Yvonne Norton                                                                                 Print This Story......  
Chair, West Midlands Lupus Group
Vice-Chair and Trustee, LUPUS UK

For 3 years following the birth of my second son I had various symptoms, none of which seemed to fit any pattern recognised by my GP. I even saw a psychiatrist several times before being told, “Whatever is wrong with you, it isn’t in your head.” Finally, in 1975, I was admitted to hospital in complete heart failure.

I was unconscious for 3 days and came round to find I was on extremely high doses of cortisone and 7 pints of fluid had been drained from my lungs. The doctors told me I had ‘a collagen disease’ but they didn’t know which one. I was also asked how I felt about my recent severe loss of weight – that was, perhaps, the hardest thing to take in at the time – I had struggled for years to lose weight without little effect then, when the weight did disappear, I had been too ill to realise it. What justice is that, I asked myself!

Six months down the line my then consultant, worried about the effects the high doses of steroids were having whilst still not controlling my illness, rang Hammersmith Hospital and it was arranged that I should travel down the next day and, probably, stay overnight. Well, the next day, I had my first meeting with Dr. Graham Hughes who promised to ‘sort me out’. Needless to say, that overnight stay stretched into a month! I did return home with my medication modified and my diagnosis - Systemic Lupus Erythematosus - written on a piece of paper which I carried around for weeks until I finally managed to get my tongue around it.

Over the next 10 years I had many hospital stays, alternating between Hammersmith and New Cross Hospital, Wolverhampton. I also took in Droitwich Hospital and the Eye Infirmary and Royal Hospital, Wolverhampton. I then made contact with Dr. John Delamere at Dudley and became a ’regular’ at the Dudley Group of Hospitals. A fairly lengthy stay at St. Thomas’ and visits to the Queen Elizabeth and City Hospitals, Birmingham, were also added to the list. My general medical care is now managed by Dr. George Kitas and his colleagues at Russells Hall Hospital, Dudley.

During the progression of time I have also developed Sjögren’s Syndrome, Raynaud’s Syndrome, Irritable Bowel Syndrome, high blood pressure, lung problems and scoliosis of the spine. I use elbow crutches indoors and a wheelchair outdoors. I also need to continually wear a neck collar and wrist splints. Due to my lack of mobility, joint pains and breathing problems I am unable to leave the house alone. Lupus and the various medications I need have also changed my appearance considerably over the years.

During February, 2005, a major infection in my right hand resulted in an emergency admission to Selly Oak Hospital, Birmingham, where I was told I would probably lose my hand. Thanks to a wonderful surgeon, Mr. V. Rajaratnam, who performed 3 operations, my hand was saved and, although it was clawed, I was able, with help from Occupational Therapists and determination, to gain a good degree of use with it. A further operation will, hopefully, loosen the tendons in my fingers and not only give my hand a better appearance but, also, give it more use.

Having Lupus means that you do not know how you will be feeling from one day to the next. It often means that you may have to cancel arrangements for outings etc. as you may be feeling too fatigued to make the effort to get ready and go out. You may need to rest for a few hours before you do go out and then be unable to function properly the next day. It can be difficult coping with changes in climate when the cold weather causes pain in your fingers and toes and the hot weather and sunshine bring rashes and joint pain. The good times when the symptoms are not too bad mean you can have a fun day out with the family, enjoy holidays, catch up on outstanding work or, even, reduce your medication for a while – this can give a great feeling of satisfaction and success.

Practical changes to my life have included an extension being built onto my home to provide a downstairs toilet and office area as stairs are difficult. I also need to use certain aids such as special cutlery and cups. The main changes have been to my actual lifestyle. I was unable to run around with my sons for a large part of their childhood, however, I was at home to help with homework and to listen to them and encourage them in their interests. I had to give up paid employment, however, this has meant that I have been able to establish the West Midlands Lupus Group and become so involved with LUPUS UK. I need help with housework, however, I have learnt over the years that there are more important things in life than having a pristine home – children will remember love and affection not whether the furniture was polished every week. It is not possible to go away from home, whether it be overnight or on holiday, without much advance planning, however, I still travel abroad and attend the many Lupus Meetings and Conferences even though it means taking extra luggage and organising wheelchair transfers etc. I have been unable to use public transport, however, Pete, my husband has been an excellent chauffeur and ambulance personnel have been very kind over the years. I have been unable to push my grandchildren in their prams or take them to the park, however, I am always here to read to them, help them with drawings and play games.
My medication includes steroids, antimalarials, NSAID’s, antispasmodics, painkillers, anti-depressants, antihypertensive pills, anti-ulcer pills, diuretics, artificial tears, HPF sunblock, skin creams. Over the years I have had many sessions of hydrotherapy and physiotherapy. I use a TENS machine and heat pads. It must be remembered that so many more doctors now know about Lupus than when I was initially diagnosed and more is known about the various medications so more caution is taken in prescribing. This means that most Lupus patients will now receive lower doses and the side effects will be lessened.

My advice to other Lupus patients is:
1) find out as much as you possibly can about Lupus
2) find a good medical consultant who really knows about Lupus
3) sort out the correct medication for your symptoms
4) explain the illness and the effects it has upon you to family and close friends
5) make any changes which may be necessary to your home/lifestyle
6) put on a smile and get on with living!

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