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Double vision? Also job opportunity!

Double vision? Also job opportunity!

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.

Lisa x

2 Replies

Hi teecayc. It's great to hear that you have been free of flare ups lately, & that you have moved in with your boyfriend. Maybe you could both go along to your local lupus UK meetings, lots of partners come along to ours. That way he will be able to understand better how lupus effects you.

I have had numbness & tingling, as well as vertigo which made me feel very sick, & visual disturbances which was as if things were moving & breaking up at the edges of my vision. All very horrible & worrying. Like you I thought it might be CNS lupus, but nothing showed on the scans I had. This was a year ago, & now the numbness can still come & go, & I feel dizzy sometimes. But otherwise it has settled down.

I know this probably isn't much help to you, but try not to worry. Lupus does lots of weird things even when we think it's quiet. I hope your scans come back OK, & that these symptoms start to settle down for you too.

It's great to hear about your enterprise, all the best with it. I will check out the website you've posted.

Best wishes. X


Hi :)

That's a great idea but he understood so much before we moved in together, I really don't see how he could have just forgotten! He was always helping me, knew when I'd done too much etc. If it really does get any worse maybe that's the road to go down though.

My MRI results came back all clear too.. But not surprising when I had it done a month after the symptoms. Really should have been done the night I was at hospital but the CT scan was stretching it enough for them!

And thank you, hopefully that will be the last of it, at least for now. Who knows, maybe it was just playing up because of the lack of steroids. (Fingers crossed)



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