Parking Wars

When you become disabled by any condition, so many things that you always took for granted become a challenge.

The misuse of parking spaces which are meant to be for blue badge holders only is something that often becomes a major bone of contention.  These spaces are a legal requirement as it is recognised that people with disabilities need wider spaces in order to safely exit their vehicles, and shorter distances to travel between car parks and shops/restaurants etc.

I couldn’t get out without my blue badge. Normal spaces are far too narrow for manoeuvring my wheelchair and I can’t cover much of a distance even on a good day. Before I got my badge I hardly ever went anywhere because it was so challenging.

Acquiring a blue badge is far from a simple process. You must be in receipt of certain benefits, which are extremely extremely hard to get, and also willing to pay a fee as implemented by the issuing local authority. They don’t just hand them out for questionable reasons, if someone has a badge they do need it. – even if they “look healthy/normal” etc, plenty of disabilities, including Fowlers, are invisible.

You also have to be prepared to accept that if you are young and clearly not paralysed then random strangers will accuse you of faking or exaggerating a condition in order to get a badge. You will get dirty looks and snide comments, and you’ll very quickly get sick of it.

Next we come to something which seriously gets on my wick: people viewing Parent and Child parking spaces as a right, on par with disabled spaces.

First and foremost, P&C parking spaces are a courtesy. Nowhere is obliged to provide them.

I completely understand it’s not necessarily easy to get a child out of a vehicle in a standard space, or to convince a child to walk a greater distance to an entrance.

However: P&C spaces and disabled spaces are NOT equal. When people complain that there are no P&C spaces available because people are misusing them, it’s an inconvenience. When there are no disabled spaces available because people are misusing them it is often the difference between somebody being able to go somewhere or not. It’s all about perspective. If disabled spaces are full blue badge holders are entitled to use P&C spaces but not the other way round and that is for good reason.

Ultimately, everything about having a child is a choice. Being disabled isn’t.
Parking might seem like a trivial matter in the context of Fowlers or other long term conditions, but illness and disability can be so isolating and sometimes the little things do make a very big difference.

K x

The End of the Road

​https://urostomyassociation.org.uk/

Since being diagnosed with Fowlers Syndrome in September 2014, I have endured 6 months of self cathterisation, 18 months with a suprapubic catheter,  15 operations under general anaesthetic and goodness knows how many outpatient appointments and embarrassing tests etc.

My mental health has suffered every bit as much as my physical health and it’s become increasingly clear that going on like this for the rest of my life is simply not an option.

A couple of weeks ago, I had an appointment in Edinburgh to see a highly specialist urologist about a long term plan for the management of the illness in my case.

Ultimately, it’s been decided that there is only one way forward – I need a urostomy, and it’s happening very quickly.

A urostomy entails the ureters being disconnected from the bladder and diverting urinary output to a stoma created using a section of bowel. The stoma sits above the skin on the abdomen and requires a stoma bag to be worn at all times.

In some cases the bladder is removed entirely, but this can cause risks to the uterus therefore in some cases it’s left in situ but completely disconnected and redundant.

It’s an absolutely huge operation, physically, and I’ll be in hospital in Edinburgh for at least ten days but potentially far longer. The initial three months post op are extremely tough and will be a bit of a write-off. (Amazon to the rescue for Christmas shopping this year!)

A urostomy is irreversible, and very much a last resort.

It’s taken me the best part of a fortnight to finish writing this post because it’s been a lot to get my head around, but I know it’s something that has to be done. 

I’m fortunately in contact with a couple of other Fowlers girls who have been through this procedure already and in particular I want to publicly thank the beautiful Polly-Anna Mason for her support, answering pathetic panicking messages at all times of day and night.

It’s just under two years since I was diagnosed with Fowlers and a lot has happened in that time, but I ultimately need to have faith in the medical team around me and be grateful for the support I have from friends, family and Fowlers girls alike.

K x

 

The Danger of Sepsis

​http://www.nhs.uk/conditions/blood-poisoning/Pages/Introduction.aspx

Since starting this blog I’ve talked fairly extensively about the urinary tract and kidney infections that come with Fowlers. What I’ve never discussed in any detail until now is sepsis.

Sepsis occurs when an infection spreads to the bloodstream and it can rapidly cause serious difficulties. Left untreated, the condition can develop into septic shock and will often prove fatal.

A simple infection can turn septic alarmingly quickly. Caught early, it is easily treatable with intravenous antibiotics.

If septic shock occurs, symptoms may include dizziness, vomiting, diarrhoea, slurred speech, confusion and decreased urinary output. Septic shock is a medical emergency often resulting in admission to High Dependency or Intensive Care wards.

While sepsis can be quite obvious, in some cases patients will have fairly normal bloodwork etc but still be seriously ill. Doctors need to be able to identify that if someone at risk of sepsis is becoming symptomatic then it’s better safe than sorry and treatment must be given.

The long term consequences of septic shock include multiple organ failure and issues with abnormal blood clotting.

Fowlers patients are regularly at risk of developing sepsis due to frequent infections and it’s absolutely imperative that more awareness of the danger of sepsis is raised to prevent devastating events such as what I am about to discuss.

In 2014, baby William Mead in Cornwall died of septicaemia after a string of medical staff failed to spot the warning signs of the deadly disease, which arose from a chest infection. William’s heartbroken parents are tirelessly campaigning for increased awareness of sepsis within the medical profession, and both their GP practice and the Out of Hours service were criticised in an NHS England report which concluded that his death was avoidable.

Please, share this far and wide, get the message out there, and save lives.

K x