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Dazed & Confused

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#1 Sd53


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Posted 12 February 2008 - 02:50 PM

Friends, :unsure: I'm wondering if any of you have the emotional struggles that I seem to be having with dealing with my family and friends and/or working relationships? Sometimes, I feel like a basket case...it's hard to say just what happens, but today especially, I'm on an emotional roller-coaster. one minute I feel fine, the other I'm crying because I said something the wrong way to another person I care about. Sometimes, I don't even think I say anything wrong, they just don't understand me? Well, without saying too much in detail, I'm not sure what we are able to say about anti-depressants, but I'll say I'm on them. My rheumatologist said I'd need them along with proper diet and exercise with this illness. Of course not everyone needs them, I'm sure, but I seemed to. So I'm trying to do all this, diet exercise etc., but my mouth always gets me into trouble. It's either that or I take everything in a personal way, and I misunderstand everyone else. What can I do? Drag them to my next Dr. app't., so they can hear for themselves what I go through? I'm sorry, but we all need to vent once in a while right? :angry: Anyway, I'd love to hear your feed back, maybe it's one of my med's I'm taking that makes me feel like I need to spend a few days in a loony-bin, ie. mental ward. I hope someone else out there knows what I'm saying. Also, please note, I'm not trying to get pity, just understanding and some ideas what to do when I feel this way...whatever way that is! :huh: Thanks SD

#2 Kamlesh


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Posted 12 February 2008 - 04:31 PM

Hi SD,

Sympathize with your situation.
I would like to start with saying “been there and done that”.
It is not unusual for most of family members and friends to shy away from the relationship. I would not hesitate to say, 2007 was the worst year in my life.

It is helpful to have right anti-depressant and psychotherapy.
All these helped little, but I was able to generate little bit strength from support from sister and slowly built up my emotional well being. Having long walks and writing notes to me were also very helpful. I have no expectations from any family members or any friends. I rather found more support from “strangers” on this network.

Do not penalize yourself. The main issue might be the overwhelming health and emotional issues. This is a wonderful group and you will find lots of support here. If there is something I can help with, send me a PM and I will be glad to chat with you.

Please take care my friend; life is too precious to be wasted on these items. Take control of yourself.
Kind regards,


#3 Snowbird


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Posted 12 February 2008 - 04:40 PM

Hi Sd53

Sorry to hear you are having such a bad time....been there, some days back there. Perhaps you are simply scared...you're also fairly new to this too, aren't you? It's really, really hard, especially in the beginning...I think it's our human nature; fear of the unknown because this disease is so unpredictable that we never know when/if/what might or might not even happen to us, that's scarey for anyone and you are definitely not alone. I know with me, I kept reading everything I could get my hands on and my mind was running all over the place about everything...try not to do that to yourself (if that's happening?). From what I read, some med's can have side effects (you likely did this already) but did you check to see what side effects are associated with your particular one (you can always call and ask the pharmacist too if in doubt)? Did you consider calling your rheumatologist and asking him/her? They should be able to tell you if the medication can be adding to your emotional struggles. Try to give yourself time to adjust/cope. Hope this helps you at least a little.

I'm sure the others and the ISN Team will also be able to give you some guidance, they are just great supporters for each other and us on this site!
Sending good wishes your way!

#4 Shelley Ensz

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Posted 12 February 2008 - 04:54 PM

Hi SD,

You are not alone, that's for sure, and many of us here relate to what you are going through. Please keep in mind that I'm not a doctor and I have no mental health training and I may be wrong -- I often am! You may consider these thoughts and toss out whatever doesn't apply to you, and of course, handle situations however you best see fit.

In my humble (and probably not very good) opinion, it may be that you are trying to do too much by yourself. It is very common for us to lack the skills necessary to deal with chronic illness. Taking antidepressants is a great start, but most of us find that it is most useful combined with counseling and education on how to deal with chronic illness.

It is way too easy for us to ruin close relationships, sometimes irreparably, during the initial phases. We can get hung up in so many stages, or stranded in self-pity, or not understanding why no one seems to care or understand what we are going through. Many of us around here will understand, of course. But chances are rather slim (to none) that any of our family or friends or co-workers will "get it", even if we explain it really well and they try really hard.

The thing is, they don't love us any less if they don't "get it". How could they understand, unless they were living it themselves? And how could they actually live it? They can't, of course.

Illness and people's reactions -- even doctors reactions -- to it just are not what we might expect from watching TV or movies. What I have found is that the sympathy we might get from having even a common cold (when we were healthy) is astounding compared to the cold shoulders we can get with chronic illness, because it is a whole different ballpark. Or worse yet, something as unheard of as "scleroderma". Most of our loved ones have absolutely no clue what scleroderma is, and many of them never will. But it doesn't mean they love us any less; and now is the time they also need to know that we won't be using the illness as a reason to show our love to them, any less.

Those are harsh realities and the sort of thing that a good counselor can help us come to grips with. There is ample joy and exuberance still to be found in a life with scleroderma! A whole new world of happiness is waiting, just around the corner! And our friendships abound and deepen when we take the stress off them of being so disappointed in their seeming lack of compassion or understanding.

We can get through this phase successfully, only if we use it as an opportunity for personal growth and developing more skills in dealing with stress and change and chronic illness. It's not necessary for any of us to go batty or stay on the roller coaster. In fact, any of us can take a deep breath right now, and decide to get off that roller coaster.

As I'm sure you've figured out already, it's absolutely not okay for any of us to alienate those we love, or even those we can barely tolerate on a good day, during this time. Much as we'd like to and much as we're tempted, we cannot let our misery be an excuse to verbally abuse other people or leave disruption in our wake; we each own the obligation to mend our attitude first. So it's an idea to consider, to be liberal with our apologies to all and sundry, and take time out to take steps to understand ourself and the enormous challenges we are facing, whenever we are not coping in a positive and successful manner in any phase of our illness.

And it's always a good idea to just chill while allowing some time for our meds to kick in, too. :)
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#5 Sd53


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Posted 12 February 2008 - 05:21 PM

Thanks for your understanding and knowledge all who have commented already. Shelley, thanks so much for taking time to address so many issues I do face. Actually this is my 4th year (probably 5th before actual diagnosis), an all my meds have kicked in I think :huh: It's probably most difficult with my grown children, they're young and, they don't understand. I don't want to scare them, so I try not to talk about it too much, however I have blown up too many times about things they are doing I can no longer control etc.. Also, after I wrote in a while ago, I went to the ISN Newroom and looked at information that was helpful (on diet & exercise, vitamins etc.). I think what I did, was over did it at the gym today and came home and got overwhelmed with leg pain stuff. I am so disappointed I cannot do what I used to in so many areas of my life. That, I'm still trying to deal with. Anyway, I know clearly I need an attitude adjustment and a way to blow off steam before I ruin all my relationships. I wish :rolleyes: I could be one of those layed-back people that never let anything bother or upset them...they are wonderful people who know how to let all the small stuff roll off their backs. Anyway, good wisdom from you all, just to know I'm not kookie and I'll continue on...just to find the things I enjoy the most in life. Thanks again ;)

#6 peanut


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Posted 12 February 2008 - 08:39 PM

I'm a little late but I just wanted you to know that too have "foot in mouth disease"... meaning I say too much. I think it's cause I'm on disability now and my cat doesn't always make for intelligent conversation. Meow?

There are many different kinds of antidepressant/antianxienty meds designed to take the edge off. I take Lyrica and it's wonderful. Perhaps you should talk to your doctor about trying a different kind.

I have sad days and bad days. Instead of blubbering to my friends and hubby I tell them I'm sad and it helps them understand instead of guess how I'm feeling. It sounds totally elementary but sometimes people don't get it or they are too caught up to notice you need a hug. I tell hubby I'm sad. Hold me. Hold me longer. This way I get my needs met.

I've also funneled my energies into a hobby. Mine is watercoloring and socks. Yes, socks and small treats for my support group - Nothing over $10 total/mo. I give them to the new ones and birthdays in my group. I guess my socks effort can be summed up with something I heard: "when you fill someone else's life with hope you end up adding a little more to your own."

Hope & Health,

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#7 CFMBabs


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Posted 13 February 2008 - 12:23 AM

Just going through similar myself.

Sometimes I feel that this really brave person -- me! Is being too brave! I never share my ills with anyone especially my family. They think I'm just good old me! and to an extent I like it that way but, there are times when the whole thing just gets me down and although I still wear a brave face, my family expect me to carry on as normal.

I've just written a blog stating the fact that my family are giving me no encouragement to succeed in anything I do. As long as it's for them it's okay, like getting out of bed in the morning and taking my daughter to college. That's expected of me day in day out. The meals I cook, even though I can't eat solid food myself, is again for them and that's okay.

I've had an idea and all of a sudden I'm not fit enough to follow it through according to my hubby. I no longer work, I'm bored, feel useless, depressed and I have so much more to offer than that!
I will recieve no help or encouragement with what seems like a pointless venture, but I'm doing this for myself and I'm not worrying about the consequences.
There are times with this disease that you challenge yourself, and when someone knocks you down it's only natural to spit back. It takes a lot of guts and determination to stay upbeat all of the time and if you ask anyone else how they'd cope, I bet they woudn't have a clue.

Think of yourself as a pretty special person -- we all have ups and down but we especilly have a right to moan or get snappy at times.
Everyone here I'm sure, will have been there at some time -- you are not alone!

Best wishes
Barbs xxx

#8 jaxs


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Posted 13 February 2008 - 11:40 AM

i feel very missunderstood and sympthise with u all and totally understand where u are all comeing from, at times I feel a right idiot, nutter, brain dead, coz I can't pronounce words or even think of what I want to say ,it feels like bits of my memorie has been erased I dont remeber what im talking about, or forget names of things even the simplinst things (LIKE SPELLING) like going throught a red light coz ive forgotten whats it means , it can be dandrouse at times and people laugh at me (at times I laugh at myself) but I get so frustrated and sick of it all, im fact I think if there was a scream board on here I might be close to filling it :blink: and none of my pals have a clue wot im going on about when I say im ill, so now I dont bother haveing pals, too much hard work.. jaxsx
live life for today and not for tomorrow

#9 ladyhawke


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Posted 13 February 2008 - 01:48 PM

New here but still would like to add my 2 cents.....I have mood swings now that I never had before.....alot of it is the drugs....prednisone and imuran....I do have great support. I've also found that the worse (as far as sickness goes) that I am, the better my family is. If they see that you can't move or get out of bed, they are there for you. But as you start to improve, they don't get it that you are still very ill. You know? I would encourage anyone to "drag them with you" to your appt's. Take them right in with you. I took my sister for the first time to my last rheumatologist's appt. I think it was quite an eye opener for her. I didn't speak.....he did. He was wonderful and spoke to her and included her. My hubby usually goes with me but he had to work so she went and I think it was a good thing. Hearing it from me just didn't have the same impact as hearing it from a "pro". I've also printed things out and let them read them. The hubby takes the stuff to work and reads on his break. The more informed they are, the better. And it's totally different if it's a source other than "you" that they get the info from. The can't "feel" what we "feel". I haven't taken anti-depressants, hope I don't ever have to. The couple of times that I've really "lost it"..... I've managed to get through. Not an easy task. You're not alone....Hugs - Lisa
Life is NOT meant to be a struggle. Life is meant to be joyously abundant.

#10 relicmom1


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Posted 14 February 2008 - 04:07 AM

I see everyone else has done a great job of summing it up! We do have a GREAT deal of the emotional rollercoaster going on, not only as we struggle to be diagnosed, but once we are newly diagnosed and throuhg out the the rest of our lives. There are alot of us that don't get the very visable skin changes, so to the "regular" world, we look perfectly healthy. They have ABSOLUTELY NO IDEA of what we suffer. But WE know what we suffer thru and how terribley difficult it can be. I think all of us are either on or have been on some type of "mental helpers" I personally take two and think I may need some adjusting up or changing. It is difficult not to be able to do things the way you used to, or to enjoy even the simplest things. You MUST have a great doctor and even more so a SUPER SUPPORT SYSTEM, as we have here. :) NEVER,,,EVER hesitate to reach out if you need someone, we will grab your hand and help you through!!One of my favorite sayings is "This too shall pass".....I say that ALOT :P
Peace :)
Barbara aka relicmom1