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…

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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.

The snap election that made me snap

On Tuesday I was driving to Bristol to see my sister and her family. On the way down came the news over the radio of a snap election. Oh no, more disappointment and strife. I know that’s dramatic but I’ve been so hopeful in recent elections, and the referendum, to then be squashed and let down. Me stuck in my echo chamber of disbelief that bounces around my nearest and dearest. I didn’t even dare to hope that this may bring a different outcome. I feel defeated, dejected and a little out of fight and it’s not even begun.

But as I listened to Theresa May’s speech about her reasons why she has made an election u-turn I found myself screaming at the radio. It wasn’t anything to do with the fact she’s gone back on her word about the election in general. I get it situations, tactics, and people change.

It wasn’t even the section that declared it was Westminster that was fractured, not the country, that made me snap. I mean that part did make my blood boil. After all it’s your job as a politician to be divided in views and options and to argue and debate these. Oh yeah and the country are clearly are all at odds, hence the split vote of Brexit.

The bit that made me completely snap was this:

“Our opponents believe that because the Government’s majority is so small, our resolve will weaken and that they can force us to change course.

“They are wrong.

“They under-estimate our determination to get the job done and I am not prepared to let them endanger the security of millions of working people across the country.”

Sorry, say what?! She is not prepared to endanger the security of working people?! So what, everyone else can be thrown into the sacrificial fire? Children, young people, students, retired, people with disabilities, unemployed and sick, terminally ill you can be endangered, have your security threatened and suffer to save the ‘working’.

To me a prime minister should be saying  I am not prepared to let them endanger the security of millions of people across the country. Because that is the job of the Prime Minister; to be working for her nation. To serve the people and protect them, a nation as a whole, not just the ones you select.

I am fully aware she may have meant protecting people’s jobs when Brexit happens, but life is more than that. It’s people’s health, wellbeing, education, culture, families, freedom of expression, right to live. Brexit is about more than jobs.

I’m about to reveal a big shocker. Sometimes life isn’t black and white! Sometimes things just go wrong and the person that was working suddenly finds themselves in a different place to where they dreamed. I wonder if you have ever experienced that Teresa?

Please take a moment to step into my shoes. I followed the formula: I went to college then to university. I’ve always worked hard and above and beyond. I worked 50 hour weeks as a student and after I graduated. For years I dreamed of setting up my own arts company and worked in all sorts of jobs to make this happen. I’ve always paid tax and N.I. the whole way.

From 17 years old my mental and physical health began to play up. Despite this I carried on and tried to earn a living but always ended up in the renting and credit/ debt game. When I started to not cope and drown in symptoms these loans and debt and renting weighed me down further. I tried to live within my limits and keep on earning. I tried to reach for help to budget and dug myself out of holes. I never asked for help from anyone and being fiercely proud I did it all myself.

Inevitably when my health worsened I sunk. I blame myself for poor choices and being defiant by working in the arts. I blame myself for running a non for profit company to help others. I blame myself for getting ill and wonder if I just pulled my socks up I’d somehow manage to work.

The final rock in my pocket is your prejudice as a Prime Minister Mrs May. Your promise to protect working people leaves me out cold. It’s another albatross of guilt strung around my neck. It’s the nail in the coffin of my self-worth. I hide inside the house a lot, incase I’m showing I’m enjoying my life for not working. The reality is very different. The other day I visited a garden with a friend. I posted pictures of my adventures. What I chose not to post were the 4 hours I had to sleep to regain a little energy. The 3 days of back pain and mobility issue as payment for walking. The looks you get for not being at work when everyone else is. And most of all the boredom and frustration at not being able to have a choice.

Just before the election announcement I was visited by a Conservative Party campaigner. He arrived at the garden gate and stood for five minutes talking loudly on his mobile. I began to stumble trip down the garden to meet him and waited for him to finish his call. Eventually he did and he was pleasant enough. He asked me if I would vote Conservative in May’s local election. I told him bluntly that I never would. His response was ‘what if I said we would reduce your council tax, then would you vote for us?’ To me this was the catalyst to a rant. I politely explained back that I am currently in a system to which I’ve always paid tax and I’m being humiliated and let down. The lack of social housing means I face eviction, court, homelessness, living in a bed a breakfast and still may not get help. I spend hours filling out forms, exposing my entire soul-destroying medical history to strangers. My voice raised and my lip wobbled as I told him I’m doubted and tested and have to fight every corner to gain pretty much nothing. Funnily enough I don’t think we should be paying less council tax, but more to help and care for everyone’s security.

He looked shocked and said he ‘was sorry’ as he was already backing away. I know I may have fooled him as I’m not your typical ‘benefits scrounger’. I live in the countryside and I’m mostly well presented. I’m well-educated, intelligent and speak with a slightly posh accent. Maybe I was in disguise or maybe, just maybe, there isn’t a typical non worker. He couldn’t have got away from me quicker once I revealed my ‘not working’ card. What he should have done if wanting to talk to people face to face was stayed and listened. He could have reported back the faults in the system and cared enough to make a change to all people, not just those of certain income or social standing.

I get that people out there play the benefits system. I get that there needs to be a level of testing. But this does not mean all people who don’t work do this out of choice. I’d literally give my legs or right arm to be able to work (no pun intended). I would love to see my passion and skills put to good use, but I can’t. This has nearly destroyed me inside without the judgement of others from the outside. Save your council tax bribery and your tiny words of judgement.

Maybe I’m splitting hairs, but that one tiny word ‘working’ made me feel sick. Like I wasn’t worth looking after. Than I am a villain for claiming benefits and it makes me a burden; a cheat, a lower class of person. That cleverly placed word amongst all the others wasn’t a mistake. It was deliberately put there to make people fear and hate those not working.

Make sure when you judge someone for not working you know their story first, or even better? Just don’t judge.

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.

fullsizerender

 

 

Today

The streets itch with discontent,

The map was off centre all day.

Childish tears threaten to break through the adult face.

The stone walls sweat yesterday’s rain,

I pound the concrete with sticky heat between the layers of my clothes.

The lipstick curdles and I wipe it raw with paper.

 

Fingers bandaged from no fight,

I’m neither citizen or tourist just broken knees.

Guts cramping propel us from cafe to cafe.

Food sticks in my throat as I push it round the plate.

My hands tremble as they try to raise the cup,

Thick black coffee drives my blistered feet.

 

Something is not right in the world, I’m not quite here or there.

It’s ugly criminals saunter like they own the roads.

We ask ‘why are people so cruel?’

Then the man stops to pick up some other’s rubbish.

A women tends the silk and velvet with more love than she knows.

The smile of the woman on the bus is the most beautiful thing I’ve ever seen.

 

The flash from no camera, the sky opens and moans.

White then orange makes my heart pound.

‘Don’t walk on the floor with bare feet’ she says.

It makes me want to feel it’s force, to feel alive,

to take off my socks and dance with life on the cold tiles.

I bleed with the sky and prepare to begin all over again.

All brine and piss and vinegar

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All brine and piss and vinegar,

my mouth is raw.

The pages full of false knowledge

blame the ‘lies’ that my tongue spits.

 
Blisters appear with each spiteful word,

spat at you in a moment of rage.

Anger trapped, desperate for an escape.

They are your lies not mine.

 

Tongue raw from yesterday’s drinks,

burnt and scraped with comfort eats.

Morsels that last a moment,

before they decay and rot.

 

I cannot taste anything but bile,

and vinegar and pain.

I seek the comfort of cold, smooth

kind and compassionate words.

 

My mouth is silenced,

I wake with it glued tight,

a mess of brown clotted blood,

teeth caked in earthy dried fluid.

 

But from inside there is something,

spun from a silver thread.

It speaks truth through your lies.

It’s a tale yet to be told.

 

‘All brine and piss and vinegar’  is borrowed from The Decemberist’s song “Grace Cathedral Hill”

The book that told me ulcers are caused by lies also told the reader period pain was caused by not embracing being a woman enough. I rarely lie, any more than anyone else. I love being a woman. Go figure? It’s like trying to be rescued by a Christian who keeps on insisting my auto immune is because I don’t believe in god. I don’t. Theres some proper drivel out there. I choose to follow my heart.