If you have never heard of this strangely named festival, or know it intimately there’s is so much joy attached to welcoming the end of the bleakness of January and the beginning of Spring. Imbolc marks the mid point between the Winter Solstice (the darkest day) and the Spring Equinox (when the night and day are even). Just marking the shift in light can bring so much joy. The world outside is beginning to show the first signs of Spring with bulbs peeping above ground and scatterings of Snowdrops. It is celebrated on the 1st of February, some begin the celebrations on the sunset of 31st January and other on the 1st to the 2nd of February. Others choose to be more fluid and go with the weather and seasonal shift. A good marker is when the first lambs re born announcing the true arrival of Spring. I love the fluidity approach as a spoonie so that I can pace myself and enjoy celebrations for longer
The First Spring Snowdrops
Roots
In Ireland Imbolc is known as (Saint) Brigid’s Day. Brigid is the Pagan Goddess of Spring, fertility, healing, poetry and blacksmiths! She was later adopted by Christians and the day became a saints day. Some people believe that she was the goddess of healing and her two sisters were goddesses of smithing and poetry and they are combined as a Triple Deity (three gods worshipped as one). It is closely flowed by Candlemas/ The Wives’ Feast on the 2nd and to my joy is a gatherbing of women to feast and celebrate the home.
In traditional celebrations people make Brigid’s Crosses or Dolls woven from rushes. These crosses are not Christian and far outdate their use and symbolism. I’ve hugely enjoyed picking rushes and making them in the past. If you fancy a go there is an excellent tutorial here:
As it is the beginning of Spring I have some Spoonie friendly activities to celebrate and welcome in the new season over the next two weeks.`
Bulbs
One of my favourite things, after the evergreens of Yule and Christmas have gone, is to bring more nature indoors. One of the easiest ways of doing this is to force spring bulbs in pots and containers. Bulbs that are suited to this are Amaryllis (some will still be available), Hyaicynths (grape and regular*), Tulips, Daffodils, Iris, Lily of the Valley*, Crocus, Snowdrops and Paper-whites. Some bulbs can be found ready planted in lovely containers in garden centres and supermarkets. Alternatively you can buy them buy them and plant them in your own containers. My home is full of bulbs in purpose made bowls, tea cups and jugs, large jars etc. Pop a few stones in the bottom for drainage and then a layer of soil. Plant the bulb so the top is peeking out. You can cover the surface with moss for extra decoration. Keep it watered and marvel at how quick;y they appear. Once they have flowered you can cut the stem and keep them on the window sill, or outside and keep them for next year. They can be planted outside where they will bloom naturally next year. Or stored and saved once the green dies back and forced again next year. A more in depth tutorial by Sarah Raven can be found here.
Forced hyacinths in a copper bowl with tea and cake
Garden Plan
Planning my garden with my seed tin
Although the Spring bulbs outdoors are beginning to show signs of growth many will not be in flower yet. Whilst the garden is waking up its a fantastic time to begin planning your year ahead. Here are some simple ideas to get you started:
Decide what you want from your garden this year. Do you want it to be somewhere that you can sit and relax in a beautiful surrounding? Do you want your garden to feed you? Do you want your garden to provide cut flowers? Is your garden a wildlife sanctuary? Or like me do you want it to be a mixture?
Begin saving egg boxes, toilet roll tubes and plastic trays as seed planters
Take stock of the plants you already have planted. A really useful way of managing these is using the RHS free garden calendar tool by registering for an account here. Identify and save your plants to ‘My Garden’. The tool then provides you with a basic monthly to do list for the year ahead.
Ask yourself does your garden work for you as a spoonie? I have to reign myself in with plans
Go through your seeds. Take stock of what seeds you already have and plan how and when to plant them. This is particularly important if you are sowing a vegetable garden. If you have an excess of seeds why not ask friends and family if they want to do a seed swap.
Take stock, can and repair any garden equipment and raised beds
if you are feeling creative have a go at drawing or painting a garden plan of your own
The important thing to remember here is not to do it all at once. do one of these tasks at a time. And if they are still big break them down further!
Bake with seeds
Finally a magical and enchanting way to celebrate the Spring goddess within you is to bake with some seeds. Seeds represent knew beginnings. Popular recipes include poppy seeds as the poppy flower symbolises birth and death, and the seeds inspiration and visions (think opium, though I’m only endorsing the regular edible ones here!). Here are three recipes I love:
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:
Mood
Energy
Motivation
Pain
Menstrual cycle
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:
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.
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.
Canterbury
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!
Image Description: A cluster of mushrooms growing in the leaves caught in the bow a tree in my local park gardens
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).
image description: a graphic titled 54321 grounding exercise. There are boxes for 5 things you see, 4 things you feel or touch, 3 things you hear, 2 things you smell, 1 thing you taste. Image by @Growtherapy
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.
Walking in my winter boots with my lilac walking stick in the Royal Botanical Gardens Edinburgh. I am standing on the edge of the path which is lined with moss. A vine of ivy is growing across the bed.
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..
Image description: The twisted dark trunk of a tree in the Westornbirt Arboretum is on fire with oranges and yellows that surround it. Underneath are the yellow and brown leaves already fallen and rotting.
Get Crafty
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.
Dried plants displayed on the walls at the The Ethicurean, Somerset
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).
Crafts don’t have to be challenging, there are so many crafts to try. If you would like to try some seasonal crafts out, Jen (Mum in The Mad House) has some brilliant tutorials on her blog. They are aimed at children and families but there are some crafts that this big kid will be trying too. I love the look of the Autumn Sun Catchers, Clay Ghost Tea-lights and Aunty Chris’ Yorkshire Parkin!
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
Life Hacks
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
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.
Image description: a square dish of apple, pear and cherry crumble sits with a jug of cream. the crumble is golden and the red fruit has bubbled up around the edges. There are handpicked Chrysanthemums from the garden in autumnal colours in a jar and on the table.
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.
Beginner Exercises
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.
The Wolf
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.
What’s your super power? Well I’ll tell you a story about mine…. A while ago my sister had a gene test come back as an abnormal mutation, and as soon as I heard this my brain jumped to the X-men who are all ‘mutants’ with super powers caused by mutated genes. I mentioned it to my doctors (not the x-men bit) at the Behcets Centre and they tested me and unsurprisingly it came back as positive too (TNFRSF1A variant R92Q incase your interested, it’s sometimes associated with TRAPS and MS neither of which I have). Since then we’ve been joking about what our super power may be, I have ask my doctors when the power is going to appear, we’re all still waiting patiently whilst they look bemused. But it has got me thinking about how recently people with disabilities have been represented as superheroes and what the impact of that is.
Image from http://superheroseries.co.uk/ who are ‘the UK’s one and only disability sports series for the Everyday Superhero!’
There’s been a big change in the way people with disabilities have been seen in recent years. The Paralympics in London 2012 showed us athletes who were able to do everything despite having faced illness, accidents or birth defects etc (see Channel 4’s Advert Meet the Super Humans, it still gives me all the feels). Even the popular tv chat show, The Last Leg, sprung up from the games with 2/3 of the hosts having prosthetics. It championed disability and difference through comedy and sport. It’s still broadcasting in the prime Friday night spot over 6 years on (though it has sadly has moved away from its original roots of disability visibility and rights). With its triumphant music, Public Enemy’s Harder Than You May Think, reporting of the games it thrust people with disability into the mainstream as Superhuman, the true X-men.
One of the show’s prominent features is its hashtag #isitok and is used to ask is it ok that… type questions about current issues. In the beginning these were disability related such as.
But here’s where I want to ask my own question. #isitok to be disabled and not be a superhuman? #isitok to sometimes be weak and fall apart? #isitok to just be a normal everyday person?
Am I a superhero or a super victim?
Being chronically ill means that I often find myself sometimes being a little bit super hero and sometimes being a little bit the victim, but mostly a real person thats none of these.
I am very aware that people think I’m always winging about being ill or broken or in pain and its true (theres another post coming on this soon). The fact that the constant pain is held in 90% of the time is a feat of superhuman strength that you don’t see. BUT there’s points at which I reach crisis and fall apart and these are my ‘victim’ moments. These points usually come at times when everything reaches a peak pain levels, or I have fought so hard with benefits and housing and come across another stumbling block. At these times everything falls apart and I don’t want to be strong. This is the time that people offer words of support and point out how string I am the rest of the time, how i’m superhuman.
Most of the words about being strong come from others as words of support. I completely hear when someone is saying you are so strong and it is a compliment. It does boost my self esteem because it acknowledges that 90% of the time that my mouth is shut and fighting the pain, or the loss of my life as I knew it. But I’m going to say this because its the truth, not because I want to offend people: at the same time as it being a compliment it is also a burden. I don’t want to always be the hero of this story.
Sometimes it would be nice to crumble and for that to be ok. To fall apart and someone else play the hero. Sometimes I’m tired beyond tired. The pain has worn me down to the point I can’t live with it anymore. The system of benefits has broken me and I don’t want to feel like a criminal for asking for help from the state that I’ve paid into my whole life so far. I don’t want to hear ‘stay strong’ when I can’t see an end to the housing crisis I’m in. I don’t want to hear this will change when 2 and a half years is my limit and I’m saying its gone on too long. I just want to fall apart and that be ok.
The pressure to perform
So I think you get that living with a disability isn’t fun and we to be honest we are not always feeling superhuman. We are ordinary people and like everyone some like playing sport and others don’t, a small minority will be athletes. The risk of presenting people as superhuman when they compete with a disability means that the rest of us that don’t are not doing enough to help ourselves. To be honest I hate playing sport, especially those played on the olympics (I do love watching them though). This is probably because I’ve been hyper-mobile my whole life and sport really hurts! But it’s just not in me to do it. Does that mean that I am a failure even at disability?
Invisible illness and sport
When I look at the Paralympics I do also want to ask is it also ok to ask why invisible disabilities are not included in the games? In fact we are rarely represented at all on screen or even as disabled people. How, with fatigue, can we train and practice to compete? How with joints that dislocate can we complete in running, leaping and jumping? How with fluid in our joints and excruciating pain can we whizz round a basketball court or hit a volley ball on the beach. I think all this highlights is that the disabled community itself still hasn’t accepted chronic illness and invisible illness fully. So I’ve asked myself what sport could we compete in? Where are the events for napping, getting dressed, walking the dog? Because sometimes just daily activity is our superhuman feat: that getting out of bed in the morning is like flying to the moon and back.
I’m going to finish this post with an anecdote from a close friend who has narcolepsy (she’d be my competitor on the napping event for sure). She once asked me ‘If you could lose your legs or have a chronic illness which would you choose?’ And my answer in a flash was lose my legs, and she said she had answered the same in a conversation with her husband. It in no way comes from a place of saying losing your legs isn’t life changing and devastating, because it is. But it comes from a place of certainty and being able to adapt. With losing my legs I would learn what I can and can’t do and work with this. My capability wouldn’t change so drastically from day to day, but be a constant thing I could learn around. It wouldn’t be easy but I’d still have my health and energy. I could work towards something like the Paralympics.
Syndromes like Narcolepsy, Behcets, Auto-immune, Fibromyalgia. Lupus, RA, EDS etc. don’t allow for this. They are tricky because its like flu everyday and its unpredictable. They rob your life in a different way. In addition to this the symptoms are often not seen by others so completely misunderstood. You don’t see that under my clothes my joints are hot, full of fluid and dislocating. That I have sores that burn and ache. That at the beginning of the day I can’t walk properly for 3 hours or that at the end I’m moaning in bed from pain of the day. That my biggest spend this Christmas was on eco incontinence pads. That the fear of running our of painkillers produces panic. That I’m tied to medication and its a constant worry. That my diagnosis is permanent, incurable and my life changed forever.
The Paralympics 2012 began to change the world’s view on disability and watching that superhuman advert still fills me with awe. But it is only the beginning. The fight doesn’t stop here. I know that I am not represented by these athletes but I know they’ve opened a gateway into acceptance. That those few people competing have changed the view on what disability means. But most importantly they’ve made disability visible. The next steps are to make ALL disability visible. But to do this in a way that recognises that superhuman means coping with the everyday. I got up and wrote today, no one will give me a medal for that. But I am happy that I’ve achieved this.
I am a superhero of napping, baking, gardening and making. My superpower is creativity. I’ve often been encouraged to apply for the Great British Bake Off but I know I couldn’t because of my disability. I was so encouraged to see Bryony this year compete and that her disability wasn’t drawn attention too, she was a competitor, that was it. I would love to work with producers to find a way for this dream to happen but I just don’t know how it would work.
I found my superpower because it is my everyday and my drive. Everyone has their own too you just have to dig to find it. I also know is it is ok to be strong and also sometimes weak. It is this that makes the best super hero story, the ones we love are the ones that are human and mess up. We are all super human, some are just a little more tired and achey, but we are just us.
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.
Weather Changes
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.
Auto Immune I remember my clinic lead, Professor Fortune, telling me that changes in season affect bodies on a cellular level and it seems there is some proof. The BBC has a couple of brilliant articles on this. The first looks at facts behind the myths such as:
Rain gives you rheumatism – the answer is maybe but theres no conclusive evidence, its more likely power of the mind.
Falling air pressure is a pain in the head – I’m migraine queen aka the human barometer so I swear this is true and one study from Japan seems to suggest its true
The second article is much more focused on an in depth study on how temperature change affects our genes and immunology. In brief an international team of researchers conducted a study, funded by the Wellcome Trust and the Juvenile Diabetes Research Foundation to look at how this happens. They “found genes involved with immunity – the body’s defence against infection – were more active in cold months. And while this helps fight off viruses such as flu, it may trigger or worsen conditions, such as arthritis, where the body attacks itself, they say.”
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.
Well I’ve attempted to write this a few times and failed. In the past I’ve been given labels and written about them. And in reality my diagnosis is still fluid and ongoing.
It’s mostly described as a list of symptoms with a few anecdotes/ short stories thrown in for goo measure. I’ll start all the way back in the beginning… take a deep breath and grab a comfy seat, it’s a long one.
The early days
When I was younger I used to have bouts of severe stomach aches, and vomiting. I remember my first one so clearly. As a birthday treat my mum and dad had taken me to London to see ‘Joseph and His Amazing Technicolour Dreamcoat’. Any 80s child, and closet Jason Donavon fan, will remember the song that was at number one for like forever (sorry if it’s now in your head t… any dream will do…). We were too late to see Jason but starring in it was Philip Schofield of the broom cupboard fame. If you’re too young to get the references then you really missed out. I vaguely remember the show and the t-shirt I got a treasured (until my sister pinched it and vommed all over it whilst travel sick). What really sticks out though is the insane stomach ache I had after the show. We had gone to get pizza and I spent the whole time in the toilet unable to hold anything down.
And so it continued from that point and happened anywhere and everywhere. Always coming on super fast and the most painful thing ever. All the attacks were attributed to an almost ten year grumbling appendix. In reality I think they were Abdominal Migrainesthat were mentioned at the time but not really explored. This was the appearance of my first condition, Chronic Migraine.
Head and occasional abdominal migraines are with me to this day. And no they are not just headaches but they are completely dibilitating and so painful you wonder whether you can cope (if someone gave you a shotgun you’d probably pull the trigger). I have ended up in hospital with mine and take meds daily to stop them.In the last 3 months I have had 5 major attacks each lasting from 7 to 24 hours. Sometimes they cluster and sometimes they don’t. They have a significant affect on my life as are so sudden and viscous. They stop me functioning completely. I’ve tried multiple medications including Propranolol (worked a little bit) and Pizotifen (worked a lot but caused massive weight gain) and my current medication Sodium Valproate ( I have it under review). I also find that sumatriptan is the best medication to use when they start. My latest one has lasted 6 days and although I’ve managed to carry on functioning throughout and stave off the big blow out. It’s been painful I’ve lost my appetite and sleep.
Teens
At 17 I had an enormous attack of stomach pain and migraine. I was supposed to be painting the set of a play and ended up rolling around on the floor cloth in agony, I saw the school nurse and begged to just go home. Looking back I was so used to self managing these attacks that I was convincing to others that I was better than I was. (I still do this now, so if you ever do see me asking for an ambulance, I really need it.) On this occasion the School Nurse must have got me a cab home or something. All I remember was the next couple of days wanting to die from the pain. At some point a GP came out to me and when I wouldn’t let her touch me because of the pain she told me I was being a silly little girl. She gave me pethidine and anti sickness and told me I’d sleep for ages then be ok. I woke up twenty minutes after she left and was back in exactly same pain and vomiting. Eventually I was only bringing up pure black liquid (sorry) and had a circular bruise on my forehead where I’d passed out on a bucket and was still being sick. Eventually another GP came and said it was classic appendicitis. I went off to hospital and had my appendix out.
As a side note, the not being believed by doctors, the self managing of the attacks, misdiagnoses. Plus falling behind at school and teachers thinking I didn’t care has had a huge affect on my mental health and self esteem. In particular feeling as though I had failed and feeling guilt for being ill, or though I was using it as an excuse, is still with me now and it hurts to write it. I remember one of the drama teachers, who was involved in the play I mentioned above, pulling me aside and asking me if I should be doing drama! All because I’d missed the play whilst in hospital and hadn’t finished the floor cloth I was writhing on. Despite getting an ‘a’ in that course, completing a degree, and running a successful theatre company for ten years, I still ask myself the same question and it cuts really deep.
After my appendectomy (still don’t know if it was appendicitis or migraine) at 17 I kept getting flu like symptoms. I had constant fatigue and joint pains. It went on for weeks and weeks, then into months. At the time it was attributed to a glandular fever like virus that my body couldn’t fight off. I dropped back a year in sixth form and began the pattern of doing things at my pace. I couldn’t focus in lessons and would fall asleep on my desk despite fighting it. Interestingly at a similar time my sister was diagnosed with Juvenille Arthritus, and what I didn’t know till later was my mum was diagnosed with Ankylosing Spondylitis. I think this episode was either my autoimmune trigger or the first signs of activity. Multiple blood tests at the time showed positive ANA and white blood cell activity but it was never explored further.
Also from about 15 years old I began to struggle with mental health. At this time it was suggested I had Anxiety and Depression. By the time I went to University at 19 this was really affecting my life and I asked for counselling etc from my GP. By the time I was in my 4th year of university I was having an extremely difficult time personally, with my degree and at home. All of these contributed to a series of severe panic attacks. These were medicated and I just got on with it.
University
Fast forward a couple of years and I wasn’t coping physically at all. Firstly I constantly had the flu and couldn’t function. I worked really hard and just found ways of coping with feeling so ill. I went to the doctors and was told I was ‘unlucky’ to have had flu nearly every month. This was the biggest insult and I just couldn’t cope. I couldn’t get a full time job but built up my self employed work. This meant I was self managing whatever was going on in my body. I could work around the illness by ploughing on with everything I had when in a good patch and hiding when I couldn’t. This managed everything on the surface but in reality I was chasing my own tail constantly. Friends and others constantly commented on how often I was ill, other less kind comments urged me to just suck it up and stop moaning. I remember having conversations with people saying I think I’m going mad but something in my body is really wrong. I still felt like a fraud and the burden of guilt.
In 2005 I began to get severe chest pains. They were so bad I couldn’t use my arms or breathe. The pain was unbearable. My first reaction was that there was something wrong with my heart so I went to my GP. They thought it was either muscular or even anxiety and sent me away with pain killers. But it kept happening in cycles and I could feel the attacks coming. I saw multiple physios who mostly made it worse through their exercises. Eventually I saw a brilliant physio who wrote back to my doctor. She had seen me for a long time and recognised a number of symptoms pointing to something more than a mechanical problem. My trigger points were wide spread and with the other symptoms she thought that maybe it was fibromyalgia. She wrote a long and thorough report for my GP that took into all my symptoms such as fatigue, confusion, dispraxia, flu like symtoms, migraine etc. I returned to my GP who called in a senior partner and they decided together that this was something more. For the very first time I was being listened to and this GP stayed with me through a lot of the next bits.
Adulting
So I finally got referred to a rheumatologist and felt like everything would finally into place. I was finally being listened to and it was recognised that something was wrong. Within seconds of the rheumatologist walking into the room I was crushed. Before even meeting me or talking to me he looked at one set of bloods and announced ‘it’s not lupus, it’s not RA’. Only then did he examine me or ask any questions. But he never really looked or listened. He avoided eye contact with me, choosing instead to stare into his computer screen. I can honestly say I’ve never met a colder or more inhuman person in my life. By the time he abruptly said ‘you can go now’ I was more confused than ever and in tears. I began to walk out as the nurse barked ‘go get your bloods’. ‘What bloods?’ I said as I broke down completely. Then she explained everything the doctor should have done, and that he was a good doctor despite his bedside manner. I don’t think he was a good doctor and triggered lots of mental health issues. Later I got a mystery letter in the post summoning me to a full upper body MRI and physio. Apparently all ordered by the rheumatologist, I didn’t have a clue what was going on. Nor did the physio it seems. I was dumped in a cubicle with a trainee who took one look at me and said ‘I can’t treat you you need someone more senior’. They’d be in contact, they weren’t.
The next letter I got was summoning me to hydrotherapy. Amazing I thought something practical I could do to help myself. But this was not the case either. The therapists didn’t know why I was there and asked which physio I’d seen, I never had had a proper appointment with any. So they offered me sessions which I tried. The result was cancelling after three seasons as I was in so much pain I couldn’t breathe, move or sleep. My GP wrote a letter of complaint, I was so let down and felt toutured by the treatement both physically and mentally. Again I thought I was going mad, but this time my GP was behind me and persisted. I finally had someone fighting my corner.
So letters of complaint were written and I chose my next rheumatologist at a different hospital. I decided to give it another go and this time couldn’t have been more different. He listened carefully to my history and family history. He said he thought something auto immune like was going on. The first thing he diagnosed me with, however, was Joint Hypermobility Syndrome. This explained a lot of the chest pains I’d been having, as well as other symptoms in most people hypermobility isn’t a problem but with overlapping symptoms it was reeking havoc with my joints, connective tissue and pain. I was finally referred to a specialist physio who confirmed all the previous physio I had received was more damaging than good. I still see her now and she is part of my ‘magic team’ of experts. Without all the sessions I’ve had with her, including ultrasounds and acupuncture, I wouldn’t be able to move half as well as I can today.
To be continued…
Lets rest here for now because I’m tired physically from writing this and mentally from going through it all. I hope this begins to explain to others the extent of what’s going on. But mostly its been a hugely useful process for me to go through it all chronologically and to realise why some of my behaviours and blocks towards the system are there.
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