Showing posts with label medications. Show all posts

The scrounging immigrant drug addict also known as Pete.

There is much talk of those most topical british scapegoats-scroungers, addicts, workshy feckless disableds and immigrants. In an exclusive story set to make the daily fail weep with prejudiced, crocodile teared joy I bring you a tale of addiction, loss, tragedy, grief...and possibly ingested insect poo.

Are you sitting comfortably? Then we'll begin...

...Once upon a time in a land far, far from here* a family fretted about inflation and the loss of opportunity. There was no work for ordinary folk like them and the children cried with hunger. Winter was approaching with huge energy costs and the future seemed bleak.

So, a plan was hatched-the oldest son, a strapping young lad born when food was plentiful, would be sent ahead to the land of free benefits and all night boozing. There would be work there, money to send home to feed his starving younger siblings & hope of a future fit for them all. The family gathered their meagre possessions in an attempt to equip him for the journey and bid their prodigal son a teary but hopeful au revoir.

It was a long and exhausting journey. The nights were cold, the days short and the people along the way hostile to strangers. Finally, just as he thought he could continue no longer the oldest son saw distant lights and smelled the heady aroma of food.

Summoning the last of his courage, the starving young man slipped across the unguarded threshold and collapsed, temporarily overcome by the warmth and new, strange sensation he couldn't place fluttering in his stomach. At first he thought it must be hunger but that had become a constant burning accompaniment before he'd even left home. No, this was something different, something he'd could barely remember from those heady childhood hours of plenty - hope.

Stunned by the sight of such plenty the young man's senses reeled. Only thoughts of his family still starving at home and the youngest children disabled by malnutrition spurred him on. Somehow he dragged his exhausted body closer to the tempting smell of sugar laden calories.

Eventually he made it within touching distance of the food and was astonished to find this a land of such plenty the food was unguarded. Overwhelmed by the need to feed he threw caution to the wind and dived headlong in to gorge himself on the sticky, sweet nectar. He felt sure it was so plentiful and so nutritious he would soon be restored and able to work to support his family. That is, as soon as he was full and able to have just a little nap as the food was making him so very, very sleepy....


Pictured, a bottle of oramorph solution with the oral syringe adaptor removed from the neck in the foreground of the photo. With pincers up (they were down when the adaptor was in the bottle) in a 'died happy' posture there is a very obviously dead earwig/unidentifiable pincery insect.

And there he was found, face first in a bottle of morphine. Without even an ID card to trace and inform his starving family back home that help would not be coming. Adding to the faux moral outrage was the knowledge that he had occupied the oramorph bottle for quite some time, probably accounting for the slightly unusual, crunchy texture occuring when placing the syringe into the syringey receiving bottle top thingummy that was dismissed at the time as poor people's spines crunching under the weight of austerity measures.

As to whether the oramorph or the ingested insect poo is responsible for this tale you'll have to decide for yourselves. There was a moral in there somewhere...I think...but like the earwig** I'm feeling awfully sleepy now...




*my money's on the back yard, there's all manner of illegal immigrants living in the plant pots and an entire family of snails have colonised the gnome.
** I strongly suspect this is NOT an actual earwig but an imposter insect impersonating an earwig that I don't know the proper name of. So, we'll call him Pete.

Spoilt Rotten

A few weeks back, or maybe days or even hours, my concept of time being about as accurate as my proprioception, an American facebook friend made some comments about their concerns of the consequences of a socialised medical system. I responded to say the NHS was the thing we British should be most proud of, then promptly forgot to give an explanation of why. 

It niggled away at me though, how to explain to people who've never had it's benefit, and to those of us who've had the benefits for so long we take it completely forgranted, what a wonderful, valuable institution the NHS and whole concept of health care, free at the point of need truly is. 

I'm under a great deal of pressure at the moment, having decided that the best option to surmount the difficulties with access to my current flat is to move to another flat without access problems. So, over the next month I'll be moving home and filling in my DLA application as my current award runs out later this year. Moving house is supposed to be one of the most stressful things anyone can do, but frankly it's a sunny stroll in the park compared to a DLA form. That stress has meant that when I found myself struggling more than usual to get basic tasks done, and finding myself short of breath I pushed it to the back of my mind and vowed to be a bit more careful about resting when I need to. 

On Friday I went to my physiotherapy appointment, and what had not been obvious to me, was fortunately immediately obvious to J my physiotherapist. I explained I was finding breathing increasingly hard work and exhausting, that I could only wear a bra for an hour or two before my ribs collapsed under it and breathing got even more difficult. When she examined me J found that my ribs were in various positions, none of which would be found in an anatomy textbook, that my thoracic spine was fixed and rigid, and that my diagphragm was stuck and unable to move properly. Half an hour later J had worked her magic, released my diaghragm and spine which meant I could take a full breath. Unfortunately all that inability to breathe properly had allowed my lungs to fill up with gunk at the bottom and as soon as I could move enough to breathe it was evident I had a chest infection and needed antibiotics. J and I agreed I needed to see a GP before the weekend and that if necessary she would be available to explain to the GP what treatment she'd had to provide. 


When I left J I went straight to my GP practice, and got there close to 1pm on Friday afternoon. Like most GP's they were fully booked, but the receptionists know me, like they do all the patients with frequent need to see the GP and knew I needed to be seen that afternoon so managed to fit me in for a couple of hours later. They'd have got me to sit and wait to be seen sooner but my GP was out on home visits. 


I went back a couple of hours later and saw TopDogGP. As it was my own GP when I started mumbling about dislocated ribs and shortness of breath he didn't require any explanation of how EDS could cause such problems, nor did he need to bother listening to my chest as the whole practice had been treated to my 'barking' as I waited. I left a couple of minutes later with a prescription for some Keflex, codeine linctus and instructions to use lots of steam and if possible take some of the leftover Oxycodone* to suppress my cough reflex. Half an hour later I had my prescription filled and was back at home. 


The NHS does acute care brilliantly. I was seen, diagnosed, treated and prescribed for all in the same afternoon. I did not have to pay to see my GP, nor for my prescriptions**. Had I needed it I would have been sent to hospital in an ambulance, admitted and treated all without needing to worry about how much it would cost me, whether any insurance policy would cover it, whether there would be any excess to the insurance, or whether I could access further specialist treatment. As the person who asked the original questions about the NHS is an organ transplant recipient, had I been unfortunate enough to be so unwell I needed I transplant, the NHS would pay for all my care, treatment, therapies, medications and if a suitable organ could be found, the transplant, the recovery and required medications. For the rest of my life. For free at the point of need. We're so used to that in the UK that we have no real idea what the rest of the world would give just to see a doctor, let alone have access to essential medicines. 


What the NHS does less well is treatment for chronic conditions. I have to pay for my physiotherapy privately because the kind of specialist physiotherapy for conditions like Ehlers Danlos Syndrome is not well provided. I could see a general rheumatology physiotherapist on the NHS but they would not neccessarily have any expertise or experience in treating EDS, or even generalised joint hypermobility. 


As someone with a relatively rare chronic condition I'm more exposed to the gaps in NHS provision than your average person. I have struggled with overly complex bureaucratic regulations governing who exactly can have what type of wheelchair and when, with limits on treatments such as physiotherapy or occupational therapy which make my life more difficult and the overall bill to the state in terms of benefits more expensive. Deficiencies in the system which need attention and thought to discern how to make them more accessible to those who need them at a cost affordable to us all. It can make my life, and the life of those with conditions like mine more difficult to navigate, but, frankly that is a small price to pay for the incredible privilege of being able to see a doctor whenever we need, without having to worry whether or not it's affordable.


*I ignored that part!
**prescriptions are dispensed free of charge to those in receipt of certain welfare benefits, otherwise there is a charge of approximately £7 per item.

I'm sorry, I can't.

I'm sorry, I can't. Even typing the words catches in my throat. Or fingers, as my throat can't actually type. Whatever. I think those four small, seemingly innocuous words are the hardest of all to say, and every time I have to utter them a tiny part of me bleeds inside. Practised in the dark arts of loss, I momentarily acknowledge the pain, that it is in fact all a bit shit, before turning my back firmly and focusing on how good I have things. 


I'm still free of Oxycontin and it's still slowly improving. I feel better than I have done in months, more alert and more interested in doing things. At times the pain is utterly overwhelming but it's a natural pain, not a drug induced one. I'm managing to do 15 minutes of stretching and physio most days, using the episode of Postman Pat BBC2 helpfully show every morning to distract me from how boring it is. Some days I'm also managing a death walk, some days not. I'm generally managing to read more of the things I'm interested in during the day, to have friends come round for a coffee and to eat a few times a day. Oh, and stay out of bed til around 9pm most evenings. These are all very good things and getting done far more consistently than they have been since the whole Oxycontin withdrawal started, but at the same time they aren't exactly the most exciting or energetic of things and they're draining every last spoon I have. 


I'm tired of having to make excuses to my friends about not being able to come to whatever it is they've invited me too. Tired of feeling guilty about not being able to do things, even though none of my friends ever make me feel that way. I'm so excited about actually feeling more awake, more able to get through each day that fortunately that far outweighs the times I feel this sadness and guilt. Disability is so intimately connected with loss and benefit that it's easy to forget sometimes the small cuts hurt the most and need their own time to heal. 


Today was a deathwalk day. It went pretty damn well actually. There's quite a few of us who deathwalk down by the beach, linked by an intangible, intimate understanding of each other, whilst remaining nameless strangers. One remarked upon how well I'm doing, that just a few weeks back I was literally dancing on the spot as I tried to progress. I balance with my arms as I become more fatigued and with music in my ears it can feel as well as look like a dance. There were kites being flown, the air was clear and fresh and the world looked beautiful. Working so hard at movement can produce the kind of euphoria any sportsperson will recognise, a simple joy of being. 


And, whilst I again had to say 'I'm sorry, I can't' to one thing, I have been able to say 'yes, I'd love to' to another.

'Are' Patient No Longer

Monday seemed to be a turning point after which the whole withdrawal thing started to ease off. GangstaGuy drove me to Leeds for my MRI scan in the afternoon and made the whole day possible. The scan only took about 20 minutes but the radiographer still had to ask me three times to try and keep still. I'd been expecting it to be much worse, but as GG had done the driving I was able to sedate myself before the scan started.

The good news is the scan showed my lumbar and sacral spine to be essentially normal-yeay! The not quite as good news is that the dodgy hip, pelvic and neck areas that I was concerned about weren't actually scanned at all. Fortunately I am used to the nonsensical doings of the NHS so was fairly unbothered. GG is not used to such illogicality and became quite indignant over the whole 'not seeing a doctor to get the results' part of events so I've opted not to break it to him yet that he drove for six hours and they scanned the wrong bits.

The builder saga is continuing so I had to sort something out about moving the scooter as it was still in the charity shop. The scooter has now gone to live at lovely carer's house until I can get access and storage sorted at my flat. It was about 2 miles from the charity shop to lovely carer's so on Thursday I rode the scooter there and GG drove his car there...in 200 meter or so increments. He and lovely carer were quite concerned that I might get stranded with a flat battery and no mobile phone signal. It must've been fate, as I spotted another mobility scooter in a charity shop and GG's mum has just had her wheelchair stolen. For the second time. I mean, really, what kind of person steals a wheelchair?


While we were out I went to collect my prescriptions. I was initially resigned when they weren't ready, but the dislocated hip whilst we were stood waiting pushed me fairly quickly into a bit annoyed when it turned out my prescriptions weren't there. I blame the uniquely bendy 'oh god I'm about to fall over why the hell am I pirouetting' manouevre which nearly took out two people for the dislocated hip, as for who's responsible for what happened with the prescription I'm not sure. I use the repeat prescription service run by Boots. They'd gone to collect my prescription when I phoned to order it, but when they took it to my GP's they received a note informing them I was no longer a patient at that practice. Which was news to me. The girl serving said she had thought it very strange as the note read 'not are patient'.


So, I had to go to my GP practice. I was greeted by the evident author of the note who shrugged a few times, said he didn't know and looked a bit hopeless, but did manage to follow the had to be repeated three times instruction to phone the practice manager. The practice manager told me that my name had been on the list of patients leaving the practice sent by the nameless NHS bit that deals with such matters, and that, although several of the ladies who work in the practice had been adamant I wasn't leaving they'd had no choice but to parcel up my many, many volumes of notes and send them away. This was all happening late on Thursday afternoon and at the time I thought I didn't have enough medication to get through the weekend so was a tad stressed and sore. GG was certainly getting a crash course in the inner workings of the NHS. He seemed stuck on the point that sick and disabled people shouldn't have to deal with bureaucracy on top of actually being sick and disabled. He'll learn.

The Practice Manager said they'd sort out re-registering me as a patient, and to prevent any potential issues should I need NHS treatment whilst the paperwork is being sorted out, registered me as a new patient anyway. I still had no prescription, which needed to be collected and taken to the pharmacy late on friday afternoon...by which time I didn't have the spoons to do it. For a variety of reasons this kind of situation is common, so, with the kind of military planning familiar to all disabled people and carer's, I re-order my prescriptions several weeks in advance to avoid running out. Fortunately being so organised meant I had just enough medication to make it through the weekend. Back before I was diagnosed with EDS when I was desperately trying to hold on to my job I would have to go back and forth repeatedly between GP practice and pharmacy to try and sort my prescriptions out every month, which could only be done during working hours and often took up an entire day. Whilst DLA can and does pay towards the additional financial costs of disability, such as the petrol to go repeatedly back and forth sorting out this kind of problem, there is no way of compensating for the many human hours spent on such tasks which are a significant yet unseen barrier to work. 

Dis a Disabled

It's a good job I've spent the past 5 days in Oxycontin withdrawal as it's kept me too busy rocking in a ball whimpering pathetically to focus much on the new ConDem government policy of 'dis a disabled'. Bit like 'hug a hoody' only more likely to end in borrowing the money for a one way trip to Dignitas. Actually, maybe we cripples need to take heed of the media and form that all powerful disability lobby they keep banging on about, we could have assistance dogs instead of pit bulls and use sugru to make accessible knife waving technology. Having seen the poor success rate of the deaf mugger I've rejected street crime as an option, but I'm not ruling out becoming a master criminal if I get kicked off benefits. I'm not sure which is more attractive, prostitution or drug dealing? There's enough of us to form a decent cartel, though we might find hiding amongst the local population a tad difficult as so few places have accessible toilets.

After dithering about the best way to carry on with withdrawing I decided to go for the tried and tested 'fuck it' approach and simply didn't bother taking another Oxycontin. That means, I've been Oxycontin free for um, 108 hours and counting. Thursday was grim, so much so I've forgotten all of it, which is probably for the best. Friday I dragged myself to physio to be greeted by the lovely J exclaiming 'oh my god, what's happened' which seemed a fair enough statement under the circumstances. I wasn't sure I should even attempt to go, but I'm very glad I did as J worked some magical physiotherapy wizardry on my back and shoulders, without which I doubt I'd have made it through the day. Thank goodness for DLA covering these additional expenses as without that treatment I may well have ended up in A&E and had to be admitted to hospital over the weekend, which would be vastly more expensive than the £47.80 a week paid to me in the form of Middle Rate Care component*. Saturday was a bit easier and I was able to let the sun burn into my back and carry on the good work started by J, then yesterday passed by in a blur of not actually being able to focus or settle on anything. 


Stupid jokes aside, coming off Oxycontin has been pretty much the most challenging, arduous and painful thing I've ever had to do, and I'm only having to deal with the physiological aspects of dependance. Giving up smoking was a luxury holiday in comparison to coming off Oxycodone. Opiate withdrawal messes with your emotions, your sex drive, your physical condition and that's not even touching upon the Trainspotting style incidents of vomiting so much you long to fall down the toilet into oblivion, or hallucinated babies crawling across the ceiling. I'm proud to report I didn't hallucinate any babies but there were a fair few other moments even the worst acid trip couldn't acheive. I can't imagine how it's possible to successfully come off opiate drugs with a mental addictive component in addition to the physical symptoms but I can say that until we have a radical rethink of how we deal with addiction in Western society the problem will only get worse. The only thing that seems to help is to be in control of one's own rate of withdrawal, which is perhaps why the pilot studies looking at withdrawal success when addicts are initially given unlimited access to heroin have been so successful. 

It's off to Leeds later today for the MRI of my hips, pelvis and spine. Fortunately GangstaGuy is able to drive me, otherwise I'd probably have had to cancel the appointment. It will be good to finally find out what the congenital deformities in my hips and pelvis might be, but after a worrying email over the weekend from another bendy patient advising me that Professor Bird's retirement has been brought forward to July**, I'm just hoping there will still be someone with the relevant expertise to read it.  Oh, and that I can keep still long enough to actually have the scan!




*For anyone who's interested, one 30 minute physiotherapy session costs me £30. This particular kind of physiotherapy is not available on the NHS. 
** I don't have any details to confirm or deny this other than an email informing me Professor Bird's secretary has had to phone people to tell them they will no longer be seen as his retirement has been brought forward.

Inanimation

Having carefully considered the advice of both TopDog GP and Dr Pain to remain on a twice daily 'holding dose' of 10mgs of Oxycontin and rejected it as recklessly sensible, withdrawal continues. I last had any Oxycontin at 9pm yesterday, so far today has proved challenging. 

There's the weird prickly feelings in the soles of my hands and feet, the stabby all over little white hot needles reaching up through my skin and my all time worst enemy, withdrawal induced pain in the fascia across my back and shoulders which is so intense I've spent lots of time fantasising about the ability to stick a knitting needle into it and stab madly. It's probably for the best that I'm too unco-ordinated to even consider anything with needles-when I was at school I managed to sew whatever rag I was in the process of destroying not just to my skirt, but all the way through and into my leg. 

Fortunately there hasn't been any puking or even pooping, so far. I'm confidently predicting I'll take that statement back at approximately 6am tomorrow. There has been a fair bit of irrational anger, mostly prompted by my inability to work itunes. I was cross enough to punch the laptop, which then made me more cross because I couldn't. Perhaps that's why I walked face first into the door. Again. Then opened another one into my face for good measure. It's obviously a conspiracy of inanimate objects to teach me not to fume impotently at them...the sat nav leapt off the windscreen and hit me in the face at the weekend.

Finding builders to do the adaptations needed to bring my mobility scooter home has proved tricky so far. It turned out my landlord was too booked up to arrange the work himself, his wife had volunteered him without consulting him. Which is why my mobility scooter is still in the store room of the charity shop. I have spent much time despairing of the lack of decent Polish builders in this part of the world only for fate to smile upon me and send a whole host of semi clad, muscle bound English builders to work a few houses away. I've long held the opinion that stealing other people's builders is the way to go. Be nice and co-operative and suddenly they're your builders. Admittedly the boobs are probably as much help as the being nice, but let's not split hairs. The work that needs doing is annoyingly complex due to a sloping road and raised ground height so the job is beyond even the combined forces of GangstaGuy, Ben or Roland. Every builder I've managed to get an opinion from so far has scratched their heads and mumbled alot before being too busy or too expensive not to get another opinion. So I'm crossing my fingers that in addition to trying to chat me up, the nice builder man in charge of the semi clad muscley ones is serious about the work. His comments about the the government and local authority all being a shower of shites pissing in the same pot mean I'm cautiously optimistic.


As I am about the Oxycontin, the end of this awful process is in sight. I should be taking another 10mg dose at 9pm tonight, having skipped this morning's tablet. I'm not sure if I'm now so far along that I'm in the last stages of withdrawal or if Oxycontin stays in your system so long that my levels will drop sharply if I skip the next dose as well and just carry on. What I am sure about is feeling distinctly odd. I guess I'll find out about the next dose soon enough!

Falling off my soap box

As anyone who follows my prolific but nonsensical tweetings already knows....I got my mattress yesterday! It's official, I'm in love with Tempur. BendyCat seemed keen too, she being a tad arthritic of the hip, but then bed is her favourite place anyway. I think she's still there now. 

But, Tempur. Omigod. Tempur. "How shall I compare thee to a summer's day. Thou art more lovely and more temperate"* Did I mention I love Tempur yet? Except for one thing, Tempur, your website is terrible. Get that sorted and a twitter account set up immediately. It's no fun tweeting endlessly about my love for you when you're not there to benefit from it.  I'm boring myself back into bed droning about Tempur so I'll shut up. After this next declaration of love at the least. I tried other memory foams, oh how I tried, Tempur being about a zillion times more expensive than the other memory foam mattresses and toppers available. There's a reason for Tempur's high price, and it's that it doesn't feel like other memory foams. With most memory foam products they mould quite nicely to your body in a soft kind of way, but they aren't particularly supportive. Tempur somehow manages to combine soft moulding with a secret wizardry which means your body is well supported in it's moulded place. Even someone like me who could out sleep wriggle any sleeping toddler. I'd heard that Tempur products can be a bit hot and sweaty, which may be a good state to achieve in bed, but is less desirable when it's your bed doing it to you. Or maybe not, I s'pose it's all a matter of perspective. I wasn't too concerned about the hot, sweaty thing as I tend towards the ice cube end of the female spectrum. Confirmed by last night needing a hot water bottle to add to the warmth of a 15 tog duvet and a purry BendyCat. 


Ok, that's my Tempur love in done. I promise. They make you keep the box for the 2 month trial period but that can be chucked out as there's no way I'm ever letting this mattress out of my grubby paws. GangstaGuy pointed out there is a flaw in that logic as I have puny little sparrow hands** but you take the point. I love my Tempur. And I love you all very, very much for helping me buy it. 

Fortunately Tempur delivered my mattress well before I had to leave to go to Pain Clinic yesterday. The good news is I don't have to go back again. Woohoo! It's sort of implied in the name that it won't be the most cheerful of experiences but I seriously object to the pain of being fleeced of £2 for less than 30 minutes parking. I'd be far happier about it if the money went directly to the service I was going to use rather than being used to send endless stupid letters back and forth or employing more managers and somehow denoting them as front line workers.*** At least the nice clinic clerk went to get the parking thingummyjig from the machine for me as you can't pay either inside the building or at the exit forcing you to walk or wheel. Another stunning example of accessible design in our public sector. You'd think it might've occurred to someone somewhere that people going to a Pain Clinic might not be the sprightliest. But then that would involve actually putting some thought into these things beyond how much money can be made. Did I mention the good news is I don't have to go back again?! 


Dr Pain and I had a nice if slightly depressing chat about financial deficits, how far the new ConDem government will cut back on public services particularly the NHS and welfare and the implications of such cuts for services like the Pain Clinic. Dr Pain is a consultant of the old school, a nice man who is interested and interesting but the whole experience confirmed my feeling of the inadequacy of the current model being used for pain management. The role of medicine is important, a cornerstone of pain control and should be done by a doctor rather than a nurse, just as the exercise role should be undertaken only by qualified physiotherapists. But, they are not the people who should be delivering the management part of pain control. Physiotherapists and doctors are naturally going to think and act in a traditional medical model manner, which is all well and good for medicine but not so much use in helping people find ways to successfully live with their chronic pain conditions. Some Pain Clinics use expert patient schemes and most try to deliver some kind of pain management course but the lack of success of these is because they aren't being delivered by the very people who can understand and teach the necessary pain management skills themselves, people successfully living with chronic and painful conditions. With welfare reform being high on the list of the ConDem government's plans to savecut benefits, money will have to be spent on more innovative ways of helping those with chronic conditions into the workplace, and lack of appropriate pain management is a barrier to work for many. The future of successful pain management lies in Pain Clinics being able to directly employ such patients to deliver services to other patients. 'If life gives you lemons, then make lemonade' is a tough enough lesson to learn from someone in the same boat as yourself, but one guaranteed to patronise and push away if delivered by someone without direct experience of it. 

Whilst I'm on my soap box...the idea to scrap current job broker schemes is an excellent one, but could we do it properly and save some money by actually using the current single provider we already have. Y'know, those JobCentre things? I'm no economist, in fact my grammar school education has rendered me unable to add up further than the number of fingers and toes I possess, but I'm very, very certain that it will cost less and be more effective to put some money into Job Centres and tap into the skill of the advisors who were all doing the job of private job brokers far better until New Labour decided the whole thing should be taken away from the Job Centres and put into private companies. You may have that snippet of widsom for free Iain Duncan Smith, but please, please do me a favour and employ some actual currently unemployed people, particularly crippled and mental claimants to help you reform the system to one which will actually work and protect those in need of protection without driving us all off to Switzerland.


Dr Pain seemed sure that the withdrawal symptoms 'should have stopped' by now. He's a nice man so I didn't tell him that I've tried telling my body what it should and shouldn't be doing before now with very limited success. Ok, outright failure but limited success sounds so much more positive don't you think? What's that you say? Deluded. Yeah, maybe. I kept this stream of consciousness to myself during the appointment all the better to bore you with afterwards. Dr Pain suggested that I remain on a twice daily 10mg dose of Oxycontin as a 'holding dose'. I sort of mumbled non committally and went away fully intending to do no such thing. I haven't spent months going through this Oxycodone fuelled nightmare not to finish what I started. There is also the fact that on nothing more than sheer, gut instinct I feel Oxycontin is contributing to the problems I'm having at the moment. If at some point in the future, perhaps when the weather gets colder, I am unable to control my pain I'm happy to go back onto stronger forms of pain relief but I don't want to do that without being damn sure I haven't got another option. The Jobbing Doctor will perhaps be pleased to hear that I came away from the 'specialist' appointment with an increased confidence in my GP's ability to handle opiate withdrawal in a far superior manner than the Pain Clinic's. Now I need to somehow pass on that confidence to my lovely GP who is understandably inexperienced in the management of a complex Ehlers Danlos Syndrome and for it perhaps less sure of her own ability in this particular situation.

You'll have to excuse me now. I need to go and make love to my mattress. 






* Sorry Will, it's shit I know. I can hear you turning your, and my, future graves from here.
** I know. GangstaGuy is a man who comes up with the most creative of (un)complimentary descriptions.
*** I have no evidence for this, but I'm damn sure NHS trusts are busily involved in such activities already

Zip, zilch, zero

Despite spending the past three years railing at the inadequacies of the welfare state, now that we're in the run up to an election when it really matters I got nothing. Zip. Zilch. Zero. Just a big blank of swirling brain fog everytime I see a politician rambling on about welfare reform. Admittedly it's a less destructive cloud than the volcanic one, but only on a global scale. Inside my brain all flights are still grounded. 

I blame the Oxycontin withdrawal for this particularly virulent bout, but the brain fogged state is recognisable to anyone with disabilities or chronic illness.  Actually, sod that, as that is reasonable and Oxycontin withdrawal is not. I blame it for everything. Even the volcano. That's just because the withdrawal process is a bit like a volcano. All spurting fury mixed with teasing glimpses of blue sky. 

Fair enough, I expected the pooping and puking, the sweats and the shivers; I've seen Trainspotting. I even thought there might be some mood swings. I'm a girl, years of practice with hormones have prepared me for that. I expected it would be painful, but then I'm used to that. What I did not under any circumstances expect is that it would fuck with my sex drive so effectively. 


I'm sure there's a shiny scientific reason as to why opiate withdrawal affects sexual desire and function but sexual frustration means I'm too grumpy to google it. I saw the odd mention of it when I was searching for information about Oxycontin withdrawal, but as 99.9% of searches for information about opiate withdrawal are about addiction, usually helpfully provided by private clinics offering rehab services, it was hard to find any really useful information about the physical and psychological effects of withdrawal. 

So this is the bit you really need to know. Oxycontin withdrawal is an evil orgasm thief. Yes, that's right, withdrawal steals your orgasms. But just to fuck you up good and proper it whacks up your sex drive. Who knew there'd be such wonderful fringe benefits to crippledom.


It seems to start with a period of frantic, desperate wanking as the only way to deal with the ridiculous sex drive which arrives to taunt you a small dosage drop into the withdrawal process. The wanking is specific as trust me, no-one wants to shag a pooping puking mess, which is what you'll be at that stage of the process. Fortunately at that point you will see an happy ending  to all that wanking. Be sure to be damn grateful as later on all you'll get are sore fingers and numb bits. 


After the frantic wanking stage expect your sex drive to become dormant for a period of time, probably dependent on how quickly you're withdrawing. The other effects won't be that kind and will continue to plague you like the demonic little bastards they really are. Then, just when you think it couldn't get any worse your sex drive reappears with a vengeance, but no matter what you try orgasms are off the menu. 

I'm now down to 10mg of Oxycontin tds, from a starting point of 40mg tds. When I tried to withdraw rapidly I had to stop at this point. This time round I'm not stopping but it is noticeably more difficult than the previous few dosage reductions have been. I'm still eating gluten as I discovered it's a wonderful method of counteracting the poop/puke cycle, and in the absence of orgasms a girl needs all the donuts she can get.

"You're a nipple!"

Was announced down the phone with much giggling. Yep, you heard right, 'I'm a nipple'. In my part of the world nicknames are a sign of acceptance, the more bizarre the better. And I'm not even an actual proper Scouser, just a posh woolly back. So to be nicknamed a nipple is nicer than it sounds. There's a point to all this somewhere, honest there is...

Despite my protests to the contrary I gave Gangsta Guy another chance. And maybe a few more after that. He's grown on me, especially once I stopped my over privileged middle class princess panicking long enough to realise this man is no gangsta as gangsters don't tend to play golf unless they are the political kind of gangster. Actually, even if he was a proper real gangster I wouldn't care at this point, but he's not so happily that avoids an unnecessary moral dilemma. I like the name though, and he has agreed to it so Gangsta Guy it is. Not Really A Proper Gangsta Gangsta Guy really doesn't have the same ring to it.

Dr Heart is one of the nicest men I've ever met but appears to be completely devoid of any sense of humour so had to go. Giggles are infectious, giggles from a small, swaying stoner even more so. Don't laugh at that and you probably don't laugh at anything much. Certainly not at middle of the night puking, and then laughter is the only appropriate response. Preferably accompanied by a hand to hold back the hair. 3am vomit hair is grim.

I reduced the Oxycontin by another 10mg this week. I'm not sure where the week's gone, it all feels a bit blurry, though I definitely remember going to see LC. All was fine but I'm a bit gutted to be losing my local consultant rheumatologist at the same time as losing bendy clinic in Leeds. LC is retired and works as a locum now so is moving to another hospital. My local hospital will continue to take care of me, LC was adamant it is vital I remain under the care of a hospital large enough to have all the relevant specialities to refer to. I get the impression that despite all evidence to the contrary LC fears my aorta will just blow up one day. I suspect the wily old boy has been reading this blog too, so I'd better mention how much he will be missed. I've been transferred back to the care of the head rheumatologist who I've only met once not long after I was diagnosed. I'm pretty sure the head rheumy will transfer me to the care of the other rheumatologist so the next 12 months or so had better be healthy for me! There is always freak clinic to fall back on so I'm in a more fortunate position than most bendy people in the UK at the moment.

This was supposed to be a post about dating, so I'll save the dull medical details for another time and just tell you Gangsta Guy was horrified to discover I go to hospital appointments alone and wanted to drive me there. It's not so bad, I did catch a glimpse of 'likely to be my rheumatology consultant in a year or so' and he's very cute. Not so cute as to make him impossible to talk to as a doctor but cute enough to liven up 6 monthly clinic appointments. A girl's got to get her kicks somewhere!

Back to Gangsta Guy. He's surprisingly sweet, and even more surprisingly able to handle not just me but Bendycat. My neighbour spotted him on his knees in the frosty road trying to coax Bendycat out from the shelter of the car she was taunting him from and of course immediately informed me. As cats do Bendycat sauntered back in her own good time making sure Gangsta Guy knew full well who really wears the furry trousers in this flat.

Gangsta Guy was around to be taunted by Bendycat because he came to look after me. I was, um, somewhat not quite with it the other day, in that state where you find your own hands fascinating and no, it was not the weed. I took neighbour's advice and conceded to being looked after for once, so Gangsta Guy came over, tucked me up on the sofa and cooked dinner for me. He also washed up, stopped me falling over a few times and waited on me, thus totally forever destroying his Gangsta Guy image.

After which I was nicknamed nipple. By son of Gangsta Guy. Because I am such a nice cripple. Apparently. Gangsta's and cripples, an unlikely but impressive combination. I shall sell the theory to 'hug a hoody' Dave Cameron as the best way of reducing crime figures and slashing the social care budget. It's a policy with more merit than any of the politicians have come up with so far, and if Freud can get away with complete bullshit why can't I?

The first cut is the deepest

It was last year when it happened. I think so anyway. Could've been this year, Oxycontin withdrawal being great for rubbing away the already blurred edges of my short term memory. Thankfully my long term memory should kick in in six months or so and clarify the matter. Prior to that it'd probably be helpful if I remembered what I'm talking about long enough to tell you.

.....


........

...oh yeah. I remember now. The first cut is the deepest. Supposedly. It's not though, not really. The first cut might be the hurtiest, but not the deepest. Some wounds just never really heal, helped to stay painful by further cuts along the way.

My deepest cut is undoubtedly the long term effects of spending most of my life disbelieved. I have an honesty fetish. Gets me into trouble more often than not but it's the only way I found of dealing with the disbelief. Tell the truth about e v e r y t h i n g. Always. That way it's impossible to be the liar you're accused of being. Even if the truth wasn't the most appropriate thing to say at the time.

I've been better about this lately. Good friends in my life who find the idea of disbelieving me baffling. Or so I thought.

Ben wanted to talk to me earlier this week. We talk alot so nothing unusual in that. Except he wanted to tell me how disappointed he was in me. For the something that happened somewhere in the lost Oxycontin blur. When he was telling me I was so befuddled I couldn't work out what he was actually talking about. So, I apologised for having hurt his feelings a couple of time, made a vague comment about him not really recognising how difficult things are for me most of the time, to which he agreed, and left it at that.

It was only later when I remembered that I was hurt. Really, really wounded kind of hurt. Then angry. Initially not so much, now pretty damn pissed off actually.

See, Ben was upset because he believed I'd let him down, thought I just couldn't be arsed to do the favour he was asking. He can't see why it was such a big deal, after all, all he asked me to do was look up a phone number on the computer.

'It's something so small' he said. 'And you couldn't be arsed'

Which is why I'm so hurt. And so angry. Ben is a good friend, the kind of friend who's been there for me many times. The kind of friend who really would have every right to be pissed off with me if I really couldn't be arsed to do something he asked.

Except of course it wasn't that I couldn't be arsed. It was that I couldn't at all. The hurt and anger come from someone so close to me making the assumption that I couldn't be bothered not that I couldn't.

I did tell Ben that at the time he called. I was in bed. The computer switched off and in another room. I literally couldn't get out of bed I was so overwhelmed by pain and exhaustion. My body was set to reboot and just like windows until it was done installing updates it wasn't going to do anything else.

I remember now telling him a couple of times in that blurry conversation that 'I couldn't'. I remember how much he pushed me, how he said 'it was a nothing', that 'it would only take a moment' I remember being a bit cross with him for his insistence, but not having the energy or will to explain further.

Somehow in Ben's mind that all became 'you couldn't be arsed'. And that hurts. It opens up that original wound of disbelief all over again. A scab at which no-one has picked in quite some time. Niggled by someone who I expect to know better. Someone who's own wound needs stitching. But to sew that shut I have to cut deeper into my own.

Going gluten free

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


*currently on offer in Sainsburys for about £2.50

Pain Clinic

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!

Begging

Having been boring myself into apathy over the whole Oxycontin issue I'm pleased to say my appointment at the Pain Clinic has come through. Only another two weeks to wait, though beyond 'keep tapering off the dose very gradually' I'm not sure what they're going to say. Probably working out what I want to achieve would be a good idea before getting to the appointment.

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 bestonly hope for any crip in need of equipment

Withdrawl continues...

I went to see my GP this afternoon. I've still not heard anything from Choose and Book so it's likely to be a few more weeks before I even know when the pain clinic appointment is. Its important for my GP to know what the situation is, particularly as they do the repeat prescriptions, something that's probably difficult to do if you don't know what dosage of a drug your patient is taking!

My GP was running late, there were a few people in the waiting room but only one person was moaning about why the doctors were running so far behind when there wasn't a crowded waiting room. When asked my opinion I suggested that was typical for good doctors who spend the amount of time needed with their patients rather than sticking to whatever random number of minutes the latest government dictat has informed them patient care should last. I should've saved my breath as the woman immediately went back to saying it wasn't good enough, especially when not many people were waiting. What the two have to do with each other I don't know, but it took all I had not to start into a rant about people in the UK having no idea how lucky we are to have universal health care. In some countries people will walk for days and days just to see a doctor, whilst many in the UK can't manage a 10 minute wait in a warm waiting room without moaning.

When I saw my GP she was unimpressed to hear that I didn't yet have a date for the pain clinic. She told me to give it a couple more weeks and if it still hasn't come through then the practice will start chasing it up on my behalf. Last night I dropped the Oxycontin by a further 10mg meaning I'm now taking a 20mg dose three times a day. Even a drop of 10mg is noticeable so the plan is to continue for another two or three weeks at 20mg three times a day, then to drop the dose by another 10mg, initially just every other day to try and limit the more unpleasant withdrawl symptoms which seem to really kick in around that point.

I'm still eating wheat, a sign of just how miserable the withdrawl symptoms are. Usually eating even small amounts of wheat or gluten is akin to pouring concrete down my throat...which is why I decided to give it a try! It's not without it's problems or complicating factors but anything which limits the 5am poop or puke wake up call is a good thing. Especially if it involves pizza and biscuits!

2010 not 1910

As the snow slowly melts away, my sanity slips back into place. It's at best tenuous but it is at least a start. Yesterday I made it outside, only for a few minutes, and not without a few scary near misses but the beauty of the frozen beach soothed my soul. Today an hour with girlfriends was calming despite the caffeine and emotional angst of the topics of conversation.

When I saw LC just before Xmas I was not doing well physically. I'd managed to get the Oxycontin down to 10mg td* but it was at great cost to both me and my blood pressure, so I was instructed to increase the Oxycontin back up whilst waiting for an urgent referral to the pain management consultant. LC, being an experienced consultant, wise to the bureaucratically bound ways of the NHS, actually phoned the pain management consultant during the appointment and dictated the letter there and then as well as ensuring the dictation tape went to the right place. As he said, otherwise it could be weeks before the letter was even typed up.

Although politicians seem determined to ignore doctors and nurses, they do tend to know a thing or two about where the real problems lie within the NHS.

So, I duly increased the Oxycontin and hoped it would absorb. I also unearthed some very out of date Zofran in my medication box and took them for a few days. Fortunately they seemed to do the trick and gave me enough of a break from the vomiting to eat some Christmas dinner. Over the holiday period I increased the Oxycontin up to 20mg td, and although the withdrawal symptoms didn't go they slowed down to a point allowing me to gradually get more rest. The cold weather caused such a massive increase in pain that I increased the nighttime dosage by another 10mg to where it is now at 20mg, 20mg, 30mg. With all the disruption caused by the weather I knew the referral would be delayed so waited until this week to start chasing it up.

The pain clinic told me they had no trace of any referral. The very helpful secretary I managed to speak to in rheumatology, which is based at a different hospital site to the pain clinic, initially advised me that the referral was yet to be typed and would be at least another week until it was. A further phone call unearthed the referral, which had been typed and posted before the christmas break. Yet another phone call, equipped with this knowledge, finally managed to unearth the referral sitting on the consultant's desk, and that it'll be at least a week before it is looked at and the consultant decides whether or not he'll see me.**

Politicians are constantly harping on about the value of the NHS and how determined they are to dismantle it and sell the parts to their money grubbing matessave it. Literally billions of pounds have been thrown at the doomed NHS IT project. It's 2010. 2010, not 1910. This one referral has taken 3 weeks to be typed, posted, received, opened and delivered to the right desk in a different hospital which is part of the same overall trust. Billions of pounds on IT, yet no decent system of email. That's before the consultant makes a decision to see the patient, at which point the referral goes back into the system, gets (I assume) posted to the Choose and Book team, who will then contact the patient to make an appointment. All this is for a referral classed as urgent.

Aside from the billions wasted on not fit for purpose IT, there are huge knock on costs to the welfare state while patients waiting for the bureaucracy to follow them around the system are forced to take time off work and claim benefits.





*td-3 times a day
**This bit strikes fear into my heart due to all the problems I had prior to being diagnosed.
Again my words are hiding, until I close my eyes, lose myself in the music and suddenly they arrive, tumbling over each other in their frantic race to the page, hindered by bendily uncooperative cold fingers.

Achelois sees this as a bold thing to do, a brave unveiling of self. She might be right, she's a wise woman, but for me it comes from a weaker place. I write what I can't say. No matter how close the friend, how sympathetic the ear, something within me chokes every time. Yet here, protected by a screen difficult feelings are easy to articulate.

The weeping continues. It's becoming very annoying. And boring. All these weeks of early morning puking and pooping have exhausted me. Whilst my Oxycontin intake increased slightly after seeing the LC it's just slowed the withdrawal symptoms, not removed them. On top of bone deep pain and fatigue lies a weighty blanket of sadness. Fortunately there is still a part of me which knows, were it not for this withdrawal process, I would be upset but not so completely devastated by events the way I currently am.

There is no shortage of food in my flat, just a shortage of interest in eating it coupled with a lack of spoons to make it. That concern has been removed again today by my neighbour delivering a plate of roast dinner to my door. My prescription medication has been collected by Ben, who will also do any shopping I need, as will the neighbours. I'm just particularly bad at either asking for or accepting help. Unfortunately my very dedicated and hard working carer worked herself into exhaustion in the run up to Christmas and is still really poorly. Which is why I've insisted that I'm absolutely fine every time she's asked, as she is far too unwell to be looking after anyone but herself.

My words have gone again. So perhaps this is all I'm supposed to say for today. Apart from to thank you for all your comments and support, they always help.

Mistletoe and Whine

Oxycontin withdrawl continues and a fucking miserable state of affairs it really is. I'm not sure if Oxycontin has been a staunch ally in allowing me to totally delude myself about how much pain I'm really in, or if it's a sneaky conspirator helping to cause the pain. Guess I'll find that answer out when I've finished getting the damn stuff out of my system. Either way it's got to be done as a good 60% of the tablets are still passing through me without any sign of digestion.

That's what I keep telling myself at 5am when the puking or pooing wakes me up to a world of pain. The upside being that I'm a dead set to play E.T if Spielberg ever does a remake. It'd be the one time being a short arse gimp only able to sway from one foot to the other would be a selling point. I shan't hold my breath though, I don't think Steven's got my number.

So yeah. Lots of early morning unpleasantness. This whole thing would be alot easier if it'd let me get some decent kip. And if the police didn't insist on raiding so many previously reliable cannabis suppliers. That's just mean. I'd make a complaint but that'd take far too much effort so I'll just continue fantasising about pain control and the glory days of readily available, affordable weed for now.*

The pain relief will have to wait until Wednesday when I see the locum consultant. I'm hoping it's the same locum rheumatologist I've seen previously as he's excellent, but who knows. After all, why on earth would politicians want to put actual money into a specialty they can't spell and don't understand? Even if there's tons of people on sickness benefits because of things like lower back pain or fibromyalgia. Far more fun to trash talk the NHS and pretend it's fucked anyway, while crossing polyclinic builders palm's with silver.

Mood swings seem to be a particularly fun part of Oxycontin withdrawl. I'm either a grumpy, psycho bitch or a weeping wreck. Adverts seem to be particularly good at bringing out the weeping wreck, but anything'll suffice.

Hopefully it'll all be over soon enough. By the end of today I should be down to the 10mg dose, three times a day**. I hope it's not too difficult to make the jump from that point in 10mg increments because it's not possible to split the tablets in anyway without turning them into Hillbilly Heroin. Oxycontin still isn't used much in the UK, so doctors don't have much experience prescribing or withdrawing people from it. Anecdotally I've heard it's an absolute bitch of a drug to get out of your system, but at least Christmas will serve a valid purpose this year. I would like to be clean and clear of Oxycontin by the time the Best Man arrives to celebrate New Year....though he may not recognise me without my head down a toilet!




*It may or may not restore your faith in human nature to hear that dealers seem to have some sense of honour about people relying on cannabis for medical reasons. People have gone considerably out of their way not just to try and source some cannabis for me, but to source it a a reasonable price.
**Yes, Oxycontin is supposed to be taken twice a day for continual pain relief. That never worked for me so I've always taken it 3 times daily.

Hej!

While I'm lying on the sofa, whimpering pathetically and trying to find some food my stomach doesn't object to, it seems like a good time to update. After all, dry rice crispies are not very exciting even if I have left a Hansel and Gretel style trail of them around the Best Man's apartment.

So, I made it to see the Best Man. All the way to Sweden. The journey was relatively uneventful-well, by my standards. I spent almost all of last week resting and trying to get over the whole Oxycontin issue. I'd booked assistance before I left the UK, and it turned up when and where expected. The difference between the British and Scandinavian attitudes to disability is fascinating...even the train had a fully accessible carriage for disabled people, parents with young children and bicycles. The accessible toilet on the train so shocked me I nearly passed out!* It didn't smell and although there was graffitti it was muted. Once I'd arrived I realised what it was that seemed so different about the people...in addition to it being far more multi cultural than the part of the UK I come from, I didn't see any anti social behaviour the whole journey.

Aside from the better facilities there is one overwhelming difference between assistance in the UK and Scandinavia**, attitude. In the UK assistance is usually a bit of a drag. Manchester airport provides excellent disabled toilets and an assistance service to help people get around the airport. The people are perfectly nice but the concept that it's all a bit of a pain to arrange seeps through their very pores. You go where you're told, when and how, for the convenience of those providing the assistance rather than the other way around. So far, what I've seen of Germany and Scandinavia it's the oppposite. People can't do enough to help! Whilst people often offer me help in the UK, this was very different. Those employed to provide assistance have a positive attitude to their roles, probably helped by vastly better equipped and provided facilities than in the UK.

Once I'd realised I was on the wrong train and needed to change, it nearly came to blows so many people were determined to help me out. He'll never see this, but I'd like to tell the kind and patient Iranian gentleman with the prayer beads, who happened to be sat opposite me on the train just how much I appreciated his actions. His face visibly changed when I told him I was British, but he still went out of his way to push me and my case around Malmo station to help me find the correct assistance.

So, the reason I ended up lost in Malmo was because the assistance guy put me on the wrong train at Copenhagen airport. I suspected as much, but thanks to the helpful bi-lingual announcements worked it out before it became a problem and had plenty of time just to get on the train I should've been on initially. Unlike Vodafone UK who insisted they'd enabled my mobile to work in Scandinavia before I left the UK...and who of course hadn't. Which is how I ended up on the wrong train, completely unable to communicate with the Best Man to let him know what was going on. Fortunately once I was on the right train a nice British man lent me his mobile to send a text with arrival times as both the Best Man and Oldest Friend were getting concerned about where I could be.

Despite the week I've just spent doing the better part of nothing and trying to recover...I've tipped back into withdrawl. Hence the rice crispy trail. Again, the Oxycontin is just going straight through me without digesting. Something I would've preferred to know about before vomiting all over the toilet, floor and myself shortly after arriving in the Best Man's apartment. I'm beginning to fear it really is a sex curse. Puking and sex don't go together too well at the best of times, and I really, really don't want it to end up four times in a row!

*though not before getting Bog off photos!
**Germany had a similar attitude to the Scandinavians

Change of plan

So what can I say...I'm naive! I went back to my GP this morning to be reviewed and to have my bloods taken. Ben had said he knew I wasn't right as I kept curling up in a ball, whimpering that I wanted to die. Although it was the admission I'd spewed on the bathroom floor and just left it there plus the total lack of my OCD need to clean up the flat and insistence that Bendycat could go fuck herself which really did it. Poor Bendycat, I love her really.

So, the New GP took one look at me and said things weren't working out and she wasn't happy for it to continue. To be fair the nice man in the newsagent had said that 5 minutes before but he's not medically qualified. The fact that I was sitting in the GP's reception hugging a sick bowl and shaking might've had something to do with it too.

Although I'd not had any Oxycontin I was having to take Oramorph, co-codamol and some dihydrocodeine Ben found in his bag. New GP explained it's pointless trying to do this as although I can cope with the withdrawal symptoms I clearly can't cope with the pain. I deferred to her far more sensible opinion. I was in no fit state to have blood drawn so that can safely wait until after my visit to The Best Man.

So, the new plan is that I'm to go back on the Oxycontin, 40mg three times a day. Leave it for 5 days or so then gradually taper down the Oxycontin over a period of time. I feel both disappointed and relieved. The withdrawal symptoms are a bit like a nasty flu, the proper kind where you can barely get out of bed. However, they are not too difficult to tolerate because I knew they would end within days. The pain is something else altogether. I'm still not sure how much of the unbearable pain was withdrawal and how much EDS, but it'll probably be easier to get that picture when I taper things off more slowly. I suspect it's more the EDS as once I'd been dosed up with the codeine/oramorph combo and it had had a couple of hours to start to work properly I felt much better, well enough to have something to eat and keep it down.

Although it's been horrible, I'm glad my body has had that break from the Oxycontin and hopeful that slowly reducing the dose will be easier to manage. Mostly what I kept thinking whilst shaking, sweating and rattling was how much strength it really takes for addicts to get themselves off heroin. It was easy for me not to take the tablets because I don't have any of the psychological components of addiction, but even I was fantasising about a nice general anaesthetic and only having to wake up once it was all over. Certainly addiction is a massive problem for society as a whole and particularly the welfare state but until we address the reasons people become addicts and stop blaming addicts themselves nothing will change.

The first 24 hours...

Oh god I want to die! Actually I don't, I just want the pain to stop dammit! So far things are going better than I'd anticipated. Ben stayed on the sofa last night so that there was someone here if I needed help or just someone to witter at while I was rattling. He'd stocked up on Immodium as I'd expected to have horrific diarrhea plus brought fizzy drinks and ice lollies.

So, yesterday afternoon/evening I had alot of shakes, sweats and shivers. I took my last dose of Oxycontin at 6am Nov 16th so it's been 26 hours now, and of course no guarantee that last dose was even digested. I suspect not properly as the withdrawl symptoms were much more severe yesterday afternoon/evening than throughout the night.

By midnight ish I'd had a couple of doses of diazepam (correctly spaced out), doses of basic co-codamol (for the overseas amongst you that's 8mg of codeine with 500mg of paracetamol) and doses of Oramorph. Plus a shit load of skunk.

I still hurt. Alot. I couldn't tell last night, and still can't really if the extreme muscular type pain I'm experiencing is because of the EDS or part of the withdrawl. That's one of the reasons I want to not take Oxycontin at the moment, it means I can't really tell whether the drug is causing the pain or the EDS. Whatever it is I can't function like this and will be begging new GP for some alternative pain relief. I feel like only someone rubbing their fists, very firmly into my back would reduce the pain. Sadly there are no suitable fists in range.

Probably the most significant problem has been the thirst. I'm not sure if it's just from the sweating, or something more specific but constant thirst has been a feature of this. I keep finding myself sort of smacking my tongue repeatedly, in a similar fashion to a baby suckling. All a bit odd! Usually I can't stand fizzy drinks, I only want them when I feel sick, but now I can't get enough sweet liquids. Proper food was out of the question last night but I got into the sugar about midnight.

I did get a reasonable amount of rest between about 2am and 7am. Whilst not proper sleep I was able to doze reasonably comfortably for a while. Pain woke me up and since then I've been ridiculously thirsty, thrown up...not just on the bathroom floor and had some relatively very mild diarrhea.

The sweats are really starting up again now, although I think these are more caused by pain and lack of calories. At no point have I been frightened for my physical or mental health though I have been a bit puddled at times. It's funny...the Oxycontin tablets I should have taken at 2pm yesterday are sitting on my bedside table, there is more oxycontin in the drawer and wardrobe. But, at no point have I wanted to take it. I was considering taking 10mg last night when rest was eluding me but decided it would only make things more difficult in the long run.

Now I'm giving myself stern talkings to about it only being a couple of hours until I can get some more appropriate pain relief. I am well overdue a dose of Oramorph but fear it'll just make me vomit again at this time of day, so that probably won't prove a practical longer term option.

However, overall, so far so good. No major problems or complications but my heart goes out to those trying to do this with a psychological addiction in addition to a physical dependancy. It may be very naive of me, but I'm hoping the worst is over.
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