All posts filed under: Disability

When our strength fails us and we crash.

What happens when we fall apart ? I noticed with me that life goes so fast but over the past 12 months things slowly were getting harder to manage. My tiredness was much worse my eating habits up and down and mood swings around. I was so tired I couldn’t fall asleep and I found my head racing round hours after hours then suddenly I had fallen asleep and my alarm would wake me for next dose of meds for A. I don’t even think adrenaline was even keeping me going. Seizures increased to daily over and over. It became so often it was the Norm. Fear increased with this. I tried to avoid the negative thoughts time after time but they were there sitting on my shoulder reminding me daily. It was like hearing a second voice. Love is why and what keeps me going. Last year was super challenging. Besides raising two sick kids and one declining so rapidly in front of me I’m also mum to teens. 19, 16 year olds. Learning …

Celebrating small victories

Today whilst having lunch with eldest daughter I realised what we were talking about wasn’t the normal kind of conversation many have. We stopped both staring at each other and just laughed and laughed almost to tears We were celebrating how wonderful it was that Ava had done a poo yesterday and the fact she had done it while sitting in the wheelchair. She has so many issues and pooping is huge: so eating san churros and talking poo seems fine: That’s the thing with chronic illness you really have a different level of what’s important and your priority list is fully different to a normal person. I also find myself joking inappropriately to normal people who don’t get the jokes we make at home- maybe we are all mental now living in such a highly stressful unpredictable life we all went crazy and make everything funny now. Well if that’s the case good shit I say! Rather laugh than cry …. I really think I swear a lot more to nowadays. I’m so over …

Me deleting myself

Well some close to me know that when things are tough for me I delete myself from all forms of social media. Recently I landed in hospital when away for the long weekend. I was in sever pain and was transferred to another hospital down south coast of Australia. Originally thought it was appendix but it wasn’t all I was told was they found a small tumour and to follow up with local doctor. Ok whatever what the fuck and discharged me. Anyway that day drove back home and still was having pain so booked in to Gyno. He had a available appointment the following day. I explained to doctor the pain and he did another ultra sound he said no that small so called tumour is a fibroid and it wouldn’t be causing you this much pain. He thinks it was a urine stone like a kidney stone. Anyway I trust this man and was instantly relaxed. Managing the kids while being sick was so hard. Then juggling stupid Facebook and Instagram I couldn’t …

So fuckerty fuck !!

Fuckerty fuck!! I am so run down at the moment. One thing people don’t realise is how it creeps up and bang knocks you for six. This year I have been running round doing a lot more than usual as I’m usually sitting next to Ava bedside in hospital. I have been racing round doing school drop offs, meetings, therapy, doctors, meds pick ups and swimming lessons and dinners and house hold crap and challenging teens and driving lessons and now after Ava’s last emergency admission two weeks ago I have a cough and cold. Poor me I say but tough shit no time for rest. Get those cold and flu tablets in you and keep going. I feel so old at the moment. 38! So exhausted to the point I can’t fall asleep. I have found that even at 3am if I’m laying in bed I grab a book and read. It’s helped me a lot. See I never find time to read for leisure. I even managed to Finish the 350page book woohoo …

2018 a new year

Hello 2018 We welcome a new year fresh with positive vibes and good thoughts. Last year was so hard and we didn’t get to update. We finally had spinal fusion two rods and successfully got through it / 8 days on life support before we decided to breath on our own and 6liters of blood loss but all good. Hips redone and bones healed. Epilepsy on the other hand has been the naughtiest !!!! Daily seizures. And a new non convulsive status we hadn’t seen which was happening almost daily – very frightening but thankfully at the time we were in hospital. It was one of the main reasons spinal surgery was cancelled three times plus the lovely melena – internal bleeding we seem to get. Since the last bleed I decided to change things myself. I took her off omeprazole and changed her to infant formula A2 milk I had been reading up about long term ppi use and how it actually can cause bleeds. Anyway after a month we had a review and …