Victoria, 42 (UK)
Q: Tell us about you. what health conditions do you live with and how have they affected you?
A: My name is Victoria (but people also call me Tori!), I'm 42 years old, and I live in the UK. I've been chronically ill for the past 7 years, my story is long and complex but I will do my best to try and explain.
My journey started after I went to my doctor and had blood tests.
I remember feeling so tired - beyond tiredness, pure exhaustion - at the time. Some days I found myself struggling to even get myself out of bed or off the sofa. But, as so many people do, I did my best to soldier on.
I had a full life, I had just started a new job, I was taking care of my animals (who are my entire world!), and was living a very active life.
I didn’t believe anything could be seriously wrong, I thought maybe I was just burnt out. But it eventually came to a point where it was something I couldn’t ignore anymore and I had to go to my GP.
My blood results came back and, to my horror, I was told that I may have leukemia. I was referred to a haematologist who ordered a CT Scan, which showed a mass and shadows around my kidney. I was told then I had suspected kidney cancer. I was devastated.
A few weeks later things took a turn for the worst. I was rushed into A&E where they told me I had sepsis (a life threatening blood infection), and I was admitted into ICU. Eventually they discovered that the mass they thought was a tumour was a renal abscess (as well as staghorn calculus (kidney stones). I was rushed to surgery where they fitted a nephrostomy tube to drain the abscess.
It is frightening to look back and think I almost didn’t make it.
I spent the next year of my life in the hospital as I kept getting infections - repeated bouts of sepsis, constant UTIs, and I also contracted 2 hospital bugs called C. Diff. I was in constant pain.
Once they had drained the abscess, I had a Renogram which showed that my kidney function was at 0%. I was told I would need to have my kidney removed. In May 2017 I underwent a radical nephrectomy, but it didn’t go as planned. The surgeon opened me up to discover that my kidney had attached itself to my liver and bowel. I ended up being under for 8 hours, instead of 4 and they weren’t sure if I would make it through the surgery.
Since the surgery, my health continued to decline and consequently I have been diagnosed with several chronic conditions, including severe neuropathic nerve pain, neurogenic bladder, interstitial cystitis, and fibromyalgia. My mobility is poor and I am now registered as disabled. I have also been diagnosed with PTSD, anxiety and depression.
Now I am trying to adjust to living with these limiting conditions, on top of processing and trying to recover from everything I have already been through.
So far, It's been a constant battle to get a diagnosis and treatment plan. I've had 17 operations and procedures and I'm currently waiting for 3 more surgeries to fix my bladder damage and to have spinal cord stimulation surgery.
Learn more about the important diagnosis's, surgeries and procedures in Victoria's story:
Sepsis
Information provided by the NHS UK Website
Sepsis is a life-threatening reaction to an infection.
It happens when your immune system overreacts to an infection and starts to damage your body's own tissues and organs. Sepsis is sometimes called septicaemia or blood poisoning.
Renal Abscess
Information provided by NHS Inform Scots Website
A kidney abscess is a rare, but serious, complication of a kidney infection, where pus develops inside the tissue of the kidney.
Kidney abscesses are potentially serious because the bacteria inside the abscess can spread to other parts of your body, such as your bloodstream or lungs, and can be fatal.
Smaller abscesses can usually be treated with antibiotics through a drip. Surgery is usually required for larger abscesses. This involves draining the pus out of the abscess using a needle that's inserted into the kidney.
Staghorn Calculus (Kidney Stones)
Information provided by the NHS UK Leeds Teaching Hospital Website
Staghorn stones are large branching stones and the largest type of the struvite kidney stones. They are more common in women based because of their association with Urinary Infections. They are very challenging to treat.
Radical Nephrectomy Surgery
Information provided by the National Kidney Foundation website
Radical nephrectomy involves removing the entire kidney, along with a section of the tube leading to the bladder (ureter), the gland that sits atop the kidney (adrenal gland), and the fatty tissue surrounding the kidney.
Find Out more about Victoria's chronic conditions by clicking the links below:
Chronic Neuropathic Pain
Information provided by the NHS UK Cumbria website
Neuropathic pain is a type of persistent (or chronic) pain caused by problems with the nervous system.
This is the part of your body that helps you feel touch, pressure, pain, temperature, position, movement, and vibration. This can be in your muscles, joints, skin, and the layers of tissue just beneath your skin (fascia).
Neurogenic Bladder
Information provided by the NHS UK webiste
Neurogenic bladder is a condition where the nerves that control the bladder are damaged. This prevents a person emptying their bladder fully.
It can be caused by an injury to the nerves in the spine or a condition that damages the nervous system.
Interstitial Cystitis
Information provided by the NHS UK website
Interstitial Cystitis (also known as Bladder Pain Syndrome) is a poorly understood condition where you have pelvic pain and problems urinating.
The main symptoms can include intense pelvic pain, sudden strong urges to urinate, or needing to urinate more than usual.
Fibromyalgia
Information provided by the NHS UK website
Fibromyalgia, also called fibromyalgia syndrome, is a long-term condition that causes pain all over the body.
As well as widespread pain, other symptoms of fibromyalgia include increased sensitivity to pain, muscle stiffness, and difficulty getting to sleep or staying asleep, which can make you feel very tired (fatigue).
Q: What has been your biggest challenge, or the hardest thing you've had to come to terms with, since your diagnosis?
A: I am grieving for my old life and the person I once was.
It feels as though I lost everything almost overnight - I was a very active person and I loved working with horses, I also had my own horse who I rode daily, and I was always at the gym.
I had such a full and happy life and losing that has been so tough, both physically and mentally.
Another challenge I’ve faced whilst learning to live with chronic conditions, is having to deal with judgement from outsiders. It was a shock - not only do I have to suffer with chronic pain and trauma, but I also have to deal with other people's ignorance and stigma. I often find myself having to justify myself and answer many questions - “what is wrong with you?”, “why do you use that walking stick?”, “you don’t look sick, why are you using a walker?”.
Comments like these really hurt me, especially ones about the aids I rely on as I already feel insecure that I have to use them. I don’t mind if people are genuinely curious, but most of the time it comes off as very accusing.
I am constantly worrying about what other people are thinking about me.
Q: Despite your challenges, what keeps you going and brings you joy on difficult days?
A: My family, friends, our family pets and my racehorse Norman Kindu!
Also, I have found so much joy and comfort in setting up my chronic illness account on Instagram. I started sharing my story and being honest about my experience of living with chronic illness at the end of 2022. I wanted to help others understand hidden disabilities and also help other warriors by supporting them.
I discovered a community where there is no hate, just a lot of love, support and care for one another.
I love connecting with other people who are in a similar situation to me, it makes me feel a little less lonely. Also having a space where I can vent and be able to share my own journey has lifted a heavy weight off my shoulders!
Q: What is an achievement you're most proud of since being diagnosed?
A: Pushing through the pain and trauma during my radical nephrectomy and recovery.
Doctors struggled to help me get my pain under control after all the trauma from the 8 hr surgery. The pain was absolutely horrendous and there were days I didn’t think I’d make it through. I don’t think I’ll ever be able to put into words the extent of everything I had to go through and what it did to me physically and mentally.
But despite it all, I am still here. I can't believe how strong I was then and still am today. I really am a warrior and I will never give up fighting.
Q5 - If you could write a letter of hope and encouragement to your past self, what do you wish you could say? What would you want to tell her?
Dear me,
You are much stronger than you think you are.
It’s okay to grieve for the life you lost - your life changed overnight and all of the things you had planned to do with your life didn't work out the way you hoped. It's scary, it's tough and it’s unfair…but you will be okay.
After everything you’ve been through, I know now that you can get through anything!
Trust and believe in yourself. Please don’t give up, you're a fighter and I’m so proud of you.
Love, Tori x