More, more DWP. If ever lover were as attentive to me as I to thee, DWP, I would in ecstasy forever be. Double whammy today people. 1) Answerphone message from Belfast confirming my ESA, I should have money by Friday. 2) Capability for Work Questionnaire (ESA 50) on the table waiting for me, dated June 27th.

Now, let us get this clear:

  • June 22nd: I phoned the DWP as I knew they’d received my ESA1 form on June 2nd and I’d heard nothing , was told to send more medical evidence.
  • June 23rd: Got E-mail confirmation of ESA.
  • June 24th:  Got Text message from DWP asking for ‘Fit-Note’ (that had already been sent).
  • June 27th: ESA 50 posted to me by DWP.
  • June 28th: Got medical evidence scanned and sent to DWP
  • June 29th: Got answerphone message confirming I’ve been awarded ESA and that I’m going to be paid. Also received ESA 50 form.

So, can you see something wrong here?- they sent me an e-mail confirming my ESA before requesting more medical info, then sent me the ESA50 form before receiving my medical evidence, and then confirmed my ESA again via answerphone message. This means I suffered anxiety about sending my Medical evidence for no reason – they had sent the ESA 50 form before getting my proof – so the first E-mail I got for them was correct and the Text asking for more evidence was unnecessary. I am glad I sent them the medical evidence  I did, but the order and manner in which the above happened is confusing. Also it caused me great distress – I had a stress nosebleed and terrible Tinnitus as a result. I also didn’t know what to believe – which form of communication was to be trusted.

Today I went back to the Job Centre to collect my medical letters and evidence. Again, there were few staff. The lady I saw Yesterday and to whom I gave my documents was absent. I was told to come back later, which I could not do. I asked if she would be in  tomorrow, but was told she was going to be away and might also be away on Friday – doing training- and there was no one else to help me. I know that the lady in question was not in charge of scanning documents – she told me – but I have to get them back from her. I was very angry and frustrated when I left the JC as was my Dad who had made a special trip to take me to it. And I don’t trust the JC/ DWP with my primary evidence. Nothing is ever easy and it never seems to end. However, I am going to give myself a very short break – a week. If my money comes through I’m going to treat myself – to a new document box. I bought one for my ESA based documentation, but it’s already full. I believe I am going to accrue more paper in the next weeks or months, and I find it easier to have a box to put it in. I also have a back-log of paper – cards, notes etc. from last October-November when I was organising my Mum’s Funeral. I have people who need a response, and who I’ve not been able to give my time as I’ve been too wrapped up in the DWP. I may also treat myself to a new Audiobook. I love history on Audiobook. Audiobooks are incredibly useful to me. Indeed, they are essential to my mental health and well-being – they block Tinnitus and keep my brain occupied when my body is unable to do anything but lie down. They distract from pain – being soothing and informative, like a good lecture. I still buy mine on CD as I don’t have modern technology available. I buy as much as I can second hand via E-Bay or Amazon. This does not just apply to CD’s but most things. Only my underwear and shoes are brand new.

The title of this post is taken from a Pulp B-Side ‘Ansaphone’:


Peg Woffington in bed, suffering from Paralysis. Oil on Canvas, c.1758, Unknown Artist. National Portrait Gallery, London. Copyright belongs to the NPG. Margaret ‘Peg’ Woffington (1720-1760) was a famous Georgian actress. In 1757 she collapsed on stage while playing Rosalind in ‘As You Like It’. From then on she was paralysed and confined to bed. She had been painted many times before – and the above was her final image. It is an unusual portrait not just for it’s subject, but also it’s ‘honesty’. Peg is 38 years old, but her face looks older and communicates a ‘blankness’ – her nothingness or physical silence as an ‘invalid’, just as clearly as it would have communicated her personality as an active actress.


Scanners (not the movie)

Yet another DWP update. Not very exciting. Again, just to keep track of what is going on. As you may recall last week concluded with my being Very Confused as to exactly what the DWP wanted from me, and what my ESA status was. I had planned on going to my local Job Centre and getting sundry letters scanned and sent directly to the DWP. I wanted to do this on Monday (Yesterday) but after exhausting myself on Sunday, Monday was a ‘Horizontal’ Day – and not in a sexy, continental, 19th century way*. I went to bed early Sunday night, woke at 7am Monday, went back to sleep, woke up in the afternoon,  got up and felt very odd. Woobly in the head. I ended up having to sleep again, and on the floor until late last night. When I got back up to bed proper I could not get back to sleep due to Jiggly Leg, Tinnitus and Bastard Neck**. So Monday was a Fail. However, I managed to get to the Job Centre today. It has changed a lot since last I was there. The reception area has gone  – the space is now just clusters of desks  and screens and groups of foamy seats. There is no clear signage – I had to find a member of Security Staff to tell me where to go. I was lucky there was not a queue of people in front of me. All the desks were empty – it was about 12pm, so lunch time – and I feared a long wait. Though the wait did not happen, there was still a problem. It’s obvious that they get people like me coming in all the time to get letters etc. scanned. And it is also obvious that we come in unprepared. We may have our documents (in my case 4 medical appointment letters, 1 ENT diagnosis letter, 1 2-page Physio report with a Pain Management referral and 2 pages of Self Harm photos) but that is about all we do have. The Lady on the Phone told me to go in, and that they would know where to send the images. But this is not the case: does it go to Belfast? Does it go to Glasgow? Which department does it go to – New Claims? Well, we decided New Claims (ESA) Belfast. However, the scanning could not be done there and then: there were a stack of documents that needed to be scanned. Could I leave them and come back later? No. I would have to come tomorrow. I did not want to leave my documents – I had taken photocopies of them before I went, but I need some of the appointment letters in the next weeks – I really don’t want anything to happen to them. The very nice lady who dealt with me (and who seemed to be the only member of staff present excluding security) could not give me a receipt for my documents. They were put in a clear plastic wallet and piled up. I have no proof that I gave them in to the Job Centre but this post – my word. I find it horrible that I have to think like this. Horrible that I am having to be so cautious and suspicious. But I am. I have had such harrowing and confusing experiences with the DWP that I don’t trust them with my letters – the proof of my situation. I am very lucky – my Dad used to work from home, so we have a photocopier. It’s an annoying machine, but vital for this type of thing. If I did not have one, I would photograph my letters, but if anything did happen to the originals, this would not be much use in the future – for my actual appointments. I don’t trust the DWP to be fair. The fact that I got an E-Mail on Thursday telling me I had the ESA benefit, but a Text on Friday giving me a message about a Fit-Note they already have makes me conscious of, if nothing else, potential cock-up on their side. Theoretically, E-Mails and Texts are more direct and efficient than letters – particularly the automated letters the DWP so commonly send. But if the E-Mails and Texts are just as standardised, general and automated as the letters they replace, they are no more efficient, and the system is just as susceptible to mix up and confusion as it ever was.

I am hoping, really hoping, that I shall return to the Job Centre on Wednesday, and pick up my letters. That I will get some confirmation that the DWP have received the scans. And that, soon, I shall get some money. This is the first time I have mentioned receiving the money (I think) . As stated before, my Dad supports me. The last time I was awarded a benefit (many years ago) the next working day after I was informed, money was in my bank. And very grateful I was. This time has not been the same. I got the confirmation E-Mail last Thursday, and so far (4 working days) I have received nothing. Usually, this would not be a problem. But this month has had extra expenses – I have had to replace underwear and tights. Being tall, I can’t buy my tights cheaply – I have to buy them in a special shop and they cost £6 for 3 pairs. My underwear was £7 for 5 pairs. I know, so high end – combined they equal 4 or 5 cups of coffee from a chain. However, this extra expense has made a dent – I currently have 30p in my bank. I have an overdraft facility, but I have not used that in over a decade. I truly hope the benefit award given me last Thursday will be confirmed: I don’t want to ask my Dad for money for July, when I told him that this would not be necessary. We are facing potentially difficult times*** and I don’t want to rock the boat.

*’Grande horizontale’ was the title given (in French) to high end call girls – Courtesans. I am ‘grande’ (being a large lass) but not in the French sense of status – great or high. Far from it. I would be a rubbish Courtesan – being as elegant as an elephant on rollerskates. Though I do have the pale complexion and dark rings round my eyes of someone with Consumption – associated with Courtesans in the modern mind via the story of the La Dame aux Camelias and La Traviata – the story of Marie Duplessis .

**’Jiggly Leg ‘- the skin on my legs gets super sensitive and they jolt around until comfy. The knees are particularly bad. Tinnitus- the ringing in my ears seems to drown me. ‘Bastard Neck’ – Torticollis, a hot, tight throb on the left side of my neck going into my shoulder. So powerful that even if I lie on my back my neck won’t relax.

*** My neighbour died last week, and we have her funeral next Thursday. This Thursday we are having shelving and other things fitted in the house. Next Wednesday my Dad has to attend a Cancer Clinic for a Prostate check. 5 years ago he had pre-Cancerous Cells, and has not been checked since.

kitty fisher hone.jpg

Kitty Fisher (1741-1767) by Nathaniel Hone, Oil on Canvas, 1765. National Portrait Gallery, London. Image Copyright belongs to the NPG.

Kitty Fisher was a famous Courtesan in 18th Century London.She was witty, audacious and glamorous. She sat to Joshua Reynolds repeatedly and her portrait in print form was much sought after. Casanova wrote that she ate a 1000 guinea note in a sandwich. This is a favourite image of her for me, because I like the visual reference to her name  in the cat fishing in the bowl and her very direct gaze.

Austerity Bites

The ‘Austerity’ measures taken by our Government are in breach of our Human Rights, according to the UN:

If you are disabled, or need support/ to be enabled, and you live in the UK, you already know this. You live it. You count your pennies and hope to have enough money to eat and buy all the extra bits and pieces you need to make life work. You hope that you’ll get the support you’ve applied for from your Council – the travel pass, or adjustments to your home. You hope that the charity you’ve applied to for help will have enough resources to aid you. You hope your benefits won’t be cut, you won’t be sanctioned, there won’t be a cock up that means that your payments are late and thereby everything falls apart because you have no safety net – no extra money, no extra anything. You feel fear so regularly that when you aren’t feeling it, you wonder what is wrong. When things go right for more than a week, you get worried, because you know, you know, it can’t last. And this is in addition to living with, experiencing whatever is actually wrong with you. This is in addition to taking 14 pills a day, in addition to the physio, in addition to pain, the tiredness, the inability.

I wish the people who make laws for us, who make decisions for us, would walk a mile in our specially made shoes, or ride a mile in our wheelchairs. Spend a day with our twisted feeble hands, permanent pains and inability to wipe or feed ourselves. I’d like to see that. I’d like to see  them try to navigate our world without PA’s and cars on call. It may not make them change their opinions, but it would make excellent TV.



Confusion! Panic! DWP Update!

Wednesday was officially 14 working days since the DWP got my ESA1 Form so I called up the DWP to find out what was going on. When I eventually got through (10 minutes on the Vivaldi Loop of Doom) the very nice lady I spoke to told me my Claim should be ‘actioned’ by ‘close of business’ that day, but that since I had previously claimed ESA and been found Fit for Work, it may have been given to a ‘Decision Maker’ to look at. This spread chills down my spine. The term ‘Decision Maker’ is terrifying for me. Genuinely – just writing it now, my stomach turned over and my vision went weird. The ‘Decision Maker’, that anonymous beast,is they who found me Fit for Work last time*. The lady on the phone asked me if I was claiming for a new condition and if it was on the form. I was, but it wasn’t (I didn’t have a diagnosis when I sent the form in) – I asked her if she could make a note of it on the electronic form, on my electronic information. I had to spell Superior Semi-Circular Canal Dehiscence. I now have to use a speaker phone for all my calls as I can’t hold the phone to my ear – the vibrations coming into my ears make me dizzy and give me ear-ache, part of the SSCD mentioned. And speaker phone is not good for sibilants. She made the note and told me I should send in my Specialist’s letter confirming the diagnosis – the original letter, not a copy, and gave me the address. Call concluded.

Then I called the Jury Central Summoning Bureau. I’ve been called for Jury Duty, and I am not fit to undertake it. I am on many medications, and quite a few warn you not to work machinery when you’re on them let alone make decisions about people’s lives. I suffer from near constant headaches and constant chronic neck and backache, migraines, a lack of concentration and memory and now hearing problems. Also I am unreliable – I can usually manage 1-2 ‘good’ days a week**, if a case went on longer than that, I would not be guaranteed to make it through . I would not want me to be on my jury. That is a personal point of view, about me. I think that Disabled people should be on juries, just not this one. My call was to explain this, but it was futile. I’d sent in my Form, but it only had a very small space for me to explain my situation. It has tick boxes for reasons you can’t attend. One of them refers to the Mental Health Act. I have not been Sectioned, so that does not apply to me. I sent a hand written letter with the form explaining why I would not be fit to be on a jury, and I just wanted to confirm this with the service. However, they could discuss nothing on the phone as they’d not got the form yet….I was called for July 7th, and I didn’t want to cause them trouble. We shall see what happens.

Where is the Confusion? Where is the Panic? Well, that comes next. At about 5pm on Wednesday a horrible thought came to me, well, a horrible realisation. I’d asked the DWP lady to make a note of my new condition, but not that I was going to send in new documentation – new proof. If my claim was going to be ‘actioned’ by the end of the day (6pm) I needed them to know that new evidence would be coming to them, so as to stop them making a negative, uninformed decision. Though I mentioned this to the lady on the phone, I had not made a specific point of having it put on my record. Which you have to do. Since last years ESA debacle I have been concerned, near consumed, with Doing Things Properly. Being thorough. I did not go on JSA because I did not want any excuse for the DWP to think me able to work – and because it would be wrong. I am not looking for work, I am looking for a way of supporting myself – I am looking to make a life that supports me, which is different from merely looking for work. I want to gain qualifications and experience to enable me to become self-employed, so I answer my own abilities and my own body. And I want to get healthy enough to have the stamina to do this. A person in this position is not a person to go on JSA. All year so far I have been attending medical appointments, trying to a) get a diagnosis for an ear problem I have had for over 2 years*** and b) get help with my escalating Depression – my self harm, which is new to me, and my constant thoughts of suicide**** c) trying to get some help understanding my ‘Social’ problems – what may be mild Autism. This is not a fanciful fashionable thing. My closest friends are Autistic (and female) and beyond sharing many of their and the spectrum traits, it has been suggested to me before by a Psychotherapist that I may also be on the Spectrum. Before she died my Mum asked me to get tested, so I am going to and finally d) attending Physiotherapy and avidly undertaking the exercises so as to get my body working as well as I can.

I’ve also been working all year on getting an Advocate to help me with my ESA application. I have contacted my MP and many, many charities, as well as a journalist, to reach this end. I now have an Advocate – someone who has known me now for over 5 years – a lady from MIND who helped me go to Tribunal in 2010 – when I first applied for ESA and was found Fit For Work. So for 5 months I’d been working on ESA when I got the first form. Got the Fit Note, sent it in. After this I got my SSCD diagnosis formally. I was so relieved. I also had an appointment for a Mental Health Assessment, and a further appointment made to see a Psychiatrist. Further relief. But I forgot. I forgot, in my relief and the seizures that followed, that I should have been informing the DWP of these developments. I forgot that I should send letters and proof to them as they came in. The relief at getting said letters, of seeing doctors and Mental Health Nurses, of finishing my Physiotherapy and being referred to Pain Management flooded my mind and drowned out my DWP-sense*****. So on Wednesday at 5pm, I called the DWP again to inform them that I was going to send new letters, new ‘evidence’ of my situation and conditions. I rang up, chose an option and was put on hold. This time the Vivaldi Loop of Doom lasted over 30 minutes. I have a portable land line phone, and it was on speaker. I had to take the phone (and my NI number) into the toilet with me while I waited to get through to the DWP – not done that before. I took the phone to the sink while I filled a kettle and made tea… But I got through  and I am very glad I did. Very glad. Glad I kept waiting. Head pounding, heart pounding. I told the New Lady on the Phone about my situation. She was so kind and understanding. She told me she was going to put a note on my file, and she told me it would be better to get my documents scanned at my local Job Centre, as they would be sent directly and immediately to the DWP, rather than taking a week. This had not been told to me by my last Lady on the Phone. It’s a good thing to know. I’d much rather have my documents scanned and sent directly, than posting the original letters etc. (which I still need to go to appointments) to Ireland, and wait 9 days to hear from the DWP. The relief was overwhelming. I would go to the Job Centre on Thursday and get my letters scanned. I had a nosebleed – a stress nosebleed, and was so badly affected by the stress and anxiety that I was quivering and I believe my eyes and general demeanour was affected – my Dad noticed that there was something wrong, he said my eyes were ‘going everywhere’. My Tinnitus became so loud and engulfing I couldn’t hear the Parakeets through the open window.

Thursday  – preparing to go to the Job Centre and to the Polling Booth. I was shaky as I was anxious and had not slept. I had to get to the Job Centre. Had to get the evidence to the DWP. Was it enough? Letter re: ears, letter  and report from Physio, letter from Mental Health Service… Would they believe me? I opened my e-mail to find a message from a DWP Decision Maker telling me the ESA had been awarded me. That was it. Relief again. I went to tell my Dad that he would not have to drive me to the Job Centre that day. I was shaking again. He made me sit down, and suggested I have a volume of alcohol to calm my nerves. Instead I took my meds (Citalopram, Propranolol, Diazepam, Omeprazole, Gaviscon) drank tea and got dressed. But I knew I may have to get the forms scanned anyway. I don’t take anything for granted. I was happy but jangled all day. Which was wise. Today (Friday) I got a text message from the DWP telling me that they had ‘received my claim’ and that ‘my Fit Note must be sent as soon as possible’. Hmm. I sent my Fit-Note with my form. And I know they had received my claim  – that was on June 2nd. And according to the E-mail I had been awarded the Benefit (at the initial low level of £70 p/w). Was this text really about the other letters, but is the only message they send? Is it automated, so that whatever evidence is needed (Fit-Note, medical report, letter in blood…) is called a ‘Fit-Note’? It worried me again. So I am worried again. Monday I shall be at the Job Centre, getting my letters scanned.

A post-script of sorts. Beyond sending the medical and diagnostic letters, and evidence of appointments, I am also sending the DWP photographs. Photographs of the cuts, scratches and scars made on my arm and legs in the last months. Self-harm of this sort is new to me. Previously I had pulled my hair out exclusively. But in the early months of this year, that evolved. As I have said, I undertake every aspect of my ESA application comprehensively. And that includes the photos. They are my proof. I don’t like this. I’m not an exhibitionist. I am not proud of my situation. But I have to do this. Not only for myself – not only because I have to know I’ve done all I can to prove to the DWP that I am not a healthy, capable person. That I don’t function as they, and I, would like. But also for other people like me – with invisible illnesses that are made much worse by the terror caused by lack of money and the disbelief of the DWP and others. I am lucky. My Father is in a position to support me, and more important, he is willing to do so. At least 90% of people who need support do not have this. I am aware of it. So I am doing this for them too.

*I have no idea of who that person is. I know I have a letter with their name on. I have not remembered it – for fear of having an object of hatred. I don’t want that. It’s their job. I may think them an arsehole, but people have done much worse for money.

**A ‘Good Day’ is a ‘Vertical Day’ – a day I leave my bed. A day I may get dressed. I may leave the house.It is not guaranteed that I will have even 1 day a week like this.

***I first went to my GP over 2 years ago to get sent to ENT. I was put on medication by them, but the referral never happened. I went back a few times but nothing happened until late last year, when I saw a different GP.

****I was brought up a Catholic. And I promised my Mother that I would not end my life before my Father’s had ended. I also promised him when Mum was ill that I would not kill myself – because he said he could not take it. It doesn’t stop me from visualising it. And I’ve even got to the stage of visualising my Dad living with my Brother in my absence. I could not do it in my Dad’s house. I made 2 promises and I have my religion – these are the ties that bind.

*****Like Spidey-Sense, but more foreboding.

Something for the Weekend: French woven silk, c.1760 – lace and leopard print brocade, in the Victoria & Albert Museum, London – Amazing pattern for the 1760’s. More information can be found on the V&A website, and copyright for the image belongs to the V&A.



Anaemia! Anaemia! Dog shed it’s hair on thee…

This is just a diary style post to record the everyday problems I have – their frequency an impact. Ok. Because I am chronically Anaemic, I have to take Ferrous Gluconate (Iron) twice a day. The problem with this is that combined with the Codeine I take for pain the Iron causes severe Constipation. I’ve been hospitalised with it before. After the worst episode, I stopped taking the Iron but got so sick I had to go back on it, my GP gave me a laxative to help out. Laxido is a powder you drink, you can take up to 8 sachets in 24 hrs, and you do when you start, well I did. Laxido is a Osmotic Laxative – it helps you retain water in your stools to keep them soft. However, after a while, the Laxido stopped working. I was then put on Bisacodyl which stimulates the bowel. And at first this worked. One tablet at night, and the next day, normal function. But of late this has not been the case – I take the tablet and the next day I would get violent diarrhoea. Then that changed to take a pill and nothing would happen. This would alternate – I would have no idea of what was going to happen, even when I took the pill only once every three days. It became a game of anal Russian Roulette. A game that stopped me from leaving the house. So I started only taking it when I knew I had nothing planned – no appointments, no volunteering etc. Which was both useful (I did not have to worry about soiling myself in public) but also depressing. In response to this I decided not to take it during the week (and thereby not defecate for a week – nice) and only take it at weekends – so I would not go out then. But don’t worry – I was getting exercise –  I was running back and forth to the toilet. Dreading what was going to happen, barely getting sat down before my stomach started to burn and bubble. After rabbity solids, there would be healthy stool which was a cause of short rejoicing, for after this would come water. Constipation causes Haemorrhoids – also known as Arse Grapes and Chalfonts*- anal bleeding and headaches. It is not nice. People like me joke about it because it’s so obviously horrible. It is common in Hypermobile people because we have floppy, stretchy insides.

Then there is the Anaemia itself. This is one condition I find very interesting. For years my blood tests threw this up, but doctors just ignored it while using it as an excuse or reason for other of my problems. So, when I failed to heal after an operation or even after a bad graze**, it was put down to Anaemia. So too my extreme tiredness. But it was never explored or really treated. It was a decade after my EDS was diagnosed that the side effects of my Anaemia were clarified: my easy bleeding and slow healing is caused by EDS, but complicated by it. My tiredness is part the side effect of pain, part the product of depression and it’s medication and part Anaemia – you see the drift. However, there are 3 things that happen to me that are definitely caused by our friend Anaemia – 1) Very heavy, long menstruation. A week, a full 7 days of ruined sheets and unhappy pants. The heavy bleed supports the condition that makes it heavy…a Mobius strip of red cell reduction. 2) Breathing difficulties. These were a surprise and are alarming. Walking up my stairs to bed, I found myself gasping and getting no air – I imagine it’s how a Vampire would feel. I breathe in and out, but I can feel nothing in my lungs. I get light and then heavy headed, and tight and sore in my chest. Now this happened a lot when I was young, and I was told it was stress; but after beginning regular Iron I realised it only happened if I ran out of pills. Sometimes I have forgotten to take my pills and this problem – extreme and sudden exhaustion and then lack of breath-  kicks in rapidly. In order not to suffer this, as it is very debilitating – more so than pain – I have a friend send me an Iron alert, a reminder for me to take it. 3) Styes. Anaemia makes you ‘run down’ for you can’t absorb vitamins and nutrients when you’re Anaemic, which makes your condition worse, again, a Mobius situation. If I’m ever unsure of what is going on in my blood, a Stye will form and tell me. A pus filled blob on my right lower eye-lid. Always the same eye, and same place. I lack eyebrow and lashes in various places due to Chicken Pox as a child***, and my Stye turns up in a Pox scar. It can arrived in mere hours: I once had one develop (a beaut) in the 90 minute train journey I was on between London and Bristol. Lovely.

Anaemia is very common in women, but is not really considered a serious condition – you don’t see posters and campaigns to make people aware of it. It’s a slippery condition. But it is serious. I didn’t take much notice of it until my Dermatologist (one of the best all-round Doctors I’ve seen and so kind) made me take note. She saw my blood tests and told me I had less than 1/2 of the Iron I should have, and also only a 1/3 of the Vitamin D. She explained that they go hand in hand, that when your blood is sick, everything is sick.That though I am far from thin, I was technically malnourished. She made me try a more organic approach to Iron – I had to eat rare steak. I ate steak every night for months, with spinach, but my blood did not respond. It has to the 600 mg of Iron I take as pills. My Iron levels are not normal, but they are better. And I notice the difference.

I’m a convert preaching – always an annoying thing – but I say take any hint of Anaemia seriously, and ask your GP to be checked for it. So too Constipation – don’t live with it if you don’t have to, it’s not normal. It’s embarrassing, but there again so are your School photos (usually) and you’d talk about them.

About Anaemia:

About Styes:

*Cockney Rhyming Slang: Chalfont St.Giles= Piles. So, ‘Chalfonts’. I have been known to break out into ‘Burning Ring of Fire’ in the style of Johnny Cash  when things get intense back there.

**I bled through my sutures when my Gallbladder was removed, and once when I grazed my knee as a child I had to be taken to hospital because it would not stop bleeding, and then because it did not heal. I still have the scar. Having elective (plastic surgery) is not encouraged for EDS people because we heal badly, scar badly and can end up with very lumpy Keloid scars.

***The Chicken Pox I had aged nearly 3 was horrendous – I had scabs on my eyelids etc. I still have many of the scars, which of course were very bad because of my EDS. Remember this if you are EDS and you have children who may be EDS too – if they get Chicken Pox or Measles, or lots of insect bites, they have a higher chance of scarring badly.

The title of this post is based on the words to ‘America The Beautiful’ by Katherine Lee Bates.


MOEBIUS-1 escher.jpg

‘Mobius II’ by MC Escher – 3 colour print. 1963.

Visualising a brick to the head.

This is how I deal with the pain I get at the nexus of skull and neck on the left hand side. It’s this or a baseball bat. It’s a bit like turning your computer on and off again – you already have a pain, which laughs in the face of Analgesia*, so if you cause another, ‘real’ pain**, it may re-boot your nerves and feelings. This is certainly what happens when I use acupressure. I was taught to use acupressure on myself by a chiropractor and a physiotherapist, and it works for me. I have very pointy fingers and thumbs – I can ‘cut through’ (press through) my skin, fat and muscle to get to the bone on my legs, feet etc. I can give myself a goodly Vulcan Death Grip, but I can’t salve the neck problem. The more pressure I put on my neck, the weaker my grip gets: as it should. So, instead, I do my stretches, take pills, lie on the cold floor, and visualise someone thwacking me on the base of the noggin until my neck reacts by making me floppy. I know that’s not what would really happen, but if nothing else, this fantasy violence helps with my frustration. And it plays nicely into my habit of self harm. Do not get me wrong. I do not get off on pain. But I have found that causing myself a prick of pain can help calm me, and also help with my real, nagging, unending pains.

My neck and shoulders have – generally- been ‘better’ in recent years. They were at their worst when I had my car accident in 2002, during my final year at university and during my last job in 2007. That job broke me. I over-used my arms too much while being incredibly stressed. I’d damaged my shoulders and back at Uni the years before  (I had big, rock hard biceps), but that last year 2006-7 was awful. I had massive Trapezius and Sternocleidomastoid Muscles that were rock hard and constantly sore to the touch. They are still sore and hard but no longer enormous. I get ‘episodes’ or pain ‘crises’ irregularly rather than at least bi-weekly – though since my Mother got sick, they’ve become more regular (every 2 months). But I have forgotten my coping mechanisms – beyond pills. I forgot how I used to watch hours of music television or costume dramas. Hours listening to music. Looking through books. Anything to take my brain away from the pain that is so close to it and so powerful.

I’ve have this pain for 4 days now. Today is the first day since Thursday that I managed to get vertical for long enough to get dressed and leave the house. I was out of it for less than 3 hours and that included 45 minutes sitting in a cafe with my Dad where I quaffed coffee and scoffed Diazepam in an attempt to get this pain to fuck off.  I’ve eaten, filled out a Sympathy card for my neighbour***, changed into my night attire, watched lots of crap TV. But the pain is still there. And now I’m visualising someone using my  External Occipital Protuberance for batting practice.

*I really wish this word didn’t have ‘Anal’ in it, makes me feel wrong.

**Let’s be clear, I know Chronic Pain is ‘Real’ because I have it, I use the term here as pain I could explain away, clearly, to a 10 year old or a sceptic GP. ‘Look here is the wound that caused the pain, here’s the brick that made the wound that caused the pain…’.

***I totally failed at Father’s Day because I couldn’t leave the house because I was too fatigued and pained. Last night my neighbour Eileen died. She was 80+ and had always been kind to me. My Dad is not very good at Sympathy Cards, so it was my job. I also had to get a card to congratulate my Cousin on her MA Graduation (tomorrow) and also a Thank You card for my Dad for taking me away from London.


‘Ecorche’ – anatomical illustration of flayed body displaying muscles of neck, arm and back. Pencil and pastel/ chalk on Paper, 1810’s. Copyright The Wellcome Collection.

Chest and Neck and Head and Sleep

I returned from a trip, a Holiday, on Thursday evening. A trip to the Midlands via comfy vast Volvo. I was there for 2 nights. And so far, I’ve spent the same amount of time sleeping it off. Holy Hell, have I slept. I’ve been awake less than 6 hours a day since. Today I woke at 3pm, was asleep again by 10pm and woke at 2.30 am on the Kitchen Floor. I’ve had constant neck and head pain since Thursday – a continuation of the pain I had when away (which I will write about in a different post). I can’t get rid of it. I’ve bombed it with Codeine, Ibuprofen, Paracetamol, Diazepam. My Migraine tablets (Rizatriptan) took the edge off what was a Migraine on Friday and Saturday. While away I diligently undertook my Physio. I rested, kept myself watered (I sound like a cow or horse) and ate (far too much). I had hot showers and soaked my feet. But I could not prevent what has now happened. However, I thought that it would last less time. I failed to get out to get my Dad a Father’s Day Card – there were no shops where we visited – because I’ve not left the house. I’ve also had a huge flair up of both Palpitations and Costochondritis plus the delightful addition of Constipation (Painkillers + Iron Tablets = Poos of Doom). But mentally I am sanguine. I am not in a pit. I have that running ‘thrub’ of Anxiety, caused by my body wanting to be asleep, the heavy feeling you get when you face the stairs to your room with dread because they seem Everest.

So this is another documentary post, a catalogue of grumbles. I do apologise, but I have to document. My memory is very bad at the moment. Last night I was writing my Diary for the day and I had forgotten when I went to bed – that I had found myself on the Kitchen Floor at 7am, in bright light and then went up to bed. I forgot all of it. It was only remembering how I checked on my Dad (he was not snoring, so I went to make sure he was ok) that reminded me. In addition to my memory being shonky, my hair is falling out. I noticed a few months ago, and thought it was a stress blip, but now it’s constant. A dusting of strands on the pillow – a new thing for me. I used to pull it out – Trichotillomania. That only stopped when I was caring for Mum – after 20 years. So now, having finally stopped balding my noggin myself, it’s decided to denude itself. It may be stress. It may be a nutrition thing. I shall see. I have other symptoms of stress/ vitamin deficiency – terrible skin, including boils/cysts. A week of proper regular rest and vegetable eating, should at least give me some idea.

An antidote to the above. When I need something solid in my life, I turn to costume dramas. At the moment I am watching the BBC’s 1971’s ‘Elizabeth R’. The costumes, particularly Glenda Jackson’s, are perfect and the script is very, very good (I learned to say ‘God’s Death’ as a swear from this). It’s pre-HD and CGI so be prepared. The music is by an amazing man called David Munrow who helped revive interest in Early English Music and also created the soundtrack for Ken Russell’s ‘The Devils’. ‘Elizabeth R’ can be bought on DVD, and perhaps found on Youtube. But here is a mix video of Munrow, who had a very short life (which he ended himself), but was very talented:



DWP….still waiting.

This is really just an update – a post to record facts. I posted my ESA1 Form, Fit Note and Tax information to the DWP, in their envelope, on May 24th. They received it on June 2nd -so it took 9 days for a Second Class envelope to get to them, and that’s when there isn’t a postal strike. I hadn’t heard anything from them on Monday June 13th. I was told that when they received it, they would text me as I had put my mobile number and details on my Fit Note. This, of course did not happen. When I called, I was told, yes, they had it, and that it took them 10 days (note, not Working Days – so you don’t need to add weekends) to process it. So on that very day, I should hear something – either I would have a letter, the mythical text or a phone call. But nothing. It’s now June 16th, 10 Working Days since they got my  Form, Fit Note and Tax information – and no contact.

I got incredibly Anxious and Depressed filling out that ESA1 Form and organising my Fit Note. I became Suicidal, stopped eating properly and scratched bloodied symbols into my left forearm. So I will literally have the marks of this experience on me for a long time, perhaps (given my EDS and scarring problem) forever. And I hear nothing from the DWP. They will have logged I called to ask, they will know I’m concerned. They will also know that I am without funds* and that getting help quickly is pretty necessary for me. But they don’t care. The longer they keep you hanging, the less money they have to pay you. But they don’t think that it may cost the Government more money in the long term – via the NHS. The DWP just want to keep their costs down, and if in the process they make people ill, and thereby cost the NHS money, so be it. It’s quite an inhumane policy.

In contrast, my Physio, who I last saw on June 2nd, wrote a referral letter to a Pain Management Team for me on June 6th, and I got my copy on June 14th – she did as she promised in 4 days.

* My Dad is still funding me, but I had to replace some worn out clothes (underwear) and I’ve now run out of money. I will not starve, but I won’t be able to use Public Transport etc. until the beginning of July. At least my pants should last at least 6 months, unless something fantastical happens to them – theft by Panty Monster.

Update: I phoned the DWP today (June 17th) and they told me that it was not 10 or 12 Working Days, but 14. 14 ‘Working Days’ is basically 3 weeks. 3 Weeks to process a form. I can tell you from living with a Representative that in the UK an Insurance Company has to process your claim in 10 days, and if nothing happens, you can get the Independent Ombudsman to sort it. I don’t think we have an Ombudsman for Government Departments. But I’m going to find out.

Two Steps Forward…

… But only one step back. This post is really just to record an event. When I went to see my local Mental Health service in May (17th) I was told to expect to be sent information about returning to CBT (Cognitive Behavioural Therapy) and Group, and I was also given an appointment with a Psychiatrist in order to discuss my having another disorder*. The appointment was made for July 4th (a Holiday for any of my American readers – Independence Day), which is not bad. However, today I received a letter cancelling that appointment and putting it back to August 8th. This is still not bad. I was expecting a 6 month wait. Years ago I had to wait 8 months for a first appointment, and that was when I had terrible Tinnitus and was Suicidal. The most Suicidal I’ve been. Scared of going to bed because of the noises in my head. So, after funding cuts in the NHS etc. having to wait from May to August is not bad. But I would not be surprised if I get another letter putting the appointment back. I’ve had that happen with Orthopaedics, Dermatologists and Rheumatologists more than once –  I even had 2 letters in the same day changing the same appointment. So it’s time to wait and see.

I’ve not yet heard from the DWP,  Monday I shall be calling them. I really hope they got my ESA1 form as I don’t want to one in again. However, if they did, and this is how long it takes to process, the situation is bad. Very bad: I have financial support from my Dad, but most other people turn to the DWP for help when they have nothing – no support network – it should not take this long to process a form and provide financial help.

And Now For Something Completely Different

Something I believe everyone can relate to: test results. In this case a Cervical Smear. Delightful subject I know, but bear with me. Everyone in the UK has some kind of regular health test, even if it’s self adminstered lump checks – Chaps, if you don’t already, check those testicles and your breasts. Every 3 years women get called for a Cervical Smear. I have always been scared of these – not because they hurt (though they have on occasion – rough nurses, wrong sized speculum) but because my Mum had Cervical and Ovarian Cancer. When I was 7 she was diagnosed with Stage 4 Cervical Cancer and given a Radical Hysterectomy, including the removal of one ovary. She was 40. They told her that she had had the Cancer since I was in utero. The year before, her mother, my ‘Granny Grunts’ had died of Lung Cancer. The pile up of Cancers affected me deeply and selfishly. It took Mum 6 weeks to recover, she had to re-learn how to urinate (but she was very lucky she was not left incontinent – in the 80’s that was a common side effect of Hysterectomies). At first she had to go for check ups every 3 months, then 6 months, then yearly, then 2 yearly. By the time I was old enough for my first Smear, she’d stopped going. She was lucky she didn’t need HRT, she didn’t go into Menopause etc. but it was the end of her sex life. 3 years later her sister died aged 47 of Lymphoma.

At the moment, Cervical Cancer is not believed to be genetic. Some Cancers are. All of my Maternal family have died of Cancer. My Great Gran had Bone Cancer, my Gran (her daughter), Lung. Her Brothers had Throat, Ear, Brain and Breast. My Aunt died of Lymphoma, and last year my Mum’s second Cancer, Lung, got her, 28 years after the first. So, while the specific Cancers may not be Genetic, considering my already interesting genetic inheritance, which comes from that side of the family, I am ever aware. This year I shall be 36 and without my Mum for my Birthday. I booked a Smear. The Nurse asked why I wanted one, as I only had one 2 years ago. I told her that by my age my Mum already had her first Cancer, and that I don’t have her now because of the Second. She got it immediately. Today I got my results and I am clear. I had wondered why I’ve been so nervy, so anxious and not sleeping or eating the last days. It wasn’t just because I’ve not heard from the DWP, not just because I’m living on £50 per week from my 71 year old Dad, in his house, but because I was waiting for my results.

So, get your tests people. Boys and Girls, check those breasts. Check your balls, go for Smears. Odd moles, lumps, aches, pains, tiredness, bowel problems – all of it. Family history or no. If you have an Old Man in your family, make sure he gets his Prostate and Bladder checked*.

Post Script: When I was 20 and had my Gallbladder taken out, the surgeon thought I had Cancer. He told my parents but not me. I only found this out about 3 months ago. It explains why my Parents behaved as they did – got so stressed they nearly Divorced (and my Mum was an ardent Catholic) and allowed me to have my first real Christmas Tree (my operation was December 15th).

* I currently have 2 male members of the family (they married in) who have or have had, Prostate and Bladder Cancer. So if the Old Man in your life has problems urinating, make him go to the Doctor. It’s not nice – the tests and biopsies, but it’s better than dying. Yeah, he’ll walk funny for a bit, but Hell, Shit Happens.