Rani is 35 and lives in Birmingham, West Midlands.
On 29th July 1999 I woke up with what I thought was just a headache. I went into work as usual in a bit of a grump because of the pain, which I had never had before and started to plod on. A lot of my work is on a VDU so throughout the day this was making the headache worse. It got to the point that I couldn't keep my eyes focused or hold my head up and I was feeling extremely sick. It became so unbearable I phoned my manager and she told me to go to the doctors and then home.
By now I was really distressed. I phoned my husband to come and get me; I was based in Wolverhampton at that time so it was going to take him at least 40 minutes to get there. Can you believe it of all the days there were road works so it took him twice as long. Of course by this time I was so upset I had my head on my desk and one of the ladies I worked with sat with me until he got there. Finally, he arrived and of course we promptly got stuck in road works and traffic on the way to the doctors.
Once at the doctors I had to wait again, he told me that it looked like I was suffering from a migraine (I'd never had one before so I didn't know the symptoms). He prescribed some medication and told me to go home and rest. I tossed and turned all day and all night for 3 days and nights, I couldn't eat or drink and became delirious. I had to keep a scarf tied around my head to try and control the pain; it was obvious by this time that the tablets were not working.
My husband then called the doctor out because all of sudden in the night my temperature shot up and I was burning up. I was promptly admitted to Selly Oak Hospital I think they thought it was meningitis (I remember the words lumber puncture and I think I used some strong language in saying NO WAY!).
I was put through the most rigorous of tests; blood tests, heart, liver, kidney scans, x-rays, MRI scan, brain scan, being poked and prodded by different doctors. It all started to get to much for me because I was so tired and all I wanted to do was sleep. I had no appetite so they stuck a drip on me. During all this time I hadn't even realised my weight had dropped to just 6 stone.
Eventually my consultant and his team came to pay me a visit it all looked very serious, that frightened me and because I was on my own. I was asked when my husband would be coming to visit me I said I wasn't sure because they wanted to speak to him also. He appeared just at that point so that was a blessing.
My consultant proceeded to explain that I had fluid on the brain, around the heart, had become anaemic and had raynauds in my hands and feet. We were also asked if we were planning to have children, which I thought was a strange question and then my mind went into overdrive. I thought 'oh my god there's something wrong I've got cancer or something I'll never have any children'.
Then I heard the word 'Lupus' for the first time. I just looked at the consultant waiting for him to say "these are the tablets you need to take over a certain period of time" but that wasn't to be the case as I was to find out when I was discharged.
My husband and I were given a very small amount of information; the bit that has always stuck in my mind is life span is usually 5 years. Counselling wasn't offered, we were just sort of left there wondering what to do next. I started to panic, even more because after the doctors left the priest came to see me. I just thought that's it he has come to confirm my worst fears, I didn't know he was visiting everyone because I was in my own room. (I am happy to say that I do laugh about that now!).
One of the doctors on the team came to see me later on in the day and went through the medication that they were going to put me on and the side effects etc. It was only then that I realised I would have to take medication for the rest of my life to control this incurable disease.
Once my medication had been sorted out a nutritionist also came to see me to try to get me to eat again because I was still having problems with my appetite. They put me on 'vitamin drinks' to get me to eat, that's what you call torture!
A couple of days after starting on Hydroxychloroquine (anti-malarials) I was told that I would be allowed to go home but would have to attend as an out-patient. I though 'fine I just want to go home'. After about a week or 2 I was starting to have trouble adjusting to the tablets prescribed. I was always at the doctors and because my eyes were becoming blurred I was sent for an eye test. I also started getting mouth ulcers so I was taken off the tablets to be on the safe side but nothing else was prescribed.
Some time after I was taken off the tablets, I started to get aches and pains all over and always seemed to be struggling to move about. Then I started to loose my hair and get a constant paralysing pain in all my joints. Everything was red and sore especially around the joint areas, I could only lie on my back and even to try to brush my teeth was absolute agony. I couldn't do anything, even as simple a task as getting out of bed, getting dressed, walking etc. I needed help going to the bathroom as I couldn't even remove items because of the pain in my hands, wrists and fingers. It felt like someone had dragged me everywhere, beaten me black and blue and kicked each part of my body head to toe.
I couldn't get out of bed to walk to the toilet and when trying to sit down I had to hold onto to someone or something and very very slowly ease myself down. This had to be the most embarrassing time of my life. I didn't want someone looking at me in all my glory, my husband wanted me to have a carer and was constantly getting in touch with social services.
It felt different in hospital when they cared for you, I felt safer in hospital because I'd been there so long. I started to feel that it was almost home, because if something went wrong there was always someone who would check it out for me. At home I was starting to feel paranoid, with every pain inside or out I though "oh my god what was that? Should I phone the doctor or shall I just go to casualty".
Once I was admitted into hospital it took about 2 weeks to get a diagnosis of lupus. Before all this happened I remember having chest infections, cold hands and feet (which I now know is now Raynauds). I also suffered a miscarriage, which was one of the hardest things I have ever had to deal with. At least 2-3 times a week I suffered hot and cold sweats, which left me with a red rash on my face and other areas of my body. I was left totally drained and stiff the next day. I think on and off I suffered like this for about 1-2 years I just thought it was personal stress that I was facing at the time.
I'm still in pain everyday and always battling against it. It wears me down and then I'm exhausted by the end of the day because I've been trying so hard. Everyday I have to lay things out for the next day otherwise I forget, there has to be some order in which things go like in the bathroom or for getting dressed. I can't eat first thing in the morning because normally I'm sick or have a nose bleed.
Over the four years I've got used to these things happening. I've also found that if I don't follow the routines that I've set up it kind of throws me for the rest of the day. I know people may think that's strange but it's hard to explain. I still attend hospital as an outpatient every month and have regular tests every 2 weeks. With this happening regularly it has given me some confidence, because if something was wrong at least it would quite easily be picked up - I hope!
My treatment at present is Prednisolone 7.5mg, which has come down from 20mg.
I also take calcium and vitamin D, and multivitamins just to keep the old body going! I have also had to start taking Epilim because just over two years ago I started to suffer fits and consequently am now epileptic. I have recently started on Methotrexate tablets because over the period of time the steroids are starting to cause damage. Apparently, this drug is much better for you if the body can accept it. Hopefully, it will help me get rid of this extra weight that the prednisolone (steroids) has caused.
I remember when I was started on the Azathriapin tablets because I started them in the summer. I wasn't aware at the time when I was feeling delirious and hot and bothered it wasn't the weather but actually the tablets. The poor nurse came banging on my door to tell me to come off them straight away - which was frightening. Those tablets also made my liver go haywire so after waiting for it to go back to normal, which was taking too long and then the consultant thinking it was the lupus affecting it I had to have a liver biopsy.
That was the most painful thing I have ever had in my life. When all these things happen to you I think your body goes into this traumatised state and you will try anything and everything to make sure that you do not have another relapse because you know you may have to go through all these things again. To be honest I don't think I could cope again, it takes one stressful or upsetting thing to trigger it off and years to get over it.
I was so independent before the disease that I find it so hard to ask for help because I feel its making me feel weak. The worst of it is when I need to use my wheelchair. The majority of the time I tend to use walking sticks to get around, people notice but not as much as when you are in a wheelchair. The expression on their faces is so predictable it's sort of like "aah what a same, she's so young", these are just some comments I've heard or they bend down to speak to you really loudly as if you are deaf or can't understand what you are saying, it makes me laugh.
I returned to work only 6 months after diagnosis because we had just bought a house and had a mortgage and bills etc to pay. I felt I had to return. looking back now I returned before I was really well enough. I was not told about any benefits that could be claimed or any organisations that could assist me, my impression was that if you were employed full time there was nothing you were able to claim.
My husband found it extremely difficult with his work and other family commitments. He was having to time off to come to the hospital, then home and back to hospital for appointments. It got to the point that he was constantly being warned that he was taking too much time off and even when he explained the situation he was basically told if things carried on the way they were he would be disciplined and sacked. Before this happened he thought the best thing he could do was to leave of his own accord. If we knew then what we knew now regarding employment law maybe we would have been able to approach things differently. This was another reason for returning to work so soon.
I found it extremely difficult because I felt that I wasn't the same person anymore. I was nervous and still feeling withdraw from society because literally for six months I had just stayed indoors. I felt that I needed to be taught how to do things again.
I returned back to my old desk and found it extremely difficult to work with the same set up and the fatigue was amazing I just could not keep my eyes open for more than a couple of hours. Thank God work suggested that I start on reduced hours and gradually built them back up depending on how I was feeling.
After discussion with the Health and Safety Officer I was informed of the adjustments that I needed to be made to make it more comfortable for me to work e.g. setting up my computer and a chair to help me feel comfortable because of the pain.
It was during my return to work that I found out about a course that was being run for people with disabilities. I put my name down immediately because I didn't know what to do or who to turn to I was completely in the dark.
My manager supported my decision to attend this course which was a week long and away from home. Although she was concerned that it might have been too soon for me to be away and I explained where else would I find out what I needed regarding laws, advice etc.
I thought that at least we would all be in the same boat and I might even meet someone else with lupus and share experiences. I must say the course was extremely informative it taught me about my rights e.g. Disability Discrimination Act, Disability Rights Commission. All of the information was there for us to take away and read.
This information helped me to educate my employers and myself so that we were aware of what organisations and equipment was available. I must say my company have helped every way possible and when adjustments need to be made with the correct guidance they try their best to accommodate me.
I had to visit their medical advisors so that they were sure that the correct adjustments would be made. Through the 'Access to Work' scheme I have a taxi that brings me to work and takes me home. I also have my own office to reduce the risk of infection (I was originally based in an open plan office with the rest of my team members). I also have a special chair that supports me and my head because of the constant pain, a foot stool to rest my legs and a humidifier because of the change in temperature (depending if I go hot or cold).
Since attending the course for people with disabilities a network has been set up where we all keep in touch and any new legislation or guidance that comes through. Newsletters give us some guidance on where to turn to if we feel we need assistance with anything.
I have recently started exercise on prescription, which my hospital told me about and was available on referral from my doctor. I had an excellent induction and a suitable programme has been set up for me.
I now have a mobility car to get to help me get to hospital, doctors, exercise and some sort of social life. The car has been a God-send because I've always driven and not being able to drive for nearly 2 years; waiting for taxi's and family members to take me to appointments drove me absolutely potty. I'm not the most patient person anymore.
I am also the secretary of our sports and social club at work, which organises events, party's etc.
I have started a NVQ to help develop myself at work and hopefully move to another area.
I have also put my dog's name for to be trained as a Disability Assistance Dog.
It's funny how life's priorities change as long as I'm happy nothing else seems to matter. You can't keep me down for long - I've spent long enough feeling the victim it's time to strike back as they say.
I have found myself an excellent hobby - flower arranging which is so therapeutic.
How does Lupus affects your life?
I don't go out like I used to, I always have to take someone with me or keep someone informed of my whereabouts. I can't use public transport, waiting at bus stops etc I can't stand up for long or walk very far without being in pain. I suffer from terrible dizzy spells just by doing a simple thing as walking round the supermarket. The worse thing is even though you have your sticks people still bump into you without so much as a sorry. A woman and child were shopping the once and she was dragging the child who promptly knocked my stick and I toppled the mother didn't even apologise - I'm sorry to say our society is not what it was.
Trying to go shopping for clothes is even worse, walking in and out of the aisles and then trying to try things on especially when you need help with buttons and zips. I remember an occasion when I tried on some items I think it took me about an 1 hour and when I came out of the changing room the items I didn't want I was told by the assistant to put those items back on the various racks no assistance was provided.
I tend to use catalogues more it saves the hassle and most shops don't cater for people with disabilities because of drugs my weight tends to go up or down and in all the wrong places - where are the clothes with elastication??!!!!!
I was in a well-known supermarket on another occasion. I went into the store which was only a very short walk to get I wanted, which was a large bag of dog food. I asked for someone to carry to my car, the assistant said "why can't you do it?" I explained that I couldn't and she went off in a huff saying "I suppose I'll have to do it then".
See what happens when you have a hidden disability and don't take something with you to show something is wrong e.g. walking stick, when you need assistance it is not readily available.
When I first returned to work everyone was sympathetic but over time when I have learnt how to control things and pace myself taking regular breaks. I think people tend to forget - I'm not sure if that's a good thing or bad thing.
I do feel ashamed about asking for help because your feel that sometimes when everyone is busy that you don't want to disturb them so you either struggle or just wait until someone is free and then you end up getting behind on your own work.
I think some people find it hard to accept, they see it as special treatment or favouritism they don't even know the half of it. I can't go off on holiday like they do, I have to take tablets every day to say alive do they? I'm in pain every day are they?
Sometimes people do say things and it's very hard not to respond with a rude comment.
All I'm trying to do is plan ahead, government resources aren't what they used be in providing assistance. So I'm just making sure that I have all that I need to assist me and have any adaptations made while I am still mentally and physically able to do.
Other people especially don't understand that we can go out, look well and appear 'normal' one day - and then refuse invitations another. They don't appreciate how our activity levels can vary from day to day, even from hour to hour.
Sometimes keeping a positive attitude is harder than dealing with the physical part of the disease. I used to be a very active person, but the disease changed my life. No-one can see it, so people don't understand. I'm coming to terms with my limitations, but it's the biggest challenge of my life."
How does lupus affect your relationships with family/friends (your social life, how do your friends react to you?
When I was first diagnosed and they could see what was happening to me they were concerned but later they thought that once the doctors had given me my tablets that I would be cured. Time and time again I have tried to explain what my life will be like but they can't bring themselves to discuss it or even understand it.
I have felt extremely let down because I've had to fight it by myself I've read about and spoken to other people with lupus and heard about the support that they have received from loved ones and friends. I can't honestly say I've had that. All I can say is that it was a good job I had extreme fatigue and slept my days away at least I didn't notice the lonely days passing by in hospital and home.
They see me trying to lead a normal life, going back to work, occasionally meeting friends if I'm not to tired. So they think everything is back to normal what they don't see is me in the morning trying to get up and getting dressed, 'defrosting' as I call it. Nor do they see me tossing and turning at night because of the pain. At least one of my sisters who lives nearby does a lot of things for me, if I didn't have her I don't think I would be going to work. She does my house chores, cooking, ironing, shopping and all the usual fetching and carrying.
I'm afraid the Asian community doesn't look to kindly to people with disabilities I've had the comment 'you must have done something really nasty in your last life or that's what you get went you say something nasty to someone'.
I've had comments like 'don't come here in your wheelchair' or 'why do you have to use your sticks you look fine?' From what I've experienced you can try to explain as much as you can but it goes in one ear and out the other.
When there have been family functions tradition is that all the young ladies married or single should take care of the older ones, carrying out the serving and clearing up and boy you should see the looks and comments I got all because my mom told me not to do anything! When you try to explain the situation they just stay away from you and look at you as if they are going to catch something from you.
Because of this attitude I've stopped attending any Asian get togethers. I've found my culture to be nasty and inconsiderate, they would not even contemplate making an adjustment for you - obviously this is only my experience - I haven't had a good one yet.
I haven't been to any of our religious temples yet and have been wondering about their outlook regarding people with disabilities and if they are aware of the reasonable adjustments to be made starting October 2004 regarding wheelchair access, disability assistance dogs etc.
I also have a few friends who help me out and try to cheer me up when I get down. I was talking to one of them and mentioned that I was in the process of typing up this story and he wanted to know if I could get Wesley Snipes to play him well I said I didn't think Wesley would do him any justice - I wouldn't mind Will Smith though!
Unfortunately my marriage has completely failed I suppose there were a variety of things, he had other family commitments and I think I just became a hindrance to him. He saw other guys his age having fun and wanted the same I suppose. He couldn't give me the attention I needed or he just simply couldn't cope with it.
I went through a very bad time during this period because everything seemed to be going wrong all at the same time.
My husband and others could see I was trying to get some normality in my life so that meant there was nothing wrong with me and I was obviously putting it on. This comment really got on my nerves and I would get so angry that it would cause me to end up having a flare.
I don't have much of a social life I can occasionally go out for a meal, as long it's not too late so that I don't fall asleep during dessert. I don't go to bars, too much noise and you can never get anywhere to sit. I can't go dancing anymore my legs can't take it, only once a year at Christmas I'll try to have a dance and then it's because I know most of the people there and it's a private room which has been booked by our Social Club.
I suppose I've had some bad experiences, which I've learnt a lot from and I've certainly found out who my real friends are. I think the good experiences have come because of the bad. All of sudden its like my mind has gone into overdrive constantly researching and trying to update myself on new changes.
I think if I didn't have lupus I wouldn't be doing half the things that I do now.
Sometimes I feel like I have this clock ticking and I have to do everything now. I would like to ride a Harley Davidson motorbike, jet ski, go in a helicopter and hopefully go somewhere nice and exotic on an aeroplane (one problem fear of flying) and go on a cruise. My last goal left is to meet someone, settle down and have a baby.
I would also like to organise a massive Asian charity event and raise loads of money for our lupus charity and bring hopefully some awareness to my community.
I suppose everyday is always going to be a constant battle but I think of it like this if I've fought it this far I will continue to do so.
28th July 2003