I'm immobile, please help me move!
Donation protected
In August 2014, I was diagnosed with a degenerative spinal disease. I was forced to stop moving, or cause greater damage, and I spent a great deal of money on specialists and on alternative medical options, but told that there was little that they could do. The disease is causing my discs to bulge, then herniate and crush. My L5/S1 is completely crushed, with the fluid and bone from the disc pushing against the nerves that control my left leg and gathering in my spinal column against my spinal cord. My L4/L5 disc is also bulging, however it isn't causing any problems yet. After many consultations, I was told that they could do nothing for the pain other than pain management (pain medications), however they could perform a micro discectomy to try and relieve the pressure on the nerves in my left leg. The goal of this was to stop the constant and painful spasming of my sciatic nerve and muscles, give me back the feeling in my left leg, and hopefully give me back some of the control I had lost in that leg.
I had the surgery in February 2015, and in the months to come it became apparent that it had made things worse. The neurological damage to my left side is permanent, and on the right side, any movement causes to two spinal bones to grind together causing extreme pain.
Where does that leave me? I am unable to walk more than approximately 100-200mtrs. I will be in a wheelchair for the rest of my life. Yet sitting also causes incredible pressure on my spine, so I am mostly confined my bed, laying flat on my back. I require full time care, as I am unable to wash, dress, drive, cook etc. and this is something that mum has thankfully taken on by herself without complaint.
As you can imagine, the emotional ramifications of this have been just as horrible as the outcome of the disease. My mind seems completely incapable of processing the new parameters and limitations of my life. I have been, and am still, an emotional wreck. My medications keep me either asleep or dazed. They have affected my short term memory, causing me to forget conversations or to repeat myself over and over, and without antidepressants and anti anxiety medication, I feel overwhelmed by a terrible rage at everything that has been stolen from me, and lash out uncontrollably, in anger.
The medications have their own dangers. The side affects are destroying my digestion, I am unable to control my bladder or bowl movements, they are having a negative impact on my liver and kidney functions, are harmful to my heart, and they are highly addictive. This means that if I miss any dosage, within hours I go into physical withdrawals that are similar to someone with a heroine addiction. I begin to vomit uncontrollably until I can be admitted to hospital and have them inject me with the opiates my body can't swallow and keep down.
This has very little affect on my daughter Emma. She is doing amazingly at university, studying Para-medicine, has a lovely partner who she volunteers with at their local SES, where she is the lead trainer in the Sydney Metro area in flood rescues, and is the Public Relations Officer for her unit, with the responsibility of dealing with the media whenever required. She is also working part time and along with her swim training is part of an Ultimate Frisbee team (have no clue what that is, but she loves it). I couldn't be more proud.
Joshua however has a front seat to all that is going on with me. We immediately got together with his school and have been working as a team to keep things as normal as possible for him, however he is a very emotional and empathetic child, so there is no pretending everything is all glitter and rainbows. Mummy has no income, so he has had to come to terms with going without the things he wants, and accepting the things he needs....sometimes going without those things too. Then there are the times he forgets to put things away or do his chores, and mummy is screaming at him for no reason, where before she would calmly explain why it is important to do these things and if they aren't completed, he would lose his privileges to things like the television or his video games.
Grandma is not exactly a picture of health either, having to have a stent put into her heart in April, then her diabetes getting worse and being forced after 30yrs to go onto insulin injections. Lifting, bending, and moving me is not helping her back, so she endures her own pain at times. She has now been ordered by her doctor, "No lifting!". So she is now unable to take me places as she can't lift the wheelchair in or out of the car. This means that rather than mum caring for me, a very sweet little 12yr old boy is forced to take over. He does so with responsibility, respectively, and with a maturity well beyond his years. Yet the guilt I feel is immense. I feel like I'm sleeping through his life, while he parents me!
When I can't speak or am so upset I can't stop crying, he gently lays beside me, playing on his iPad or reading a book, or simply holding my hand. He holds me and tells ME it will be ok - because we are together. He helps with the chores I can no longer do, and has made it his mission to make me laugh. And he does. Despite all that is happening he has taken it in his stride and just does what is needed. I have no idea what this will all mean for his future, but I worry that he will be trapped into a life of caring for me.
I don't know what the future holds for us. I know it certainly isn't the one I imagined. I worked so hard to provide for the kids, to overcome the negative choices made in my 20's, and felt that the future I had been working for was within my grasp. That is impossible now, and trapped within these walls I feel forgotten and insignificant. Being in public is even worse. In my chair people avoid eye contact, and people who know me don't know what to say, and quickly make an escape. My constant mantra is "my spine is healthy and strong, and able to support me in all that I do", but I know you have to truly believe for it to work, and the pain, depression, and medication make it difficult.
I wish this was as positive and empowering message. I am strong and have overcome so much, but I don't know if I have the strength to overcome this. I do know that I can't on my own. I really do hope that I can find the strength to come to terms with my new life and a way to live within these new limitations and parameters.
Yet, there are things available that could change my life! An electric wheel chair, moving to a house without stairs, a van with a lift or ramps that allows me to simply roll the chair into it, even a higher bed that I can easily get out of...the list goes on, but requires funds that I no longer have.
I know that everyone is on a budget, trying to make it week by week. I would never ask for help if we weren't in crisis. Even a small donation could help me to change our lives for the better. So whatever you feel you are able to help with will be greatly appreciated! Also, please don't forget to share this on your own time lines. The more people I can reach, the more chances there are of finding someone who can help! Thank you for taking the time to read my story. Blessings to you all, Stacey Mac.
I had the surgery in February 2015, and in the months to come it became apparent that it had made things worse. The neurological damage to my left side is permanent, and on the right side, any movement causes to two spinal bones to grind together causing extreme pain.
Where does that leave me? I am unable to walk more than approximately 100-200mtrs. I will be in a wheelchair for the rest of my life. Yet sitting also causes incredible pressure on my spine, so I am mostly confined my bed, laying flat on my back. I require full time care, as I am unable to wash, dress, drive, cook etc. and this is something that mum has thankfully taken on by herself without complaint.
As you can imagine, the emotional ramifications of this have been just as horrible as the outcome of the disease. My mind seems completely incapable of processing the new parameters and limitations of my life. I have been, and am still, an emotional wreck. My medications keep me either asleep or dazed. They have affected my short term memory, causing me to forget conversations or to repeat myself over and over, and without antidepressants and anti anxiety medication, I feel overwhelmed by a terrible rage at everything that has been stolen from me, and lash out uncontrollably, in anger.
The medications have their own dangers. The side affects are destroying my digestion, I am unable to control my bladder or bowl movements, they are having a negative impact on my liver and kidney functions, are harmful to my heart, and they are highly addictive. This means that if I miss any dosage, within hours I go into physical withdrawals that are similar to someone with a heroine addiction. I begin to vomit uncontrollably until I can be admitted to hospital and have them inject me with the opiates my body can't swallow and keep down.
This has very little affect on my daughter Emma. She is doing amazingly at university, studying Para-medicine, has a lovely partner who she volunteers with at their local SES, where she is the lead trainer in the Sydney Metro area in flood rescues, and is the Public Relations Officer for her unit, with the responsibility of dealing with the media whenever required. She is also working part time and along with her swim training is part of an Ultimate Frisbee team (have no clue what that is, but she loves it). I couldn't be more proud.
Joshua however has a front seat to all that is going on with me. We immediately got together with his school and have been working as a team to keep things as normal as possible for him, however he is a very emotional and empathetic child, so there is no pretending everything is all glitter and rainbows. Mummy has no income, so he has had to come to terms with going without the things he wants, and accepting the things he needs....sometimes going without those things too. Then there are the times he forgets to put things away or do his chores, and mummy is screaming at him for no reason, where before she would calmly explain why it is important to do these things and if they aren't completed, he would lose his privileges to things like the television or his video games.
Grandma is not exactly a picture of health either, having to have a stent put into her heart in April, then her diabetes getting worse and being forced after 30yrs to go onto insulin injections. Lifting, bending, and moving me is not helping her back, so she endures her own pain at times. She has now been ordered by her doctor, "No lifting!". So she is now unable to take me places as she can't lift the wheelchair in or out of the car. This means that rather than mum caring for me, a very sweet little 12yr old boy is forced to take over. He does so with responsibility, respectively, and with a maturity well beyond his years. Yet the guilt I feel is immense. I feel like I'm sleeping through his life, while he parents me!
When I can't speak or am so upset I can't stop crying, he gently lays beside me, playing on his iPad or reading a book, or simply holding my hand. He holds me and tells ME it will be ok - because we are together. He helps with the chores I can no longer do, and has made it his mission to make me laugh. And he does. Despite all that is happening he has taken it in his stride and just does what is needed. I have no idea what this will all mean for his future, but I worry that he will be trapped into a life of caring for me.
I don't know what the future holds for us. I know it certainly isn't the one I imagined. I worked so hard to provide for the kids, to overcome the negative choices made in my 20's, and felt that the future I had been working for was within my grasp. That is impossible now, and trapped within these walls I feel forgotten and insignificant. Being in public is even worse. In my chair people avoid eye contact, and people who know me don't know what to say, and quickly make an escape. My constant mantra is "my spine is healthy and strong, and able to support me in all that I do", but I know you have to truly believe for it to work, and the pain, depression, and medication make it difficult.
I wish this was as positive and empowering message. I am strong and have overcome so much, but I don't know if I have the strength to overcome this. I do know that I can't on my own. I really do hope that I can find the strength to come to terms with my new life and a way to live within these new limitations and parameters.
Yet, there are things available that could change my life! An electric wheel chair, moving to a house without stairs, a van with a lift or ramps that allows me to simply roll the chair into it, even a higher bed that I can easily get out of...the list goes on, but requires funds that I no longer have.
I know that everyone is on a budget, trying to make it week by week. I would never ask for help if we weren't in crisis. Even a small donation could help me to change our lives for the better. So whatever you feel you are able to help with will be greatly appreciated! Also, please don't forget to share this on your own time lines. The more people I can reach, the more chances there are of finding someone who can help! Thank you for taking the time to read my story. Blessings to you all, Stacey Mac.
Organizer
Stacey Mac
Organizer
Katoomba NSW
