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…

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Diagnosis Murder Part 1

Well I’ve attempted to write this a few times and failed. In the past I’ve been given labels and written about them. And in reality my diagnosis is still fluid and ongoing.

It’s mostly described as a list of symptoms with a few anecdotes/ short stories thrown in for goo measure. I’ll start all the way back in the beginning… take a deep breath and grab a comfy seat, it’s a long one.

The early days

When I was younger I used to have bouts of severe stomach aches, and vomiting. I remember my first one so clearly. As a birthday treat my mum and dad had taken me to London to see ‘Joseph and His Amazing Technicolour Dreamcoat’. Any 80s child, and closet Jason Donavon fan, will remember the song that was at number one for like forever (sorry if it’s now in your head t… any dream will do…). We were too late to see Jason but starring in it was Philip Schofield of the broom cupboard fame. If you’re too young to get the references then you really missed out. I vaguely remember the show and the t-shirt I got a treasured (until my sister pinched it and vommed all over it whilst travel sick). What really sticks out though is the insane stomach ache I had after the show. We had gone to get pizza and I spent the whole time in the toilet unable to hold anything down.

And so it continued from that point and happened anywhere and everywhere. Always coming on super fast and the most painful thing ever. All the attacks were attributed to an almost ten year grumbling appendix. In reality I think they were Abdominal Migrainesthat were mentioned at the time but not really explored. This was the appearance of my first condition, Chronic Migraine.

Head and occasional abdominal migraines are with me to this day. And no they are not just headaches but they are completely dibilitating and so painful you wonder whether you can cope (if someone gave you a shotgun you’d probably pull the trigger). I have ended up in hospital with mine and take meds daily to stop them. In the last 3 months I have had 5 major attacks each lasting from 7 to 24 hours. Sometimes they cluster and sometimes they don’t. They have a significant affect on my life as are so sudden and viscous. They stop me functioning completely. I’ve tried multiple medications including Propranolol (worked a little bit) and Pizotifen (worked a lot but caused massive weight gain) and my current medication Sodium Valproate ( I have it under review). I also find that sumatriptan is the best medication to use when they start. My latest one has lasted 6 days and although I’ve managed to carry on functioning throughout and stave off the big blow out. It’s been painful I’ve lost my appetite and sleep.

Teens

At 17 I had an enormous attack of stomach pain and migraine. I was supposed to be painting the set of a play and ended up rolling around on the floor cloth in agony, I saw the school nurse and begged to just go home. Looking back I was so used to self managing these attacks that I was convincing to others that I was better than I was. (I still do this now, so if you ever do see me asking for an ambulance, I really need it.) On this occasion the School Nurse must have got me a cab home or something. All I remember was the next couple of days wanting to die from the pain. At some point a GP came out to me and when I wouldn’t let her touch me because of the pain she told me I was being a silly little girl. She gave me pethidine and anti sickness and told me I’d sleep for ages then be ok. I woke up twenty minutes after she left and was back in exactly same pain and vomiting. Eventually I was only bringing up pure black liquid (sorry) and had a circular bruise on my forehead where I’d passed out on a bucket and was still being sick. Eventually another GP came and said it was classic appendicitis. I went off to hospital and had my appendix out.

As a side note, the not being believed by doctors, the self managing of the attacks, misdiagnoses. Plus falling behind at school and teachers thinking I didn’t care has had a huge affect on my mental health and self esteem. In particular feeling as though I had failed and feeling guilt for being ill, or though I was using it as an excuse, is still with me now and it hurts to write it. I remember one of the drama teachers, who was involved in the play I mentioned above, pulling me aside and asking me if I should be doing drama! All because I’d missed the play whilst in hospital and hadn’t finished the floor cloth I was writhing on. Despite getting an ‘a’ in that course, completing a degree, and running a successful theatre company for ten years, I still ask myself the same question and it cuts really deep.

After my appendectomy (still don’t know if it was appendicitis or migraine) at 17 I kept getting flu like symptoms. I had constant fatigue and joint pains. It went on for weeks and weeks, then into months. At the time it was attributed to a glandular fever like virus that my body couldn’t fight off. I dropped back a year in sixth form and began the pattern of doing things at my pace. I couldn’t focus in lessons and would fall asleep on my desk despite fighting it. Interestingly at a similar time my sister was diagnosed with Juvenille Arthritus, and what I didn’t know till later was my mum was diagnosed with Ankylosing Spondylitis. I think this episode was either my autoimmune trigger or the first signs of activity. Multiple blood tests at the time showed positive ANA and white blood cell activity but it was never explored further.

Also from about 15 years old I began to struggle with mental health. At this time it was suggested I had Anxiety and Depression. By the time I went to University at 19 this was really affecting my life and I asked for counselling etc from my GP. By the time I was in my 4th year of university I was having an extremely difficult time personally, with my degree and at home. All of these contributed to a series of severe panic attacks. These were medicated and I just got on with it.

University

Fast forward a couple of years and I wasn’t coping physically at all. Firstly I constantly had the flu and couldn’t function. I worked really hard and just found ways of coping with feeling so ill. I went to the doctors and was told I was ‘unlucky’ to have had flu nearly every month. This was the biggest insult and I just couldn’t cope. I couldn’t get a full time job but built up my self employed work. This meant I was self managing whatever was going on in my body. I could work around the illness by ploughing on with everything I had when in a good patch and hiding when I couldn’t. This managed everything on the surface but in reality I was chasing my own tail constantly. Friends and others constantly commented on how often I was ill, other less kind comments urged me to just suck it up and stop moaning. I remember having conversations with people saying I think I’m going mad but something in my body is really wrong. I still felt like a fraud and the burden of guilt.

In 2005 I began to get severe chest pains. They were so bad I couldn’t use my arms or breathe. The pain was unbearable. My first reaction was that there was something wrong with my heart so I went to my GP. They thought it was either muscular or even anxiety and sent me away with pain killers. But it kept happening in cycles and I could feel the attacks coming. I saw multiple physios who mostly made it worse through their exercises. Eventually I saw a brilliant physio who wrote back to my doctor. She had seen me for a long time and recognised a number of symptoms pointing to something more than a mechanical problem. My trigger points were wide spread and with the other symptoms she thought that maybe it was fibromyalgia. She wrote a long and thorough report for my GP that took into all my symptoms such as fatigue, confusion, dispraxia, flu like symtoms, migraine etc. I returned to my GP who called in a senior partner and they decided together that this was something more. For the very first time I was being listened to and this GP stayed with me through a lot of the next bits.

Adulting

So I finally got referred to a rheumatologist and felt like everything would finally into place. I was finally being listened to and it was recognised that something was wrong. Within seconds of the rheumatologist walking into the room I was crushed. Before even meeting me or talking to me he looked at one set of bloods and announced ‘it’s not lupus, it’s not RA’. Only then did he examine me or ask any questions. But he never really looked or listened. He avoided eye contact with me, choosing instead to stare into his computer screen. I can honestly say I’ve never met a colder or more inhuman person in my life. By the time he abruptly said ‘you can go now’ I was more confused than ever and in tears. I began to walk out as the nurse barked ‘go get your bloods’. ‘What bloods?’ I said as I broke down completely. Then she explained everything the doctor should have done, and that he was a good doctor despite his bedside manner. I don’t think he was a good doctor and triggered lots of mental health issues. Later I got a mystery letter in the post summoning me to a full upper body MRI and physio. Apparently all ordered by the rheumatologist, I didn’t have a clue what was going on. Nor did the physio it seems. I was dumped in a cubicle with a trainee who took one look at me and said ‘I can’t treat you you need someone more senior’. They’d be in contact,  they weren’t.

The next letter I got was summoning me to hydrotherapy. Amazing I thought something practical I could do to help myself. But this was not the case either. The therapists didn’t know why I was there and asked which physio I’d seen, I never had had a proper appointment with any. So they offered me sessions which I tried. The result was cancelling after three seasons as I was in so much pain I couldn’t breathe, move or sleep. My GP wrote a letter of complaint, I was so let down and felt toutured by the treatement both physically and mentally. Again I thought I was going mad, but this time my GP was behind me and persisted. I finally had someone fighting my corner.

So letters of complaint were written and I chose my next rheumatologist at a different hospital. I decided to give it another go and this time couldn’t have been more different. He listened carefully to my history and family history. He said he thought something auto immune like was going on. The first thing he diagnosed me with, however, was Joint Hypermobility Syndrome. This explained a lot of the chest pains I’d been having, as well as other symptoms in most people hypermobility isn’t a problem but with overlapping symptoms it was reeking havoc with my joints, connective tissue and pain. I was finally referred to a specialist physio who confirmed all the previous physio I had received was more damaging than good. I still see her now and she is part of my ‘magic team’ of experts. Without all the sessions I’ve had with her, including ultrasounds and acupuncture, I wouldn’t be able to move half as well as I can today.

To be continued…

Lets rest here for now because I’m tired physically from writing this and mentally from going through it all. I hope this begins to explain to others the extent of what’s going on. But mostly its been a hugely useful process for me to go through it all chronologically and to realise why some of my behaviours and blocks towards the system are there.

Next up in part two, my thirties…

Anxiety girl

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.

Through the looking glass.

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.


How to do a bootfair

I think bootfairs are uniquely British. They’re similar to flea markets but different. Everyone rocks up in their vehicles, puts out a rickety decorating table then flogs their unwanted stuff from their boot (trunk if you’re American).


So I wrote a little guide to bootfairs here:

  1. Clear out all your junk and think it looks like the best stuff ever. Mentally top up in your head the £200 you’re gonna make.
  2. Rope in someone unsuspecting friend, who has never done a bootfair so will be unjaded.
  3. Cram it all into your car with your decorating table and camping chairs. Get your float and price labels ready and feel smug at how organised you are.
  4. Get up at some ungodly hour on the most holy of lie in days, Sunday.
  5. Drive thanking the fact no one else mad enough to be up at this hour because a) you can’t see out any mirrors or windows and b) you can’t move the gear stick without everything falling and crushing your arm.
  6. Get there and feel much better that you’re not the only one insane enough to do this.
  7. Panic pull everything out the car and frantically set it up whilst the bootfair pros pull and poke your old belongings shouting ‘how much, how much’.
  8. Panic more because you left your float at home. Go through every pocket, purse and the  footwells of the car in search of change.
  9. Step back and survey your table and notice how your stuff now looks like the shittest stuff ever and realise you’re probably gonna make a fiver not £200.
  10. As people paw at your old stuff you feel slightly naked and like everyone is judging your life right now.
  11. Get really angry and defensive when someone haggles over your possession that is £6 and they want to pay £5 but you’re not budging. That waffle maker was £30 only 3 months ago (fuck you).
  12. Get bored and take a wander amongst the rows and rows of everyone else’s toot. Aisles of soup bowls and picture frames. Clothes wracks of plus sized sequins and every species of animal made of bone china.
  13. Spend your forgotten float at the burger van to break a twenty you had in your purse and sneakily get more change. Try to get something that costs nothing but that is so suspect it should come with a public warning. Its also probably safe to eat a ‘burger’ as a vegetarian because it’s never even seen a cow. 
  14. Return to someone haggling with your buddy over a 20p item. They want it for 15p and it’s 5 pence you difference you cheapskate.
  15. Have a little rush of sales and feel energised by the fact you’ve got up at 6am, broken your limbs hauling boxes and bags and sat for 5 hours in a field for £20. That’s £4 per hour pay and there’s two of you so it’s £2 per hour, illegal.
  16. Get all energetic and upsell everything to everyone and realise you’re the best market trader in the world. Make another tenner.
  17. Feel hard done by when they collect your £5 pitch fee
  18. Start to lose the will to live and stop chatting to people that come by, play on your phone feeling antisocial and refuse eye contact with everyone.
  19. Sink into dispear when you sell the waffle maker for £3 and realise you’re the mug 
  20. Start to panic that you’ll have to take half the shit back home again. 😱
  21. Realise there’s still an hour left and pray for a reason to leave. So you buy another coffee and eat into your £25 profit
  22. Battle with yourself not to buy the kitch picture on the stall opposite because you think will make your house all edgy and arty. You’ll only put it in the next bootfair, not sell it, and be stuck with it for life anyway.
  23. Sell a last few things for 20p because the thought of moving it again makes you feel sick.
  24. Start giving people stuff for free and feel like you’re the nicest person alive.
  25. Get so tired that you can’t cook so get Sunday lunch at a pub with your earnings and feel smug that it was free and oh well you got rid of a quarter of your junk.  

I secretly love a good car boot, if for nothing else the people watching. I also love seeing people’s stuff from their lives. I find them utterly exhausting for minimal return. But I like the idea that things are being reused and recycled, I can’t bear stuff going to the tip. Plus a they’re a great exercise in minimalising and deluttering and being able to afford a lunch out whilst on benefits.

What’s your best boot fair story or bargain?

The Jigsaw

Last night I dreamt of a jigsaw puzzle. It was double sided and so large that it wouldn’t fit the table. I kept trying to find paper or card for it to rest on in sections so that they were preserved whilst I focused on another section. Then I found bigger table to move it to but it would fill this one too. It expanded faster than I could manage. 

Everytime I attempted it I couldn’t remember which side I was working on. Then I’d complete a large section and feel good and a sense of achievement. Like a taunt, I could almost glimpse the larger beast. But then I’d realise another section had fallen apart as I neglected it to focus on the current one.

All this was going on whilst others were in and out of the picture. Some people came to help and got sections complete with me. Others came and their insesent chatter and advice hindered the process. All this was trying to be achieved whilst pleasing these people and juggling the pieces. I had to serve dinner, casually chat to people. Even the task of doing something for myself got in the way. I didn’t have time for anything for me and felt isolated and alone. 

I couldn’t tell what the bigger picture was. As I completed small parts people’s faces would appear and sometimes the people around me would know the story behind who they were. This bit I loved and it kept me going.

I got to the point where the jigsaw was so frustrating that it was easier to give up and live in the moment. To ignore it in favour of activities that I could enjoy that made me feel hapoy. But then it became the huge unfinished project. The big box of broken pieces and failure hidden under the table, threatening to explode from its box as it grew.

This morning I googled jigsaws in dreams and found they symbolise the different aspects of our life coming together. That you should take a closer look to see if all the parts actually fit and come together in the right places. Do they all belong?

This couldn’t be more apt as this week I’ve shredded my life once again and asked so many questions. Do I live in the moment because it’s easier and there’s less disappointment? Do I plan for the future, because everytime I do chance and disaster dictate anyway. Am I a hedonist who is so fearful of failure and pain I miss the bigger picture? 

I’m not sure I’m doing any of this right, and it all feels out of  control. Apparently life is exciting like a puzzle, because we don’t know what it looks like in its entirety. I just feel a little lost and would like a peek at the box lid please? Otherwise how do I know if all the pieces belong and whether I like the picture at all? 

Dear Wolf

It has been a while since we had a little chat. Mostly because I’ve been busy as you know because when I am you sneak in to take a bite or two whilst I’m sleeping.

So it’s been a tough time since not working full-time, trying to manage illness and guilt, both playing off against each other. I have begun to realise that you are a black wolf, the wild cousin of the black dog. You affect me both physically and mentally. We are caught in a perpetual cycle of being ill and tired, or being kind to ourselves then being consumed by guilt for not working or not socialising etc.


My biggest frustration at the moment is when you take up residence inside my head. My head which was once sharp, intelligent, and on the ball. It ran a company, studied and managed large projects. It retained countless random facts and remembered everything. Just lately it’s not even been able to remember simple tasks. 

Most of the time this is amusing, like turning up to appointments a whole day early, despite writing the date out a million times over. Then returning the next day joking how efficient I am. I’ve even tried to lock the front door with the remote for my car and not understood why it wouldn’t work. I laughed at the time I organised an entire road trip to Scotland to visit friends and family. Somehow, despite writing everything down meticulously, I managed to book every visit and every hotel a week behind our actual trip. It was organised chaos on a spectacular level. Luckily, everyone saw the funny side and we managed to find hotels in which to stay. Most things work out eventually so I just laugh it off and rearrange.
Other times though, it is plain humiliating. Like not turning up to a huge schools day on a project I worked on for weeks because my brain just wouldn’t function. I cried when I didn’t see the results and felt like I let everyone down. The amount of tickets booked that have to be cancelled and re-booked because I cant match dates up. Keys permanently left in my front door (yes come rob me) because I forget or get confused. I get to work and they talk about my shift tomorrow and I smile because I had completely not seen that shift on the rota but luckily someone always reminds me (so far). Even as I type this on the train from London to Edinburgh, I redden at the fact the train tickets had to be cancelled and re-booked because, despite checking three times over, I booked entirely the wrong dates and days. Then the ticket collector arrives and I squirm because I cannot find the ticket I was holding just 3 minutes before. It’s humiliating and I can laugh most of the time, but as someone who was so good at life before I feel so stupid now.
The humiliation that has taken me sliding down every rung of the ladder and smashed my face on every step. I still try to see the funny side and always will. 
So Wolf, this week has been one of continuous humiliation, of which I’ll continue my frustrations in my next letter.
At the moment dear Wolfy, I ask that please can you leave my favourite organ – my brain – alone. I’ve always quite liked it and I need it most days…

Disentangle

ropeknife

You say we were two lives that need to disentangle.

But really some of each other became the other one.

That’s the problem. Where do you stop and I begin?

It’s less un-knotting and more a case of cutting it out.

It’s not like cutting out fat, sugar and carbs for my diet to make myself more attractive.

If I do this then I crave the bad.

Maybe I let a remanent of us remain?

It’s a dangerous game, I binge then purge.

More than that its like something that’s diseased.

You cut the tumour out stop it spreading.

I find rancid places to cut you out.

A surgeon, a butcher, a self-harmer.

I peel the taste buds from my tongue

because they shared a love of flavours,

that only we could understand and create.

A menu bittersweet.

I gauge the black place in my heart.

Like cutting the mould from cheese to preserve the rest.

Yet you always worry there’s some you didn’t remove,

and you’ll end up all bile inside.

I remove objects and reminders from my home.

Like cutting the pieces of a stencil,

to make it make a new pattern.

I like the way it looks better than before.

I cut poisonous people out of my life,

it’s an attempt to make it happier, but really I’m afraid.

Scared of their judgement,

because that’s what I became.

Some cut the story from the paper

in order to remember and celebrate.

But the card from last year which says ‘I’m still glad I’m in love with you’

is better forgotten as a manipulative lie.

I cut the nails from my toes,

to stop gouging out the flash at the sides.

Occasionally I don’t do it straight enough,

those feet that danced together become hot and infected.

I dig at my flesh, open wounds and peel back scabs.

I cut you out of me but I keep forgetting where me ends and you begin.

I bleed a little to prove I’m still alive,

and it’s still possible to hurt.

Maybe I’ll let a small piece stay,

like an inked scar to mark the moment we were one.

Is this violent act self harm self-preservation? Cruel to be kind?

I cut away part of myself to make room for more.

Happy New Year with Bullet Journaling

So last year I made New Year’s resolutions then as you may know ‘life got in the way’. I have a habit of starting things and not finishing them, I carry a lot of guilt about it. Partly it’s my personality and getting excited about the next new shiny thing that comes along, dropping the old boring thing I started. It’s also having multiple chronic illnesses which tend to dump on everything. Oh, and then that life bit, I’m not the luckiest soul and 2016 was an absolute shocker!

So this year I debated on whether I should do the whole resolutions thing again. I thought about making things realistic, or achievable. But that’s just not me, I need to be interested and excited and reach for the sky. The difference is how I react when I come thudding back down to earth.

Last year I dabbled with some Bullet Journaling and wanted to continue with a brand new journal for 2017. For various reasons I’ve always shied away from journaling ing and committing to paper. A Bullet Journal was the ideal balance between a to-do list and a diary for me. I began with a basic journal based on this article and bulletjournal.com.

So on the 1st I made an Amazon list of fancy pens and a new Moleskine notebook, and then realised I was falling into my old habit of overspending. So I raided my art materials and as predicted had lots of beautiful materials already to work with.

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So here is what I did:

  1. I left a page spare at the front for my index/ contents. Every page is numbered in a bullet journal and every entry is logged on this page.IMG_3635.JPG
  2. I turned the page and thought about 2017 and brain dumped all the hopes and needs onto the page. I didn’t limit myself, I just poured my heart out…IMG_3638.JPG
  3. Next I looked at the ‘cloud of words’ and put them into categories. I wrote them as a list then made these into columns on how much time and effort I wanted to put into them. ‘Being secure’ is at the top of my list, unsurprisingly, as at the moment I feel so insecure. I colour coded them so I could later see how much time per week I was dedicating.Processed with VSCO with t1 preset
  4. I took each category and thought about how I could achieve them. Theres lots of cross overs and you’ll see in the pictures one category feeds another.Processed with VSCO with t1 preset
  5. Into my life, which is chaotic at the best of time, I wanted to introduce a routine. So I began with an easy morning routine to follow everyday. I aim to create a bedtime one soon to go with it. 
  6. I then divided the activities from earlier on into my first to-do list of 2017. This I divided into ‘one off tasks’ and ‘repetitive tasks’ that happen daily or weekly.Processed with VSCO with t1 preset
  7. I then added a year planner to be able to see the whole year month by month.Processed with VSCO with t1 preset
  8. Finally I delved into January. One page for the whole month day by day. Then I transferred items from the 2017 to-do list into the monthly one
  9. Finally I drew out the week by week journal and added a key. I also included a space for tracking my health and daily gratitude. My key is the same as the standard bullet journal key
    • X = Task Complete
    • > = Task Migrated
    • < = Task Scheduled
    • o = Event
    • – = Note
    • * = Priority
    • ! = Inspiration
    • Eye = Explore

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  10. It sounds complex and labour intensive, and in a way it is. But I think it’s worth it to have a practical journal that works for me. I already love and treasure my 2016 journal, as painful as the moments were that fed it. 

I know there are many prettier examples out there, but mine is mine and works for me!

Finally I read a chapter today about beginning a new project or learning something new:

‘In the beginner’s mind there are many possibilities, but in an experts there are few.’ Suzuki Roshi in Pema Chodron’s ‘The Places That Scare You’.

Chodron goes onto say that we all begin somewhere and at every stage of learning or activity we should  be ‘open, flexible and kind’. Resolutions should not be absolute but ever shifting guides to help us learn or steer us. Our life is an experiment and we are not born as experts. She concludes:

‘At the end of activity, whether we feel we have succeeded or failed in our intention, we seal the act by thinking of others, of those who are succeeding or failing all over the world. We wish that anything we learned in our experiment could also benefit them.’

So I’ll be doing just that, learning from the process and not judging myself on the results. I will also share this latest adventure with you…

Labels

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I have eight labels around my neck,

Compartments that you put a piece of me into every time it breaks.

Sometimes you take the label out and look at it with that silent furrowed brow,

You take out your pen and scribble it out.

 

I have eight labels stamped on my being,

Explanations for being not quite right.

I read them so often I forget my own name,

When you doubt them I question my existence and identity.

 

 

I have eight labels stuck to my skin,

You can’t always see them but I feel they’re still there.

Each is an instruction to give me something to swallow,

A licence to brew 14 medicines in one body and see what happens.

 

Sometimes I wear my labels with pride,

Like badges on a lapel and membership to a club.

I want to tell people how heavy they are,

When you question them I feel lost and defensive.

 

There are 8 labels around my neck,

I’m still me.