About
I’ve been lucky enough to have lived abroad for the majority of my life, growing up in Germany,
America, France. We’ve now moved back to England and have been here for the last 4 and a half
years. I loved growing up abroad, I had so many opportunities that I wouldn’t have had here in the
UK. I’ve sung for Ambassadors and in Disneyland Paris, I’ve had the opportunity to raise money for
many different charities including The Smile Train and Help for Heroes, I even got to meet both
Camilla Duchess of Cornwall and the Countess of Wessex!
years. I loved growing up abroad, I had so many opportunities that I wouldn’t have had here in the
UK. I’ve sung for Ambassadors and in Disneyland Paris, I’ve had the opportunity to raise money for
many different charities including The Smile Train and Help for Heroes, I even got to meet both
Camilla Duchess of Cornwall and the Countess of Wessex!
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| My parents totally embraced the MidWest look! |
Living abroad came with its challenges however, especially when you’re a chronically ill child. Your
extended family and friends can feel so far away, they can’t be there to support you. The community
around when you’re abroad is great, though there's no substitute for family. Over the years I've been
diagnosed with plenty of long term conditions.
extended family and friends can feel so far away, they can’t be there to support you. The community
around when you’re abroad is great, though there's no substitute for family. Over the years I've been
diagnosed with plenty of long term conditions.
Celiac disease is now a pretty well known illness and is now fairly easy to manage since there is so
much gluten free food out there and awareness of the condition is great!
much gluten free food out there and awareness of the condition is great!
Hashimoto's Thyroiditis is a type of hypothyroidism caused by the immune system attacking the
butterfly shaped gland in your neck called your thyroid. In my case this caused my thyroid to swell
and feel as though it were pushing on my windpipe, this lead me to have a total thyroidectomy in
2015. I take Levothyroxine to replace the thyroid hormone and will need to take this for life.
butterfly shaped gland in your neck called your thyroid. In my case this caused my thyroid to swell
and feel as though it were pushing on my windpipe, this lead me to have a total thyroidectomy in
2015. I take Levothyroxine to replace the thyroid hormone and will need to take this for life.
Complex Regional Pain Syndrome which was caused by a break in my back aged 12, it causes
paralysis of my legs, neck, arms and hands. Sometimes causing full paralysis but more commonly
just paralysing the lower of my body. CRPS also causes intense, chronic pain and has done for the
last 7 almost 8 years. This condition is little know and little understood.
paralysis of my legs, neck, arms and hands. Sometimes causing full paralysis but more commonly
just paralysing the lower of my body. CRPS also causes intense, chronic pain and has done for the
last 7 almost 8 years. This condition is little know and little understood.
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| Learning to walk again after 6 weeks of paralysis |
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| First Picture in my current chair after |
Chronic Fatigue Syndrome, diagnosed in December 2015, is a long term illness. It causes extreme
fatigue, nausea, dizziness and heart palpitations. At the time of writing this my Chronic Fatigue has
meant that I had to quit my job and am now almost housebound. A combination of CFS and CRPS
means that I'm not confident to leave the house on my own for very long.
fatigue, nausea, dizziness and heart palpitations. At the time of writing this my Chronic Fatigue has
meant that I had to quit my job and am now almost housebound. A combination of CFS and CRPS
means that I'm not confident to leave the house on my own for very long.
Erythromelalgia is a rare condition which causes burning pain and redness in my feet and hands,
and makes showering very painful. Much like CRPS and CFS it is not know why people develop
Erythromelalgia.
and makes showering very painful. Much like CRPS and CFS it is not know why people develop
Erythromelalgia.
Raynaud’s Phenomenon is a really common circulation problem, it means that y hands and feet get
cold faster than your average person’s, they also change colour to either red or blue. It’s fairly easy
to manage,I just have to make sure I have gloves on me at all times summer or winter!
cold faster than your average person’s, they also change colour to either red or blue. It’s fairly easy
to manage,I just have to make sure I have gloves on me at all times summer or winter!
Postural Orthostatic Tachycardia Syndrome, the latest in a seemingly unending line of potential diagnoses. POTS effects your autonomic nervous system (the nervous system in charge of automatic body functions). Normally when you sit up or stand, gravity pulls some of your blood down to your belly area, hands and feet. To combat a drop in blood pressure your heart rate increases slightly and blood vessels contract. In POTS there's a drop in blood supply to the heart and brain when you become upright and the heart races to compensate for this. For me POTS causing lightheadedness and blood pooling in my legs which is very painful if I stand for more than a few minutes.
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| The infamous 'Dead Mans Feet' |
One reason I may have all of these issues is that I had Pneumonia and Septicemia when I was 1 year old.
Some doctors think that my body was so badly poisoned that it became very vulnerable to future
health conditions.
Some doctors think that my body was so badly poisoned that it became very vulnerable to future
health conditions.
Whilst my health issues take a lot of management day to day they aren't everything about me. I also
love baking (some cakes were more successful than others!)
love baking (some cakes were more successful than others!)
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| Behold 'The World's Ugliest Battenburg'! |
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| A more successfull birthday cake. |
I also love crafts like knitting and sewing, I'm currently knitting premature baby hats for my local neonatal intensive care ward.
Whilst it's looking unlikely that I will recover from my illnesses I still fully intend to live a full life within the bounds of what my body can achieve. It makes me sad that nothing can be spontaneous or carefree but I'll still find ways to travel and explore, it just take a bit more planning and time. I'm still hoping to move abroad at some point but we'll see what life throws at me next s to whether that happens or not!
I've been so incredibly fortunate to have my family, they are so strong and hold me together a lot of the time. My brother never fails to make me laugh even in the darkest of times. My Papa has also hada fair few health problems, he helps me to explain what I'm feeling and really understands the struggles of sensory overload and chronic pain. My Mama is my lifeline, she's there for every doctors appointment, every scan and for much of my life shes been my carer as well as my parent and best friend. Our dog Alfie is my companion and night, we share the same incredible ability to nap at a moments notice. I'd be lost without them.
