered some knitting supplies (to try something brand new).
Find your thing and don’t get put off by failing at first, it’s also ok to try something and say its not for you. I tried to make a crocheted fox a few years ago, it was so mangled and disproportioned I gave it to the dog!
My top tip would be don’t try to do it all at once. Break down the project into tiny stages and do one or two at a time. For example, just finding a pattern is one stage, ordering materials can be another. The project is for you to enjoy and can take as long as you want. I would love for you to share links in the comments to what you are making at the moment or where you have found free craft making resources.
Celebrating Slow and Seasonal
In October we have two full-moons in the calendar month. The second full moon is known as a blue moon (read more about it here). The first full moon is on the Oct 1st and the rare Blue Hunter Moon is Oct 31st meaning the entire of October is surrounded in the full moon energy.
The moon moves in cycles starting with a new moon when we see nothing in the sky, peaking at the full moon then waning until the next new moon. One theory is energy patterns can follow the moon’s phases and we can use this to guide and frame our own energy and activity. If nothing else I like to be able to see the passing time as a physical entity and planning guide. It’s also a great energy pacing tool as a lunar month is a slow but achievable timeframe. Here’s how I plan:
The New Moon: Time to plan new projects and set into motion ideas and goals.
First Quarter: Put into place resources and move into activity.
Second Quarter: Increasing action and activity.
Full moon: Reaching peak energy and completion until it’s time to celebrate achievements.
Waning Moon: As the moon wanes close and reflect on projects and tie up loose ends. A useful time to see what still needs to be worked on and carried into the next cycle.
During the last quarter when energy is at its lowest take some down time to restore energy for the next cycle. Try to stay present and in the moment.
This Autumn’s moons:
1st October Full Moon
16th October New Moon
31st October Full Moon
15th November New Moon
30th November Full Moon
14th December New Moon
If you only do one thing this October, I recommend having a wardrobe switch around. Put away any summer clothes away you know you won’t wear and go through your winter stuff. Get some help doing this if you need it. Why bother?
Its easier to see or access fewer clothesr wardrobe
You can plan outfits by seeing or grouping together what you have.
You can get rid of anything you know you won’t wear it because it doesn’t fit or is uncomfortable.
Any items that need care such as woollens needing a wash, de-pilling clothes to refresh them or mending holes can be done so your clothes are wearable.
It saves you money as you don’t buy items you already have because you’ve have forgotten about.
One of my fave TikTokers Lucy Edwards explains why it helps her here
In the Kitchen
Who else is excited about cold, cosy weather foods? Pies and puddings are back. Soups and stews are simmering. It’s time to get that slow cooker out of the cupboard to begin batch cook your fave recipes. I love a good bean chilli infused with spices, that’s been bubbling all day in the slow cooker cauldron.
The Great British Bake Off is back too and its the perfect escapism and Neve have we needed it more than this year. The 21st of October is National Apple Day in the UK, why not celebrate it with a home-baked apple crumble?
My recipe for Apple Crumble is below for free to those who subscribe of this blog.
I hope you stop by to say hello and share what you are doing this season by leaving a comment. If you have enjoyed reading this post please drop by my Patreon and buy me a coffee. It helps towards the running costs of this blog and fuels my writing.
This post has taken me the best of 3 years to write. Mainly because I have personally found exercise such a triggering (and I mean this in real mental and physical health terms) topic and I understand if as a spoonie you do too.
This week we’ve been chatting a lot about exercise over on Instagram and I’ve saved the highlights of these for you to read. In summary as a community we face barriers to exercise such as:
Unable to do the exercises in classes and videos etc as they are aimed at a mainstream audience and don’t understand the complexities of disability
Places like gyms and swimming pools are inaccessible and expensive
We have had bad experiences
Exercise can cause more pain and fatigue
We compare ourselves to others and feel inadequate and what’s the pioint
On the plus size we also feel a sense of joy and accomplishment when were are able to exercise. It can relieve pain and build strength. So the key to it really seems to be that:
exercise doesn’t look the same for everyone
some is better than none
trying lots of things to find the right fit is important
reaching out and finding exercise that is tailored for disability is vital
don’t exercise for anyone but yourself and your own reasons
So let’s get stuck in and see what I’ve found along the way. Here’s the mandatory (cue eye-rolling) bit that says I’m NOT an exercise specialist, doctor or trained professional. Here’s what is important:
Do not cause yourself harm by trying something without consulting your doctor or a professional.
What works for me may not work for you at all.
Don’t compare yourself to what I can and can’t do. We all have different and beautiful bodies who can do different things. Love that, embrace it and move in your own way.
Remember a little is often more. if its 5 minutes of movement that celebrates your body then thats awesome.
For those who struggle with lots of text here’s a quick menu to skip to the sections.
Although I’ve always struggled with energy and exercise I remember a time when my mobility and energy started getting worse, pilling on the pounds (learning this is ok and unlearning my own fatfobia) as I took more medications and gradually moved less. Who really wants to exercise when it hurts and you feel like you have the flu? Exercise became something for me that was painful, triggered fatigue and caused injury. I’ve never been super into sport, probably as I am hyper mobile and prone to injury. I have always loved swimming, cycling, walking and yoga. Not being able to do these things takes its toll on your physical and mental health.
To add to this I kept seeing posts such as “go hard or go home’ and ‘there’s always someone busier than you in the gym’. Yes these statements are designed to guilt you and yes they are absolutely loaded with ableism. They may motivate a certain type of person but to others, like myself, they put me completely off and made me feel awful about myself.
Then one day I mentioned this to a friend when I bumped into him whilst at the gym. I was there for Water Therapy, which I have done as part of the exercise referral scheme for the past 7 years. He said to me ‘I see you here all the time though?’ and I replied that I only did water therapy and supervised gym sessions and they were very, very low key. His reply was that it didn’t matter what I did compared to anyone else and my going hard or going home was turning up.
I’m not going to pretend the comparison went away, but I know that by being there and doing what I can I am doing something. I believe that any of us, what ever our disability or restriction can do the same too. I’m not pretending the accessibility and financial barriers are nit there. But if we challenge them and ask for more then we are able to ‘exercise too’. If you can find your own way to move and make your body stronger in a way that works for you that’s exercise. And that’s why I’ve been inspired to write these series of posts as my experience and guide to exercise as a spoonie.
I am going to repeat here that I am not a professional in terms of exercise or medical training. As always you should check with your health professionals if you are in doubt. What I can offer is an honest account of what I have found helpful and I’m am never ever going to say any of this will make you better or cure chronic illness. I do believe we are happier and healthier when able to take part in exercise in what ever shape that looks like for you. So here is what’s helped me.
Exercise referral scheme
As I mentioned above I started this scheme before anything else. Its a 12 week guided programme working with a specialist(s) to get moving again. There is a small fee to join which is no where near the price of memebrship or classes. In fact by paying there is motivation to turn up. It’s offered by the Nhs to qualifying patients.
(To those in other countries, I can suggest talking to your GP to ask what is available where you are.)
I have to be honest I was really put off by the first gym I joined. They didn’t listen and gave conflicting advice. (They told me I could get in the pool with RA but not with Lupus. I asked why and they said because of risk due to medication like Methotrexate, which is used to treat both. I checked with my doctors and this is rubbish!) But determined I started again with a different gym and loved it.
Exercise and the instructor
The instructors at my new gym took the time to get to know me and my conditions, they even phoned my physio to ask what was good and bad for me. They never push but just support. I do Water Therapy ( not the same as hydrotherapy but similar) which is working to build strength and flexibility in the pool which minimises pain and pressure on the joints. I also do an exercise class and supervised gym sessions. If you find the right gym then this programme is such a good starting point. Don’t be afraid to say if the gym or instructor isn’t working for you. They have to get it and be trained in what disability, illness or impairment looks like and works. They will also provide specialist equipment such as different stairs or a lift to get into the pool. For me getting the right support was the key to building my strength and confidence.
Although you may not be jumping into cardio and aerobics or Hiit (shudder), you can still get moving in a variety of ways. Just small movements , whether its strength exercises, yoga, or walking get us moving. And a little movement is better than none. In this section I’ve provided a number of ways to try to ease your way in to movement and find what works for you.
Active 10 we’ve all heard of Couch to 5k over the past couple of years and probably know of at leastt 5 people doing it. With joint pain and fatigue the idea of running makes my blood run cold. The only way I am running is away from doing any running at all! I was delighted to find out that the Nhs also has a lesser known app called Active 10. This is an app that is entirely based on walking and building up active minutes (brisk for you walking) each day. The key is to start small and gradually increase and the goal is 10 minutes a day. It is available to download for free here. PROS: Its free and simple CONS: it relies on walking and remembering to take your phone!
Stretching and Strength is really important for our flexibility and staying mobile. This supportive workout programme by Katy (Invisible I) is great because Katy understands fully how challenging basic movements can be. The video below is her sharing what she learned on the 5 week pain management programme. She is super gentle and guides you through a series of exercises to create your own tailor made exercise programme. I like it because there is no one to compare to and the emphasis is on some is better than none. PROS: Its free and you don’t have to get dressed or leave your home CONS: No one is checking you are doing the work correctly and it relies on you motivating yourself
Building Up Strength Gently: At the beginning of lockdown I went into shielding and was unable to go to the pool or gym. Also being unable to leave the flat meant that my already sedentary lifestyle was becoming more limited. I was sent a list of exercise resources by the shielding service and began with some basic workouts. I liked the video below which from The British Heart Foundation. It’s a nice easy full routine to follow from beginning to end. It gives you something to repeat and on a regular basis to build up strength. It also gives variations for different abilities. PROS: it seated or uses a chair to lean on. They also provide different levels to make it easier or harder. It’s also free. CONS: some relies on standing.
Yoga For Bed Days: I can’t tell you how happy I am that there is a yoga video made for when you can’t get out of bed. I’m not suggesting this is for when you are absolutely broken. But its something to pull back to when you want to move a little but can’t muster the energy to get your mat out. Or if you can get your mat out its super gentle. Even if this feels like a super easy routine for you have it in your arsenal to pull back to when you need it. For me a fluctuate so much with flare ups and injuries I find myself starting back at the beginning of this process all the time. And doesn’t worry if you still find parts of this hard, legs straight in the air rarely happens for me. PROS: super easy and shows how little movement can go a long way. CONS: I wish she’d been in an actual bed!
Moving up to intermediate
Getting your heart rate up. Because I wasn’t able to leave my flat and walk in lockdown I was very aware hat I wasn’t increasing my heart rate. I find cardio hard because of POTs and circulation but I do feel better when I do it. I’m not someone who gets an endorphin rush and prefer slow movements. But I thought I’d give it a go, everyone else was doing Joe Wicks and I knew that was a no go. So I hunted for some spoonie friendly exercises. I love Cocolime Fitness because she is knowledgable but real. She challenges me but also gets out of breath and wobbles. The important thing is to start really small and I mean literally 5 to 10 minute workouts like below. PROS: it’s free on YouTube. The exercise are low impact on the joints. The raise your heart rate by you moving the largest muscles in your body. CONS: No one is checking you are doing it right. It is easy to pick a too difficult level. I’ve done it and nearly committed and passed out then been unable to move for days!
Yoga can also be done in levels too. If you haven’t heard of Yoga With Adriene then where have you been?! I love that she has yoga for EVERYTHING. I love the yoga for Chronic Pain and Yoga for Migraine routines as they not only are about moving but they are designed to help as relief too. She has so many videos on YouTube and once you sign in you can save all your fave accounts and videos to come back to. PROS: there are so many free videos of all different levels to choose from. Oh and Benji the dog is always a joy. CONS: No one is checking what you are doing. It is easy to pick something too difficult or compare to what others are doing. For this reason I would stay away from things like the 30 day plans.
Zoom Yoga. The otheryoga classes I have been doing during lockdown and continuing are online classes live on zoom. You pay per class and join the zoom (video call) session in which the teacher teaches live. You need to have space and your own equipment. Its great if you were previously attending classes and now can’t, get in contact with your teacher as many have moved to teaching in this way alongside their in person classes. Isn’t it amazing just how accessible things have suddenly become?! If you don’t know a teacher ask your friends and family as they may know someone. Try a beginner class like relaxation yoga first. PROS: you don’t have to leave your hime. The intructor can see you and make suggestions and vary the skill level. CONS: it costs about £5 to £10per session (when you do 3 sessions per week this can mount up) and you need to buy your own equipment.
More advanced levels of exercise
Increase the length of your routines. I began to slowly increase how long I was exercising for. Over three months I managed to do cardio based exercises for 30 minutes! But this was slow going and took a long while. Don’t be tempted to make big leaps, there’s nothing worse than overdoing it and feeling defeated, in pain or unable to do it. The truth is you can do it, rest, recover and drop to a place you can do it. Again I love Cocolime Fitness for her varied and fun routines. The ones with dance are a firm fave of mine. She does also offer paid programmes and I have considered them as I love her approach. PROS: varied, fun and different levels and duration. CONS: only a limited amount of free content. Easy to overdo it.
Seasted Workouts. Chair Workouts is a great channel for those who find standing and working out not an option or difficult or painful. My fave workout is this one. It does involve moving the legs so be aware of this. It shows different levels and I like the instructor as he’s real and not patronising. Its hard though and the arms above the head kills me! PROS: a challenge but easy on the joints CONS: lots above the head which makes me dizzy.
Cardio in a shorter time frame: The British Heart Foundation have this beginners work out to get your heart pumping. Though for me the length of the video was deceptive as some of the moves like jumping jacks are hard on the joints. Its a good way to get into basic aerobics but I think requires a certain level of able bodied fitness hence why I have put it in the harder section. PROS: a shorter routine that really gets your heart going CONS: more challenging than it appears.
I hope this has in some way made you feel seen. That you know that sick bodies, disabled bodies, fat bodies and tired bodies can move. But that is unique to you and on your terms. You can ‘exercise’ if you are in control. Remember the word exercise should mean what yo want it to. It should look like what works for you. It should be enjoyable and most importantly only be for you. Let me know in the comments what you have found that helpful and let’s together build a database of exercise for everyone to dip in and out of.
Hello to anyone new to this space and to those who have followed for a while. If you follow me over on Instagram (where to be honest I feel most active because of the community) you will see that I’ve created a new account @theresawolfatmydoor that is separate from my personal account @spoon.moon.wolf.
There’s A Wolf At My Door is an image that has sat well with me from the beginning of writing this blog. I describe living with chronic illness like living with a wolf constantly at your door. She is the uninvited villain (from fairytales) who creates disruption and havoc. She often stops you leaving the house and if you fight her you are left wounded and scarred. She takes on many forms: physical, mental, social and political. She doesn’t just affect one person but often the whole household she visits. She creates #SpoonieProblems such as loss of mobility, low energy, loss of income and insolvency, weight gain, prejudice and homelessness. Many metaphors have been used to describe these from very similar analogies such as Churchill’s ‘black dog‘ in mental health, to counting spoons (Spoon Theory) when managing fatigue.
I found the wolf because I was initially misdiagnosed with Lupus and as the name Lupus is derived from the wolf. For over ten years I worked as a storyteller and felt connected to the wolf as the villain in stories (there’s a great article on wolf stories here). The wolf is that sinister nighttime creature of terror. It howls at the moon, hunts in packs and on occasion is known to eat humans and pigs! Most of us have heard of the Big Bad Wolf. I feel that living with chronic illness is just like being a Little Pig or Red Riding Hood, it’s living with a threat constantly there.
When I began this blog I started by writing to the wolf and documenting how she was affecting me. I felt like the more I tried to shut the door on her, the more she knocked, and the more she fought to get in. Every time I’d fight her I’d be left with battle scars such as crumbling knees and swollen joints. Ignoring her presence and getting on with my life inside my house meant she just got bigger and smarter. She was the unwelcome visiter who didn’t just affect me but also those around me. The wolf is all encompassing; she prevented me leaving the house and working or having a social life, she gets inside my head and muddles my thinking and increases anxiety, she puts pressure on those I live with and she steals my money and time. She is always lurking and I never know when she will knock. So after a while I began to acknowledge the wolf and let her in. To accept that when she visits I need to stop and slow down and try to feel less guilt. To even appreciate that the wolf isn’t all bad but maybe can bring some good.
So over on my personal account @spoon.moon.wolf I shall stay with stories about me and about my daily life, slow living and creative adventures. The new account @TheresAWolfAtMyDoor is growing into something more. It is becoming a community for those who live with wolves, those who have become #thewolfpack. It will be a place in which we can share what our lives are like when they are shared with a wolf.
So here is my vision:
The Gift of Slow
The wolf is a creature of nature, she rolls with the seasons and appreciates a simple life. Living with her means that I move with her rhythms (listening to my body and how it is responding to the wolf). It’s a life stripped back to its basics: good food, low impact, creativity, frugal and secure living. Nothing can be hurried and we can’t multitask. We listen to our bodies and rhythms and find our own pace. For me this is doing tasks but allowing them to take a longer than usual time. Like creative projects that span a year, and that is ok. Or gardening a little at a time in a manageable way. Or creating thoughtful meals from scratch that nourish and heal. I found that by the wolf stealing my energy she gave me the gift of ‘enforced slow living’. I want my accounts to share my learning and slow living ideas with you and to include the wisdom of other who feel the same way.
So right now if you are local you can join in with ‘The Spoonie Sessions’ which is a monthly meet up group in Canterbury, Kent. The meet up will focus on small creative projects and discussion. There’s info on this here. I’m looking into developing retreat days too.
Coming soon are weekly blog posts about ‘Wolfpack’ issues, and creative and slow living adapted mini activities and projects. These will capture the essence of what I have described above.
For me finding out I have an incurable chronic illness was devastating. To be honest even though I’m told to stop I still cannot fully accept that this is the way it is. This, along with losing my housing, company and relationship etc. meant that I fell apart. Despite coming close I’ve never given up and through tenacity, and resilience, and the support of others found a way to live with the wolf. As much as I don’t like being told I am always strong I know that most of the time I am. Going through these trials makes you realise that the wolf isn’t always on the outside of us but we have a fierce, brave and occasionally grumpy beast inside. I don’t think I am different to anyone else, I’ve just been asked to prove it.
To honour those who live with wolves I am launching my podcast in the Spring. This podcast will be fortnightly interviews with other ‘spoonies’ to talk through their stories of triumph and adversity when with living with a wolf. The making of this can also be supported on my Patreon.
The Wolf Pack
The last and most precious gift is finding that I am part of a wolf pack. Becoming part of the community of spoonies on Instagram has been the most rewarding and supportive thing that has got me through some difficult times. Being one of many allows you to share commonalities, to fight discrimination and ableism and to get advice.
My vision is that Theres A Wolf At My Door in all of it’s formats is a safe and non judgemental space in which people can explore their experiences of living with a wolf. It is not a place of comparison but a place of support and advocacy. It’s a place in which we can creatively explore what being in a wolf pack means.
So I hope you’ll join me on this new adventure. Please let me know if you would like to collaborate or contribute.
Welcome Autumn and my favourite time of the year. I adore September and October with their golden afternoons, the abundance of foods, and the cosier evenings. I don’t know about you but I don’t fair well in the heat, it exhausts me and the sun irritates my skin. Neither do I do well in the cold and damp, it makes my joints ache and my mood dip. Autumn, however, seems perfect. I love a crisp but sunny morning, or an afternoon wrapped up warm for a gentle walk. But something else happens in Autumn that leaves us spoonies floored and I’m not sure quite what it is. I’ve thought through a few of my theories here to try and come up with a Spoonie’s Guide to Autumn.
So every time a season changes we find ourselves having to adapt. I find at these changing points I’m forever saying ‘we’re just not used to this heat/ cold/ darker nights/ humidity/ damp’ (the list goes on). Yes us Brits like to talk/ moan incessantly about the weather, but I’m sure there’s more to it, especially for us hypersensitive beings. And it seems there is actually proof of this.
The study examined how this happens on a genetic level and found that when looking at genes “a quarter showed clear signs of seasonal variation”. The genes that were of most interest included ones associated with immunity and inflammation. Interestingly it wasn’t the degree of cold that was initiating the changes but the temperature changes themselves as ‘During cold, winter months – December to February for people living north of the equator and June to August for those in the southern hemisphere – these genes were more active. When they studied people living close to the equator, where the temperatures are fairly high all year round, they noticed a different pattern. Immunity and inflammation was linked to the rainy season, when diseases such as malaria are more rife.” A change is temperature is all that is needed to trigger flare ups as it directly affect the cells and ‘that increase in inflammation could now be a risk factor for diseases of modern life’ Prof John Todd, Study author. Big stuff hey?
Viruses and other factors are also linked to an increase in symptoms and flare ups for Spoonies. Many reasons have been given to why this season is prime cold and flu season. Maybe it is because we stay indoors more, have more close contact with each other or beginning of university and schools terms mean more people mixing. One thing is for certain and thats for those, like me, who take immuno-suppressants the exposure to viruses, infection and bacteria is a headache all in itself. Immuno-suppresants mean that, surprise surprise, our immune systems are suppressed and do not work as well in fighting things off. So don’t be offended if you have a cold and I instantly grab for the hand gel. Getting a cold or virus also can trigger a flare up, even if we don’t fully develop the original cold. I get far less colds than other people but my body knows if I’ve come into contact with one. Unfortunately my immune system just cannot tell the difference between the things its supposed to be attacking and my own body. At the recent Behçets Syndrome Society conference in Bristol, Professor Fortune said that she has a date in October circled on the calendar every year for when they have to open up loads of emergency appointment slots as so many of us flare.
So how can we deal with all of this? My answer is be prepared as you can and a little acceptance.
The Nature Communications study above concluded that as well as a genetic change “diseases and other factors, such as nutrition and stress, could affect how genes function.” So lets build some of these into the survival guide.
How to embrace and survive Autumn
Autumn Activities – Try some of these spoonie friendly adventures to help with wellbeing
Get outdoors. Take a visit to somewhere you can take in all the beauty of nature and how dramatically its changing at this time of year. Do what you can, you don’t have to hike for miles across farmland and forests to appreciate the changing landscape. You could take a car ride, visit a city park or sit in the last of the warm sunny days in your garden. Boosting vitamin d levels at this time of year can really help with the impending winter blues too.
Get crafty. There are so many things that are nice to make as we want to spend more time being cosy indoors.
I am embroidering fabrics in preparation for Christmas presents. If you are like me and like to hand make your Christmas presents, start now so you don’t put pressure on yourself.
Get Cosy and warm and hermit without guilt. Get out blankets and hot water bottles ready for colder evenings. Give them a wash and some care before they do into their full winter sofa bound days. Enjoy activities that are away from screens (save those Netflix binges for sick days). Non screen time is much better for you and there are things that can occupy you. I’ve just found a new love for jigsaw puzzles!
An Autumn Feast – Wow there’s food aplenty at this time of year, especially after a long hot summer, heres how to make the most of it. Enjoy homegrown fruits and vegetables. If you’re like me and have a garden then at the moment you’re probably overrun by crops such as tomatoes. When I’ve had the energy I have been picking them in droves and jarring them as passata. A basic recipe can be found here and its easily adapted to include herbs and spices you’ve grown too.
Get to a local food festival and treat yourself to something scrummy. Food festivals re great at finding a huge variety of foods and you’re more likely to come across diet friendly snacks too. Ive been to two in the past three weeks including a chilli festival!
Go on a forage. From September onwards, you can pick a huge amount for free from forests and hedgerows. Pick fruits such as elderberries, blackberries, rose hips and more. I turned my elders into a vitamin c boost spiced syrup and my hips and chillies into a spiced jelly. Theres also other treasures to be found like sloes, bullaces, crab apples, cob nuts, sweet chestnuts, mushrooms and fungi… just remember to only harvest them if you are 100% sure you know what they are!
Autumn is transition, change and drama. In slow living it’s the time to prepare for what’s ahead. Don’t rush it, save your spoons, enjoy the beauty and prepare for the winter ahead.
To find out more about things mentioned in this post visit…
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.
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.
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.
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.
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.
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.
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.
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.
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.
We really are, we create nothing but waste. First of all pop over to People are Rubbish on Instagram to see just how bad we are! Rubbish tells a story, one in which we are the villains…
Last year I began ‘slow living’ with the goal of simplifying life, buying less and better quality. As an extension of this I began a personal war on waste. Then just before the new year the BBC’s series Blue Planet was released and the fish swimming in our plastic waste broke our hearts. If you missed it you should watch it here.
I don’t want to waste time here giving any more reasons to change. But if you need one watch this turtle mama.
Ok, ok statistics and preaching over. What we need to do is take personal responsibility and make changes now. I am going to share with you a few easy starters that I’ve found have worked to help you get started.
Step one is to fall in love with what you already have in your closet. Make a capsule wardrobe thatl works and go with it.
As you may have seen in a previous blog post I’ve been using the Cladwell app. You basically create your wardrobe from a combination of their items and uploading your own. From this is gives you a choice of daily outfits. Sign up to cladwell here. Use the code wolfatmydoor.
If you do need to buy something it has a great section to recommend what to buy to fit in with the clothes you already have. Over the last year I have strived to buy less and invested in pieces from quality and ethical brands such as People Tree. Their prices cost slightly more but it’s worth it. Their fair trade organic clothing is ethical and beautifully made and oh yeah it lasts.
After a month or two you have a good Marie Kondo style clear out. You are left with items you actually wear. Here are three easy things you can do with the clothes you decide to part with instead of filling landfill:
Sell good items on your local Facebook sites. Just click the marketplace button on the app and snap your clothes for some extra cash
Dye existing clothes to refresh them or create something new Dylon does an excellent washing machine dye in a pot with everything included
Ok so my favourite find this year is Who Gives a Crap toilet paper.
I love everything about them. They are wrapped in beautiful PAPER wrapping so zero plastic. They’re made of good stuff and they raise millions for Water Aid. Oh and you can subscribe to a delivery so you never run out. It comes in a big cardboard box so you need to store it. Buying like this saves money too and it’s cheaper then buying at the supermarket. Want more money off? Here’s a fiver to spend with them.
I also invested in a Tulip cup to stop using tampons and pads. Let me know if you are going to order as I have an offer for a free gift.
There’s loads of small things you can do like swapping from detergent to washing eggs. Get yourself some old fashioned washable handkerchiefs instead of using packet tissues. And lastly I’ve changed to bamboo toothbrushes to save on plastic. You can purchase them on amazon.
Food and Drink
Coffee cups have been hot in the press this week with a tax on disposable cups being introduced. You can pop into most bargain stores and grab a reusable cup to take out your coffee from kitchen to car. Even better invest in a slightly more fancy KeepCup cup. You can get a super fancy cup from them. You can even design your own and buy one of their reusable straws. If you sign up to an account you can get 15% off your first order with them by using the code uksubscribe15
Another tip for the kitchen is to start using glass and Silicone products. Jars are fab for storing stuff and free if you re use jars you get with other products. Silicone is great for all sorts of products such as baking tray liners to replace tinfoil.
Finally the war on supermarkets. First of all there’s some great ideas like having plastic free aisles. You can put pressure on supermarkets and the government by signing this petition.
Supermarkets are not doing enough. I got my Tesco delivery this week and asked for no bags. I ordered all loose fruit and veg to avoid all the plastic. I also love their paper veg bags as they fit the compost bin perfectly. I was so frustrated to find the entire order full of those tiny plastic bags you get on the produce aisles! They’re so tiny and thin they’re not even reusable. Come on Tesco use your brain, no bags means NO BAGS. I just found out that my local farmers market is very local so I’m turning off my delivery subscription and changing my shop, sorry Tesco.
So that’s where I’m up to with my own war. Next on the list are:
Shopping bags and making my own cloth bags for veg items.🥕🍅🥑
Beauty products – recommendations please 💄💋
Medications – this really bothers me as it creates a ton of waste each month. I don’t have a solution do you?💊💊💊
Nespresso pods – I am a Nespresso junkie. They get me through the day but the waste is bothersome. Nespresso recycle their own pods but I don’t often get them as they are so expensive. Anyone got any ideas on other brand pods?☕️☕️
I hope you enjoyed reading my guide. Please remember to say hello and share your war on waste ideas below.
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.