I haven't written on here in sooo long. Just a little update. I still haven't had one of my flare ups which is great! But recently after stopping the steroids have had pins and needles and double vision problems which sent me to A+E. It lasted for about a week or so, then gradually improved. I'd been getting visual disturbances over the months where my vision was like a tv screen being moved side to side infront of me. Sometimes it only lasted for 5 mins, sometimes more than an hour with nausea and vomiting :/ I'd said that the next time it happened again I'd go to the docs, well the next time was when I woke up with complete double vision. Was very scary. I've seen an eye doctor anyway (much easier than writing the proper word lol) but by the time I went again it had gone so I got discharged. He did say that the problem was behind my eye (which is what I guessed anyway) but I'm still a little bit mixed up about it from what I've read online. Could it be the nerves being inflamed that leads to the muscle being weakened? (I also have Vasculitis) I also read about CNS Lupus, has anybody had these kind of problems when diagnosed with this? I went for my MRI Tuesday night anyway so will hopefully get the results back in about a week. It all happened about 3/4 weeks ago though so am wondering if anything will show. Although still getting the pins and needles.
The other thing I was going to post.. Apart frm that, things are starting to look up! I eventually got round to quitting my job, I'd suffered for years trying to make them happy so was a big relief when I finally came out with it.. And have now moved in with my boyfriend. I've been waiting to move out for so long but the last time I did it, I wasn't ill! Obviously it's a bit harder, more things to do physically and he still forgets I'm not able to do things sometimes which does get me down but it's great to have some independence back. Unfortunately though, if your partner works more than 24 hours, you're not eligible for benefits so my ESA has stopped. When I finally figured this out, was devastated because We didn't think we would be able to live together on just his wages. We agreed to try and struggle through but I'm not lying when I say I've found something amazing to turn that all around.
Has anyone heard of Scentsy? I took a big leap, as was desperate really and have become an Independent Scentsy Consultant. I am totally in love with the products. They have a range of beautiful handmade warmers and unique waxes which are indeed wickless candles. You plug in, put the wax in the top and enjoy your scents. There's no soot or smoke and most importantly NO fire hazard. The wax itself is made from food grade paraffin wax instead of being vegetable based so it has a much more vibrant scent throw and longer lasting time than usual candles.. And will not heat higher to just above body temperature so safe around children and pets. It's all done with a heating element (no more than 13 watts) and LED's inside which give off a lovely glow. Some people even use them for night lights. They are proving very popular, I'd love to tell you more about them if you're interested. I wouldn't be telling you if I wasn't in love with them myself. (They also do scented cuddly toys for kids and a personal care range.)
Why I'm so happy though is I never thought I'd find something that could work around me. There's absolutely no pressure from anything, it fits around my bad days and can all be done online if I want. It really is a great opportunity for us Lupies so please ask me about it if you want to give it ago. I will be your sponsor and will support you every step of the way. If you'd like to see what it's all about visit my Facebook page I'm really trying to get myself out there and trying to turn my life around. Lupus has had a hold of my for so long, it's nice to be doing something I want and enjoy at last!! If you know anyone that loves scents/fragrances please send them my way. Great Mother's Day gifts aswell! Haha, sorry, had to get that last bit in there. I just want to share what a great thing this is. facebook.com/gettingwickless