How Has RA Impacted Being a Mom?

Which little everyday things are made more difficult by RA?

Picking up and holding, breast feeding, nappy changing, dressing, hand holding, wrestling and pulling that ALL children do for a few years to their parents hands during dressing or playing is just agony but you allow it and wince through pain because yanking your hands away from them would be hurtful and confusing; so much comfort and bonding comes through the secure holding of their little hands.

Putting babies into prams and car seats is also agony for arthritic wrists and fingers; the weight baring on swollen tender knuckles weak flimsy wrists...it's easier and less of an ordeal for me to walk to the shops on both my arthritic ankles and back again than it is to pick up, place, wrestle with, and buckle my two toddlers into their car seats then unbuckle and pry them out again at the shop. Then into car again and out again at home  Often at their objection so they are flailing around like spider monkeys on steroids. This alone contributes to my daily hand pain spike most days. But I have to drive anyway because I can't possibly carry home the groceries with my hands; and when I do sling 5 very heavy bags on my elbows, the weight it puts on my ankles creates a whole other pain spike to deal with.

What has RA taught you about motherhood?

Mothers are Warriors who truly put their children's needs first despite debilitating pain. It has taught me what true fear is with the only thought that could possibly scare me in this entire universe being the moments my mind lingers on a fat looking knuckle on my 2 year old or if my 3 year old stumbles and limps a little my blood goes cold momentarily facing the possibility that they might ever have to endure this disease.

On a lighter note, RA has taught me the fast way to get things done, the least physically impacting way to do just about any given task from moving furniture around to changing a nappy single handed... Being a mother with RA has suddenly taught me self compassion which I never had since being diagnosed at 11. I genuinely believed I was just a sluggish lazy girl who didn't like sport and wasn't overly social in the daytime hours. I now realise as a kid, teen, young adult, I endured the type of pain that others might feel acutely for a few hours to a week or so and suffer terribly during that time; and likely never feel that pain in that one spot ever again after it's healed, but my pain never went away; it ebbed and flowed and flared and my activities and personality. My likes and dislikes have very much been shaped by and limited by this underlying truth. I never complained much or thought much of it until my mid 30s when working full-time became impossible and then after having children when my body turned on me, and I wasn't just letting myself down anymore. I was failing the beautiful baby girls I'd brought into the world. The little angels I'd been dreaming of mothering since I was a teenager.

I thought I was made to be a mum, that it was my true calling and that I would be a natural and that life as a mum would be euphoric and the love would lift me up out of my painful body. Instead I flared; I flared hard, It lasted months at a time. I became an angry crazed lunatic with zero patience for anyone who would happily watch me wince my way through a nappy change without offering to help me. I’d stare at the house in its bombsite state and get angry that no one was compensating for this obvious loss of control or ability. I became more stressed and, in turn, my pain increased. I needed help but but I still didn't understand that I deserved compassion, so I was too ashamed to ask for it or show gratitude for it when it came. I resented and rejected help. At the same time I desperately hoped for it. I can now see myself with the same unconditional love I have for my bubs and accept 100% this is not my fault; I deserve help and love and support even at my worst and most ungrateful, just like I will always give to them no matter what struggles they endure in their lives or bad choices they might make. They could do nothing that would leave them undeserving of compassion and love, and therefore logically as a human, that I too was someone's baby girl; I deserve the same. 

What advice would you give to other moms with RA?

Find a support group quickly; prepare your house in a very occupational health style for your own ease of living once bub arrives (work stations in lounge areas, thick foam base rugs on the floor for playing and rolling and laying with out pain; I had a mattress on the floor in the lounge for a few months to avoid the hard floor before bubs could walk), pay for help if you can afford it; if not, allocate a list and ask friends and family if they could volunteer a task once a week to contribute. Frozen meal preps before birth or ask a good cook you know to do them for you as a baby gift. Baby gates and play pens are essential, room dividers, etc., bumbos and slings for lap sitting, reading. For face to face play you can use an adjustable high chair to sit while you are on the couch so bub is right there with you close up but you are not supporting their weight. This leaves you hands free too for playing, reading.

Ask your partner or mum, or siblings, best friends to bathe them now and then if it's too painful or scary for you. Design your world, your yard, your rooms, your kitchen around what make life easier for you, more comfortable for you. It's more important than anything else that you can last with the relentless daily strains without burning out or severely flaring from fatigue (rolling stools for kitchen work, etc.), little waterproof seat in the shower just to maintain energy and keep off your affected joints as often as you can. And eat clean, start early. Include in your life any calming activities you can mange; salt baths, meditation (even if that's just 20 minutes listening your music in headphones), yoga, stretching in bed before you get up. Ask your partner to get your toast, tea, and pills each morning in bed just to make that first hump of getting up and moving easier with a loving gesture.