Krakatoa

When the volcano on the island of Krakatoa exploded in 1883 it killed approx. 36,000 people via Tsunamis and made what is considered the loudest sound in modern history, being heard 3,000 miles away. When I opened my post this afternoon (we don’t seem to get it in the morning any more) my brain tried to give me a similar experience (but with fewer deaths). I’ve been fighting my way through the ESA process for months. Most recently working my way, very slowly and with much anxiety,through the ESA50 form. I’ve sought outside advice, I’ve found an Advocate, I’ve written to my GP, I’ve called the DWP to tell them my ESA50 is going to be late (because it took so much time to find someone to give me advice face-to-face). In consequence of this I’ve had Migraines, Headaches, Chest Pains (Costocondritis, Palpitations…), IBS, Acid Reflux, Seizures and Nose Bleeds. I’ve begun Hurting myself – cutting, Over-eating, Under-eating, Sleeping for days, not Sleeping at all. I’ve been Depressed and Hyper and Tearful and Suicidal. The only things I’ve not been are Pregnant or Dead*.

Today I got a letter reminding me that I need to get another Fit-Note, as mine runs out on Tuesday August 2nd. The letter is dated July 27th, I got it today the 29th, a Friday in the Afternoon. My GP is not open until Monday, which is the 1st. I don’t think I need to explain why my Brain went a little Krakatoa on me. I phoned my GP and tried to talk to the Surgery Manager who organised my Fit-Note last time. I’ve left him a message. I really hope that on Monday I’ll call the Surgery and they have my Fit-Note or can make one really quickly so I can get it to the DWP in time. They’ve sent me a pre-paid envelope, but it’s Second Class and I know from experience that it won’t get to them for 3 days at the earliest, so I shall have to pay for it to get there sooner. I know it’s my fault that I’ve not got a new Fit-Note. I’ve noted on my Calender all the days I have to do things in advance – so 5 days before I have a deadline, I write a note saying ‘X has to be posted’ etc. But I’ve not done it for the Fit-Note. I was frantic at the time I got it – trying to get it in time. And I relaxed after I’d sent it off, so I must have forgotten to make a note. So now I’m frantic again. Dealing with the DWP keeps me in a constant state of Frantic. If constantly worrying about Forms, or Doctor’s letters or Advocates and Proof, proof, proof. Proof I’m Wonky. Ill. Wrong. The Abject**. Rather than living or trying to plan on living a life, a different, useful, Future-life, I’m constantly trying to prove the basic sad facts of Now-life ~ the brittle, badly formed, stale biscuit base on which I want to build a delicious, Happy Cheesecake. But if I’m always concentrating on the stale stuff, always concerned with the bottom, how will I ever develop the top layer?

cold dark matter.jpg

‘Cold Dark Matter: An Exploded View’ mixed media, 1991, Tate. By Cornelia Parker (b.1956)

The above is how my head feels at the moment. How my heart and life feel at the moment.

More information about ‘Cold Dark Matter’ – which is a shed Parker blew up with explosives: http://www.tate.org.uk/art/artworks/parker-cold-dark-matter-an-exploded-view-t06949 – Sheds play a big part in my life. At one time we had 3. Now we have 2. A vast storage shed, and a smallish one that Dad set up for doing work in. But they’re both just full of stuff. You can’t get away from sheds in my life.

*I’ve dreamt of being Dead before. I’ve never dreamt of being Pregnant. I think of killing myself a lot. I really mean a lot. But I’ve not thought of having Babies.

** When I was at University we had to study the Abject in Art. In this case it involved blood, dead animals and shit – things that repel and repulse us (but are ‘of’ us). My Tutor told us that in the future people with Genetic abnormalities that could not be cured with stem cells or genetic manipulation would be considered Abject, because they would be the rejected of society – something humans would be repulsed by because of their similarity and difference to them, and because that difference could not be ‘fixed’ by human endeavour. He said a lot of other stuff. Of course he didn’t know that I had just been diagnosed with EDS and that he was basically calling me a reject of humanity/society. He also could not know how it would affect me – it contributed  to my having a breakdown.

Save

St. Peter Martyr

I’ve had a Headache for 5 days. I’ve done the Physio, taken the pills, taken Laxatives and Migraine tablets and muscle relaxants (Diazepam). I’m Hydrated, I’ve slept well. But the Headache won’t shift. Last night I had an odd and new experience – I got the urge to smash my head against the wall in a bid to get rid of the pain. Almost did it but the sensible calm bit of me stopped me. I’ve lain on a cold floor, I’ve had showers (hot and cold). It’s still there. Over my blind right eye and into my face (at the moment). Last night it was at the back of my head, like someone vast and powerful was crushing where my head meets my neck. Stress is involved (thank you ESA50 and the DWP), and the changing atmosphere and weather. But knowing doesn’t help. All I want to do is sleep or frantically do ‘stuff’, which I can’t control (yesterday it was cleaning and shelving books – I couldn’t stop myself). Eugh. This is how I feel: peter martyr.jpg

This is a detail of ‘St.Peter Martyr’ by Carlo Crivelli (1476, Tempera on Poplar wood)- an Italian Renaissance artist I really like. Highly stylised but also stylish and interesting. We’re very lucky in the UK to have a lot of his work – full image and info here: http://www.nationalgallery.org.uk/paintings/carlo-crivelli-saint-peter-martyr

The knife in the heart is also apt as I’m suffering from chest pain. I have 4 things that  cause chest pain – Acid Reflux, Costochonditis,Scoliosis and Hypertension. At the moment I have no idea which of these bastards is doing it. I’ve had a lot of Acid Reflux, but I think all four are working together. So at the moment I have ‘Active’* pain from my head to my waist. Life is fun. Eurgh again.

*New pain, not the background, constant , chronic pain, I call ‘Active’ pain. Like a Migraine or a cut.

Addenda, addendas, addendat…

…. I didn’t do Latin, but I like f*cking incorrectly with words. I was 10 before I could read, and I still have trouble, but most of my friends are very talented with words and languages, writing and such – in fact I seem to collect wordsmiths, songwriters and poets. I’m drawn to those with skills I lack, and envy. But I envy in a good way – I would never take their talent and ability from them. I’ve never been like that. I enjoy it, and wanting it is part of my enjoyment.

This is just an addition, sort of, to yesterday. Today I went to an ENT appointment I’ve had for a long while. I waited 2 hours to see my specialist, by which time the man was a manic speed daemon in speech. But it was ok. Why? Because my condition SSCD (Superior Semi-Circular Canal Dehiscence) only has 2 answers: surgery or nothing. And I was more interested in giving him information. You see the SSCD is a New Condition – it’s one of the New Conditions I’m using for my ESA50 form and claim. When I mentioned ESA to the Specialist (from now on the MR) he had never heard of it, or the DWP. I had expected this, and came prepared. I wrote out 2 sides of A4 explaining how this New Condition affects me. I told him I wanted him to read it and I wanted it to be put in my file. Why? Because the next time I visit, I may see someone else, and I want my account of my life with one working ear on record. I don’t want to have to explain again and again, and I don’t want the next MR to have any f*cking excuse to not know what I’m talking about. I also told him I wanted him to mention what I had written in any official letter he wrote to me in future, so I could send it to the DWP. He asked me to mark the relevant passages (‘cos you know, he has 10 years medical experience and can’t process 2 sides of A4 that affect a life) which I did. I’m hoping this will serve me well. I’ve done all I could.

But back to Surgery or Nothing. My condition is the rarest I have. 0.01% of people have it. When I last saw the MR, he said that surgery was not a good option. Not Very Successful, and means taking bone from somewhere else in my head to plug the hole above my Semi-Circular Canal. Usually it comes from your jaw. It means a lot of scarring. Scarring and surgery for EDS people is BAD. We are told not to have facial surgery (cosmetic) because of it. Having cuts in the jaw to remove bone… bad. Now, I’m going to be very honest with you people. I am not a stunningly beautiful female. I have an ‘interesting face’. But forgetting features (big nose, small mouth, and wonky squint eyes) I have bad skin. I had Chicken Pox age 2 and still have the scars, I’ve had Acne since I was 11 (still do: hello boils, hello cysts) and I have even more scars, discolourations etc. So I fear cuts. I don’t heal well (I bled through my tiny tiny Gallbladder cuts and have a massive 6″ Appendix scar from 1990) and the idea of having a Keloid* monster on my jaw, another on my skull behind my ear, and the real risk of the graft not taking in my skull…. well you may imagine. This time they thought the Surgery was Very Successful. Hmmm. Why? Well, I’ve been here before. I’m a Cynic, I admit, but from experience. You see, surgeons and specialists love rare people. They love the chance to play with us. The more people they get to chop up and stick together, the more they learn about their specialty. And I have rarity on rarity. I have the 0.01% ENT thing, and I have EDS too. They don’t get many of us to the pound. I am the chance to play.

The operation is not time sensitive – I told them that I needed time to think about things. They are going to send me an appointment in the future. I may consider the operation in the future, but not yet. I am still recovering from my Mum’s death.I don’t have one clear, finished room in my whole house**. I am fighting to get ESA and my physical and mental health problems recognised. I’m doing physio every day, get seizures every 2-3 days, migraines every week… It’s not a good time. The last operation I had was in 2000. Last time I was hospitalised with illness was 2012. And the major difference would be the lack of my Mother. I’m not going to lie. My Mum knew how to keep me going and get me well – her intuition of what I needed and when was magic. My Dad does not have this. I could not face having an operation with him having to look after me. Not yet. We’re getting closer, but it would not be possible for him to help me get around and get well yet.

Laughs

I have to add this: when I got home I had an e-mail from the hospital asking me to rate my appointment experience because ‘patient feedback is important to us’. So where do we begin – 2 hrs wait in a room with no windows and no clock, with no information of waiting times on the board to see a MR who spent a total of 7 minutes talking to me, telling me of an operation but not it’s details*** and complaining how he wasn’t going to get a lunch. He didn’t even close the door of the appointment room. Nice. Oh, and he didn’t mention how last time he saw me he sent me for a test I’d already had and that he had the results for in front of him… nice attention to detail MR. I wanna rant about how if people like me send a DWP Form in late we get f*cked up the a*se, but he can miss a whole file of test results and it’s fine. But I’m not gonna. I’m better than that. And more than likely more tipsy than him. And that is fine indeed.

*Keloid Scars: http://www.nhs.uk/Livewell/skin/Pages/Keloidscarring.aspx

** When my Mum got sick, my Dad destroyed the house to re-decorate. The living room was painted, all the halls and the second bedroom. The bedroom is now lined with oak shelves and books and has a massive TV, sofabed and carpet. The Living Room now has it’s shelves, a makeshift Ikea sofabed- bought for visitors when Mum was sick- and lights. The rest of the house is a mess. All the stuff from everywhere is inside of it. My room is a death-trap. We’ve done a lot, and thrown out a lot, but it takes time when one of you is over 70 and the other one move like they are.

*** I found out details from the web. American health sites are better and more advanced – partly because people there pay for their treatment. Use them for research, but don’t think Private Care is better than the NHS. I’ve had both. The NHS is better. http://otosurgery.org/sscd_surgery.htm

Writing for yourself

I’ve not been writing , because I’ve been writing – same purpose, different arena.

Last Monday I had a GP’s appointment that was like a throw back to the 1990’s, but the difference being I’m over 30 rather than a teenager. We  have rotating GP’s at our surgery. For about 2 years we’ve had some lovely young people who are in training. Today I saw a man who could not use the computer system, or the printer, and typed with one finger. There is a place for these GPs, and perhaps if things had come out negatively for me, I would blame it on this chap being old and not up to scratch. However, this GP is old school in another way. He just asked me what I wanted. So I told him. I wanted to report the increase of my seizures and migraines. I wanted him to look at some strange brown marks that have bloomed on my temples* and I wanted him to write a letter for me explaining how my many medical problems affect me, for use with my ESA50.

So he made a note of the Seizures and Migraines, asked me if I was seeing a Psychiatrist – yes (in August). He looked at the brown marks, ordered a blood test. Then he did something could have gone either way. He asked what I had wrong with me – I listed, and corrected (he wrote Ehlers-Danlos as Eires Dunlops). He type the list and then told me ‘You write the letter, send it to ***** (Surgery Manager) and we’ll sign it’.

Last year I was in this exact situation, but I was so insane form grief and fear that I could not write the letter. Last year I had just had my ESA removed (fear) and learned my Mother was going to die soon (grief). The letter didn’t happen, my ESA appeal didn’t happen… But this year, I was prepared for having to write a letter, and also, I was in a completely different mind set – I was furious. Underlying anger was (and is) around. So I’ve spend a week, every night, adding a paragraph in pencil, to my letter. I couldn’t do it all at once. I would suffer mental and physical burn out, and also I would write things in an un-useful way. Too much or too little emotion. Too much or too little blunt, horrible fact. You have to be in the right frame of mind for these things. But it’s better than the GP who doesn’t know me writing it. I don’t know what ***** ( Surgery Manager) will do to or with it. But I’m letting him know everything – even if it makes us both squirm and look at each other differently.

In Addition

Apart from writing, what have I been doing? Cursing the heat, and being very depressed. Heat+ Menses = Sad Bowerman. My emotions have been up and down and side to side. I’ve really struggled this week. Depression, Anxiety and a lovely touch of Suicidal Ideation. All in a bath of sweat. External forces (people) have been a small fuel, but really it’s just me. I have been less fighty than usual with this, because it would impede my ESA letter work. But I have been feeding my brain films. Films really help me. I’m a visual person – excluding reading, which I find really, really difficult. So this week I have watching things I would not usually watch (a delicious, guilty pleasure) and Old Favourites: Thor, Filth, Enigma and Saraband for Dead Lovers. Thor and Filth were new and a delight. The latter has been added to my favourites. Be warned, it’s a difficult movie – mental illness, drugs, drink, sex and suicide. ‘Thor‘ was lovely harmless fluff. Enigma: this came out when I was at Uni, and was on Sky very soon after. When I had my breakdown and car accident in 2002-3**, I sat watching this over and over. It’s harmless, well acted and has an excellent score. Some of my favourite actors are in it. It’s good enough to take me out of myself. Saraband for Dead Lovers is an odd film. A 1948 Technicolor Ealing film, a sad, true love story set in the 1690’s – unusual for films, about the Court of Hanover that would become our Monarchy. It’s a curio, and a worthy one. I can’t watch it over and over, I’ll admit – but it spurs my imagination. The female costumes are accurate and lovely.

*I am incredibly pale, my family is riddled with Cancer – I get odd skin marks, I see the GP. Because I only have one working eye, I can’t see my temple where the marks are clearly, but they are big and dark enough for me to see them with my one eye. It it’s age, c’est la vie – I’m lucky I got here.

** In one month I had a Mental Breakdown, was put on my first Anti-Depressants and then had a car accident that wrecked my neck. I went back to Uni in a neck brace. I survived the year, but could not take the exams, so I had to repeat. I found the situation hilarious – mental and physical wreck, while still attending classes and spending nights watching Sky Movies – I saw so many films and they made my life better. I forget this all the time, and have to be reminded. I don’t drink, I don’t take non-prescription drugs, I watch movies. Hours and hours of pretty, moving pictures.

Filth: http://www.imdb.com/title/tt1450321/ – I’m gonna read the book now.

Thor: http://www.imdb.com/title/tt0800369/?ref_=fn_al_tt_1

Enigma: http://www.imdb.com/title/tt0157583/?ref_=fn_al_tt_2 – based on Bletchley Park.

Saraband For Dead Lovers: http://www.imdb.com/title/tt0040758/?ref_=fn_al_tt_1

A Sarabande by Handel: https://www.youtube.com/watch?v=JSAd3NpDi6Q

Into the unknown: in praise of CAPE

Today I ventured, literally, into the unknown. I visited a local charity for people with Mental Illness to get help with my ESA50 form. I was scared. I went to bed early last night having looked over the form and then woke at 2:50am. I had a shower and washed my hair as I had an early appointment in a strange place. Firstly I went to the wrong address. And then I went to the right address. Dear me. The wrong address is on the nicest street in my area – a place of handmade artisan bread, fresh coffee, wine-tasting and fancy flower shops. The charity has a shop there. They directed me to the other address. The situation of this place IS NOT the charities fault, they are local and I know they have very high demand – there is a major mental health centre a stone’s throw away – a secure centre. The space has been given them by the council, or it’s all they could afford.  So, ok, it’s down an alley. Fine. But the alley is used for massive fly tipping. Massive. It stinks and there was a lot of human excrement around. However, the interior of the charity could not be more different. I only saw one big room that had an old school cafe hatch dispensing cheap tea, coffee and food, there are tables, chairs, couches, board games and two computers. A partition allows people privacy to have appointments with helpers. I had an appointment with a helper called Ade. An advisor rather than helper.

Ade should not have been seeing me. To get help from this very over subscribed charity, you have to be referred by a Mental Health Specialist. I have been in contact with the charity for months, and they know I’m trying to get referred, so they made an exception for me, and allowed me to see Ade. He’s in the centre every two weeks, and he has a queue.

Before I get to the interview I had with him, I want to make an observation. Everyone in the room was obviously very ill. They were all older than me, it was a 50:50 male/female split, but it was definitely weighed in terms of ethnicity – there were more black people than white. Some were in wheelchairs and many were just sitting in silence with members of (volunteer) staff moving around the space and engaging them in conversation. I was there at lunch time, and only once, but this was my observation of the place. It’s not the first time I’ve been in a space like this, but before it was the waiting room of the Secure Mental Unit I mentioned before, where I used to have CBT appointments. Same atmosphere, but less talking.

Ade. Ade was super helpful, and calm in the face of my jabbering (boy did I jabber – 1000 miles an hour, nerves, sweating… gah), gave me good advice and welcomed my contacting him in the future and said he would look through my form. This is the best I could hope for. He was so calm – he showed no shock or disgust in his face or manner. No judgement. He’d be an excellent poker player. And that’s what I needed. A panic block. The meeting did not take long (I didn’t want to take up the time of others) but was not rushed by Ade – it was enough. Many times I’ve gone for help, and been rushed. I realised that I was not ill as many of the people in that room, but when asked by a member of staff who I was, and what I was doing there, my problems did peep out – I got confused, mumbled and forgot things. I was impressed by the staff. The lady who questioned me did so because the charity is a Safe Space for it’s Clients, and Staff. They need to know who they let in. Also, because they are a small charity, they can’t let just anyone in. They don’t have the staff or resources. The same staff member photographed a client’s leg (which had a sore) and took the photo to the nearby doctor, came back and had an appointment for the lady. Practical help. And so immediate – amazing.

So, CAPE: http://www.c-a-p-e.co.uk/ is the charity. It has a shop at 41 Churchfield Road, Acton. I shall be supporting said shop as much as I can. I don’t want those with mental health or any health problems (sores on legs for example) having to walk or wheel through human poo, used nappies and urine soaked bedding to get to a safe haven – the safe should start outside.

Pink Horror! Pink Terror!

I have been meaning to write. I’ve a backlog of drafts – but I’ve not been well enough to sit up and write for long enough. I’ll detail all the horrible stuff at a later time, just as a list, because part of this endeavour is just to note all the things that happen with my body so I have a record for reference. Today’s note is about the ESA50 form, the ‘big’ Work Capability form. Mine arrived 2 weeks ago. I’ve been arranging to get help to fill it in, which is why I’ve not begun on it yet. I have an appointment with an Independent Benefits Advisor tomorrow, which was only confirmed today. This is fine – it’s a charity and I know I’m very lucky to have help nearby – they have fitted me in. I’ve not seen a benefits advisor before – but after last years failure, last years ESA nightmare, I’m trying to get as much help as I can, as is advised by every Disability charity.

So, I screwed up the courage to look at the form. Forms terrify me. I’m not going to lie, they ramp up my stress and anxiety levels. I really have to MAKE myself look at them. Particularly forms with deadlines. This has a strict deadline. You get a month, and it takes that to get everything in order. I’ve been working on my ESA claim for 7 months – getting help takes organisation, persistence and patience. The qualities that I had before I got hit with a physical and mental kosh, but don’t have now. Indeed, if I had them, I might be able to get a job. So, I look at the form and I realise I’m having a really tough time reading it. Really tough: most of the form is printed in pink ink on greige* recycled paper. Good on the recycled paper. But the pink… it’s all the same pink, but different tints – so lighter bits and darker bits. It’s all the same font, but different sizes. Shit. I can’t read the damn thing. The words and boxes are moving around in front of my eyes. It’s like herding cats. I have been having migraines and seizures (hence not writing) so I know my brain is a bit rattled, but I’m trained to look at pictures etc. Seriously, that was part of my degree – I’m trained to decipher marks – I’m really good at ambigrams** etc. But f*ck me if I can look at these pages for more than a few seconds before I feel dizzy. It’s not just stress.

I’m hoping my visit tomorrow will help. Even if the Advisor just confirms that it’s not just my stress that is making me blind to the form. I’m also going to look at some online advice from Benefits And Work*** as they are a solid group of people. I may even call the DWP and ask for more time on the form. I won’t be able to write everything I need to write in the small boxes and may have to type/dictate and print out things. Also I have photos of self-harm to add and also an illustration of some of the less pleasant elements of my condition to organise – I can’t find a medical illustration of ‘Self Evacuation’ on the web that matches what I have to do. And I think it’s important that whoever deals with my claim shares my life experience as closely as possible. I want them to try and fill my size 10 orthoses**** stuffed trainers as fully as possible.

Something nice to finish with: since before my Mum died, my Dad has been frantically destroying and re-building the house. We created a ‘book room’ from one of the bedrooms: lined with bookshelves, a media unit with a nice sofabed. Now we’re just, just on the edge of finishing the living room: more shelves, media unit. And this week my very kind cousin and his lovely son came over and tended to our garden. They cut down a massive Bay Tree which now allows so much light in the garden. Most of the house looks like a hoarders paradise, but we have two lovely rooms. I can’t do much physically to help – I used to. As a kid I helped paint the house etc. I planted most of the garden as a teen. But I am going to help by encouraging my Dad to do what he has planned, and helping make decisions and visiting building suppliers etc. even when I’m feeling rotten. Because it’s all I can do for my Dad.

*Greige – grey/beige colour.

**Ambigram: https://en.wikipedia.org/wiki/Ambigram – famous ones are found in the film ‘Angels and Demons’ based on the Dan Brown book. John Langdon is a master: http://www.johnlangdon.net/#ambigramshttp://www.johnlangdon.net/#ambigrams – he made those used in the film and the lead character is named for him. I’m not a big fan of Brown, but I admire a good Ambigram or any exciting calligraphy.

*** Helpful group, worth the subscription money: http://www.benefitsandwork.co.uk/

****Orthotics: “an externally applied device used to modify the structural and functional characteristics of the neuromuscular and skeletal system” – mine are like this: Custome-made-orthosis.jpgI have flat feet, one lax ankle, one frozen ankle and I pronate. The above is not my foot, it’s an image taken from the internet. I wish my feet were so happy. I’m actually a size 9, but I have to buy size 10’s to fit the above in. Also I have to wear shock absorbing anti-pronation trainers to walk, because my flat feet and hypermobile knees don’t absorb shock energy, so they get damaged in shoes that don’t help. I’ve only been able to walk since I was 21 and got these things in order. From 12-21 I could barely walk at all. My left leg and foot atrophied, didn’t grow and I developed one big leg and a limp.

Viola tricolor

I planted some today. I’ve not had Pansies in the garden before. I was on an Adrenaline high. It was extremely stupid because now my shoulders are tingling and aching alternatively. The burst of doing was brought about by two things: I went to the Funeral of my neighbour, and I got a letter from Jury Selection saying I have had my duty deferred. I am very pleased about the latter, and sanguine about the former. I am an old hand at funerals, and I was just glad the family were ok. Two couples used to live next door – Brother and Sister and their Spouses. The Sister died aged 87. She was always very kind to me and I was very fond of her. Her husband died some time ago, so now just the Brother and his Wife live there. The Wife’s brother died last week, so she’s having a bad time. I sent her some flowers and in a fluke they arrived on her Birthday. I’m glad about the Jury Duty because I would not want me making important decisions about my life and freedom. pansy-mfa.jpeg

Embroidery of a Pansy from the Layton Jacket, silk on linen, circa 1610, to be found in the Victoria and Albert Museum, London: http://collections.vam.ac.uk/item/O11095/the-layton-jacket-jacket-unknown/

2006AL4580_jpg_l.jpg

The Jacket in Action: Margaret Layton by Marcus Gheeraerts, oil on oak panel. 1620. Also in the V&A. The copyright of this image belongs to the V&A.

The Hell of Everyday

For the last few days – since my ESA money came through last Friday, I have been trying to write, as I have had basic things to document. But I’ve been so fucking tired I’ve not been able to. I’ve started pieces and then given up. Deleted words in a fug of odd feeling. Trying to keep the thread in my head from knotting has been impossible. There have been the basics to note: money comes through, Migraines, Pain, Sleep, Seizures and Diahorrea. And then there have been more subtle happenings: my fear at spending the money I have – I had forgotten what it was like to be able to commit to a purchase over £15 without being scared. Ordering flowers for my Neighbour’s Funeral, with flashbacks to doing the same for my Mother. Practical problems with building work, and contemplating a negative future if my Dad is found to have Cancer.

I last wrote 6 days ago, and since then I have experienced so much, or feel I have, that it feels like a much greater time. I feel compressed and so sore, so tired, as 2 days after an operation when the floaty feeling of analgesia has worn off and the bruising has really set in.

In those 6 days I’ve gone from having 40p to my name, to being able to re-stock my store cupboard of ‘Things That Make Life Work’ – Co-Codamol*, Folic Acid (which helps me absorb Vitamin D), Cetaphil (a wash for sensitive and Acne prone skin), setting powder (I have to use this in conjunction with foundation to cover my Acne – my powder costs £4), and plastic travel bottles so I can have small amounts of Gaviscon in my bags. When I first went to purchase items in a well known Pharmacy, I was so anxious I could not believe it. I added everything up and it was above £20. Could I afford it? Yes. And it would all last longer than a month, so if I lose my ESA, I’ll still have these things. They are an investment**. My biggest expenditure is on over-the-counter painkillers and foundation. I have fair, badly scarred skin that is very sensitive. I can’t buy high-street foundation. I really wish I could. But I can’t go out without foundation. And when I say ‘can’t’ I mean it. I’ve had Acne for 25 years. I’ve not left the house without coverage for all that time. I can’t look people in the eye when my cysts and scabs are ‘natural’. And I certainly can’t look in a mirror. We don’t have many mirrors in the house. One in each bathroom, and a small one for my make-up application. I take my glasses off before I apply the first ‘coat’, and only put them back on when most of the damage is covered. I used to use my Acne to self-harm, so I’m a mess. When I am low I can spend hours attacking my face, making infected lumps. The make-up does not aid this negative behaviour, as many people think, it just aids my having a normal life sometimes. I’ve not bought a foundation since February, and I’ve learned how to dry it down so it doubles as a concealer – so I’m as thrifty as I can be with it. As you can see, I’ve learned to price and ‘justify’ everything. Now I have my necessities.

In addition to the above I ordered flowers for my Neighbour’s Funeral. Eileen knew me when I was a bump. The family – two couples, a Brother and Sister and their Spouses – have lived here since before my parents bought our house. Eileen and Charlie, the Brother and Sister, are old school Cockneys. When I was young, they lived there with their partners, some children and their Mother. The Mother died, the children moved out. Eileen’s husband died, Eileen got dementia… Eileen did not have children, and she had a soft spot for me. She bought me my first grown-up perfume and a real pearl bracelet. I was very fond of her. Her death was not a surprise. The whole group are keen gardeners, so I made sure I ordered a Summery arrangement for her – no lillies or gerbera***, but soft flowers with scent – peonies, blown roses and freesias. I also ordered a bouquet for Pat, Charlie’s wife. Pat’s brother died last week, suddenly, and after Eileen. So much sorrow in such a short time. Pat and Charlie have always been there, next door. The family re-built our garden in the 90’s, and were very kind and understanding about everything we did as kids. And also very supportive when Mum was ill.

I got money, and was scared of spending it. I had to order flowers for a Funeral. And tomorrow I have to go to the hospital with my Dad to begin investigations for Prostate Cancer. You may recall that my Mum was diagnosed in May last year with Terminal Lung Cancer. She died last October. My Dad will be sitting in the same clinic 14 months later. He was last checked 5 years ago, and had Pre-Cancerous cells then. Two men in our family have had Prostate Cancer, and one has Bladder Cancer. They are all still alive. They say it’s 1 in 4 don’t they. Hmmm.

All of the above has created a mass, slag heap of Anxiety that seems to be weighing on me. A contained force, an un-exploded explosion that has expressed itself in Itching, Seizures, Migraines, Headache, Earache, Palpitations, Blood Pressure fluctuations, Torticollis, Diahorrea and extreme Fatigue. To name a few. I feel like I’m boiling or erupting, that there will never be enough sleep. And I can’t eat properly either. I’ve given myself 7 days free of the DWP. 7 Days from last Thursday, to not be fighting, but just living. Just buying Vitamins and Painkillers and Funeral Flowers.

gruen.jpg

The Temptations of St. Anthony by Matthias Grunewald. c.11512-16. Part of the Isenheim Altarpiece: https://en.wikipedia.org/wiki/Isenheim_Altarpiece – this is how my Anxiety feels, this is how my Body and Mind and everything else feels at the moment.

*Paracetemol and Codeine available over the counter at Pharmacies. I have a prescription for a stronger form of this – Co-Dydramol, but I choose to save that as I only have a limited amount and don’t want to waste it on average pain.

**My face powder is bought over the Internet – £4 for at least 2 months is good value – cheaper than a McDonalds. I do not have my hair cut or dyed. I do not have a manicure, I never have. I don’t wax, or shave, or tan. The money I spend on myself is just to keep me going – like putting oil in a car. I am not an ascetic – don’t get me wrong – but I don’t have enough money to be frivolous. Also, I have to live the life I’m given, and that has a budget. To get used to a different way of life would be stupid and lead to anger.

*** I find ‘architectural’ flowers annoying. The scent of Lillies is too strong for me and Gerbera are boring and everywhere. This is just my opinion. I am picky about flowers and I want them to smell. If I could, I’d have a bouquet of stocks, old roses, freesias, large carnations, peonies, delphinium and candytuft for shape. I love the smell of stocks, freesias and carnation – dry and spritely, I also love herbs. I’ve just had planted purple sage and heartsease and myrtle in my garden, along with copious lavender.