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…

Creating a bedtime routine

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

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

Medication

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

Undisturbed sleep

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

Waking up

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

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

Making your own personalised routine

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

10.30 pm

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

10pm

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

9.30pm

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

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

8.30pm

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

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

People are rubbish. A guide to reducing personal waste.

We really are, we create nothing but waste. First of all pop over to People are Rubbish on Instagram to see just how bad we are! Rubbish tells a story, one in which we are the villains…

Last year I began ‘slow living’ with the goal of simplifying life, buying less and better quality. As an extension of this I began a personal war on waste. Then just before the new year the BBC’s series Blue Planet was released and the fish swimming in our plastic waste broke our hearts. If you missed it you should watch it here.

It is very clear we have to make a change to the way in which we live and consume. When even a Tory PM declares a need for drastic change on an environmental issue there must be a crisis. “May’s speech, unveiling a much-heralded 25-year plan for the environment in England drawn up by Michael Gove’s environment department with input from pressure groups, focused heavily on plastic waste, which she called “one of the great environmental scourges of our time”. https://www.theguardian.com/environment/2018/jan/10/theresa-may-proposes-plastic-free-supermarket-aisles-in-green-strategy

I don’t want to waste time here giving any more reasons to change. But if you need one watch this turtle mama.

Ok, ok statistics and preaching over. What we need to do is take personal responsibility and make changes now. I am going to share with you a few easy starters that I’ve found have worked to help you get started.

Clothing

Step one is to fall in love with what you already have in your closet. Make a capsule wardrobe thatl works and go with it.

As you may have seen in a previous blog post I’ve been using the Cladwell app. You basically create your wardrobe from a combination of their items and uploading your own. From this is gives you a choice of daily outfits. Sign up to cladwell here. Use the code wolfatmydoor.

If you do need to buy something it has a great section to recommend what to buy to fit in with the clothes you already have. Over the last year I have strived to buy less and invested in pieces from quality and ethical brands such as People Tree. Their prices cost slightly more but it’s worth it. Their fair trade organic clothing is ethical and beautifully made and oh yeah it lasts.

After a month or two you have a good Marie Kondo style clear out. You are left with items you actually wear. Here are three easy things you can do with the clothes you decide to part with instead of filling landfill:

  • Sell good items on your local Facebook sites. Just click the marketplace button on the app and snap your clothes for some extra cash
  • Dye existing clothes to refresh them or create something new Dylon does an excellent washing machine dye in a pot with everything included
  • Use the fabrics to create something new. I’ve cut up t-shirts to make macrame plant hangers or draft excluders. Check out my Pinterest board for ideas

Personal care

Ok so my favourite find this year is Who Gives a Crap toilet paper.

I love everything about them. They are wrapped in beautiful PAPER wrapping so zero plastic. They’re made of good stuff and they raise millions for Water Aid. Oh and you can subscribe to a delivery so you never run out. It comes in a big cardboard box so you need to store it. Buying like this saves money too and it’s cheaper then buying at the supermarket. Want more money off? Here’s a fiver to spend with them.

I also invested in a Tulip cup to stop using tampons and pads. Let me know if you are going to order as I have an offer for a free gift.

There’s loads of small things you can do like swapping from detergent to washing eggs. Get yourself some old fashioned washable handkerchiefs instead of using packet tissues. And lastly I’ve changed to bamboo toothbrushes to save on plastic. You can purchase them on amazon.

Food and Drink

Coffee cups have been hot in the press this week with a tax on disposable cups being introduced. You can pop into most bargain stores and grab a reusable cup to take out your coffee from kitchen to car. Even better invest in a slightly more fancy KeepCup cup. You can get a super fancy cup from them. You can even design your own and buy one of their reusable straws. If you sign up to an account you can get 15% off your first order with them by using the code uksubscribe15

Another tip for the kitchen is to start using glass and Silicone products. Jars are fab for storing stuff and free if you re use jars you get with other products. Silicone is great for all sorts of products such as baking tray liners to replace tinfoil.

Finally the war on supermarkets. First of all there’s some great ideas like having plastic free aisles. You can put pressure on supermarkets and the government by signing this petition.

Supermarkets are not doing enough. I got my Tesco delivery this week and asked for no bags. I ordered all loose fruit and veg to avoid all the plastic. I also love their paper veg bags as they fit the compost bin perfectly. I was so frustrated to find the entire order full of those tiny plastic bags you get on the produce aisles! They’re so tiny and thin they’re not even reusable. Come on Tesco use your brain, no bags means NO BAGS. I just found out that my local farmers market is very local so I’m turning off my delivery subscription and changing my shop, sorry Tesco.

So that’s where I’m up to with my own war. Next on the list are:

  1. Shopping bags and making my own cloth bags for veg items.🥕🍅🥑
  2. Beauty products – recommendations please 💄💋
  3. Medications – this really bothers me as it creates a ton of waste each month. I don’t have a solution do you?💊💊💊
  4. Nespresso pods – I am a Nespresso junkie. They get me through the day but the waste is bothersome. Nespresso recycle their own pods but I don’t often get them as they are so expensive. Anyone got any ideas on other brand pods?☕️☕️

I hope you enjoyed reading my guide. Please remember to say hello and share your war on waste ideas below.

To find out more on reducing waste visit http://www.goingzerowaste.com

All opinions are my own. None of these are paid recommendations but genuine reviews with money off, where I could find it, to help you out.

How to find joy

  1. Walk with a dog, more people talk to you than if you walk alone
  2. Use the ‘golden hour’ to take a photo and marvel at your skills 
  3. Wake up just to see the sun rise and do step two. You’re allowed to go back to 
  4. Laugh really really hard till it hurts. Friends and YouTube videos help
  5. Make someone cake for no reason and share their joy 
  6. Show a child ‘wonder’ and watch their joy, it’s infectious 
  7. For slow burning joy plant some seeds and feel joyful each time you see them grow a little bigger, and think ‘I made that happen’ 
  8. Light a fire, indoors or out, and spend time roasting parts of your body till they go red. Decide it’s probably bad for you so sit and stare and getting lost in the flames 
  9. Eat cheese and don’t feel bad
  10. Climb as high as you can to get a really good view

Somedays

Somedays the world is an ugly place. I know this morning was not helped by the anxiety of returning to England and the early start. Maybe I wore the wrong eyes for viewing it? It was a catalogue of bad sights, smells and tastes.

It started with my bag (too heavy) and a very fast bus ride through Barcelona’s packed streets (the driver was a the love child of Jesus and Otto Mann). Add a dash of concrete pounding and avoiding last night’s dried vomit slicks (the pigeons were enjoying it). Finally to the bus,  despite there being 3 staff, they watched and tutted as both me and my sister (both disabled) couldn’t get my bags in. My hands, which shake all the time now, couldn’t grasp the thin paper ticket (don’t cry).

In the airport I waited by the mobility help kiosk (noted there are no chairs). I watched a man vomiting into a bin for 10 minutes before the cheery Xavi picked me up in a wheelchair (I always book ahead now for mobility and I always ask the name of the person assisting me). When you get assistance at airport you end up in all sorts of corridors and pens waiting, seeing behind the scenes. Once over the embarrassment ( I still get weirded out by crutches and wheelchairs) you get taken in buggies and strange contraptions to get you on the plane. You forget all the normal airport stuff but find yourself saying ‘thank you’ and ‘sorry’ a lot.

I watched amused as the people fight to get ahead in the plane queue. Almost slinking up the walls to get closer to the front. Then our gate changed and everyone made a mad dash across the concourse. The shoal was so choreographed any dancer in a ensemble would be envious. I trailed behind with the cabin crew, no rush, after all we’re all getting on exactly the same plane and our seats are already allocated. The dance continues as people who pay extra can get to the front of the same queue and other frantically sort through bags after bring too many or ones too large. The panic continues on the plane like a game of musical chairs. Last one seated is off,  I guess that’ll be me then (jokes).

Now travelling does something to my head, it makes me time travel to the past or future. I’m terrible at it. I fret and tremble recalling past pains. I nauseate over details of conversations not yet had. I caught myself in the moment of full anxiety (I’m good at catching thoughts by now). I realised what I was doing and I can only describe it as running down a dark alley with doors that open to the past and the future. You witness times of joy and pain and live events that haven’t happened yet (and probably never will). The alley narrows and it gets harder and harder to turn back. As you are squeezed between the ever narrowing walls you realise you’re stuck. It’s so tight and dark you can only see and believe what your brain is showing you. I held back the tears and swallowed the anger. I realised my brain was back in the place of no hope.

By the time I was in my plane seat I’d died a dozen times in my head. To write it down seems ridiculous. As I was drawn back into the real world again I became aware of a boy behind me. He was possibly 8 and making some curious noises. A sort of cry mixed with excitement then outbursts of ‘the plane is going to go. Suddenly the couple behind the family announced the wanted to be moved. This was loud enough for most of the plane to hear. Most people politely stayed looking at their phones but I’m not very good at that. I swivelled round to see a family with children of different ages. This boy clearly had learning difficulties and was anxious at flying. It came out of him in little bursts like he didn’t know whether this was a terrifying place or the most thrilling ride. He hadn’t done anything wrong, he just said out loud the feelings that we probably all were thinking. I watched as the boy’s mother turned in natural defence of her child. ‘Are you asking to move because of my son?’ she asked half vicious in defence and half shocked beyond belief. ‘Yes’ the couple announced to the plane, ‘we are moving because of your son.’ Every part of me wanted to jump in fierce and wild to stop the pain.

I bit my tongue and caught the mum’s eye, I offered her my row of seats in front away from the couple. The cabin crew swept in and expertly moved the couple away to the back of the plane. The mother burst in to tears. The cabin crew tried to placate them both by offering sweets and a ‘trip to the flight deck’. These frantic gestures were lost so they listened whilst the family explained that the couple had been discriminatory and said appalling things about their son. I felt for the mother in that moment, she had tried desperately to shield her child from the horrible hatred. She was in a state of pure panic. How could anyone do this just because the child made a sound or spoke in a way that is ‘abnormal’ (I personally found him a joy)? Later in the journey I turned and caught the mother’s eye. I wanted to say how appalled I was but just mouthed ‘are you ok?’. She whispered back a thank you and smiled. I didn’t want to save her, but just let her know she wasn’t alone and others were with her.

When you enter the world slightly outside of the normal realm you see how difficult and unforgiving the world can be. My sister has talked at length on her blog about grieving (it’s worth a read and is here ). Its not always about the death of a person but sometimes the death of something else, like your expectations or the life you thought you had. I know I have been experiencing extreme grief as part of my relationship breakdown. With this has come a whole lot more. I’ve experienced the death of my life as I know it. I am unable to work, looking at a future on benefits and no longer able to do all the things I once could. Auto Immune has irreparably robbed my life and I sometimes grieve for what I once had.

So forgive me if I get sad from time to time. I’m trying more than you know to keep my shit together. In amongst these moments I cling on to the small acts of kindness we are all capable of performing. Smile at a stranger or ask someones name, it costs nothing but a little bravery. None of us know what path the other is treading, what came before and is to come in the future. Maybe the couple who had asked to move had been anxious flyers or something else had happened that day. Their actions weren’t the best way of behaving, but we all make mistakes right?

I will continue to fight tis anxiety daemon, its not a linear journey and I’ll bounce around. I’ll also continue to to fight the prejudice and invisible illness in the best way I can, with compassion and kindness. I’m back to start all over again.

I saw this today, which says a lot of my ramblings far more succinctly.

Love, and kindness to you all with the most open of hearts.

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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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On the road…

…to I don’t know where. Wandering with out purpose is thrilling, terrifying and alien. I tend to be someone who need goals and aspirations.

So as a friend said today, you’re just at the point of hitting the reset button. It’s time to start again. So I’m ‘getting my ducks in a row’ and beginning a new journey.

I love words and collect them on my Pinterest board. Today I took a little peek back at a few to inspire this little journey of mine: