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Posted: Mon Aug 02, 2004 5:14 am
I hope someone here has an encouraging word or two. In April I was diagnosed with RRMS after having some strange neuro. symptoms. Looking back over the past 6 - 8 yrs., I had other indicators (2 or 3 other strange occurences) that went away 100%. My strange symptoms this time are almost gone. I started on Betaseron right away and am tolerating it just fine I guess. My latest MRI showed possibly 1 new spot but at least 1 old one had shrunk considerably. Neuro. says this is good so early in treatment. I'm a 0 on disability scale at exam time was a 2 in April. I'm 41 and have a 2 year old and a 4 year old that are the best things that have ever happened in my life, besides meeting my wife. Here's the problem.....................pychologically I'm a basket case. I think about this all the time and am always worrying about the "what ifs" and what "could" happen to me. I'm cheating my kids and wife out of a "fun" Dad and feel awful about this, it makes it worse. Am taking Lexapro (had taken it a couple years ago too) but feel a drug can't make me think "better" things. I'm causing my own anxieties and depression but can't help it.
Some POSITIVE thoughts from any of you that I can remember and turn to would be greatly appreciated in those bad times of the day..............PLEASE!
Thank you all, although really new to this site, I like it already and look forward to reading the good news posts I find here, and reading forum posts
Thank you all, hope someone here can give me some encouragement!
Posted: Mon Aug 02, 2004 9:11 am
What you are going through is not unusual when first diagnosed with MS. It is a life changing event and it would be odder if your mind was not running through a million different emotions and what ifs. It will pass!
Some people find it passes quickly, other people find it's not until the first major relapse that it really sinks it, some people switch in and out of denial.
A lot depends on how you were before the diagnosis - I mean by this how did you deal with stress and problems? Were you a natural worrier, a pessimist or an optimist?
The process of coming to terms with MS has often been likened to that of grieving. As with grief it goes through many stages and not in any particular order - denial, anger, guilt, acceptance more anger, more denial etc etc.
I can't say much more than that, I went quite CRAZY in the first 6 months after diagnosis and yet have always been 0.0 disability wise so MS has very little impact on my life. And because of this it was very easy to imagine all sorts of armaggedon like scenarios. I realised I had to get a grip pretty quickly or it would take over my life.
What helped me
1. Finding out as much as possible about MS, the disease process and the what ifs. Fear is the worst thing about this condition and the more you know the less you fear. Get some control over the process.
What's the worst that can happen? Ending up in a wheelchair, unable to speak, dribbling and drooling? How likely is this? Not very. Read the stats -MS is a very variable condition and for most people it doesn't even come close to this stereotypical picture.
As humans we can adapt and cope with just about anything, you may not think it from the position you are now in but should the worst happen you will find ways of coping. And the reality will never be as bad as what you fear.
2. Use cognitive skills to refocus when you feel your self dwelling on the MS. See if you can get a referral for Cognitive skills training, you may find this extremely useful.
3. Take up hobby. Something time consuming and obsessional. I took up jewelry making for about 8 months as it really took my mind off things and required lots of concentration. It's amazing how something so small can shift your perspective.
4. Live for the day. Nothing in life is certain, it wasn't before you were diagnosed so why should it be now? Enjoy your time with your family and try to find something to laugh about every day. Essentially take a holiday from your MS and find other things to think about and do. Start by making this a day off from MS, then a weekend break, then a two week vactition. See how you get on and after a while you have begun to retrain your mind.
It also helps if you get bored quickly. I always thought this was my biggest weakness but I found it is really benefical as I just bored myself half to death about MS! So decided it was far better to get on with my life, afterall I could be run over by a bus tomorrow.
Posted: Mon Aug 02, 2004 11:54 am
I am a natural pessimist, and I did the same thing after my diagnosis. I think it is a normal reaction, but one you need to get a handle on before you let it overpower your life. Remember as well, that the interferons can cause or contribute to depression, and lexipro does not work for everyone. I would definitely discuss this with your Doc. One of the things I do EVERY DAY, is when i wake up I take a moment to go over the positive things in my life, like the ability to maintain a job, 2 healthy children, my wonderful animal,s , people who love me, ect.. Some days this works, and other days I obsess about how MS could affect my life, but things are better now than when I was first diagnosed. I still get really scared when I have problems with MS that last longer than a few days, but I always get better, so thats what I tell myself. Also, learning everything I can about MS has helped me not to be as scared. Don't be too hard on yourself for this reaction, hang inthere, it will get easier.
Posted: Mon Aug 02, 2004 12:47 pm
I was stunned when I read your post, Steve. You sound so very much like me.
I too proudly claim that I am blessed with my wife and 2 young children (10 & 8). I too am a male(48) and live in Michigan(near Lansing). And, I too struggle with the psychological you speak of. I don't understand the emotional roller coaster and hate the unexplained anxiety that waves in and out without warning. I take Celexa and Buspar. I don't know what my disability rating would be. I was diagnosed 1 year ago, take Rebif, and appear "normal" to many. But, I have a list of many effects of the MS that those closer to me know. So, I assume my disability rating would be considered low.
I understand what you are saying more than many of your non-MS friends might. I noticed 2 have already posted good responses above. I hope your hearfelt "real" post receives many, many responses- you won't be the only one to benefit-- I will and probably many others will too.
I have nothing profound to say at the moment, but I wanted to take a moment to post my reply. I am a "lurker" at the websites and have rarely posted, but your message caught me by surprise like I was looking in the mirror.
Posted: Mon Aug 02, 2004 1:20 pm
I'll chime in with a "me too" - I agree with all the previous posters also. It's a very common reaction. Unless you start progressing rapidly (an unlikely event), you'll most likely calm down within 6 months of being diagnosed (of course, no guarantees on that timing
It really sucks when you first have to mentally readjust your view of your life, self, family, career, etc. It's going to take some time for most people. I don't think I admitted to myself that I really had MS for about 6 months. But if you're like most of us, you'll progress slowly if at all and realize that you may never endure most of what you are fearing now.
The best thing that happened to me early on (and I don't necessarily recommend this) is that I went to an event for people with ALS (I know someone who ran it). After meeting all those people with ALS, it really pulled my MS into perspective for me. I was really feeling sorry for myself because I was comparing the "old me" to the "new and unimproved me." Once I compared myself to others with a much worse disorder and seeing how they were dealing with it, I was truly humbled.
This isn't to say that a diagnosis of MS is a good thing! But it will take some time to get your perspective back. You've just had a bomb dropped on your life. The vast majority of folks with MS I know recover from that quite well. It just takes time.
Seeking out others (like you're doing) in a similar situation was very helpful to me also.
Posted: Mon Aug 02, 2004 1:22 pm
When I was initially dx with MS I was 23 yrs old, married and had a 3 mo old baby. I was devastated and angry. I went through the old "Why me? What did I ever do to deserve this?" I wondered if I would get to do fun things with my son like go to a theme park or if I would be too disabled to do anything like that. My life seemed to come to a screeching halt.
I decided that I was not going to let MS rule my life. I was going to do my best to live my life as I would have had I not been dx with MS. I know that I cannot do anything at this point in time to cure myself of MS and I cannot control when and if I have an MS attack. In the back of my mind I know I have MS, but I don't think about it all day long and obsess over it. I know that" the unknown" is a frightening concept but if I worried about it all the time it would drive me crazy.
I have also thought about how my situation could be worse. My husband's uncle was dx with a terminal disease which ended up taking his life and leaving his three sons w/o their father and his aunt w/o her husband.
My husband and I decided to have another child. My children are now 5yr old and 3 yr old. I am doing well. I spend as much time as I can going places and doing fun activities with my family. I am very thankful for my understanding husband and my two beautiful children.
A true THANK YOU!
Posted: Wed Aug 04, 2004 3:40 am
I wanted to take the time to thank you all very, very much for the replies you posted. They all have helped me cope. I think most of all, just knowing that other people have shared the same experience. I was begining to think that I actually was having some psychological exacerbation or something. Also, I found a couple of sites with pointers on dealing with this. Will post later, these have helped too and may help someone else.
Again.........THANKS SO VERY MUCH TO THOSE THAT RESPONDED!!
Posted: Sun Aug 08, 2004 4:49 am
Hi, I am 44 year old female who was diagnoxixed in 1999 after they ignored me for 20 yrs prior to that. I am totally disabled. You are fortunate that they caught yours early and started you on Rebif. I just got put on Rebif after taking Copaxone for 3 yrs. Copaxone helped but then my body over rode it and I developed 10 more leasons. I now have 25 leasons on my brain. My usual numbness and inability to walk right I am adjusted too but my vision being messed up is really bothering me. I am having to get someone to drive me where I need to go and that sucks. Other people have lives too and they say they are willing to help you but you have to wait on them to be able to come get you and take you. They also get tired of you asking after awhile(they don't say so but you notice a difference in them). Be thankful to God for what you have and enjoy everyday with your family and don't worry about the what if's until they get there. Maybe your meds will slow it down enough you won't go though what I am. Enjoy your family and friends. Go for walks, ride your bike , play tennis if you like. I miss all those things don't you miss them now ok. Peace be with you.
Posted: Tue Aug 10, 2004 4:41 am
Yup Yup Yup....
Looks like it's unusual NOT to obsess at first after the DX. I sure did. My initial attack probably only lasted 6 weeks... but I was pretty useless at work for at least 6 months. This stuff takes a while.... Body Betrayal is difficult to deal with.
Oh - There's a good side to this too - Fine Example - Our swimming pool. I had always maintained the chemicals, cleaning, pressures on the pump. backwashing the filter etc... My wife only gave 'yeah yeah ok' responses when I would show her stuff on how to keep the pool running properly.
Along comes my latest relapse, I get stuck in a wheelchair... It was pollen season and the pool looked like shit. There was no way for me to get to the valves on the back of the pool shed. With a bit of instruction and some walkie talkies, we were able to get through it the first few times.
After a while, she didn't need me to walk/talk her through it anymore.... She could just do it. Now I'm walking again and have taken back over the pool duties. But I now feel confident she will be able to take care of the pool, even if I am hit by a bus.... (taking MS out of the equation)
My Advice: Be patient, kind, gentle, loving and compassionate with yourself. If you can't do that with yourself.... How are you going to give that to your family?
Being one I believe the best husbands are the ones who love their family beyond all reason. Not someone without any body difficulties - who is a freaking jerk /drunk / misogynist you name it.....
Just this past weekend I met the father of a girl whom I had known for years. He has diabetes and had lost a leg (this is not likely to remit) and obviously was in a wheelchair... His wife and daughter were GaGa over this guy... After spending a few minutes with him, (discussing various wheelchair issues) I saw why they loved him so much. He was a genuinely loving and compassionate man!!!
Hugz n Blessed Be )O(