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Discussion Starter · #1 ·
I was up again at 4:00 this morning. I usually wake up every morning about that time, sometimes from night sweats, sometimes from I-don't-know-what. But as I was laying there, feeling the pain that's returned since I stopped the MTX, I became very afraid. It shocked me how quickly the symptoms all came back and how it has progressed over the 16 months I've been on medication. I'm afraid what will happen if I ever have to stop the meds because of surgery or bad blood work. I'm afraid that since my nervous system and brain are involved, I'm going to lose my vision or the hearing in my other ear (I'm already deaf in one ear, not sure if it's from lupus or not) or have a stroke. I'm afraid that I'm going to eventually lose the use of my ever-weakening limbs. I'm afraid that this is going to shorten my life span. I'm afraid of so many things and the uncertainty of my life now. I guess I'm just now fully accepting that I'm sick. There's always been a part of me that's in denial and the fact that I'm no longer "undifferentiated" and now labeled with lupus and Sjogren's isn't really the catalyst for this new fear. It's how quickly I went bad when I stopped the MTX. Since the disease is progressing, what do I do when I've run out of medical options?

Some of these questions can be answered by my RD, but only you, who are in the same situation in varying degrees, truly know what I'm feeling and perhaps can advise me. I'm not prone to depression (thankfully) but right now I'm scared about the future. How do you handle your bad days?
 

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Hello Jesse,

I think we have all felt that way at some stage to a greater or lesser extent depending on who we are and the state of our disease.
There are especially times when the fact of being ill suddenly hits you like that.

To be honest I don't have an answer. I suppose it is different for everyone. My way is a combination of good old denial and taking one day at a time. My usual attitude is that I could be afraid every time I get in the car and go on a busy auto-route. I used to ride horses for a living and my ex husband hated it for the "risk" factor but I have to admit that although I was careful I didn't think about that. If I had I would never have done half of what I did nor enjoyed myself half as much. I suppose that lastly I accept that this disease is unpredictable so I don't try and predict it.

I'm sorry if all that sounds terribly simplistic but that's the way I see it. I have a very close friend who is very seriously ill and who has almost died three times this last year. We sometimes talk about life, it's meaning, whether we'll be here or not but more often we don't. We just take it day by day. If that friend hadn't taken it day by day she wouldn't have survived the stress of it all and wouldn't have been able to enjoy those good days she has had.

As I say, I hope it doesn't sound too off hand or simplistic :)
Katharine
 

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I just take one day at a time. I try to stay calm to keep my teenage children from being scared of losing me when inside I have "fear". I only do what I can each day. My schedule changed drastically. I had to leave my job 4 years ago, I got divorced, we moved, my mom passed away, etc etc... I dont have family left but a sister who lives 4 hours away and has her own young family, and my step father. I cant have anything happen to me so I make sure I take care of myself the best I can. I dont care if the soccer parents think I dont volunteer enough or the man Im seeing gets upset I dont want to see him a few days because of the bone tired exhaustin I feel, Ive given up alot. The sofa is my best friend!! Fear? Yes we all have fear....Lupus is one disease where the future is not known. I would talk to your doctor about possibly an anti anxiety medicine to take when FEAR controls your life and thoughts. Best of Luck!! Hugs...
 

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Hi Jesse,

I deal with the fear about Lupus the same way I do with other things. Look at the economy. I can't shore up all these banks, but I can take precautions with my own money. Lupus is the same way. On a daily basis eat well, get rest, stay up on medications, exercise, and try to keep stress to a minimum. Try to make the most of each day, that day will never come again.

In the event another symptom comes into play then you will deal with it. You are learning so much here that you will be better prepared and less likely to panic. We will all be here for you with our experiences and support.

Take care,
Lazylegs
 

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Discussion Starter · #5 ·
Thank you, Katherine, Michelle Ann and Lazylegs. Denial was serving me well and it sounds like maybe I need to bury my head in the sand again. Of course, I'll still do everything I should to take care of myself, but I guess I just have to force myself to stop thinking so much. Right now I watch TV when I wake up in the early morning hours, just to stop the thoughts racing in my head, but for some reason it didn't work this morning. Yeah, I guess there's something to be said for denial and not looking too far ahead. And worrying isn't going to make me any better, and might make things worse. If I do everything I can to help myself, and stay busy, (that helps a lot), maybe I can avoid another bad day like today.

Thanks for listening. My dear husband is good about this whole mess, but he doesn't truly understand what I'm dealing with, hard as he may try. And how often can I dump on him? It's a great comfort to have others to "talk" to about this. I appreciate it, big time.
 

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Hi there Jesse

I took a while to reply to your post because I didnt really know how to answer. It certainly struck a chord with me.

I started to think about how I 'deal' with the uncertainty and worry of this disease and I realised that I dont actually 'deal' with it. I have learned to live with it because I have no choice.

Some days I dont have any fears or worries - maybe they are days when I am either too busy or else I am sleeping! It just doesnt come into my head much on these days. However there are days when it seems all consuming sometimes - the worry about where all this is going, is it 'going' somewhere, is this as good as it gets, is there worse along the line, etc etc

I guess we all have those days - otherwise we wouldnt be human. However if the bad days began to outnumber the good days or were seriously interfering with my mental health and well-being, then I would consider asking for professional help such as counselling or, if appropriate, anti depressant medication.

I did have some counselling for a short while and I must say I did enjoy it. I dont know if it helped my outlook in the long term but it was very self-indulgent (in a good way!) to have a place where all the attention was on me and my fears.

I wish you all the best Jesse and if those anxieties become debilitating, do get some help for them.

Love and strength
Joan:rose:
 

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what I do is just not allow myself to think like that. I have no idea why I am so good at doing this, I just am, there is no particular virtue to it but I must say it is very useful ability I have.

Honestly I don't think lupus will kill me, even though I know that is at least theoretically possible seeing my lupus keeps taking a bite at my brainstem. I guess if I woke up worrying at 4am I would get up and do something to take my mind off it.

I worry about other stuff (kids etc) just not lupus, just made that way I guess. Lupus annoys me rather than worries me I guess.

Hope that it doesn't wear you down too much - it's bad enough to have to put up with the disease without having to worry about it as well.

cheers

raglet
 

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Discussion Starter · #8 ·
Joan and Raglet, thank you for your replies. I'm feeling better today. I do volunteer work on Fridays and that always takes my mind off things. Busy is better. But overall I find it's hard to ignore what's going on because of my brain fog. Every time I become forgetful or absent-minded, I feel stupid, because others have been a witness to it, and it reminds me of what's causing it. I guess eventually I'll just learn to ignore it. Oh well, this too shall pass.
 

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Dear Jesse,
Please do NOT worry about brain fog, other people really do not take as much notice as you think. I am very clumsy,and can be incredibly thick but honestly it is rare for anyone to notice,or if they do they are just glad it wasn't them doing it.
If you can accept this aspect of your illness it will make a big difference.
x Lola
 

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Discussion Starter · #10 ·
Thanks Lola. I'll try to do that.
 

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Hi Jesse,

The absent-minded moments are embarrassing. What helped me was looking around at other people my age. They are having those moments also just not as frequently. Many of my friends say it makes them secretly worry that they might develop Alzheimer's. Since they understand what it is like it is easier for me.

Take care,
Lazylegs
 

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Discussion Starter · #12 ·
I'd like to think that they understand. My mom, aunt and cousin died from Alzheimer's and right now I'd prefer to think my forgetfulness is from lupus, which I believe it is. I may forget where I put the keys, but I still know what the keys are for! LOL
 

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Jesse,

I know all to well what you are going thru. There are many nights I do not sleep or I wake up way early and I have al that time to think about the what-if's. I have fully accepted my illness of Lupus and all the other minor problems I have. The big ones, not so much. Lupus is a big one for me as is the fact that I wear 4L of oxygen 24/7. I worry about little mundane things like having my house clean to big things like will I die early from lung disease. Am I gonna see my kids graduate, get married, have babies, oh my how my list goes on.

So, when things get that bad, I resort to my antidepressants and hope for the best. I stay in my room, holded up like a rat, waiting.


Nancy
 

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Discussion Starter · #14 ·
Wow, Peony, my heart goes out to you. I not only wish that you see grandchildren, but that you see them graduate and have babies too!
 
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