Living with dying

HER digestive system has finally shut down and she’s now being fed directly into her heart to stay alive. But Carrie Beckwith-Fellows is sharing her life on social media to raise awareness of the rare condition she suffers from.

Born with a genetic connective tissue disorder called Ehlers Danlos Syndrome (EDS), her joints dislocate on a daily basis and she bruises just from being given a hug. She was being fed through a tube into her small intestine until just before Christmas, but after becoming dangerously ill she was admitted to hospital. She is now being kept alive through total parenteral nutrition (TPN), a method of delivering nutrients directly into the bloodstream through a tube in her heart.

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

BLOGGERS: Carrie Beckwith-Fellows, with 'Mrs Wifey', aka Lisa

Her latest vlog details how she has coped with the 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, this could be increased to five.

Now 36, Carrie was diagnosed with EDS at the age of 27, but has suffered a lifetime of watching her body fall apart. “My collagen is very weak and fragile so my body can't hold itself together. My skin tears easily and my organs are stretching to the point they can no longer function and are failing," she says. "Plus, my neck is too weak to hold the weight of my head, another life-threatening complication of EDS.”

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

A professional artist, Carrie turned freelance before moving to the countryside, but worked so hard her body was pushed to limit. She became so sick 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. She is still writing her book about Ehlers Danlos Syndrome and busy interviewing case studies for it while also 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,” she says. “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. 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, let my story encourage others who are struggling."

Carrie recently raised £22,000 for a specialised powered wheelchair from Dragonmobility which will enable her to get 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," she says. "A Dragon wheelchair is different as it moves like the human body and is instinctive to drive. When I'm in it, I feel like I am dancing... something I've not done in a very long time and something I miss more than anything else.

For now, Carrie will have to stay in hospital until her body accepts the new method of being fed into heart.

“There is no alternative to TPN once the digestive system fails and can no longer manage tube feeding,” she explains. “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.

“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.”