Having symptoms from the age of 10 years old
My consultant believes I have had CVID symptoms since I was 10 years old. I was a lively, inquiring child who loved to dance and I nurtured a dream of being the next Fonteyn. My hard work paid off and when I was 17 I was offered a place at the Royal Ballet School in London. However, the journey had been hard fought not only because of the competition but also my biggest impediment, my health. I realised that I would not be able to sustain the rigours of the ballet world mainly because I lacked stamina and became easily tired. I had no control to measure whether or not my constant ear infections were also part and parcel of the problem and assumed they happened just because I was ‘prone’ to them. The family GP assumed I would ‘grow out’ of them and told me to eat more iodised salt in case I had an underactive thyroid and gave me iron pills for possible anaemia.
Getting on with life
I married and had four children and did a degree when the youngest was a baby. I worked and found that I was finding it harder to sustain the workload of family and paid work. I would come home and collapse, exhausted, into bed and I was increasingly becoming ill with chest infections and flu. I went down the complementary therapy route and trained as a Reflexologist, a Yoga teacher and Acupuncturist. It became a joke in the family that I could help other people with their problems but not myself!
Eventually a diagnosis of CVID!
I have lost count of the times I had pneumonia, flu, chest infection, gastroenteritis and also asthma attacks that ended up in A and E. It wasn’t until I changed GP practice and had the great fortune to have a wonderful asthma specialist nurse who started to wonder why my asthma was ‘a-typical’ and why it was so difficult to control. She persuaded my GP to refer me to a
good respiratory specialist who not only did the necessary scans and tests but also ordered blood tests to check my immunoglobulin levels. The result of that was eventually a diagnosis of CVID! I have left out all the other tests etc ordered by other GPs, and hospital checks with differing specialisms over the years, which must be a common story for all people with PIDs.
Diagnosis was a relief both physically and emotionally
Having a diagnosis finally for CVID was such a relief both physically and emotionally. At the time of diagnosis I was very ill and felt that I didn’t have much time left on this earth but not only that I felt that people around me viewed me as somewhat of a hypochondriac because I had no diagnosis to hang my various illnesses on. This may or may not have been a projection of mine but I felt so vulnerable and so alone even though I had kindness around me.
I am so grateful for being able to be back in the land of the living and although I still get ill from time to time I know that I have a great team behind me at the Royal Free Hospital; the doctors, nurses and a psychologist all of whom have enabled me to extend my life and feel supported and I am so lucky.
My treatment at present
At the moment I have sub cut infusions of plasma weekly at home and which my husband helps me with. For personal reasons I shall be returning to the Royal Free before Christmas to have three weekly IV plasma infusions.
Looking at the positives of my situation
I don’t want to be seen as a diagnosis but as the person that I am and do not want to feel that my life is any less because of my illness. I feel that the positives for me of my situation are that I have enormous empathy for anyone coping with a chronic condition and what it may mean for them. Yes I do get ‘down’ from time to time and do feel sometimes resentful that I have not been able to fulfill many of my ambitions but I try to accept the things I cannot do and change the things I can. It’s not easy sometimes but the small things in life are so often the big things, the meaningful and I try to remember this on a daily basis. I have found meditation and yoga very helpful and cognitive behavioural therapy (CBT), also known as ‘talking therapy’, which, I have with Dr Mari Campbell, clinical psychologist at the Royal Free Hospital, from time to time is invaluable and she is a great asset to the medical team who are doing all their fantastic physical work.
My top tips are:
Seeking out people that are positive and supportive and doing things like arts and crafts are invaluable support systems for me. Also, trying to pace myself and resting when I need without, hopefully, limiting possibilities for more to enhance my life. Overall I feel very blessed.
My top wish is:
For everyone with a PID to have the opportunity to access a clinical psychologist to have CBT as part of their care. It can make a huge difference to how you feel about your condition.
Posted November 2014