I wrote this post originally in 2014 when I had been diagnosed with Nephrotic Syndrome in 2013 after three years of many operations from being diagnosed with endometriosis. It was a very tough time and when I wrote this I was feeling hurt, pain and confusion. Here was my story:
We are asked many times throughout the day, ‘How are you?’ and how many times do we answer ‘I am fine!’, even when you feel the total opposite?. I realised that I do this all the time, although I realise this is what people really want to hear. They don’t want to hear your medical woes and upsets as they probably have enough things to deal with themselves.
Endometriosis http://www.endometriosis-uk.org/ and Nephrotic Syndrome
I am fine! When the hospital tried for over an hour, without any pain relief, to fit the Mirena coil but discovered due to an inverted uterus, this was not possible.
I am fine! When I went in for a quick procedure to have the Mirena coil fitted under anaesthetic and ended up with a perforated uterus.
I am fine! When I gave up my dreams of having a family and had to have an abdominal hysterectomy.
I am fine! When I have constant pain through a nerve damaged from one of the operations.
I am fine! With all the infections I caught during my operations and procedures.
I am fine! With the horrible treatments to infections and the increasing amount of tablets I have to take.
I am fine! When I had my last ovary removed sending me into surgically induced menopause.
I am fine! That the local hospital have said that there is nothing more they can do for my endometriosis,as I am an ‘unusual case’.
I am fine! With my body shutting down, fainting from the hot sweats, hallucinations and sickness.
I am fine! With the Hormone Replacement Therapy which causes many side effects and so many tablets to take, every day!
I am fine! With all my scar tissue that is, not only noticeable, means I always have a large stomach but means the pain never goes totally away.
I am fine! That my hormones are all over the place and I can be crying one minute and deliriously happy the next.
I am fine! That friends and family are starting and extending their families and whilst I wish them all the love in the world, feel though my heart is being torn out.
I am fine! That for over a year I can not keep awake and have no energy and I am actually ill with tiredness.
I am fine! When I ended up in hospital but was told it was just a tablet imbalance.
I am fine! That I was, for years, a size 8 -10 and swelled up to over a size 18-20 and now, after treatment a size 14/16
I am fine! That I sometimes can not walk because my feet and legs swelled to triple their size.
I am fine! With the cramps in my legs that come out of the blue, which means I can not drive and swim.
I am fine! That I often can not wear my rings, as my fingers are so swollen.
I am fine! That it took months to do a urine test to reveal my kidney damage with nephrotic syndrome.
I am fine! That I had to have a kidney biopsy at Hull Royal and had to lay flat for six hours.
I am fine! That I was left to see if I went into spontaneous remission, feeling very ill.
I am fine! That my face swells like a balloon and my skin breaks out and nails break and my hair falls out!
I am fine!That my treatment for Nephrotic syndrome was only prescribed a couple of days before Christmas which meant I was so ill over Christmas that I missed my Grandma’s funeral.
I am fine! That I have not been fit for work for six months, after having so much time off before and now will have to adapt work to my conditions, if I can.
I am fine! That I have lived in my dressing gown and slippers and missed so many social gatherings and let down friends that I am not sure I will have any left.
I am fine! That I feel as if I have aged years and look years older.
I am fine! That I struggle to wear contacts anymore due to the tablets which drain the extra fluid which means my eyes are so dry I have to wear glasses.
I am fine! That the next stage of treatment for Nephrotic Syndrome is scary and the future prognosis is unsure.
You may look at me and think there is nothing wrong. I may be laughing, I may be dancing.
You will not see what I have done to be able to do so, or the pain of the aftermath.
Do not judge by appearances.
People with conditions like mine are often misunderstood. Sometimes wish I could have a large plaster to show people, there is actually something wrong!
However if you do ask me how I am, you can bet the answer will be…. ‘ I am fine!’.
Hope this has made you think of people with an invisible condition.
Update: I am now actually fine!! I still have symptoms from both conditions but have learnt to control them myself. I have a fabulous social life. People say I am always out but I feel that is because I have missed so much in the years I was so ill that I’m making up for lost time, and what fun it is!!! (Not so much fun on my bank balance, although I am pleased to report I have been back at full time work for three years now!!). I also live by the motto that I am here for a good time and not a long time,so I forget about the housework and other chores if there is a chance to make some memories.
I have learnt to take recovery days. Some days I will move from the bed to the sofa and back again and not beat myself up for being lazy. I still take a lot of medication that causes issues with my body, hair and skin but this is the body I have now and I just have to go with it! My scars, both physical and mental, show I have survived!
I do not think I could be here without the love and support of Pirate Mick who has been here through all the bad times. I now want to make sure we are truly living our best lives!