I thought i was going slowly mad but my reality was i had Lupus (SLE)

Just before migrating to Australia my left arm felt numb. It began to concern me that I'd had a stroke or a transient ischaemic attack.

http://strokefoundation.com.au/what-is-a-stroke/types-of-stroke/transient-ischaemic-attack-tia/

I was 35 years old, working in Salford, Manchester as a Health Visitor and a Midwife. I was fit, very slim at 60Kg and I'm 172cm (5 ft 8 in). I went to my local gym 4 times a week and had been a gym junkie for 4 years. I was so proud of my health and my body. I ate healthy food and I was a non smoker. Alcohol was a weekend thing and not excessive.

This was my house in Monton, Manchester.

Off I toddled to my GP. Over the space of a week it was like my arm was freezing and defrosting. It started with my left hand. It was numb but still usable and this lasted 2-3 days. This was followed by the sensation reaching my elbow again for a few days and finally it arrived at my shoulder! So my whole arm from fingertip to shoulder was affected.

My hand and arm were pale and slightly mottled but I do have Reynauds.

http://www.medicinenet.com/raynauds_phenomenon/article.htm

Oh I was worried. When you're a nurse you know too much. Way too much.

I was on the oral contraceptive pill and had been married a few years.

My GP checked me over and decided it wasn't a stroke or a TIA but had no idea what it was. He wrote me a referral for a neurologist at the hospital.

After a week it resolved spontaneously.

I decided to stop the OC Pill. With my family history I knew it was a risk factor that i didn't need.

Ironically the appointment for the good old NHS outpatient neurologist was for a week after I'd left England. I was doing a big trip around the world on my way to migrating to OZ.

We'd planned on travelling across Canada, 

USA, 

Mexico, 

Cuba, 

New Zealand 

and then arriving in Sydney, Australia.

With what I know now, this was vasculitis. It has happened again, just before I was diagnosed with Lupus. It was one of the first signs that something was wrong.

At the time you think you're going mad. It doesn't make sense. You wonder if you're imagining it. You're not.

http://www.rheumatology.org/Practice/Clinical/Patients/Diseases_And_Conditions/Vasculitis/

The next time it happened it affected many other parts of my body. Again it was my arm. Then a week or so later it was the left side of my face. I only realised this as i was applying make up to my face before a home visit to a client. I noticed that one side of my face felt weird. I pinched my eyelid on both sides of my face. The left felt different to the right. I hardly noticed the pinch.
Again it lasted a few days to a week.

Then I was walking down Brunswick Street in Fitzroy, Melbourne with a friend and my left leg went 'funny'. It felt sort of numb, sort of dead yet I could walk. My friend had noticed that my face had gone pale at the same time. She drove me straight home. It resolved within a few hours.

I went to see my GP. He told me he thought it was either Lupus or MS. I refused to believe it was either! I wasn't as sick as my friend Janet and that's how I saw Lupus. I saw it as a disease where you were nearly dying. I was tired but I wasn't that bad. He gave me a referral. 

He told me if it happened again i needed to go straight to Emergency at the nearest hospital. It did happen again and I got my husband to take me to St Vincents' Hospital in Melbourne. I was checked over by a Dr and he said I had 'GOK'.

In all innocence I replied, 'GOK?'

'Yes', he said "God Only Knows'. 

In other words he had no idea. It was so baffling that he wasn't interested and I'm sure he thought I was making it up. Just great. I felt really stupid.

If we as patients feel not believed, not listened to, we are terrified of going to see a Dr with yet more crazy symptoms. 

I was grateful that my GP DID BELIEVE ME. 

I'm sure you Lupies can relate to this story. When it starts off (SLE) the things that are happening to your body are so weird. Its hard to make sense of it yourself. This is typical before  diagnosis. You start to think its all in your mind. I recall going to see another GP as i felt so ill and needed another opinion. She told me to get some more sleep. It was probably viral and basically to get over it. I wasn't listened to. This GP was a private (not bulk billing GP) and had come recommended to me and worked in a more affluent area of Melbourne. I felt stupid again. 

Once I found a GP that did believe me  and take my symptoms seriously I'd done a lot of harm to my body. This GP bulk billed me and worked in a poorer area of the city. Over 90% of lupus patients aged 30-45 are women. How convenient to label us as neurotic. After all that has happened to women since the dark ages.  It made me wary that they were seeing me as mentally ill. I wasn't.  

And remember i'm a nurse and midwife and i felt like this. For someone without a knowledge of disease and the medical profession how scary is it? Very.

Have any of you Lupies had similar dealings and experiences with the medical profession? 

My life before Lupus and things that led to me getting it

I'm going to give you a bit of backstory. Every good story needs one! As a nurse I can see now how I ended up with this pesky disease.

I was born in the North of England a very healthy 9 1b 2 ounces and a home birth. My parents live in the country. I was breast fed and spent a lot of time at my grandparents farm as a child. So my immune system should have been healthy. 

I was never out of hospital and my GP knew me very well. At age 2 yo I was in an isolation unit with amoebic dysentery. I got every childhood disease and was so greedy that I contracted rubella and measles at the same time. Holy moly. That is me, second from the right at the time of measles incubation! 

We were on holiday in North Wales with my best friend Janet and her brother Adam, next to me and my bro Gavin on the end at the left.

It may help to know that my dad is one of 9 siblings. He has 6 sisters whom all have anti-phospholipid syndrome and one aunty with MS. Auto immune disease is in my family. I'd never given it a second thought. All my aunties have had DVT'S (deep vein thrombosis), leg ulcers in their 30's and 40's, phlebitis and one aunty had multiple pregnancy losses like me. You never think it will happen to you. That was my dads family. My nanna and grandad both had leg ulcers, clotting issues with DVT but they had 9 kids!

At 13 yo I developed eczema and a latex allergy. I used to wash the dishes in my uncles pub (with rubber gloves).

At 24 yo I got hay fever. And kiwi fruit were not my friend either!

Then at 35 yo I got asthma.

Do you see where this is heading?!

Meanwhile my little bro and sis were formula fed, my sis hated the farm and they have no atopic or immune system issues. Oh yes I got the best genes in my family....not! 

I'm from a lovely part of Northern England called The Lake District (Cumbria is the county). Its where Beatrix Potter and Wordsworth lived. This is me sat in the doorway of Beatrix Potters' House. 

I used to do lots of mountain walking. We have the highest mountain in England, Scafell Pike and I climbed it as well as many others. I used to be very fit. 

Here's Coniston Old Man, another of my favourite mountains. Its a YouTube clip filmed by someone I know on Twitter, Paul Steele, The Bald Hiker. 

https://www.youtube.com/watch?v=eR_h9e5ctLY#t=33

I'm living my life vicariously through these mountain climbers. I can't quite see me doing any of this again!!!!

https://www.youtube.com/watch?v=eR_h9e5ctLY#t=33

In this lovely part of England we also have a Nuclear Reprocessing Plant called Sellafield (Windscale is the old name). Its about 100km from my village. It's at Seascale that red dot on the west coast of Cumbria. 

In the 1970's there were many radiation leaks, supposedly minor but I guess we'll never really know. I remember watching a documentary produced by World in Action. It was a TV expose series. There are clusters of childhood leukaemia's and cancers (non-hodgkins lymphoma's) from the 1970's and 14 times higher than the national average in Cumbria. Fourteen times!

Holy Moly!

http://www.dailymail.co.uk/news/article-1367776/UK-Government-covered-nuclear-reactor-blaze-caused-death-cancer.html

http://www.counterspill.org/article/read-great-articles-windscale-fire-nuclear-disaster

The next bit I'm going to tell you is really quite extraordinary.

Remember the holiday photo with me and my brother on holiday in North Wales with my friend Janet and her brother Adam. Janet developed SLE (lupus) at 11 years old when we were on girl guide camp together. She has been very very sick with it. I may get Janet to tell her story to you in the future. I think its important to get permission before doing so. BTW I have changed names to protect identities. 

We also went to a very small school in a village outside Kendal, Cumbria. The school had only 100 pupils. Another girl in Janet's year (one below me), Mandy also contracted lupus. Hers is more skin/cutaneous/discoid lupus. She can't go outside in any sunlight. Her car has special UV filtered glass and her house is in darkness. 

So there are 3 of us, all the same age from the same very small village who all have SLE (Lupus). I think they are very interesting stats. 

I also know of 2 others in my county. One I used to work with as a Midwife and the other I met by chance when I was home last time. I'm sure thee's many more.

It's quite a story isn't it?!

I'm really pleased I've decided to do this blog. I never ever thought I'd do it. But I am in remission for the first time in 9 years. When my disease was active there is no way I could have contemplated anything like this. Getting out of bed and getting to work was a big ask most days. Anyway that's enough for now. At least you've got the back story. It may help some of you to understand where your Lupus may have come from.

But there is a lot more to come....

Hello world I'd like to share my innermost secrets and how I survived Lupus (SLE)

Hello peeps! Or maybe this should read g'day. After all I do live in OZ.

Today is my very first blog post that is all about me and my Lupus.

I am finally in remission from Lupus or its' other big medical name, SLE, in full it's Systemic Lupus Erythromatosus. It's a big name I know.

I've had it for 9 years and it's been 8 very shitty years as I'm sure other readers with Lupus will agree with!

But hey I'm alive and I'm very much here.

I had this little brainwave over the weekend about writing a book about my journey and how I finally got myself well and into remission. And yes I've been bad, really really sick. But I'll tell you more as I get to know you all. Never tell too much on a first date! Right!?

So who am I?

I'm Lena, I'm 47 years old but I look so much younger! Vain much? Hell yeah!

I'm living in inner city Sydney. I'm self employed. I have a very busy small business. I'm a nurse and midwife.

I write fiction and non fiction. I'm self published on Amazon and yes the main character has Lupus. You should always write about what you know right?

This is me on the left with my little Sis, Lesley. I'm a proud aunty to 4. my sister has 2 kids as does my brother. I have none. More on that later.

I write another blog, non fiction about parenting. This is me, on this blog, the real me. I get to really share on this blog. Oh I'm excited, very. Why I didn't do this before I don't know. It makes perfect sense.

As time goes on I'll tell you more about my Lupus, my meds, how I got diagnosed. The whole complicated journey. The bit I'm most looking forward to is giving you other Lupies and your family and friends hope that just maybe....you may end up here like me. Living a full life. Yes I have some restrictions but I always find a way around things. I think that's crucial.

I thought I'd put this photo on to give you all a laugh. This is me aged 2 years old. I was addicted to picking chickens up. It was always Chickens 0 Lena 1. Poor chucks. My Granddad was a farmer in the North of England, which is where I'm from. It's in South Cumbria. The Lake District.

I know how hard it is for you Lupies to feel positive most days. How badly you sleep. How much you hurt everywhere. How you think it will always be like this. I hear you all. I understand.

I've been in the very depths of despair. I've been in hospital too many times. I'm trying my best to keep out of there this year.

Yes I take a heap of pills but a lot less than a year ago and much less than 4 years ago. I've been on as much as 50mg prednisolone. Today I take 1mg. One measly mg. I know I'm lucky.

For several years photos were banned. My face was like a belisha beacon. I know belisha beacon's are yellow but I'm a writer and so I'm allowed poetic licence!

Those of you from England will know what I mean! 

But you get the idea. It was very very round and very very red and I was rather overweight because of all the steroids. My weight has ranged from 58kg at my sickest to 90kg here, again also at my sickest. Neither a great place to be.

I told you I'm vain, very. I'm a Leo. My hair fell out when I was very sick. That for me was the worst thing. I'm on oral Methotrexate 20mg which I take weekly. I believe it's saved me. No I don't like taking it but we don't always like what is good for us do we? I'm no exception.

I'm so looking forward to sharing my story with you and helping you all achieve wellness. That's why I'm writing this. I believe in sharing and helping. I'm a nurse, remember! We can't help ourselves!!!

So I think that will do for today. Please share your stories and feel free to ask me any questions. I'm hoping this blog will help all you Lupies out there. I know there's a lot of us and we keep ourselves very quiet. I'm hoping to raise our profile and get us more help and support. Us writers are good at that.

Hope your week goes well and check in here again soon. I'm hoping to do 2 - 3 blog posts a week, Monday, Wednesday and Friday.

lenathompson.net