Vibrations

As you may have noticed, I’ve been writing a lot. Splurging all over the screen. Why? Mania. I don’t have Manic Depression but sometimes things happen and everything speeds up and whirls and bang: splurging and purging and rushing and palpations and fear. That is what’s happening. Monday’s Medical Double Whammy, the stress of filling in my ESA1 form and getting it ready for posting, a ‘talk’ with my Dad that put my heart rate up yet made it sink, a social event that was far away and caused more more than a little lamentation and great sadness… all under the pall of Menstruation. An emotional snowball.

During the above I have been suicidal and have visualised really hurting myself. I am having the occasional moment of ‘Phew, calm, normality will return’, but ‘I’ve only got to survive until my Dad dies and then I can take my life’* has become the New Normal.

The chat with my Dad was about money. Since I was found ‘Fit For Work’ last May, he has been supporting me financially. Since before Christmas he has been ‘encouraging’** me to re-apply for ESA. I have been working on this since then, constantly. I have written to my MP, I have written to many charities looking for an Advocate to help me and I have been trying to get a diagnosis for whatever is going on in my left ear that makes me dizzy, deaf and confused. It’s taken a long time to get anywhere. I really have been trying. I began writing this because I wanted to record my efforts. I have an Advocate, I’m near my ear diagnosis. But along the way my Mental Health has suffered. My Dad asked me if we could back-date the ESA claim to last year. My negative elicited a slightly aggressive response and the phrase ‘So I’m just going to have to write all this money off?’ (all the help he has given me, his Wonky, pain addled child). When was I going to get some money coming in? (ESA or another benefit), What happens if I don’t get the ESA?. I told him. If the ESA1 is ok I should have something coming in soon. If after that I undertake the ESA50 (? Medical Questionnaire) and WCA*** and I don’t get the ESA, I will apply again, with a different illness: I explained that I have been keeping conditions secret in order to use them in the future. If my recently acquired deafness and my long established Scoliosis, Chronic Spinal and Neck Pain, NEADs, EDS, Chronic Anaemia, Clinical Depression and Anxiety don’t persuade the DWP, I shall use my Secret Sauce of medical problems that I’ve not yet seen the GP about.

That is my life: not seeing doctors because I need to hold things back in case. A savings account of body parts that don’t function.

My Dad encounter was depressing, I won’t lie: I felt low directly afterward because it was a mixture of health talk, money talk and plain emotion. I don’t find it easy talking to my Dad. Mum was always our conduit. And her absence makes the emotion worse. Feeling like a burden – something to be written off as a loss, made me feel a little less. I faded for a moment. My Dad has frequently reminded me that it was he who wanted me and had to persuade my Mum to have me. I only remembered that today – 3 days after our talk.

The Social Event caused me a mixture of familiar and unfamiliar anxiety. Familiar: I have to get somewhere via Tube on time. I have a map. But how long will it take? Will I be able to do the walk bit at the end? The chap at the station tells me to change but can I risk the stairs to gain 5 minutes, when the stairs might mean I can’t walk at the other end? Will I get a seat on the Tube?  Will the seats at the venue be comfortable – will I be able to stretch my legs and back and do all the things I need to do to be in less pain?**** Will people be repulsed by me and my disgusting Acne?  Do I have enough pain relief meds and Beta Blockers and Diazepam with me? Will I be able to afford a drink at the venue? The Unfamiliar: too personal to say, but it’s ‘Romantic’ in nature. So it’s been written about by many people before – it is not unique to me. I believe we are unique in our pains and failures – just as ‘happy families are all alike; every unhappy family is unhappy in it’s own way’ (good old Tolstoy – Anna Karenina).

All of the above has lead me to a blurty writing spiral, and a suicidal spiral. I am having to work very hard to keep bobbing up to the surface and to keep my mind occupied. The writing is helping (good for me, bad for you) but I may have to go to my GP on Tuesday and have them raise the dose of my Citalopram. I’ve been on a higher dose before – I did not like it. I have been on an even lower dose than currently, but Mum being ill raised it. 2 years ago putting my meds up might have made me feel bad. Now, I feel nothing, which is why they have to go up. Feeling nothing – not even the vibrations from your fear – is a bad sign.

*I promised my Mum I would not kill myself. I have now promised her (mentally) that I shall not kill me until my Dad dies.

**Nagging, he really has been nagging. I don’t respond well – it makes me anxious and then I get ill and can’t do what he wants me to do and the cycle continues.

*** Work Capability Assessment: they are notorious, they are the medical means test once administered by ATOS and now MAXIMUS. I’ll write more about them later.

*** *Stretches and physio, take pills throughout the film I’m watching without disturbing people… etc. etc.

 

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Dear Right Buttock….

….We’ve been together for a long time. We know each other well. We’ve been through some stuff. You’re the reason I’m currently going to Physio. I’ve been good. I’ve treated you well. We’ve collaborated on many projects, and our work with the Physio has benefited us both. We clench together, we lift together, we walk together. I keep you snug in soft fabrics. I wash and dry you. I let you (with Left Buttock and Anus) choose what kind of fart we’re going to have. You’ve helped me make my Mum (and other people) laugh when you jiggle around. You choose my trousers for me, and my pants. You even choose the type of noise I’m going to make when I stand up and sit down*. So why, with our shared history, shared laughter and shared production of noxious gases and funny noises, are you behaving like a Barbarian to me? Hmm. What have I done? I didn’t carry anything too heavy. I didn’t walk too far without my Special Shoes and Orthoses**. I didn’t try to have Intimate Physical Contact*** and fun with anyone. I didn’t try to wear heals. I didn’t do Secret Funky Dancing**** when no one was around. I didn’t even sit in once place for too long. I think you’re being unreasonable. There I said it. I think you’re being a horrid. Ppppppphhhhfffffft! I don’t like you.

But I’m stuck with you, Right Buttock, like a married Catholic couple in the 15th century who definitely did consummate their marriage, we can’t Divorce (if we did separate, we would be treated as ‘other’ by Society). So I’m going to medicate myself until I am unaware of your presence, or you start being nice again.

* Out of my mouth, as in ‘Grrrnarrrgh’ on standing and ‘Ooof uck’ on sitting.

**I can only walk in anti-pronation and shock absorbing running shoes with specially made carbon fibre orthoses. Is it ironic that I have to buy professional running shoes and I can’t run? I can just about get around the house in slippers, but really fail walking in bare feet. I don’t know why I can walk in slippers but not bare footed. I also find hard surfaces very difficult to walk on. My garden path is a nasty experience.

https://en.wikipedia.org/wiki/Orthotics

***That would be Sex.

****Secret Funky Dancing – in a typical dancing situation, I usually have to sit – but I can do some Damn Fine hand jiving. Seriously, I’m a master. But at home when I feel I can, and when I hear a certain song, I do Secret Funky Dancing. It’s bad, it’s mal-coordinated, it usually ends up with me knocking shit over, being breathless with a rapid heartbeat and very sore the next day, but it has to happen when it has to happen. This is the song that is guaranteed to bring on the Boogie: https://www.youtube.com/watch?v=eJp7zbjn7Wo If you don’t know Melanie Safka (just known as Melanie) try her out. I didn’t learn about her until I was in my late 20’s and I love this song.

I want to make it clear that I currently have an excellent Physiotherapist – the best I’ve ever had, and I’ve had about 14 of them. My Buttock being rebellious and my Sciatica trying to come back is nothing to do with her, or my conscious action, it’s just a Buttock being an Arse.

Hospital Doodles

I’ve not drawn anything seriously since June last year. I was undertaking a City and Guilds Level 2 course in 2D and 3D Art. We did drawing, painting and sculpture from life models and from nature and architecture. The course lasted a year. From 2012-2015 I took several courses in drawing including two other C&G courses. Though my degree was in Art History, no practical art was involved. I had not really done anything formal or practiced in art since my A’Level in 1999. I went back to it just to do something, and then it developed into a potential career. I undertook voluntary Art History teaching at the charity St.Mungo’s, who have a Recovery College in Southwark for their clients. They teach all sorts of things – it’s an amazing and progressive place. I was aiming to get practical art qualifications that would allow me to undertake training as an Adult Education Tutor. That was the path I was on, with the full backing of the Job Centre, when my Mum became ill and my ESA was cut off, and I was found Fit For Work. I finished my C&G Level 2 in June, even though Mummy was sick; but I’ve not done anything but doodles since. I remember bringing her my Certificate when I got a Distinction in the City and Guilds. I never bothered to show her my Degree Cert – Hell, I didn’t go to Graduation, but I rushed to an Adult Education Centre to get my C&G paper. I brought it to her in hospital. On Monday in the same hospital, I doodled a made up face* and drew from life – from my own left hand. Biro is a fun medium.

Here is my doodle:

ahmay.jpg

I realised that I was drawing ‘properly’ if rustily, when I caught myself sticking my tongue out of the side of my mouth, and putting my finger to my lips: two concentration habits that became extreme when I was drawing regularly.

Don’t be alarmed by the weird looking fingers: I have weird looking fingers, I have (mild) Arachnodactyly – spider like fingers. All my finger joints are Hypermobile and wibbly, and the bones in my fingers are very thin, excluding the joints at the base of my thumbs which are lumpy with Arthritis. Hybrid hands – long thin fingers with big wrinkly joints, tiny bones, under-sized little fingers and knuckles, and tight, sinewy palms. When I try, I can make my hands look like something from ‘An American Werewolf in London’, with concave palms (image care of the BFI website):

It’s not a good drawing, but it’s a start. And that is important.

*If I could, I would be a portrait artist. I wrote my Dissertation on British Portraiture, I worked for the NPG (National Portrait Gallery) in the Archive and then for the Royal Society of Portrait Painters. There’s a theme. If I ever get back on my feet financially, and mentally, and physically, this is what I want to try and do. I told my Mum so. I’ve been interested in portraits since I was about 8 and went to Paris and saw portraits of Napoleon and his family. Making Art costs money. Drawing from humans takes money and a type of bravery. You can’t do it if you’re unstable. No, I can’t do it if I’m unstable. I must stop saying ‘you’ when I mean ‘I’. My experience of this world is not universal.

http://www.mungos.org/st_mungos_recovery_college – an excellent place. One in London and another in Bristol. If you ever think you can help, and you want to, do. The range of teaching and experiences is great, and not just homeless people can use it.

https://en.wikipedia.org/wiki/Arachnodactyly

The Royal Society of Portrait Painters: http://therp.co.uk/ – not nearly as stuffy and traditional as you might think. Their annual show at the Mall Galleries has just closed, but if you like the work, have a look at the BP Portrait Award at the NPG later in the year.

The Mall Galleries: http://www.mallgalleries.org.uk/ – not as well known as other London Galleries of Contemporary art, old fashioned to an extent, but good people. A charity.

I love the smell of bureaucracy in the morning…

This may be brief, or jumbled, or both. I woke at 8.30am to phone my GP. I wanted to get an afternoon appointment because that is when non-urgent cases are seen and I was non-urgent: I wanted to get a ‘Fit-Note’- ‘Statement of Fitness for Work For social security or Statutory Sick Pay’. I’ve not applied, asked, for one of those before. Way back when (2008) I had to get a ‘Sick Note’ for DWP application, my GP filled in a form, by hand, gave it me, and I sent it off. That was the last time I had to ask him for such a thing. Since then, much has changed. The ‘Note’ is computerised, and has interesting statements on it with tick boxes; for example ‘I advise you that:  [tick box] you are not fit for work, [tick box] fit for work, [tick box] you may be fit for work taking account of the following’ and the following are suggestions for making returning to work easier, such as [tick box]’Altered hours’. Advice from the DWP to GPs filling in this form is about how work keeps people healthy and is good for them, so the GP shouldn’t write them off ([tick box] you are not fit for work).

I could not get an appointment to see my GP this afternoon, only the morning, but when I told the receptionist what my appointment was for, she told me I could see the Surgery Manager and he would organise it – come in the afternoon. Why could I not make the morning: because I had a hospital appointment! Yes, I was going for a medical double-whammy. And what a whammy. The short version – my hospital appointment (ENT) was 11:10 am, I was seen at approximately 1pm. I don’t actually know the time because the room we were in had no clock… oh, yeah. Old Skool Orwell situation. But the time went quickly as I scribbled in my notebook. And the outcome was acceptable. I (unexpectedly) got to see the head honcho Specialist because I am ‘an Interesting Patient’*. I can’t disclose the condition I have until I have the official letter – that’s my policy. But it’s rare and there’s no treatment. After the hospital I got a bus to see the Wizard, the wonderful Wizard of West London**.

To get or not to get, a Fit-Note. Holy Hell, things have changed. The poor Surgery Manager! He asked me which conditions I wanted the note for, and then had had to go through ALL my Specialist letters (helpfully scanned and ready to view) to find the exact ones where my conditions were confirmed. This did include going as far back as 2004. He had to check everything. And it took a long time. I could not remember all the dates and Specialists.  I understand the need to cover the Surgery Arse in these cases. I’m glad he did it. But it made me very nervous. Indeed, it made me shake. After printing it out, he went to see the GP on my behalf to get it signed. The Surgery Manager and I have not always been friendly. But since Mum died he’s been helpful, and I really can’t fault him today, indeed, he was kind. And when he takes blood, he gets it straight away BANG! Which is rare for me. I have deep veins.

So, I have another diagnosis, and a Fit-Note and I’ve filled in my ESA1. I just have to send it off. It wasn’t as bad as the ESA50*** but it wasn’t nice. If I had a Partner I’d be quite embarrassed to ask them to fill in their part – why should they be considered connected to me when it comes to my inabilities? Also, I got very scared when I read about the working and not working  and P45’s. I’ve not worked since 2007 and have no idea of where my P45 is. Much of my paper work got destroyed in two floods in my home. And part of my Depression and Anxiety manifests itself as an inability to manage myself. Sometimes I can’t manage my pants, sometimes I can’t manage my meds, nearly all the time I can’t manage ‘Official’ paperwork. Forms fill me with dread. I styled this one out by looking at lots of pictures of hands on the Internet and knowing that I can have a sleep-in tomorrow and take a laxative tonight… you know, all the cool relaxing stuff that helps you through stress – sleep and poops.

I do hope the sleep comes, and the poops do too, but in an orderly fashion – polite poops.

*I have heard this before. A previous Specialist called me ‘An Amalgam of 5 percents’ because I had so many conditions that ‘only’ affect 5% of the population. Funnily enough, since he said that, many of the things I have have been discovered more common: thank you genetic testing and the Internet.

**My GPs Surgery Manager.

***Or whatever the Ego shrinking, tear inducing, horrorshow form is called. I’m saving up Diazepam for that one.

 

 

Reaping

Reaping what you sow. When you have illnesses that clash, medications that clash, behaviours that can have unexpected outcomes, you have no idea of when you’re sowing, what your sowing or when reaping will begin.  Yesterday-sterday was a day of Reaping. The sowing happened all week. But I didn’t see the harvest develop at all. I had a ‘busy’ week – I had a very intense Mental Health assessment on Tuesday, followed by volunteering (the same day) which lead to my not being able to sleep and cascading into a pothole of despair, a day of failure and travel across London on Thursday, then volunteering again on Friday, after which I fell asleep on the kitchen floor, woke up at c.3am and stayed awake until about 10am on Saturday. I woke later on Saturday with a Migraine – the Reaping. Over the week I’d noticed I could not eat, that my hair is falling out and that I really can’t poo. The poo thing is long standing. For years (nearly 8) I’ve had to self evacuate my bowels. But this is different – didn’t even get a hint. I can’t take the laxatives I have prescribed because they seem to be having a game with me where I just get diarrhoea rather than manageable soft stools that want to come out. But these signs didn’t say ‘Migraine – Saturday!’.

I’ve had Migraines since my early 20’s, I have Rizatriptan* for them – it helps a lot, but it doesn’t kill them off as it used to. Since my Mum died they have become more frequent. This was quite a doozy. Though I took the pill at about 7pm (with a mixture of painkillers, Diazepam and Propranolol – Rizatriptan’s side kicks), when I woke again at about 4 or 5 am, it hadn’t really gone. I went and had a shower (washing my hair and getting my temperature settled helps) and went back to bed and cried and ‘cut’** myself. Eventually, with the soothing voice of Liza Picard via CD, I got back to sleep. Waking at 11:30 am to grab some clothes in case my Cousins came round to garden. Later I had another nap. I’m still up (2:45am Monday) because I have an ENT appointment at 11am and I’m hoping to phone my GP and make an appointment to see them about getting a Sick/Fit Note for my ESA  application – for both of these I need to get my paperwork in order.

Having appointments (Mental Health, ENT, potential GP) hanging over me is not good for my mental health or physical health. Having the stress of volunteering waiting for me does not help. First comes the Migraines, then the ‘cutting’. What next? I’ve definitely been suicidal this week, but my promises to my Mother and my religion means that this is not an option. I’d like to drink or take non-prescription drugs, but I’m really not lucky enough to risk it. I’d end up having complications and being even more dependent than I already am. I’ve taken off one of my volunteering shifts so I can really get to grips with ESA things, and have one less thing pushing down on me. I just hope I remember to tell the GP everything I need to, and also that the news from my ENT is bearable. And that he’s not too much of a jerk (he was pretty jerk-like last time). Wish me luck (as you wave me goodbye).

* I was very lucky not to be fobbed off with mere painkillers re: Migraines. My Dad suffered for years with them and Mum and I headed many a time in the early am to Marble Arch 24 hr pharmacies there to get a branded product that’s really just Ibuprofen and Caffeine, because that’s what the GP said. I got to see a Neurologist and I am thankful every time I need my (very difficult to open) Triptans that I had him. Migraines affect your whole body and should be taken far more seriously than they are, particularly in young people. Oh, a neat thing I was taught via the defunct NHS Direct during my first Migraine – blood sugar is very important. If you can, drink some juice with added sugar (a glass of orange with some extra sugar put in) before you vomit or with any painkillers you take – it really helps.

** I don’t ‘cut’ – I scratch with a needle until the skin is cut. I don’t cut with a blade because 1) I heal badly 2) I am very unlucky and likely to cut in such a way as to f*ck up my arm for good – rendering it useless 3) I want to be able to hide the marks 4) I want to be able to use the site over and over – so why do a big gesture that renders you scarred immediately, when you can take your time? I cause myself just enough pain to make me calm down – that’s why I’m doing it. It’s all about control – for me, if I had a blade, the blade would have too much influence on the outcome. With a needle, I have to make choices at every stage.

 

 

 

Another one bites the dust

It’s approximately 3:30 am here in London and I woke up about an hour ago. The ‘thing’ biting the dust, is a Saturday. This is a regular thing for me and I keep account of how many days I sleep through. But I am marking this now unremarkable happening because of something I have just completed. Just before making a tea and sitting here, and after a heroic pee, I cleared a path through our ‘utility’ room so my Dad and a minion could wheel barrow 4 tonnes of soil from the front path to the garden tomorrow (well, today, but, well Sunday).

I sleep a lot because I am genuinely exhausted. I can’t recall exactly when I went to sleep on Friday, or early Saturday morning –  I had been volunteering in the afternoon, and I frequently can’t sleep after that. I either crash when I get home, or stay awake wired for hours – too tired to do things or concentrate, but too humming to sleep. It’s like getting ‘second wind’ when the first one was a dove fart. What I do remember is waking up at about 8pm on Saturday unable to move anything but my eyes, and diaphragm. I experience this a great deal when I’ve ‘Dead’ slept after physical activity. My hands stiffen and I look like recently poisoned vermin – hands curled in the air etc. After the ‘rigor’ wore off, I checked my clock, saw the time, and fell asleep again. I must have turned the light on beside my bed because when I woke up around 2: 15 am, it was on. I was aware, this waking, of what the time might be without checking, from the clanking coming from the railway. I had to decide if I just attempted to sleep again, or got up and did that I needed to: clear a path through the utility room.

So, after sleeping dead through a sunny (was it?) Saturday, and the Eurovision Song Contest etc. I get up and go to clear a path through piles of clothes and boxes expertly placed over years by my Mum. My Mother could stack’n’pack like a pro. No one I know has ever fitted so much stuff into such a small space (she was also very good at chopping fruit, veg and meat into thin slices – years in catering). I am the Anti-Mum in this. She used to call me ‘What-A-Mess’ after the children’s book because things fell over when I looked at them and I always have a haze of fluff and detritus around me. The room I’m trying to clear a path through contains our boiler, washing machine and tumble dryer, shelves of cleaning products, plastic draw sets filled with my Mum’s vitamins, potions, lotions and nail varnish* and all our washing, as well as plastic boxes full of things inherited from my Gran in 2008. Oh, and a car jack. It’s very full. Very full. I’ve been gradually trying to clear it since Mum died, but I’ve not been able to bring myself to throw out all of her pills, face creams and make up. I admit I am sentimental (emphasis, perhaps, on the ‘mental’) about her maquillage (though she’d give me a look for that word). My watching her apply her ‘face’ is my earliest memory of her and it is a constant. I always stopped what I was doing and watched her, even up the last time when she was in hospital – she painted while I brushed her hair**.

My Dad wanted to clear the room – he’s not a total arse about that kinda thing – it wasn’t left to me just because it’s home/ woman stuff***. But I knew he’d try and throw things out that I am just not ready to get rid of. And I also didn’t want him to find some of thing things my Mum had hidden in there. I also didn’t want him to mess up the piles of clean and dirty clothes etc. etc. But I slept through today. And when I woke I did expect to find that room ‘Dad’d’ – cleared by Dad. I would just live with the side effects if he’d done this. He has work to do tomorrow and wants to know he can get it done. When I did get up, the room was exactly as I had left it. So I cleared it. Piling clothes on clothes on duvets on towels. Bringing the drying rack (loaded with pants etc.) into the kitchen, moving the ironing board with it, turning the draws round so they projected less. I tried to move the jack outside, into the empty space beside the house, but it was too heavy. Now this is an important part of this story. The jack is used to lift cars up so you can change a wheel. It’s very heavy – solid steel with hydraulic parts. I tried to lift it into the outside because it won’t wheel over the door frame. So I, chronic pain sufferer with twisted back, tried to lift something that lifts cars. I did it, I got it outside, but I couldn’t put it down, so I turned round and put it inside. I couldn’t put it down because it would have landed on my foot. But this is the crazy type of stuff I can do – lifting steel jacks – and don’t think will hurt me, or add to my hurt. I don’t think ‘Hey, you, 35 year old lady, what the hell are you doing lifting that thing?’, if I saw someone else try and do it, I would stop them immediately. So the room is cleared for my Dad to move 4 tonnes of soil. And I am sitting with a tea and writing before going up to bed. It will be light when I go back to bed, and I hope still light when I wake so I have some idea of the time and day etc.

*When she retired my Mum suddenly started to spend money on things she’d never cared about before. And she’d stated she didn’t care. She bought face creams, vitamins and nail varnish. TV shopping channels helped. She loved it all. There are 3 sets of plastic draws full of it, and I’ve cleared about 3 draws. It’s going to take me a long time to get rid of her ‘face’ – make up is so personal and with us it was a bond. She was encouraging me to wear it when I didn’t want to. She also wanted me to smoke. Rare woman.

** A sign of just how sick she was. Mum hated anyone ‘fiddling’ with her hair. I had never been allowed to touch it before she got sick. As she got sicker it fell out – she wasn’t having chemo or anything, she was just dying. I kept the hair I brushed out and make a locket of it for my Dad. He wanted such a locket.

*** I just want to make that clear. Yes he’s 72 and if I don’t wash his pants he won’t have any, but it’s not conscious. He can and does look after himself, it’s just habit. And he admires women who are hard working, ambitious and interested in their careers.

Postscript/ addenda: I finally posted this on early Monday morning (it’s about 1am). I slept until 1:30pm on Sunday, when my Dad called me to make some lunch for himself and my cousin – they were soil moving. I did this and went back to bed about 4pm, in my clothes, until 11:30pm. I can tell you that Sunday was sunny and that lifting jacks is something I should not do – my brain should just stop me looking at stuff and going ‘I can lift that’. My Dad was pleasantly surprised at my having cleared the room. Which is good.

What I mean by car jack: https://www.machinemart.co.uk/p/ctj3000g-3-tonne-professional-garage-j/?da=1&TC=GS-020113030&gclid=CKfLkYuk3cwCFWoz0wod-TsO2A

What-A-Mess by Frank Muir:  here he has a bird in his hair – https://alliwaw.files.wordpress.com/2010/03/what-a-mess.jpg

https://en.wikipedia.org/wiki/What-a-Mess

 

 

 

Self Roasting Chicken

This blog was almost called ‘Hypnotizing Chickens’ – a lyric from the Iggy Pop song ‘Lust for Life’. ‘Chickens’ is my go-to word. I say it a lot. I write it down in funny script. I annoy people by answering everything with ‘Chickens’ or ‘made of Chickens’. It started some years ago, almost a decade. I like real chickens – hens, particularly funky ones like Polish Hens who have wonderful plumage, or Burmese Bantam Roosters who have feathery feet. But, in the title to this post, I am referring to myself. It’s been hot in Bowermanland, and heat does not suit me. I have stiff joints – broken toes, Wry Neck (Torticollis), frozen left ankle. I have sensitive joints – knees, elbows, shoulders, ribs. I get pain in all of these places. Long has it been said that arthritic or damaged joints like heat and hate cold. My joints hate heat. They loathe it: they would take it outside and kick it to death if they could. They don’t like extreme cold either, but it has to be pretty extreme (by British standards – so -2 or lower). But it’s not just my joints that hate the heat. All the soft bits attached to them do too. I don’t know what causes my extreme reaction to heat – my complete inability to function, and the urge I get to cry when the temperature goes above about 16 degrees. For me trying to move in heat is like trying to wade through jelly from the neck down. I sweat a great deal, I can’t cool down, my heart rate goes crazy and I even find it difficult to breathe. There is no point in asking me to do anything that involves thought when it’s hot – I can’t do it. It’s not even a question of concentration, it’s at a lower level than that, I can barely write my name when I’m hot. Yes, my hands seize up, my knees ‘ping’, my neck feels like concrete and my skull like someone is trying to squeeze it into a tiny hat; but it’s more. I seriously feel like I’m dying when I’m hot. This weekend I just lay on my bed in my pants with the windows open, passing in and out of sleep, getting up for urination and re-hydration in the early hours. That is how I shall spend my Summer, if we have one. Why am I sharing all this with you? Because there is a misconception about people with physical pain and heat (I’ve had 20 years of “Oh, I thought hot weather was good for your joints!”) and because it brings up another subject: Depression.

Hang with me, it will become clear.

Being hot makes me miserable – properly sad, and sometimes a little scared. But it doesn’t make me Depressed. In fact the sunshine and brightness, the way the air smells in Summer as a hot evening cools, makes me feel good. I just can’t go out in it. I may be feeling physically terrible, but that does not mean I will be feeling mentally terrible. It is true that sometimes feeling physically bad (pain mainly) can lead to greater Depression. Certainly exhaustion does this. But the two are not universally linked.

This lack of link is being addressed here because on Sunday (a very hot day in Bowermanland), in the evening, I received a call from my local Mental Health Service (MHS for short). It shocked me as I’ve never been called on a Sunday before by any health service. The MHS called because I had been referred to them by my GP for an assessment. I first started using them in 2006 and stopped in 2011. 2001-2003 and 2006-2008 were ‘Peak Loony’* in Bowermanland. Luckily the second dates saw me getting support and help, when the first dates (which coincided with University) did not. However, while being with the MHS I had been medicated (Citalopram and Diazepam) and given therapy (CBT and Group) and things went well until last year. Ahh, 2015, a peach. The clusterfuck that saw my Aunt Nan become psychotic and then suddenly die**, my being taken off of ESA (found Fit For Work) the same week as my Mum was diagnosed with Terminal Lung Cancer (that would be 1 year this week), my Dad in response to this, destroy our house*** and my Mum sicken and die, also saw me stretched a bit thin. I bimbled along. I was very busy. But now 2015 has come back to bite me on the arse twofold. 1) I have to re-apply for my ESA. When Mum was alive it was decided that I would have parental support in the manner of monthly money – 50% of what I was getting on ESA – and that after Mum died, I would apply again for ESA. This is not an easy thing. This, for me, is stressful. Extremely stressful. I have Depression, but I also suffer from severe Anxiety and Hypertension. I am on Beta-Blockers and Diazepam. ESA makes my Anxiety hit its ceiling. Seizures happen, palpitations, nosebleeds and Trichotillomania. 2) Having coped in the late months of 2015 after my Mum’s death in October; after organising the funeral, sorting and giving many of her clothes to charity, giving her collected pennies to the church for their homeless shelter, helping my Dad with his on-going re-building of our house and getting used to her lack, my shell finally buckled. And to bring variety, buckled in new and exciting ways. For the first time in my life I actually, properly, hurt myself. I carved a symbol in my arm with a needle. I scar easily, I didn’t want to bleed (need not to let Dad know) – therefore needle scratches. I’ve been pulling my head hair out for 20 years, but I’ve never cut myself. But it happened. And I told my GP, and she referred me to the MHS and they called me on a very hot Sunday to ask me some questions and get me an appointment. That will happen next week.

*’Loony’ – I call myself a loony. I call myself lots of things. ‘Wonky’ is another one. I use a lot of terms that are generally regarded as bad, and that were common in The Bad Old Days. I don’t call other people by those names unless they too, use them to and with me. So I won’t refer to an unknown depressive, or even a known one, as ‘Loony’, or disabled stranger as ‘A Wonky’. I know that many people won’t find this ok. They won’t like my lexicon. That is just the way I have developed. If you don’t like my language, mentally add a ‘bleep’ when reading those words. Scold me in your mind etc.

**My Aunt Nan – my Mum’s older sister and last relative. She had a break-down late 2014 and by February 2015 she was very, very mentally ill. On the first Friday in April her health visitor noticed she was physically sick and had her taken into hospital. She was diagnosed with a bladder infection. On the following Monday, after a visit from my Mum, she got up from her chair and fell down dead in the hospital. She had DVT and a Pulmonary Embolism. My Mum had been living with her and her husband in Bucks 3-4 days a week since November – trying to help. It did mean I didn’t see my Mum a lot in the months before she was diagnosed as sick. I will admit to being angry about this. I’m not proud of it. Her sister’s death affected my Mum a great deal.

*** Mum and Dad had not decorated this house since I was born. They already had plans to renovate – but my Dad not retiring and then my Aunt getting sick got in the way. So, my Dad reacted to my Mum’s diagnosis by ploughing ahead with the work. My Mum was given 6 months to live from May. By August our halls, stairs and two rooms had been stripped, re-plastered and painted. New coving, new fire-places, no lights, no shelves, no curtains, bare floorboards, dust…. When my Mum was lying in a hospital bed in our living room on 24/7 oxygen and regular Oramorph, she lay in a freshly painted room with a new fireplace, but no f*cking lights. I had lamps plugged in all over the place. And there was lining paper on the f*cking windows in place of curtains. My Dad is a Special Snowflake. We still have the lining paper. The lights arrived just after she died.

http://www.nhs.uk/Conditions/trichotillomania/Pages/introduction.aspx

Mr.Pop – yes, I did first hear this on the ‘Trainspotting’ soundtrack. I was too young (or timid) to see the film, but I listened to the OST while doing my GCSEs. It’s a soundtrack that still stands up for me.

Of Rare Delight

I have been lucky on several occasions to enjoy the delight of having all my physical pain removed from me unexpectedly. I have dreamt I died- I existed at that moment pain free and without laggard body, and it was glorious. I went to a gig where the music was so vast that it pushed the pain out of my body for a full 4 minutes. I woke up in hospital so comfortable, so very comfortable and peaceful and blinking without any conscious feeling of my person – I could have been a pair of eyes in a jar.

These occasions have sprung up as a subject because I am currently in an opposite situation. My oldest pain – the ‘triangle’ of discontent from my head, down my neck and across my shoulder- has decided to assert itself. It’s placement in or near my head makes it most difficult to ignore (so close to the place of thought and internal monologue). It’s not the worst pain – I actually find pains in my knees or elbows and my newly diagnosed Costochondritis more powerful and certainly more annoying. But the Old Triangle makes me nostalgic. It’s been with me so long: 14 years the parrot on my shoulder. I have a clear memory of gaining it, of it’s first treatment (and my first experience of Diazepam – I keep the bottle from that time as a trophy) of times it influenced my experience of life and, as recounted above, moments when it went away.

The Triangle is the foundation stone of my pain problem. It is the original element considered ‘Chronic’ as it does not respond to treatment (pills or therapies) it doesn’t ever go away fully, and it can ‘come on’ (increase in strength rather than start up, as it’s always there) with little or no provocation. It has a mind of it’s own. I know what has awakened my Kraken – Physiotherapy. Friday I went to visit my Physio and we added new movements that involve my neck. My neck is very stuck in it’s ways, it doesn’t like change. We’ve had this problem before. I’ve had to stop doing movements because it decides to throw a tantrum. But this time I’m not going to let it’s loud and loutish behaviour win. It doesn’t know that yet. I’m going to keep doing the movements, and it’s going to be painful.

Giving your pain a personality, or visualising it as an actual 3D object or even animal is very helpful. It separates it from yourself and gives you something tangible to fight. Many people with unending, unresponsive pains are not believed by doctors or friends or relatives etc. because there may be no visible cause. There may be nothing on the scans, nothing on the blood tests and humans like to be able to see their enemy and they like ‘evidence’. When pain is part of yourself, when you fight it, you are fighting yourself. In blaming it for problems – for not doing things, missing appointments, being fuzzy headed at work – you are blaming yourself. This is not good. It’s difficult enough to cope with any pain (broken leg, root canal etc.) let alone one that no one can see a cause for, without literally blaming yourself for it. So, making it a separate ‘thing’ helps. Your pain is separate from yourself, you are it’s victim, you can beat it up and work against it and that is good.

I have ‘given up’ on Physiotherapy before. Sometimes (I’ve had multiple therapists) it’s been because my physical state has demanded it – I’ve not been able to make the appointments. Sometimes life outside has taken over – University was one time, my college work make getting to my appointments impossible. Other times cost- going privately for Physiotherapy is expensive. I’ve had to do this twice when the NHS waiting list was approx. 8 months, or when I’ve had to see a very special recommended wonder-therapist person. But this time I’m not going to give up, even if as I write this The Triangle is being a Bitch of the first order. What is different about this time? Well, it’s a rather shameful thing. I’m getting old, my Mum is dead, I spend 1/4 of my life stuck in bed and I don’t want to go on. For years I’ve fought my depression. But I’ve not been as industrious with my person. Now I believe I have to be. Something,  little bell at the back of my skull, is ringing and saying ‘you have to do this’. I don’t know what it is, but when I’m stuck getting out of bed, or getting up from the chair, a little tinkle happens and I remember my Mum, and then I swear loudly, get up take all the meds* and then do the damn movements.

Beyond bells and age and visions of dead (and well beloved) parents, there is an additional element  that I want to mention. My Physiotherapist. I have ‘lucked out’ this time in terms of my therapist. My experiences with Physios will be discussed in a separate post, but I want to take time to praise my current practitioner. Hannah is approximately my age. She is gentle, she asks considered questions, she definitely listens and remembers what you’ve said and, very important, she’s not in a rush. I see her monthly – not weekly. She double checks my details and she is understanding about real life. I have not been given exercises that need equipment I don’t have or I can’t afford or fit in my house. I’ve not been chided for getting things wrong, having problems or forgetting things. I’ve had very stupid questions answered. And I’ve been treated as a human being, and not a piece of broken, naughty meat.  ‘Bedside Manner’ is very important when dealing with pain filled people who may be fragile and who are most definitely suffering, even if it’s just from a stiff toe. It has made a great difference to me at the is point – I am at a low, and could easily give up on the daily list of movements – but I have not, and part of that has been due to the way I have been treated by Hannah.

Hannah is an NHS practitioner at a small hospital in West London.

*Not pain medications. These are my first meds of the day – a Prescription mixture of Anti-Depressants, Omeprazole, Beta-Blockers and Vitamins. I have prescription Vitamins – yes, I know. I have Chronic Anaemia and Vit.D deficiency. I had no idea of how horrible anaemia can be until I forgot to take my Iron for 3 days and became breathless. Holy Shit did I feel rough.

Costochondritis – http://www.nhs.uk/conditions/Tietzes-syndrome/pages/introduction.aspx – trust me to get a condition that can only truly be solved by not breathing.

 

We had joy, we had fun, we had seizures in the sun…

Non-Epileptic Attack Disorder – just rolls off the tongue. This is the polite descriptor for what used to be called ‘Pseudo-Seizures’ and also ‘Hysteric Seizures’. NEADs is an odd thing to have. And from what I’ve been told, very odd and quite entertaining to witness*. In my case, I feel the ‘pressure’ building up in me, and then I have to give in to whatever happens next. I try to get on the floor so I can’t break things, including myself. And then I shut my eyes and things start to happen. I can hear people, but I can’t respond. Sometimes I dribble and jerk and shake. Sometimes I contort in ways I can’t make my body undertake when conscious. Sometimes the episodes are over in 10 minutes, others go on for 45. My head usually jerks like a convulsion. That’s my sign in myself of what’s happening – when I want to jerk my head. It’s not a usual movement for me because since an I had whiplash in 2002 I’ve not really been able to consciously move my head freely. However, I have been told that in seizure I can almost do an owl/Exorcist head spin.

These little known episodes have been part of my life since 2004 and were most likely a response to the stress of finishing University and starting my first job. They are, for me, a stress response. But this does not mean they can be regulated and prepared for. I cannot predict them.When my Mother was dying last year, I did not have them. But in the last months they have returned. And in the last two weeks they have been very familiar – like a creepy uncle. Indeed, in the last week, they won’t leave me alone. I’ve had two today, which is why I’m writing this.

In the early days, the seizures used to reduce my spinal pain, indeed, I used to end up pain free afterward. It was glorious. And then there were the weird visual things that happened during them. There I would be jazzing around all over living room carpet, Mum talking at me and I unable to answer while the Magical Mystery Tour was happening in my brain. Swirly visuals, odd sounds, all my favourite music playing in my noggin and the ability to breathe really freely through my wonky sinuses. Damn, it was good. But now they do nothing but make me feel a bit sick, weak and shaky. I can’t even go straight to sleep after – that was another bonus.

There is no treatment for them. I have Diazepam which has calmed them – can make the ‘pressure’ feeling recede, but it’s not guaranteed. And when I’m having them as frequently as now, I can’t tell if they’re going to happen or if I’m going to be able to control the feeling and squish it down until it passes. I was sat volunteering** on Tuesday when the urge built up and I desperately wanted to jerk my head, it was so powerful – wish to smack my head into the desk. I squished it down and down with the result that I felt angry, depressed and exhausted. Today was spent in bed because I felt so flat and deflated, but I have still seizured twice and can feel the weight of an attack on my left shoulder – a little Seizure Goblin. Let’s see what Mr. Goblin does.

NEADs info: http://www.nonepilepticattacks.info/2_what.html

*My family have found them disturbing, but outsiders – friends – have wanted to film them as pieces of Performance Art.

** I volunteer in a Charity Bookshop. The shop was particularly crowded and this impacted on the seizure urge. There was a sick young man pacing back and forth on one spot, and his actions began to make me feel anxious. I must remember this in future.

May Day Madness

O! Joy of joys! The jollity of May Day! A double whammy of shitness came my way today. Some of it actually arrived yesterday, but I must have missed it in my post seizure fuzznangle-brain.

Shitness the First: An ESA1 Form arrived for me. I’ve never had an ESA1 Form before. Apparently I need it because I am re-claiming ESA. Not making a new claim. It’s in a horizontal/ landscape format compared to the A4 portrait format of the usual forms. It may not be the horrible ESA 50, but it still caused me to panic and feel shit and horrible and useless and worthless. All at once, in a flash, like magic! That’s the wonder talent of the DWP: they can make you feel 100 negative things all at once. I’ve never done Heroin, but I imagine that the feeling you get from contact with the DWP is like Satan’s Heroin – it’s all deep, deep, complex lows. And for some reason they also sent me a Housing Benefit Form, for no reason. I’m going to have to hide that f*cker from my Dad as he’d love to play with the DWP, and I just don’t need the stress of him. I have until the 27th of May to get my ESA1 form and a Sick Note from my GP to the DWP. Let’s see how this works out.

Shitness the Second: Out travelling in that London. First time I’ve been out for my own selfish purpose in a long time. I last saw an exhibition in January* and I decided today to see a show and visit some churches** in far flung Hackney. On my way home, walking down a very empty road, I got hit by an American football. You know, those odd, rugby ball-like things. I saw the man with it ahead of me across the road. I was the only one on my side. The threw it at me and smacked me in the right arm and hand. Hard enough to make me drop my bag. He was with company and ‘apologised’ – the “sorry, sorry” of a dickhead. He wasn’t sorry, he threw a ball at the only person on the street in the middle of the day, and he managed to hit them. If he’d hit my head and wrecked my glasses, my response would not have been a shocked “What the fuck?”, a glare and a walk off. Of course, he doesn’t know that by the time I got home my arm was stiff and my hand and wrist sore, and that tomorrow I will most likely be even stiffer. My neck is already clenching up. Great. Apart from the actual physical side effects of being hit, the worst part for me was that I saw the man with the ball, and I tried to make sure I was not hit. Just like at school etc. etc. I was bullied by an arse with a ball. History repeating. I have to see my GP this week (for above Sick Note) and I’ll be mentioning this little incident. It’s these little things that annoy me, because they make me sound like a whiny hypochondriac. Being hit by balls, tripping over cracked paving, being walked into by people on phones, smacked in the ankles by buggies: these genuinely cause me physical problems and discomfort, but complaining about them makes me sound like a comedy old fart from The Simpsons. And I know it. Grrrrr. I’ll just get the cough drops and start complaining about The Youth Of Today.

* Exhibitions have the ability to make me love life at times when it really seems unlovable – like rubbing the soft ears of a dog you keep threatening to take to the vet one last time.

** I studied Architectural History as part of my degree and I love Pre-Victorian buildings. I’ve not seen all of London’s interesting churches, but when I’m in an area, I try to fit at least one in. I can recommend St. John-at-Hackney for sheer surprise. The outside has amazing ranks of tombs and the interior… well, that is the surprise. I love Post-Victorian buildings too – it’s just the Victorians that make me uncomfortable. I did try to love them, but, well, I can’t. http://www.stjohnathackney.org.uk/