This post discovers Carrie Martin’s story of what life with Wilson’s Disease is like.
Carrie completed her primary and secondary education. She attended St Joseph’s Primary School then went to All Hallows RC High School. She has worked at places such as Au Natural, Tesco, and Kingfisher after school. Other places include the role of teaching gymnastics.
Carrie lived in Ordsall when she became pregnant with her first child, Kaysey. Kaysey was born one month prematurely. And again, she gave birth to a boy named Kyran, who was two months premature.
Two years ago Carrie went to the doctors as she was constantly feeling tired. She was given iron tablets and was told she was anaemic, bearing in mind she had not had a blood test. Around a year later she went back to her same doctors as nothing had changed so she was then given antidepressants. And as time went on, Carrie suffered from bad stomach ache where she was then advised to take two paracetamol, four times a day.
After all of this Carrie decided to change doctors so she registered with Sorrel Bank Practice. This is when the assessments began. And thank God she did change doctors, as she was told the consequences of continuing on the medication she was previously given would have resulted to Carrie having a heart attack within the following three months.
She couldn’t be more grateful for the help she has received, with significant efforts John Healing, Emma Donaldson, and the Specialists in Birmingham. She has to travel to Birmingham to have her blood tests there.
Last Christmas, in 2015, Carrie couldn’t walk, was even more exhausted and ended up in hospital. By now, Carrie was correctly diagnosed from two years before – she knew she had Wilson’s Disease. Considering the condition affects 1 in every 30,000 people, I think you’ll agree with me to say that, Carrie’s is 1 in a million, just like her dad always said to her.
I can’t imagine myself in Carrie’s shoes – not in the way she holds so much strength and determination. I think she is a woman who wants to live her life regardless of how Wilson’s is challenging her.
Her children have seen their mum change quite distinctively over the past couple of years. Carrie has lost a lot of weight, she can’t eat properly some days. She made a point that she wishes more awareness was made on the packaging of food with ingredients. Especially as she cannot consume foods such as chocolate, lamb, nuts, mushrooms amongst many others, due to the copper in them. She only chokes on foods like chicken.
Sadly, lamb is Carrie’s favourite meat.
Carrie takes each day as it comes
It affects me differently every day. I can’t see when I wake up, everything’s blurred. I struggle to find my alarm and always shake in the morning. To stop me from being down I go to the gym every day to keep me motivated.
What affects Carrie most emotionally is the fact that her children have to see what’s happening. She thinks it’s affecting Kaysey much more than Kyran – most probably because she’s older and finds it harder to adapt to. Behaviours can be quite challenging but she still loves them both dearly, and she said her and Kyran always joke around. For example, if she can’t reach a cushion on the bed, Kyran will say “3, 2, 1…” before she gets it.
Carrie’s tends to seize up often and says that,
I’m not strong anymore – that’s why go to the gym – to get my muscles back.
When I sat down with Carrie and we had this chat, it amazed me at how calm and positive she was. She took the conversation very seriously but also added her humour that she’s like Dory because the condition causes her to forgets things. Of course, I loved the fact that she said, “You’re never too old to watch Disney.” And that’s coming from a 29 year-old.
She has her close family and friends
It’s too late for a blood transfusion as there’s too much deterioration on her liver, eyes, and brain. I pray for Carrie that she will receive a liver transplant. Her closest family and friends are all behind her.
After she said this, I felt helpless, so I knew what I had to do. I had to spread awareness. I can plod on every day but it’s the thought of an operation, driving up to the hospital on that day that scares me.
She struggles to bath and shower and tends to slip in the shower. I wish she could get the help she needs. Yesterday, I looked her straight in the eyes and could see how much pain she’s been through but wants to live her life as normal as she can.
I handed her a cup of tea and it shuck in the hands to the point of spilling a little – but it was so moving to see that she’s accepting the stage she’s got to and didn’t get upset.
Please don’t just avoid this story – feel something from it. I have definitely been inspired by Carrie and I can certainly say she’s touching the hearts of many, many people around her local area and probably further.
- More people need to know about Wilson’s Disease
- More awareness needs to be known about the ingredients of foods
- And more people need to come together to support such conditions
An extra message from Carrie:
Wilson’s Disease explained by Carrie Martin
Hi my name is Carrie martin and I have Wilson’s disease.
It is a rare hereditary disease which the body produces an overload of copper in the brain, eyes, liver and affects you physically, mentally and emotionally. Only 1 in every 30,000 is affected. It is, and usually is, easily diagnosed from a younger age but unfortunately in my case I was diagnosed 2 years ago at the age of 27.
I was contemplating in committing suicide, but my children were the only reason at the time, for me to get through it. I have so much support from family and friends that it makes want to carry on. I am and always will be a fighter. I am in this for the long hall.
There is no quick fix. So I live to fight another day.
Please see below a list of symptoms related:
• Loss of appetite
• Jaundice, yellowing of the skin and whites of the eyes
• Easily bruising
• Fluid build-up in abdomen
• Problem with swallowing, speech and coordination
• Uncontrollable movement, twitching
• Lack of facial muscle movements
• Change in personality
• Memory loss
• Uncontrollable weight loss
If anybody has any or all symptoms please contact your GP. You are not alone. Please add me and share my story with your Facebook friend by clicking here.
Read more about the condition here. Stay posted for weekly diaries coming up from Carrie.