I am Eddie Phillips. I am a 58 year old retiree and primary carer for my wife Julie, who has suffered with lupus for over 30 years.
A synopsis of my journey so far
Julie was diagnosed with Polymorphic Light Eruption (Discoid Lupus was not a diagnosis back then) following our honeymoon in Florida. Following this diagnosis, life returned to normal, apart from a period following a diagnosis of a genetic issue that caused Julie to have a full hysterectomy. The lupus was controlled with medicines and creams, so it did not affect our day to day living.
We emigrated to Australia in the late 90’s and during the first months, Julie was taken seriously ill whilst walking to work (in Summer). She was subsequently hospitalised and the tests showed that she had Systemic Lupus. Again, a small amount of investigation was done but we just got on with life, which now included the odd trip to a specialist.
We went back to the UK in 2009, for a period of 5 years, following the death of my father. It was during this time that Julie started getting worse, going from full-time work to part-time and eventually having to give up. The UK health system was not really set up for lupus and we had a terrible time finding specialists who where able and willing to help. It was all too hard for them, and with Julie’s history of Deep Vein Thrombosis (DVT) and Pulmonary Embolism they were loathe to do any type of surgery (not even a gastroscopy).
We came back to Australia in 2014, since then we have added Fibromyalgia, Anti-Phospholipid Syndrome, and Early Onset Alzheimers to the mix.
I gave up work two years ago to begin caring for Julie on a full time basis. So now I am the housewife, cleaner, driver, admin assistant and nurse. To be honest it is draining and there are days that I am down (depressed at worse), but it is like having a 24 hour bug. I get up the next day and get on with caring.
To help cope, and to help others, I have started a Facebook Support Group and have a blog aimed at carers. Writing the blog has had a therapeutic effect and I hope this will help other carers as well.
My biggest lessons
- Communication is the key, always letting Julie know how I am feeling, allowing us to discuss it always helps, it keeps her informed on how I am and it lets me know how she is (although I can usually tell).
- The other thing is Honesty. Don’t bottle up how you are feeling, it does not help. Talk about it and get help if it is needed.
I saw the following quote from Deepak Chopra and I believe it is true of all people and especially the Lupus family –
“You must find the place inside yourself where nothing is impossible”