I’m a writer and an artist with rheumatoid arthritis, and now I am happy to say I am a CreakyJoints Blogger. The name Dragon Mother comes from my eldest, now 30, who used to tell people he’d been brought up by a dragon. I was diagnosed with RA about 23 years ago, a year or so after my second son was born.
I had gone back to work when he was six months old, as a chef in a large day care center (a job I took just before I discovered I was pregnant because I was burning out fast in my previous chef job). I had a chorus contract with the local opera company for an opera being performed in a big arts festival, so the schedule was very heavy. I was still breastfeeding, and this child didn’t have even the remotest interest in solid foods.
When I started to struggle, feeling very ill and achy, having difficulties with nappy pins, suddenly finding that the large knife I thought I’d firmly grasped had flown across the work kitchen, and a few dropped trays of food later, I headed to the doctor. Maybe it was more than just being a mother of a nursing baby trying to manage a household, an older child and two jobs… My GP fed me the only anti-inflammatory drugs and painkillers I could safely take while breastfeeding, and gave me a referral to a rheumatologist.
Things got a little bit complicated and drawn out after that because I’ve never shown a positive rheumatoid factor. In fact, my bloods often look normal. Anyway, long story short, he diagnosed me with sero-neg RA, and the chef job came to an end as it was too physical and I was coping less and less. I had to wean my baby – a torturous experience, as neither of us was ready for that – so I could start some more serious drugs, and a new life stretched out ahead of me.
At the time, it looked forbiddingly bleak. My then husband didn’t handle it all that well. Illness wasn’t one of his ‘things’. My first DMARD made me very sick. The strength of the NSAIDs was steadily increased until they, in conjunction with some heavy-duty prescription painkillers, started to give some relief.
Things stabilized more or less. I had a huge full body flare that put me bed for six weeks when my youngest was nearly two. My mother and aunt arrived to manage the house so my husband could manage his shift work job. I got better, many kilos lighter, but gradually got up and about again. Physically, I was kind of managing. Emotionally, not so well, and eventually I had a breakdown. That was the last straw for my marriage, which crumbled at that point, so by the time my youngest was four, I was on my own with him and his older brother, who was not quite eleven.
Very fortunately, my RA was quite slow moving. Over the next eighteen years, it got worse, but very, very slowly. I had ups and downs, flares, losses, pain, constant use of NSAIDs and increasing use of analgesia. But I was so scared of the side effects of the stronger drugs that I put myself into GP care so I wouldn’t have to argue with the specialist all the time.
However, it was bad enough for parenting to become a whole new ball game. My eldest could remember me pre-RA, and struggled initially to deal with a mother who couldn’t always run around with him as much as I had. I got a lot of, “But you’re ALWAYS tired now…”, which was hard to hear. I was. But I couldn’t do much about it. Pain is exhausting. His little brother knew no different. He was a bigger, heavier baby than my eldest, so from the get go, picking him up and carrying him around was harder. He had to learn from a very early age, to get himself places – and he did too, rolling all over the floor from about seven months. He crawled early, and was walking much earlier than my eldest. And walking much MORE, because it wasn’t a simple case of picking him up and carrying him if he got tired and we weren’t using the stroller – he HAD to keep walking.
I made games of picking up in their bedrooms, so that they learned to do it themselves in a fun way. I had them bringing their own clothes to the laundry basket. I put chairs in the kitchen so they could reach the sink and learn to do their own dishes. They took turns helping in the kitchen with dinner prep, and setting the table. It wasn’t all work – we still did lots of play things together. They both remember the wonderful tents we made with sheets and the dining table, full of cushions and rugs, where we could lay and read stories, and they could play out all sorts of fantasies and keep themselves occupied when it was hard for me to get down there.
I became the Dragon Mother because I didn’t have much choice. Because I was a parent with a chronic illness, parenting on my own, my kids had to be contributing members of our household, because I couldn’t do it all on my own, particularly when I was flaring. Keeping them on track sometimes called for some creative and probably quite unorthodox methods. They had to know that any consequences they were warned might happen if they didn’t pull their weight would most definitely happen – or it was a waste of my breath warning them in the first place!
These days, at 30 and almost 24, my sons are very self-sufficient young men capable of running their own households. They can shop and cook, clean, wash, do basic repairs on clothes, and the eldest irons a shirt better than anyone I know (with a little help from being an air force cadet for four years). They have very strongly empathetic personalities. They ‘get’ it, when someone is ill. I don’t see any scarring in them that I could lay at the feet of my RA. Other things perhaps – my eldest declares that I scarred him for life making him eat mushrooms as a small child…but you know what, I’m sure a spot of therapy could fix that!
Unfortunately for me, my RA is back with a vengeance. I hate to think how I’d have coped when the boys were little if it had been as severe as it is now. I’d have needed, even more than I did then, for them to be fully participating members of the household at whatever level they could manage at different ages. That’s so for any sole parent, and it’s certainly so when that parent has a disability or a chronic illness, and it still stands if there’s a supportive partner there.
Now, it’s just my partner and I – his son has up and left home now too. Some days I manage to achieve quite a lot and some days, not much at all. I’m learning to adjust to a disease that dictates terms much more brutally than it ever has before. It’s hard and it’s incredibly frustrating. I don’t miss the job I had that I had to leave, but I miss being ABLE to work full time. I’m still trying to work out best how to create work for myself that’s enjoyable, challenging and doable.
I’m a writer and an artist so in theory, I can work from home. In practice, I still have to work out how best to balance different activities so that they’re sustainable. On the days that the headache that inevitably follows my biologic shot is particularly bad, I can’t write. I can’t keep enough focus to write. If I’m flaring badly, I can’t work at an easel. When the fatigue goes crazy, I can’t do anything much. It’s a whole new chapter, that on good days, I tell myself is a big new adventure. I look forward to sharing it with you.