I don't want your stupid medical adivce

Often people who think that expressing empathy is equivalent to solving problems will try to give me unsolicited medical advice - usually of the 'alternative' kind. I hate this. I'm chronically ill - which means I'm ill all the time and have been for years - and just about everyone has a (usually uninformed) opinion about the nature of my malaise and what I should be doing about it. They are often upset when I say I don't need or want medical advice. It's not helpful to try to fix my problems when you are not qualified or informed. What I need, what all chronically ill people need, is empathy - a human connection. I don't particularly want to relate to everyone on the basis of my illnesses.

Of course it feels unpleasant to empathise with someone who is suffering, especially when there's more or less nothing that you cannot do about it. So what tends to happen is that people act (unconsciously) to remove the source of their discomfort, which is my discomfort. They look for something to 'do' that will make me happy, so they can be happy. It's not helpful. In fact people often seem to be saying that I am somehow remiss in doing something about my illness. What is worse is that by not relating from their true feelings the interaction is just more isolating for me - all you care about is fixing me, you don't care about how it feels to be me. That's the message that 'fixing' sends. And after so many clumsy fixing attempts over the years it makes it far more difficult for me to be open about my experience - I don't want to be treated like a problem, so I don't say anything.

Basically if you start any sentence with "Have you tried..." I'm doing really well not to smack you in the mouth. I've had people do this time and again with absolutely no insight into my difficulties. People I hardly know send me emails starting with 'I heard you're sick. Have you tried..." I've taken the best professional advice I can get over three decades, thanks, and something you read about in some shitty little alternative health magazine is not likely to result in a miracle cure.

And you know what? I don't work so I don't have much income. I can't afford to go trotting off to the latest fad in alternative medicine because I don't live a middle class lifestyle with wads of uncommitted cash. I'm fucking broke! How the fuck am I supposed to afford those treatments at £30 and £40 or more a shot? Don't give me advice, give me money!

It's not that hard actually. If you feel uncomfortable - just fucking say so. That I can understand. Of course my being in constant pain (and in a bad mood today) is difficult, it sucks, it is a nightmare that I can't wake up from. If you aren't in pain, then you could pause to consider how lucky you are. You could express how you feel about that. Feel helpless? Well I do, so why shouldn't you?! So just say so, straight up. You don't have to try to fix the unfixable. I don't hold you personally responsible!

This isn't just me being a grumpy bastard by the way, other friends with long term problems know what I'm talking about. See this poem by Julia Darling: How to Behave with the Ill.

Antidepressants may change your personality

paxil aka paroxetine aka aropax aka seroxat

Tweeted by CognitiveTherap

Same story in the LA Times; in the Guardian.

No one talks about the way that depression changes your personality. No one asks how relevant personality tests are, nor what they measure, nor how seriously we should take them. This is a one off study of just 240 people which has not, as far as I can tell, been repeated. No one seems to measure personality before as well as after the onset of depression and treatment with drugs. This story should not be in the news at all. Medical journalism is a crock of shit. The Guardian article is slightly better written, the LA Times article is reprehensible and irresponsible.

Did you know that the information on Anti-depressant medications all say something like: "the action of this drug is presumed to be due to its effect on the levels of serotonin." [my italics] Actually they don't know, they certainly don't know why the side-effects come on within 30 minutes, and the mood effects take 2-4 weeks. They just don't know.

Blog posts of note:

Angry Mob: More Lies about the NHS. Critiquing a Daily Mail article. Daily Mail seem to get a lot of stick from more liberal middle-class commentators. Ben Goldacre reckons they characterise things into 1. those that cause cancer, 2. those that cure cancer - with no neutral ground. They are also accused of having a Princess Diana fixation. I wouldn't know as I don't read the papers much. But this seems like an important blog post because it highlights some bad reporting of medical facts generally, and some unsporting digs at the NHS.

Benefits Culture: Welfare Reform: penalizing claimants and carers. A round up of news on reforms especially of the law as regards mental health. It seems as though the general mood of the government is to take out their mismanagement of the banks and economy on the least fortunate while allowing bankers to claim bonuses for running banks into the ground. They also want to punish all sick people because a few people rip the system off. Could we focus on the cheats and frauds (at all levels including the government!) and leave the sick people alone do you think?

Look at how lightly the MPs get off for their frauds: no jail terms for instance, no one got sacked, some of those (gracefully) leaving parliament next year will still get their fat pensions! Listen how loudly and plaintively those who were honest complain about being tarred with the same brush - not so much fun when the boot is on the other foot, is it!

Red Tape II

I was a bit nervous about filling in the BF85A form and getting it wrong so I rang the DWP to ask about it. (twice!). They reminded me of another layer of red-tape. In 2005 I was out of the country for 4 months and did not pay National Insurance. As a result I do not, and apparently cannot ever qualify for Incapacity Benefit or Disability Living Allowance because my claim dates from a period when I did not have two years of consecutive NI contributions. (Note that I can and have topped up my NI contributions for the purposes of State Pension, but it cannot alter my situation vis-a-vis IB or DLA.)

So all I get is Income Support on the basis of incapacity. Trouble is I'm sure I recall getting a letter saying that I was now in receipt of the lower level of DLA at some point. I haven't found it yet. Should I be trawling through my files to make sure, or just accept that they are giving me accurate information over the phone (when we know that the point of the form is to check their records because they do not trust them)?

My instinct in dealing with Government departments is never to volunteer information; always wait to be asked directly for it, and then supply it with alacrity. This is because volunteering information usually causes problems. (Though keep in mind "Changes that you must tell us about"!). In which case the BF85A becomes a relatively straight-forward exercise - I don't get any of the benefits they ask about and have no "changes you must tell us about" to tell them about.

Red Tape!

The Department of Work and Pensions, the government department which pays me Incapacity Benefit and Disability Living Allowance has just asked me to fill in a BF85A form. The front of the form is filled out with my details, BY HAND. The first question requires me to tell them what benefits they pay to me and how often they pay it to me. One of the questions is "who is getting or waiting to hear about this benefit?" Could they make it any less personal I wonder?

This is so mega-fucking-stupid! It's so inefficient! If they don't know what they pay me, how often, and for what reason, then they are fucking incompetent. How hard would have been for them to tell me what they are paying me and ask if it's right? Tick yes, over and done with.

This is why I have to keep good records - because the only way I know what they pay me and why is to check the letter that they themselves send me, usually once per year. Sure, I get an amount in my bank account regularly, but it has no details about why I'm getting it. I have three weeks to fill in the form and return it - with Christmas post that's more like one week.

They also sent me an IB40 which is a 24 page brochure about the Incapacity Benefit. This in fact clears up the mystery of the "CHANGES YOU MUST TELL US ABOUT" in the letter (from the DWP) telling me I qualified for Incapacity Benefit as pages 14-17 explain "Changes you must tell us about". Actually in rummaging through my files I also found an INF4(IS) which is infact this same information on a separate sheet.

I take drugs!

In my youth I used to take illicit drugs. But in 1992 I gave all that up as a dead-loss. Drugs never made me happier, and if anything made me more unhappy by causing me to take poor decisions and covering up the underlying unhappiness. However over about three decades now I have taken a variety of prescriptions drugs (or meds as we veterans of the mental health system tend to call them), not all of which I can remember. Drugs are the first and often the only line of treatment for my several ailments: depression, anxiety, pain, migraine.

Depression

Anti-depressants form by far the largest category of drugs I've taken. These drugs all affect different people differently - sometimes oppositely for instance you might lose/gain weight or feel drowsy/hyper-alert (I get fat and dopey). I'm hyper-sensitive to dose changes and could be badly affected by such things as when the chemist changed brands.

amitriptyline. This is one of the earliest ADs and still a front line drug in many places. It is soporific to some extent (a large extent for me) and so goes well with insomnia. In lower doses it is widely prescribed for pain (which how I first started on it). I would not go so far as to say this drug ruined my life, but I do think it cost me my marriage, and about ten years of my life lived in a daze. As I overdosed on it 10 years ago it did nearly cost me my life in that sense. It is still offered to me whenever I see someone new.

Various tri-cyclics with much the same effect: imipramine, prothioden (aka dosulepin), trazodone, plus a couple I don't recall the names of.

paroxetine. Took this for several years. Quite useful. Main side effect was delayed orgasm which the Mrs enjoyed (before she left me). However getting off this shit is tough. The withdrawal effects are savage! Massive headaches and nausea - it goes on and on! Smallest pill is 20mg, but you really need 1 mg steps to easy off it. 20 > 0 would be unthinkable, and I was cutting these bastard oval pills into 4ths and 8ths!

fluoxetine (aka Prozac). Sent me to sleep - supposed to be stimulant! Was dozy for a few weeks before deciding I'd rather be depressed.

citalopram. snooze...

I've never been able to afford St John's Wort, as it is fucking expensive. Currently I don't take depression meds, though with the English winter coming on I'm thinking about it again. I was often on two ADs such as Paroxetine and Amitriptyline.

Anxiety

stellazine - used as an antipsychotic, but in smaller doses for anxiety. To be honest I have no recall of how effective this was, but I did overdose around that time, so perhaps not very.

thioridazine. Also sometimes used as an anti-psychotic, but given to me for anxiety. I remember that it dried out my mucus membranes, made me constipated and caused me to suffer because I had haemorrhoids at the time! But it also made me dopey. The psychiatrist lied about the side-effects and then got indignant when I told her she was a fucking bitch (she got her own back in my records by saying I had "unrealistic expectations" - fucking bitch).

(These more serious anti-X drugs come with powerful side-effects that make them extremely unpleasant for me to take. Really not worth it for anything short of psychosis - which I don't suffer from, despite what people think!)

diazapam (aka Valium) one of the benzo-diazapines which are bit like opiates. This is wonderful for anxiety, but hideously addictive. Hard to get Drs to prescribe this stuff - much harder than temazapam (see below). Usually take this for going to the Dentist to stave off panic attacks. Love this stuff, and thank goodness I never got access to it in my recreational days!

Insomnia

temazapam - gets me off to sleep when nothing else works, although not always. Sometimes I'm just too wound up to sleep and even these don't work. Quite addictive so I try to keep the dose low and spread them out. Also a bad hangover. Some time back had another benzo called clonazepam (aka klonopin) - much the same (though I was taking more than prescribed so the Psychiatrist stopped them - probably just as well!)

Herbs. Things like hops, passion-flower, and valerian root do actually work as soporifics, though in my experience all cause a hangover if I take enough to get a noticeable effect. Kava kava used to work quite well and was freely available in NZ, but has been banned in the UK because one person in Europe had a bad reaction.

Pain

Various over-the-counter combinations of ibuprofen, paracetamol and codeine. These are helpful on minor pain days.

NSAIDs (Non-Steroidal Anti-Inflammatory Drugs).

diclofenac being my current poison. Long term kidney damage a bit of a downside. One per day max or bad stomach problems.

naproxine and similar drugs depending on what the NHS are buying at the time.

brufen - basically slow release ibuprofen. Haven't used it for a while.

Nerve-agents (aka anti-seizure drugs) These are prescribed on the basis that my pain nerves are over active (fucking A). They work by reducing the electric potential of nerve cells and dampening nerve activity.

gabbapentin. Specific to pain nerves so less likely to cause overall drowsiness etc. For me caused unpleasant hallucinations a bit like a bad trip on magic mushrooms. Not good, not something I enjoyed even in the bad old days.

carbamazepine. Good pain relief but completely fucked me up - could barely remember my name! Three months in the twilight zone. For a long time after I stopped I did not need painkillers - my longest stint in years. If only I could adjust to having 50% of my present IQ and no particular ambitions this would be the thing for me!

The weirdest pain treatment I had was injections of local anaesthetic into the affect area (i.e. the back of my neck) I nearly passed out - there's something very un-natural about being injected in the neck! Didn't do much else though.

In conclusion

I also take migraine medication (maxalt) occasionally. And of course I eat a shit load of dark chocolate (containing anandamide, theobromine, phenylethylamine and tryptophan) - fortunately my migraines are not food related! Had one today - take a pill, head to bed, and when I wake up it's all over. Grateful for this stuff.

On the whole I've found that most drugs just fuck me up, and I'm better off without them - I try to take the minimum, and I'm better at handling the pain now anyway. The alternatives are all expensive and although I'm grateful to the NHS they don't pay for the things I find most useful like ongoing psychotherapy. I could do with some physio as well, but I can't get the Docs to agree to it. Don't even fucking talk to me about alternative medicine - I've never felt the slightest effect from homeopathy, or any other 'alternative'. The best I could say is that they seem to be harmless - if pointless and expensive.

One of the best things for all of the above is laughing. So now I try to see and hear as much comedy as I can. This means that the BBC is as important to me as the NHS. I love the News Quiz, I'm sorry I haven't a clue, the Unbelievable Truth, Mitchell and Webb; and Have I Got News for You, Never Mind the Buzzcocks, Mock the Week. The BBC fosters so much comedic talent. Jeremy Hardy is my laughter physician. He'll most likely never read this, but I salute you Jeremy. Laughter helps with pain, it helps with anxiety and depression. It just helps.

Panacea

Sometimes all the cognitive therapy techniques and affirmations in the world don't help. Mindfulness is the next big thing in 'treating' depression and anxiety - and people I know are heavily involved in this new industry. It does help, but it's not a panacea. (Beyond Blue)

There's that old saying: when the only tool you have is a hammer, then everything starts to look like a nail. The mindfulness brigade are a bit like this at times.