Spoonie Solutions

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

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

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

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

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

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

Look forward to hearing from you…

Learning about Chronic Illness and Autoimmune Disease

About a week ago a book caught my eye: The Autoimmune Wellness Handbook by Mickey Trescott and Angie Alt

For those of you that have been following my journey recently you will know that due to multiple chronic illnesses I have taken a year or so out to live slow and heal. During this time there have been lots of battles in my brain to do with acceptance and grieving for a life lost (My post about diagnosis can be read here). So when I stumbled across the Autoimmune Wellness podcast I was already in. I love a good podcast as they save me when I have painsomnia or on the days I’m too ill to read and sick of screens. In podcast one Mickey and Angie spoke about their own journey and reason behind the book  so I ordered myself a used copy on Amazon. Let my investigation into my body and its quirks begin. I have a very lov/ hate dialogue with my body and chronic illness and for once I feel I may have the space to address this.


To be honest I am a little sceptical. The amount of ‘cures’ thrown at people with Autoimmune and invisible illnesses are huge. Everyone has a method or a miracle cure or the handy advice of ‘exercise more’ or ‘eat better’. What appealed to me here is the fact it’s a DIY guide and not a manual. Not ‘here’s what works’ but a try this journey and see what works for you. Anything I can adapt works for me and they have podcasts and Instagra. Sign me up, I’m a social media sucker!


So the book arrived and it has a pretty cover so I like that ✔️

Then a friendly story about the authors, another  ✔️ for me. 

It explains how it works in simple terms ✔️. 

Then my fave bit, a checklist quiz all about where you are on the spectrum of Autoimmune, I loved this ✔️✔️✔️.


Then I made the big bad mistake of skipping through the book to the section on food. I knew I’d panic when I saw the elimination diet but OMG it’s epic. It literally excludes everything I like. Bad me, I shouldnt have done this but I did. The pleasure of food and eating is one of the things I feel I have left, and the thought of a strict regime makes me panic a little inside. Even if it made my illness manageble I’m so stubborn and I love caffiene, cake and cheese!

 

Even though I don’t think I’ll manage this saintly diet I’m going to stick with the book for now. Those who know me well will know I’m a typical Gemini who follows the next shiny thing so this may be a short lived project. But my intent is to work slowly through the process and get to the diet when I’m ready and less resistent. It’s worth a shot no?

I’ve recently realised that I dont have to be the best at everything, I don’t have to do everything perfectly. I can start things and even if I dont do them to the letter I can extract some good from them. For example I did a smartphone detox a while back and I’m far from saintly, still addicted, but I no longer have notifications on, deleted the Facebook app and am able to  put it down. 3 good things came of that so thats success not failure right?
I’m going to attempt to blog my journey with this tis book so welcome to the adventrue be it long or short…

Walking

The trouble with walking so far is getting back.

Every gate I open has to be closed in case I set the beasts free.

Every footprint retrod in a different way.

All the effort with none of the anticipation.

A glance to check only my shadow follows.

The world is big and I am small.

The day has turned tail with me.

I’m back to the safe and known,

I’m back to something new and unknown.

Bubble

When I started to write a post about mental health the other day I deviated. I was supposed to write about mental health in general and ended up just pouring my heart onto the page. So back to the original post…

I have many wonderful and talented friends who my life crosses with for fun, creatively and also with work. A few years ago a former student of mine introduced me to Katie, as we both had Lupus in common (I guess the disease is good for something). Immediately we got it, the whole chronic illness thing and everything that comes with it. To make it even better she’s a fellow creative soul.

We collaborated a few times in our quest for invisible illness advocacy and creative therapy. Over the past year Katie has been away studying for her screen writing  MA. We’ve missed having her around but the best thing is that she’s been growing her amazing talent. I know it’s not been easy with battling the daily illness thing and the lack of support she’s had. That just makes it more inspirational that she wrote and directed an amazing short film, Bubble.

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In Bubble we meet Erica and Paul, a couple struggling. ‘Erica’s desperate to burst Paul out of his depression, but on the first day he takes medication, she pushes too hard.’ The film is not really about the depression or how it manifests. It is about a couple and how their relationship copes with the the effects of depression.

Katie explains:

‘The representation of Depression in modern media is so often the sad person, who takes medication, and is sad. The human experience of a mental health problem, for both the sufferer and loved ones observing, is much more complex.

When spending long periods of time with a loved one experiencing Depression, I realised I had no idea how to help, or how to act around him when a black mood descended. I realised I was making things worse, but had no guidance on how else to be. It was then that I realised that there are no examples of stories or films that I knew of which exemplified what I should or could do for my loved one who was suffering so clearly but so internally.

Bubble endeavours to be one such example.’

I knew a little about what had inspired her and she told me a little more :

‘Two things really. Firstly I watched other short films and wanted to have a go to see what I could manage. And secondly I struggled to know how I could help friends  with their depression, so wanted to explore that.’

The film is a snapshot into understanding mental health from all angles. It cleverly puts emphasis on the couple rather than the illness. I think this comes from Katie’s innate understanding of invisible illnesses of all kind. After all we all live with, and experience the the illness someone has when we are close and care. We all learn to cope with it and don’t always get everything right. Invisible illness needs to be talked about, accepted and challenged.

Ohh and I almost forget to mention it, Bubble is up for an award. It’s part of the  Nottingham International Microfilm Festival Audience Award. You can watch and vote for it here:

We could all be a little kinder…

I came across this list earlier on Buzzfeed

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I love the fact it just asks us to spend a little time on ourselves before we hit crisis. I wish I could take my own advice. Slowly, slowly I’m changing my routine to include breathing and positivity. Todays tasks were to make candles, get the dogs back and watch Bake Off. Tick, tick and almost tick (it’s on in 10 minutes).

A lot of chronic illness comes with a spoonful of guilt. We let so many other areas of our lives slip so therefore believe we don’t deserve self care and kindness if we have cancelled a meeting or been late on an assignment. I know I’ve posted this before but it is so true: You can’t pour from an empty cup. Take care of yourself first.

So I’d be interested to know what you do to take care of yourself?

P.S. Today I’m grateful for:

  1. The garden and it’s ability to keep on growing no matter what
  2. Rose – In plant form, scent or lemonade.
  3. The crisis team who are keeping me afloat

 

 

 

Let’s Pretend…

Do you ever think we are just playing at life? Being different characters in some elaborate story?

I don’t really know where I’m going with this post because it’s mostly rambling thoughts! Maybe it’s being in theatre that I always see people as playing parts in their everyday life. Of course there’s  Shakespeare’s famous passage from As You Like It...

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And one man in his time plays many parts, His acts being seven ages. At first, the infant, Mewling and puking in the nurse’s arms.

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It hints that our lives are predestined, and in terms of ageing they are I guess. But when do we become these stereotypes and copies of our own parents? Just now I overheard my sister’s husband asking her ‘did you find the gravy boat?’. It made me smile, I wonder if he rewound ten years to uni he’d imagine ever uttering this phrase? Then I realised I don’t have a gravy boat, does that mean I’m not an adult yet!?

If we are characters can we choose the parts we play or the dialogues we speak, or do we say certain phrases just 4d2eef3c2201ad1d82e0ce3043a006c8to conform? This is partially true with the relationships we have with others. I’m a people watcher and listener and love to eavesdrop. Over the past few weeks I’ve had 3 hospital visits in which there has been an enormous amount of time to observe. It’s interesting watching the dialogue between patients and health professionals. Sometimes it seemed as though they’re having two entirely different conversations. The doctors hone in and focus on individual areas of the body or conditions. They narrow down and diagnose and defend their decisions from the get go. Maybe this is because the NHS has a focus on cuts and blame and its created fear and narrow practice? But what these conversations do are damaging, they create a dialogue in which the patient feels it’s their right to be healed and the doctor is constantly defending the attack. Neither lead to comfort or healing or 4db5a8f3a5b0b85573115a9dc7cfdd59treating someone as a human. Whilst watching I almost wanted to jump in and direct them like actors to resolve the conflict. It’s even more scary when you find yourself in the same conversations despite having seen them happen five minutes before and promising you wouldn’t. The way we are spoken to lures us in without realising and takes real effort to remove ourselves..

If we can change our dialogues can we then we change our relationships and outcomes? I’m a great believer in the fact we cant change others, only ourselves. Sometimes its good to examine how we speak 39a826434d0482e19e4b342e6b265ec9with others and shift our relationships to something that works better.

More importantly, I think,  it’s how we speak to ourselves that seems so vital. Our inner dialogue is with us every second of the day so if it’s in conflict or defensive it leads us to dangerous places. CBT has helped me recognise this and although its not an instant cure it makes us aware of catching those thoughts that are damaging. Also being able to see the positive lifts changes our gear and puts us in a better place.

Positive thinking is not an easy task to do, especially when drowning in negative thoughts. But the rule of attraction is strong and we can 0ae880eb77832884e8a19c3e3f357953certainly influence our paths by changing our thinking patterns. I love trying exercises and activities that help with this. I like Tiny Buddha’s 10 Tips to Overcome Negative Thoughts

Then there are the times that everything seems totally out of our control. I often wonder about things being predestined. My life has been a roller
coaster of events and emotions. Without being dramatic I’m sure that I’ve endured more than the average person. Sometimes I find myself wondering if it’s something written out for me or some kind of karma. These thoughts happen 81576b699d8a8a514f8f9c01113dfb10especially when I’m down on myself. I genuinely believed that I had a Christmas curse in the past. Just ask anyone who knows me well and they’ll confirm it.

e5c9e117e8a4050b05a4c1d031710423Since being really young I also used to fantasise about being part of a conspiracy. I used to lie on my back and l9979724392b6d1da5b80638e18b720c4ook into the blue sky. Somehow looking into the brightness meant that I could see these little circles that I assume were the shape
of my pupil and iris. In my head they were eyes of bigger beings watching me, not threateningly but there watching my life go by or having a say. I know this sounds a little odd but I guess it’s part of figuring out the world. When years later I finally saw the Truman Show it played on my mind for years days. Even now I get flashes of thinking I’m being watched or there’s cameras everywhere. I did giggle when I discovered it was an actual condition. Not that I need another diagnosis but I’m sure I’m borderline Truman Syndrome

So in conclusion its seems like some of life we can control and other things happen and we can choose how to react. I’m not sure if any is predestined but I can’t think of a better way to say how to manage it than this:

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Parenting Yourself

So the last few weeks have been living in crisis. Caused by pain, mental health, relationships, work and income. All at once, in one big lump. Pow, taken out by the world!

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3 emergency hospital trips, 1 breakdown, 1 job lost, 1 relationship ended… It’s so easy to get swallowed into the negative and not see the positive. But the positive moments have been about the friends I have and love dearly.

What it has done is made for a very interesting discussions about life. It’s been useful to surround myself wth my friends and those who have been in the same place.

Today’s post is dedicated to Helen who has been amazing. Having been through the same shit she’s been one of the most resilient people I know. Oh and she’s a reflexologist too. I cannot recommend her enough for any kind of healing!

12068846_939860746086783_403464652320274183_oHer Facebook is here, and website is here

A few of her wise words include:

“So the world currently feels like a very scary, lonely & overwhelming place yeah. It’s all shit, there’s no-one you can rely on and you’ve just not got any more energy to keep fighting it all 😭

I’m not in your head but I can recognise it: I mean, when even your own fucking body seems to hate you what’s the point eh FFS!

But there is a point. It’s horrific right now & you prob can’t see any light.  Let me reassure you, there is a light. It’s called resilience, a strength you didn’t know you had, friends & vague contacts that will step up & help you find a path where you didn’t know there was one. It’s chaos, but out of the storm there’s new horizons, ones you’d never dreamt of before.

I’m not saying it’s easy, that’d be a lie. Trust me Vicki, it’s an ending but also a new beginning. It hurts like fuck. That hurt eventually turns into the determination your new self will rely on. Among my closest friends we no longer call it a ‘breakdown’ but a ‘breakthrough’ because in order to be true to ourselves the pain has to be faced & the old patterns need to be broken.

People don’t understand what it’s like living in pain every damn day. For doing that in itself , AND continuing to work as long as you have, you have a strength that most do not. Be proud you’ve made it this far. And with or without a bloke, your journey is only just beginning.”

These words were my solace in my darkest moment. They became a mantra to cling to. I love the idea that when in crisis experiencing a breakthrough rather than a breakdown. Maybe my list should look like this:

3 emergency hospital trips signs that I need to ask for help with my conditions, 1 breakdown breakthrough, 1 job lost assessment of my career, 1 relationship ended  6 close friendships formed and countless true friendships beginning … It’s so easy to get swallowed into the negative and not see the positive. But the positive moments have been about the friends I have and love dearly.

Today in our feet pampering session we discussed parenting. She suggested writing down all the things we want from our parents (theoretical ones if you are reading this mum and dad). Then you cross out parents and make it a list for how you want to treat your self. So here is goes…

I want my parents to be I want myself to be:

  • Supportive
  • Non judgemental
  • Not to know best for me but accept I know this
  • Kind
  • To listen without an answer
  • At the end of the phone
  • Strong
  • Not pull me into their dramas!
  • Not to take on my illness as something they’ve done or passed on
  • Trust me

Well that was a lot of writing and self led therapy for one day, I’m off to bake a cake!

Digital Life | A Guide to Healthy Apps

I spend A LOT of time connected to devices. In fact I’m rarely disconnected and even find it hard to sleep at night without a film or podcast on. I always want to do a bit of a digital detox but fail miserably. Looking at it in a different way though there are lots of apps, and games out there that are amazing. I thought I’d share my faves:

Pacifica | A CBT app for catching those thoughts

slides-moodWhat They Say:

MANAGE STRESS. LIVE HAPPIER. Daily tools for stress and anxiety alongside a supportive community. Based on Cognitive Behavioral Therapy & Meditation.Learn to identify and correct distorted thinking patterns.

What I think:

Pros: This is the most user-friendly and easy to use CBT app I have come across. Having explored CBT in ‘real life’ I have found it easy to continue to use these techniques within this app. My favourite bit is the Thought Tracker which enables you to capture your thoughts, then explore behaviours such as ‘fortune telling’ or ‘mind-reading’ (two of my habits). It then gives you the chance to turn these thoughts around to balance them. It also has a voice recording capability which I haven’t yet tried out.

Cons: I’m not sure how this would be for someone who was completely new to CBT. I love it because I understand all the terms. I also feel the loss of someone human or a trained professional to guide you. They often will pick up on issues within your responses to thoughts and catch those places where you are still being negative. It’s a useful tool but not a replacement for real therapy.

Breathe | Mindfulness with achievement badges

What they say:

GET MEDITATING IN 5 MINUTES. EASY.With this app, you can develop and apply kindness and compassion in your daily life through a process called STOP, BREATHE & THINK.

STOP | Stop what you are doing. Check in with what you are thinking, and how you are feeling.

BREATHE | Practice mindful breathing to create space between your thoughts, emotions and reactions.

THINK | Learn to broaden your perspective and strengthen your force field of peace and calm by practicing one of the meditations.top-slide-1536.png

What I think:

Pros: I loved this app instantly on appearance and for the ease of use. The best thing is closing your eyes for ten seconds and scanning your body and mind. It then recommends you different meditations depending on your current metal and physical state. I also love the badges as rewards and have even woken up early to get the early bird one.

Cons: My only issue is that I seem to get the same meditations all the time which gets repetitive and puts me off.

Never Alone | Truly demonstrating the potential of games to create learning 

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What they say:

Never Alone (Kisima Ingitchuna) is the first game developed in collaboration with the Iñupiat, an Alaska Native people. Nearly 40 Alaska Native elders, storytellers and community members contributed to the development of the game. Play as a young Iñupiat girl and an arctic fox as they set out to find the source of the eternal blizzard which threatens the survival of everything they have ever known.

What I think:

This game is utterly beautiful. It demonstrates the power and potential that video games have as an interactive learning tool. The storytelling is powerful, the game is absorbing and there’s a documentary thrown in there too. So far I haven’t found a con!

I’m also glad that the world is waking up to the potential of video games. They are not all unsociable and violent, but provide a creative and interactive platform for learning. TED talks have plenty of debate on this here.

My Pain Diary| a comprehensive diary to keep track of chronic illness

mpdiconWhat they say: CHRONIC PAIN & SYMPTOM TRACKER. Track one or more chronic pain conditions and keep your entries organized with Color Flags.

What I think:

Pros: This is a nice app with lots of detail. You first of all identify the type of pain or condition you have then add details. This includes adding photos, triggers, symptoms and even the weather. It’s helpful for me because you can download a report to take to the doctors or rheumatologist.

Cons: It takes quite a while to set up all the tabs for different conditions and options.

Daily Yoga | Easy to follow, high quality yoga routines

part2-bg.pngWhat they say:

The world’s most dedicated yoga app – fitness on the go!

What I think:

Pros: The routines are easy to follow with both written, spoken and image based instructions. Theres a wide variety of routines even on the free app.

Cons: If your workout gets interrupted mid session, for example a low battery, I cannot see a way to restart where you left off.

 

Headspace | Techniques and meditations to heal the soul 

What they say:

GET SOME HEADSPACE | Headspace is meditation made simple. Learn online, when you want, wherever you are, in just 10 minutes a day.

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What I think:

Pros: Like Breathe this is another great looking app with lovely design. The 10 day plan is easy to follow and a good starting point. Theres lots on the app in the free version to keep you going for a while. I like the fact you can link up with friends as this motivates me.

dfulnessCons: I got a bit bored after a while and felt reluctant to pay for it when there other free trials around. As a general point I love practicing mindfulness but find it difficult to concentrate when very anxious.

So these are my 5 apps or games. Please comment below with ones you love…

It’s funny when things crop up…

… just as you needed them.

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https://www.behance.net/gallery/Hunger-is-a-monster/12330761

I’m having a terrible time mentally, physically and emotionally at the moment. I just don’t seem to be able to hold things together.

It’s having a real impact on every area of my life including work, income and relationships.

Never has the autoimmune community of various groups meant so much. Just hearing and chatting with others in the same place is so important.

For those who are looking for support or like minded people here are some links:

Spoons and hugs x