The BIG Bad Wolf
On day 8 I notice my hair is falling out, in fact its hard not to notice. My hair is everywhere. I could cry… ok I did cry. It’s taken almost a year of DMARD therapy to encourage my hair to grow again. Some of the new 6 month old 2 inch long hairs fall out. I find myself talking to my hair in the mirror “just hold on”. I do a little research and find that anaesthesia can cause hairloss, perhaps thats whats happening? this is easier to deal with than a potential Lupus flare. After i’m done feeling sorry for myself, I buy some more headbands, embracing: my inner bohemian…consumerism.
By day 10 my gums are bleeding, my mouth is full of massive ulcers, my hair is still deserting me, my eyes hurt, my heart rate is going bananas and i’m freezing and boiling at the same time. Defintely Lupus flaring up. Which was almost inevitable, but i’d hoped I could avoid it. I’ve learnt about acceptance, so I don’t fight it. Once again drawing on all the self hypnosis skills, visualising my body healing, I rest more, drink more water, max out on Vitamin C. Research in France has shown when Lupus patients receive huge doses of Vitamin C (6000mg -10000mg) under supervision of Rheumatologist remission is possible. I’ve been taking 3000mg in the run up to my surgery and continue to do so now. Vit C isn’t stored by the body so high doses just pass through your system if the body can’t utilise it.
This week I meet an interesting person who dramtically changed their lifesyle and eating habits following a life threatening illness. Its helpful to meet and talk to people who have looked for alternative ways to heal. There is a mutual respect between us for not giving in. Reminds me of a saying I go back to ‘give up? give in? or give it your all?’.
I’m reminded that this wolf cannot be fought and beaten but responds well to gentle handling. I stock up on anti inflammatory foods and supplements. Husband drives me to local art gallery to soak up the peace and beauty, I leave feeling inspired by other people’s creativity.
I’m reading a lot, mostly books written by women who are seeking an alternative future to what mainstream politics, business and medicine can offer.
Day by Day
During week 2 I can comfortably move my leg forwards about 30cm in front. I can sit on my bed without any discomfort. I’ve found a routine that works; 2 hours up moving around, followed by 1-2 hours lying down. Building up slowly to avoid exhaustion and unnecessary pain.
I can’t stand with both of my legs together and my back straight. Either my hips are level, back straight but leg is out front or legs together and I’m bent at the hips. Muscles around operated hip, pelvis and low back are still very tight.
Bruising really showing now, though daughter declares “they’re impressive mum but not as good as mine when I broke my foot”! I think mine are worse…always competitive!
I’m still really slow and get tired quickly and totally. We had a walk around Dartmouth, a distance which would have taken 10 minutes ordinarily, it took me almost an hour and then came home and slept for 5hrs to recover!
On day 14 I have my stitches out. I question the nurse about whether I should be concerned that I still can’t feel my foot, she doesn’t seem worried, so i’m not either. Today is a momentous one, so loss of foot feeling can’t get in the way! I can have a bath or shower, I choose both-so good!
Week 3 and i’m feeling my strength returning, towards the end of the week I can feel the Lupus calming down. This is such a relief and probably the shortest flare up i’ve had in years. I’m getting out more, still on crutches, still oh so slowly. People – women – mothers, have stopped to tell me they’d had similar surgeries and how great i’m doing. A woman in her 70s strides by telling me she’s had two knee replacements and a hip replacement “keep going!!” she declares. I’m struck by their kindness and encouragement.
I can put weight through my leg now, at first my leg gives way and I can only hobble a few steps. After a few days I can walk relatively normally for a few paces. By the end of week 3 I can walk unaided around the house. I can put my shoes on and paint my toe nails. I’ve also been able get out in the garden, which despite my negative forecasting is still looking beautiful and hasn’t turned into jungle of brambles overnight. My ever patient husband fills up watering cans so I can sit and water my plants ❤️
Increasing weight distribution in my yoga practice, I’ve progressed from sitting to standing and pleased i’ve not lost too much strength or flexibility in my upper body. I’ve developed some pretty decent muscle tone in my upper arms from using the crutches.
I’ve weaned off the painkillers and the actual hip joint feels fantastic all the grinding and rubbing has gone, its only the muscles that ache.
I’ve reached a real turning point in recovery but also in forgiveness. I have been patient with my body and its paying off. The challenge now is to remain in this path and not be tempted by the path of productivity.