Tag Archives: chronic pain and depression

Diary of a Benefit Scrounger: Don’t Worry Your Pretty Little Head

I am among those yellling “This!”

The only other reason I’m here is for adequate pain relief, which I could also do myself at home, but because doctors don’t believe high level, acute opiate use can ever be anything but deviance, it must be overseen 24 hourly by professionals. The only way to guarantee that the pain is controlled once it reaches a certain point, is to stay in hospital. The exhausting misery of not-being-believed as you run the gauntlet of large repeat opiate prescriptions is just too traumatic. There are just so many stages of people not to believe you. Receptionists, pharmacists, Drs, locums, out of hours doctors….I promise you, several thousand chronically ill people are reading this and screaming “THIS!! SO THIS!!”

via Diary of a Benefit Scrounger: Don’t Worry Your Pretty Little Head.

My experience in hospital last June

It has taken me a while to get around to writing this. To start with, I liked many of the nurses and Health Care Assistants (HCAs) on the ward, they were understaffed and trying to manage 16 barely mobile post-op orthopaedic patients. I liked my surgeon and his team. They did a good job on my back and the sciatica has all gone (though I was warned that it could come back if the L4/L5 disc gets worse again). But the ward team fucked up badly at the start and I was put through avoidable extra pain because of it.  So, to begin the story:

In early-mid June 2012 I was admitted to hospital for spinal surgery (microdiscectomy at L4/L5 & bone fusion at L5/S1) to try to solve my long-term severe bilateral sciatica from two ruptured discs. I also suffer from Fibromyalgia (along with other health problems) and am on a regular medication regimen that I & my GP have worked out over the years. It works for me and stops me lying in bed, sobbing in pain, for most of each day.

The first indication of a problem was when I arrived and they had the wrong name for me on the whiteboard – I have two “middle” names, they had picked the second of my middle names and my surname. Then they discovered that the various folders for me also all had different names. Each of three folders (all necessary, apparently) had a different “first” name selected from my full name. It is a good thing that though my surname is not unusual, none of my given names have been common for the last few generations.

The next issue did not become apparent until later but started at this point… My husband had created and printed out 4 (four) copies of a timetable for my medication needs (I take something every two hours from 7am until 11pm – missing a single dose will cause my pain levels to increase, missing more feels like an exponential increase in pain & fatigue levels). I also had a carrier bag with a week’s worth of medication in it (a two-week supply fills about 1/3 of a large airline cabin bag). I handed these to the HCA who was checking me in and was pretty much ignored while I was trying to explain about the timetables and my medication.

I went into theatre at around 9am & had a 5-6 hour operation during which I was positioned on my front, with thighs raised on pillows so that they and my shoulders took my entire weight (to keep my abdomen from putting upward pressure on my spine). In recovery, I spoke to someone and said I needed my regular medication (and told them what I was due to have then) so that I could manage the pain properly. I was given a single capsule of one of the three medications that I was due at that time of the day and told I could have the rest when I went back to the ward where my medications were.

But I got no further medication when I got to the ward. Despite repeatedly asking for it and telling them they had my timetable the response was continually parroted “you were only written up for one X and you’ve had that. You can’t have any more until the doctor says you can! ” Added to “we only dispense every 4 hours” and “a doctor will see you tomorrow to determine your needs”. Oh, and they had no knowledge of my timetables. I cried and moaned constantly with pain and was told to “calm down”. I begged for painkillers. I was refused. At this point I was not only in pain from the surgery site, but the Fibromyalgia had gone into full-on flare-up mode with the added bonus of a migraine AND my thighs, which had been “dead” & numb from the pressure of my weight on them for so long, started to get seriously painful pins and needles (sounds trivial, but it felt like my skin was both being flayed and burned off from the inside, that particular pain continued for over a month). By this time it was around 2am, I think, and I could no longer handle the pain in any way, shape or form so started screaming uncontrollably. I was pretty incoherent by this point. The nursing assistant’s “calm down”s started to be appended with “the anaesthetist is coming”.

Shortly afterwards a doctor (the anaesthetist) was brought to me to have a “chat” – she gave me morphine. As the morphine knocked the pain down a notch or two I was able to point out that my GP had already “written me up” for the essential medications to manage my conditions, that being what a prescription was for, but that I could not possibly manage them if the hospital was so idiotic as to ignore that. I also pointed out that MY regimen was 2 hourly, not 4, and the hospital insisting on 4 would mean that I would be in severe pain for the latter two hours of each period. At this point they “found” the timetables we had provided (one was even in the locked cupboard by my bed with my medication). I showed her the app on my phone that tracks my medication, sets off an alarm and reminds me what to take at the appropriate times. I explained again that I have been managing my condition this way for a few years now.  She thought about it and asked if I would be able to cope better if I had “control” of my medications.  Oh, hells, YES!  Finally a note was written for the nurses that “the patient will manage her own medications & notify a nurse what she is to take & when. ” I was also put on a self-administering morphine pump (badly inserted catheter meant a moderate level of pain started to build in that arm if I didn’t keep my  forearm raised vertically & eventually the fluid was leaking into flesh & causing swelling so it was removed after 2-3 days) & regularly offered oramorph during the night when I could not sleep (night-time being a period when I do not schedule medications for myself as I expect to be lying down and doing nothing to increase pain levels) – I had to stop using oramorph after a couple of days as it was clear they were triggering migraines. My husband bought in my refillable icepack & Imigran as the hospital had nothing suitable.

I have to say that once I was given control over my medications again, things improved rapidly. But taking note of a pre-existing illness, especially FMS that has such a huge effect on how your body handles additional trauma and pain, should be a vital part of post-op nursing care. Refusing to provide a patient with their prescribed medication because they didn’t bother to check it or to pass the timetable to someone with the authority to re-approve its use within the sovereign grounds of the hospital is simply inexcusable. If a patient has to start screaming with pain to get it taken seriously they have failed in their jobs.

I have been suffering severe & chronic depression that has worsened since the surgery & the physical recovery is still ongoing. I should probably have registered a formal complaint at the time but I was just glad to get out (and then spent several weeks with even more limited mobility than usual and lots of pain that sort of knock such ideas out of your head). My surgeon and his team were, for the most part, excellent – I can’t fault them for something that the nursing staff should have been dealing with.

“But if you can sit at a computer to type, you can do a job!”

“If you can sit at a computer to play a game or read/respond to an article, you can do a job!” I want to be paid for the number of times I hear that or some variation on it – more if it is from someone who I believe “should know better”.

Who will employ someone who not only cannot do a full day, who would be too tired to actually do anything after commuting to work, but also cannot guarantee which days (if any) they could work? Who will employ someone who might get to work only to collapse & need to be sent/taken home? Who will employ someone who might suddenly have a “brain full of cotton wool” and be unable to remember things even from only a few minutes previously? Who will employ someone who might manage two days one week and none the next? Who will provide a private office with a sofa or bed for their employee to take the necessary naps to get them through the day? Who will employ someone who is taking Tramadol or morphine every couple of hours for the pain? Pretty sure that last, and possibly some of the others, would contravene workplace safety laws.

Imagine having flu, not a bit of a sniffly cold, FLU. Deep bone aches, joints stiffen, everything hurts, brain is fogged, body shakes, exhaustion not helped by sleep, constant headache. Now imagine living with that ALL THE TIME. With no real help from medication other than to “take the edge off”.

None of these not-yet-disabled that I see every day on twitter, on various comments sections to blogs or newspaper articles making nasty comments about others. They must be absolute medical geniuses to be able to diagnose from a newspaper or blog comment whether someone is fit for work. They should be working for ATOS.

Perhaps they should remember that it only takes a split second for their life to change. Most people who are disabled or chronically sick were not born that way. We had lives. We had careers. Then something happened and we were suddenly useless. Unable to do the work we trained for. Some of us successfully retrain, become self-employed, but it’s difficult and requires a lot of support… financial support to allow us to adapt our way of doing things, to get going as a start-up. Then sometimes Our condition worsens and that gets ripped away from us as well and we’re back to square one. All the time being judged by people who simply haven’t got a clue and, truth be told, haven’t even stopped to think about what they are saying or writing beyond regurgitating what they last read from their favourite comic tabloid.

“Those Paralympians are disabled and they can work!” “What about Stephen Hawking? He’s able to do amazing things.” These comments piss me off beyond belief.

You can run like Usain Bolt? No? Oh, perhaps you are a Nobel prize candidate in a scientific field? Still no? Maybe you are an award-winning author or composer? A celebrated artist? No? Why not? Other non-disabled people do these things. Why can’t you?

That’s precisely what those unthinking idiots are saying to anyone with a disability.

And when they start using terms like “drain on resources”? Oh dear, now we’re one step away from calling disabled people “useless eaters” or “useless consumers”. Perhaps all people who have an accident or fall ill should be given a “Deliverance Machine” with a list of “correct” answers in case your idea of society deems them to be too much of a burden.

I used to say that I would never wish my combination of illnesses & medical conditions on anyone. I changed my mind and the list grows longer. I’d like to put an ever larger number of people into modified “arthritis suits” for a few weeks to see how they manage a life of constant pain & restriction.  It’s not cruel and unusual… that would be if I suggested they have a hip & knee replacement, a few rounds of ECT, a go on an acceleration high G simulator and then be put in the suits.  But I shall, womanfully, restrain my natural aggressive tendencies.

Back to Work Schemes & Myths About Disabled People

I wrote this in response to someone on a comment thread who said this about disabled people being forced onto the government’s Back To Work schemes:

Most though have not paid any NI or tax such as this Girl

The “Girl” he refers to is Cait Reilly who recently succeeded at the Court of Appeal in claiming that forcing her to work for “free” at Poundland was not legal.

This is my reply:

( I will assume by “tax” that you mean “income tax”, as everyone who pays for anything in this country is paying tax on every single transaction beyond the basic foodstuffs.)

You assume that she hasn’t ever had a job? Most youngsters that I know at uni have part-time/casual jobs. They have to or they can’t survive (unless they come from rich families). The so called “maintenance loan” doesn’t even cover basic housing expenses, let alone the cost of food, transport & most importantly, textbooks etc. Chances are many young graduates (again, unless from well off families) have been paying income tax & NI since they first left secondary school.

The girl was already working for nothing, in an area where she would learn more of use, benefit her CV and give her a better chance of finding a job. But that’s not good enough for this government who want to supply free labour to business & so force down wages even further for their big business backers & puppetmasters.

You’ve also assumed that anyone who is disabled or chronically & permanently ill has been so from birth. That they never had a time when they were able-bodied or well enough to work. Never a time when they were “just the same” as everyone else. People seem to do this a lot, assume that someone with a disability or illness, who has to claim benefits in order to survive, has always been unemployable. Is it perhaps because recognising otherwise might make people realise that it could happen to them at any second? That it takes only one split second of inattention to lead to a disabling accident? That they could have just that one “perfectly standard” test at the doctor’s that comes back to tell them that they have an incurable, disabling illness that will only get worse over time?

And even if they manage to survive all of those… they’ll be old & infirm one day. They’ll wonder then why there’s no-one to speak up for them & their needs.

We’ll call them the Temporarily Able-Bodied or The Not Yet Disabled.

Not Letting the Depression Win

Some of my friends are at P-Con in Dublin this weekend.  A big part of me wishes I was there.  But a few months back, when we were discussing going, I bowed to my “Oh dear gods no! I can’t deal with people in a social setting!” panic and said “I don’t think so.”  I also gave in to the fear that the trip would exacerbate my already painful sciatica and let that tip the balance on the decision.  I wish I hadn’t … now.

I know this happens.  I know that I do this.  It happens with some regularity.  To the point that I haven’t seen most of my friends in over a year, some a lot longer.  But I’ll do it again.  I know I will.  There’s an event coming up that I should be looking forward to.  An event that I have been involved in as an attendee or committee member for 16 years.  Many of my friends will be there, many of the rest of the attendees are people I have met before.  But the screaming panic wells up anyway.  When it isn’t the screaming panic, that’s just because the depression has stepped up a notch and turned it into apathy.

Kayla's Tudor Dress

Discworld Convention 2010 Gala Dinner Dress

This year feels worse. This close to the event I would normally be knee-deep in satin and lace and various trimmings, making some “simply fabulous” creation to wear to the Gala Dinner (it usually takes me a good 6-12 months to make something because I can only manage about half an hour or so per day, if that, working on it).  This year?  This year I am not even sure I can summon the enthusiasm for the Dinner.

We do this.  Us with chronic pain and depression.  We know we do it.  We hate ourselves for giving in to the depression when it strikes.  But when the depression flows, we have no sense of perspective.  Everything is wrong, nothing is worth doing, life is shit and we might as well crawl under the covers and stay there.  It’s got to be hell for those who care about us because there’s nothing they can do to make it better.  It’s coming from inside.  Whether it’s related to whatever is causing us the physical pain/disability or is a separate condition entirely doesn’t matter.  It is not external, so there is no external solution (except drugs).

The first step to managing depression is recognising when it is affecting us.  Recognising that some, if not all, of the negativity that seems to have dropped on us out of the blue is not entirely warranted.  That we may be seeing things through a distorted lens and need some help to clear the focus.  Once we know what we are dealing with, we can get the help we need.  And that help may vary from person to person.  What works for me may not be what will help you and vice versa.  The important thing is to find that ladder to allow us to climb out of the holes we fall into – and once we’ve found it, keep it handy for next time.