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Thread: Do you ever feel normal again?

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    Unhappy Do you ever feel normal again?

    Hey all,

    I'm just wondering you start to feel normal again after the medications start to take affect. I have been really struggling with depression from, I have a hard time wrapping my head around all of this. I feel like my life have been slowly taken away from me and I have been trying to keep holding onto hope that I will start to have days where I will feel like myself again and can go outside and play with my daughter for more then an hour before I feel sick and have to go lay down.

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    I was really depressed in the beginning too. I started taking anti-depressants because it was becoming more than I could handle. It helped me come to grips with the disease. Being depressed just makes you feel bad which doesn't help how bad you already feel. You will never feel "normal" again, I call it my new normal! I hope that helps some.

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    Many people here have to take anti depressants. Not only is the outside situation enough to depress you there can be mental changes that take place because of the disease and so the drugs can be needed.

    As for normal., we all call it a new normal. You do get better, come out of flares but you have to be careful and know what will send you back into one. Sunshine is one of the things that can cause us to feel bad. High Uv protection sunscreen, long sleeves, hats, UV PROTECTIVE CLOTHING, all of these things can help.

    It does get better. You will find a new way of life that, although different , can be just as rewarding
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







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    Hi Eric,

    I'm sorry to hear that you have been feeling depressed. If it's something that you are comfortable with I would recommend seeing a therapist. No one, no matter how sick you are physically should have to deal with depression as well. It can sometimes be more debilitating than physical illness. When I was first diagnosed a little over a month ago I became very depressed. I was worried that my life as I knew it was over and I was just terrified. Recently I have began trying to be more optimistic and proactive about my mental health. In turn I have started to feel better physically as well. Although I have never been a runner (not only do I have Lupus, but I'm also very lazy haa) I have started to run and have felt significantly better from it (although I know it is not for everyone).

    I have come to the realization that finding out that you have a chronic illness is much like grieving. According to Kubler-Ross, there are 5 stages of grief; denial, anger, bargaining, depression, and acceptance. When I first found of I had Lupus my friends and family tried to rush me too quickly towards acceptance. They immediately wanted me to be optimistic and in their minds to be healthy. But, I couldn't do that. I first had to walk through the other stages and deal with each one individually before I was ready to accept this. And also know that for all of us this process will be different, but I hope that the end result is similar and that you begin to feel better soon.
    Best wishes,

    M

    Lupus, Secondary Raynaud's Phenomenon, Pernio (Chilblains)
    Plaquenil, Amlodipine

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    To build on what M said--

    I recently started seeing a chronic illness counselor (she's a LCSW -- licensed clinical social worker) who is based at the local hospital. A few days a week she works with inpatients, helping people deal with difficult medical decisions and beind hospitalized and the like, and the rest of the time she sees outpatients who have chronic illness and chronic pain. She has been great for helping me as I process what steps I want to take with managing my condition, listens to my concerns, gives me constructive advice, etc. She's also been very helpful in helping me figure out how to regain the fun in my life and how to get out and be social and meet people (I'm new to my town, and have exactly zero friends or family here) in a way that is compatible with my new limitations. For example, I can't go stand at a bar and have a few beers anymore, but I can sit at a coffee shop. I can take art classes. I can go to lectures. She's great about helping me figure out what I CAN do instead of focusing on what I cannot easily do anymore. Having trouble hiking? Let's try swimming!

    Anyway, it's worth asking your doctors if they know of any chronic illness counselors in your area. I live in a smallish town of only 37,000 or so people in the middle of nowhere, and we have a chronic illness counselor, so I bet most towns have one, too!

    Also, my insurance covers visits under mental health coverage, so I only pay $20 co-pay per visit. Worth checking in to, and I hope you find your footing. I know this is pretty sucky. But it's what we have to deal with!

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    Hello Eric,


    Personally, I found after my SLE and MS diagnoses, that the life that I had and considered "normal", went away and never came back. There were just too many lifechanging and irreversible events that happened as a result. Things I had worked for years to accomplish, dreams I'd finally realized, love I found, most friends, and my health, were all gone. Post diagnosis for SLE was one of the darkest periods of my life. I lost hope, and gave up on life. I'm very lucky, and blessed to still be around to talk about it.

    OK, that's the bad stuff. Now, here's some good stuff...

    A person's life post diagnosis is what many, myself included, call "the new normal". And the good news is that with time and determination the new normal can actually be better than the old. It's not going to happen overnight. It's a long and difficult process defining your new normal, but it can be done. One of the best things a person can do to help themselves, is to seek help and advice from others who have been there. So, you are already on the right path. Seeking help, be it from a website such as ours, or from a counselor/therapist face to face, can really make a positive difference. At various points in my new normal, I do one or the other, and I sometimes do both. Depression is very common for people with SLE. It can be a situational depression, and it can also be a depression actually caused by Lupus disease activity in the brain. Some people go on antidepressants to get it under control. I say do whatever you have to do, be it counseling and/or meds to get the depression under control.

    There will be changes-lifestyle, work, friends, family, are all things that can change drastically and dramatically in the aftermath of a chronic illness diagnosis. The changes can sometimes be heartbreaking ones. But a person can survive this thing called Lupus, and live a full and thoroughly enjoyable life despite it.

    It's been 9 years now since I found out I have SLE, and nearly 3 since I found out I also have overlapping MS. I have difficult days, but I also have plenty of really good days too. I figure as long as I have more good days than bad, I'm doing OK. If I can do this, so can you.

    Keep you chin up,

    Rob
    Last edited by rob; 05-21-2012 at 10:54 AM.

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    Define "normal". One size doesn't fit all. What is perfectly normal for one person may be perfectly abnormal for another. In time you'll find your normal. Normal also changes. What was normal, say 20 years ago for me most certainly isn't normal now. Of course being 20 years older regardless of Lupus doesn't help the situation! Normal is fluid; it bends and changes with the days. Normal is NOT rigid.
    "I'm going to get healthy or die trying"

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    Thanks guys for all of your imput everyone has something that I can take from it, I never thought of looking at it as the grieving process but it makes alot of sence. And finding out my new normal and what I can do vervus what I cant do.

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    Hi Eric, I am sure I am repeating what many people have said but here it goes. There will be good days and bad days and yes, your bad days will become fewer and further between. It takes about 2 months for the meds to start making you feel better. It will also be a good idea for you to learn how your body reacts to certain things and remember for the next time. I love to garden and I started to get depressed because I couldn't go outside anymore. This year, I finally understood that I can be outside for short periods and I can be out longer if I pick the best part of the day. I now do my gardening between 6:30 and 8:30 am when the sun is bearable. I wear a ton of sunscreen too. A nurse practitioner I know who has SLE told me to wet a bandanna and put it on my head under my hat to prolong the time I can stay outside. It does work. Eat well, force yourself to exercise so your joints don't freeze up, take the outdoors in small doses but enjoy those small outings while you can. It is a learning process and with time, experience and meds, this will get easier for you! Also, educate EVERYONE around you about Lupus so they can understand your limitations and they can be a part of the solution instead of the problem. Good luck to you!! Take good care!

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    yes you do on medication. I felt so normal that I thought that I was cured, then stopped the medication as i was ''cured''.


    Then I got ill again.


    So the lesson for me was not to stop it because I am feeling better

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