Winter viruses have begun

Suffering with a rare disease is hard enough daily for anyone, but when the colder months begin and the virus and bugs start to do the rounds it becomes harder for us.

The last month my youngest who picks up every virus in the winter months thought he would be very kind to share it with me (after all I brought him up to share ha, ha)

Umfortunately my body doesn’t quite handle a cold virus like anyone, it literally put me in my bed for 5 days fighting the fatigue, aches and pains in the muscles where my body was working so hard to fight the virus and within this process the body needs extra calories to do this. I suffered oral thrush due to being on long term antibiotics, so eating was a challange and mainly just liquid so I knew I had to start my emergency regime to help prevent a metabolic crises.

Since recovering from this, my youngest has now got another virus. I know illness is hard to prevent but the NHS do have guidelines in place to follow when it comes to keeping a child off school with illness, so for instance a child with a high fever should not be sent to school until the fever has passed and stomach bugs symptoms should be 48 hours from last bout of sickness or diarrhoae.

If these guidelines are followed the risk becomes less to people fighting rare disease, as a simple virus can become life threatening.

Today my body is fighting the fatigue from coping with a poorly child at home, but he is getting over the worst of the symptoms and now we can hopefully keep well ready for Christmas.


Hi My Name is Gemma, I am one of the founders. I am the wife to Adam, and mum to our boys as well as a retired Nurse. Hi My Name is Adam, I am one of the founders. I am husband to Gemma and father to our boys.

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