Saturday, February 27, 2010
This series is intended to be a different way of sharing our best ideas for overall pain management. Some will be practical, some funny, some serious and some frivolous. Feel free to send in your own tips and ideas.
So, singing. Sounds silly doesn't it? But singing is good for your overall mood, good for your lungs and vocal cords and in my experience produces the kind of feel good chemicals in your body that help to reduce overall pain in a somewhat more family friendly way than orgasms do. It's also great if you have any issues as an EDS'er with lax vocal cords or throat/breathing issues.
Like all these tips you can start as small as you need. If your overall condition is so poor you're confined to bed around the clock you can still have a go at singing. Whisper or mime if you have to, but give singing a go every day and soon you'll notice an overall improvement. It's all about baby steps with learning to manage pain.
And, as I sound like a strangled cat on heat when I sing, if I can do it, anyone can-so far the neighbours have not called in environmental health! The track is from my all time favourite musical Blood Brothers and will appeal to anyone who's experienced that 'tell me it's not true' feeling
Thursday, February 25, 2010
Let's hope this is the first of many advertising campaigns to feature women as we really are.
Wednesday, February 24, 2010
The reason Dr Pain is interested in things like benefits and OT's is that they play a vital role in enabling people to cope. Unfortunately, in reality the denial of benefits, equipment or care packages plays a vital role in increasing the pressure upon the already over subscribed and underfunded hidden parts of the NHS like pain clinics or physiotherapy.
Social Services departments have a duty to meet people's needs. In relation to disability or older people those needs are primarily physical, things like someone to help with food preparation, or taking medication. In practice what tends to happen is that local authorities through their social workers or OT's refuse to accept those needs, as, if they don't identify the need they don't have to do anything about it.
Dr Pain wanted to know what kind of services I was receiving, but was not surprised to hear that I don't receive any. I pay my wonderful carer privately. It's an absolute pittance compared to the value of the support she provides me. My last assessment from Social Services resulted in the loss of my entire care package as the Social Worker refused to accept that dislocating constantly meant I needed any support. I'm incredibly lucky to have someone in my life who cares enough about me to want to provide care regardless of financial recompense.
I'd previously been assessed by OT's from the local authority. At a time when I was desperately ill and underweight the hope was that they would provide some equipment to make my life easier. They wouldn't. I was assessed for a bath lift, but refused one on the grounds that I was too disabled. The OT's felt my hips might dislocate whilst using the bath lift and that would mean they, and the local authority would be liable should I have an accident. Home carer's are rightly not allowed to lift people in and out of the bath so that was another solution out. The OT's wanted to provide me with a perching stool so I could strip wash at the sink. That conveniently ignored the medical problems with body temperature and venous pooling so wasn't a solution either. Eventually I was offered a bathing service once a week in a GP's surgery some 20 minutes drive away.
Being me I turned down that option and learned how to get in and out of the bath whilst dislocating. It wasn't safe but under the circumstances seemed like the only way to go. Bathtime usually involved being on the phone to someone once I was in the water as that way should I have an accident the person on the end of the phone could call for help. Like I said, it wasn't safe.
I was at one point offered a bed raiser by the OT. These go under the mattress and help people to get out of bed. I was offered it until the OT looked at my bed, saw it was the slatted wooden type and that was the end of the bed raiser. They don't work safely on slatted beds so instead of solving that problem the piece of equipment was denied. Again, being me I learned to fall half out of bed, let all my joints dislocate whilst I still had my upper body on the mattress and stay there until I was stable enough to get up. Probably not very safe either, unless it was compared to my bathing method.
I explained all this to Dr Pain and said that I no longer wanted anything to do with the local authority as all they do is refuse assistance and create stress. I wouldn't want to get Dr Pain into trouble, so all I'll say is that from the look on his face he hears that same story over and over again.
Not everyone is as
And there they stay, because they can't be sent home to the same lack of equipment or services. Hospital beds cost alot of money. Money spent on keeping relatively well patients in beds because another part of the welfare state refuses to fund mostly vastly less expensive care packages or equipment.
Only a politician could set up such a stupid system then be able to manipulate people into believing it's the fault of the doctors, nurses, social workers or OT's. It's not, it's the fault of the politicians, regardless of party, but by the time the general public wake up to that it'll be too late.
Tuesday, February 23, 2010
The problem is that eating a truly gluten free diet is incredibly difficult at the best of times, and a complete nightmare when you can't really prepare your own food. If you can cook everything from scratch eating gluten free is a bit time consuming but overall a very healthy way to eat. If you have spazzed up joints meaning you're a danger to yourself and others with cooking utensils then eating gluten free is to put it mildly, challenging.
The past couple of months eating gluten made my life so much easier. Even on the worst days toast is easy to make, and ready prepared food always available. If you can't eat gluten that rules out all but a few pre prepared foods, as gluten creeps into almost everything these days. There are gluten free ready meals available but generally they are very high on cost and calories as fat is used as a binder instead of gluten, and very, very low on taste. A bit like spending your time trying to chew expensive cardboard. Though, the cardboard probably tastes better and is almost certainly lower in calories.
I've recently discovered a new range of pre prepared foods from Stewed. They are on the pricey side at roughly £3.50* a tub but the whole range is gluten free and unusually tastes really, really delicious. My review of them is over on Pushing Our Buttons
*currently on offer in Sainsburys for about £2.50
Monday, February 22, 2010
Poor Bendycat, 17 is old for a cat, and this cold weather is hurting her. I know because she behaves in exactly the same way I do when in pain, gimping from room to room of the flat emitting pitiful yowls as she goes. At least her medication works well, so she'll be fine in a day or so and I'll still be contemplating the tuna/metacam cocktail myself.
I need to stop eating before I start on the furniture.
I suspect the reason I forgot to blog about Pain Clinic is that it wasn't especially interesting after all that fuss. I arrived and had just enough time to pop to the loo before I was called through-it must be the most on time hospital clinic of any. Ever. There wasn't even enough time to take BogOff photos.
I was a bit nervous when Dr Pain started to ask questions about how the Ehlers Danlos Syndrome was diagnosed, as that's often a precursor to a doctor taking it upon themselves to insist I'm not that flexible. Fair point if you're comparing me to an actual rubber band, but less so if compared to a functioning human being. However, Dr Pain was just curious and further endeared himself to me by insisting none of the pain clinic staff have any idea what it really feels like to live with chronic pain. The plan to continue slowly reducing the dosage of Oxycontin by 10mg every two to three weeks was confirmed and another appointment made for three months time, by which I'll hopefully be Oxycontin free. Like I say, hopefully.
Somewhat stupidly I forgot to bring up the subject of overall pain management, but as it's not really going to be possible to get an accurate idea of what kind of pain control I'll need until the effects of the Oxycontin are out of the picture that's probably sensible. Unfortunately this is all coinciding with the most significant cannabis drought in months. Fortunately some nice, slightly dodgy, but compassionate
The most interesting part of the whole pain clinic experience happened when I was leaving. My local hospital has the pay at a machine located not next to the parking barrier system, which is an absolute nightmare for anyone of limited mobility. Being wise to this before I left the clinic I asked the nurse how far it was to the machine. She told me 'it was just there' which wasn't overly helpful, and insisted on confirming how 'just there' it was by taking me to the window to show me. A further 'but it's just there' was the initial response to my asking if someone could perhaps walk to get the ticket for me please. In the end I had to very specifically state that although, 'yes, it was just there, just there was further than I could walk' before the penny dropped and she agreed to ask the Healthcare Assistant (HCA) to get the ticket for me.
The HCA very kindly did go and purchase the ticket on my behalf, and I was particularly comforted by her statement that 'I really was in a bad way wasn't I' when she saw me walking. Most people just comment on my shiny red boots!
I hope you all find it useful, and if anyone wants to send us products to review for a disabled market please email us on email@example.com
Saturday, February 20, 2010
It's no exaggeration to say that without the likes of Professor Bird, myself and many other bendy people would not be here today. Prof Bird provides the kind of specialist input that is vital for bendy people, and almost impossible to find, not just in the UK but throughout the world.
Please take a moment to sign the petition supporting the continuation of a specialist Ehlers Danlos Syndrome and Hypermobility Syndrome service at Leeds Chapel Allerton. After that, cheeky though it is, if you could forward it to anyone you know, asking them to sign I'd be eternally grateful.
Thursday, February 18, 2010
So, it was date no. 2 with Dr Heart last night. Ably assisted by my lovely neighbours I managed to put some kind of meal together. Actually that's a complete fabrication. I did manage to do the actual buying of food part, but the rest was entirely down to my neighbours. I did consider serving my favourite meal of oven chips, baked beans and grated cheese but felt that probably wasn't going to go down well with someone so health conscious. What on earth someone so health conscious sees in a spazzed out pothead who semi permanently stinks of muscle rub I don't know, but he seems to and even brought chocolate. He's even texted today to send his compliments to the 10 year old chef.
Obviously this is doomed as he's far too nice.
Back to pain clinic. I've sort of, kind of got a plan. A plan that exists of more than an all out free fall panic. My appointment is with a doctor who I've seen previously. Before I was diagnosed with EDS and was a mentally nuts attention seeker. I'm anxious about the whole affair. There's so much pressure on doctors to be able to 'do something' in this kind of situation that it often results in that frustration being taken out on the patient. I've learnt to avoid that by making it very clear I have no expectations of miracle cures or even answers, just working to find a way forward, but the whole pre diagnosis thing is making me fret. Big time. These days I don't actually have to see any of the doctors who so judged me, which is fortunate as I had to in the early post diagnosis days and it was always an unmitigated disaster. This particular consultant certainly never labelled me as attention seeking nor treated me with anything other than courtesy, but still, it's probably not going to be the easiest situation for either of us.
Back to the plan. It's to keep reducing the Oxycontin in 10mg increments every 2-3 weeks. I need to find out if Oxycontin comes in 5mg doses as the final jump will be too difficult otherwise, and if not to try some Oxynorm (the immediate rather than controlled release kind of oxycodone) I also need to get something, not a controlled drug to try and limit the pain as I come off Oxycontin altogether. At the moment I'm leaning towards some form of codeine, and will have to wait and see if I can tolerate it without being a total space cadet.
Actually, I'll be happy just to get through the appointment without anyone getting upset about anything. Low expectations are the way to go!
Monday, February 15, 2010
It's been a funny few days for me, almost as if, and not wanting to tempt fate in any way, but almost as if I'm a 'normal' person doing 'normal' things. Sorta. Being quizzed by a complete stranger about your sex life probably isn't that normal when I come to think about it, but it was something to do on a friday afternoon.
Though I'm enjoying noming my way through all sorts of foods I usually don't eat, I'm aware my time is up on the current gluten binge. The blistering on my feet and thrush should've been a clue, but really, when compared to pizza what's a little vaginal itching between friends? In that spirit I took my neighbour's daugther to MaccyD's on friday evening. She's a lovely kid and as one friend later commented it must've been nice for me to go out with someone shorter than I am (neighbour's daughter being 10) It probably would've been if said 10 year old hadn't recently grown about 4 inches taller than me, but we didn't let that spoil our fun and the growth spurt helpfully provided the ability to eat most of my meal as well as it's own.
Then on Saturday I went to meet Jenn for a coffee and serious discussion. About men, obviously, there are no other serious issues to be discussed on a Saturday afternoon. That turned into a mooch around the local shops, hurrah for wheelchairs, then on bumping into another friend a drink and catch up. Lovely.
I'd arranged to meet a date for brunch on Sunday morning, having not initially twigged it was Valentine's Day. Fortunately the place I'd chosen to meet was B&Q so most of the advertising induced romance could be avoided. Classy chick me.
Now, the last internet date I went on I found myself realising part way through that the guy was in all probability a gangster. An old fashioned, 'honest', won't knife you in the throat gangster, but still, probably a gangster. He was charming and perfectly gentlemanly, but I'm not really up for the role of moll. My standards are high, oh yes. High, but not very accurate it would seem, I may have been spending much time fantasising about an anaesthetist but I had to settle for a cardiologist. On Valentine's Day. I'm really not making this up, honest-if I had that kind of imagination I'd be working for Mills and Boon rather than scrounging off the state.
Despite my cunning techniques to put the guy off, including but not limited to, spitting down a didgeridoo and insisting he help relocate my thumb the date seemed to go very well. Well enough for brunch to become lunch and then dinner anyway. There may also have been some texting today. Reviews are so far overwhelmingly positive, but I'll let you know for sure once I've had the opportunity to throw up all over his house. It's my new number one way of judging a man's character. Ability to be turned on by the scent of cannabis and deep heat can only be a bonus.
Saturday, February 13, 2010
But really, Squee! The Guardian! Wonder if they've cleaned their toilets yet?
*lower third of the page, on the right hand side
Friday, February 12, 2010
Now, politicians might tell you this is easy to do, and perhaps they'd even quote some relevant legislation to prove how they introduced such access, but in practice something different happens. Each individual Primary Care Trust is responsible for paying the cost of out of area referrals, and it is more expensive for them to fund referrals out of their own area than in. This leads to a post code lottery where some PCT's will fund some out of area treatments and some won't. The rationale is supposed to be that the PCT only has to fund out of area treatment if there isn't the relevant expertise within the PCT area.
Some PCT's, such as my own, are excellent at funding out of area referrals, and so long as they are backed up by sound reasons from the referring doctor (usually a GP) the funding goes through automatically without the patient having to do anything further. However, in some PCT's the opposite seems true, no matter how valid the reasons for an out of area referral the PCT will obstruct it. Usually by spending money on sending the patient to various referrals within the area, all with consultants who lack the vital area of expertise but who are consultants in the same overall branch of medicine. The need to spend money on refusing to spend money is typical the kind of bureaucratic nonsense bringing the NHS to it's knees and costing us the taxpayer dearly.
Which is nowhere near the cost to a 19 year old girl living with so much pain that inside she feels like dying. Attending a pain management course would change D's life. Sure, it's possible to learn all the skills for yourself, but that can take years; years out of education, years out of employment, years being supported by benefits. Expensive years. All for the sake of saving the money a 3 week course would cost.
Thursday, February 11, 2010
As there have been reports locally between parents of the children in this age group that some of the girls have been having strange friend requests and other approaches made to them by adults on social networking sites, and because the man had actually chased the girls we phoned the police central control room to report the incident.
Merseyside police responded brilliantly. They took a detailed report and description over the phone, and whilst that was in progress dispatched a car to the area to see if they could spot anyone. They'd also received a report from another parent concerned the same man may have approached girls of the same age in a park a few minutes away from where the girls were initially chased. A female police officer arrived at the house to talk to my neighbour's child whilst we were still on the phone giving details of the incident. Whilst she was there she spent some time explaining to the little girl the dangers of strangers, reassuring her that she'd done the right thing by running home and calling the police and to listen to her mother in future.
The police often get negative publicity about not responding to low level criminal incidents or being too busy to attend, but very little praise when they get things right. So, thank you to Merseyside Police for responding so quickly and appropriately.
Wednesday, February 10, 2010
“We the undersigned petition the Prime Minister to recognise the vital support that Attendance Allowance (AA) and Disability Living Allowance (DLA) provide to disabled people, and to ensure that these benefits are secured and are not removed as part of any future reform of the social care system in England.”
Typically it is difficult to understand so I thought I'd have a go at translating it, the original government response is in the black text, my translation the blue italics;
The Government understands that disability benefits provide an important means of financial support for severely disabled people who have extra costs as a result of their disabilities.
The government accepts the link between disability and extra financial costs. The government know disability benefits are one but not the only way of providing that financial support. The government are making it clear this support will only be for severely disabled people and so indicating it will become increasingly more difficult to be eligible for such support similar to the change from Incapacity Benefits to an Employment and Support Allowance.
We also know the care and support system we have at the moment is not sustainable.The government is broke. The current care and support system are expensive and seem like an
By 2026 population estimates show that there will be double the number of people aged over 5 that there are now, and that the number of people over 100 will have quadrupled. In 20 years' time, we expect over 1.7 million more adults to have a need for care and support.
The government like to use statistics to sound scary and give the impression 'something must be done' People are living longer and have more need for care and support.
We need to reform the care and support system radically to meet these future pressures. In a reformed social care and support system, which offers more support to older and disabled people, we are looking to see if bringing together the new care and support system and some disability benefits into a single system may be a better way of providing support.The government are intending to plunder the existing system of direct financial benefits to disabled people in order to fund this and be seen to be 'doing something'
However, we will only do this if we can better support the needs of older and disabled people, and we have ruled out bringing Disability Living Allowance for those under the age of 65 into the National Care Service.
The government will go ahead with their plans to remove Attendance Allowance as a financial benefit. The government have been surprised by the level of protest about Disability Living Allowance so for now want to give people the impression that it is safe.
Please note the government are stating they will not bring DLA into the National Care Service. The government are NOT stating they will keep DLA
Whatever the outcome of the consultation, we want to ensure that people receiving any of the relevant benefits at the time of reform will continue to receive the same level of cash support under our new and better care and support system.
If consultation shows that integrating some disability benefits into a simplified system is the right approach, we would want to ensure that the future care and support system retains and builds on the main advantages of the current disability benefits system.
The government intend to spend vast sums of money on consulting to get the answers they want regardless of the views or needs of the actual disabled people. These advantages will be what the government pays the consultants to decide them to be, therefore allowing the government to go ahead with their original plans.
We know that disability benefits are popular expensive because they provide a universal entitlement are not means tested which does not depend on where a person lives or subject to a post code lottery, they provide a cash budget which can be spent on the services someone wants, and people often but not always use them in ways that help them to stay independent and well for longer. The government ultimately wishes to remove the power to spend from the individual
These three aspects - a universal system that is consistent across the country, flexible methods of payment through personal budgets ie not in the form of direct financial benefits but in the form of an overall 'package' assessed by the local authority and investment in prevention the government is not entirely sure what this means, but thought it sounded good and that you wouldn't know either - will all be important components of the new system.
Tuesday, February 09, 2010
The amount of benefits being UNDERpaid has also increased from £800 million in 2004-2005 to £1.2 billion last year.
I wonder if we'll see the BBC making prime time programmes about this issue in the same way they love to do for benefit fraudsters? Somehow I doubt it....
The government will provide £55million to fund this project. The government also want to make badges harder to forge....which is ironic considering their new 'tamper proof' badges fall apart within days, unlike the old 'non tamper proof' badges which not even the most determined 3 year old could get apart. Let's hope that £55 million gets spent more sensibly!
Monday, February 08, 2010
Sunday, February 07, 2010
Thursday, February 04, 2010
In other, equally unexciting news I finally got around to filling out the application for a Community Care Grant. Actually my neighbour filled it out, and I just had the joyful experience of listing all the reasons I am a cripple and why that means I should get grant money. It was almost, but not quite as much fun as filling out a DLA application form. I'm applying for a grant as I'm desperate for a Tempur Memory Foam Mattress and I've already wasted enough money on cheaper versions which don't work. I don't think Tempur would be nice enough to send me one for free, but after the earrings I'm ever hopeful. For the sheer hell of it I put a wish list of all the crip related things currently being saved up for and hope the CCG people take pity on me. Being a beggar is massively over rated.
I'm going to become an MP instead. It's absolutely the
Tuesday, February 02, 2010
Actually, I thought it was a bit odd at first. Cynical creature that I am I had to wonder if this was some new kind of elaborate phishing scam to seek out bloggers personal information. After all, this is not the world's most popular blog...and although there is a definite toilet fetish, it hasn't really included jewelry. No, not even how hideously ugly most medic alert jewelry items are.
This jewelry is definitely of the blingtastic variety. Medic alert jewelry has improved in the past few years, but blingtastic wouldn't be the first word that springs to mind to describe it. Not even a teeny tiny bit bling. And, well...I like bling. I simply refuse to wear something like this, let alone pay silly prices for the impractical and still ugly gold or silver versions. Having said that, if anyone wants to send me medic alert jewelry for free I might have to reconsider that. Until such time I'll carry on lusting after a diamond encrusted medic alert belly ring. A girl can dream!
But, back in reality there was a whole website of shiny, sparkly delights for me to pick from. Being incapable of making a decision about anything it took me aaaaages to decide. Eventually I settled upon a pair of very impractical but very ostentatiously shiny earrings. I must've been a magpie in a previous lifetime.
Within a few days the earrings arrived completely disproving my blogger phish theory. Getting free stuff beats cynicism any day.
Thank you LuShae Jewelry all I need now is somewhere suitably blingtastic to wear my new earrings!