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- Member
Sun Dec 11, 2011 1:15 pm
Hi there, 
I am feeling quite low today and realised I have no one to offload to.
When something bad happens then people sympathise, but when bad things keep happening people don’t know what to say, and then they start avoiding you.
In order to keep my friends I stopped telling them about my life, I am the picture of positivity.
But at the end of the day I am only human and I really do need a whinge once in a while.
I am new here so perhaps I should start at the beginning which is back in 2005.
My partner and I were your average couple, both worked hard, had a mortgage, etc. Then I found I was pregnant which we were over the moon about as I was under the impression I couldn’t have children.
My partner’s health at that time started to deteriorate. He had chronic back pain which he had kept under control for many years with strong painkillers. The pain was becoming uncontrollable and he was struggling to walk.
My pregnancy ended in the 5th month for no known reason, our son was born weighing 1lb (arriving just in time for our wedding meaning I had to get married in a maternity wedding dress with no bump!). He spent most of his first year in hospital.
During that time an MRI showed my husband actually had a slow growing spinal tumour. He was self employed meaning if he didn’t work we had no money so we tried to struggle on with me going back to work full time which was a real struggle with a baby still seriously ill in intensive care.
A week after our son finally came home my husband went into hospital for an operation to hopefully remove the tumour. The surgeon had us under the impression that it would be a straight forward procedure and recovery would be fairly quick with my husband coming home after 1 week and returning to work within the month.
In reality he was in a month and never returned to work. The operation lasted 9 hours and they only managed to take out 40% of the tumour. But the surgeon severed a lot of nerves whilst they were in there leaving my husband without feeling on one side. The 40% grew back almost straight away meaning he then had to go through 6 weeks of radiotherapy. So he still has the tumour along with severe mobility issues.
Life was a struggle for quite a while. Our son had a tracheotomy, ileostomy and was oxygen dependant. Our lives revolved around hospital appointments, operations and emergency admissions. But as the years passed he grew into a beautiful little man who is the centre of our world. When he started school I was the proudest mum at the school gates!
I felt it was time for me to give something back so I became a student nurse. But then things took a down turn again. This time it was me, I was diagnosed with rheumatoid arthritis.
My husband’s mobility has been worsening over the years and by last Christmas he was in a wheelchair, by Easter he could no longer weight bear.
Our house is totally wheel-chair unfriendly being a split level property with one room on each floor, four floors in all. The OT says there is too much wrong with it to even attempt to put right. We are not in a financial position to move as we would not get much for our home even if we were able to sell it. And as a student nurse I am in receipt of a bursary meaning we wouldn’t be able to get housing benefit to afford the rent if we moved into social housing. We are trapped here.
My husband gets about the house on his bum using just his upper body strength. Friction lead to pressure sores and he spent most of the summer very poorly in hospital with complications.
My son’s room was turned into a hospital room so hubby could come home. The nurses come every day. Despite this he has a new sore on his hip and has been diagnosed with osteomyelitis (bone infection). He has been granted 21.5 hours a week care so have just hired him two carers.
No one can tell us why a once very fit young man is falling apart so fast, he is only 41. His scans don’t seem to indicate much change in the size of his tumour. Despite being on long term very strong antibiotics his body struggles to fight infection and the slightest damage to the skin means more sores.
I try to stay positive for us all but there are days I get so fed up. I have no space to call my own. My son now shares my room now that he doesn’t have his own and his toys are everywhere! I flop down into bed after a hard shift right onto chunks of lego, grr.
I do recognise how lucky we are as a family, we are all here and not going anywhere, I know many families with their loved ones in heaven. But like I said at the beginning, I am only human and I do need a whinge every now and again.
So that’s my story, and if actually managed to read to the end I think you deserve a round of applause and cup of tea
I am feeling quite low today and realised I have no one to offload to.
When something bad happens then people sympathise, but when bad things keep happening people don’t know what to say, and then they start avoiding you.
In order to keep my friends I stopped telling them about my life, I am the picture of positivity.
But at the end of the day I am only human and I really do need a whinge once in a while.
I am new here so perhaps I should start at the beginning which is back in 2005.
My partner and I were your average couple, both worked hard, had a mortgage, etc. Then I found I was pregnant which we were over the moon about as I was under the impression I couldn’t have children.
My partner’s health at that time started to deteriorate. He had chronic back pain which he had kept under control for many years with strong painkillers. The pain was becoming uncontrollable and he was struggling to walk.
My pregnancy ended in the 5th month for no known reason, our son was born weighing 1lb (arriving just in time for our wedding meaning I had to get married in a maternity wedding dress with no bump!). He spent most of his first year in hospital.
During that time an MRI showed my husband actually had a slow growing spinal tumour. He was self employed meaning if he didn’t work we had no money so we tried to struggle on with me going back to work full time which was a real struggle with a baby still seriously ill in intensive care.
A week after our son finally came home my husband went into hospital for an operation to hopefully remove the tumour. The surgeon had us under the impression that it would be a straight forward procedure and recovery would be fairly quick with my husband coming home after 1 week and returning to work within the month.
In reality he was in a month and never returned to work. The operation lasted 9 hours and they only managed to take out 40% of the tumour. But the surgeon severed a lot of nerves whilst they were in there leaving my husband without feeling on one side. The 40% grew back almost straight away meaning he then had to go through 6 weeks of radiotherapy. So he still has the tumour along with severe mobility issues.
Life was a struggle for quite a while. Our son had a tracheotomy, ileostomy and was oxygen dependant. Our lives revolved around hospital appointments, operations and emergency admissions. But as the years passed he grew into a beautiful little man who is the centre of our world. When he started school I was the proudest mum at the school gates!
I felt it was time for me to give something back so I became a student nurse. But then things took a down turn again. This time it was me, I was diagnosed with rheumatoid arthritis.
My husband’s mobility has been worsening over the years and by last Christmas he was in a wheelchair, by Easter he could no longer weight bear.
Our house is totally wheel-chair unfriendly being a split level property with one room on each floor, four floors in all. The OT says there is too much wrong with it to even attempt to put right. We are not in a financial position to move as we would not get much for our home even if we were able to sell it. And as a student nurse I am in receipt of a bursary meaning we wouldn’t be able to get housing benefit to afford the rent if we moved into social housing. We are trapped here.
My husband gets about the house on his bum using just his upper body strength. Friction lead to pressure sores and he spent most of the summer very poorly in hospital with complications.
My son’s room was turned into a hospital room so hubby could come home. The nurses come every day. Despite this he has a new sore on his hip and has been diagnosed with osteomyelitis (bone infection). He has been granted 21.5 hours a week care so have just hired him two carers.
No one can tell us why a once very fit young man is falling apart so fast, he is only 41. His scans don’t seem to indicate much change in the size of his tumour. Despite being on long term very strong antibiotics his body struggles to fight infection and the slightest damage to the skin means more sores.
I try to stay positive for us all but there are days I get so fed up. I have no space to call my own. My son now shares my room now that he doesn’t have his own and his toys are everywhere! I flop down into bed after a hard shift right onto chunks of lego, grr.
I do recognise how lucky we are as a family, we are all here and not going anywhere, I know many families with their loved ones in heaven. But like I said at the beginning, I am only human and I do need a whinge every now and again.
So that’s my story, and if actually managed to read to the end I think you deserve a round of applause and cup of tea
Wow as a family you have been through the mill. The forum is the perfect place to let off steam, something we all need to do from time to time. Roll call on carer to carer is a good place to get to know us all. 
