COVID19 lockdown

“A little pain is a reminder that we’re alive, that we’re mortals” - something I heard when I was younger & it stuck.

But.., constant pain is torture; constantly worrying about the next flare-up or whether this is new ‘normal’? It doesn’t seem to get any better, you just get used to it - learn to live with it and find ways to manage. This can be anything from prayer, hot bath, pain killers, music or time with family. Through this, one still has to manage his/her own mental wellbeing.

This is a glimpse of my life with pain and no diagnosis

It’s approaching 7 years now since what I thought was a UTI turned into years of biopsies, cystoscopies and cocktails of medication which were useful for a while. I don’t write this because I’m hopeless. I write this because I have hope, strength and hopefully people who read this, and are going through the same thing in silence, know and feel that it’s okay to talk. Pretending to be fine is tiring! Mental Wellness is not the fight club, we can talk about it!

I never used to write and there are still parts of my journey I would like to forget.

I have mastered my go to story - how I can describe my experiences without sounding like I’m asking for help or I’m drowning - “I’m currently receiving treatment for chronic inflammation in my bladder/interstitial cystitis/chronic bladder pain” but I still get pity, and follow up questions “how long has it been?” “What’s that?” which leads to me telling whoever is listening a full breakdown of my life 😊

Maybe my interest in medicine from a young age helped me deal with this. My lack of diagnosis is part of my 'uniqueness'. I’ve also been unique before. Growing up I had a keloid scar next to my left ear, which was removed when I was 13. This didn’t bother me much; I was teased but this just helped develop my ‘emotional resilience’. I also accepted the fact that sometimes good people die or anyone can get ill from a young age. However, illness has taken a toll on my faith (Christianity). I was raised in a Christian home, but I wasn’t really concerned with death, the afterlife and the Bible until I lost my grandma in year six. She was a very quiet lady, I didn’t see much of her but I later found out that when I saw more of her, she was already really ill – maybe being quiet and enjoying time with family and friends was her ‘getting on with it’ or being ‘strong’ for herself and the people around her.

During this ordeal I have developed friendships, completed my A levels, a BSc Health and Social care, diploma in Healthcare Management Policy and Research & currently studying MSc Human Factors and Patient Safety. You can see a trend 😊. I’ve always wanted to get involved in health and social care delivery at different levels.

In a way my experience with this condition has been good work experience; I have met good people; mentors, consultants etc. I have been co-ordinating my care for a long time though I hate keeping all my hospital letters - because there’s always a time I need them; for work and assignment extensions. I have experience of negotiating and advocating for my own care; I once wrote an email to PALS, & followed this up with the CCG, when I had become “lost in the system” - something I later found out was very common. I have developed ‘survival instincts’; I’m constantly looking for a way to stay busy - resting feels like a waste of time, “what if my state today is the best I’ll ever feel and I’ll look back and all I did was rest?”. Dealing with the unknown is now natural, though I wasn’t always like this. I used to be very inquisitive, I had to know what was going on everytime but I later took a back seat – accepted that some things are 'unknown'. I guess this has prepared me for the uncertainty during this Coronavirus outbreak - no telling when this will end.

Distance learning has been the usual for me, even when I was an undergraduate. My attendance was never above 50%, because of appointments and off sick days. For this, I’m grateful for lecturers who have really helped me pull through.

At the moment, I experience the pain, but my family/friends are also going through it with me. As care and some support has been suspended (during the COVID19 lockdown), I wonder how some family members or friends are coping with providing that extra support to their friend/loved one that’s not well. I think patient support systems are sometimes forgotten and more credit should be given to people who are managing their health conditions and their experiences to be valued !

You are doing well!