[Roseanne]

Hello...not sure this is the right place to post this, so feel free to shift it...

I was diagnosed with Lupus about 7 years ago, and before that I was independant, assertive, ambitious and dominant...a bit of an ENTJ if you know the Myers Briggs thing.

When the Lupus hit, it really did devastate me...I just gave up mentally, and my personality changed completely...I became dependant, weak and submissive, and I stayed that way for a while.

I am now trying to recover mentally...to get back the parts of my personality that Lupus took from me, but it is causing chaos in my relationships - so many people are not used to the real me! Has anyone else had this kind of experience? How did you cope? Let me know...I am feeling very lonely and lost here!

RM

 

[Surferboy]

Hi Roseanne,




No need to feel lonely or lost. You have all of us on here who are more than happy to help*. But more importantly, I am sure you know people personally who you could chat to

* Should we ever meet some will ask for chocolates in return for help

 

[Tom]

Depression is pretty much a given with Lupus or any disease for that matter. When and how hard it hits you varies from person to person. Since this disease can hit any organ at any time, who really knows what subtle or profound ways it can effect us mentally or for how long.

Most normal people don't understand Lupus anyway, just explain your personality changes on that. The chart would probably read something like "Personality changes due to severe depression caused by Lupus" :bigsmile:

You have to be very happy to be back to your old self, go with it! I may be going through something similar and truly hope I can snap out of it one day, I want my old self back! People you know will have to figure it out for themselves and the ones that knew you before your diagnosis should understand that you are back to you old self.

So take charge and be yourself now! If you don't, you may slip back into the person you were. Thanks for posting this, you've given me some hope.

Take care...

 

[applesauce]

I had depression hit me pretty hard being sick through crucial teenage years. What's really pulling me out of it is the huge change of finally graduating and getting away and starting fresh. When I first got sick I didn't tell anyone, so now that I'm starting off with a whole new set of people I'm trying to be more open so they have a chance of understanding what's going on. I DID have an experience of my getting better personality-wise ruining a relationship. Honestly, I was the one who ended the friendship, because I knew that once I'd made the decision that I wanted to pick myself up I wasn't going to go back for anyone. It's hard hard hard but I feel much better emotionally, I'm stilly a stressy angsty teenager but, uh, I think that's in the job description of "being an 18 year old girl" and I'm improving by leaps and bounds.

I actually did try a therapist, have you? It did nothing for me. But I'm a very analytical person and I sort of understood myself already and didn't need her analysing me, but I know people with depression (disease-related or not) who have found it incredibly helpful to have someone to work through things with them. Good luck!

 

[KarolH]

I understand fully what your saying and how you feel.

Any chronic disease can do this to you.

I was like you, strong willed, independent, full of life and energy, etc...

I went to work everyday, never called out sick and was appreciated by everyone.

Now, I am at home on permanent disability and long for those days when I was the person I used to be.

I met up with a Psychologist who really helped me a lot. I had many sessions with her and through her she helped me realize that there are some things in life we can not change.

My favorite saying...................."It is what it is!" I can not worry about what I can not change. I have become involved in local clubs in my area so that I can get out and interact with other adults and it has helped me tremendously.

I just bought the book "The last Lecture" and it really gave me a new perspective on how to look at LIFE and the trials and tribulations that we go through.

The author of the book, Professor Randy Paush (spelling???) just died last Friday with Pancreatic cancer. He taught at a college in Pittsburgh and through him I have learned so much.

I cried when he died, a man I have never met because of the impact he has had in my life through his book, his words.

I sure hope you can get back to you soon and start feeling better. It is so easy to loose ourselves through sickness but I can honestly say I am working hard on getting back to who I was before I got sick.

Warm thoughts and gently hugs to you my friend.:wink2::wink2::wink2:

 

[Luscinda]

Roseanne,

I totally understand what you mean. I was a super independent, strong-willed, hard working person too and I've changed a lot, due to the effects of lupus.

Like Tom, I also think that what you've been through these 7 years could be depression which, as you know, is not uncommon with patients with a chronic condition. However, this decision to "recover mentally" (I like the words you chose!) is the first step and, perhaps, the most important. As for the others and what they might think of the old & new Roseanne, it doesn't matter so much... although I suspect that they will love it, as it is your most real you.

YOU are what really matters. If you think this is the right time to be "yourself" again, go for it!!!

Good luck ,

Luscinda

PS: As Applesauce recommends I think a therapist could help you with this, although it's up to you... it doesn't work for everyone.

 

[confused1]

Good for you Roseanne! I completely understand what you're saying and agree with others who have commented. It's hard, having your legs kicked out from under you. I'm so happy you feel stronger now. Wish you lived close by and we could meet up -- we could be strong together, LOL.:lol::rotfl:

Seriously, you sound like you have great strength and courage and now you want your life back. Go for it! You will have many cheerleaders here on this site, and I bet in real life too.

Keep us posted. Everybody here is looking forward to your successes.

Sunny

 

[sjink]

HI Roseanne

The best thing for me was going on a mindfulness based pain management course. I learnt meditation and skills to manage my limited time and energy. There are similar stress management courses that do the same thing. That was five years ago and it helped me out of a real trough. I flared recently, got very depressed and anxious and a bit lost. The GP practice nurse suggested I go again for a "top up". It is very easy when you feel a bit better to forget the techniques you have learned. Books by John Kabat Zinn detail this sort of self-help. I got them out of the library again this week and have started meditating and relaxing properly again and although still low am better than I was 2 weeks ago.

I know what you mean about change of character. I was up there as you describe, ambitious, successful, energetic blah blah. Yes I have changed but in some ways for the better. I think I am more empathetic, caring, quieter, peaceful, open, sharing etc etc. I now come out as INFJ on Myers Briggs but was definitely extrovert before lupus really got to me. I have lost what I thought were a couple of friends along the way, people I couldn't keep up with perhaps, or maybe just people too fast and self-involved to slow down to be with me? My partner says I am more relaxed to be around and I am lucky that he supports me when I get a bit down in the dumps. I think my relationships are more genuine now, even if there are less of them.

I found losing one friend really hard but she just acted as if I wasn't ill and didn't seem to hear me when I tried to ask her to slow down, give me more time, do things I could cope with etc. Now I just feel a bit sad that she could not spare the time with me on anything but her terms. I coped with that by writing a journal and recording my feelings.

Maybe you don't get back parts of your personality in the sense you describe when you come "back together again", I think maybe you could have grown out of some of them, knocked a few corners off others and developed parts of you that were tucked away. I think we are born with a personality type but it gets shaped by and adapts to experience. Trick is to try and love who you are now, not mourn the lost bits I guess. Takes time though.

My biggest problem was giving up my independence and learning to ask for help. I found all that rather depressing but actually am happier now I work more cooperatively with people rather than doing everything myself (and thinking I was the only one who could do it properly :rotfl:

Hope this helps. If you are in England and interested in those pain/stress management courses let me know. They run in several areas of England.
Sara
x

 

[sunflowergirl2]

Roseanne, I can certainly relate to how you feel! I've always worked full time (I am an RN and I received alot of satisfaction from my job). I raised 2 kids as a single parent and then I was diagnosed with lupus. That was 13 yrs ago. I did fairly well until last yr., when I had other medical issues. I'm now on SSI for about 1 yr. It's been an adjustment! I've been learning to accept my limitations and find pleasure with my family. I've been on anti-depressants for a long time. They are life savers when you have a chronic illness. It's hard not being "the person you were", but you're still a good person! Cathy

 

[Soundy]

Lupus diagnosis brought on depression for me then added a brain tumor to my mix and that didn't do me any good mentally ... I smiled on the outside while crying on the inside and lost myself for myself ..(not sure how to word that...you all will have to figure it out ) ... people around me didn't realize how bad I was getting inside myself ... I had to be up for everyone as my world was crashing ...

Had surgery last year after watching tumor for three years ...after surgery I lost all hearing on the right side ,the balance nerve had to be removed ...had some facial paralysis as the facial nerve was stretch by the tumor ... my right eye is dryer than ever and so is the right side of my mouth ...I have a salty metallic taste in my mouth that makes many foods tastes awful ...chocolate and coffee taste terrible

what I am saying is I watched me disapear...

I just passed my 1 year anniversary of surgery ... a milestone that the doctors told me would gage my quality of life due to surgical side effects ... that this is where I would pretty much be for life ... my facial nerve healed enough that my eye although still dry does close again ... my mouth closes all the way and the right corner no longer droops ... the metal taste I can live with ... the swallowing problems I had post surgery are mostly gone ... hearing will never be restored as I have to working ear parts inside my head on the right side ...balance isn't the greatest but I can walk and drive ...

All that sounds really bad ... the last couple weeks before my year was up I got depressed because I knew that some things that I had been told may get better weren't going to improve any more than they had ... I was more mad than depressed I think... but talking to people in the support group I am part of opened my eyes to the fact that I was still alive and breathing ...something that was going to stop if the tumor was not removed ... and that I didn't have to be the old me

what I am trying to say in my rambling round about way is that you will probably never be your old self... as someone else here said some parts of the old you , you may have out grown... we all evolve and change through our life time ... a serious illness like lupus which is life altering and with me the added tumor made changes happen faster...

In many ways I am happier now than before all this ... I have learned more coping skills in past year than I think I learned in all the earlier years of my life ...I adapt to what I can do now and have quit trying to go back... I look at life differently .... take less for granted ...

Look and you may find a new better you with a bit of the old you peeking out occasionally