Another year on and being grateful

Hello peeps out there!

It's another year on and I thought it was time to say hello to my blog again! Life has been busy and the months have gone by.

I'm still in remission which is most excellent. I'm grateful, very grateful that I'm here. I'm not taking it for granted. I don't think you ever do when you've been in a deep dark hole you'd thought you'd never get out of.

It's Winter now in OZ and joint issues are always much worse at this time of year. The tin man has resurfaced yet again. After an hour of getting up I move much more freely.

I'm very conscious to keep myself warm, lots of layers and always socks. My hands are freezing cold as I write. I think it's time to put gloves on even to type! Gloves on but it makes typing much more tricky!! You can't use the track pad. Doh!! Irritating.

Health wise there's a couple of new challenges that I didn't invite along. My reflux has flared and I'm now on maximum meds for that. The irony of this is I'm such a foodie. I often wonder what will happen longterm. Will I end up with a feeding tube in my stomach or a central line and TPN (Total Parenteral Nutrition)? I think it's hard to have all this and not wonder where you'll end up as you get older. I try not to dwell on it as It's too depressing but now and then I dare to go there.

Something else that invited itself along for a free ride is awful sacro-iliac pain. It's got so bad this month that I can't bend over to feed my 3 crazy cats. I can kneel on the floor and feed them but I can't bend. It's frustrating and painful. Eventually I found a great solution, some catdishes from Alessi that have long cats tails as handles. Whoever created these is a genius :-)

Sometimes I politely ask my other half, Simon to feed them. He's very kind and will often do it. It's that first hour from getting out of bed that's particularly tricky. After an hour my flexibility improves.

It never crossed my mind that at age 48 I'd struggle to dress myself and put pants and socks on.

I've been reading too much Google (as I'm sure we/you all do) and decided that I've got AS (Ankylosing Spondylitis). I've got to go for an Xray and some blood markers this week. I'd rather know if it is this or not. Luckily my Rheumy agreed it was a good thing to rule out and she didn't roll her eyes at me! The pain is just horrendous and nothing like I've had before. Having Lupus you always have pain, oh and Fibromyalgia. The 2 go hand in hand. I long for the day I don't mention the word pain and I'm not popping the painkillers. It won't happen. Suck it up Princess.

My Rheumy gave me 2 huge steroid injection s into my sacro-iliac. It helped but only for 2 days. And I screamed and cried like a baby when I had them!!

The weekend has been challenging so I'm a bit negative today which is rare for me. Usually I can poke fun at any situation. The 'no children' thing hit me this weekend. It arrived like a bolt from the blue. I was attending an event as a sponsor and I ended up talking to a heap of mums who all had young babies with them. I felt left out, the odd one out. I'd not felt this before and it was really hard.

Also all my friends on Facebook had kids that were attending their prom's. Again it hit me. I was never going to experience this. Lupus has robbed me of my chance to have children. My disease was so unstable that I've got 5 Angels waiting for me in heaven. My day job revolves around babies and children, oh the irony. Usually I can put my personal stuff aside but not this weekend. I sat in the bathroom last night and howled until I had no tears left. It did feel better but it's something that I have to deal with constantly. I get asked all the time if I have children and then that's often followed by more probing questions. 'Did I want children?', 'Would I adopt or foster?', 'I'd make such a great mum'. It's like they're trying to make my life better, more complete. But they can't. If I had a child would I even be able to have the energy to care for one properly? I think not. So my writing and my business has taken over from the baby I couldn't have. It's my big sadness and nothing ever can heal that weeping sore. I've become a mad cat lady with 3 crazy fur babies. Does it compensate? No, but it helps. Those that have children will never know how this feels and thank you for trying to make me better...but you can't.

It's important to acknowledge these things that we didn't plan for. It's not nice having to 'go there' but I know if I don't I'll never heal. As I said before I'm grateful that I'm here and what I've got in life. And I know none of us get everything. Acknowledge the pain and emotional shit, move on and smell the roses. And be grateful that you can get out of bed everyday even if some days you can't put your knickers on!!

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!