It always looks better on paper.

Especially to the author on the other side of the table!

Being the unusual brand of wonky that I am I was unable to switch my brain off during my recent period of down time. Aside from over thinking life, love, family, history, and running away, I decided to start a new business. A business which I can run from my bed, or a hospital waiting room, bed, or whatever! I decided to turn my creative musings into physical products. Mostly gift based, but all functional, all practical, and most importantly, all personalised!

So it began. A friend gave me the first tool that I would need on my journey. Mr. Shoe’s ordered the next tool that we needed, and came on board as a partnership, and I ordered some crafty goodies to play and practice with.Three days later and there we were. A bedroom full of our new business. Nowhere to move, but a business none the less. I created, hubby crafted, we boasted, self deprecated, and basically repeated the last three steps again and again. The manufacture side of things came on very quickly and within days we were producing saleable, unique goodies for people. Wow.

Then things got a little crazy. Supportive friends all ordered from us at once, and  we were a little swamped. Things were crazy. And then flat… It all dropped off, and there we were, thumb twiddling. We realised that we weren’t using the best of equipment, and that maybe if we could output at a faster rate, a wider range, that we would start taking orders again. So we improved our methods, expanded our range, and so it began again. A rush of orders, a panic and a struggle, and then, flat! Off it dropped again. What a head scratcher. And this is how it has continued to go. Each busy run getting slightly busier than the last.

I found myself rapidly wiped out with each busy run. I’ve been struggling with my POTS, and other EDS related conditions this year. I pass out anywhere from 3 – 12+ times per day. My average is 6 – 8 times per day. The more tired I am, the more I pass out. But I’m determined to grow this new baby, and to make our new business work. I really am. But I know for sure that I am harming myself in the process. I am making my health worse by kicking back against the symptoms, by trying to be all things to all people. But I would also be worse off if I didn’t. Thanks to the austerity drive in UK politics, it is a very unfriendly time to be disabled, or out of work. My children would suffer too. They would suffer for not seeing adults who try, against all odds, to live a good life.

It was on the way home from Wales, listening to the Nottingham hustings between JC and Smith that I began thinking more about the Austeer Tory party that we’ve have endured over the past 6 years or so. And I specifically began to think of IDS and his shake up of the disability support system. Renaming and reshaping (at a great, and unausteer cost!) an allowance designed to help people with disabilities live and cope with every day additional expenses called Disability Living Allowance. It has now become Personal Independence Payment. The aim has essentially been to cut off vital help for as many people as possible to save some money by ceasing “hooky claims.” My Eighteen year old son has fallen foul to this problem, he has multiple things to contend with, and with neither of us being well enough to truly fight for what he needs, he has lost the little bit of support that he was receiving. He is less independent now that he ever was before. So much for personal independence there. I don’t doubt that IDS truly believed that his ideas would help people, as well as the system. On paper, support to help you be more independent, rather than pigeon holing you as disabled can only be a good thing, right? The problem is, IDS does not appear to have any issues which mean that he would know how it feels to be backed into a corner by a failing body. He also doesn’t have a clue how it feels to have the rug pulled from under you. Losing your truly independent self, and being limited by disability. And he certainly doesn’t realise how much independence the pressure of fighting against your obstacles, to find a way to work against all odds takes away from a person.

I am more dependent on another person now than I have ever been. I am however also more determined than ever to have a productive, contributory value in life. I don’t think that I could actually handle the disabiling impact that being a social pariah in the eyes of tabloid Britain would have on my mental health and well being. I’m now on the look out for a kindly mentor to help me get my business in order. To teach me how to take this from a little hobby shop to a livable income. I can do this. I know I can . . .

Switching the slippers for shoes!

Hullo folks! Well it’s been a while hasn’t it? I’d be surprised if many folks were left. So, where have you been ? How have you been doing ?

“What’s new in the shoe shop?” I hear you ask! “Where the hell have you been woman?”. Well, truth be told, even the healthiest of minds can feel poorly at times. With ever heightening symptoms, and an ever increasing set of educated professionals voicing out-loud thoughts and adding acronyms, I have been pretty lost for a while. Things were on top of me, so I did the only thing one can do when there are monsters at the door. I switched my shoes for my slippers and I hid in my bed. I made a great big, warm, safe, play fortress in my bed, with my supporting cast (family) around me, and we shut the rest of the world out. It felt necessary. The problem is, when you shut the world out, you shut objective second opinions out, and you shut the door on loving butt kickings. All that leaves you with are yourself and the yelling thoughts that yourself’s brain makes. And as those thoughts that yourself’s brain makes become louder and louder, optimism and positivity are drowned out. I can’t say that the place that I shut myself away in is anything like the world that a person dancing through the obstacles of clinical depression has to exist in. I wouldn’t disrespect depression warriors in that way. But I did enter some pretty dark territory. My pain specialist highlighted that much of my mind-state was governed by a history with spousal abuse, and she labelled the position which I found myself as ‘PTSD’.

I’m not totally sure what happened, or who turned the lights on and pulled back the duvet and helped me up again. But someone, or something did. And after months of some introversion, and months of being in one room (really) of the house, except for hospital visits, I got up, dusted myself off, and here I am, grovelling to my 2 lovely followers, and hoping that they will welcome me back!

Disability costs so much!

Last year I sent moonface, silky and the saucepan man in to school. Their costumes came from my hand. I bled, I bent, I dislocated and physically I paid. But emotionally we all sang. This year I sent moonface (because moonface has toffees and toffees are what makes a costume when you are 6!), Gwendaline, Harry Potter (before he was a wizard!) And The Fairytale hairdresser. Moonface was last year’s costume. Gwendaline (from Mallory towers) was a posh frock, pretty shoes and a posh hair do (though I almost had a heart attack as she showed me a video of game of thrones and said “I want that!”), and the fairy tale hair dresser was a shop bought princess dress, a posh hairdo (a Dutch braid all the way around her little head) & in the way that only my mini – mummy wonky baby girl would, a pair of knee length converse.

The children were sad. They’re used to Mummy making their outfits. Mummy was sad because Mummy used to make their outfits. Daddy was sad because Mummy was sad. It was a very sad start to our day.

I had fully intended to make them myself. That was my agenda for yesterday afternoon.  But sadly it all went wrong. My life increasingly has to fit in a window between 7am and 12 pm. Yesterday because I’d had a particularly crazy morning I had an unconscious afternoon. And when I was conscious I felt like I’d been out and got very drunk, and then very hungover. Luckily without the bill, unluckily without the fun.

They all looked lovely going in as they were. The girls hair looked very pretty and I felt pleased that I’d done that part at least,  though my bendy fingers did not thank me in the least bit. But I still feel sad. I’m used to be that Mum. Home making, cake sale bakin’, homespun happy Mum, who worships her children to the max and therefore puts her entire self into their stuff. I feel bad for seeing them sad.  I feel sad for being so bad at the moment. The loss of self is a great expense that all unwell adults have to face. It’s one of the greatest expenses I think. And one of the hardest to earn back. It’s one that’s going into my brainstorm. And it’s one that’s going into my great take – back plan. It’s also one that so few people think about when their friends or loved ones find themselves facing life changing illness. Personally, I think it’s one of the areas that a person undergoing any form of change under stress can be helped with.  I’ll leave you with that food for thought this morning. 

Shadows cast over my bedside.

Humans have a funny tendency to only notice polar opposites. We notice the exceptionally good and we notice the phenomenally bad, we seem to ignore everything in between. This rule seems to apply to all sorts of things from instruction guides such as recipes, to product experiences, from trips out to the movie that you watched on your most recent night in, from customer service experience to general day to day social interaction. That teacher at your child’s school is either a right dragon or a really lovely lady, where as the one over there who is a normal human being, some days approachable others like a bear with a sore head is also virtually invisible. The woman in the playground who stands in the corner and may talk if approached by is neither involved in all the gossip nor the most generous and lively person you could ever meet is also in ghost land with the human teacher.

This is also the case for medical professionals. Some nurses are wretched, mean human beings, others are modern day Nightingales. The ones who appear quietly for your 2 am Obs, tend to you with minimal disruption, fill in your notes perfectly and leave again are faceless, nameless beings. Some doctors are amazingly caring living saints. Others are Dr Jekyll without the Hyde side! The rest are registrars and SHO’s!  We have a little quirk when it comes to reviewing out medical personnel though, calling the customer service they deliver ‘interpersonal experience’, or bedside manner. When you’re learning about your area of health care, there is a huge focus on how your interaction shapes the lives of your clients (or for a more outdated but traditional term, patients), and how it is really important that you seek to only affect your clients lives in the ways that they have engaged you to do. So for me, as a psychologist, I would only seek to provide someone with coping strategies to help themselves move forward from a difficulty or trauma. I would most certainly be discouraged from creating the illusion of friendship as it may do harm to them emotionally when no relationship remained after their ‘treatment’ had drawn to a close. I would also most certainly avoid belittling them and making them feel inferior. But my training is, in reality, still very new, and very shiny. I have not been worn down with years of overwork, and much belittling and demeaning thanks to doctor google and a demanding set of practice standards. I totally ‘get’that there are many reasons for bedside manner to slip. The problem is, I now totally ‘get’ why bedside manner is very important to clients.

As I have previously referenced in my blog, I spend a lot of time in a lot of hospitals and Doctor surgeries. Ehlers Danlos Syndrome is a highly complex, multi systemic disability, and sadly many Doctors do not have the time or energy when they have finished a particularly demanding day or week in work, dealing with web-md induced catastrophes to try and begin to grasp Ehlers Danlos Syndrome, and the effects that it has on their patient. And I’m not even factoring trying to understand this within the context of the rest of my acronym soup. The problem is, because the General Practitioners do not have the time (and I truly believe that this is a time issue, not a competence issue) to understand the condition, they become dismissive, even doubtful. After all, one person can’t really have all of this going on. Ehlers Danlos Syndrome can’t possibly account for frequent dislocations, shitting your pants, vomiting and your feet being deformed can it ? You’re a paranoid patient and you’re not helping your situation by carrying this on. I wish that I couldn’t say that I have had this said to me by my own general doctor. I wish that I could say that this was not a direct quote. I wish that I could say that this concern has come from a mind damaged by uncoordinated care. I wish that I could say that this was not a direct quote. I am glad that I can say that I understand why my doctor felt this way. I am also glad that I have the understanding to realise what the wider issues are. But unfortunately, even with my understanding, I am unable to say that this short, snappy bedside manner I am sad to say that she cast a shadow over my bedside. I am sad to say that I have found the poor bedside manner emotionally damaging at a time when my conditions have exploded from semi-managed to having full control over me. I am sad to say that this lack of willingness to understand my condition has actually damaged my trust in my General Practitioner. Not only has it damaged my trust, it’s damaged my ability to seek help at a general level, it’s damaged my ability to seek medical care for my children, it’s damaged my emotional wellbeing to the point that I’ve lost real sleep, and cried real tears, and felt real shame and paranoia. It’s also led to me physiologically damaging myself by deliberately delaying medical care. Even though I have a good, grounded view as to why my Doctor does not, cannot and outright will not ever understand Ehlers Danlos Syndrome, or why I make these connections (with paperclip marked handbook in my hand), I cannot overcome to barrier it has placed between medical care and I. I, the biggest defender of doctors for years, when client after client called their General Practitioners idiots, and stupid, and far more offensive things, inferring malpractice (by far the most common complaint “I hate going to my doctor. He just fobs me off with pills to get me out of the door. He doesn’t really care.”), have struggled to reconcile what I know with how I’ve been left feeling. The result is a perforated eardrum, and a hyper-anxious patient.

And it is with hard experience and a very heavy heart that the importance of a good bedside manner changed from words in an academic text and a set of embraced principles and personal conduct points to a very real thing. If I could go back, do it over, and hope for a different out come, I’d have been brave and told my doctor that little comments about “hypermobility? So what, you’re hardly likely to engage in contact sports!” to a patient who dislocates fingers, shoulders and knees just by sleeping, is emotionally harmful. It’s a snowball that leads to an avalanche (especially when your patient is immobile, and stuck in bed a lot, and thus has time to analyse every little detail of the statement). I’d have asked to see another doctor. I’d have registered a concern with the practice manager. But I’d certainly not have left it. If I could have a request, I’d ask any doctor reading my blog to firstly have a search of blogs of other chronic patients because this is a thing. I’d ask them to consider dedicating a few of their CPD credits to refreshers in bedside manner, and basic psychology, and I’d ask them to remember that poor approach at the bedside casts a shadow over their patients, and eventually a stain which cannot be removed. And if I could give one big piece of advice, it would be for other patients to speak up if they have problems with the way in which a professional has spoken to them. Speaking up need not be an attack. It can be constructive, even cathartic. But please don’t do what I’ve done, bring it home, silently, dwell on it for nearly a year, and let it damage your ability to get help.

Today I have started the process of healing this damage, but it’s going to take time because I’ve let it grow from a tadpole to a great big monster.

Whoomph there it is!

Fighting back she says ? In baby steps she says ? Sensibly and slowly so that she doesn’t knock herself out she says ? My process of fighting back has started. I have a few projects now planned to try and cling to, to pull myself out of the monumental illness funk I’ve been stuck in.

One of them has just been dispatched, and I’m more than a little excited. See Shoezie-P has kicked me up the bottom by giving me a reason to focus. He’s given me a toy to play with and to start a cottage-industry business from my bed!

It’ll be a challenge. And I’m looking forward to that. Because it’s from my bed I can take this at my own pace I hope. But it just means that I need someone to tie my shoelaces together to slow me down and keep this as a sustainable thing rather than a phase or fad.

It’s so nice to post a positive entry. It’s been a while…

I proposed to me today.

My pain specialist is a goddess. She is one of my favourite doctors. She knows so much, about so much. But most importantly, she knows how it feels to be in pain, she knows how it feels to be chronically ill, and she knows how to approach patients. I always leave appointments with her feeling positive. I suspect she’s also very strong socially, as she is very good at placing compliments and comments to make you feel good about yourself, and at making you believe those compliments too!

She once told me that I had changed her outlook on coping with chronic pain. This is undoubtedly the biggest compliment that I have ever received. I had always tried to be brave, tried to carry on with a fulfilling, and tried to continue achieving, enjoying  and smiling. This last year, for a multitude of reasons, that has been taken away, either because everything has been too much at once, or because I’ve allowed it to be taken away. I feel that I no longer have CRPS, I no longer have EDS, I no longer have POTS, GDS, JFS, and three million other acronyms. I feel like just lately, they’ve had me!

It was after a particularly long, and unpleasant round of syncope and fitting, that I came round, feeling like shit, and realised that I was likely to let a member of my household down again. I suddenly had enough. Down on one knee, at least in my mind, I proposed to myself. I made a contract with myself that I’m going to start trying to reclaim the tatters of myself back from the jaws of illness. I know that it’s not going to be an easy process at all, but it’s time to try and get upright again. I know that I will never be what I was, but I’m setting new focuses, new goals and trying to entice myself into staying conscious for a little more time each day. Hanging on in here for the blog ride might be a bit white knuckle for a bit, but I hope that you’ll stay with me?

Wish me luck?

I’ll never be me again.

I’ve been more than a little all over the place lately. My blogging style gives massive hints to a lack of consistency at the moment. I thought my inability to take nutrition in was bad before. It’s suddenly worse than ever, and I am feeling every missed calorie now. I’m wiped out, strung out and flaked out all at once. I’m also fading out, very rapidly. And rather than looking awesome, like I always hoped that I might if I ever lost my excess weight, I actually look like rubbish! I’m looking old and haggared. My skin is falling off and busting open. My hair is lank, greying and falling out. My clothes are hanging off me. I thought that I was too miserly to buy anymore at the moment, ho ever I realised that my cricket bat splint was holding my jeans up!

One of the earliest things we discussed when reading psychology was the concept of identities being many and fluid, rather than being constricting and static. The problem is, while I can restyle myself with overpriced bits of uncomfortable fabric, I cannot handle a whole identity change when I’m desperately trying to cling to who I was, a long long time ago…

Fat Fairy definitely became me, I look like a haggared witch now. I think I need a Gok to restyle the inside as well as the outside! Where do I start?