On December 9th, 2015-Kevin Baxter's life was put on hold.
At the time I was a quite fit 50yr old, played Rugby, did weights, cycling and walked my beloved dogs! Suddenly wham!! It all started with very bad stomach troubles then horrendous back ache for least a week. But I carried on working. Then one night I took myself to the Hospital. I explained my symptoms, had blood tests, was placed on a drip, then sent home with pills and appointment for a CT scan next day! I was in total pain but the scan showed nothing. I went to bed as normal but in the morning, as I tried to get out of bed I collapsed in a heap on floor. I crawled down stairs to get help from my daughter because my partner was at work. I was thinking it was heart attack. Two hours later my doctor arrived... After an examination of my bum area and my paralysis getting worse he called an ambulance where doctors and nurses prodded and pulled me about. Still unsure so they rushed me to another hospital. At the time I didn't ask questions. It was just a blur.
I had a MRI scan that night, still nothing, a catheter was fitted with a relief to go a wee. The Doctor arrived, told me how to move my body and legs. It was now time for the lumbar puncture test where they put a needle in a patients back to check for protein levels. There was horrendous pain as he pulled the needle out, he touched a nerve. It was like an electric shock down my right leg... Yes I cried and cried in pain. The next day I was told that I had Guillain-Barré Syndrome (never heard of it). I had a horrible experience in the first hospital. No one turned me over. Again tears 😭 and hallucinations. I was started on IVIG treatment. I wasn't intubated but my peak flow was recorded daily to check on breathing.
Breakfast arrived but how can I feed myself (problem) in UK 🇬🇧 GBS is rare didn't know how to assist me my dignity was zero. On Christmas Eve I was transferred to a hospital nearer to home. I spent two weeks laying there. No physio at this time neck down was paralyzed.
I left there for a Rehab hospital. Physical movement returned. I had 3 Physios working on me. After 40 days I was allowed to go home. My front room was turned into my space; hospital bed, commode, etc... My partner of 23yrs held down two jobs plus caring for me my Daughter's. It was amazing.
Physiotherapy twice a week. Suffered emotionally & physically (my muscles were gone) physiologically.... Now few steps with crutches but have balance issues and essential Tremor in both hands. I lift weights daily and cardio. Fatigue continues to be a terrible problem..
Thank you to my close family looking after me through this. My anxiety and depression is still there and I suffer with it.
What's weird is my partner worked hard to send me and one off my daughters to New York for my 50th birthday and her 18th birthday as a birthday treat! The trip was set for December 14th, 2015 for four days. But life and Guillain-Barré syndrome got in the way.
Today I am positive. It's nice to share. People don't understand, yes I look OK but inside my body I am hurting... Daily meds are morphine, Gabapenton, Ammertriptlyn and Fluxaten for moods etc..
Love to all GBS CIDP sufferers only you know. Love you Julie xx
At the time I was a quite fit 50yr old, played Rugby, did weights, cycling and walked my beloved dogs! Suddenly wham!! It all started with very bad stomach troubles then horrendous back ache for least a week. But I carried on working. Then one night I took myself to the Hospital. I explained my symptoms, had blood tests, was placed on a drip, then sent home with pills and appointment for a CT scan next day! I was in total pain but the scan showed nothing. I went to bed as normal but in the morning, as I tried to get out of bed I collapsed in a heap on floor. I crawled down stairs to get help from my daughter because my partner was at work. I was thinking it was heart attack. Two hours later my doctor arrived... After an examination of my bum area and my paralysis getting worse he called an ambulance where doctors and nurses prodded and pulled me about. Still unsure so they rushed me to another hospital. At the time I didn't ask questions. It was just a blur.
I had a MRI scan that night, still nothing, a catheter was fitted with a relief to go a wee. The Doctor arrived, told me how to move my body and legs. It was now time for the lumbar puncture test where they put a needle in a patients back to check for protein levels. There was horrendous pain as he pulled the needle out, he touched a nerve. It was like an electric shock down my right leg... Yes I cried and cried in pain. The next day I was told that I had Guillain-Barré Syndrome (never heard of it). I had a horrible experience in the first hospital. No one turned me over. Again tears 😭 and hallucinations. I was started on IVIG treatment. I wasn't intubated but my peak flow was recorded daily to check on breathing.
Breakfast arrived but how can I feed myself (problem) in UK 🇬🇧 GBS is rare didn't know how to assist me my dignity was zero. On Christmas Eve I was transferred to a hospital nearer to home. I spent two weeks laying there. No physio at this time neck down was paralyzed.
I left there for a Rehab hospital. Physical movement returned. I had 3 Physios working on me. After 40 days I was allowed to go home. My front room was turned into my space; hospital bed, commode, etc... My partner of 23yrs held down two jobs plus caring for me my Daughter's. It was amazing.
Physiotherapy twice a week. Suffered emotionally & physically (my muscles were gone) physiologically.... Now few steps with crutches but have balance issues and essential Tremor in both hands. I lift weights daily and cardio. Fatigue continues to be a terrible problem..
Thank you to my close family looking after me through this. My anxiety and depression is still there and I suffer with it.
What's weird is my partner worked hard to send me and one off my daughters to New York for my 50th birthday and her 18th birthday as a birthday treat! The trip was set for December 14th, 2015 for four days. But life and Guillain-Barré syndrome got in the way.
Today I am positive. It's nice to share. People don't understand, yes I look OK but inside my body I am hurting... Daily meds are morphine, Gabapenton, Ammertriptlyn and Fluxaten for moods etc..
Love to all GBS CIDP sufferers only you know. Love you Julie xx
