The darker side of lupus #12

[amandalilley]

I have no clocks in my bungalow........

I have only 1 mirror (in the spare room)

Sounds ridiculous to most of the population but I have lupus.......

What has that got to do with knowing the time or seeing what you look like, is the response I get from friends, family, aquaintances  etc.......

Absolutely everything............

You see, when you wake up every morning or have been up all night, the last thing you want to do is see your reflection in a mirror, the swelling, the rashes, the bulging eyes, the dark circles.....it can reduce you to tears, send you into the depths of darkness, allow the rage to surface so you put your fist through it (yes, I have done all of the above). 

I was never a beauty but lupus robs you of the pleasure of at least thinking you look nice for a dinner, anniversay, a night out. It does not matter what other people say to make you feel better, the mirror represents what you fight every minute of every day and lets be honest...... lupus makes you look ugly and I dont care what anyone says about beauty being skin deep, it just means they dont have lupus........they dont see the despair in a lupus patient that has a rash so pronounced or constant swellings around the neck and eyes that makes them look and feel like a monster.....

And as for clocks.........well thats easy, who in their right mind would want to count the minutes as night turns into day, which turns into night on a daily basis and the pain that makes the sleepness nights in the first place never goes away.

Time is a man made effect which we, as humans, follow to keep order within the world around us and mirrors were invented to ensure we were happy with what we were born with... for me, as a lupus patient, the above does not apply - time and mirrors mean something completely different. Despair, rage, helplesness, ugliness, constant pain, hate and everything negative.......because lupus has the ability to take the good and make it bad....it plays with your mind as well as infecting your body.

May your time and your mirrors be kinder to you than mine.

Much love to each and all that have experienced any or all of the above. X

[littleeffie]

Hi Mandy,

I can relate to this as previously did go through the same until cancer surgery twice.

I then put mirrors everywhere to see my wiggly neck/throat survival scar.Having had a cancerous thyroid removed with less than good after care I got internal bleeding and post op infection causing me to look like a swollen monster.I was told nothing to worry about just post op swelling until my neck burst,sorry to be gross,but it did which saved my life.I spent the next 3 months recovering with IVeverything ,injections ,drains in neck and of course then blood clots all because the medics had failed to realise how people with lupus and associated plus Ehlers Danlos have poor healing .Following that I decided to see the positive side of my less than perfect scar.I lived to be there for my kids and hubby who really after seeing my neck explode don't care how i look so I smile at my tired,ill looking face with suitcases under eyes and remind myself I have looked a lot worse .

As for clocks l loathe most but the ticking of a wooden one my hubby found has a deeply therapeutic effect and distracts me from my tinnitus at night.

We are so often misunderstood or ignored but if everyone could experience our lives for a week ....?

Take care Mandy and I wish you many positive vibes and hugs x

[steven69]

I have not replied to anyone for quite a while, however I am wishing I were living close to you, so that we could meet or a coffee and assure you......you are not seeing the true you.  Lupus does rob us of many things, it robbed me of a partner for starts. He could not stand me being ill nor the frequent visits into hospital.  When looking in a mirror, stand well back from it, ensure the light is behind you....that helps.

Unfortunately because I live in Auckland NZ  and cannot be there with you for the coffee, however perhaps someone else could?  I believe this is a good site to express your thoughts and feelings openly and honestly, so please do keep on doing so.

Hugs Barbara 

[amandalilley in reply to steven69]

Hi Barbara..... I would love an excuse to come to NZ and you would be welcome in my home town of Falmoutn, Cornwall.

I have a spare room and an adapted bathroom.... lol

Thank you for your kind words.

May the universe grant you the strength to remain strong,

Mandy. Xx

[steven69]

I would love to visit, unfortunately I can travel very little now.  I was blown away with your very kind invitation, and may I offer you the same kindness.  I am presently in a large 2 bedroom unit, and may be moving soon to a retirement village.  Juggling with several balls at the moment, exciting yet ..................I wish the same to you, I believe we may share similar views re the Universe?

[amandalilley in reply to steven69]

I am so sorry you are unable to travel much now, I am half way to that but I am trying to make the most of it. 

Off to New York in October for my 50th and have been invited to the lupus unit in New York...but mainly going for the amazing comic con.

Planning a few shorter trips next year but it takes so much planning and the insurance is huge....lol

I tend to thank the universe for everything.....I have no religion as such but follow the principals of budha and thd universe has akways be good to me.

New moon soon so thats my big day for renewal, thanks and wishes.

I will look up to see if there is a nz comic con....that would give me a huge incentivecto make the trip....😃😁

Have a great upcoming week.

Much love to you and your family. X