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
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.`
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.
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:
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
And the world spun on and she disappeared in between the gaps. The mirror looked like another room, but as she stepped through there was no drama or magic. She just slipped, into another place between the glass and out of sight.
It wasn’t a sudden event but had been a gradual process of slipping and fading. She once had burnt brightly and fiercer. She once had maybe been liked or even loved (or maybe duped into believing so). But friends who declared allegiance grew tired of her melancholy and as the dramas faded away, they too stopped calling. They wouldn’t be there with their promises a second time round. Their false declarations of solidarity and support made it feel worse.
Life was old news, just like her. She was unable to move forward, no energy to write a new chapter. Her brightness and glow from inside dissolved. Whilst those around flourished and grew from strength to strength and she wilted. She became a nobodies somebody.
The world turned and as she did she slipped further into the shadows. Everything she’d achieved and earned burnt away as others shone so bright. The world had robbed her and left everyone else with something whilst she was nothing.
She can’t do this world. She’s too tired, too lonely, too weak envious, too much, in pain and doesn’t want to anymore. Fed up of pretending, enough was enough. That’s when she discovered that the no place was a real place. A chance to step away and begin from scratch. It was her story, owned by her and she held the pen. She could write something new in a way that was like no one else’s.
She held the pen and began to draw. The first thing she drew was a boat. Not grand, just a tiny vessel. Nothing more than a board bench and some oars. She climbed onboard and launched into the inky sea, and didn’t look behind even once.