Ellie has had skin and health problems from birth. During her early years, I have been a helicopter mum in respect of her health, mainly because there were a lot of unanswered questions and I didn’t know what do for the best or what to expect. I documented everything, took photos of every reaction and lived in a state of high anxiety. Although not all of my questions have been answered I have come to the realisation that I need to allow my daughter to live within her limits rather than my own otherwise she won’t learn for herself and move forward to a positive, healthy future.
Of course I still manage her day to day medication, lotions and potions. I’m still there to wipe the tears, speak to the doctors, be on hand for cuddles through the night when it all gets too much for her but I have to let her go….. a little.
When we first received the diagnosis of photo aggravated eczema and solar urticaria (in addition to severe chronic eczema) I imagined a life in the dark for my beautiful girl. One that could only be viewed from a window or whatever protective bubble I decided to place her in. I was terrified of going to public places knowing that the sunlight on the way there would hurt her or the fluorescent lighting would penetrate her sore skin and make things worse. 18 months post diagnosis I’ve learned a lot of tricks along the way and realise now, it is not always the case. We have a lot of tools up our sleeves!
- UV window filters
- Broad spectrum factor 50
- Sun hats – a must from March – Sept
- Sunglasses (when needed by her not when I tell her she’s feisty like that)
- UV Tents and Gazebos and sails
- Avoidance of prolonged exposure to sunlight between 10-4pm when UV levels are above 2
- Ranitidine (an alternative antihistamine – H2 blocker which is amazing, haven’t noticed it change her outside reactions but has greatly reduced reactions in places with fluorescent/low energy lighting)
Things that she isn’t a fan of and aren’t an available option in her eyes are.
- Sun block (anything visible to others)
- Bandage type clothing or coverings to be worn in public – she won’t entertain the idea at all.
- Total avoidance of sunlight
- Exclusion from activities
As this is her first year of school, my head is full of what if this happens and what if that happens? I’ve had to have a stern word with myself and ask myself what is the worst that will happen? Exert herself too far outside of MY comfort zone for her, we will have long periods of low energy and infections. Skin flare ups, headaches, tummy aches and a shadow of her self. Exerting herself from her perspective allows her have fun with friends, be included, live, laugh and have fun. So you can understand that it is fine balance between prevention and cure. That is why this year I am concentrating on working towards a balance that works for her, so going forward in life she knows what her own limits are.
She is teaching me to chill out a bit. It’s like, “ok mum I’ve got this” I’ve told her how her body is working and important signals she can’t ignore. She can tell me where she feels discomfort and when a situation isn’t tolerable and together we can work out what is best for her. By doing so, we are building up a partnership so that she has the best quality of life.
I am still hovering around her – more a birds eye view now rather than an annoying wasp next to a sugary drink on a sunny day!