How are you? Three little words. Often some would complain they are not asked enough and on the other hand not answered truthfully enough. I would fall into the not truthfully enough about 99% of the time.
Why? Basically it comes down to if I know you well enough. I will say I'm ok to general people those who dont really know me. Because who wants a full conversation with a near stranger over whats up. It is easier to say you are ok instead of exploring why you are not. Those who really know me will know when I am not okay. When things are not going well.
Recently madam had her first anaphylactic reaction to something new. We have never had to use her epi pen and up until now it was always just there that safety line for just incase. Having to use it was scary. The whole incident was scary. I was in denial to be honest I thought it was a mild reaction there were no hives she wasn't sick so it was odd. What she did have was a persistent cough, her tongue felt funny, her throat was itchy and tight she complained of itchy lungs which was bizzare. She later told me she felt dizzy and light headed and she was hoarse. I was so adamant to let the anti histamines work but they didn't. Thankfully the epi pen did and she had to go and get checked over in hospital. We're she spent the next 16 hours. Due to her cough returning 5 ours after the initial reaction. Her heart went low and she said felt funny and her throat was reactive. Steroids and anti histamines helped and we were eventually allowed home.
Now nearly 4 weeks on people ask how we are and how she is coping. I'm not sure I have even fully addressed everything in my own head. Adding yet another thing to avoid has proven difficult. People might assume it's easy but it really really isn't. Madam is now avoiding nuts and soya due to allergies, wheat and maize due to intolerance and maize in all forms even starch sets off reactions. Also avoiding chocolate cheese citrus and caffeine due to being diagnosed as having migraines and having to avoid these triggers ( though not sure these are her triggers). Okay so got all that?
Let's start with bread, normal bread is a no due to the wheat and gf bread is 99% no due to either having soya or maize in and in some cases may contain nuts. I did find one loaf so suppose that's better than nothing but at £2.80 for what looks like half a loaf is not cheap. Pasta is a no, gf pasta is made form corn in most cases we have found rice pasta but it doesn't cook well. Found a lentil pasta to try however so will have to update there.
Everything has to be made from scratch there are no quick fix meals i can just pour from a jar. Because they contain maize starch or corn flour or wheat and Chinese meals soy. Keeping up? There are no cakes or biscuits I can buy. Crisps are even a challenge. Yoghurt we have found one brand of the planet yoghurt she can have. Which we will try and jazz up.
Am I Okay? No I am tired and exhausted just from trying to feed my child. She is living off plain salad and jacket potatoes most of the time with fruit and crisps. Which yes is prob quite healthy for a child her age. But hard. She sees things her brother has, as I can't stop him having these things, and it hurts her. Treats consist of sweets atm which is not ideal.
I don't think I'm addressing things like food could kill her... no one should have to cross that and although we have had epi pens for 3 years your mind set changes when you have had to use one. These are life savers and I am like a drill sarg making sure she constantly takes her things with her.
So on top of everything else like her bowel issues and joint pain and hellish migraines we have little man looking more and more like he is dyslexic just like mummy. We are waiting on a nerve conduction test and a full on eye test at the hospital at Southampton. This week he is having a co ordination test with his physio and occupational therapist. And my life is full of appointments. Job? Where could I fit one in lol. We are closing out this year fast. And I am really not sure how I've not turned grey or pulled it all out. I think I must have some special mummy reserve and some very good friends who do let me vent often.
Ending? Maybe we should all be a little more open and honest with how we are it might make the world more understanding.
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