By Rebecca Drew
THIS FITNESS fan has learnt to live with her lupus instead of fight against it after a suspected INSECT BITE which caused her legs to blister and then ulcerate resulted in a three-week-stay in hospital and a further FIVE-MONTHS to heal – teaching her that the auto-immune condition is unpredictable.
When wellbeing facilitator, Aminah Jagne (28) from Pontypridd, Wales, UK, was in her first year of university she started to notice a throbbing pain in her wrists, hands and feet and would feel stiff in the mornings as if she had done a heavy workout the day before.
It wasn’t until one day when Aminah stood to get off a bus but realised she couldn’t walk due to being in so much pain that she knew something was seriously wrong. This led to her lupus diagnosis in January 2011, shortly after which, Aminah was forced to leave university and move back in with her parents as she struggled to manage her studies whilst working part-time.
After being diagnosed with the auto-immune condition, Aminah decided to get into fitness thinking that by keeping fit she would be able to control the effect it had on her life. Over the years, she’s tried cardio DVDs, weight lifting, powerlifting, Olympic lifting and bodybuilding in order to try to become as strong as she can, all of which Aminah has had to stop at one point when her lupus has flared but she has now learnt to adapt her routine to how her body feels and says that fitness has given her confidence and helped her mentally.
In March 2018, Aminah decided she was ready for another challenge and started training for a bodybuilding competition but her world was turned upside down when she received what she thought was just an insect bite six days before she was due to go scuba diving in Egypt. A few days after being bitten, Aminah suffered a severe reaction which caused her legs to blister. Concerned, she went to her GP before jetting off but was told the reaction wasn’t bad enough and was prescribed antibiotics.
Whilst staying on a boat on holiday, Aminah’s blisters started creeping up her legs, turning into ulcers and she was unable to access medical help. Aminah was in excruciating pain but tried to put on a brave face, having taken all her strong painkillers and taking paracetamol and ibuprofen together.
After landing at Heathrow a week later, Aminah went to hospital at home in Wales and was admitted immediately. She was in hospital for just under three-weeks and was in so much pain, her legs felt like they were on fire every time she stood up and she had to be wheeled to the toilet as she couldn’t walk due to the pain.
Because of her lupus, Aminah’s legs were in bandages for five-months after being discharged from hospital and she had her dressings changed every other day until they healed. Now doctors are unsure whether she was even bitten, or the blisters and ulcers were caused by her lupus.
“Towards the end of my first year in university, I started to notice throbbing pain in my wrists, hands and feet. I’d be stiff and achy in the mornings as if I’d been doing strenuous exercise,” said Aminah.
“One day, my foot was aching, but I had promised a friend I’d go shopping with her to help her choose a dress for an event, so I pushed through it and carried on.
“On the way home, I stood up to get off the bus and realised that the pain had reached such a level that I couldn’t walk. My friend helped me off the bus and we then had to call other housemates to carry me home. It was then I realised that something was really wrong.
“I had to withdraw from university and go and stay with my parents who were living in South Africa at the time. I couldn’t handle all the demands of my life with studying and working part-time.
“Really it was a relief to finally have an answer and to be able to stop fighting through it every day and pretending I could keep up with everything.
“I was diagnosed with lupus in 2011 and started my fitness journey then, believing that if I could be as fit and as healthy as possible it would limit the impact that it had on my life.
“I don’t know if it [fitness] has helped limit the physical impact of lupus, but it’s definitely helped with the mental impact. Rather than see myself as fragile I view myself as strong and I know that my body is capable of lots of amazing things – even with lupus, which is amazing
“Fitness has given me confidence. When I’m flaring and have had to take a day off work or am feeling weak and incapable, I can tell myself, ‘Yes, but you’re also capable of picking up 100KG’.”
Lupus is a long-term auto-immune condition for which there is no cure but symptoms can improve if treatment starts early. It causes inflammation to the joints, skin and organs and can flare up and settle down at any time.
Aminah went on to talk about her insect bite ordeal and how it’s changed her perspective on life and how to manage her condition.
“My legs started to blister a week after getting bitten, and then ulcerate a week after that. I had no idea what was going on and have never been so scared,” she said.
“I had flown to Egypt for a holiday and was staying on a boat when the blisters were at their worst. I couldn’t access a doctor and after the oral antibiotics I was given by the GP back home stopped working, things went downhill fast.
“I ran out of stronger painkillers and was taking paracetamol and ibuprofen together after being advised by a former nurse who was on board. I was in so much pain but couldn’t get this across to anyone and tried to put a brave face on it.
“I travelled straight from Heathrow to my local hospital in Wales. I was so relieved when they said they would admit me but didn’t realise things would get worse.
“The blisters turned to ulcers and the pain reached a point where I had to be wheeled to the toilet. Every time I stood up, my legs felt like they were on fire and it would take some time for the burning to stop after I lay back down. I’ve never been religious, but I found myself praying during that hospital stay.
“Because of my lupus, the healing was slow. I was seeing nurses every other day to have my wounds cleaned and bandages changed. Each time was excruciating and no-one was able to give me an idea of how long it would take for them to heal. Sometimes the wounds were worse when I went to see the nurses and in the end, it took five months.
“The experience made me realise that lupus is unpredictable. I may be absolutely fine for months and then it may cause a massive reaction in a way that I’ve never seen before. When I was in hospital, I met other patients with lupus who were affected in completely different ways to me.
“I’ve accepted that I have to live with lupus, rather than fight against it. I’ve changed career, partly with the hope of getting to a point where I can work for myself and have downtime when I need it in future.”
Aminah suffers with a lot of joint pain and fatigue and takes medication every day and takes medical steroids when her condition flares. It’s important that she gets plenty of sleep because if she doesn’t her joints start to ache and she can find it difficult to swallow.
Now Aminah trains at home for two weeks and then takes a week off to take care of her body. Before, this inconsistency would upset her but since her hospital stay, Aminah has learnt to be patient with herself and live with her condition instead of trying to power through regardless of how she’s feeling in herself.
“The most difficult thing is the changing nature of my lupus. I’ll reach a point where I feel like I know how it affects me and have figured out the best fitness routine to work with it and then it’ll catch me off guard and I’ll have to start again. It’s been like that for years and I suspect it will be like that for the rest of my life,” said Aminah.
“I have always been the kind of person who packs my life full of activities and I’m always working to improve myself. It was really difficult to accept that I couldn’t always be the best at something and that I had to slow down and be kind to myself. It took time and therapy for me to accept that I can be vulnerable at times.
“I suppose I’d like to get across that lupus shouldn’t be underestimated. Just because your symptoms are quiet now, doesn’t mean they always will be.
“Be kind to yourself and above all things, listen when your body is telling you to rest. It doesn’t make you weak or incapable, but instead, I think it makes you brave for being able to say, ‘No, I can’t do that right now’.”
For more information see www.instagram.com/lupuschamp