11/24/2008 02:42:00 pm BenefitScroungingScum 15 Comments

After a fairly miserable 10 days I went to see my GP this morning. Gastrointestinal problems are more common in people with Ehlers Danlos Syndrome than they are in the general population, thought to be because the digestive organs are supported by and partly made up of connective tissue. As is typical on a monday morning all the appointments had been taken by 8.31am but as is also typical for the practice I'm registered with they will always make sure patients are seen if it is urgent/emergent.

After a quick explanation of symptoms and a comment from my GP about my having lost weight I was on my way to the chemist to pick up the Nexium and Motilium I'd been prescribed. As ever I was struck by the need for continuity of care in GP practice, something the current government seem desperate to destroy. Simple things like my GP being able to tell I have lost weight without having to weigh me or consult records are perhaps difficult to quantify but important for patient care and I expect also important in saving time and money.

The Love Interest (TLI) was eager to know how I'd got on, and whilst we were chatting about it he started to reveal a little of his feelings about the situation. Much is made of physical symptoms but the emotional consequences of ill health have far more devastating effects, not just on the person with the condition but those around them. It is very difficult to form and/or maintain personal relationships when also dealing with a chronic condition, but it is also very difficult for those who care for us.

TLI mentioned how difficult he finds not being able to 'wave a magic wand' and make everything better, and how he is trying to think through whether he will be able to cope with that. I appreciate his honesty but I also appreciate how much he does help to make things better just by supporting me emotionally, something far more valuable than any magic wand could ever be. If anyone does have any insight into how to reassure a supportive friend/partner/family member in this kind of situation then I'd be really grateful for your thoughts.

Having got all that out of the way it's time for the unrelated scandalous gossip. Siobhan came to stay this weekend, which of course meant I was ill. Perhaps she's a jinx? The first occasion she came to stay I ended up in A&E and I have been ill on the other occasions. Despite that we had a lovely weekend together having girlie time, catching up on gossip, watching dvd's and looking at each others photos on facebook.

Like many of us Siobhan has reconnected with old school friends via facebook (it seems so much better for that than friend's reunited) Siobhan lives in a different part of the country and our different groups of friends have no connection. Or so we thought. We were looking through photos of one of the (many, many) men Siobhan is currently interested in, and there in amongst more innocuous photos of this guy's 30th birthday was Roland's girlfriend. Naughty nurse outfit and all!

I recognised her immediately and would have done so even if I had not already known she works as a stripper, but there was something really bizarre about seeing photos of her in that context. Unfortunately it's one of those awkward situations where Roland is completely besotted with this woman and without exception all his friends dislike her. No, not because of the stripping, we're far too broad minded a group to care about things like that. Roland is completely head over heels and will do anything for this woman, he sends little presents to her workplace if she's having a bad day, and practically does an enormous amount to help her out. Roland is still having a really hard time after the car accident he was in, he's unable to go back to work yet and so he's scared, depressed and unhappy. His girlfriend doesn't even seem to have noticed and I've lost count of the number of times he's cried on my shoulder. Literally.

Ironically Roland's physiotherapist has just told him she believes him to be suffering from Hypermobility Syndrome*. I suggested that some months back but I wish I had been wrong.

*Hypermobility Syndrome (HMS) is generally considered to be a milder version of the old EDS type III now called Hypermobile EDS. Some experts consider the two names to be interchangeable and that it is the same condition, others view them as distinct entities. For what it's worth my personal opinion is that they are distinct conditions. Personal experience suggests to me that HMS is very common although just as poorly recognised as EDS and is a much more benign condition than EDS. Unfortunately many of those diagnosed with HMS struggle with multi system symptoms but struggle to have that recognised because it's 'just' hypermobility a struggle which would likely be unnecessary if they had a label of EDS.


Bog Off! Exhibits 6 & 7, The Don't fall Edition

11/19/2008 06:55:00 pm BenefitScroungingScum 11 Comments

In honour of World Toilet Day '08 Benefit Scrounging Scum is delighted to bring you a double exhibit -The Don't Fall on the floor whatever you do edition

At first glance both these toilets look pretty good. Well, unless you're a disabled person who actually wants to use them that is.

Make sure you don't smack your head or in fact any part of your anatomy on your way in to this first exhibit found in Nandos. The sticky out metal thing on the wall had something to do with the baby changing facilities and nothing to do with the features supposedly for disabled people. Oh, and there weren't any facilities for adults who need to be laid down and assisted with their continence products, but that's no great surprise because typically there aren't any.

Like most of the loos featured in Bog Off! these examples seem to conform to the size requirements, and probably all claim to be DDA compliant (Disability Discrimination Act)

The problem being that once there's been a bin placed on
the floor, or as in many places a baby changing station, what would anyway be a very small space in which to turn a wheelchair and transfer becomes an exercise in contortionism. Whilst those of us with EDS might not find that too problematic I very much doubt the rest of the disabled population feels the same way.

Mirrors are very much to be welcomed, but aren't of much use unless full length or lowered to the appropriate height for someone seated.

There is a reason accessible toilets have to have a pull cord and it is a simple reason. These are facilities for people with disabilities and p
eople with disabilities tend to have more falls than the wider population. I'd hazard a guess and say that is particularly likely to happen in conditions where the access is less than perfect. So it does help if the cord to summon assistance is easily reachable from the floor rather than say being looped around one of the grab bars as in both these examples.

That's unless yo
u're an M&S customer in which case be warned, summoning assistance via the cord for that very purpose may just well earn you a ban from all M&S stores. All I can say is M&S have clearly been taking lessons from Social Services in how to avoid providing facilities for disabled people. That's right, blame it on Health and Safety.


Mac an Cheez plz!

11/17/2008 06:25:00 pm BenefitScroungingScum 29 Comments

I have been healed! Yes, that's right, healed! Well, according to the person who ever so 'kindly' did the healing I have. Skeptical? You should be.

So, how did this miraculous healing event come about? Are you sitting comfortably? Then I'll begin...

A couple of weeks ago I met a friend of a friend, a delightful American lady. It turned out we shared some interests, including blogging and so we swapped details and became facebook friends. On Saturday I was invited to the lovely lady's home for dinner.

It was only when I arrived that I realised it was a dinner party. Having only met my new friend once previously I didn't know anyone, but my heart still sank when I first entered the kitchen and heard another guest earnestly describing how everywhere she lived was always haunted and what the various ghosts did. I mumbled something about preferring the rational and hypnagogic dreams when asked for my opinion but mainly kept my mouth shut, y'know being in someone else's home and all that. I tend to believe in the Voltaire misquote, "I disapprove of what you say, but will defend to the death your right to say it" and so I reminded myself of that and gritted my teeth and went to meet the other guests.

Without exception they were grolies, I was particularly mystified and revoltedimpressed by the earnest, white, middle class, male African drumming instructor. Quite what connection he had with Africa I never did elicit but he was into ghosts too. Unsurprising I suppose as ghost lady no.1 was his partner. The other guests were a yoga teacher and a man who defrauds people for a livingis a life coach. It was white, over privileged, upper middle class hell. And vegetarian. My teeth are yet to recover from so much grinding.

Dinner was lovely if you like lentils and tofu. I like chocolate, chips and burgers, but happily I'd brought chocolate with me, ostensibly for the hostess but I ate most of it afterinstead of dinner.

Having Ehlers Danlos Syndrome means my disability is pretty much invisible and it's not something I tend to bring up unless asked about it or most commonly, when I'm asked what I do for a living. I usually just say something about having a genetic disorder which makes my joints unstable and leave it at that so if people are interested they can ask. I had been asked the occupation question by several people and particularly Mr Life Coach(MLC), but after dinner the talk turned to healing.

I was struggling to get up from the sofa which was noticed by MLC who commented that I could 'probably do with some healing'. As it was kindly offered and I couldn't see a way to politely refuse I accepted thinking it couldn't do any harm.

So MLC suggested I get into a comfortable position on the sofa, put his hands on my hip and told me to put my hands together infront of me, in a sort of open handed prayer type posture. So far so not too awful I thought, but then he started to speak.

MLC instructed me to repeat after him something along the lines of, 'I have a problem, I want this problem to change, this problem will change' Again I thought, fair enough, the power of positive suggestion being particularly important in eliciting money from vulnerable peopleany kind of recovery. So when MLC first asked me what I had done wrong to cause this problem I didn't understand and just said 'well, I have a genetic disorder'. That wasn't the answer MLC was looking for though as he said it again, more emphatically. "What have you done wrong to cause this problem" Being slow to catch on I mumbled about genetics and DNA. "No" he said again,
"What have you done wrong to cause this problem".

It was at that point I knew the only way out of the situation was to start making things up, but not before I'd had that momentary feeling of guilt for causing my own disability. Hmm, perhaps MLC went to the same school of communication as my old GP? Then MLC told me that his shaman was telling him off for not asking my full consent. I'm still not sure if his shaman heard my brain suggesting it fuck off, but I'm going to assume not. Especially as my more socially acceptable side told my mouth behave and give consent.

I managed to come up with a couple of reasons I'd brought a dislocating hip upon myself, though oddly having screwy collagen was no more acceptable a reason than genetics or DNA had been. Things like lacking self confidence and inner strength however were deemed as excellent reasons for my hip to dislocate. I have since told my hip, shoulder, jaw, rib, knee, take your pick joint, that it lacks self belief but, unsurprisingly my hip, shoulder, jaw, rib, knee, take your pick joint poo-poohed that idea and dislocated itself instead.

So, lacking in enough self confidence to leave I allowed the 'healing' to continue. It consisted of my having to come up with various reasons I'd brought this all upon myself, tapping 7 times on various parts of my body and 7 deep breaths in through the nose and out through the mouth. At the end of which I felt a bit lightheaded and therefore slow on the uptake when asked to rate my pain level between 1 and 10. Silly me, I had always assumed an honest answer was the only right answer to such a question. It took three repeats of emphasising my guilt, tapping and breathing to be told this would continue until the answer was 0. At which point my pain had a miraculous curing event and got itself down to a 0 pdq.

Not quick enough to avoid several more rounds of guilt stating, tapping and hyperventilating. 'What can I say?', I'm a slow learner. Especially when distracted by chocolate and the thought of proper painkilling drugs.

Eventually though, I was declared cured. Yes, really cured. Apparently all I had to do was keep repeating the exercise any time the pain or symptoms came back and they'd go away again. I'm not too sure what MLC made of me then dislocating my hip into the yoga teacher's hand to explain exactly what I meant by 'unstable joints'. Probably similar to the yoga teacher who emphasised people can never be too flexible and suggested I attend a class. MLC gave me his card and told me he would email the exercise to me.

I thanked MLC, because really, what else could I do in someone else's house, and it was a kind offer for a service that
judging by his non environmentally friendly executive car, I assume usually costs quite alot of money. Fortunately the entire group then focused their energies upon changing the direction of the Californian fire by controlling the wind and so were distracted from my miraculous non healing healing event.*

I blame the 'healing' for my dislocating shoulder pulling the shower curtain, complete with metal pole onto my head the following morning. Concussion is a wonderful thing and certainly more real than this kind of 'healing' could ever be.

Next time I find myself in such a situation I plan to get incredibly drunk and explain sexual positions in explicit detail. Again. I find it ensures one never gets a second invitation, and hey, if it ever does it'll probably be a party worth attending.

*Yes really. D'you think I'm capable of making this stuff up?!


11/10/2008 06:05:00 pm BenefitScroungingScum 16 Comments

Time is flying by at the moment. Thank you to everyone who expressed concern for me, I am ok, back to my usual cheerful self, just busy and lacking time to blog!

Life is back on it's usual rollercoaster of good, bad and ugly. One of the most daunting things about moving is packing everything up, especially so when you are very limited physically in what you can do. When it comes to actually moving I have plenty of lovely friends who've already volunteered themselves for the removal task force, but of course I still have to get everything packed up for that to happen. I'm trying to do small amounts every day, and I'm selling what I can on ebay. It's all going well, but means I just haven't had the energy to blog.

It was my birthday last week. The day itself passed in a blur. Initially I thought I had picked up some sort of bug but I soon realised all the symptoms I was experiencing could be put down to several days of increased instability in my spine and pelvis. Ehlers Danlos Syndrome tends to be thought of as something that 'just' affects the joints although anyone with the condition could come up with multiple reasons that isn't the case. Something I understand more now I understand the condition more is just how many other symptoms dislocating major joints can cause, especially relating to pelvic or spinal instability. I tend to find that if I've had multiple spinal dislocations or subluxes then problems with bladder and bowels go hand in hand.

Although my actual birthday was a write off for those reasons, I went out for dinner with Roland, Red, Ben, and a couple of other friends at the weekend which was a lovely night and more than made up for a few dislocating joints!


Tomorrow's another day

11/04/2008 08:53:00 pm BenefitScroungingScum 20 Comments

If there is one phrase guaranteed to make me laugh, even if only inwardly, it is “I don’t know how you do it”. I always laugh because, really, what choice is there? Not coping is a luxury that just doesn’t apply to disability. It’s a bit like running away, no matter how fast or far you go, you always take your problems with you.

Happiness is being able to find pleasure in the things around you, the hidden secret of the disabled world of course is that we have the luxury of time to take that pleasure. Being positive though is something different, and sometimes that can feel impossible.

Its all too easy to feel overwhelmed when dealing with multiple stressful situations, and as everyone will know, when that happens it becomes very difficult to keep away the normal niggles of self doubt. In my case that is feelings of inadequacy. Unemployment is well known for helping people to lose their sense of self worth and no matter how well much I believe that what someone does is no measure of who they are, in relation to myself, I can’t help but feel that it is.

I’ve never been bitter because I’ve worked hard to make sure I didn’t become so, but at times like now I find it so difficult not to be angry. I don’t mind having Ehlers Danlos Syndrome, I don’t see it as a why me, more why not me? I do mind what I was put through before I was diagnosed, and particularly how it’s impacted my life.

I’m now at that age where people have established their careers, and suddenly everyone seems to be having children. It doesn’t help that I come from an area, and particularly a family keen to link worth with status. It isn’t that I begrudge anyone what they have, but when I feel this way I begrudge the opportunities taken away from me.

I feel very vulnerable and very alone, not because of anything my friends have or haven’t done, but because ultimately, as we all are, I am on my own in this. And it’s a lonely place to be.


11/04/2008 08:47:00 pm BenefitScroungingScum 2 Comments

I realised today, that for various reasons I have started to censor what I write about myself. This blog has always been intended as an honest account of life lived within the benefits system and I need to get back to that honesty.

Writing helps, it is like lifting the burden of isolation which goes hand in hand with any difficult situation. I had lost track of how much.