Thanks for taking the time to visit my JustGiving page.

I was in two minds whether to put my story out there or not.

1. A lot of people don’t know I have Lupus
2. I don’t want any sympathy or people thinking I feel sorry for myself and
3. Talking about it makes me feel vulnerable and weak.

As you can see, I decided to talk about it.  I get fed up with explaining what Lupus is and possibly being too vague and people not understanding when I finally do.  I thought it might raise awareness and also raise more money if people knew!  It is who I am so I might as well be honest. 

I have had Lupus symptoms for well over 10 years.  It was a long and lengthy process to get my diagnosis around 5 years ago.  Finally, I
had a reason for feeling so poorly.  A relief in one-way but also a reality check that this will stay with me for the rest of my life. 

So what the hell is Lupus? 
The million-dollar question! I always hate it when people ask me
this.  Where do you begin explaining a condition that has multiple symptoms, which fluctuate and differ in every ‘Lupee’?

I’ll try my best…….

Lupus is an autoimmune disease.  It is an invisible condition that mainly
happens internally so Lupus sufferers don’t look ill. My body likes to think of itself as a virus.  By trying to do it’s job in protecting me, it is in fact destroying me and attacks all the goodness that I possess.  

Symptomatically, this means I have intense fatigue and exhaustion, joint pain, muscle pain, memory problems, kidney problems, lung inflammation, bald patches, sensitivity to the sun and mass skin rashes and scarring.  It attacks all the healthy tissue surrounding my organs.  

The medication I need to take produces 10 other side effects, which consequently means I need more drugs to inhibit them but also depletes my immune system.  This results in catching every other common illness so things like a standard cold can turn into pneumonia easily.

So you might be thinking ‘fair enough but that doesn’t sound
too bad’.  I’ll try to make it more clear……..

I want you to imagine the last time you had proper ‘can't get out of bed’ flu.  Now add on having the worst hangover and being hit by a bus!!!! 
You don’t feel better after a week of it either; flare-ups can take
months before they settle for a short period.  

Lets say a healthy person wakes up in the morning and has an
unlimited amount of tokens to use on each task per day.  So wake up, get washed, then dressed, eat breakfast, get the kids ready and off to school = 3 tokens used (it doesn’t really matter though because a healthy person will replenish their token stash throughout the day).  

Someone with Lupus wakes up and panics because they already know today is one of those shit days whereby you’ve been dished out 12 tokens for the whole day.  So I’ll literally drag myself out of bed, heave my 10 ton heavy legs to the bathroom to get washed = 1 token used
already.  Then I’ll get dressed and walk my painful joints down the stairs to make the kids some concoction that resembles breakfast = 2 tokens gone.  I’ll sort and kids out and get them off to school = 2/3 tokens
gone.  So far I could of possibly used half my token allowance and that is before I have done anything productive or fun that day.  I need to think carefully at this point as I still have to go to work, collect the kids, do dinner, washing, bath time, bedtime and shower myself.  Note I’m not adding in anything like a night out, party or family gathering as that shit depletes my entire token stash!  

Literally any mundane task will zap my token supply, which can’t be replenished or borrowed from the following day.  ONCE MY TOKENS ARE GONE, THEY ARE GONE!!!! I’m pathetic then and can’t stand up in the shower or even sitting up on the sofa hurts.  Having a nap or just ‘rest’ as family members will preach, will not provide you with anymore tokens either.

The tiredness/exhaustion token is just one element, on some days Lupus chucks in the joint and muscle pain, other infections and vomiting from the medication just to spice it up!

‘Brain Fog’ is the worst. 
It makes you feel like you have early onset of dementia.  Using your precious tokens up to concentrate on an important conversation, only to retain none of it seconds later makes you feel stupid and wanting to avoid people. 

Every single thing I do has to be planned that day in order to function and get through it.  It’s a bit like a young person being trapped inside an elderly body.  Feeling like your body is fighting itself and you are losing.

I let people down all the time, cancelling at the last minute and being that constant ‘blow-out’.  No one understands because ‘you look fine’.  

It can take its toll on friendships too, although I have met lots of new ones such as Dermatologists, Rheumatologists, Neurologists, Opthalmologists, Radiologists, GP’s etc……pretty sure I’m exhausting all of the NHS Services as I am up there far more often than I would like!!!!!

So now I have banged on about how negative Lupus is, I also need to say that this disease is a constant reminder that I can’t take life for granted.  I now appreciate all those little things that give me great happiness.  It has shown me how strong I am in so many other ways. 
That’s what Lupus is, a test of strength.  Some days you win, some you lose but you still get up the next day and try again. 
Plus I’m a stubborn old bird, which helps you over-ride the crap times!

After all this information, you might be thinking ‘why the hell are you doing a 16k run if you feel so rough?’  I am actually asking myself the same question!

I have been blessed with two truly fantastic mates who know what daily life is like for me.  They are both utterly mental and want to do something to help me; they signed themselves up for this run to raise awareness and funds for Lupus UK, which will go towards funding research and hopefully finding a cure. 
I was overwhelmed that others would do such a kind gesture, followed by intense guilt that I couldn’t let them do it alone so here I am giving it a
shot too!  I am not a runner and have only ever done a handful of 5k’s in my life.  I know it will set off another flare-up but I am willing to give it my best shot.  I also have a fantastic husband and family that always support me and are rooting for me to complete this run.

I would be so grateful to anyone who would be kind enough to help support this cause and me.  Not matter how small; it will be appreciated so much more than you know.

Thanks for taking the time to read my story.

Kylie xxxx