LUPUS RELATED NEWS & UPDATES
Latest news from the Lupus Trust
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.
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.
When asked to describe themselves people often say they are someone’s mother/father/sister/brother/wife/husband, maybe what they do for a living, where they live and so on, but how would you describe yourself? In amongst the words would lupus or pain or exhausted etc be part of the description? Think about the quiz shows where the teams introduce themselves, “My name is John, I’m 51 and a Managing Director from Essex”, not once do they say “and I have lupus (or any other chronic illness)”.
As New Year approaches people are thinking of making resolutions. Personally I never bother, if I want to change something I do it no matter what time of year it is, especially if I think it will benefit my health. Also you make a resolution and don’t follow it through you might feel you’ve ‘failed’ which isn’t a good thing. Studies have shown that less than 25% of people actually stay committed to their resolutions after just 30 days, and only 8% accomplish them.
However, if you’re absolutely committed to New Year resolutions you should consider in advance which you might be able to achieve and avoid those which you know will be doomed to failure from the start.
People often say they’re exhausted when in reality they’re just tired, caused most likely by something such as working or playing too hard, or being stressed. People lead very busy lives these days, so tiredness is not unusual. What people don’t understand is that tiredness isn’t the same for everyone, it’s very different to the fatigue caused by chronic conditions such as lupus.
When you have a chronic illness and particularity when you’re in the midst of a very bad episode or flare, it’s hard to feel grateful for anything. We get overwhelmed by everything we have to cope with and forget to express gratitude, yet if you think about it we all have something to be grateful for.
Naps are not only beneficial because they make us feel less sleepy and more alert, but because they improve our cognitive functioning, reaction times, short-term memory and even our mood. Research also found that found that motor learning, which is where brain pathways change in response to learning a new skill, was significantly greater following a brief afternoon nap for regular nappers when compared to non-nappers.
If you have lupus you know all about napping, infact we’re professionals. So could we improve the quality of our napping? Here’s a few tips to get the best from your nap.
We’re just not used to hot weather in the UK so when we get a sudden heatwave our body struggles to cope with it, especially sleeping. In countries that have more heat than we do they have air conditioning but it would be used so rarely here that the vast majority of us don’t have it. So what can we do to help us sleep in the hot weather?
When you get lupus the reality is that you will almost certainly have to make lifestyle changes and one of those may be to your work life. Whether you live to work or work to live a job is an integral part of most people’s life. When lupus strikes it can often prevent people from continuing to work at all.
