Sunday 16 June 2013

And the Drugs don't work, they just make things worse....

*Before I write another word, please be totally aware that I DON'T advocate this for everyone*

Last year was without any doubt the worst year of my life. And believe me, it has some stiff competition.

I tried to go back last night and find a starting point for the awfulness, but horizon-like, it always shifted every time I got close to it.

I had two major operations. One went wrong and led to a battle so dreadful, I thought scriptwriters must be writing my script, Truman Show like. I faced the full force of a hospital scorned.

I had to fight the rejection of my DLA application, right to the brink of tribunal.

I was evicted and had to move.

I had to find an entire new medical team, from scratch on my own, before I croaked.

I fought an entire government who played DIRTY, with reckless and passionate conviction.

I was desperately sick all the time, there were no post-op reprieves or mystery mini-remissions.

My Dad died, who I adored. There were funerals to arrange and long estranged siblings to find a compassionate voice for.

But the very worst thing of all, the thing that made it impossible for me to live, to love, to fight, was medicine.

Over a very long period of time, a chronic illness teaches you sooooo many lessons. You absolutely don't want to learn any of them by the way, so hold the "brave" or "remarkable" loveliness. You aren't given a choice in the daily dose of pain prescribed - medical or social.

At some point, you learn that each and every drug you are given are just flimsy shields against impotence.

Imagine any drug on a set of old fashioned sweet shop scales. On the other side, balancing perfectly, are the side effects that drug will give you. The stronger it is, the heavier the weight must be on the other side.

My crohn's meds increase in strength (and so side effects) from almost-as-healthy-as-cammomile-tea to at-least-it-won't-kill-you-sooner-than-the-crohn's (probably) So do all painkillers, anti-emetics, dietary interventions and treatments.

I'm sort of beyond any of those helping me, so until recently, accepted a world of side effects in exchange for.... well, none of them helped so actually, in exchange for nothing.

One has such a high risk of causing leukaemia, you had to have weekly blood tests. One triggers TB. One is (in drug licencing terms) scarily likely to give you brain tumours. One of the feeds has a 1% per year chance of killing you - cumulatively. Surgery has a 20% risk of killing you (I've had 9, you do the maths.)

But pain meds!!! They're EVIL.

We have to take drugs regularly that are addictive and mind altering, but never become addicted and somehow, remain unaltered.

We must manage like tightrope walkers, focussed and brave.

We must not allow addiction to things that are addictive. We must  only succumb when the pain is at home dental extraction levels. Which means "first stages of labour" and "rugby dislocation" levels must be born knowing there is something in the house that could make it better. But that's not what they're for.

Think about this for a minute. We only have 1) Man made heroin  2) Man made cocaine 3) Uppers 4) Downers 5) Weed 6) Booze available to get any relief from grinding, desperate, unremitting, intolerble pain. Once you're done with paracetamol and Nurofen, that's it, you're done with Mr Nice (**oblique vox-pop reference)

From there up you have 1) Addictive 2) Addictive and damaging 3) Addictive, damaging, and eternal space cadet. 4) Might get you arrested

I was at the "Might not kill you before crohn's does. eternal space cadet" end of the spectrum.

There are lines, boundaries, constant rules. You live by them, every last neuron is consumed with obsessing over them. There's no space for play dates or seeing friends.

Minute by minute, day after day after day the only question is "Is this enough pain?"

Only when tears trickle involuntarily down my cheeks is it usually "enough".

So then, there's the last stage. The place I found myself lately.

"Give up, take the big pill sitting there now, weighing everything else in your life down."

But for less pain I was suddenly faced with "Exchange your children and your husband and your writing and your friends and your fitness and your dazzle and shine"

And the scales tipped so hard on the side of life, I had to choose that.

So far though, I haven't learnt how you live with the pain, in sharp focus, every day, and always have the strength to face it down.

When I have, I'll let you know.


  1. All my empathy, my love. For me, it's functionability: my choices for medications are "Be painfree, be able to function, think and work: pick one." I've chosen the latter and there are times I hurt too badly and just say FUQ IT, take the drugs and space out for two days, or three. But eventually through the fog I realise I have to get back to being able to function, being able to draw and paint and write and think and laugh and cook and simply BE. And it isn't fair we have those either/or choices. It isn't fair at all that pharma companies are more interested in profit than actually finding relief and making progress. It isn't fair Docs tend to just wring their hands and sigh rather than getting involved enough to do more research and put up more pressure to help the patients who have reached the wall of What We Know About Illness X.

    I wish there was a solution for you which didn't involve agony. I will hope there is somewhere, and that you will find it. Until then, if you ever need me to tell you a story, you know where to find me.

  2. This should publish as my WordPress account, but it's showing as Anonymous. I do nothing anonymously online.

    Ron Graves.

    As I wrote a couple of years ago, take away even a small portion of my potential 21-drug side effects, and the condition diagnosed as ME ceases to exist. And when I was in hospital recently, they found several of them were actively poisoning me (mainly because I'd lost so much weight and was effectively o-d-ing), so I know exactly where you're coming from there.

    Pain meds, though - effective ones anyway - have always proven elusive, as GPs have an enthusiastic and misplaced faith in Paracetamol.

    I need pain mends, by the way, because I was truck by lighting in 1983. This literally fried my feet, and damaged almost all my joints, which are now riddled with osteoarthritis, from toes to neck, plus a whole raft of CNS damage.

    So, naturally enough, I'm in severe pain, but not until I was in hospital - one of the few things they didn't screw up - did I manage to pry loose some effective medication, in the form of Tramadol, 100mg plus 2 Paracetamol every 6 hours, which shuts down most of my pain as if a switch has been thrown.

    Unfortunately, it also shuts down that part of my brain involved with writing, and as my brain is the only part of me that works properly these days, as you can imagine, I wasn't thrilled.

    Mercifully, I'm coming back from that, but it has also affected my speech, to the extent that I thought I'd suffered a minor stroke (I've a history of TIAs).

    There's a downside - isn't there always? - in that I've developed Lymphoedema, which has become infected, causing Lymphorrhoea (the pressure of fluid in my legs is so high it simply forces its way out through the skin ). The combined pain is monstrous at times, and Tramadol has no effect. The District Nurses, who are here every day, recommended Oramorph, my GP recommended sodding off!

    The pain - and the itching, which is worse - ensures that if I get 2 or 3 hours sleep a week I'm doing well - I'm also coming apart at the seams from sleep deprivation, and frequently, at night, find myself contemplating suicide.

    Frankly, it's a solution that's looking increasingly attractive, and the only thing that's holding me back is that it would distress so many people. But, apparently, I'm probably dying, according to my consultant, so maybe that's a decision I won't have to worry about. I won't be sorry to go.

    Not on a par with the horror of your year, Sue, but still not fun, and I sincerely hope things get better for you, and soon.

  3. I'm lately hearing acupunture's good for pain.

    1. It is, (for me). Some bits it didn't touch; but I would say it helped. Here we get x6 treatments then you have to go back to your GP and ask for more. Currently have a three month waiting list. It didn't replace any of my pain meds (morphs trannys etc etc) but it was good & would recommend it to anyone. :)

    2. acupuncture isn't however for everyone, it gave me a massive cyst and triggered an auto-immune flare for me. Unfun :(

  4. *Squishes*

    I often think that some doctors are so concerned about addiction they refuse to weigh up the risks of that against the benefits of taking stronger meds. I used to only take my painkillers when it was at saw-my-own-leg-off level. Then I discovered that if I take them before it gets that bad they work better, and I can even reduce them when I improve a bit.

    Every person needs to figure out what the best solution is for them, out of a load of bad solutions. For me, being in extreme pain means I function worse than when I've taken tramadol, so it's pretty easy (even though it makes me feel foggy and out of it). I know I'm lucky that tramadol works for me as well as it does (even though I'm still nowhere near pain free, it's bearable).

    I know that having lorazepam would improve my quality of life loads by reducing my anxiety and increasing my ability to cope with sensory input. Thanks to being sensitive to medication, I only need a tiny dose (0.5-1mg every three days) to get the benefit. As it's a benzo though doctors are far more worried about the potential for addiction than the effects of being without for me (I believe that the daily panic attacks for years on end are what damaged my immune system so I couldn't fight the flu and ended up with M.E). I'm going to try asking my new GP for some but I don't hold out much hope, even though I've never become addicted to them before.

    I hope you figure something out. I find heat helps a bit. Microwaveable penguins for the win!

  5. Oh Ron, that's a heartbreaking comment.

    I think you really need to see a GOOD pin specialist and possibly think about changing GP. I did both despite being utterly terrified of both and it worked out. Now got a great GP and a lovely pain doc.

    I know it's hard to keep on striving, but please seek out some better help than you're getting.

  6. I am very lucky, i don't have experience of medication drugs, apart from phenobarbital for my fits as a child, but my wife takes Tegretol(carbamazepine)daily for her epilepsy and she regularly falls asleep watching telly, usually at the end of a movie and i have to explain what happened, lol. Or she dozes off on the bus home from work, missing her stop and arriving home an hour later after getting bus back from where she awoke, ha ha! I took a couple of her tablets once, to see if they affected me and i couldn't keep my eyes open after half an hour. I cannot imagine the feeling of having to choose between pain or drugs to get through a day. I never fail to be emotionally moved and be regularly inspired by what i read on this site. If only there was a way to bottle Sue's inspiration, (Marsh's Tonic!), there would be no suffering left in the world!

  7. I'm so sorry you've been in this position. You have my deepest sympathy.
    I was also thinking this morning about meds and the tightrope we need to walk between side effects, potentially fatal and the effects of pain itself. I was diagnosed a few weeks ago with a condition that is likely only to get slowly worse and while the current levels of pain are manageable, I'm not hopeful of improvement. The mass of information out there is actually a hindrance as I end up cross referencing drugs & effects and other factors and becoming (because of brain fogging) more confused and more unsure of what I can actually do.
    The saddest thing was that when I finally went to my GP (we'd moved areas) his reaction to all the symptoms was to glance at my history, clock the depression record and say, "oh it's just all from depression." Turns out he was totally wrong and this attitude might well have been at the core of why it's taken so long to spot there's something physically amiss. I was very angry at the time and am considering complaining if I can find the energy.
    I wish you all the very best.

  8. My experience of any and all meds is that they mask the problem and /pain. They're plaster to a wound thats not shrinking, so you need a bigger plaster/more meds but the root problem just continues to get worse.

    This is true of both mental and physical problems (not in all cases but it a good deal of them).

    I am talking from both personal experience and what I've seen in my own family many of whom have lost their lives despite the meds.

    It's rather poignant then that I should be writing this on fathers day when my father lost his fight for life at the age of 48 to secondary cancer. No amount of chemo, radiotherapy or steroids could save him.

    I decided to take ownership and control of my own health problems. I came off the meds, changed my diet and sought practical treatment.

    After years of meds getting nowhere I'm finally making progress.

    I went vegan four years ago, lost four stone in weight and sought treatment for both my mobility issues and also my mental health needs.

    I don't doubt that the mask of meds would have given me dulled and half life never progressing to a meaningful life, but never feeling alive again, but I'm willing to take the bumpy road, sweat out the painful times and get a long term health transformation instead.


    1. I'm vegan. I've been vegan for over 20 years, for the sake of the animals. It has improved my state of mind and I'm physically well enough to be a blood donor and to work out a bit.

      But it isn't a cure-all. I'm so glad that it's worked out so well for you, Verity. I would encourage anyone who wanted to go vegan to do so when they were ready. But it isn't always going to solve a person's health problems.

  9. Whenever someone says to me "Oh, I only take pain meds when I _really_ need them." I have this intense urge to punch and kick them until they are at the level of pain that I am at daily *even*with*the*drugs*I*take*. I know what happens if I stop taking my meds or reduce the dose too much. I become totally incapable of unassisted movement and simply lie in bed sobbing with pain. Too much pain to even sleep.

    So, I take medication that over the last 15 years I have experimented with until I found what works for me - and that is to take half the maximum dose of a mix of analgaesics every two hours instead of the max dose every 4 hours. It doesn't totally remove the pain but it levels out that pain spike that happens when you take them the way the doctors think you should. I'm lucky to have a good surgery and am dreading when I move and have to train a new GP to actually listen to ME and what I know works for ME. I may become dependent on one or two of them but, you know what? I really couldn't give a toss what the attitude we seem to be importing from America is towards narcotic painkillers - oh, ones! Scary scary codeine/tramadol/stuff that works. Of course I am dependent on the drugs I take. Without them I am helpless and in agony.

    I really really appreciate your very first sentence in this post, so please don't take my reply as an attack on you - it's an attack on the arrogant knowitalls I sometimes meet who do this to me (including my mother and mother-in-law - and my sisters and sister-in-law - the women in my family are a pain all by themselves).

  10. Esther McVey Government treating disabled people generously, BULLSH*T or brainwashed ? Video…

    can someone here view this video and tell me what she's on about

    1. Hey Nick, i think she said something that can be loosely translated as complete self-praising brainwashed government Bullsh*t! Krisnan Guru-Murthy was great interviewing her, she was hanging on for dear life at the end, lol.

    2. Hold a Public Enquiry into deaths after Atos medicals.

    3. I just signed the petition Nick mate. Whether Iain Dopey-Sloth actually cares enough to appreciate the severity of the problem remains to be seen, but obviously the more pressure he gets put under the better.

    4. thanks martin
      I'm not allowed to sign any partitions as the DWP banned me from that part of the internet. I'm only allowed to do one hour max a day and they monitor what i do so i just stick to the guidelines for a quite life

    5. How can the DWP legislate what you sign, or when and for how long you do it? That is complete rubbish! This is worthy of another petition, 'Let Nick Sign Petitions!'

    6. well they do martin but as I'm ill I'll do anything for a quite life the last thing i need is any grief from the DWP AS LIKE A LOT OF PEOPLE I'VE HAD ENOUGH TO LAST A LIFETIME

      You have to remember that when your on benefits you cant do as you please and am always surprised how the media reports the scroungers as i have never known of any

      of course they exist people today can be quite blasé on what they can and cant do but for me i play by the rules and just tell my mp if things get to tough

      Also you have to remember that not all the DWP staff are bad it's only probably a few that behave in the way they do just like a nurse in a hospital will treat an elderly person bad

      At the end of the day how you get treated by the DWP is just down to luck some good some bad

    7. Yes, i think i understand, thanks mate. Keep the faith. The system is tough sometimes, but we know the difference between right and wrong. Big respect to you Nick.

    8. One more thing martin is in that my human rights are only available through a lawyer and the DWP over the past 33 years have at times denied them like what I can do in the home like internet use

      The DWP say that since 2008 there are very strict guidelines on benefits like incapacity / ESA support group and in their mind they won’t me to rest as I’m ill and underweight and they say that the use of the internet is not conducive to my good health in excess so the I hour restriction has been placed and won’t be removed whilst on that benefit

      They also add that if your that well to use the internet for long periods of time your fit for work and that is how a upper tribunal will see it so that's why I do as I'm told

      A good human rights lawyer could challenge the DWP for me and make my life better however, it's very expensive so I have to rely on my mp on what HE will challenge on my behalf

      If it's easy and the DWP don’t put any obstacles then great but if they do all my mp then tells I have no time to pursue this so we must move on
      I lost my tax credits due to not being able to appeal in the proper channels as my mp hadn't the time to appeal it as he would have had to come round the house to get a clear understanding of why the tax office stopped it
      So to recap human right yes their great if you can afford them but for me they are never going to happen just like in other parts of the world justice is denied

    9. Thanks Nick. It amazes me that human rights are so damn expensive these days, when i thought they were a natural birth-right. Oh that's right, government says no, unless the price is right! Give me strength.

    10. it's a pity martin that we cant get to meet those at the DWP that make the rules in their later life when there in need themselves. they would be talking a different story then you can be sure of and beg for forgiveness

    11. Yes and we, being the kind fools we are, will forgive them!

  11. megabitch - Glad you took the first sentence to heart. I can't go totally without and it's mainly because I'm allergic to so many pain meds I'm in the situation I'm in. Mine are evil.

    I also have young kids, a hubby and like writing, so lots of other reasons they don't work for m other than in extremis.

    Really glad you've found something that works for you xxx

  12. Sue brilliant description of what meds can do and cannot do. - I saw my daughter get meds to keep her alive most of which had side effects then more meds to treat the side effects and so the circle went on - transplants are wonderful things, the meds you have to take not so.

    Dani ended up with osteoporosis, renal bone disease, a replacement shoulder due to the side effects of the prednisolone, years of it. Then the cancer which required chemo, which in turn killed her transplant. Then we started the road of dialysis. Dani was only 22 when that started by which time she was well on the road of of permanent pain - we then had nurses who told her she was too young to be in so much pain, she was taking such a cocktail of pain meds but nothing worked. Then she was referred to the palliative care team who reorganised her meds, found something that worked, but then we had the nurses saying "you can't take that much you will become addicted". What is wrong with addicted if it works? better than constant pain - pain meds working for Dani meant a score of 6 out of 10. apart from when in surgery the score was never lower then 6 out of 10. They diagnosed her with chronic pain syndrome - seems this means there is no escape and very little that can be done and still remain awake.

    Watching my young daughter in pain for a very large part of her short life hurt - as a mother I could do nothing other then fight her corner and make sure she always had a fall back position especially when she was an inpatient.


  13. I did the maths. Well, the calculator on the computer did. If I pressed the correct buttons, the chances of surviving 9 operations which each have a one in 5 chance of killing the patient are about 13.42%. Well done and best wishes.

  14. No relief at all from "medical" cannabis? Or do you not have access?

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