I have my found myself categorising memories and events as pre-lupus. Does anybody else do this ?
On my Facebook it popped up that 3 years ago today I was on holiday in Norfolk with my family. As soon as I saw the memory I thought that's a pre-lupus memory.
That's a good idea for me. It hasn't occurred to me. I've had several very down in the dumps days ( well more than that really). It's not necessarily because of the illness though that doesn't help. I've had a couple of weeks of bad emotional stabs in the back.
I need to look at and collect the "before it all happened" memories. Might be bitter sweet, but I'll use some spoons for the sugar.
I know what you mean. I often do this. Especially when thinking about previous school summer holidays when I would book guests to stay with us in our spare room virtually back to back and cook for everyone and be out all day every day. Or, like you a holiday where you did lots. It can be hard but you do automatically think, pre Lupus. Before the fatigue and before having to learn to pace yourself. I do love those memories in Facebook though, it's always things you've forgotten or make you laugh. Are you back home now? X
Yeah I got back home Wednesday. Glad to be back. My mum had cleaned my room put a fresh sheet on my bed. It's lovely to be back.
I go look back and think of all the things I use to do. I didn't do a lot honestly I was very lazy before I had lupus. I've always been an indoor person. I think about when I use to constantly ride my bike . Sometimes I think about when I use to always play fight with my cousin 😂.
That's the past now , my life has altered with this illness but it hasn't taken over my life . I look forward to my new memories I make with having lupus . Especially if I do go abroad in October 🙂
If nothing lupus has made me want to do more now at a young age then I did before . It's made me want to go to other countries , lose weight and spend more time family . I've always been a family person but now even more
Bless you. You're wise for your age. This illness certainly makes you think about life in a different way. I saw your post about your holiday but didn't get chance to reply. I've been so busy with my children, as it's holidays that I haven't had much time for myself or for catching up properly here. When the children are at school I can spend hours here. Anyway, your plan for a holiday sounds great. Grab life and any opportunity like that with both hands. X
Thanks . I'm just worried they won't give me the time off . Speaking to my mum . I have come to realise I will take the week if they decline if we to go . As I won't get opportunities for holidays. I've printed out a passport form this week. Hoping to send it off by end of August .
Also if we do go on the 16th October my 18th birthday is on the 9th October it will be a nice after 18th birthday holiday !!!
Yea, i can't quite work out the right term. With my accident it was easy - it happened on a specific day and I had a timescale for recovery and eventually, I got back to nearly normal. But with this, the symptoms came on gradually, are still changing 2 years later, and I still feel like there "ought" to come a day when I am "better". So sometimes I think of it in terms of "before I got ill" but never in terms that make it sound like I have changed permanently. I'm in denial I guess! x
Some times in denial I think . In my head I think I can do so much more go to do it an instance pain 😑. Today my cousin was round and got the Nintendo Wii and was playing Wii fit . I did round round of the steps game and you knackered .
Hi all,Not sure what to think about the future the past or in the moment,this is all new to me, At the moment it's a kick in the gut. I probably will get pre lupus,has i'v got connective tissue disease to go with it.
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