I wish that for just one time you could stand inside my shoes…

– Bob Dylan, Positively 4th Street

And just for a brief while – it might bring understanding – I wouldn’t wish longer on my worst enemy.

There are people from whom I expected – not unreasonably since they claim to be friends – a degree of support and understanding for why I am so angry at my doctors, and so scared that their neglect will kill me.

What I got instead, when I asked for a little help and support** was antagonism and accusations of paranoia. And that  distresses me even more – paranoia is a mental illness (I’m not paranoid, by the way, as you’ll see***), and it needs  compassion and understanding – NOT condemnation.

**Something I have never done before in my life. I always felt that if I couldn’t deal with my own problems, I shouldn’t ask anyone else to do so. This time, though, I was almost suicidally depressed and simply couldn’t cope alone.

***But if I were paranoid it would be perfectly understandable!

So if you’re reading this, and consider yourself my friend, please click through to this document, and read it.

http://www.addisons.org.uk/comms/publications/gpaddisonsleaflet.pdf

It’s quite short, about an A4 page in total. It’s a guide to treating Addison’s Disease, for GPs. It details exactly what my GP should be doing for me, and isn’t.

Because, other than prescribing the bare minimum** of hydrocortisone tablets, what he is doing to support me is absolutely nothing.

And it’s that which angers me.

And frightens me.

And puts my very life at risk.

And you know what really puts the icing on the cake? The stress that all this causes ALSO puts me at risk. In Addison’s, stress can kill.

And that is not fucking paranoia!

Can you understand that?

**One month’s supply, no extras for emergencies. The recommendation for Addison’s patients is six month’s supply to reduce the risk of running out.

When I’ve been discharged from hospital (3 times last year, almost 10 weeks in total), I was sent home with a large amount of hydrocortisone – but no advice as to why that was. Had I known I had Addison’s then, I’d have squirreled them away for emergencies.

I should also have a hypodermic syringe with a supply of 100mg hydrocortisone ampoules, in case of an Addisonian crisis.

I have, by the way, had no reply, as yet, to my letter to my GP asking him to confirm that I do have Addison’s. The cynic in me thinks this is because he thinks that as soon as it is confirmed, my demands for better medication and support are going to escalate. And they bloody well are!

I, personally, have no doubt. Everything matches – this raft of conditions that got me admitted to hospital in March-April last year are a perfect match for Addison’s – the percentage of patients presenting at diagnosis is in parentheses):-

Permanently tired (94%)

Dizzy/fainting (79%)

Low blood pressure/Postural hypotension (77%)

Weight loss (86%)

Anorexia (I’ve simply called this starvation previously, 76%)

Weakness, particularly in hands/arms – loss of muscle mass (91%)

Vomiting (55%)

Diarrhoea (no figures but not uncommon)

Nausea (73%)

Inability to concentrate (54%)

Muscle/joint pain (52%)

Headache (33%)

Stomach pain (33%)

A few weren’t on the original list as I wasn’t aware of the link to Addison’s until this weekend (Source for percentages the Addison’s Disease Support Group http://www.addisons.org.uk/comms/publications/gpdiagnosingaddisons.pdf ).

NB: The document is screwed up – page 2 is where page 1 should be, and vice-versa.

And, of course, adrenal insufficiency was dropped in my lap in APH, though it meant nothing at the time, and the reams of information NICE says I should have had never materialised.

In the total absence of support, I have invested £56 in a MedicAlert bracelet, in the hope that in the event of an Addisonian crisis the information on it will help keep me alive, because on current evidence nobody in the medical profession seems to give a shit whether I live or not.

Suicide is one thing – at least that’s my choice. Dying from neglect and indifference is a whole different ball game, and wholly unacceptable.

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9 thoughts on “I wish that for just one time you could stand inside my shoes…

  1. Ron, I just do not know how you cope…would an appointment with your MP be of any help?
    I don’t have an answer for you, but I certainly read your blogs and just wonder how you are actually still alive…

    • To be honest, Chrissie, I don’t know how I’m still alive. Or why. Right now not being alive has its attractions – all I’m doing is waiting for the next load of shit to arrive. And it will. It’s only a matter of time before the steroids cause a gastric bleed. With any luck it’ll hit an artery take me off.

  2. Ron, I sure do hope that things get sorted out for you soon, it’s seems to have been one battle after another for you. Medical diagnosis’s are really confusing and hard at times as so many of them have the same or close to the same symptoms, it then becomes a process of elimination, however this has been going on for you far to long. Best of luck to you Ron. xx

    • For my GP this one is really simple – and very expensive. It’s already been diagnosed in hospital a year ago, and he’s been prescribing for it ever since. I have Addison’s – of that there’s no doubt. I just want to hear him say it, then I can start pushing for all the stuff he hasn’t been providing for the past year – which is when it gets expensive for him. Too damn bad!

  3. Ron
    I’ve got a friend with Addisons and she has all the help you are asking for so I certainly don’t think your needs are unreasonable!

    You need the training from an expert on how to spot a crisis and respond; like you’ve said, the consequences can be fatal.

    My own GP is useless and I get angry too that THIS person is meant to patients’ advocate and conduit to services outside primary care. If they don’t do their job we are left with pleading for the help we know we need.

    Please don’t be angry that people don’t understand depression. Mental health issues can be scary for those who are unaware or uneducated about them. My friend said she found speaking to someone who had just lost a loved one easier than having a conversation with somebody who had depression! I’m sure your friends were trying to be helpful, a bit like people advising you to try reflexology or Bach remedies to cure your COPD- you know their idea is useless but have to appreciate they tried to help albeit in a misguided way.

    I can hear the frustration screaming off the page. I just wish your GP could read this and comprehend how distressed this is making you and appreciate that he has the ability to improve things for you just by doing his job.

    • I actually wrote to my GP saying much the same thing https://ronsrants.wordpress.com/2014/03/20/a-letter-to-my-doctor-re-addisons-disease/

      No reply to it so far. I know he got it because I faxed it, along with my repeat meds request, and he got that which means he got both.

      I don’t know what he hopes to achieve by ignoring me – but what he will achieve is a complaint to the Care Quality Commission if he doesn’t do something very soon.

      I’m not angry about failure to understand depression, but a failure – or an unwillingness – to understand why I’m so angry and frustrated when they know exactly what I’ve had to put up with in terms of medical incompetence this past year. And it’s still ongoing.

      I’m just trying to stay alive, not trying to piss them off.

      • I don’t think the medical profession understand how many Spoons it takes to write letters like yours, or even chase things up on the phone. Please dont give up- if you do they win!

        • I almost never use the phone for that reason. Plus I’ll forget what was said as soon as I hang up, so I use fax, or email, or even SMS – anything as long as it’s in writing and I have a record of it (the GPs have email, but patients aren’t allowed to use it – really helpful!).

  4. It’s bad enough that you GP doesn’t come to visit you, but to have your friends treat you in this way just goes beyond the pale. They should all be ashamed of themselves.

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