Share Your Story – Tara’s Story
Tara has agreed to share her story with the Bladder and Bowel Community. Tara has a combination of rare conditions, which have led to her experiencing painful bladder symptoms.
In April 2012, Tara woke up one morning with excruciating pain in her left foot that never went away. After extensive tests, Tara was diagnosed with Complex Regional Pain Syndrome. CRPS is a condition that is usually triggered by a trauma such as surgery, illness or injury but in Tara’s case it started out the blue. Worse news was yet to come after she was diagnosed with the more severe ‘Type 2 CRPS’, which causes nerve damage as well as pain.
Over the years, Tara’s condition has continued to deteriorate and the CRPS has spread to her left leg, back, left shoulder blade, left collarbone, left arm and hand and has now attacked her heart and bladder. Tara has also been diagnosed with hypothyroidism, POTS (Postural Orthostatic Tachycardia Syndrome), arthritis and is being investigated for Interstitial Cystitis and Urethral Pain Syndrome.
Interstitial Cystitis and Urethral Pain Syndrome both cause debilitating pain in the bladder and urethra. The pain mimics the symptoms of a urinary tract infections and cause a strong burning sensation and pain when passing urine. Unlike a UTI, antibiotics do not work and the symptoms do not alleviate. Bladder washing treatments can help in some cases, but there is no cure.
How do your illnesses affect your day-to-day life?
My illnesses affect my day-to-day life a lot. I can’t do anything for myself, not even making sure that I eat – I have stomach problems, so I have no appetite. My mum became my full time carer in 2016. She has to help me bathe, help me get dressed and take me to appointments. My days consist of getting up in the afternoon because I’ve been up all night and getting downstairs to the sofa where I stay for the day, only moving to use the bathroom with help from my mum up and down the stairs.
Do your family/friends help you with your illnesses?
The only family I have is my mum and brother. Who are the most supportive people ever. I’ve also met some amazing friends who I do consider family through my diseases. I would be lost without them. For anyone going through health problems the only people who understand some of what you’re going through is others who are going through health struggles themselves. I do have three amazing ‘fur babies’ who never leave my side and who always know when to make me laugh when I am having a rough day.
What treatments have you tried to help with your bladder pain?
The only thing I’ve tried for my bladder pain is potassium citrate, I’ve not been prescribed anything for it until December 2018, when I was finally diagnosed with Urethral Pain Syndrome. Other than that, I was on permanent antibiotics.
Can your conditions be cured or just managed?
Unfortunately none of my diseases have cures and none of them are currently managed. They all have a long list of symptoms which I struggle with daily. My main diagnosis CRPS will never be pushed into remission now because it’s far too gone for me. I’m grateful for the low pain remission I got from late 2013 to 2015.
Do you have any tips on how to manage your day-to-day pain?
The only thing I do to help me get through my day is distraction. It doesn’t take my pain away at all but it helps keep my mind focused. I create awareness artwork, I do my own nail art and I have a DS which I play on, as I can lay down to play when my back is bad.During the night, when I’m in bed I watch videos on YouTube.
Do the doctors thinks that any of you conditions are linked to each other?
Yes, my pain management doctor believes that the diseases I’ve been diagnosed with since 2016 are all linked to each other. Once you have one autoimmune disease you’re extremely likely to get more, although all mine happened very quickly because my nervous system went into overload after having the spinal cord stimulator implanted which basically ruined my life.
What does the future hold for you and your illnesses?
At this moment in time, I don’t have a future. I’ve been told I’ll never get my old life back and will never work again because of my profession and what it involves. Being in a wheelchair which I can’t self propel, as well as having severe anxiety limits me a lot. For right now I’m just taking each day one day at a time.