Saturday, 25 February 2017

Heart Sink

Trying to talk myself out of a panic attack sitting outside the GP office like a naughty student at the headmasters office. I'm waiting for the paperwork for a transfer to hospital and I am, of course, very scared. There are two ways that my appointments usually go, the younger doctors tend to look a bit panicked, the older ones get that "Heart Sink" look.

If you aren't familiar with the phrase "heart sink patient" well lucky you! Its a rather derogatory term for patients that are seen as a pain in the backside and you get that 'heart sink' feeling when they enter the office. If you google it you will find stories of doctors who have these AWFUL patients that waste their time with their (probably fictitious) idiopathic pain. These patients are never *happy*, never get better, just keep coming back! Before you feel sorry for those overworked GPs and their difficult workload, listen to the other side of the desk.

The doctor I saw was less experienced, she started to look panicked as I outlined my worrying symptoms and history. By the time I was finished she has physically moved back from me, like I was an un-exploded firework that may go off at anytime. Still wet enough behind the ears to hope for a more senior person to take this train wreck off her. The obvious choice, of course, being the hospital, they'll know what to do. She is of course making the right decision, anyone this medically complex needs investigation.

I want to make something absolutely clear, this next point is vitally important, please take it in and digest; I don't *want* to go to the doctors and I'm terrified of the hospital. No, I'm not bored, lonely, slacking off something, looking for attention, the *only* reason I would consider going to the hospital is if I *believe my life is in danger*. Four times the hospital sent me home on the verge of heart failure, twice they sent me home with acute pancreatitis (if you don't know what that is, it will kill you if not treated), FOUR times they sent me home saying it was impossible for my condition to have progressed the way I was claiming (which it had and it was potentially fatal) FIVE HOURS I sat in A&E before anyone noticed that I was slowly bleeding to death. Every time I was treated like I was a time waster, mentally ill, attention seeker, I was told that I needed to get serious psychiatric help or that I didn't love my kids and wanted to get away from them. That is abuse, it is gas-lighting, belittling behaviour dealt out by someone in complete control of your life. One night I was in agony all night with pancreatitis and the nurses withheld painkillers for hours and then made fun of the way I was acting "looks like shes about to give birth!". The hospital is *not* a fun day out for me, it is somewhere that I have nearly died several times and a lot of the time, not in the best care. Not that I'm saying all doctors and nurses are like that, not at all. I used to sit on that side of the desk, they're just people, people who set out wanting to help other, people who under the right circumstances easily slip into institutional abuse. People who label patients as "heart sink" or "frequent flyers" and cant see them as fellow humans anymore, just a problem to be passed on as soon as possible.

On a normal day I wake up exhausted and in pain, having had little sleep, because it feels like my mattress is full of rocks. Its not of course, in fact its a relatively new and not cheap mattress, but everything HURTS ALL THE TIME. After several complicated conditions my body has had enough and rebelled, now I have chronic pain and fatigue. That's how you become a "heart sink" patient, you survive. Maybe you get through one particularly traumatic accident, or an all too close health scare, you pick yourself up and dust yourself off. The doctors involved in saving you get a well deserved pat on the back. Perhaps you are even interesting enough to get a case study written about you and all the student doctors want to talk to you because you are such an interesting specimen. You take yourself back to work, whatever your daily routine looked like before and you are happy to be alive. You are a success story!

Then, a few month or a year later something else happens, you nearly loose your life again. It takes that bit longer to get back on your feet and you don't feel able to do quite what you did before, there are complications. After two close calls where you were fobbed off as "over anxious" you become a self fulfilling prophecy, becoming anxious about health concerns, about every time you need to see a health care professional. You end up sitting outside the doctors office trying to talk yourself out of a panic attack, because you know once you panic, or start to cry, you loose all respect from the doctor and become a problem no one wants. An over anxious, crying, hysterical woman with a complicated medical history.

So why do I keep going back to the doctor with constant complaints of fatigue and pain  and other conditions that never get better? Well because, I remain, as a fellow "chronic" said to me, 'defiantly alive'.

2 tired and a toddler

Friday, 17 February 2017

York National Railway Museum


 I felt like crying, sat on the train to York, having experienced Manchester Piccadilly for the first time with a wheelchair. After being shouted at for being so inconsiderate as to have a disabled child and not alert each train provider along the way, whilst my preschooler was crying and I was trying to negotiate a wheelchair off a train, I was feeling like we might never venture out again.
 The journey started out pretty negatively, got to the station and realised our local station has no disabled access, that is, they have a ramp upto the ticket box, but you can only get on the trains in one direction. To access the other platform you have to cross a footbridge. Through the kindness of other passengers we managed to get to our train. Am I out of order in thinking that in 2017 there shouldn't be anywhere that doesn't have disabled access? Train fares are ridiculously expensive and will only continue to rise, yet a disabled person cant access a train without prior booking and going to a larger station to ensure they can be "accommodated". Maybe I am just spoiled, living in Greater Manchester with it frequent, disability friendly bus services. I defy any CEO of a train company to go out with two kids, one in a wheelchair and not despair at the state of the railways. 

York National Railway Museum was lovely, free to enter, but you must go past the tills and the eager staff ask you for a suggested donation of £5 each. Most things are on the same level, a few ramps and one part where you have to use lifts. But I didnt need to get kind hearted blokes to carry the wheelchair up and down steps, so it was vastly superior to the actual railways.

My son is obsessed with everything to do with trains and railways, so to see the "real" Stephen the Rocket, Stafford, Blue Mallard, Eurostar was thrilling for him. There is also Hornby railway set up for you to geek over. The shop sells wooden railway, Thomas and friends Take N Play and Hornby. My son also wanted a "Stephen the Rocket" badge to show off at nursery. Maybe it takes a special kind of person to want to take the trains to see trains..? Nah.

The Buffet Car sells a variety of food in the theme of... a buffet car. Staff were lovely and helpful, helping me by carrying my tray for me and happy to assist with choices. My daughter got a hummus and veg butty with chips and couldnt finish it. I was stuck with just chips, as usual. They had soya milk for coffees though, which is a big plus! 

I have to say for balance that on the way back the conductors were very helpful and were more than happy to help me on and off trains with the wheelchair and a toddler!

 Maybe it just depends who you get working on your train and their mood? 

Perhaps some of the staff could do with some disability and inclusion training? 

Or maybe they were just dicks? 

2 Tired and a Toddler.