Judith Orford                                                                                     Print This Story......  

I was diagnosed with Lupus during 1993 when I was 50 years of age.

Fourteen years ago I was working full time in the NHS and studying for a master’s degree, so life was pretty busy and challenging. The first thing that I noticed was the pain and stiffness in my joints. My hands were particularly troublesome as I couldn’t straighten them in the mornings; it was so weird. It was so painful to get dressed and do anything in the kitchen. At the same time I had bouts of giddiness, flu’ like symptoms and migraine headaches with visual ‘flashing zigzag’ disturbances. My GP was at a loss to know what was causing this. I did suggest to her that I felt it might be Lupus and she went away to look this up in her medical textbook. As a result she referred me on for a specialist consultation and I had to wait an agonising two months for an appointment. In the meantime, I had one bout of eye trouble where I lost my eyesight temporarily. It was discovered that I had Anti-Phospholipid/Hughes Syndrome (sometimes called ‘sticky blood’) which had probably caused a clot to form in the blood vessels at the back of the eye. I started taking a small daily dose of aspirin for this and was pleased that this stopped the migraines. I have not had a headache since.

The reason that I felt I might have Lupus was that I had a suspicion that this had been brewing for some time but that I was not told. There had been some strange and inexplicable medical things happening. One of these was that when I was pregnant with our first son at 21, I had had a false positive Wasserman Reaction. This was a test for syphilis that was carried out on all pregnant women at that time. Later, I started with monthly migraine headaches. This led to the discovery that I had thrombocytopenia with a dangerously low platelet count and in addition I had severely heavy periods. It was all very strange because apart from these problems most of the time I had loads of energy and felt pretty fit and we were blessed with three beautiful sons. Two major operations ensued, one a hysterectomy for the menstrual problems when I was 32 and then a splenectomy much later to correct the thrombocytopenia.

Currently I am on a cocktail of medications, some to keep the Lupus under control (Prednisolone, Hydroxychloroquine, Warfarin) and others to correct the side effects that this medication has caused (Nifedepine, Lansoprazole and Strontium Ranelate). I have always had a loathing of medication but have come to accept that it is a necessity and I must swallow them all every morning without making a fuss.

I am one of the lucky ones. Learning to take each day as it comes is good; learning not to worry too much about the future is essential; and making the most of the good things in life is vital. I am endeavouring to focus on the things I can do and not on the things that I have had to give up because I cannot do them now. I have to cope with a chronic feeling of being ‘off balance’, hands that have become weak and somewhat deformed due to chronic swellings in my finger joints and painful feet. It is really hard and from time to time I do get despondent but there is always someone out there who is much worse off than me. This thought helps to pull me together.

To have such an amazingly patient husband and loving family who are still with me despite everything is a joy to me. Over the last 14 years we have been through many ups and downs because of the Lupus and I have been concerned that my husband, Jim, might just get fed up with it all and give up on me. But no, he is still so supportive.

My main life goals are to be as independent as possible, to give back all I can to my family and friends and find absorbing interests. Because I have had so much help from the NHS I feel I want to do something to help others. This is why I have recently decided to play a more active role in the West Midlands Lupus Group. I find talking with people who have Lupus to be very supportive. We have such a lot to offer one another. But I didn’t always feel this way. Until recently I wanted to forget that I was ill and to avoid being with people who had Lupus who seemed worse than me. Now I am more accepting and less anxious.

Lupus has made me kinder to others and more patient with people. I think I am a more humble person and do try to be understanding of others. At the same time I have worked on becoming more assertive, like saying ‘no’ when I don’t feel I can cope with something. Life in the slow lane gives me time to reflect and decide what I really want to do. Also, since I took early retirement in 1999, there has been the opportunity to start new interests such as art; becoming a member of a book reading club; joining a political party and enjoying our new acquisition, a little narrowboat.

Long may it last!

I am always very happy to talk with anyone else who has Lupus. I would love to see more people coming together through LUPUS UK to work together to find ways of raising the profile of the condition and to offer support to those who have it or are affected by it.
 

Print This Story......