Lupus, an honest account.

In Books, Family, Food, Health, Health & Wellbeing, Lifestyle by Susan

It is not something that I have talked about to anyone.  Very few people know in fact.  A small amount of family and some friends that I trust.

I have been on medication and under a consultant for several years now because I have Lupus and possibly Sjogren’s syndrome.  The Lupus I am told is only mild which I am thankful for.  There is no shame in having either of these I know so why haven’t I shared this information?

Well for one people do treat you differently.  They probably don’t mean to.  But they become sympathetic and start to feel sorry for you maybe without even realising it.

A mere sneeze can escalate a whole conversation back round to ‘Oh poor you is it the Lupus?’.  Well no it was just a sneeze.

I want to be treated normal.  There will be days where I struggle, but there is no need to pass that angst onto any of my family.  My boys and my husband have their own lives and own things going on.  I am NEVER going to pass my struggles on to them.  So I tend to keep quiet and just get on with life.

Which is exactly what I have been doing.  Managing my life, just plodding on day-to-day.  I guess almost complacently.  Because BAM out of nowhere you get a really bad cold which develops into a chest infection in the month where you cannot stop or slow down.  It happened to me whilst I was with my youngest filming BBC’s Casualty in Feb.  We were up and down to Cardiff on the train, sleeping in hotels.  Filming during the day and you know what Its like, you never really rest away from home, especially when you have a 9-year-old to look after.  No sooner did filming finish, London Fashion Week AW16 started.  I was make-up designer for one of the shows, so I had to keep going.

Then the jobs finish and SLAM, your body is finished, (or that’s how it feels).  Out of choice I avoid the Doctors.  I always think there is someone worse off than me who could do with that appointment.  BUT I had to go.  I could barely walk down the road with the dog, so I knew something wasn’t right.

My GP was super lovely, which If I am honest made me cry even harder.  In her opinion she believes that the chest infection that I had, had triggered a Lupus relapse.  She gave me a steroid injection to give me a bit of a kick-start and advised me to contact the consultant.

NHS appointments are hard to get, like REALLY hard.  Unable to get an appointment I spoke to the clinical nurses who advised me to up my Hydroxychloroquine until I saw my Consultant in June (Yes in June).

So that is where we are at now.

I had my appointment this week and to be honest I knew what he was going to say.  He was quite patronising, made worse because he had a student doctor in with him.

I am not entirely sure if he thinks because it is ‘Mild Lupus’ It makes it OK.  But surely that is relative to the person as an individual.  I mean I am a still young, fairly active 40-year-old with 3 boys, a husband and a dog.  I am a professional Make-up Artist and a writer.  So actually Lupus in any form can be debilitating.  I am having to now juggle my diary ALOT and really think about stuff before I just do it.

I was told I was also suffering ‘Chronic fatigue’ which is common with Lupus.  Nothing I can do.  It Will probably come and go Which is good news isn’t it?  (His words not mine).  Oh and the dry eyes.  Yeah he also seems quite blasé about that too.  I think that annoyed me more than anything.  My eyes on a good day feel like I have sandpaper in it.  I can’t go anywhere without having a bag with a small compact mirror, cotton bud and eye drops.

So after waiting 2 hours for my bloods to be done I have come home to assess the situation.  Well it’s not really a situation.  It is what it is.  I rest when I can.  Oh and do as I am told and take my medication.

LUPUS-(10)

Which brings me back to why I am now talking about it now?

Because somewhere out there, someone else may be going through the same experience as me.  I am interested in helping others and also getting advice.  I haven’t posted this for sympathy.  If you think that then you have me completely wrong.  I just feel that now is the right time to open up that honesty box and really be true and raw.

Hopefully by writing this first honest encounter of my journey with Lupus will explain a little bit why I am having a lifestyle change.

I am going back to yoga class, looking into Reiki again, doing Angel Cards, Crystals, Clutter Clearing and Feng Shui.  I am also totally overhauling my eating habits and food.  All of which I will be blogging about.

In love and Light…

S x

What I am currently reading: 

Eat Pray Love by Elizabeth Gilbert

&

Clear Your Clutter with FENG SHUI by Karen Kingston