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Living with Ulcerative Interstitial Cystitis: Slow growth, quiet resilience, learning to pace and dealing with being left behind

Ulcerative Interstitial Cystitis header with lady holding her stomach

This is a guest blog written by a woman called Lucille Whiting, Founder and Lead Designer Maker at Sophia Alexander Gold Fingerprint Jewellery. Lucille tells us about her journey of living with ulcerative interstitial cystitis.

19 Years Before My Diagnosis

I’ve suffered from what were thought to be recurrent bladder infections since my late teens, often needing several courses of antibiotics in a space of a month. I was both working and attending college at the same time, and was very conscious of being unreliable, so my flares were both a worry and an inconvenience.

If an infection flared while I was actually at work, I’d go and get antibiotics, drink as much water as I could, lie down in the tearoom for a while and then return a few hours later when I started to get some relief.

I adapted, wearing loose clothing, drinking a lot of water and making sure I had always had a bottle of Potassium Citrate solution to hand. These things all helped, but nothing stopped the seemingly regular flares.

At one point, my GP referred me to the local hospital to have scans on my bladder to check that it was emptying properly, but when those scans showed nothing abnormal, I carried on the same as before. The infections just became part of my normal way of life.

Starting a Family, a Business and Recurrent Miscarriage

A few years later. at the age of 22, I gave birth to my first son. I’d had one very early miscarriage, but this was considered normal, albeit unlucky.

After a 6-month maternity leave, I returned to work part-time. The part-time hours, although very welcome, started to take their toll. I always seemed to be rundown and my flares were becoming more frequent, so after a few months, I decided that something had to change.

I handed in my notice and set up a small, independent keepsake business casting baby hands and feet in bronze. It seemed like the perfect solution. I could largely work from home, I loved working with families and babies, and I had a strong background, training and experience in metalwork.

Fast forward a few years and now with 2 small children, it was becoming increasingly obvious that although the work was wonderful, it had a very local reach. Most of my customers were travelling a long way to reach me. Some as far as far as Central London. I was getting a lot of requests to provide home visits and I was increasingly unable to manage the travelling.

Then I started to suffer from recurrent miscarriage and although I was thoroughly investigated, no cause was ever found.  Over 13 years, I had 5 children and 9 miscarriages. I needed to adapt again.

In addition to wanting home visits, clients had also started asking for fingerprint jewellery. This time, it really was perfect. I totally fell in love with working in precious metal and the jewellery could be made remotely, meaning I could carefully pace myself to avoid difficult flares. It was a fine balance and a challenge, but it was doable.

A Turn for the Worse

A few months after the birth of my 5th child, my pain returned with a vengeance. It never went away again.

I didn’t have bad flares anymore, just a constant indescribable pain. Like a bad urine infection, that never went away, day or night.

I was adding sodium citrate crystals to my drinking water, but in such huge quantities that it made me sick. By this point, I had built up a resistance to several antibiotics. At least 5 first-line antibiotics hadn’t worked in years, but this time, nothing worked or brought relief. It was relentless. That was when I realised that the flares were not infections.

After one particular unsuccessful course of antibiotics, a local doctor took a urine sample for testing – and found no infection. I made a phone appointment with an on-call duty doctor. To me, the response was horrifying. No infection, so no antibiotics. It was just bladder pain. It was common and there was nothing to be done. After the initial panic had subsided, I made an appointment with my own family GP who has always been wonderful. As soon as he heard what was going on, he immediately referred me to a Urologist.

Finally, after just over a year of pain and almost 20 years of flares, I had a cystoscopy which diagnosed Chronic Ulcerative Insterstitial Cystitis.

cystitis graphic

So what is Ulcerative Interstitial Cystitis?

Put in the simplest terms, Ulcerative interstitial Cystitis, or IC is an invisible, lifelong chronic condition that affects the lining of the bladder.

There are different stages and different severities which is why patients experience everything from random one-off flares, to constant pain.

One of the biggest problems in the early stages, is misdiagnosis because it presents with exactly the same symptoms as a urine infection. The crucial difference being that no bacteria is present in the urine when tested.

The bladder wall becomes inflamed and red patches can be seen during a cystoscopy. These areas can bleed which explains the presence of blood in patient’s urine. These patches are known as Hunner’s patches, lesions or ulcers (even though they don’t resemble ulcers at all).

Symptoms also widely vary, which again, can make diagnosis difficult, but they most commonly include increased urinary frequency, urgency and in my case, pain. For the patient, Interstitial Cystitis can cause severe limitations. It’s painful, debilitating and disruptive. It’s estimated that over 60% of I.C sufferers find their condition severely impacts their ability to work full time, yet at the same time, it’s not classed as a disability,

At this present time, there is no known cause for I.C, although it has strong links to several autoimmune conditions. There is no cure and there are no standardised treatment. Symptoms are managed with medication.

I take a combination of nerve blockers and pain killers to make me less aware of the pain, but they do not remove it entirely and there are unwelcome side-effects.

Over time, I have found that avoiding certain foods and drinks can help, but again, everyone is different, so what negatively impacts me wouldn’t necessarily impact another sufferer in the same way.

Slow Growth, Quiet Resilience and Learning to Thrive

Over the course of the last two decades, whether I’ve liked it or not, I’ve had to accept that my condition physically slows me down and it has undoubtedly shaped the way my life has turned out. I’ve rebuilt a different kind of life. I’ve had to learn my limits, learn to pace and learn to work with what I’ve got.

My main symptom has always been pain, but pain is exhausting, both physically and mentally. When my pain became permanent, I had to learn to adapt to my new normal quickly. Interstitial cystitis won’t stop me getting where I want to go, I just have to try a little harder than most to get there.

So here are a few things I wish someone had told me couple of decades ago:

Treatment plans and medication

If you are not happy with your diagnosis or treatment plan, you can ask to be seen another doctor, consultant, medical team or hospital. I have literally walked out of a consultant’s office who told me I’d have to “just learn to live with the pain”, phoned my own GP and got an alternative plan put in place. Never ever feel that you are stuck. I’m currently under a team and find having input from several consultants with different specialities absolutely invaluable.

Staying Calm in a Crisis

Chronically ill people are by far, some of the most resilient people I have ever met. There is no good way to find out that you are never going to get better. Being told that this is your new-normal is a lot to accept. You have to be a pretty positive person to bounce back from that, but we do! I have skills I never had before. I‘m now much better able to deal with stress, setbacks and life’s bombshell moments.

Have a Goal That Keeps You Looking Forward

Always having something new to work towards helps me to stay positive. For me, I enjoy learning new skills, training to do new things and building my independent business. I love my work, but of course, goals are uniquely personal to everyone.

Being Realistic

I can achieve almost anything I put my mind to, just at a much slower pace. I’ve have had to accept that bad flare days will happen and I’m not going to be able to work 14 hours a day, 7 days a week like I could 20 years ago. There will be days when the illness wins. I don’t like it, but I’ve come to terms with it. Establishing good daily habits is crucial to keeping a healthy mindset and making steady progress.

I now try to always set myself one or two really short, manageable tasks each day, so that even if the whole day goes awry, or I feel terrible, I still feel like I’ve done something positive and moved forward.

Spoon Theory and Being Organised

Being permanently unwell is tiring and uses up a lot of energy – and I only have a certain amount of energy. I find planning ahead using both apps and physical planners helps to stop me becoming overwhelmed. I make a lot of lists! I prioritise my children and my work. I have to be really honest about what actually needs to be done. What’s urgent and what can be left? I tick off what I can, and I’m always prepared to carry things over.

Work, That Works for Me

For a lot of people, having the ability to work flexibly becomes vital. If you are at the beginning of your chronic illness journey, plan for the future. What will life look like if you can’t continue to do a normal 9-5 job? My company was born out of a “when life gives you lemons” situation, but it’s been a lifeline. It’s allowed me to work around my deteriorating health, whilst caring for a young family and building something I’m really passionate about.

If being self-employed isn’t something you’d like to do, what career moves could you make? What training do you need to look into? Increasingly, there are many jobs that allow you to work from home, more so since recent Covid-19 crisis made it, so the entire world was made to work from home.

Unsolicited Advice

Telling people that you have a chronic illness can be an interesting chances are, you will suddenly find yourself on the receiving end of an unnerving amount of unsolicited advice. Family, friends, random people in hospital waiting rooms. You name it, everyone now is a leading expert on how you should be curing your incurable condition.

Now, don’t get me wrong, it’s lovely that people care and sometimes it can be useful, but a lot of the time, it oversteps a line and becomes invasive. How you deal with unsolicited advice is totally up to you, but personally I’d nip it in the bud really early on because no, neither turmeric or essential oils will cure my I.C. no matter how many times people suggest them.

social network icons on a phone

Comparison-itis

You really can’t compare yourself to anyone else. It’s not a level playing field. It’s so hard when you feel like you’ve been left behind and it often feels like everyone else is progressing faster and achieving more.

Facebook updates and those perfect Instagram squares have a lot to answer for! Social media can sometimes create the illusion of perfect lives but stop a second.

You’re being shown a snapshot of what people want you to see. Chances are, you do it too! You’ve just never thought about it that way before. Do what you can, achieve what you can at your own pace. Focus on you. That’s all that matters.

Chronically Isolating

Being chronically ill can be isolating. I stopped being able to attend conferences and networking events years ago, so I know exactly how difficult it can be to ‘just go and meet people’.I do have good remote working relationships with some incredible people, but for the past few years, I’ve found online membership communities, full of like-minded people, invaluable. I have conversations with people across the globe.

One thing a lot of people don’t realise is that there are some really active chronic illness communities on platforms like Instagram, or if you don’t like the idea of that, use the hashtag search facility to look up things you’re personally interested in.

Slow Living and Self Care

A lot the time we can pretty mean to ourselves. We’re unsympathetic, we give ourselves no time-off and we expect way more than we would from anybody else. Particularly people who are feeling pretty rubbish a lot of the time!

Taking Care of Your Mind

Taking care of your mind, as well as your body shouldn’t be a luxury or an afterthought. Unless burning out or feeling a lot worse is what you’re shooting for, it’s important and necessary.

We now live in a world where we’re always switched on but try your hardest to slow down and set some time aside for yourself at least semi-regularly. It makes the biggest difference. A small amount of time each day is perfect (see point #4), but anything is better than nothing.

See Lucille’s work here: https://sophia-alexander.com/

If you would like to share your story on BBUK’s blog please send an email to: bbuk@disabledliving.co.uk 

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