Fibromyalgia is a bitch

Things were really good with my health, life, the universe and everything...until last December.

Like a lot of people with fibromyalgia I'd been on low dose endep, a trycyclic antidepressant (amitryptilline) for fibromyalgia pain for the past 10 years. It had been keeping things in check. Then I developed a big problem with a totally dry mouth at night and my teeth were dissolving. Disaster. I had no choice but to come off it. I went to see my GP and she decided that Lyrica was the next drug of choice.

https://www.lyrica.com/fibromyalgia 

I spent 3 months trying to acclimatise to Lyrica and I got some beastly side effects. The worst being blurred vision and seriously unhappy gut and diarrhoea. YUCK!

I started off on 25mg and ended up on 400mg and yet it wasn't working. All I felt was 'fuzzy' so my GP decided it was time to come off it. Little did I realise that coming off Lyrica is like coming off heroin.
OMG!! It was vile. My gut reacted, my body withdrew and I stopped sleeping. It was like a switch had been turned off that stopped me going to sleep. It was horrendous. I knew that if I wasn't sleeping I was likely to get a flare of lupus and the whole thought of that sent me into a tailspin. These are things I wish I'd known before I started Lyrica. Hindsight is a noble thing.

And it gets worse...The Australian government has decided that codeine based painkillers were discontinued as an over the counter prescription. And as a result my GP decided I was coming off my codeine based prescription painkillers too. WTF!! 

https://www.racgp.org.au/download/Documents/Guidelines/Opioid/12Point-Challenge.pdf

This has become political.

People like me are described as Chronic Non-Cancer Pain and basically if we take more than 100mg of opiate equivalent a day we are to be tapered off it. WTF. 

This has all come about because people are taking over the counter codeine/using too much/overdosing and this is impacting us chronic pain lupus/arthritis/fibro people. I'm feeling rather cross about the whole crazy situation. I can't take NSAID as I have reflux and asthma so my options are limited.

I know I'm not an addict because I've never taken more than 2-4 x 30mg codeine tablets a day. I take them mainly at night to sleep and 6 weeks ago I have taken myself off them completely. However since then it has been HELL from a sleeping and functional point of view. I'm sliding back into active lupus and fibro flare and my fibromyalgia is at an all time low point. 

I'm taking herbs and supplements approved by a naturopath, including turmeric, white willow bark etc. and I'm using a TENS machine to distract myself in the day. However, trying to sleep is HELL. Anyone out there who has had chronic pain, fibromyalgia, lupus, arthritis will understand what I'm saying. Do any of these politicians who make these policies really understand what it is like to try and live with this???? I really don't think so. 

https://fedupwithfatigue.com

My GP wrote my a referral for the pain clinic at the hospital and a Psychologist who specialises in CBT (Cognitive Behavioural Therapy). At this point I was totally brow beaten so I took my referrals and left. I certainly don't have depression or anxiety despite what I've been through.

https://www.racgp.org.au/your-practice/guidelines/upscheduling-of-codeine/

https://med.unsw.edu.au/news/codeine-related-deaths-double

So now I feel I'm back where I started with fibromyalgia 12 years ago and I've fallen in a rather painful heap. Fibromyalgia is like a living hell. You're in constant pain, you don't sleep well and I'm sometimes in such pain that I don't sleep till 3am. It literally drives you demented. I'm an active person, go to pilates and hydrotherapy and run a busy small business. 

The medical world has failed me so I have to no choice but to explore the natural complementary route. I'm hoping my naturopath has found the lightbulb factor because I'm really at the end of the road. She thinks I've got a histamine intolerance. It's symptoms are similar to a food allergy and involves the mast cells. I'm embarking on a low histamine (boring) diet for 3 months and getting my DNA tested. 

https://www.histamineintolerance.org.uk/about/

https://www.histamine-sensitivity.com/histamine_joneja.html

Other things I've researched that I'm giving a red hot go are....and btw it's a long list!

• Norflex 100mg x twice a day - muscle relaxant 
• Vitamin D 2 capsules a day
• Magnesium - high dose at night x 1
• Turmeric 1 capsules x 2 x a day
• Quercetin 1 capsule x 3 x a day - has antiinflammatory properties
• D-Ribose
• Bioceuticals pain relief - White willow bark 40mg, skullcap 10mg, black catechu (stem heartwood catechin and epicatechin 21.6mg), kava root 20mg 1 capsule x 3 x a day
• Devils Claw Root 1 capsule x 2 x a day
• Red clover tea infusion 2-3 cups a day

This is on top of all my other meds for lupus, high blood pressure and reflux! And I take fish oils 10g a day. 

I've also heard epsom salts help and low dose naltrexone...

http://www.drliptan.com/blog/2017/11/21/lessons-learned-on-opiates-and-ldn-for-fibromyalgia

https://www.healthrising.org/treating-chronic-fatigue-syndrome-mecfs/drugs-for-chronic-fatigue-syndrome-mecfs-treatment/low-dose-naltrexone-ldn-fibromyalgia-chronic-fatigue-syndrom/

My other friends are a foam roller, a spiky massage ball and a yoga mat. I'm hoping all my research and hard work is going to help me, everything crossed.

Until next time...hasta la vista baby...

How I managed to stay in remission with lupus

I hope you've all had a really good Christmas and a rest.

In my last blog - June 2016 - I wrote about a speed hump and a lupus flare albeit a mild to moderate one. And boy did it give me a reality check. I never ever take remission for granted. Those of you who have read my whole sorry tale of my lupus journey will understand why. It's been a rollercoaster of 12 years. 7 years of methotrexate (chemo), a brain haemorrhage and neurosurgery and gut vasculitis to give you a few of the lowlights of what lupus has meant to me.

I've achieved remission again. Before I went away to the UK I was working ridiculous hours and I paid for it. I had a month of lupus flare. Tsk tsk.

Oh I was PISSED. 

To get myself back into remission I had to sleep. I've learnt that much from the last 10 years. The thought of going back to the UK for 3 weeks and getting sick scared me a lot. So I set to and did 10 hour night sleeps and a 2 hour nanna naps in the day. Which left little time for anything else. The irony of my life as a baby whisperer, where I look after sleep deprived mums and get their babies sleeping too. 

I was so terrified of going back on the methotrexate and starting off gut vasculitis.

When you've been in a very dark place you never ever want to go back there ever again. In the past I'd had to take 7 months off work to heal myself. Shocking. Have a read of this blog and you'll understand my fear.

https://loopylena.blogspot.com.au/search?updated-max=2014-05-28T00:54:00-07:00&max-results=7

It's taken me 2 months to complete this blog bahahahaha says the time poor girl laughing hysterically ;-) as usual work has overtaken my life. It's now 28th December and Christmas has been and gone and it was my usual low key affair at home, with my significant other and a new cat! Yes I am officially a mad cat lady with 4 cats ;-) and very happy with them all. My newest one is Ziggy a 11 month tuxedo boy and a rescue from the RSPCA. I'm finishing off a non-fiction book so I felt it was a purrfect time to get him. 

Here he is in all his loveliness, Ziggy.

My lupus is still in remission but not all is rosy unfortunately. I've got hypertension and it was at 160/110 and I'm now on maximum of one antihypertensive drug (Micardis Plus 80/20) and I got prescribed another (Zanidip 10mg) but had a big side effect so had to stop after just one day! I went food shopping on Christmas Eve and had a fainting attack in the fruit and veg section of Coles. DOH!! So found a GP in the shopping centre to get checked over. My BP had dropped to 120/90 and that was 30 mins after the event. Luckily my significant other was helping me with the shopping so I could go home. The thought of an ambulance trip and hospital stay over Christmas wasn't a great thought. So it's back to the GP next week and a look at these antihypertensives and my BP. I had noticed my feet and ankles were becoming a bit 'fat' and swollen but I just figured it was the heat as we've had some shocking 38C days this month in OZ. After taking just one dose of the Zanidip I know it's not the heat. 

Back to book writing I go and a bit of cat stroking in between...

Another year on and I've hit a speedhump :-(

Hello blog, my long lost friend. I've missed you longtime girlfriend :-)

I've not visited this blog for a year as my business world went mental. As a result I've hit a speedhump and had a blip with my lupus. Grrrr severe gnashing of teeth follows. Oh it gets me so cross. It sneaks up behind me and gives me a bite on the bottom just to remind me it's still there.

Oh I feel much better for that giant ROAR. 

So what has happened this past year? I've just self published my 2nd non-fiction book. Not a mean feat I know. Slightly over achieving. Bahahaha

Health wise there has been the usual mini drama's but nothing I felt like sharing till now! The sacro-iliac pain improved as did my ability to put my own socks and knickers on!! Thank goodness. It got so bad at one point that every time I turned over in bed I was shouting out in pain. Following a sub-total hysterectomy things dramatically improved. I've never been so happy to have a body part removed. I was really frightened of a major meltdown and it never happened. Somehow making that decision, and in the end I forced it because life was so intolerable, helped me move on from the what ifs of children to a whole new chapter. I was able now to pursue other things in my life. I actually feel liberated. Doesn't life surprise you at times?

Then next came the wisdom teeth...I'm still shuddering at that one. I got an infection post op and it was the single worst thing that has ever happened to me. No kidding. Those of you who have read my previous blogs will know that what I'm saying is BIG. However I have survived. For 3 months it was pureed food. Revolting. That experience has taught me nothing good. And I paid a freakin' fortune, went private and trusted the oral surgeon with my life. 

Anyway I must move on. It's not healthy to dwell on negative experiences.

So where am I now? I'm off to the UK in a few weeks and it's the big birthday and I'd like to go back well if I can. So I've got a decision to make. Do I go on Methotrexate or tough it out? I think I'll do a blood test first and see how bad things are. 

Oh lupus you are so mean and not a good friend but somehow you keep hanging around even when I've unfriended you.

But hell I'm ALIVE and being alive is good fun. For a girl with such a badly behaved form of lupus I've even surprised myself. 

I've gone from this 8 years ago....

To this just recently

Remission...how good does it feel!?!!

Well hello and a big Aussie G'day to you all. I hope you've all had a great week.

I'm fast forwarding from my last post nearly 3 years. Yes it's been 3 years since the brain haemorrhage. Amazing. A lot has happened in that time and you'd never know by looking at me that I'd been through all this health debacles with Lupus. I always say that whatever doesn't kill you makes you stronger!

I know how hard those bad days are. I remember saying things like, 'Dying must be easier than this!!!' The pain I was in with my gut vasculitis really drove me to the edge of what I could deal with. It was bad, very bad.

But then I'm in remission now. It feels like such a long way away that all that bad shit was happening.

I hit remission over a year ago now. It feels great but I'm not getting above myself. It could come back. Lupus is a chronic autoimmune disease. There is no cure. You live with it every day.

This is me on the left, taken a month ago on my birthday. I'd hit the big 48!!!

I went to see my Rheumy the other day. BTW don't you just HATE Drs appointments. It's a reminder that you are on a knife edge and it could happen again. I had a flu vaccine in May this year and OMG was I ill for 2 weeks. It was like I was having a flare again. It was so damned scary. I had a headache that was nearly as bad as the brain haemorrhage for 2 days. Nothing relieved it. It was like encephalitis. I was photophobic. The joint pain came back. I was in bed and had no energy. Then it just went. My liver function tests have been really up and down for 3 months. The option of stopping Methotrexate came up because my CRP and ESR are normal which means no active disease. I'm not brave enough to stop it yet. Some of you will understand that. I hate the chemo drug I really do but when you've been soooo sick you don't want to risk it either! Arrrggghhh!!! I drive myself mad at times! Maybe soon. Its crazy I've gone from the no drugs at all mindset to the security blanket of them!!!

In my work life I'm such a risk taker. I run my own business. I'm ridiculously busy and I'm writing 2 books. Yes I'm not content with doing one book at a time!!! When you love writing it seems very sensible to write 2 books and and 2 blogs.

Today I'm having a lazy Sunday. I'm still not dressed and it's nearly midday. That's how I balance my life out. I'm lucky that my 2 cats are fairly undemanding. Simon my partner lets me do my thing and I write.

Life is good...

How writing saved me from Lupus

G'day again, you're back. Hello, its so nice to see you. You're going to love todays blog. And I'm giving something away for FREE. 

I'm going to take you forward 3 years after all of that yuk stuff. Theres a lot of fun stuff in my life and probably more fun than not. I'm a glass is half full girl :-)

I had started writing a few years ago but got derailed by my lupus. When I'm in active disease I lose all my creativity. Just getting out of bed each day is a big ask.

Then I landed well and truly on my arse. I walked out of my job. It was either the job is going to kill me or I have to walk away. I was a nurse working in outreach, visiting child protection cases and clients with severe mental health issues. I'd had one bad child protection situation too many and I was done. Burnt out, spat out and i was empty.

So I had no choice but do 7 MONTHS of bed rest. Yes holy moly. Seven freakin' months!!! I'm very much a busy busy busy doing everything all at once girl. So for me to have to take 7 months off just freaked me. I had no money. I had no prospects but I had Simon and we had love. And I still had a brain and a mouth.

I was exercising and going to hydrotherapy twice a week. However it was the balance in my life and getting the toxic stress out of my body, through the words making their way onto the page, that made all the difference.

I belonged to a writing group of whom 2/3rds were published authors. They'd all been to Uni and done a creative writing course. I learned so much from them. They encouraged me and have made me the writer I am today.

I went to the cinema 3-4 times a week. I totally indulged my creative side. 

I had 2 cats, Tabitha & Trim who sat at my feet on the bed. It was the only place I was comfy. Pain was a big issue. I had fibromyalgia by now and was on Endep. I'd had bursitis in my hips so many times that I was walking like an old lady. Sleep was a nightmare.

So I put my laptop on my knees and put pillows all around me and I wrote furiously. And within 3 months I had written a book. A work of  adult fiction. It was loosely based on some critical incidents at work. I'd set it in Sydney. My main character has Lupus. Don't they always say to write about what you know?!! It's a Psychological thriller with some voodoo/occult themes. Yes its dark but it's true to life. You'll like the lupus bits. I really go for it, no holds barred.

I've already sold many copies on Amazon which has totally amazed me. It's now available again for FREE to download and read. You don't need a kindle. All you do is download the Kindle App onto your PC, iPad or whatever electronic device you use. And it's on special offer for the next 5 days including today.

http://www.amazon.com.au/The-Shaken-Cradle-Lena-Thompson-ebook/dp/B00G8TQCYU/ref=sr_1_1?ie=UTF8&qid=1400395493&sr=8-1&keywords=the+shaken+cradle

All I ask is that you leave me a review once you've read it. Thank you so much. It means so much. Please share this post onto Facebook, your other social groups, Pinterest, Twitter etc. 

But most of all I want all you Lupies out there to realise that anything is possible. You can do it too. And I must add a caveat that I know will make you gasp!!! Two thirds of the way through my book I had a MASSIVE BRAIN HAEMORRHAGE!!! Yes, really. It was the biggest they've seen with no deficit. I really am the cat with nine lives.

Enjoy reading the Shaken Cradle by Lena Thompson and I'll see you all again real soon XX 

What every girl needs, a knight in shining armour!

You know when you're at rock bottom and you feel like shit. I'd survived my marriage break up but it had left a big toll on me. If you marry for love, which I did, you don't get to escape it unscathed. 

The thing that really got to me was my wedding vows.

For better for worse
In Sickness and in health...

Now I couldn't get my head around what gave my husband the right, to not cope with my Lupus and just walk away, because life just got that little bit tougher.

Yes I was mad. Hell yes. In fact furious doesn't even come close.

I vented, I ranted, I swore. This was all down the phone...at him. And no he didn't put the phone down on me! It was a strange case of self-flagellation. Hell it felt good, damned good. He kept saying that he deserved to hear all of this. So I let rip. I'm a writer. I have a lot of words. These were words I'd been saving up over 7 long years of marriage and 9 years together.

Once I'd been heard I knew I could move on. I felt validated.

The next step was to see my GP to organise some counselling. This stuff in my head had to go somewhere and keeping it inside was just toxic.
For a non-American I can thoroughly recommend a bit of therapy. I knew I had to keep myself functional to do my job, helping and supporting new mothers and their families.
I couldn't write at the time. I was just too screwed up. Now I write to keep myself ticking over. Its my regular MOT/ car service if you like!

The first thing the psychologist said was," You must never go back to him...NEVER...have you heard me?!"

I was stunned. But you know she was the wisest woman and I needed to hear those words. 

This was my first step to health.

Remove all toxins from your life. I was on the road...

So I kept up with 6 sessions of therapy. Kept at my day job. Moved 2 students into my rented house with the OK of the landlord. I had to sort the practicalities out like money too. Having nice people around and my lovely cat really gave me the mood shift I needed. Living alone was really the worst thing. And y'know sharing was ok. I got to choose my tenants and I can spot a crazy nut job at a thousand paces. I needed calm and a little bit of different.

Then I thought dating, shall I or shan't I? I was really nervous and managed to pick up a real dip-shit on my first attempt. Having dumped him once I realised, he became slightly psychotic/stalkerish and bombarded me with text messages. Oh I picked a 'right one'!!!

No more dating sites. 

Then on a night out, at a pub (The Clock Hotel) in Surry Hills, with my fellow housies there he was...across the room in the pokies!!! I kid you not. I was giving a big lecture on how bad these pokies were, how they were the scourge of modern Australian society. I was in total soapbox social worker mode! His mate had just put 5 x $50 in and had wedged the start button with a drinks coaster. And he blew all of it in seconds.

I'm not going to give his real name as he asked me not too! He's shy (not) in an Australian way. So I'll call him Hugh (as in Jackman)

or maybe Russell (as in Crowe)

or Simon (as in Baker). Oh too many hot Aussie man....I'm going with Simon :-)

Simon took me and my house mate, Kathy down to Bondi Beach for a day of sand, sea and surf.  I covered myself in Factor 50, slapped on a hat and had fun. 

The next week we had a date at the pictures and 2 months later I moved in to his apartment in Sydney. It was as easy as that. When things are right they just happen and we're here together 8 years on... Eight awesome years that have ridden the roller-coaster that is my life and Lupus. And today my life is good, awesome and amazing.

Yes I have my bad fibro days and I'm in pain every day. Some days better than others.

But I've learnt how to pace myself. Simon doesn't ask too much of me. He loves me writing, loves my cooking and basically loves every bit of crazy, eccentric me.

Don't give up on the Knight in Shining armour. You may find him where you least expect him just like I did.

See you back here real soon. Hope your week is good and your pain days are few <3 Sending hugs from OZ XX

My marriage break up & a knight in shining armour just around the corner...

Just when you think it can't get any worse! Ha famous last words...it does.

I'd started on Imuran (Azothiaprine) to try and blast my immune system into behaving itself. My life was in a toxic wilderness. My marriage was going downhill fast. My husband was so unsupportive it wasn't funny. The irony was that I was living in an emotionally abusive marriage and yet I was a nurse who empowered mothers who were going through the very same thing.

My writing was on hold. My headspace was all wrong and I had no spare spoons to do anything like write a book with.

I decided that the husband had to go. It was either do that and maybe live or keep him and maybe die. It was that bad.

Any marriage break up is awful, heartbreaking and destroys a little bit of your soul.

Little did I know what was to arrive around the corner.

When you've hit rock bottom the only way is up.

I had a great work colleague, Anna. She was a diamond. I kept all these things a secret from my other colleagues and my clients. They didn't need to know. I even kept my wedding band on my finger, removing it as soon as I left the office for the evening. I didn't need anyone asking me any difficult questions. It was hard enough keeping myself together to arrive at work and do my job. But without work I had no money and I had no family in OZ. I had no choice but to carry on.

I got so sick that my weight plummeted to 58KG which at 172cm is way too skinny.

My hair fell out. I had bald patches on my head. That was the thing I found the hardest. I'm a Leo. I have a mane. It's my crowning glory. Not now it wasn't...

One day I was doing a visit to weigh a new baby at a clients apartment. I'd got into the lift and gave my appearance the once over in the mirror. It was then that I saw a massive bald spot, shining in all its glory. I gasped in shock.

I bought scarves and headbands and tried the boho 60's/70's look. It helped but I still knew the bald spots were there.

Outside work I was just surviving. My bed was my favourite place and I'd started smoking...a lot. Probably one of the worst things I could do. I couldn't drink so it was my go to.

Eventually after a crappy Christmas and New Years Eve, spent alone and wallowing in my misery and cuddling my cat, Starsky. My cat was my life saver. She knew when I was sick and curled up on the couch and bed with me. We survived a 45C New Years Day on the couch/floor with a fan in front of us both shouting/moaning/miaowing as our thermostats had given up on us. Me because of my Reynauds', Starskys' because she has a lot of fur.

Little did I know then, but in February, a Knight in Shining armour would appear!

Refusing to take prednisolone (steroids) was one of my big mistakes

Hello again, nice to see you back here again. 

I hope you're all having a good week and you Lupies and Fibro people are all being extra kind to yourselves and getting some sleep.

As you know by now I'm a nurse. I have Lupus and Fibromyalgia and a heap of other diagnoses. I can't tell you all at once. It's way too big. Things that have happened to me belong in the rare basket. I've always been somewhat of a drama queen so it fits in with me!

BTW my mum is now reading my blog so must keep my potty mouth to a minimum. Teehee. Hello mum XX

As you may recall I was really sick and my ANA was 1:1280 on diagnosis. It doesn't get any worse than that. My sensible Rheumatologist advised me to start steroids to get my disease under control.

I refused point blank.

I'd seen my friend 'Janet' who also has Lupus and what high doses of steroids had done to her and I didn't want that to happen to me. D'oh that was a really stupid decision. I'm a very determined sort of girl. Some may call me stubborn! We don't always know what is best for us and I certainly didn't. I have improved at that since. Now I'm on first name terms with my local pharmacist. We know each other very well. I'm there several times a month. He sends me a Christmas Card.

I agreed to take a NSAID Celebrex (non steroidal anti inflammatory). It didn't do very much at all. Pain was a huge issue. My sleeping was badly affected. My disease escalated to such an extent that every time I rolled over in bed at night I would wake up. I couldn't lie on either hip or even on my front or back. I was a basket case.

We (me and my now ex husband) moved to Sydney for work. His job had ended with redundancy. I was the bread winner. I started working at a huge teaching hospital on Postnatal and Antenatal as a Midwife. And I wasn't sleeping.

I got sent to see the Occupational Health Doctor. He was amazing. He referred me to a Rheumatologist. I got an appointment within a week. He gave me pain killers...MS Contin 15mg SR to take twice a day. Yes this was morphine, a controlled drug. I had to take it to sleep. No other pain relief had any effect at all.

http://www.dailystrength.org/c/Lupus/forum/14267148-hip-bursitis-pain

I was horrified at my decline. I had steroid injections into my hips, both of them. They hurt like hell. But they fixed my bursitis. I've never experienced pain like it. Bursitis is hideous. My left knee was swollen and that knocked my hip out which created the inflammation of the hip socket.

http://www.lupus.org/answers/entry/joint-muscle-pain-in-lupus

I had to start steroids. My blood results were awful and I was told letting this disease take hold was disastrous. I was started on 20mg of oral prednisolone and not long after I was started on Immuran (Azothiaprine). It helped and my pain was slightly less but I still had very active disease.

It was about to turn very ugly and my life was really in the balance.

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