Our Stories

Story 1

My journey started way before I was diagnosed 2 years ago. 8 years ago my twin boys started school and I felt a sigh of relief that I would at last have some time to do my artwork again and have some space and time for myself. Having twins was such an intense experience! From the 38 week pregnancy, a long natural delivery and then years of mayhem and no sleep, it’s no wonder that I was totally exhausted all the time and basically running on adrenalin to survive. I would often feel exhausted, flu-like with a sore throat, headaches, raised glands, and brain fog. Once I was hospitalised with uncontrolled bleeding and I needed a blood transfusion. So when the boys started school at the age of 5, I thought I might start to recover, unfortunately I got worse!

At first I started to notice that I was getting really bad brain fog with muscle aches and pains, and tingling uncomfortable wrist joints and I was exhausted. I kept expecting to get better, but every recovery was very short-lived. I was learning tai chi at this time and loved it, it made me feel great in my spirit, but my muscles and joints really grumbled too.

The fatigue got worse and I eventually went to my GP. A year of tests showed up nothing, (except the ESR was elevated once), and I was eventually given a diagnosis of ME. It was something that people didn’t ‘get’, especially my husband. It was really difficult as I’d be laying in bed all day, (multi-tasking my journeys from the bed to the toilet with making a sandwich or a cuppa to bring back to bed, and picking up kids from school by car) and when he came home I would drag myself out of bed, put on a cheery smile, make him dinner, and pretend that I was OK, just because he couldn’t deal with me being ill. This was so hard that I really got depressed and ended up needing anti-depressants.

The thing with ME is that it didn’t have a treatment as such, I just had to rest and hope for the best as the GP had nothing helpful to give me. I started looking for help in alternative therapies, which helped to a certain extent; I started doing a bit more exercise, eating better (saw a nutritional therapist) learned about mindfulness meditation and developed a range of relaxation tools that helped me. However this didn’t prevent me from getting more and more painful joints, mostly in my wrists at first. And this eventually prompted me to go back to my GP -I was really worried that I was developing Rhuematoid Arthritis like my mum.

I was lucky that he referred me straight to rheumatology and I got the call while I was on holiday in Scotland. It was on this holiday that I started noticing that I felt much more flu-like after being in the sun and I got a burning red face and rash too, followed by increased joint pain. This is a pattern that has continued. On my first appointment with the rheumatologist he told me it wasn’t RA so I was so happy! He gave me a leaflet about Lupus and I chucked it away!! I thought “It can’t be that, I’ve never heard of it!!”. It was 2 years ago on my second appointment that he said the blood tests had shown a raised ESR and the ANA was positive for Lupus. I was thunder-struck. He gave me another leaflet about Lupus and told me to stay out of the sun. It was April and the first real sunny day of the year, I’d been in the park for an hour before the appointment and arrived with a red face and that familiar flu-like feeling…and it all fell into place.

I felt so many emotions and they were all mixed up, like not knowing which way was up! I was frightened that I would have organ failure, my faith in life was dashed to pieces (my mindset had been transformed in an instant from someone who was recovering from ME to a newly diagnosed Lupus patient), and I couldn’t stop crying all the time. It made me totally reassess what I could or couldn’t manage in my life. I had to give up volunteering work when i realised I couldn’t cope with it anymore, and redefine my relationships. I even had to write to a friend who was very needy -and couldn’t take a hint- and tell her that I couldn’t be her friend anymore (difficult but worthwhile and a weight lifted off me). But the good thing about the diagnosis was that my husband completely changed his attitude and became really really supportive, and apologised for not understanding me before. Now he’s really protective and helps me to not slip into old patterns of saying I’ll do things that I’m not well enough to see through. He supports me in doing the things I love to do and my life has improved a lot.

The worst flare was last Spring, I was looking after my dad a lot (he’s ill with Parkinsons and dementia) and it was really stressful. On top of all the usual symptoms, all my joints got really bad and my hip got so bad (the pain was so excruciating) that I needed crutches to walk. That was the last time I had bad arthritis, now I tend to get more in the way of arthralgia.

It’s a real pain in the butt to not be able to go out in the sunshine, and to be constantly worrying about exposure to UV (the other day, I spent an hour in the garden, it was dull and drizzly so I didn’t think to reapply my sun block, and when I came in my face was burning red!). At the moment my tendons and muscles in my arms feel like they are on fire (like fire ants in my arms!) and the brain fog can be so bad that I often can’t finish a sentence (I forget the words)!

Even though it’s been a really difficult year, with lots of pain in my arms and a bad reaction to steroids (so bad that it almost led to me taking my own life) I feel that I still have a good quality of life. I’ve started taking Turmeric and VIT D, gone gluten free, mostly sugar free too which seems to have helped -I now have more energy and less pain. I do the things I love, like my artwork and gardening, and I pace myself well. Lupus is a difficult thing to live with, but now that I understand it better I’m able to live a good life, within my limits.


Story 2

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Story 5