Due to intense brain fog, all my thoughts have been grounded until further notice!
A meme that resonated at the time and made me smile.
Following a period of significant neuropathic pain, I had succumbed to taking the drugs that had been prescribed for me, including Diazepam (Valium) and Tramadol. Day 1 of my 5-day prescription was all about reflection as I contemplated the irony of my situation. My unwillingness to take medication to improve my pain was in stark contrast to my acceptance of alcohol 🍷 💊💊
Having spent most of the 90’s and 2000’s working in the City I had learnt the art of drinking very well. Initially, I sold trading and risk management software which meant I was right in the heart of the banking world. I loved my job and I had the pleasure of working for and with some wonderful, super intelligent people. I had disliked school, but I learnt so much during those City days. I will be forever grateful to the people who believed in me and invested their time helping me to develop my skills and achieve my ambitions.
The City has changed now but in the 90’s the drinking culture was thought to strengthen professional relationships. I remember days when myself and colleagues left the office for a client lunch meeting which continued throughout the afternoon and ended up with me catching the last train home. Whilst I was compos mentis, counting alcohol units had not been on our meeting agenda. We didn’t have mobile phones until the mid to late 90’s and we certainly didn’t have access to email. We had no idea what was going on outside of our get together; we talked, we listened, we laughed all without the distraction of our email, Instagram, Twitter or Facebook. There were no photos of our get together either which was probably just as well!
Acknowledging my liking of alcohol, Dr Google still seemed to favour pointing out the dangers of my concoction of drugs. The google search revealed that taking Diazepam with Tramadol can cause dangerous effects. These can include severe drowsiness, slowed breathing, COMA, and DEATH. I found the “coma” and “death” warnings the most disturbing. It also went on to say that if your doctor prescribes Diazepam with Tramadol, they will monitor you closely and I wasn’t seeing much monitoring going on.
The main observation I had on day 1 was an improvement in my pain level. I also felt a bit different, I can’t really explain why, perhaps more relaxed and carefree. There’s a good deal of research to suggest that “people are not addicted to alcohol or drugs, they are addicted to escaping reality” and this makes complete sense to me as the drugs were allowing me to escape from the reality of my pain.
I also concluded that my brain wasn’t as sharp. I’m sure my analysis of myself was a bit OTT but I was attempting to carry on working and I noticed I made more mistakes in both written and verbal communication. I haven’t had many sick days in my career, I tend to rock up whatever as work has always been a good distraction, especially when you have an overactive mind like mine.
Getting back to the subject of alcohol, I knew you shouldn’t drink while taking Diazepam but the advisory for Tramadol is much more serious. My prescription came with an alcohol warning and Dr Google also informed me that drinking alcohol while taking Tramadol increases the risk that you will experience serious, life-threatening side effects. Now, whilst I like a glass of wine, perhaps not as much now as in my City days, I reasoned that on this occasion, the risk was too great.
Day 2 was interesting. My husband Jamie had organised a fund-raising dinner for the cricket club. A guest speaker had also been arranged. This person was well known and involved in the England cricket set-up; he was arriving at our house before the dinner for cup of tea and a chat with Jamie about format of the evening ahead.
By now I had developed a shakiness and my hands trembled quite noticeably. I was taking so many drugs at different times of the day that Jamie had written it down for me including all timings and doses. I set alarms on my phone so I remembered to take them.
I don’t think our guest noticed anything untoward as I mostly kept out of the way. The only error I made was to leave my long list of drugs on the table and I had to discreetly remove it. Had I sat where our guest was sat, I would have been able to read every word! I didn’t carry the cups of tea either as that would have added further evidence to my drug habit.
I don’t remember much about the dinner itself even though no alcohol passed my lips. In fact, I remembered much more from my alcohol fuelled afternoons and evenings in the City which was somewhat worrying. My friend commented that instead of turning my head to talk to people, I turned my whole body which looked a bit strange, but I put that down to the pain in my neck and back. Other than that, the dinner passed without incident.
On Day 3 we drove to Cornwall, we thought some walking and fresh air might help. I’m not a great passenger as I also drive from my passenger seat! My memory of this journey was reclining my front seat and watching the world go by without making any comment whatsoever on other road users.
It was the weekend and I was looking forward to some down time. Jamie and I love Cornwall and stay in the same village on the North Coast every time. We also frequent a bar/restaurant, which is notorious for fun, drink fuelled evenings so visiting this bar and not drinking alcohol was going to be a challenge.
As I sat with my elderflower water, I recalled a very funny evening on our previous visit. Solo artists and bands perform regularly in the bar and on this particular night a fairly well-known artist was booked. He is even more well-known now due a recent appearance on BBC question time and his subsequent Twitter interaction about “woke”. Anyway, during his performance (and, in fact, leading up to his performance) everyone had consumed so many shots no one could remember the words, not even the artist himself and it culminated in a mass sing-along with his backing musician leading the way. Needless to say, his car was still parked on the roundabout outside the bar at 11am the next morning.
Days 4 and 5 passed in a bit of a haze and the term “brain fog” was a good way to describe my state of mind.
Scientists believe there may be a link between chronic inflammation and the cognitive impairment that people refer to as brain fog. There is evidence to suggest that with ankylosing spondylitis, when immune flares release these things called cytokines, they send signals in the brain that get in the way of its normal functioning which can feel like “brain fog”. I haven’t experienced this with the disease itself, but I certainly felt my brain wasn’t functioning well under the influence of my drugs.
I was pleased when my 5 days came to an end and I was unscathed and, contrary to Dr Google, I was still alive. I came off the Diazepam and remained on Tramadol for a further 2 weeks by which time all my neuropathic pain and muscle spasms had gone and I felt normal again. I never want to experience pain like that ever again, but I now know how to manage it and I have a process in place for any reoccurrence. Getting back to the Nurse at the A&E, she was absolutely correct, when you live with an autoimmune disease, pain management is a crucial part of the learning process and getting it right will make a difference to your quality of life.
This had been the 1st setback since my diagnosis and my next blog will cover the 2nd, which is, by far the most serious.
Thank you for reading and sharing my story. Don’t forget to take the (prescribed) drugs, they do work!
Until next time x
Living-with-autoimmune 
I love your blogs Andrea. You are an inspiration.
Cathy. X
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Thank you so much Cathy xxx
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