Last August partner Jane and I enjoyed a relaxing holiday in a Croatian resort near the town of Poreč. The weather was hot, hotel excellent and scenery stunning. After a summer of shift work for me and an arduous if exciting holiday earlier in the year travelling around northern India we felt we owed it to each other to slob out for a week reading and eating ice cream. The only slight dampener on an otherwise great week was Jane complaining over a toe that was hurting her.
We laughed it off as a touch of gout due to the plentiful supply of free wine with our meals, or maybe, as I joked while we celebrated her birthday on the Tuesday, a touch of old-age arthritis. Arriving back in Blighty suitably refreshed Jane did the right thing by seeing her GP who in turn sent her for tests. It turned out it wasn’t gout, or osteoarthritis but something potentially nastier. The bloods revealed a high reading for rheumatoid factor. Jane was going to live the rest of her life battling rheumatoid arthritis.
Like many people I’ve spoken with since I had no idea what RA is (beyond thinking it a popular Scouse expression denoting the user feels hard done by). A quick bit of research and I learned while osteoarthritis is a wear and tear disease related to ageing and mechanical trauma, rheumatoid (there’s a growing movement towards dropping the arthritis) is an auto immune disease that as well as degrading skeletal joints can also affect eyes, heart and lungs. Similar to lupus, Crohn’s Disease and Guillain Barré syndrome the body recognises its own tissue as pathogens and attacks them.
My initial reaction on receiving the news was fear. Selfishly I considered how I would cope with Jane’s emotional needs and her increased and increasing physical difficulties. Most worrying was my own revulsion toward disability although a more subtle concern (and with more cause as it has turned out) was the disease would over-ride all other considerations within our relationship. Aware of my subconscious belief that to be strong is to deal with something, Jane soon supported me by hiding the full extent of her symptoms – a reaction that owed much to years of dealing with and comparing herself against her emotionally erratic valetudinarian mother. Fortunately over the intervening time, I’ve regained my senses and attempted to persuade her that if she’s feeling sorry for herself it really is ok to express it, especially to me.
The deterioration in Jane’s condition over the past 10 months has been terrifying – with her hands suffering most. Now she can find it hard to grip, particularly in the morning. I attempt every support although sometimes this is difficult. When for instance she rang and told me how she’d sat on the side of the bath in tears because she couldn’t wash her hair, once alone I was weeping my own tears – mainly of fury at the injustice of it all. Fortunately a right knee so swollen it was severely restricting her mobility has calmed down following an uncomfortable procedure drawing fluid out of the knee before firing a corticosteroid back in. Not so happily, support groups on the internet have provided little help, with Jane unready and/or unwilling to read other people’s horror stories.
All of life involves learning and the role I’ve slipped into is that of trying to maintain an evenness of emotional response. That means attempting to prevent the lows becoming unbearable but also the highs mountainous. And there have been plenty of peaks, even if some of them are relative. An early boost was a very good friend of Jane’s meeting socially with an experienced nurse working on a clinical trial unit at the nearest hospital. Through the contact Jane signed up for a drug trial and was able to temporarily avoid methotrexate, the standard treatment for RA. Known as a DMARD (disease-modifying antirheumatic drug) this drug is used in stronger doses for chemotherapy and is obviously best avoided if possible. Although a double blind trial we know Jane is taking fostamatinib due to some small but distinct side-effects.
As an example of the fluctuating nature of life these days the biggest low so far was immediately followed by a high. The care Jane receives on the trial is second to none. And because the disease can affect the lungs one of the myriad tests she took was a chest X-Ray. Checked by an outside agency the results immediately came back “suspected interstitial lung disease”. Following a very distressed phone call at home a quick tap into Google and I was horrified to read an article claiming the main treatment for ILD is transplant. My mum, dad and I rushed down to London from Suffolk on a Tuesday to provide what support we could.
We need not have bothered. Another even more tearful phone call the next day revealed the agency had cocked up their analysis. Jane’s team had pored over the scans and could find nothing at all untoward. I couldn’t be angry about the situation, and do understand why it’s always better to give a positive reading when there is nothing wrong rather than the other way around. As with many of these moments (the joy of finding your mislaid car keys can sometimes outweigh the frustration at losing them in the first place) the emotional positives emerge triumphant. After further research as well as some good advice from my nurse sister I later discovered ILD can be not much worse than the asthma I’ve suffered for all of my life and is in fact a generic term to cover many diseases.
And I suppose that is the point; my asthma isn’t something that bothers me any more than being short-sighted or suffering from migraines and so on. It’s quite likely Jane will have massive remissions between flare-ups and cope quite well. She still has employment at the same job in front of a keyboard and can continue walking both to work and for leisure. Most important however, is the growing realisation of just how much love and support we have around us. Several people have quietly come to me and expressed their concern I might be suffering from a lack of support – but as kind as their words are (and they are massively appreciated) I don’t feel like I need much at all. It’s Jane’s disease. As I’ve said in previous blogs, Jane taught me the value of kindness – now I can repay her.