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When a new patient asks for advice one of the first things I say is treat your body well, it needs your help. High up in the list of things I personally think is very important for your body (lupus or not) is good nutrition.
As we say in our section on diet there’s no particular diet that is recommended for lupus but there are foods that can help your lupus or on the opposite side of the coin make you sick.
When I met a lupus patient I’d ask what other autoimmune conditions they had. They’d always ask how I knew they had more than lone condition and I used to say it was like lupus having a party and invited all its friends to come along. In other words its sadly not unusual for us to have two or more autoimmune conditions, know as overlap syndrome.
Many, many years ago I was diagnosed by Professor D’Cruz with carpal tunnel syndrome, something that’s quite common amongst lupus patients. It causes tingling, numbness and pain in the hands, fingers and wrists because of pressure being put on the nervous system. Lupus can cause joint pain (arthralgia) and inflammation in and around the joints, resulting in problems like arthritis, tendonitis and as mentioned carpal tunnel syndrome.
I’ve had lupus for about 30 years and this is personally what I wish people knew.
It’s incurable and chronic. Just because you see us out and about doesn’t mean we’re ‘better’ or ‘cured’. We have some days that the pain level is tolerable and some days where it isn’t so we take have to take full advantage of the days we can function at all.
I was misdiagnosed for over 4 years before I was told I had lupus. My reaction? “Thank God, what’s lupus?” That may seem weird but I was continually being told by GP’s there was nothing wrong with me and that it was all in my head.
The reason I decided to have a go at writing this was because over the years I have heard so many patients talking about the difficulty in claiming benefits and the fact that the people dealing with their claims don’t understand anything about lupus. In a way I sympathise with the person that has to deal with the claim as lupus is far more complex an illness to have to assess than some others, it’s definitely not cut and dried so they can just tick off boxes. However, not understanding lupus does not justify them refusing benefits.
I always tell the story of how, before diagnosis of lupus, I had a severe pain in my jaw and my dentist said that I needed root canal. A couple of weeks after the procedure I still had the exact same pain. I was referred to a dentist in Harley Street who also couldn’t work out what was wrong, so I’d spent a lot of money on unnecessary dental work (not to mention the pain). This made me a bit wary of dentists.
I’ve often posted on social media telling people that if they see us out and about, even if we outwardly look very well, we’re not ‘cured’. So I thought I’d address the issue of the fact we can sometimes have good days, these are defined differently for everyone as we all have varying degrees of pain that we consider ‘normal’ for us.
Getting lupus in my late 30’s came as a complete shock. I was normally very healthy, nothing more serious than a cold, then I was suddenly told I had a chronic illness and I would never get better. Whilst the fact I had finally got a diagnosis (after 4 years) was a relief, it was still a complete bolt out of the blue to find out I had lupus something I’d previously never even heard of.
At the time there was no internet so all I could do was rely on my rheumatologist to give me information and look at library books, which were often out of date. With the best will in the world rheumatologists can give you the medical facts, but unless they have lupus themselves they won’t be able to tell you how you might feel about it.
I sort of knew that this could be a serious issue, but it was also something that could possibly be managed and I could live with it, but there were some things that I didn’t expect.
For over a year a lot of us have dreamt of meeting up with friends and being social again but now that time is starting to arrive are we all ready to mix with others again? Whilst the idea of a return to a so-called ‘normal’ is exciting for some people, it’s frightening for others, even those of us that would usually be considered ‘confident’.
Spring is the season of renewal and regeneration, the weather is getting warmer and flowers are starting to bloom. It makes us want to fling the windows open and let the fresh air in again, hopefully we’ll also all start to emerge from our houses again. So Spring is also a good time to think about doing that with your mind and body.
For some people, like me, pets are quite simply a lifeline, it’s no wonder that an estimated 41% of UK households have pets.
Speak to any pet owner and they’ll reel off an endless list of ways their pets have changed their lives. They can be our best friend and, for a patient with chronic illness, a furry friend can provide much more than companionship and cuddles. Studies show that animals can help with everything from lowering stress and blood pressure, to battling depression and helping with chronic pain.
When the bells tolled to mark the start of 2020, I never imagined it was going to be a year like this. As I was turning forty this year, 2020 was going to be a good year, filled with loads of plans but that all came to a grinding halt in mid-March. Little did any of us expect that a pandemic would hit and that the whole world, as we knew it, would literally come to a stop.
I previously wrote a blog ‘the outside world has suddenly become a scary place’, talking about despite the fact I’m normally a confident person, because of Covid19 I felt frightened to go outside my front door.
I now find myself looking at the other side of the coin and sometimes feel nervous inside my house, which is normally my ‘safe haven’
Even though I had a lot to be anxious about during the lockdown (I have lupus, I recently had a kidney transplant, I’m from a BAME background and work in the NHS) being advised to shield wasn’t the worst thing I’ve had to do and there was something soothing knowing everyone was in the same boat of trying ‘keep calm and carry on’.
