19 months after a traumatic response to arthritis medication led to PTSD (which I wrote about briefly last year), I finally moved back into my bedroom. The space where at 2.30am I awoke experiencing severe broncho-spasms and dramatic hallucinations. Breathing felt impossible and I was so scared that I thought ‘this is it’. Dogs’ faces and human teeth circled round in black and white when my eyes were closed. When I opened them, the horrible images vanished, so I quickly realised they weren’t real. But the breathing difficulties were very real and utterly terrifying. I ended up spending 2 days in hospital which allowed enough time for the drug to leave my system. A while later I was diagnosed with Post-Traumatic Stress Disorder and started cognitive behavioural therapy which included ‘exposure therapy’.
One aspect of Exposure Therapy involved listening to a recording of my voice recounting the events of that night again and again to try and make sense of each stage (guided by the therapist each time). Exposure therapy was difficult but revisiting that night helped me to see what happened in a different way. When I thought I was dying, I was actually experiencing a severe (and luckily very rare) reaction to an RD drug.The CBT has been effective to a certain extent (i.e. I am not having panic attacks any more – I was having them several times a week at the start). However, I had been unable to move back into the bedroom until this week.
I decided to create new memories of the bedroom to separate it from ‘that night’. I have rearranged the furniture so the space looks and feels different. But actually moving back in and trying to sleep was harder than I’d anticipated. I’m still finding it hard to relax and to get to sleep. My therapist said that this was due to ‘Situationally Accessible Memories’ that were triggered by being back in the environment where the severe reaction to medication happened. Then because I feel anxious and have chest pain recalling the memories of that night, I feel I must be in danger. He pointed out just because it feels bad, doesn’t mean it is bad. So my chest pain is likely to be musculoskeletal pain associated with my rheumatoid disease and/or Ehlers-Danlos Syndrome than my heart (which has been checked recently). The most useful piece of advice he gave me was ‘Don’t believe everything you think’ which is spot-on. I’ve still got some way to go but moving back into the bedroom after sleeping in the study for 19 months is a huge milestone.
Not long ago, self-injecting Enbrel was out of the question. I was traumatised by previous bad experiences on four other drugs, including hallucinations and broncho-spasms. 18 months after that night, I finally self-injected today! I’ve been building up to this for some time, as this was the 12th dose, and I started the medication at the end of January. To begin with, my specialist nurse administered the drug. Then, over several weeks, I learnt to remove the grey lid (a tricky manoeuvre with swollen fingers!), push out the air bubble, and inject my thigh at a 45 degree angle. Today was the first time that I’d managed to do the whole procedure – even pushing the plunger and removing the syringe. It wasn’t as bad as I thought it would be! It stung a bit, but not massively. I’ve celebrated by having a bar of chocolate (as I don’t drink anymore since being on anti-TNF drugs). I feel an amazing sense of achievement as well as relief. I’ll probably self-inject in front of the nurse for a bit longer before I do it at home. This feels like a real milestone and I look forward to it getting easier with practice.
I’ve also signed up for the Super Hero 5km Run on Sunday 18th Mary at Regent’s Park London (except in my case it will be a walk, raising funds for Arthritis Research UK. Why AR UK? Because they do vital work to find new treatments to tackle rheumatoid (and osteo) arthritis. Without their research, I wouldn’t be on a biologic drug (Enbrel) that will (hopefully) a) give me a better quality of life, with less fatigue, joint stiffness and swelling and b) lead to drug-induced remission. Without them, I wouldn’t have access to valuable information about RA (both the condition and full range of treatments available), helping to demystify everything.
Why the Super Hero Run? (or as I’ll do, walk). I originally wanted to do the Santa 5km Run/Walk in December, but didn’t go ahead for various reasons (the cold, dark weather combined with a flare). Having (temporarily) given up the ukulele, I was looking for a new challenge. I realise that in some ways it’s not a great idea to subject my joints to this kind of physical endurance test but I wanted to give something back. I couldn’t have asked for a better rheumatology nurse and consultant and would be lost without them. Apart from raising money for arthritis research, I’d like to highlight that people of all ages have RA. And wearing the Super Hero costume should bring an element of fun to the whole event. I’ve invested in a pedometer that tells me the distance I’ve walked each day. So far today (bearing in mind it’s only 15.20pm) I’ve only walked 3600 steps or 0.57 miles. That’s a long way from the target. Still, there are 8 and a half weeks to go so plenty of time to reach 5km in one day. If I seem relaxed about this, it’s because it’s not a competition, it’s about seeing what I can achieve, despite having erosive RA that isn’t under control yet. No matter how long it takes, I’m determined to reach that finish line!