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.
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!!
