– 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.
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%)
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%)
Diarrhoea (no figures but not uncommon)
Inability to concentrate (54%)
Muscle/joint pain (52%)
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.