Living with Lupus is crap, I try very hard not to let it interfere with things too much, but ultimately it does. There are many things I can no longer do, and I've had to learn not to get upset that I can't do those things. Ignoring the fact that housework needs to be done is one thing, but other stuff is an entirely different matter, frustrating and sometimes upsetting.
Lupus is pretty much an unseen illness, rarely do we actually look ill unless we are really bad. We live with pain and fatigue everyday and it doesn't show, most of the time we don't let it show. But I'm sick to death of that 'here we go again, you look fine to me' look that people can't hide when I say I'm too tired or not up to doing something. It sucks people, and it's hurtful whether intentional or not.
I came across a petition yesterday to change the way Lupus sufferers are assessed for DLA and other benefits. I downloaded the form last year to put in a claim, but having filled it out I kind of gave up. I don't fit into their box. I don't need a carer 24/7 and I can walk about, so in their eyes I'm fit to work. Yes I'm fit to work sometimes, but the unpredictable nature of Lupus means I have days when I can't, and how many employers will put up with random days off sick. Even my last employer (NHS) had me up before occupational health on two occasions because I had 3 days off in 3 months. When I got there they told me I shouldn't really be there as I'd had 11 days off in a the year and the national average was 12, considering I have a chronic condition she though I was doing very well. I only look days off sick when I really needed to, I trundled into work when I felt like crap all the time when I should have stayed at home. I'm not alone in this, there are many people out there who do the same regardless of their conditions. A little more compassion is needed. I hated that I felt guilty for being ill, I didn't ask to be ill but I am and with no cure there's not a lot I can do about it. I refuse to apologise anymore or to be made to feel guilty for it.
Oops I seem to have digressed somewhat, getting back to the point of this rant and outpouring please spare a moment and go here to sign this petition, believe me it really would make so much difference to us if we could change this. I freelance from home but I really don't earn much money at all, Colin bless his heart pretty much keeps me without any complaints, but things are hard and we are finding it difficult like so many others to stay on top of the bills and morgage. If I could get some help with DLA (and I'm only talking about help, not a full blown benefit) I would have one less thing to worry about and not be such a burden on Colin.
Could I ask if you would please promote this petition on your blogs, we really need to promote awareness for Lupus sufferers. Some people have never even heard of it, and most people do not realise how it effects us, we have no cure as yet, but with continuing research and a few prayers maybe we will at some point in the future, hopefully not too far in the future. Research is another point I will come to at some point, we need to promote awareness for this illness so we can get more funding. Cancer, heart and children's charities although deserving are not the only ones that need donations.
If you are unsure of what Lupus is then take a look at Tiffany's blog post entitled 'Revealing Lupus Lies', I think it's very informative and a pretty good insight into the illness.
Outpouring and rant over now, thanks for your patience.
Onto crafty stuff now. This is my card for The Polka Doodles challenge the Friday before last (bit late I know, sorry) The challenge was to make an easel card. Now I know they are very popular cards to make, but am I the only one who is just a little bit sick of them? Not that I want to offend anyone, we all after all have our likes and dislikes. I made mine with acetate, just to be a little different and I used the Polka Doodles Sundae of seasons CD
The leaf design on the card above is made using one of Kuretake's corner punches.
The same card in two colour ways
The border punched designs on the two cards above are made with Kuretake's corner punches. They do make lovely borders.