Carrie’s story – straight from the heart

A WOMAN being fed directly into her heart is raising awareness of the rare condition from her hospital bed in Newcastle through social media.

Carrie Beckwith-Fellows was born with a genetic connective tissue disorder called Ehlers Danlos Syndrome (EDS) which causes her joints to dislocate on a daily basis, bruise from just a hug and resulted in her digestive system totally shutting down.

She was managing to be fed through a tube into her small intestine but after becoming dangerously ill before Christmas she was admitted to hospital.

As a last resort she is now being kept alive through parenteral nutrition (TPN) which feeds nutrients directly into the bloodstream through a tube in her heart.

Carrie Beckwith-Fellows, 36, is being fed through total parenteral nutrition (TPN) at the Freeman Hospital in Newcastle

Carrie Beckwith-Fellows, 36, is being fed through total parenteral nutrition (TPN) at the Freeman Hospital in Newcastle.

Carrie is chronicling the reality of living whilst dying through her blog and Facebook page with posts and videos that are as brutally honest as they are uplifting and funny. She wants to keep well-wishers up-to-date on the latest developments but also enlighten medical professionals about the critical condition from a patient’s point of view.

“I want to raise awareness of intestinal failure especially with doctors, so no one else has to go through what I’ve had to endure. Over the years I’ve experienced a lot of unintentional neglect from doctors who do not understand the complexities of Ehlers Danlos Syndrome and intestinal failure.”

Her latest vlog details how she coped with medical superbug MRSA and she keeps followers up to date from her bed in the Freeman Hospital in Newcastle via daily Instagram posts sharing the latest developments and answering questions such as how many tubes she currently has going into her body. The answer is four (including a catheter and stomach drain) but, potentially, could be increased to five.

Now 36, she was only diagnosed with EDS at the age of 27 but has suffered a lifetime of watching her body literally fall apart.

Carrie said: “My collagen is very weak and fragile so my body cannot hold itself together. My skin tears easily and my organs are stretching to the point they can no longer function and are failing – my neck is too weak to hold the weight of my head, another life-threatening complication of EDS.”

Despite being in constant pain she remains incredibly upbeat and shares slices of her life with ‘Mrs Wifey’ (aka Lisa) on their blog ‘Rural Teacake‘. They were living in Hartlepool in Teesside, before the couple decided to start married life in the remote Kielder forest after honeymooning in the stunning far-flung corner of Northumberland.

Carrie Beckwith-Fellows with her wife, Lisa, both from Teesside, blog and vlog about their alternative slice of life in the Kielder countryside in www.ruralteacake.com

Carrie Beckwith-Fellows with her wife, Lisa, both from Teesside, blog and vlog about their alternative slice of life in the Kielder countryside in www.ruralteacake.com

A professional artist, Carrie turned freelance before moving to the countryside but worked so hard  her body was pushed to limit, becoming so sick that it took her a year to recover and learn how to stand up and walk again. But full of determination she kickstarted her career and business was thriving until her health nosedived once again and she took up writing instead.

She soon secured regular paid commissions and a book deal as well as becoming a regular Huffington Post contributor and blogger. Carrie also works with a small UK based charity supporting people with Intestinal Failure called GIFT (Gastroparesis and Intestinal Failure Trust), which set-up by Natalie Roux-Bean and Rachel Stott, who have the condition. She helps with the charity’s social media presence, writing for the charity blog and representing GIFT among the North-East hospitals.

“There is no alternative to TPN once the digestive system fails and can no longer manage tube feeding. I’m having some issues with my overactive allergy cells tolerating the TPN but hopefully we will find a way around that.”

“I talk about GIFT with most of my doctors and nurses because it’s important they are aware the support is there for patients. We also do a lot of fundraising which directly goes to researching the condition. We spend a lot of time skyping from our hospital beds organising campaigns, contacting doctors who show compassion for patients and working with research teams.

She is still writing her book about Ehlers Danlos Syndrome as well as busy interviewing case studies for it and she’s looking at setting up a small charity to support people with complex conditions who spend a lot of time in hospital.

“I want to raise awareness of intestinal failure especially with doctors, so no one else has to go through what I’ve had to endure. Over the years I’ve experienced a lot of unintentional neglect from doctors who do not understand the complexities of Ehlers Danlos Syndrome and intestinal failure. It’s important that my journey helps others so they don’t have to be told to “drink more” by a medic who simply doesn’t understand that our digestive system is completely paralysed and dead. I’ve been on quite a journey but I think it’s really important to talk about these things, horrendous things can happen but you have to be honest.”

“EDS often goes hand-in-hand with Postural Orthostatic Tachycardia Syndrome (POTS) which means my body cannot adjust to gravity.  My body can’t adjust when I stand (or sit for long periods) so my blood pressure drops and my heart beats too fast.  My brain doesn’t get enough oxygen and I pass out. Mast Cell Activation Disorder (MCAD) is also very common with EDS and means my immune system is on overdrive all the time so I have allergic reactions to everything. Even hot water, or sitting in a warm room can cause serious allergic reactions.”

“I do have days when I sit on the floor and cry but don’t think “why me?” because why not me? I am a Christian and my faith is very important to me. I still count myself as very lucky. We took the risk of moving to Kielder and even though we are dealing with serious health stuff I still get joy from the small, simple things in life, like on a good day I can sit by the edge of the lake with my feet in the water.

“I am determined to not let my life become a waiting game. I want to fill it with creative experiences, be a voice for those who are ignored by the medical community and most importantly, to let my story encourage others who are struggling.”

Carrie Beckwith-Fellows who was born with a genetic connective tissue disorder called Ehlers Danlos Syndrome (EDS) is being fed directly into her heart.

Carrie Beckwith-Fellows who was born with a genetic connective tissue disorder called Ehlers Danlos Syndrome (EDS) is being fed directly into her heart.

Carrie has recently raised £22,000 for a specialised powered wheelchair from Dragonmobility which will let her get her back into the forest and become part of the close-knit Kielder community once again.

“As my upper body is quite weak and my arms are floppy I can’t push myself any more in my manual wheelchair but this will give me back some of my independence. A Dragon wheelchair is different as it moves like the human body and is instinctive to drive. When I’m in the Dragon wheelchair I feel like I am dancing…something I’ve not done in a very long time and something I miss more than anything else.

“It will give me back freedom to go out and explore the world around me rather than watching it from my window.  Sitting up is very difficult and my upper body needs to be supported. At the moment I am in pain 24 hours a day and the specialists seating will help with that, it will allow me to continue working and get out of the house on my own even just to post a letter – something I haven’t been able to do for six years.”

Carrie was admitted to hospital just before Christmas and will be there until her body accepts the new method of being fed into heart.

“I am determined to not let my life become a waiting game. I want to fill it with creative experiences, be a voice for those who are ignored by the medical community and most importantly, to let my story encourage others who are struggling.”

“There is no alternative to TPN once the digestive system fails and can no longer manage tube feeding. I’m having some issues with my overactive allergy cells tolerating the TPN but hopefully we will find a way around that. We have to, because if TPN doesn’t work then there are no alternatives. This is why it is so scary reaching this stage. To know there is no Plan B makes things suddenly very real.

She added: “I’m still very poorly but hopefully things are changing direction and once again I have been blessed with another chance at life. It’s important I don’t waste that and I’m determined to use my experience to help other people the best I can.”

FOLLOW:

Rural Teacake blog and vlogs (For the Rural Teacake Blog and Vlogs)
Rural Teacake Facebook
Rural Teacake Instagram
GIFT (Gastroparesis & Intestinal Failure Trust) UK charity

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