Pain Management is more than just doctor's visits and medications. Ultimately it really is down to the individual to learn to come to terms with chronic pain and how to live a happy life because of, rather than despite it.
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
Congratulations to Debenhams who are featuring wheelchair using model Shannon Murray as part of their shop window campaign for their new Principles range.
Let's hope this is the first of many advertising campaigns to feature women as we really are.
One of the issues discussed at pain clinic was that of support, or more accurately lack of support from Social Services and Occupational Therapists. The latest blog from Dr Grumble talks about this issue from the viewpoint of 'bed blockers' and the halfway houses that are needed to sort out this problem. It's a good post, go and read it. Done? Ok then...
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 stupidstubborn as I am. I'm not really sure how I learned to functionally dislocate because that time is all thankfully blurry, but learn I did and I'm glad for it. At least until the time for joint replacements rolls round. Disabilities vary just as much as the rest of us, so for the majority of people once services or equipment have been refused there's nothing they can do about it. In that situation it doesn't take long for a fall to happen, or illness contracted due to poor nutrition and living standards. Which is when people end up in hospital.
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.
Not even a day into gluten free living and I remember why it annoys me so much. As far as I'm aware I don't have celiac disease but as the biopsy is a bad idea for my fragile EDS'y tissues I'll probably never have confirmation either way. I do have the Irish ancestry meaning I'm more likely to be celiac, but the only benefit to an official diagnosis would be the ability to get gluten free food on prescription and that's never going to be worth an invasive surgical procedure. I don't usually eat gluten because it makes all my EDS symptoms worse, increased pain, increased skin issues, massively increased digestive issues-you get the picture. Having gone back to gluten temporarily is a reflection of the stress withdrawing from Oxycontin puts my body under, it was the one thing I could think of that might slow down the constant poop runs. And so it did, with the side benefit of lots of pizza.
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
I feel a bit nauseous. Quite a bit nauseous in fact. Tomorrow is back to gluten free living so I have spent the past few days binging on all the scrummy foods excluded from a gluten free diet. There has been lots of pizza, vast quantities of rubbishy sliced white bread and so far this afternoon there may have been two chocolate eclairs and a slice of cake. Oh, and more pizza. No wonder Bendycat looks disgusted, she didn't get any of it.
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 criminalcannabis grower has requested I take up the position of official tester. I'm optimistic about the role, and it won't even upset the DWP as there's no pay and working conditions involve staying snuggled up in the warm until unconsciousness.
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!
