For six years Faye Savory was told she had chronic fatigue syndrome. It turned out to be Lyme Disease and now she is up for a top award. Catherine Scott meets
When Faye Savory graduated as speech and language therapist she left Sheffield to take up her dream job on the Isle of Lewis.
“The job was a paediatric speech and language therapist based in a hospital but I had to travel all over the island. It was an amazing opportunity,” says Faye, 26, who moved to the island with her boyfriend Jared Carnie.
“It was so beautiful and I loved the job.”
But after six months Faye started to feel unwell.
“While I was at university I went travelling in Thailand and got covered in bites. I was really quite poorly when I returned to university and they thought I might even have malaria at one point, but the tests came back negative and eventually I started to feel better.
“Bit six months after we moved to Lewis the symptoms returned. I was really fatigued all the time and I was worried about driving.”
As the symptoms got worse Faye was forced to take time off work.
“I started to get terrible muscle and joint pain, my neck and shoulders were particularly painful. I then started to develop cognitive difficulties and became quite confused and found it difficult to string a sentence together.
“I became very sensitive to noise. It was really frightening and very frustrating. Jared was looking after me. He had to wash and dress and feed me. We were only 23 and not what we had planned at all. We had moved to this beautiful island but all I could see was the four walls of hour home. If I did go out it was in a wheelchair.
Eventually after repeat visits to her GP Faye was diagnosed with chronic fatigue syndrome.
“I didn’t feel the diagnosis was right, I felt there was more going on in my body but there was no one on the Isle of Lewis who could help me.”
Her illness started to effect her emotionally and well as physically, but then she received a gift from a friend who was also ill.
“I received this amazing box of treats from my friend which really cheered me up as we didn’t really know that many people on Lewis. It was like getting a great big hug and it gave me an idea for a business.”
But Faye was in no position to build on her business idea.
“My health was so bad that I knew I had to resign from my job and return to Sheffield where there were experts in ME (Myalgic Encephalomyelitis another name for chronic fatigue syndrome). That was in 2004.”
The ME clinic in Sheffield helped Faye manage her symptoms. “They taught me that I needed to spread activities out over the day rather than trying to do everything. So I’d have a shower and then a lie down for two hours and then try to do something else. Slowly, I began to relearn what was important to me and started to introduce activities, however small, into my day that would bring me fulfilment. I revisited large-print children’s books I had enjoyed when I was younger for a few minutes at a time. I spread an episode of a TV show I loved across a week. I made a bracelet in ten bead bursts. And then as I saw improvement I increased these activities and added in some more.”
Faye wrote blog posts about her experiences and started to sell the jewellery she was making online, donating the profits to charity. But as she realised that it was unlikely she would return to her originally career she realised that she needed to start some money to support herself.
“I wanted to work but there weren’t many jobs that existed that were just two hours a week or had the flexibility that my condition needed.” She started to think about the idea she’d had back on Lewis.
“I wanted to help people show their loved ones they were thinking of them even from far away. I decided I wanted to make and sell ‘hug in a box’ gift hampers. I’d heard about the Prince’s Trust so I got in touch.”
Faye enrolled on the Trust’s four day Enterprise Programme. “It was a big thing for me to go. My confidence had plummeted.
“I told them that I had any idea for mail order gift boxes which felt like a hug. They were great, but said I needed to flesh out my idea. They were so supportive and understood that I could only do very small amounts at a time.”
And in Summer of 2015 BearHugs was launched.
“With a small grant from the Prince’s Trust I made 25 prototypes and sold 24 in three weeks.””
Initially the boxes contained similar items to those Faye’s friends had sent her such as toiletries and chocolates, but the Princes Trust encouraged her to do some market research.
“I used Face book and my blog to ask people what they would like to receive in the post if they were poorly.” She now has a range of 20 different boxes on her website and people can also design their own.
“I try to use small local suppliers which I think is important.”
From 25 boxes Faye has now sold more than 3,000 and is looking to expand,
“I want to employ people like me who can only work reduced hours.”
And she is one of just three finalists through to The Prince’s Trust & TK Maxx Celebrate Success Awards in London on March 15.
Although Faye was managing her symptoms she became increasingly to determined to find out what was wrong with her. “I just couldn’t out my head the fact that there must be some underlying infection,.
“I did some research of my symptoms and Lyme Disease kept coming up. Lyme Disease is carried by ticks which are prevalent on the Isle of Lewis and then there were all the bites I got in Thailand.” However tests came back negative. “The problem is the NHS test only picks up about 50 per cent of Lyme Disease cases.” So Faye decided to send blood samples off the lab in Germany. The results showed she had a very high level os the disease in her blood, but then she had to go about trying to get NHS treatment . “It can be hard getting the NHS to recognise the results, but I was lucky my consultant gave me antibiotics immediately. They made me very poorly but that could have been the Lyme bacteria.”
Since then Faye has seen a gradual improvement in her condition although she doubts she will ever be 100 per cent recovered. She now wants to raise awareness of the disease and increase prevention
“The earlier Lyme Disease is treated the better the outcome, but the best thing is if you think you have tick bite go straight to your doctor. There have been times since I fell ill when I’ve struggled to see past my limitations and things have felt quite bleak. Starting BearHugs though has completely reaffirmed for me that there always opportunities if you look in the right places.”
Lyme disease, or Lyme borreliosis, is a bacterial infection spread to humans by infected ticks.
Ticks that carry the bacteria responsible for Lyme disease are found in woodlands throughout the UK and in other parts of Europe and North America.
It’s estimated there are 2,000 to 3,000 new cases of Lyme disease in England and Wales a year. About 15 per cent of cases occur while people are abroad.
Lyme disease can often be treated effectively if it’s detected early on. But if it’s not treated or treatment is delayed, there’s a risk of severe and long-lasting symptoms.
There is currently no vaccine available to prevent Lyme disease