For people with or without Lupus…delete as appropriate!
When you were diagnosed had you heard of Lupus? I had but simply had no idea of what it really meant. Four years later I am now – ‘medically stable’- (at least on the day I saw my consultant!): as for many this means a new kind of normal and one where my life has changed dramatically. It has been a difficult journey, only eased by the support of wonderful family and friends, and I know I am lucky to have a brilliant GP and a Consultant who seems to have an effective and gentle touch. By nature I am nosey (a lively and inquiring mind!) and always seek to find out about things that intrigue me! Hence I joined Lupus UK and having received the regional newsletter decided to reach out to local people with Lupus.
Therefore, one afternoon I drove up the motorway to McArthur Glen outlet Village where I first met other Lupus sufferers. The welcome was friendly and it was brilliant to share our Lupus stories, to know that there were other people who really understood and who in spite of everything remained positive. I no longer felt alone and came away having promised I would make a Facebook page for the regional group, which I continue to manage now. I know some of you will have reservations about social media but I strongly feel that we need to use any means we can to reach out to those with Lupus and to spread the word in order to educate others.
Fast forward a year and at last year’s AGM for the regional group I became a committee member. During the last year I have missed one out of three meetings (because of the Lupus). I have been to several coffee and natter sessions and enjoyed each one. The year after diagnosis I held a coffee morning and sale of the crafts I make all to raise funds for Lupus UK. None of this has been a chore. I have read much literature about Lupus and do not hide it away when I explain to people why I have had to give up my job.
It was sad to hear recently that the North East Regional group has folded. It is understandable that when suffering from a chronic illness the last thing any of us want to do is something else that will eat into our very limited energy reserves. But here’s the thing, and I apologise for stating the obvious but the more of us who give a little time, then the less effort for any one person.
It may be that you could attend only one or two meetings; that’s fine. It may be that the ONE thing you do in a year is ask your local surgery to display a poster or some information leaflets; that’s fine. Then again you might decide that instead of giving away the chutney and marmalade you make each year, you sell it to friends to raise funds for Lupus UK. You may feel that you can donate a day of your time to staffing the information stand at your local hospital on a Lupus clinic day. You may have IT skills to help manage the Facebook page or contribute to the regional newsletter?
Your first step could be coming along to the AGM on Saturday 19th April at 2pm at Kegworth Village Hall, where you can meet the existing committee and other sufferers, have a chat, some tea or coffee and cake (we have some treats lined up) and learn a little about managing your stress and energy levels. We will have the information stand up and plenty of information for you to peruse or take away with you.
We promise not to press gang you but would love to meet as many of our members, your family and friends as possible!