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Feeling very alone

457 Views 6 Replies 6 Participants Last post by  tootsiewest
HI everyone-
I finally gave in and joined. I have been pretending that I am fine and trying to hide it from everyone. I am very independent, separated from my husband, raising 2 kids anyway, and a teacher. I've been holding my head above water...just. Formally diagnosed with lupus in March although I do not remember ever feeling 100%. Lately it's all been getting worse. I have been seeing a neurologist for 10 years for all kinds of strange muscle and nerve issues. Also I have been imbalanced for at least 9 years off and on. No one could really explain why...I had been diagnosed with Myasthenia Gravis, but now I'm negative and my doc had never seen that happen. I definitely have an underactive thyroid and have cramp vascillulation syndrome.

My main concern now is the constant headaches, blurred vision, and brain fog I have been having. I forget so much and words don't always come out right. Scary for me since I need to go back and teach third graders in a month.
Do any of you experience the neurological stuff and am I normal? Does this get bettter? What is an average day like for you guys?

Any insight would be's time for me to lean on others that understand.
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Dear Cindy

Welcome. I am sure this list will help you with the support you need. I joined again after a very long absence and it has propped me up during a down patch.

I was quite surprised the first time I got depressed and it was about 4 months after diagnosis, I think it took me a while to sink in. I was full of bravado "I will conquer this", which of course I couldn't - well I didn't have the energy to do anythng much. Now I find it is better for me to be in a frame of mind where I accept the lupus rather than fight it. This does not mean I give up, I just work with it rather than against it. Does this make sense? It did mean accepting some limitations in my life, but everyone is different and my limitations won't be yours.

We lupies often get other auto immune disorders. I have Sjogrens secondary to lupus, you seem to have MG (myasthenia gravis). I believe the treatment for MG is very effective, or so my partner was told as he was thought to have it at one stage.

Everyone's lupus seems to be different but some of us may have some of the neurological symptoms you describe. A lot of us on this list have got or have had bouts of depression and take medication for that which really can help. I am going through a patch of constant headaches, sensitivity to light, eyesight going unfocused and tripping up a lot. I also forget words, can't understand what is being said to me and am very tired, anxious and depressed. I have mild CNS involvement apparently. Currently I am waiting for rheumy to change medication as periodically it seems to be necessary to keep me on an even keel. Important thing is to keep your doctors informed - especially if new symptoms start.

For me lupus waxes and wanes. Some periods are tough and I am prone to depression. Others I cope with better and am more capable and mobile. It has not ruined my life, rather it has changed it. Managing change is the key I think and that takes time and support.

Hope you find loads of support, love and understading here. I did and do.

Love from Sara
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Dear Cindy

First of all welcome to the site. The guys here are really helpful and offer great support when you need it.

I was diagnosed last year and there are a still times I feel lonely and lost, but I come on here in search of answers and quite often find them. My hubby is quite understanding and helpful as he can be, but family sometimes don't quite get it!

I also get headaches and my eyes sometimes have difficulty focusing. As for the brain fog and odd things, for the most part I have got used to it as have my colleagues (I work in a veterinary practice). I picked up a box of tissues the other day and called it a box of chocolates. Also told a client that his bill was £100 more that it was... Poor bloke nearly had a coronary! There are times though I do get so frustrated with myself, I can be talking to someone and trying to explain something and the words just won't come out I've even stamped my foot in frustration! The worst thing is my husband will try to finish the sentence and it just makes it worse! It has helped reducing my hours and some of the work stress but not all the stress has gone.

I am not sure if I can offer any solutions other than the more stressed you get about it the worse it seems to be. As Sara said maybe acceptance of Lupus is the key, I don't think I have reached the acceptance stage yet I think I am still in denial. The only thing I can say is take each day at at time and deal with what that day is throwing at you. Make the most of the good days without over stretching yourself and don't be afraid to tell people. Some people will understand some will have to do some research... so send them to this site!

Look after yourself and don't be afraid to ask for help when you need it

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Hi Cindy,

I totally get your nerves about coming onto a site like this. I remember the first time I went to a Lupus UK meeting. I felt like I was admitting to something dreadful.... Hi my name is Kat and I Have a Lupus!
But the lovely thing about coming to this place is that you do realise you are not alone. I dont post much but I often just come here and read what others are saying that way I just get more of an idea of the scope of this disease and I am encouraged when I see how others are struggling with the same stuff I am or inspired by how they are getting through it.

I am not sure I have an average day. I have good days and days that are more of a struggle. The good days I really enjoy and the harder days I curse and just pray they dont happen when I need to do something important.

The other people on here are right to some extent you do have to accept that you do have a disease. If you had broken your leg you wouldn't be able to drive and you would be frustrated by it but you would get round it somehow. In the same way you have a broken immune system. Accept the limitations and try and find ways to get round them. If you are becoming forgetful list everything. This skill has taken me ages to learn but I find it helps reduce the frustration and means I get everything done. Also with a 3rd grade class you can get label everything. That might help with the word blindness. I work with teenagers so it is a little harder to get away with.
The hardest thing I find with working with kids is on the days when I am soooo tired and in pain I dont know what to do with myself. Those days it is so easy to snap at the smallest misbehaviour and for that I have just really clear class rules which I try to judge myself against to see if I am being fair. Twice I have gone back to kids and said sorry for over-reacting and explained that I was having a bad day and took it out on them and that I was sorry about that. The 1st time I was afraid that the kid would walk all over me afterwards but actually I got more respect and the 2nd time the same thing happened.

Enjoy the good days because they will be there and on the really tough ones get together with a friend and a bottle of wine or come a vent your frustrations on here.
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Hello Cindy and welcome :)

I'm sorry to hear you're feeling so alone. It can be a very lonely disease at times as we do tend to just keep smiling and pretending everything's OK. Firstly, not many people can understand the disease and secondly not many are actually interested.

I just wanted to reply quickly about the headaches, brain fog, forgetfullness etc.

I suffered hugely from these when I was first diagnosed (it had been gradualy getting worse over the years before). There are many things that could be causing it. First of all, tiredness doesn't help at all and many of us are so tired and have been for so long that we don't even know we are any more. I found that once I had medication that was helping with pain, I started sleeping and that is the very beginning of things changing. Secondly, cognitive problems are also a recognised and very real part of lupus.

You haven't mentioned what medication you are taking. Some meds take a while to start working and unfortunately we can't do much other than wait until they do. My biggest change and improvement came from medication and that finally enabled me to recup some of my mental ability. I still need to write everything down as I really do have a head like a sieve but it's a lot better and I can now concentrate even if I tend to do it when I feel up to it.

I don't envy you having to teach third graders. I used to teach (adults in business) but have been able to change my activity and now only translate except three easy hours of teaching. My main reason for not continuing to teach is actually the severe fatigue and the fact that I'm one of those who never really knows if or when I'm going to get a good day. The best thing about the change from medication was finally getting rid of those headaches. Daily headaches are truly unbearable and make everything else so much more difficult.

I truly hope things improve for you soon even if you may need a little more patience as some of those meds are very slow to get going and helping.

hugs :hug:

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Thanks so much for all the advice. Glad I joined since mentally I am already feeling better!:lol:

Hi Cindy

I used to come on this site alot to read all of the post just to know that I am not alone. I hate to know that there would be anyone having the same issues and pain as me. But I know that I can write if I have a question and feel like I have a friend that can add some insight or may have first hand experience. It's a nice feeling and it has been a little less depressing than being all alone.

I have SLE, fibro, kidney disease, severe migraines with epileptic seizures (no epilepsy) and have received a pain pump in 06. It is suspected that I "got" Lupus from stress so the docs say. My exhusband and I split and divorced in 02 and thats when I began to be sick. I can certainly Identify with feeling lonely and depressed

I have the brain fog and vision disturbances. My daughter is 10 and it breaks my heart that I can't take her to activities because I am off my rocker some days. For instance, we recently went to Myrtle Beach for her National Dance Competition. I woke up in the morning and thought I was fine. I had to put stage makeup on her. Apparentley I had asked her why we had a men's basketball tournament going on in our shower? It was a small stand up stall... Then I started yelling at the "players" because they were trying to throw balls at us. I went to put her makeup on and I tried putting black eyeliner on her lips, the dark brown eye shadow on her cheeks.

She finally went and got her Grandma. I slept the rest of the day until 6pm. I woke up and didn't remember a thing! These are happening more frequently and getting worse. My head is in more pain at times. Other times I feel ok.

I have a doctor that has put me on several medicines that have been helpful. Seeing a neurologist or a headache specialist in specific is important. The sleeping is a huge factor in my life equation. If I don't have enogh sleep I know I will have an episode.The problem is there is no, absolutely no warning as to when these happen. I have been fortunate enough to always have had a family member with me although my daughter has always been with me as well.

That is alot of my depression in it's self. I hate to have my daughter have memories of her mother having seizures and being sick taking 15 medicines a day and being in and out of the hospital. I dread that she will have migraines. What if I passed on something to her? I couldn't live with the thought!

I rambled and very sorry. Cindy,I hope that you can find some comfort in coming to this spot and writing your fears, tears thoughts and insight. It releases a big weight off your chest when you have no one to turn to. Just type away.
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