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Rebecca Barnard

2016-09-22 10:25

Georgina’s Story

I was diagnosed with lupus when I was 32 after making many visits to my GP surgery as well as to A&E. For years I was told it was all in my head and that I suffered from depression. At that time I was running a business, had a young family and was working long hours. I knew that the pain was very real and that my body was no longer working in the same way that it had - it was as though I had a very heavy person clinging to my body, restricting my movements and making very simple tasks exhausting. I gave up playing sports, as well as tap dancing, as both became physically impossible. One GP treated me for water retention and told me not to visit A&E as he would phone ahead to ensure no one would see me. He believed I was a time waster. This was a low point and a few days after this I suffered liver failure for the first time.

Finally, health care professionals began to accept that my problems were not in my head, and a biopsy of my liver and kidneys confirmed that I have SLE (lupus). My jaundiced skin, hair falling out and hands curled with arthritis, as well as huge pockets of fluid throughout my body, supported the diagnosis. It is worth mentioning that prior to the biopsy I was repeatedly asked if I was using drugs as well as whether I was promiscuous. My body was regularly checked for track marks and sexual health questions were repeated at various intervals. I'm not sure if that is a standard line of questioning for a married working mum of two with no drug or sexual history on file.

Over time I have learnt to listen to my body. I recognise indicators that I need to rest and attempt to do so, although it isn't always possible. I try to stay active, even if it is a slow walk to the park or keeping my hands busy when they stiffen with arthritis. I used to play the flute but now find it almost impossible. The sensation in my right hand across three fingers has been particularly bad following a long flare which resulted in restricted movement along my right side. On occasion, gripping objects can be trial and error. I feel tired most days but it isn't a regular tiredness that will improve with sleep. It's that feeling you have when you haven't slept after days of worry or a crisis. It's a sickening feeling which is not only frustrating but annoying.

My health has definitely deteriorated over time; I have a lot of flare ups which have resulted in various medical interventions and I will always have to take steroids to keep my liver-function at an acceptable level. I now accept that pain is a part of my life and that I will experience it every day. Sometimes, I can manage it with mild interventions and other days it requires me to stay at home and use stronger medication.

Brain fog ... those days when word association games are the norm. I have called a 'tomato' a 'circus', I have stood in front of the kettle and wondered how the water gets in to make a pot of coffee, I might have everything I need for breakfast and yet the process to make that happen can feel so complex that it is beyond my capabilities.

Writing emails or texts when experiencing brain fog is a worry for me, and I restrict communication to family and friends on really bad days. I think my brain fog stems from lupus. I know that my brain does have a huge capacity for detail and memory: I have always been able to recall conversations, including fine detail for as long as I can remember, and I also remember documents, sheet music as well as profiles. However, during brain fog, my head is like a bowl of dishes that somebody is washing, confusing processes and association.

I was diagnosed with fibromyalgia by a rheumatologist after various complaints of tender points in my neck, shoulders, hip and knees. The muscle aches and restless legs also played a part. I was initially treated with a Parkinson's drug for restless legs and then moved on to quinine. Neither worked and I was then advised to take paracetamol!

I take various drugs at present: hydroxychloroquine, prednisone, diazepam, tramadol, prochlorperazine, paracetamol (for fevers only) as well as thyroxine, Voltarol, diclofenac and omeprazole.

The frustrating part in having an autoimmune condition is that you become an enigma by default. You never really know which problem is causing which symptom. You also learn to be dismissive of your body and what you can tolerate in pain. I personally find that I have a greater knowledge of my condition than any GP to date.

The problem I encounter time and time again is the label "lupus", once you have this label GPs shy away from treating you. Every time I want to talk about a health issue I find myself in the 'specialist zone' and wait for a referral to see my rheumatologist. Not only is it unnecessary, it is infuriating.

I manage my conditions myself and often wait until the point of crisis before I call a specialist.

I take regular medication, eat a healthy diet and exercise daily. I am overweight, but aside from this I am doing ok. I find animals really therapeutic and having my dog, Monty, makes sure that I exercise every day because he relies on me. It is self-motivating knowing you are responsible for someone else. Even during bad days, I can be seen shuffling along with my dog, and likewise on a good day, I am spoilt for choice surrounded by beautiful Cotswolds countryside. Walking also helps my arthritis.

I don't feel supported by medical professionals who are specialised in this field as my health is often complex and not within the remit of one individual. I gain more insight and understanding from support groups like LUPUS UK.

I'm sure that those who know me would say that I am a happy, determined and unstoppable individual. I love life and enjoy it all that I can. My liver specialist told me I wouldn't make my 40th birthday; I will be 45 next year. I trust my instincts and never accept restrictions imposed by others.

Georgina and her dog Monty