The Simple Things Magazine. Taking time, Hygge, Reflecting, Honesty, Truth,

Reflection and moving on.

In Health, Health & Wellbeing, Lifestyle, lupus, Makeup by Susan

I will openly admit that I have been really quiet on here.  There have been some issues that I have had to deal with through 2016 personally that put me in a place where I was totally flat with lack of inspiration.  If I am honest I was completely lost and felt that would not be the best place to write from.  Moving on in to 2017 I have made the decision to be positive and make some changes whilst accepting and using reflection as a tool for my journey.

It was when I sat yesterday at 5:15am in the quiet, reading my January Issue of The Simple Things magazine that a moment of ‘synchronicity’ happened.  That was in the form of an article about Lizzie Carr (Lizzie Outside).  Since surviving Cancer, Lizzie has made dramatic changes to her lifestyle, career and is an Environmentalist.  I will let you read more directly from her blog (Please do go an have a read), she is such an inspiring lady.

What does this have to do with me?  I don’t have Cancer – I need to say that right now, I don’t want to lead people incorrectly.

In the article Lizzie describes how she feels uncomfortable talking about her Cancer, now wanting it to overshadow the work that she was doing.  The article reads that she was embarrassed and ashamed by her illness and felt that by not talking about it she was in control, but instead ‘it’ was controlling her.  Now she has started embracing it and talking about it, realising it was a huge part of her. 

That’s the bit which really hit home with me and struck a chord.  All this time I have been ‘not‘ talking about how I feel and the illnesses that I have had and still have, thinking that if I talked about it, it would label me, and yes I felt ashamed.

2017 will see me being more open.  In 2017 I intend to be raw and honest with you all, and not be ashamed any-more.  You are going to find me talking about having ITP as a child and having a Spleenectomy.  Plus I may mention about having Lupus, Sjorgens and re-growing a New Spleen.  Sod it, I might even talk about having major surgery that became so life threatening that it had to be abandoned.  If I am feeling really brave I may even chat about my bladder weakness.  Hell why not throw in some child birth stories while I am there.

What I am trying to say (Not necessarily all in this post) is that all of these things are a part of my life and they make me.  They have made me the person that I am today and it is time to embrace that.  Just like Lizzie Carr has.  Who knows I may actually inspire others.


In November I decided to take control of my health (or so I thought).  I visited my lovely GP (She is genuinely lovely) and took a whole list of questions for me to discuss with her.

  • Firstly to discuss my treatment of Lupus and Sjorgens.  Since my last visit to the hospital, I have been really frustrated with my treatment and the way I was spoken to and dismissed.  I did actually post about this which you can read here. There were a couple of options for me to think about, 1 being swapping hospitals altogether and going with a new consultant.
  • I also wanted to discuss the ‘New Spleen’.

This is going to take some explaining I know.  Back in 2012 during a routine scan for kidney stones, they discovered a mass in my stomach that shouldn’t have been there.  Hubby and I spent quite a few weeks silently thinking that I had Cancer, whilst having scan and test after test.  After finally having a ‘Nuclear Scan’ The consultants came to the conclusion that my body had in fact regrown a spleen.  (I had my ‘actual spleen’ removed in 1988 due to a blood disorder ITP) – Confused yet?  I certainly was when they told me.  Its quite rare apparently (I have been told so many times that I have conditions that are ‘quite rare or special’).   Anyway my ‘NEW SPLEEN’ isn’t in the usual place.  It is tucked between the bend in the stomach and the stomach.  Basically I am in pain from it daily.  Every-time I eat a heavy meal or sit in a car for too long I feel like my stomach and spleen are having a fight over space.  It is also not even full size.  They decided to give me another spleenectomy in 2012.  I mean who has 2 spleenectomys in a lifetime?  Clearly not me…because when I came around from the anaesthetic, I was told that midway the operation became too life threatening that they had to abandon it.  So I had major surgery…for nothing.  Obviously I thanked the surgeons for actually saving my life (I am not a bitch).  Totally grateful, but 4 years later I am still living in the uncertainty of a spleen that is not full size in the wrong place…

*pause for breath and go and make a cuppa if you want.*

Back to my Doctors visit… New Spleen (Remember?)… Anyway, I was discharged from the consultants back in 2013, given repeat prescriptions of Strong Ibuprofen should I need to take them and kind of left (Discharged).  So I wanted to discuss with the doctor these thoughts.  I was told they wouldn’t attempt to remove the Spleen again unless my bloods went funny like they did in 97/98 (ITP), but nobody is actually checking my bloods.  So how will they know if my bloods go funny?  My lovely GP agreed that yes 6 monthly full blood tests could be set up, so that we could monitor any changes.

  • Then we have the issue of the bladder weakness.  I literally had my eyes averted to the floor as I mumbled that I didn’t think my pelvic floor was very strong and I do have moments where I have bladder leakage.  (Sorry kids if you are reading this, but this shit just got real).  Again my lovely GP, just simply said that she would refer me to a clinic that specialise in this field.  That’s it.

Follow up

I had my blood tests and made an appointment with her for 2 weeks later to let her know what I wanted to do with the Consultant swapping for the Lupus.  I had barely got my words out before my GP stopped me and said, we have a few irregularities with your bloods.  They are not right and we need to find out why.  Suddenly the Lupus is at the bottom of priority pile.

She stated that she wasn’t sure why, but I was EXTREMELY anaemic and they weren’t sure if it was the Lupus causing it, or the New Spleen playing up or something else, but I needed to have a much more detailed blood test to see.  OKAY.  Bloods taken and 1 week later being told that I had an Iron Level of 8 and next to no folic acid.  The Doctor wasn’t sure how I was even functioning and quite frankly had every right so say I was ‘Bloody knackered’ (She actually said those words).  She doesn’t think it is the spleen, but her priority is to get my levels back up.  So I was send away with strong iron tablets and folic acid and told to rest.  I have to go back for more bloods in a couple of weeks to see if there has been a change.

Taking control

So I took control and thank goodness I did.  Had I have not actually questioned a few things and demanded (In a nice way) that a health action plan was put in place, then I would not have had those blood tests and be still sitting here feeling totally fatigued thinking that was normal.  Interestingly people do ask me if I feel different.  What is different?  The thing is when you live with something all the time it becomes a part of you.  So you get used to feeling exhausted and that becomes ‘your normal’, if you are in pain all the time, then you just get used to the pain.  I try not to take pain killers all the time if I can help it, not only are they not good for you, but there is no way of monitoring your body if you are masking pain all of the time.

Moving on

I am moving on this year, taking it one day at a time and embracing what comes health wise, whilst navigating my work and home balance.  I am making some goals because I like a plan, but they are going to be broken into smaller realistic ones.  I work freelance and work from home and am a juggler (not the clown type), but I am a multi-tasking Mumma.  Having 3 boys keeps me on my toes.  They are not young babies, they are now 10, 16 and 19, but that is a whole new challenge.  As well as working as a freelance Makeup Artist, I am also a HD Brow Stylist and write this blog.  You will also find me navigating trains in London with Archie (10) who is a child actor;  This is a whole other post because the time you have to dedicate at short notice to castings and jobs is insane, but he loves it and that makes me happy.  Anyone who thinks that having a child actor is something to be taken lightly is in for a shock.  Don’t do it if you are not completely dedicated and ready to change your plans at the drop of a hat (or phone call).

This year I am making a promise to myself to do the best I can and listen to my body more and not beat myself up if I can’t physically do something.  I want to embrace positivity and live;  Like really live and do fun things and create that true Hygge for me and my family.


My mantra that I created as the belief and backbone for all of my businesses has always been:

Life is for Living.  Live It.  Breathe It.  Love It.

I lost my way big time over the last 4 years and I will hold my hands up to that.  Everyone makes mistakes.  Shit happens.  It is how you pick yourself up and move on that counts.


In Love and Light

Susan xxxx