Hello Failure - It's Me Again
Last updated: October 2019
I used to be afraid of failure. I don't look forward to it now but I do know that if I want to move forwards then I need to embrace failures as lessons learned. Since taking control of my psoriasis care around the age of seventeen I have tried and failed a lot. All of those failures were necessary.
Some of those failures were not obvious failures - and I needed to mildly fail several times before I acknowledged that the treatment just was not working for me in the life that I needed to live.
Post steroid flare and medical advice
I respond really well to Dovobet. A mixture of the potent topical steroid betamethasone and the Vitamin D derivative Dovonex. I am prone to getting steroid kickback- where my psoriasis clears quickly, but on ceasing treatment, psoriasis returns much worse than before. There are treatment protocols that can reduce the risk of this post-steroid flare. Instead of going to the doctor and learning about them I dragged 6-year-old tubes from the cupboard to treat myself when I felt desperate enough and accepted the flare.
I have since learned to use Dovonex as a tool for weaning off stronger steroids and learned about the advancements in dispersal technologies such as those used in Enstilar foam.So remember, even if you're a psoriasis veteran - treatment protocols change- its worth having a review relatively frequently.
Trying out phototherapy
The first time I experienced U.V treatment was as a teenager. I was taken from school to a hospital almost an hour away, soaked in a bath because I was too young for the sun sensitizing tablets, then placed in a U.V machine, re-dressed and shipped back to school with glasses that looked like I'd raided the science department for specs. It took almost half a day and made me stand out at school even more. This was my experience with PUVA.
I cleared though, mostly, but 5 weeks later the spots were returning like raindrops pattering on a pool.
The second time I tried nb (narrowband) U.V.B which I much preferred, but now as an employee - I had to take three mornings a week off work to go to the hospital. Within 5 weeks the spots were returning.
The next time I needed U.V. I refused to go. Three times a week for months is not worth five weeks of clearance in my opinion. U.V works for me, but not in this conventional prescriptive format.
Making light therapy work with my schedule and life
From this failure, I learned that I need U.V treatment in a different way, one that worked more in line with my life.
This has manifested itself in my life in two ways:
- I find taking a week off work to go on holiday works much better - and instead of increasing my stress- reduces it. I have even been signed off work to go on holiday for a week to clear my skin. It's incredible how accommodating people are when you are open and honest (particularly if they have seen you experience a flare before). Most employers who are human would rather you were off work for 5 working days on a predictable date - than multiple random days which they cannot plan for.
- Now I am self-employed- calculating the cost of hours lost traveling and waiting at the hospital meant that buying a machine was more cost-effective. (my husband despises my nb U.V.B machine as it lives in our bedroom but I LOVE it).
The solution I choose depends on my husband's workload, my finances, and my children's schedules. I needed to fail a few times to find a more out of the box solution that works for me.
Failing at being a smart ass
So for me - topical steroids and sunshine are great in the short term. The thing is, at the naive age of twenty and freshly single, I decided that I wanted to look amazing at the Graduation Ball. To be able to stand confidently in front of my ex, who was in my group of friends (and therefore unavoidable in the leaver's photos).
With a holiday booked for two weeks before the big day, I bought a low back dress. To prevent the inevitable brown skin with white patches (you know the ones where psoriasis clears but the skin around is tanned from the sun), I treated my skin with steroids before and during the holiday so I would get an even tan and pretend I always have glorious skin. Genius - right?
No. Not genius. Turns out - steroid kickback happens anyway.
Human Biology: 1
Smart Ass Me: 0
Speak to your doctor if you need help clearing your psoriasis. You can't outsmart your biochemistry.
The autoimmune protocol
I have been successfully experimenting with my diet. I have several trigger foods and was excited to try the Auto Immune protocol when it first appeared on the scene as the book was very well researched with ample academic evidence to dispel my natural skepticism.
The mistake I made here was being sold before I started. I read so many testimonials for people with autoimmune conditions that were so much more complicated than mine, whose lives had been transformed. You know the type I’m talking about.
I say mistake but relatively quickly I started feeling faint. I stopped strenuous exercise as I felt too ill and reintroduced rice to help me stop the woozy feeling. As the weeks went on I kept reading the book, further convincing myself that this was temporary, that soon I would wake up more energetic, with glowing clear skin.
That day didn't happen. I ended up underweight, and weak. My acupuncturist told me to visit my doctor because in the weeks since I had last seen her, my health had plummeted. I needed someone else to confirm what I knew deep down inside.
It took months to get back to where I started. The lessons I learned here were two-fold:
- First- don't get caught up in everyone else's hype. We are all different, just because something works for someone else doesn't mean it will work for you.
- Second: Trust yourself. My body told me very early on that this was not working - but I chose to ignore all of those messages. The dizziness, the paleness, the weight loss, and the encroaching feelings of sadness that wrapped around my soul when I woke up on a morning.
How many times do you need to fail at something before you accept it isn't working. Every couple of months I decide I am going to try meditation again. Unsurprisingly, I fail. Why? Well, everything is still the same. The same reasons I failed the first time, are here as I fail on attempt 23. Accepting failure means looking for an alternative solution.
As a busy working mum with young children, quiet time in the morning didn't work. I kept getting up earlier but then so did the kids. I had to draw the line at 5:30 am! Evenings were recommended, so I tried that, I tried bedtime routines that included using apps, and included mantras and I even tried a journaling style meditation. All worked for a few days and then failed.
Then I found a totally out of the box solution.
Using art to cope
I love being creative but never feel I have time. If you take meditation back to its core - it's living in the present and calming the mind. If you have ever gone to a pottery painting place you will know that time stands still as you get lost in childish play. If you don't have kids. If you do go with kids it's an enjoyable but noisy cash guzzling activity- be prepared to be interrupted repeatedly if your children are young. I am now writing poetry (badly) and taking time to find beautiful things to photograph. This works for me much, much better.
I love cyclosporin - it helped me realize I was more than my psoriasis back in 2008 and for that, I will be eternally grateful. The second time I took it my liver enzymes escalated and I had to stop. I failed at cyclosporin.
The lesson here is that one solution doesn't always work. That it is important to talk to the doctor when you get the prescription to find out what happens if that treatment option fails. It makes it much easier to accept the truth if you know what is going to happen next. It also shows that even when your young, your body can incur damage -so make sure you follow up with the tests you need.
I knew I wanted to talk to people about psoriasis - experts (because where I live they are in short supply) and people who have lived through this too- because in 30 years of living with psoriasis I had no psoriasis friends.
The first episode was awful. I was so so nervous. I interviewed a naturopath and she told me some really interesting things about psoriasis and digestion. I over-edited the conversation, I hated the sound of my voice and I had got into my head that no one would listen for more than 30 minutes and so cut out content, even if it was good. It’s still on iTunes but I cannot bring myself to listen to it.
I hit 15,000 downloads this week. I love the podcast - its what I wish I had when I was growing up with the condition. I love that next week I am interviewing a Rheumatologist who specializes in alternative options for early-stage psoriatic arthritis. I wouldn't have got here without fail. I am now on episode 25. The name of the podcast has changed, the website, the intro music, episode frequency...so much!
So what's next for you?
We can only fail if we try new things. If you're not happy then go and speak to your doctor and see what you can try next. Failures can be like hitting a dead end - its frustrating when it happens but you turn around and it makes it more likely that the next road you take will be the right one.
What have you failed at? What did you learn?
Are you recently diagnosed with psoriasis?