Jane's Story

I have now been diagnosed for just over two years but,  it was  around 3 years, just prior to my 40th birthday, that I began to feel unwell.  At the time I thought it was a common cold or virus of some description. It began with swollen glands, upper respiratory symptoms diarrhea, vomiting and chesty cough. 

 

I have a history of controlled asthma and the symptoms soon went to my chest so I went to the GP for antibiotics and steroids (5 day course) which would normally get me on the road to recovery.  To cut a long story short, my symptoms worsened and were not controlled until I was hospitalised with a peak flow of 80 and oxygen saturations under 90. I was very lucky to be met at my local hospital by a respiratory consultant who was tenacious and inquisitive and managed to refer me to colleagues for biopsies, which lead to a diagnosis, finally, 5 months later. 

 

I  have now been on steroids for 3 years now, along with a changing cocktail of powerful medications and symptoms. I have Tracheaobronchomalacia which has completely changed my life.  At times it renders me incapable of walking more than a few yards or climbing the stairs in my house. I am ground floor bound for periods of time when I relapse and am unable to leave my house due to the physical restraints, but also the emotional challenges it has given. Once confident and capable I struggle with anxiety about the physical symptoms and also the way I look as the meds have changed my appearance dramatically as well as causing me to sound quite similar to Darth Vader at times. 

 

I now have to face giving up my job as a day services manager for people with learning disabilities which I enjoyed and was also proud to do. Feeling like a non contributing member of the family and society has hit me hard although I understand my health needs to be the priority and treatments and responses to treatments will hopefully change. I suffer with extreme fatigue and become very befuddled at times, as well as generalised pain . I am unable to cope with the stress of working. 

 

My condition can change in its severity from day to day and hour to hour, which can make planning very difficult. At the moment, the disease is very active and the inflammation is causing increasing amounts of damage but hopefully we can get this under control and I can proceed with bronchiole stenting which should make day to day life easier. 

 

My treatments are not working as well as the team would like at the moment but I have a large team working on my behalf and demonstrating how wonderful and flawed the NHS is at the same time. 

 

I feel like a professional patient and have spent hours, like many of us, on these sites researching the disorder and seeking support from the groups. I am lucky enough to have a lovely partner who drives me all over the place for appointments and two wonderful teenagers who have had to cope with seeing their mother extremely poorly, but have rolled up their sleeves and continued with their lives no excuses. Whilst using the crutches and wheelchair I occasionally need as objects of amusement on stunts! 

 

Coming to terms with how this affects my ability to be a mother/partner to my family has been an insight for me as I had no idea I was so controlling! Learning to ask for help and not be a martyr about things has been a challenge and driven my family nuts! It saddens me that I may not be able to engage with my children in the ways in which I hoped due to the restraints my body puts upon me but in many ways the illness has brought our family closer than ever and we have laughed and cried together and become a little more aware than others how precious we are and how time is not a friend.  

 

Acceptance has possibly been the most difficult part so far, as well as trying to find the energy to keep fighting.  I have met some lovely folk along the way and reassessed and prioritised what is important. I am moving forward with a renewed outlook and hope for the future.

© 2019 Relapsing Polychondritis Awareness & Support 

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