My last three years.
Just after Christmas 2008, I started feeling ill with what I thought was flu. Three weeks later, after 3 appointments, and feeling worse, my GP sent me to Homerton Hospital A&E, and I was rapidly admitted with a diagnosis of pneumonia and the cheery words that some hospital strength drugs would see me back at home by the weekend. Several days later, some rather less cheery doctors mentioned that the antibiotics weren’t working: could they test me for TB and HIV. During this time, I thought I was dying; I made a new will, resigned as Chair of my local constituency political party and started discussing my funeral. For several days, I believed I saw an angel with black wings hovering by my bed. It was the Angel of Death waiting for me. I was calm about this. I know this sounds quite bizarre – and am still open-minded as to whether it was a real angel, a fantasy induced by a very high temperature and heavy doses of antibiotics, or a visual expression of my belief that I was dying.
On the evening of 29thJanuary 2009, I became very ill and next day was transferred to Intensive Care. On 17th March, I woke up having been sedated and unconscious for over 6 weeks. During this period, my life was, apparently, on a knife-edge with my high temperature and general instability leading to periods when I was packed in ice, or even paralysed to stop me moving due to the risk. It took a long time to diagnose what was the problem and it eventually emerged that it was a rare auto-immune disorder called variously Anti-Synthetase syndrome or Myositis with Anti Jo1. Once diagnosed, I was given Cyclophosphamide to inhibit my immune system, thus reducing the inflammation in my lungs.
The illness has left me with profoundly scarred lungs – the gas transfer is roughly half of normal which makes me short of breath when trying to walk at anything faster than a gentle stroll. At other stages, the disease has inflamed my muscles, causing real weakness, and presented with arthritis. If my doctors can succeed in keeping my lungs from deteriorating further, this is not an illness that will kill me (so they say!), but it has nevertheless greatly affected my life.
When I woke up, I hadn’t realized that weeks had passed and took time to understand that I had been unconscious and on a ventilator, with a hole in my neck caused by a tracheostomy. The sheer physical nature of illness is quite difficult to grasp until you suffer it – that you are quite literally helpless and not in control. Television programmes don’t prepare you for the reality of life in Intensive Care – the constant bleeps, the lack of sleep, but also the amazing amount of high quality care. When you wake up, you are on cold turkey as the anaesthetic drugs wear off. I had the most bizarre dreams: one day, I was sure I had been to Birmingham; on another sleepless night, I lectured a poor health care assistant about Joseph Banks and his botanical voyages (my consultant dryly noted ‘wrong time, wrong audience’); while on another day, I believed I was a world expert in Dutch 18th century farmhouse architecture. All very embarrassing in retrospect!
And then there was the physical recovery. I had to learn to walk again. During this time, I was intensely focused – one nurse in ITU described me as ‘the lady who does what she wants’. I vividly remember the consultant, at a time when I had to be hoisted out of my bed into a chair, saying to me gently that, ‘you may never get better than this’; I remember thinking (hopefully not out loud); ‘Yes I bloody well will’. Does a sense of determination help and is it unusual? I’m not sure – the doctors in ITU said I had survived because I decided to, but since I was unconscious I don’t know how I was in any position to reach such a decision.
After 10 days in a general ward, we persuaded the hospital to let me go home on 3rd April and I continued to recover, but it took time to put together an effective ongoing package of medication.
From December 2009, I have been under the care of UCH, both the outstanding Rheumatology and Lung Departments. I don’t know whether or for how long they will keep me going – but I have full confidence in them and believe that I could not receive any better care elsewhere in the world. Thank goodness for the NHS.
My disease is rare. I have grappled with this by trying to read as much as I can understand, which is not a lot since I gave up studying science at the age of 16. But the rareness has meant that its course may be less predictable than other more common auto-immune disorders and this causes some anxiety.
The drug Rituximab has been a life changer for me. From April 2010, I had been free of symptoms until it flared up at the start of this year and, thanks to prompt treatment, the flare has died down. I also take steroids and other anti-inflammatory drugs and regular antibiotics to prevent lung infections. I know that there will be periodic flares throughout my life and am prepared for this. I’m fine provided I don’t push myself too hard. My problem has been that I was always a driven person, trying to cram too much in, and I’ve been forced to change, which is sometimes difficult to accept.
One of the most profoundly upsetting things that happened was my work situation. I had heard that people with serious illnesses experienced difficulty and were not welcomed when returning to work, but I had thought I was different – I’d founded a social enterprise with a colleague, and as I had thought, friend, back in 2004. Without going into details, my return was not pleasant. Eventually, I decided that I could not risk the stress of this situation threatening my health and decided to leave.
I then took a period of reflection when, for the first time, I grappled with the life changes over the previous period and had a phase of profound depression. I’m over this now, have found other things to do – amongst other activities, I’m a charity consultant at Cass Business School, Centre for Charity Effectiveness, specializing in charity mergers and collaborations and am in fact far more intellectually challenged than I had been for years.
I believe that the person who suffers most and who has the most stress is your carer. I’m fortunate to have the most wonderful partner who has looked after me, worried about me and planned our lives, despite her own stressful career as a barrister. When I first returned home, she said she wanted the truth about how I felt – bland responses would not do. This has been really essential; I’ve shared my feelings, both emotional and physical with her at all times and recommend this as a coping strategy.
I don’t welcome my illness, but there is an upside; it has taught me a great deal and influenced how I live. I’m not a totally changed person, but hope now that I am more self aware and able to value the really important things in life – family and friends and a curiosity about life.