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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so all I could do was rely on my rheumatologist to give me information and look at library books, which were often out of date.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’.
One of the ‘skills’ we seem to develop when having lupus is how to lie. That may seem a strange thing to say, but we spend quite a lot of time playing down our symptoms and pretending we’re fine.
We also often develop what I like to call ‘the skill of omission’: things we don’t admit to friends and family, again for fear of upsetting them. We don’t necessarily do this with everyone, there’s often one person we feel we can tell the truth, usually a partner or the person closest to us.
In a new global survey of more than 3,500 people with lupus released by the World Lupus Federation (WLF) for World Lupus Day,, nearly 7 in 10 participants responded that lupus hampers their mobility. The majority of survey respondents also reported they are limited from doing daily activities because of lupus, including limitations going up and down stairs (67%) and doing chores (69%) such as vacuuming or yard work.
In times of crisis some people will still take the opportunity to con people which is the lowest of the low. People are desperately searching for information and some of the information that they would normally question or filter out might not currently happen as we're uncertain about facts at the moment.
Are you totally fed up of all the fear and bad news regarding the Covid-19 outbreak? Believe it or not there is positive news too. So just for a change I thought I’d focus on that and round it all up to remind us this won’t last forever and there are things to be thankful for. It has forced us to slow down and remember what is important, and also reminded us of the many things (such as freedom of movement) that we have previously taken for granted, it’s not until things break down that we start appreciating them – or even remembering that they exist at all.
There are going to be people such as lupus patients who are going to self isolate, we don’t really have much choice as for us it might be a matter of life or death.
For some people this can be stressful and difficult. It’s already recognised that social isolation is one of our biggest killers so we should take as many steps as we can to make this as tolerable as possible.
