Information Reviews and Views

Living With Invisible Medical Condition ~Endometriosis ~NephroticSyndrome

 

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.

 
 I have two conditions which I am learning to live with,
Endometriosis http://www.endometriosis-uk.org/ and Nephrotic Syndrome
https://www.niddk.nih.gov/health-information/kidney-disease

 

 
I have been thinking about times when I said I was fine, but I was most definitely not!! Here are a few I noted:
I am fine!  When a doctor said he would be laughed at by a gynaecologist because my chronic pain was IBS.
 
I am fine! When I am crippled in agony and crawling around the room in pain.I am fine! When I came out of a investigative operation that the doctor said would not show anything to find a cyst had grown so large it had taken over the ovary and was strangulating the fallopian tube and was rushed into an emergency salpingooperectomy.

 

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 am now back at full time work!!).  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!

 Sparkle Hugs and Glitter Kisses  xxx
 
 
All photographs, unless stated, are the copyright of Lorna Liza

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