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Fel
05-10-2013, 12:31 AM
Hi all , I am a 36 years old mom of 2 and have lupus ! it has been a long and difficult road the last year and the doctors have tried every treatment possible until recently I am now on a intravenous form of chemo instead of the methotrexate . the treatment seems to be working so far but recently my brain has had like brain fog and I have been seeing things and forgetting things and I saw on the forum that another lady was having similar experiences so I can totally relate to what she is referring too , as the same things have been happening to me that I imagined I had another illness that I did not even have , would forget where I was going while driving or get into the car and think what am I doing here? eventually it got worse and I started drinking and taking extra anti anxiety pills to help but just made it worse. eventually had total break down last week . My lupus specialist said that lupus can make you go psychotic and think things and see things that are not even there. I went to see psychiatrist and was in hospital for sleep therapy for 5 days and now on very strong drugs to try and help ! I am feeling better every day , but I cant be on these hectic meds forever as I am only 36 and thank goodness I a very supporting husband and family ! thanks for all your posts as I thought I was the only one feeling this way ! you have been a great help and I feel a huge relief that I am not the only one going through this.

it is strange to think that so many of us suffer different side effects . My specialist said to me that a MRI or CT scan could most likely not even detect this , but at least I know now that some of you out there are going through the same thing as me !
I know that I am taking a chance letting out all my true feelings and emotions on this site , but I trust that everyone on here has been through some form of depression or anxiety as I have and I know sometimes that's not what people want to hear.

take care and god bless
Fel

steve.b
05-10-2013, 08:13 AM
hi fel, and welcome. I have added a couple of threads that might be of interest to you.http://forum.wehavelupus.com/showthread.php?7214-You-Know-You-Have-Brain-Fog-When http://forum.wehavelupus.com/entry.php?624-the-REAL-cost-of-Lupus

Fel
05-10-2013, 08:45 AM
Thanks Steve , appreciate the links!

Jaynie
05-10-2013, 09:38 AM
Hi Fel.
I'm a plodder. I understand what you have been going through tho. I just manage to keep pulling it all together just enough to keep going. It's like I'm falling down the stairs but my heel keeps only just catching each one, so I'm upright, but still falling. Or "drowning, not waving"
Sorry, everything to me has a picture attached in my head. Analogies-r-us!
Lupus is a cruel disease...makes us all look a little crazy in some way or another, I just stay home so no-one can see!
You seem like a lovely person from where I'm standing! X keep talking lady!
Jx

Fel
05-18-2013, 08:31 AM
Hi there Jaynie

Believe me I know the feeling and I totally get where you are coming from. I am just as much a plodder and I also stay in doors as much as I can . It is aweful to think what we put ourselves through sometimes. And yes it definitely makes some of us go crazy but we just have to keep hanging on in there and take each day as it comes. I had a bad moment and I threw my blackberry against the wall as I just got so frustrated . I don't even know where it came from the anger and the rage. I am usually a very talkative and soft person and love to make new friends and chat as much as possible , but lately I have been in this shell. You seem get and seem to definitely seem to relate to a lot of what I am going through and I am very thankful. chat soon and take care .
Fel

Jaynie
05-21-2013, 11:13 AM
Hi again Fel,
I'm all over the place at the moment. My lupus is so-so, life is ticking along, pretty much I'm normal, but I just feel tired all the time, along with the fluey feelings and pain, and emotional rollercoaster.
It was so much simpler before I started really sorting stuff with my counsellor, but now everything seems kind of jagged and real. My patience is dissolving and I'm less organised than before...this gets better right?!
(I'm actually too exhausted to keep thinking right now LOL...have to stop!)
Jx