A Matter of Perception

Suddenly becoming disabled, be it due to Fowlers or any other illness/injury, completely changes the way in which you view the world – and in the way in which the world views you.

Using a wheelchair, you realise how uneven pavements are, or how tightly packed some spaces are. You realise how unpleasant disabled toilets combined with baby changing facilities are. 

You also discover that the attitudes of society towards the disabled often leave a lot to be desired.

I recently attended a national political conference in my wheelchair and while, on the whole, I was treated pretty equally one particular incident sticks in my mind:

Perusing the huge array of stalls set up in the foyer of the venue, I came to the stall selling party merchandise. One of the staff clearly saw my physical disability and assumed I had some form of mental impairment too – her condescending, patronising manner towards me, literally patting me on the arm and giving me some “lovely pencils and notepads dear” was proof of that. My Dad’s response that they would come in handy for my university work clearly shocked her! Unfortunately this is far from the only example I could give. People have a tendency to make assumptions about why a young person is in a wheelchair – the idea that it’s purely down to a physical limitation often seems to be unexpected.

Another bugbear is the way in which people seem to think manhandling somebody in a wheelchair is being helpful. While I fully appreciate that it’s wellmeaning most of the time, if we need help we’ll ask for it. Invading the personal space of a person in a chair by maneuvering or otherwise making physical contact with them is not appropriate.

Being adjudged to be faking or exaggerating a condition is also depressingly common. A young person with a blue badge is often viewed with suspicion and we’re frequently expected to justify ourselves. Just because someone is young, attractive and clearly not paralysed, that does not mean that they are abusing the system and playing the disability card for easier parking or shorter toilet queues.

Even animals can respond differently to the presence of a disabled person. Recently, I visited my local pub in my chair and a little terrier-type rescue dog who wasn’t used to seeing wheelchairs got rather over-excited every time I moved, giving chase where ever possible. I’m actually not comfortable around dogs so this wasn’t a pleasant experience!

I guess what I’m getting at is this: next time you see a person walking with a stick or using a wheelchair, don’t judge. Don’t assume that they are just physically disabled, just mentally disabled or faking. Don’t feel entitled to treat them any differently or with any less respect than you would if they were able bodied.

K x

The Domino Effect

Fowlers Syndrome is, of course, an illness which primarily affects the bladder. The few treatments are focussed on that one area, and that tends to be people’s understanding of the condition.

What can be harder to recognise are the many far reaching consequences in the life of a Fowlers girl.

A fairly basic example relates to medications. While these become essential, to control spasms and relieve pain, they create their own problems. Side effects such as nausea, constipation, dry eyes/mouth and fatigue can have a massive effect on the way sufferers live their day to day lives.

This blog has talked previously about the link between Fowlers and bowel problems, which are even more taboo and unacceptable to openly acknowledge.

Being in pain every single day and coming to terms with reduced mobility can, at times, make life seem utterly pointless and not worth living, especially for young women who were previously fit and active. 

Frequent hospital admissions and cancelled plans create a dreadful state of social isolation for many sufferers. Jobs, friendships and self esteem are lost and invites to parties etc slowly dry up.

The impact that suddenly living with a catheter or stoma has on a young woman’s body confidence should also never be underestimated. Many Fowlers girls struggle to adjust their wardrobes, style and self expression whilst battling to conceal embarrassing and ugly medical devices. The fact that their bodies have ceased to carry out a basic natural function – urination – can also have a huge negative impact on the way that sufferers view themselves.

Fowlers may be a bladder condition, but the knock on effects are copious and unexpected. 

K x

The Long Road to Recovery

Fowlers Syndrome in itself is, frankly, exhausting.

Being in a constant battle with your body every single day rapidly becomes wearing.

Having to explain yourself and your condition to every doctor, nurse and new friend is tiresome.

Being reliant on strong medications that often cause fatigue is not pleasant.

Recovering from surgery is a whole different ball game.

Even minor surgeries cause tiredness and pain, and hospital stays are rarely restful.

Bigger surgeries have added implications in terms of longer physical recovery and a need to mentally adapt to a new reality.

Fowlers sufferers are young women, and it can be very hard to accept suddenly being catheterised or ultimately requiring a stoma. Self-image can be very negatively affected.

It’s also hard when people assume that any treatment or operation endured has been curative, that we’re suddenly and magically better. Sadly, Fowlers doesn’t work that way. We go through all this and we’re still sick. 

The most important thing that people can remember is that we are on a very long road. At times, our energy levels will rise, but often they will plummet. It might seem like we’re wallowing, when really we’re just physically and mentally exhausted by the things we have to cope with.

In the words of good old Take That, have a little patience.

K x

My Urostomy Journey

After five years of Fowlers symptoms and two years with an official diagnosis, last month I finally underwent the only surgery that offered a realistic chance of getting my life back – a urostomy.

I went through six months of self catheterising, eighteen months with a suprapubic catheter and no fewer than twenty hospital admissions, including around eighteen anaesthetics in the lead up to this huge procedure.

A urostomy is not a decision to be taken lightly, and not every urologist will agree that Fowlers warrants such a drastic intervention. I was very fortunate to be referred to a specialist who agreed it was the only way forward, but many other Fowlers girls are still fighting for even basic treatment whilst enduring every bit as much as I did.

My urostomy journey was tough to say the least:

The actual operation took around six and a half hours. I woke up with a central line in my neck for IV access, a drain in my stomach and an epidural in place for pain relief alongside a pump providing fentanyl as additional pain relief.

There were some complications which culminated in me suffering a respiratory arrest – I stopped breathing. Fortunately the hospital very swiftly got things figured out and I’m here to tell the tale, but it gives you an idea of the risks involved in such major surgery.

Despite the pain relief in place the first few days were extremely sore, the removal of the drain was the worst pain I’ve ever experienced. I was physically and mentally exhausted and seriously wondering if I had done the right thing.

Seeing my stoma for the first time was an extremely emotional experience. It looked horrendous, as did the huge incision from below my bikini line to above my belly button which was being held together by 37 staples. It felt as though my body was completely ruined and I couldn’t imagine this ever being normal.

It took several days to really start to come to terms with things and it was important to have as much support as possible from family, friends and specially trained stoma care nurses who could answer my questions and allay my fears.

I spent a full month in hospital as unfortunately I developed sepsis and required further surgery but this was not directly related to the urostomy.

I’m now five weeks post op and slowly starting to get my head around my new normality. I still find my scars difficult to look at and the stoma itself isn’t the most pleasant looking thing but already it is clear that this was the right thing to do.

Before, I was constantly dealing with horrendously painful bladder and urethral spasms.

I was frequently undergoing emergency surgery because my catheter kept expelling.

I was missing out on so many special occasions and struggling to keep up with the demands of uni.

Ok, so at the moment I’m still extremely fragile and it will take up to six months to heal properly, but I can see that a lot of my problems will be in the past.

It is important to note that a urostomy is not a cure for Fowlers and that the damage the illness has already caused to my body is irreparable. I’m not magically back to perfect health and I will always live with the consequences of the first part of my Fowlers journey. I’m just glad to finally be making progress.

K x

Prevention Is Better Than Cure

One of the most devastating thing about receiving a diagnosis of Fowlers Syndrome is that there’s no cure.

No magic wand to be waved, no pills or surgery to allow a return to normality.

Ok, there are unpleasant treatments and major surgical interventions which can help manage the symptoms, but nothing is ever going to make it go away.

Adjusting to life with a catheter or even a stoma is tough. Popping dozens of pills a day just to function is like some sort of cruel and unusual punishment.

A cure for Fowlers would be amazing, but…

Some way to prevent this evil illness from even taking hold would be so much better. So many women would be spared so much pain, spared such frequent hospital admissions, spared from life threatening complications like sepsis.

The key is research, but sadly little is being done. Fowlers is a rare illness and there’s little interest in pinpointing the exact cause and finding a way to treat it.

Fowlers deserves more of a fight. Sufferers deserve more of a life.

K x

Support Groups

Within the chronic illness world, many people find themselves seeking out online support groups, finding great comfort in being able to talk frankly with people who can relate.

Personally the Fowlers community online has been a lifesaver for me and I’ve been blessed with some genuine life-long friendships with amazing young women facing similar struggles to mine.

Unfortunately, what I’ve seen far too much of lately is the dark side of these online communities: the accusations, the bullying, the ridiculous bitching and fall outs.

Being sick is not a competition. 

You don’t have to prove that you’re sick or the sickest.

Illnesses and treatments will not always affect different people in exactly the same ways.

Just because your consultant hasn’t suggested or even heard of a treatment, that doesn’t mean it doesn’t exist.

Just because a particular symptom isn’t something you’ve experienced, that doesn’t make someone else a liar.

Something you see as amazing may utterly terrify others.

Not everyone is going to get on, that’s human nature, but there’s absolutely no need for the dramas and distress sadly so common within groups whose key aim is to offer support.

Support. Not aggression.

Support. Not judgement.

Support. Not accusations

Support.

It’s perfectly possible to scroll past a post where you have nothing constructive to add to the conversation.

Of course, it would be remiss of me not to acknowledge that sometimes these groups do attract hypochondriacs and malingerers. It’s a dangerous road to identify these cases though, and attempts to do so can cause a lot of hurt to genuine sufferers.

In any well run group admins will work hard behind the scenes to  ensure the safety of members and should be happy to listen to any concerns about “fakers” in private.

It really saddens me to see such positive resources destroyed by negativity. 

Hopefully this post might make those of us within these groups think for a moment about our own contributions and be a little bit more aware of how we come across to people who are supposed to be our friends. 

K x

The Hard Facts

Fowlers in itself is not a life threatening illness, but it is absolutely a life changing illness.

Permanent intervention in the form of catheters or urostomies are required.

The pain can be unbearable. Both bladder and urethral spasms are excruciating and sufferers are often left reliant upon opioid painkillers which present their own risks including bowel issues and addiction.

Frequent hospitalisa tions are disruptive, frustrating and exhausting. 

Having to take antibiotics for frequent infections can result in them becoming ineffective and many have unpleasant side effects such as nausea and thrush. Infections can also easily lead to sepsis which can kill.

Surgical procedures are inherently risky, and having multiple anaesthetics in a short period of time can be extremely dangerous.

Both the kidneys and the bowel are at risk of damage due to infections and medication side effects, the damage is potentially irreparable.

The average age of onset is just 26 years old, with young, active women suddenly rendered disabled with little or no warning.

Worst of all: there is no cure and it often feels like there is no hope.

Hopefully this post gives a little bit of insight into what damage a trivial-sounding “bladder problem” can actually do.

K x

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