Question And Answer Time – Expalining Life With Chronic Illness 4/01/18
January 6, 2018
Strength and Medical Care
I am honoured to share another Q&A time spent with a really special Mum! This is another story to celebrate the strength and raise awareness for Mums in pain and Invisible Illness. A post to discuss life with Chronic Illness and coping with medical care and treatment.
This amazing lady has asked to remain anonymous so I’d just like to say, she is one of the loveliest people I’ve come across and a real strength to our online group.
This beautiful Mum has not only shown me love and support, she supports every member in the group when they ask for guidance and advice.
This brave lady has faced so much and her strength is truly inspirational! She has been through an incredibly frightening journey and has faced most people’s worst nightmare, all whilst coping with a newborn baby and trying to be the best Mummy she could be! She talks about her medical care in this post and how it has changed her life.
This lady is a perfect example of strong, brave and inspirational women….Here is her story….
1) What is the cause of your pain?
Cardiac arrest followed by multiple organ failure, almost killed me, leaving me with heart failure, problems with my liver and kidneys.
2) What is your day to day life like living with this pain?
A cocktail of medication for life and problems with stairs and tiredness, not to mention the regular hospital visits.
3) What have you been treated like by medical professionals, good and bad?
When my life was on the line, I couldnt fault the medical professionals and I literally saw every specialist in the hospital, but getting someone to listen to you and take you seriously beforehand left me feeling like I was losing my mind.
4) What do you wish the medical profession understood about you and your pain?
I just wish they understood what had caused it and how to treat it effectively. All I hear is that my situation is massively understudied and even at present, there are still trial runs going on in London to ascertain what to do.
5) Name one improvement needed to your medical care, something you wish the NHS did better?
Not so much to do with my medical care now but before the situation gets out of hand, I think that medical professionals need to listen more and just because your symptoms are not always ‘textbook’, it doesnt mean to say nothing is wrong.
6) What do you wish your friends and family could understand better?
How hard this kind of thing is to get over. Dont get me wrong, there isnt a day that im not grateful im alive, as I was half an hour away from losing my life, but having to learn to re-walk again, eat again and everything else that goes with getting back to normal life as possible as well as having a newborn, is mentally very hard to process.
7) What Support do you get from friends, family or care staff, if any?
I received a lot of support from medical staff when I was released from intensive care, as I had to re-learn how to do everything as well. My family have been incredible and I would of crumbled without them.
8 )What do you miss the most from your previous pain free life?
Not having to take shed loads of tablets every day and that I didnt take more time to appreciate what I had beforehand.
9) How has your pain changed you as a person, for better or worse?
I try to be very mindful and there isnt a day that goes by that I dont breathe a sigh of relief that I get to see the day again. I never thought I would make it out.
10) What is your super power? What you do to hide the pain from those around you?
I dont try to hide it, I try not to let it define me. If my friends mention it and ask how I am, I will tell them but I wont labour on. It was something truly horrendous that happened but I wont let it be what I am about.
11) What is your “spoonful of glitter?” What you do to add sparkle to the bad days?
My music! always.
12) If you had one wish, what would it be?
It would be for my Mum and Dad.
I think you will all agree, this Mum is absolutely amazing!