October 2015 : What’s worse than being ill 24/7? by Emma H.

What’s worse than being ill 24/7?

Being ill 24/7 yet nobody believing you!

My journey started not long after I had turned 18, 6 years ago. At the time I had a good job, lived with my long term boyfriend and had a good bunch of friends yet my life was slowly falling apart. I felt like a prisoner in my own body.Prison1

My symptoms started off as nothing major just little individual problems. The first thing that happened was that I developed late onset of asthma which continuously had me in and out of hospital. Next I completely lost my smell and taste and partial hearing loss too. It was at this point the doctors were telling me it’s just a cold and that I was making it out to be worse than it is. My body always hurt like hell, every step felt like I was climbing Mount Everest. My muscles would cramp all through the night. I seemed to pick up every infection going and had stomach pains that would have me crippled, bent over in agony.

I was a regular at my GP surgery, pretty much every week for about 18 months. It got to the point that the GP just wouldn’t take me seriously and refused to give me anything to help. The only medication that I was prescribed was anti-depressants. I refused to take them, I knew the problem wasn’t in my head. I would break down to the GP but only because I was in so much physical pain not because I was depressed. Looking back I can sort of understand why they didn’t think there was anything seriously wrong, they were looking at the problems on there own rather than as a whole.

April 2011 nearly 2 years since the symptoms started and at the age of 20, I have no idea how I had managed to carry on up to this point. By now I was sure something was seriously wrong and knew that I had a choice to make. I could either give up or take it into my own hands. I chose the latter.

My GP and A&E were both out of the question, I had received a letter from the hospital saying I was wasting the time of the A&E staff. The only option I had sadly came down to money. My mum was just as frustrated as I was so she paid for me to see a doctor privately. If I hadn’t of done this I’m almost positive I wouldn’t be here today.

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Emma receiving a Rituxan infusion

The private doctor took one look at me and sent me to St James hospital in Leeds. She could see something was seriously wrong and I had finally made it into the hospital as an inpatient, there was no way I was leaving my bed until I had answers!

Things quickly spiraled out of control. I couldn’t eat, even water made me vomit. I lost 2 stone in 4 weeks. My breathing deteriorated, the pain was unbearable. I eventually lost use of both my wrists and one of my feet. The funny thing is even though all of these things were happening the doctors seemed to still not believe me. I was accused of so much; some examples are an eating disorder, a drug addition, getting abused at home.

I was 20 years old and I was unable to go to the toilet on my own, how could I possibly have made this up?!

Just when I thought I had no more strength to carry on, I got what I had been waiting for, a diagnosis!

Churg Strauss Syndrome CSS ( also now referred to as Eosinophilic Granulomatosis with Polyangiitis EGPA), I’d never heard of it before but just putting a name to the problems made me feel relieved, it made me feel safe, although that didn’t last very long. I was told to get my family to the hospital as soon as possible as it was highly likely I wasn’t going to make the next 48 hours. I should have been terrified but more than anything I felt determined not to give up. I wanted to get married, buy a house, be a mum, how can I give up when I had so much ahead of me?IMG_2774

I was put straight onto Cyclophosamide chemotherapy infusions. Day by day I was getting stronger, 4 weeks later I was allowed to go home. I had been in hospital for 2 months but I was finally free and best of all I had a diagnosis.

The last 4 years have been a roller coaster ride. My health has been up and down constantly throwing new loops into the equation. I’ve been in and out of hospital more times than I can remember, the amount of CT and MRI scans I’ve had I should be radioactive. Some days I would be taking up to 30 pill tablets and be physically bed bound.

It’s hard to believe now that up until the age of 18 I had no health problems. I was fighting fit, I loved going on long walks, going to the gym and playing for a football team. But now that seems like a distant memory even something as easy as going to the supermarket is a big challenge for me. Although that’s doesn’t mean I’m going to sit down and settle with it, I’m determined that one day I will be able to do all those things again and more.

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Emma on her wedding day

Last year was a major turning point in my life, when I first was told I had CSS I thought this one thing would be impossible. I walked down the isle and married the love of my life, the person who was there from the beginning and has traveled with me on my journey and will continue to do so for the rest of my life. I wasn’t able to have the big wedding that I had dreamt of as my body and health was not up to it. Instead we chose to get married in St Lucia, a quiet intimate wedding with only 2 guests. I only managed to be awake for 4 hours of my wedding day but those 4 hours were the best of my whole life! I still dream of a big perfect wedding with all our family and friends, when the day comes that I am well enough I would love to renew our vows and have the day just how I had dreamt it would be.

I also thought that I would never get the chance to own a home of my own but me and my husband now own a perfect little home which proves to me just how far I have really come.

Another thing is that all of the doctors had told me to give up work; the CSS would 1902939_10152826110132881_4264012896430159962_nmake it impossible for me to hold down a job. But guess what, they couldn’t be more wrong! I work full time and have continued to do so throughout everything, my boss has been there and supported me all along the way, which has made the impossible possible.

Right now I am seen under the Vasculitis team at Addenbrookes hospital in Cambridge, it is 7 hour round car journey from where I live but well worth the miles to be seen by one of the best Vasculitis specialist in Europe.

8 weeks ago I had a treatment called Campath that is in trial stages for CSS. I had been on Rituximab for the majority of the past 4 years but this hadn’t controlled the illness successfully.

I am positive that the Campath will finally take control of my health problems, even just after 8 weeks it has improved my health massively. In fact I do feel that in ways I am better than have been since my journey began.

I want to have the chance to enjoy my life just like a woman in her 20’s should be doing. There is just one more big dream I have, the biggest out of them all. I would love to become a mum, at this moment in time this isn’t medically possible but I do have hope that one day my dream can come true.

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As long as I carry on with my head held high and the smile on my face I am determined I will get to the life I deserve.

I will not let my illness define me!

Kevin Selig  was diagnosed in January 2014 with Churg-Strauss Syndrome and fought a courageous battle against the disease. Kevin passed away on Saturday, June 21, 2014, at the Mayo Clinic Hospital in Jacksonville, Florida.
We in the CSS community were saddened by the loss of such a vibrant human being and reminded how our illness often goes undetected until too late.  Glenys , a very brave CSS warrior, set us into motion to bring awareness to our disease with a challenge to raise awareness of Churg Strauss Syndrome by posting a story on the the 1st of every month in an effort to let the world know we exist and we want to help others obtain earlier diagnoses. 

Link to other CSS awareness posts in memory of Kevin Selig

General CSS/EGPA and Vasculitis Information