I am a 52 year old married woman who up to the summer of 2011 was working as a special needs teacher in a primary school, I had helped my brother and sister care for my elderly dad who had a stroke 2 years previously and for my Mam who has Alzheimer’s and is now in a nursing home. I have two aunts in their 90’s who live locally. My life was busy and I wasn’t surprised when I began to feel extremely tired, had some fairly bad headaches and had what I thought was a stress pain in my chest, towards the end of June 2011, the final week of the school year.
The previous week I noticed a lump on my neck but thought I had bruised it with the car seatbelt and didn’t do anything about it. That is until I woke up one morning unable to smile as one side of my face seemed paralysed. I promptly went to my GP who was more worried about the lump on my neck than my face and what she diagnosed as Bell’s palsy. I subsequently spent a week in A&E where they scanned my neck and the lump I noticed was diagnosed as an aneurysm on my carotid artery.
They sent me home to wait for an out-patient appointment at the stroke clinic in the Mater Hospital in Dublin. As time ticked on (ten days later) and after my husband had made numerous phone calls I was admitted to the acute stroke unit in the Mater. My symptoms were shooting headaches, extreme exhaustion, absolutely no appetite (I hadn’t realised I had lost about 2 stones in weight and was now only 7stone), the pain in my chest and loss of central vision in my right eye (which occurred 3 years previously and, after 9 months of different experts trying to find the reason, a neurologist had thought it was the beginning of M.S.) and which would now be correctly diagnosed.
With inflammation markers showing in my bloods they initially put me on an antibiotic drip for a week. Unfortunately, that made no improvement. My haematologist, my consultant and the vascular team (who performed many tests and analysed my symptoms) decided to treat me with a very high dose of steroids for Takayasu, a type of Vasculitis which affects large blood vessels like the Carotid Artery and the Aorta. More or less immediately my inflammation markers started coming down. Two weeks later I was delighted to be allowed home with a concoction of meds.
It has been over one year and I am now thrilled to say my steroids have come right down (as has some of the extra weight I gained …up to 11 stone!!!). Before I got Takayasu I was an avid walker doing 4-5 miles easily. Due to extreme exhaustion I was hardly able to climb the stairs never mind go for a walk. Thankfully I’m now back walking 2miles most days and gradually building up my energy levels. My vasculitis is well under control. The only problems are as a result of the meds as I now have diabetes type 2 and sometimes have difficulties getting a night’s sleep. I still have to be very careful of infection and see my G.P. for regular blood tests which my consultant checks when I see him every 3/4 months. Every so often I have what I call a pyjama day where I’m so tired I just relax at home and don’t do anything strenuous. My very supportive husband can read the signs and now cooks + cleans, and generally keeps the show on the road. My plan is to be back at school next year all going well.
One of the best things that I did when I was discharged from hospital was to contact others who are similar to myself with Vasculitis. I did this through what is now known as the Vasculitis Ireland Awareness charity. They have all been so consoling and informative especially Julie who has been the person to get us all together and even though she herself also has Vasculitis she organises the whole charity as well as excellent conference speakers to answer our numerous questions and calm our worries. She and her family also find time to arrange fund raising for our very young charity. She is an inspiration to us all.