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Aloma's Story

Friday, 30th November, 2007 and my life changed forever. I had not been feeling well for quite a while but kept putting it down to hormone problems and my hysterectomy that I had had a year earlier. I had invited people over for the evening and had everything prepared so decided I would get a quick workout in and went off to the gym like I normally did. Because I was short of time thought I would just do a warm up on the treadmill and two rounds of circuit.

I ran on the treadmill only for 20 minutes (I normally did 45 minutes) - finished one round of circuit - stopped for a recovery, picked up my water bottle and as I started to drink an instant intense pain wracked my body - first my head - thought - that's a bit weird - gee - am getting a bad headache - then another wrack of pain down my back - sat down - more pain - more intense and becoming excruciating - I suddenly started to feel strange and thought to myself I needed to get down to my car (did not want to embarrass myself by a scene inside the gym) - after all I had been a gym owner and was a personal trainer/fitness instructor myself - how stupid I would look.

 

I slowly and painfully made my way out to my car - just - now in A LOT of pain and starting to feel somewhat panicky and realising that something was not right at all - I managed to open the car door and collapse into the seat - the pain was becoming so intense and now I was crying - every second was worse and I started to think that something was definitely wrong - I tried to phone my husband but he was out or range - tried my daughter and got her voice mail - tried my nearest friend who was by my side within five minutes - she phoned my GP who said it sounded like I was having a brain haemorrhage but could not be sure and was to get me into her surgery straight away - (my daughter had arrived also by this stage) and Margie (my very good close friend) and my youngest daughter, Dana drove me up to my GPs surgery by which time I was starting to rant and rave and crying desperately and losing it...Unknown to me and what was going on around me at this stage she had phoned other specialists for a second opinion and they had told my family (apparently my husband had arrived and my brother by this stage) that I was indeed having a brain haemorrhage and an ambulance was called and I was taken straight into ICU and was in a very critical condition.

 

That was the start of many months in and out of hospital - after 10 days in ICU and managing to not have surgery after doctors managed to stop the bleeding, I was diagnosed with LUPUS - they thought - NEURO LUPUS (or brain lupus). As I was moved to a normal hospital ward and not recovering as I should have been, the doctors were somewhat perplexed. I could not move, could not lift my head off the pillow. After another ten days I was allowed to go home but on heavy medications.

 

I spent one night at home and as I woke in the morning and tried to get up my neck just stiffened up and I experience the most terrible pain and funny head feelings and started to jerk and cry and did not know how to support my head. Just kept crying and crying and pleading for everyone to help me - to do something about my head - to support my head. I was rushed back into hospital - these attacks continued for the next few months. The neurologist kept saying it has to be neuro lupus but he was not even sure about giving a hundred per cent diagnosis. I had tested positive for all the other lupus tests and with that had ticked off all 11 of the lupus "yes's".

 

After many more months and many emergencies to the hospital emergency rooms, and re-admittances into week stays in the hospital my neurologist made a definite lupus diagnosis as my ANA was extremely high and each test showed it going higher and higher. More tests and more lupus positives. But still they decided to bring in a physiatrist - she would not hear of the lupus diagnosis and kept trying to ignore all the positive factors and diagnosis. By this stage 5 months had passed and my condition was worsening - intense and unbearable pain everywhere - intense headaches, skin rashes, mouth ulcers, intense sweating periods, fever and still positive lupus results.

 

By this stage I had been walking around but battling still to do everyday things and had not been able to return to work but now once again I was battling to walk and move and EVERYTHING seemed to be wrong. The doctors then decided to start me on high doses of steroids and plaquinil, etc.. A month later I was still not getting any better and needed to travel and because the fits/seizures which had started after the haemorrhage were coming more often and more frequently- they put me straight back into hospital and did 3 days pulse treatment.( Like a form of chemotherapy). I initially felt better but by the time I got back home on the first night - for the first time I felt like my life was over and I was not going to make it. For the first time I felt scared - My legs would not work - I had no energy - I sat on the bed and cried and cried. I remember saying to my husband after the past couple of difficult months - I don't think I am going to get better - for the first time I cannot feel positive about all of this - I don't want to do this to you - I will understand if you want to walk away from me and all of this (My whole life I had been such a fit, active, lively, bubbly and outgoing person) - he just held me tight and said he was there no matter what and he was there to stay.

 

I was so thankful that my best friend would be there to support me and try and help me through this terrible turn of events in my life. Both him and my daughter, Dana who had just finished University and had put things on hold to stay by my side and help look after me - I was so so grateful and thankful. My Dana was by my side 24/7 and was so amazing and I will never be able to thank her enough for her strength and maturity and how she helped me to cope and get through each day.

 

We then went to live with my elder daughter so we could make a new start - Dana was also there with us - my condition was rapidly worsening by the day - the attacks - fits/seizures getting worse until my mobility had all but gone. I could not walk - I found myself in a wheelchair. At this stage I was so ill that I could not even think or give thought to what was really happening or the circumstances. I deteriorated so badly that my husband had to feed me - carry me and put me on the toilet - everything - thank goodness for my wonderful family - my parents, my daughters and my husband - where I would be without their love and support I hate to think.

 

I was desperate to get an appointment at the Louise Coote Lupus Unit - I had heard they were so good and there would be doctors there and people who understood and would be able to sort this all out. But in the meantime, the GP said she could not alter my medication and by this stage I had been on such high doses of steroids for way too long and the side effects and damage from the medication also started to take its toll.

 

Not being able to wait any longer for an appointment my family booked me a private appointment with the London Lupus Clinic and I was fortunate to see Dr. Rachel Davies there who straight away advised my GP to start lowering my steroid dose - thank goodness for that as I don't know what would have happened if I had stayed on those doses for much longer.

 

Thankfully, I finally managed to get an appointment at The Louise Coote Lupus Unit at St. Thomas - how very, very grateful I was and am. On my first appointment they decided to admit me into hospital and do tests. Thankfully by this time my steroid dose had come done a couple of mgs and I was getting some mobility back. I stayed in hospital the week while tests were carried out and I thank all the doctors and staff for their excellent treatment and care.

 

They continued to lower the dose of the hydroxychloroquine but upped my plaquinil dose. My lupus tests were not as bad as they had previously been and it was suspected that a lot of my problems were more from the steroids than the lupus itself.

 

Since then - which was September, 08 - I have continued to be treated at the Louise Coote at St. Thomas and once again am in the hands of Dr. Rachel Davies who has been fantastic and I am very appreciative of all the support and treatment that I am receiving. Dr. D'Cruz and his team have all helped and seen me and I thank them all for all the wonderful work they are doing. Where would we all be without this wonderful opportunity and facility - people that understand and take the time to listen and appreciate the difficulties of this very complex disease.

 

So after being in a flare almost continually since the brain haemorrhage, I am finally starting to get back to some normality. I am so thankful that I am now out of the wheelchair and my mobility is improving with each day. I still suffer immense pain in my feet which still makes walking a lot of the time very difficult but I am "plodding" along. The depression sets in every now and again - mainly due to the huge amounts of weight I have put on, the cushingoid which is very bad, and pure frustration.

 

Even the loss of hair and very deteriorating eye sight has been heart wrenching. I still also have a lot of other lupus symptoms and also now have vasculitis, Raynauds and fibromyalgia. It is suspected that I more than likely have had Lupus for at least maybe ten years - so many things make sense now. All the things that have been unexplained and were always put down to depression and stress - loss of mobility in my legs, butterfly rash, an emergency life threatening peritonitis amongst others. This whole ordeal and disease has been totally a life change - from being the most active person always playing sport, taking part in running/cycling marathons and teaching and working out in the gym to not even being able to get around has been so, so difficult to handle and accept. I think acceptance is a big thing but easier said than done. Staying positive and keeping stress at bay is highly important and of course a good controlled diet - (which I always adhere to - but nothing is going to stop the added pounds when the dreaded steroids take their toll on our bodies).

 

Its been a long hard road and I still have some road still to travel but hopefully with the help of the Louise Coote Lupus Unit at St. Thomas and the disease being monitored and brought under control, I will soon get back some of my old life and start to feel "normal" once again.

 

My mission is now to support the fundraising for this disease that does not get the recognition that it deserves and raise as much awareness about it that I can.