First symptoms - Alicia: My Battle with Wegener's Disease book excerpt

Over the next two weeks  am going to publish excerpts from my book Alicia: My Battle with Wegener's Disease. The e-book is available for Kindle via Amazon.

This chapter is about Alicia's first symptoms.

In the face of pain there are no heroes.
— George Orwell, writer, essayist, journalist and critic - 1984

Although she didn’t realise it at the time, Alicia’s first symptom of Wegener’s Granulomatosis began with headaches in late 2004. They mainly occurred at work in the Register Office so she was referred to Occupational Health and they thought she might be suffering from menstrual migraines. Coincidentally, she was on her period at the time, so it seemed to fit. 

There was also another link. Alicia’s Mam, Christine, had suffered from menstrual migraines throughout her life. When an attack came on she would have to lie down in the dark and would be unable to do anything for 48 hours. She had extreme sensitivity to light and sounds.

She didn’t have all of the classic symptoms though, and this meant that it took a long time for them to be correctly diagnosed. Christine never saw the flashing lights that most sufferers report. Instead she had the terrific pain and couldn’t bear bright lights. Christine took to wearing sunglasses when the migraines were brewing. She would feel sick but would rarely actually vomit. 

Christine described the migraine as dull, constant ache in her head. It was far worse than a regular headache. An aspirin or paracetamol wouldn’t take the pain away.

The worst of the migraines lasted two to three days. If the migraine came on on a Friday night, Christine would be unable to function for the whole weekend. Christine learned to go to bed to escape any sensory stimulation. Stephen would pull the curtains shut in the middle of the day so that the room was in total darkness. He would comfort her as much as he could, bringing her cups of tea, but there was little he could practically do. It was a case of waiting for the pain to pass.

When Alicia described the pain she was experiencing, Stephen initially thought that they were menstrual migraines, the same affliction that Christine suffered from.  

The headaches were so severe that Alicia was sent home from work. Her vision was affected and she went to have her eyes tested. The optician found a slight weakness in one eye so she left with a pair of spectacles with a slight prescription for her left eye and an anti-glare coating. They suspected that using a computer screen continuously in her new job may have brought on the headaches and that she should wear the glasses whenever she was at her desk. Up until this point, Alicia had never worn glasses in her life.

The glasses seemed to help and the headaches seemed to recede a little.

Nevertheless, Alicia was ashen faced and very drawn. This frightened Stephen. As time progressed he realised that these headaches weren’t migraines.  They were something different.

Alicia: My Battle with Wegener's Disease

Alicia: My Battle with Wegener's Disease

Meanwhile, on the run up to Christmas Alicia went on a meal replacement diet. She was hoping to lose weight for the Registrars Christmas party and fit into her party clothes. At the time Alicia weighed 13 stone (182 pounds). Her target was to lose half a stone (seven pounds) in a couple of weeks. 

Alicia felt awful when she was on the diet. She would have a liquid lunch, soup usually, with shakes replacing other meals. She was shattered all of the time, tired and fatigued.  She hated the diet.

Once she has decided on a course of action she is rarely put off though, and Alicia attained her target weight loss. She weighed in at 12 and a half stone (175 pounds). She went to her Christmas party and then partook of the usual Christmas indulgences of eating too much rich food and drinking too much alcohol.

Just after Christmas Alicia began to feel unwell. Her headaches returned worse than ever, and her nose started running. Alicia also had a sore throat and a cough. She was also tired all the time. She felt generally rough and out of sorts.

Even though her nose was blocked, Alicia had a runny nose on her left side only and it was unusual for a cold because it ran a clear fluid continuously. Alicia ended up stuffing a tissue up her nose and leaving it there. She once jokingly said to her Mam ’it’s my brain leaking out.’ 

Alicia was having nosebleeds too. Alicia had had nosebleeds as a child but as she grew older they happened less frequently until she began to think they wouldn’t ever happen again. Now she was having regular nosebleeds, but Alicia also had dried blood in her nose, and whenever she blew her nose there would be blood. 

The symptoms worsened so much that Alicia found it difficult to sleep at night. Her headaches in particular were bothering her more. Alicia had to stay away from work on sick leave.

Alicia went to her General Practitioner (GP) Dr Kaura, and he thought she had a heavy cold, so gave her antibiotics. Her GP wouldn’t normally prescribe antibiotics for a cold but her symptoms were so bad he made an exception. They had no effect on any of Alicia’s symptoms.

As well as the antibiotics Alicia was taking the maximum doses of paracetamol and ibuprofen to fight her constant headaches. They weren’t touching the pain.

A week later Alicia went back to see Dr Kaura and he gave her stronger pain medication in the form of codeine. She took this in addition to the paracetamol and ibuprofen. He also gave her a nasal spray to try and control her runny nose and nosebleeds.

The pain began behind her left eye, deep in her cheek and at the top of her nose. It soon spread to the left side of her forehead. These were like no headaches Alicia had ever experienced. The pain was so overwhelming that she was struggling to function day-to-day. Alicia had had bad headaches in the past but nothing like this. She went back to see the doctor again.

Doctor Kaura suspected that Alicia was suffering from cluster headaches. Now he prescribed Tramadol, an opiate based painkiller, to be taken on top of the other medication.

Initially Alicia felt that this dialled the pain back a little, and dulled it down. However, by then Alicia had learned to function a little despite the pain, so it may just have been that she was dealing with it herself and the drugs weren’t helping at all. She doesn’t know for sure.

That's all for today. If you want to read much, much more please check out the book.

Alicia: My Battle with Wegener's Disease - Frequently Asked Questions

The feedback following the release of my book, Alicia: My Battle with Wegener's Disease, has been overwhelmingly positive so far, and I hope the people that are reading the book are enjoying it.

I have been asked a few questions about the book so I thought that I would answer those questions here. Most of the queries are regarding the format of the book.

Transient

 

Frequently Asked Questions

Is the book available in print?

No. At the moment the book is only available electronically.

How do I get the book?

The book is available on the Amazon store worldwide. Here are a selection of countries where you can buy the book:

What format is the book in?

The book is formatted for the Amazon Kindle. You can download it directly to your device from the Amazon store using the links above.

I don't have a Kindle. Does that mean I can't read the book?

You can still read the book. One of the reasons I chose to publish the book for Amazon Kindle first is so that it can reach as many people as possible. If you don't have a Kindle device you can still read the book on virtually any smartphone, tablet or computer using the free Kindle app.

You can download the free Kindle app here.

The devices you can get the Kindle app for include:

Apple

  • iPad
  • iPhone
  • Mac
  • iPod Touch

Android

  • Tablet
  • Phone

Windows Phone

  • Phone

Computer

  • Mac
  • Windows 8
  • Windows 7
  • Windows XP
  • Windows Vista

You can also use Kindle Cloud Reader to read the book in your browser.

As you can see, there is virtually no device where you cannot read the book!

Will you ever publish the book for iBooks, Nook or any other format?

If the book is successful and enough people ask for it in other formats I will certainly consider publishing it in other formats. I will review things at the end of the summer.

How much does the book cost?

Around £6 in the UK, $10 in the US, and $11 in Australia. 

Image published with kind permission of Planet of Success.

My book Alicia: My Battle with Wegener's Disease is now available

Today is an exciting day - one that I have been working towards for the past 6 months.

My book, Alicia: My Battle with Wegener's Disease is now available for sale on the Amazon website (here is a link to the UK store).

Alicia: My Battle with Wegener's Disease

This is what the book is about:

Alicia grew up to be a fit and healthy young woman who loved rocking out with her friends at gigs and spending time with her family. Her bright future was threatened when she became ill in 2005 and was diagnosed with Wegener's Granulomatosis. Alicia took a battery of drugs including chemotherapy medicines, and eventually turned to an experimental new drug in a bid to save her life. 

This book fully explains the autoimmune disease Wegener's Granulomatosis (also known as Granulomatosis with Polyangiitis - GPA). I explain what the symptoms of the disease are, how it is diagnosed and how it is treated. It will be an invaluable resource to someone, or a family member or friend of someone, newly diagnosed with the disease. 

Perhaps more importantly it is an inspirational story of how a young woman fought a chronic illness to rebuild her life. 

Written with honesty, passion, and humour, this book is impossible to put down until you reach the last page.

The book costs around £6 in the UK and $9.99 in the US and is available worldwide.

Thank you for all of your support and please help spread the word by sharing this post around today!