Another post, a lot of sadness has hit the Lyme Disease community of Australia yet again. How much longer do paitents with neuroborelliousis need to suffer in private, with no treatment nor help. Shame on the Australian Medical system and our government for allowing malpractice to quietly go on in this country for many decades.
For those grieving the loss of our fellow paitents please talk to someone if needed.
Sending out gentle hugs.
February is already upon us, kids have settled into school well and the Summer season is finally in it's last month. So looking forward to Autumn which is the promise of Winter being not far away. Our wedding Anniversary is upon us the 14th, I know Valentines Day but my husband said to choose a date he will remember bah hahaha. He will never forget that date. So to my bestfriend my ying to my yang nd for the past four years as my carer, Happy 18th Anniversary 💋💋
This month has been an emotional struggle for my worthiness to my family. Being terminally ill has put alot of strain on my family unit, it takes it's toll on each member of my family. They each say that they are coping but the cracks appear thru words unspoken or spoken, actions, moods etc. Then because I am too ill too be an active mother and wife, I start questioning my worth to my family. It is the silent issue within me. This month my mind drifts to anger and frustration as I live in "The Lucky Country, The Land Downunder" Australia. A first world country that has a third world mentality when it comes to treating Vector Bourne Illness.
On ACA on ch9 a man with MS spoke out to Australia, stating he choses to die with dignity as he no longer wishes to suffer his horrific illness, so he will be doing Euthenasia to shorten his life and end his suffering. I too have thought the same. And I have spoken to my husband and he empathises with my suffering but wants me to be strong and be here. Euthenasia is illegal in Australia also. So even though I think about my worthiness to my family and euthenasia as an option, for now it won't happen as I am hopeful Senator Madigan and the senate inquiry he has opened into Lyme like illness will be the change needed, so others and myself finally get the proper and basic treatment we need. Mr Madigan has worked closely together with the Lyme Disease Association of Australia and the Karl McManus Foundation to get acknowledegment for thousands silently suffering here. If this was upsetting and raw to read, I apologize but it needs to be told and bring awareness of this terrible malpractice that is going on in Australia. There are many other illnessess treated the same way and as n Australian, I am ashamed of our government allowing this to be tolerated in the 21st century.
Paitents like myself that suffer with Late Stage Neuroborrelious will never be cured but if we can get proper long term treatment we may be able to control or hault our symptoms and manage this horrific disease, if I sound angry, it is because I am. I have lost so much to being dibilated by this disease. My business, our home, our savings etc.
The Australian Health Deptartment need to be held accountable by the government for the mistreatment of thousands of Australians with Tick Bourne Disease. They have failed the community greatly, this will now pass on too the next generations of Australians and become an epidemic health problem to this country. Hoping for a positive outcome.
Enough on that topic. Let's ramble about happy things in life.
Crochet, this beautiful craft that brings me joy and is the only thing I have left to enjoy on my good days. I crochet sox and cowls for charity and on my good days attend a crochet club on a Wednesday near my home. This club is my only extra social event other than facebook lol. Who would have thought that a crochet hook and a ball of yarn can bring joy to my life. This craft is my therapy my sanity, it truly makes coping with my disease/illness easier. I really miss working, I was a passionate self employed Hairdresser, lucky to work from home. Now I am still creative but with yarn.
Our furbaby Bonnie is another form of therapy while I am home alone when everyone is out at school and work. Bonnie keeps me company and is a wonderful listener, we watch a movie or have a nap etc, she is mostly by my side. Having a family pet is truly a blessing. The kids enjoy her and share her at night time, she lyes on their bed snuggled into them just being present in the moment. A dog truly is mans bestfriend. She can even sense my fits/tremors/seizures, still unkown what they are but she warns me before they happen.
So my last rambling is invisable illness, when you see a person that isnt elderly using a shopping centre mobility scooter or wheelchair, take a moment to think before you assume anything. Society as a community these days need to become more connected and interact with respect not assumptions. Young adult members of the community need to disconnect from their mobile phones and re engage. People need too learn basic manners again, as it is becoming a violent, ignorant world these days.
Thanks for reading, it took me 5 hours to write it. Please excuse my spelling, grammar it is due to my disease my brain isn't what it used to be.
Blessed Be
