I have become obsessive compulsive. (vent, long)

[inmoni5]

I started w/ the dx and being sad, then it went to it is what it is, then optimistic, now obsessive. Obsessive to the point that I am searching everywhere for answers. Maybe a different doc? Maybe they will know more or know of some miracle drug or....who knows. I know there is no miracle here. My DH finally sat me down the other day and told me..."hun, you have ms, there is no cure, no one can tell you anything that you want to hear." "It is what it is and we will just have to deal w/it as it comes" I cried so hard when he said that, because I know he is right.

They think I may be progressive but they need to give it more time to see where my disease course is going. My DH says that "we just need to keep moving forward, and not worry about where this is taking me, to make the best of each and everyday and just take it as it comes...as there is nothing we/anyone can do about it."

Oddly enough, he's right. Sometimes we just have to play the cards we are dealt and push forward the best that we can.

Becoming completely obsessed over this does no one any good. The past week has been a horrific week for me and I think I just went a tad overboard. I have told my friends that if I start rampaging about ms to please try and change the subject so that I'm not dwelling on this. I don't want to live my life around ms.

It is hard because I have so many symptoms all in such a short time that I am more or less just scared of what is to come. I hate this disease and what it is taking from me. I am too young for this. I just pray that I can make it through my children out of school before I really get bad...but the way it's looking...it's not going to happen.

13 years is a long time. When we are talking a progressive disease that is moving this fast. UGH...I don't want this!!

[1936siol]

compulsive MS

MS can get you down or you can go along with it. You won't believe it but when they told me I had MS I was happy. I finally had a name for what I had. I Had gone so long with doctors telling me nothing ws wrong or at least what they said meant that. I realize that there are many people out there much worse then I am so I just thank God I'm not them. I have learned to do many things a different way. If you just find the good things in your life the bad things aren't as bad. Probably the best thing in your life is an understanding husband. Thank God for him. It will make things a little better.

Lois

[maximumlite]

When I first go my DX I was like you and lived on MSW always waiting for the new post with some symptom and would google that with MS at the end. It got to where I was getting more depressed and with so many new people coming here I even wonder'd if they really know how many people have MS. I finally forced myself to stop coming here every time I got near my computer but worried I would miss something important. I now have a handle on things and I can't change the outcome. I now only come a few times a week or if I have a question, to search for it first. It will get easier with time. Good luck on your journey.

[Sdickerson1]

Im progressive and about to switch from gilenya to , dx Aug of last yr

I was devastated at first, then I went through this very positive phase where I was (according to them) touching and encouraging people who came to visit me.... I felt spiritually blessed somehow, now after a year of this and losing my job,ability to drive due to my sight, my independence and things I'm used to taking my kids to do-- I'm in a weird place of hurt and "who am I"

You are lucky to have a supportive husband!!! I do not, That makes all the difference in the world!!

You will go through many phases but allow yourself to go through them is my advice...

Best of luck!!!

[MyGirlsMom]

inmoni5, I could have written your post....I think I am married to the same man! My DH has the same attitude and I too am working on living in the present. I think the challenge is the sxs, and for me, especially pain. From the waist down is getting more difficult and it is hard to take care of my family (two daughters...middle and elementary school) and do my job some days. I understand....

[0485c10]

I think i will start another thread on this subject..you list your location as WI--and the temperatures are changing drastically with the season change--which affects our symptoms--its not just hot temperatures that affect ms--its changing temperatures that do too....so you have that going on right now & i will start a new thread on the subject.

[inmoni5]

Thank you!!

@ Sdickerson1 and 1936siol
I HATE all the phases, I'm going through...but it does make sense. Thank you. I love my DH. But as alot of you know we've had some REALLY hard times through this. And we still do. Sometimes, he just knows the right things to say. At first he wasn't understanding at all!! I think he went through the exceptance procedure harder than I did. He ignored it first...then was completely P'ED OFF. That p'ed off lasted for about 5 months. It's not completely gone but I think he's understanding more each day. Of course I constantly have to remind him that just because he's p'ed off at this disease that he can't just take it out on me or our girls. That helps when I tell him because then he realizes how he is being. I cried so hard the other night when he consoled me, it was great to FINALLY know he was on my side in this.


@ 0485c10
As far as the weather....UGH. I do understand what you are saying, it has been up and down and all around. But w/saying that....would I be having daily issues since Feb??? I know you have told me before that the first year to two are the hardest before your body adjusts and things calm down a bit. So I try very hard to keep that in the back of my head at all times. I always say, once this calms down, I can...(fill in the blank). But that thought continues to be pushed back farther and farther.

@ MyGirlsMom
The pain, YES!!! All from the waist down 100% of the time!! I NEVER have a minute w/o pain and it's horrible. Do you take anything for the pain?? I take Baclofen for spasticity but that doesn't even touch the pain. I've heard Gabapentin is good but I'm not sure???? I've got 3 girls, 2 in elementary, one in middle school. I feel ya!!

@ maximumlite
I was like that at first and then I kinda faded out a bit....now here I am everyday checking things over again. UGH...I'll calm down again, I'm sure. I just go through these spurts and it's all I can think of. Especially, when new symptoms come and stay. Just get scared I guess. Thank you for understanding.

[MyGirlsMom]

hello again. Yes, I just posted on another thread about my pain in my legs. One drug that has helped is Amitriptylene. I take about 5 mg at bedtime and that does seem to take the edge off. I also have a burning pain in my right leg (calf). It varies on the intensity from day to day, but some times it makes it hard to focus on anything. I think my pain tolerance is greater than I used to give my self credit for.

My DH did go through similar situations as your husband. We are now just two years since dx and he has become much more understanding of me and my limitations. Some days I do cry and complain...I know that is could be SO MUCH worse and that overall, my MS is mild. (Then I wonder how I will do when it is not mild...that freaks me out!)

Having young children makes MS hard to manage...there are always so many things to be done each day...especially getting them to and from activities and school added to working. I am really trying to live in the present and not think about the future....

Thanks for sharing...it is nice to connect with other women that are going through the same issues and challenges. Let us not give up the hope!!!

[0485c10]

immoni5--i just want to give you such a big hug--yes the weather is causing a problem & ms is causing the biggest issue but it all adds together and causes tipping points--don't underestimate those tipping points.

i'm near menapause so there is aging stuff, weird hormonal stuff, ms stuff & frustrating weather stuff--- to discount any one discounts me as a person, its what we complain about with doc's only viewing us as a diagnosis when we are a person with a life...and for me life has hormonal symptoms, long term unemployment through disability, age, ms & now the frustration of changing temperatures making my already unpredictable ms even more frustratingly unpredictable, where when the weather was a little more stable i had greater predictability.

the weather change on invisible symtoms, ie. cognitive, emotional symptoms are the worst because not only does it take others a while to understand i am being affected by the weather, it takes me some time to understand that also.

[0485c10]

btw i saw a previous post were you wrote of frustration of not remembering what you told the doc at your last appointment---i started a doc appointment sheet for every appointment. i used excel. i made a folder on my computer called...MSDr appt..i created an excell file for each appointment called NeuroApptMMMDDYY...

first line of the spread sheet i wrote the doc name & time of appointment. i divided that excel spread sheet by first section
I. current status
months since diagnosis
month since started med
months since last relapse treated with steroids
months between last 2 relapses
months since first relapse after treatment started
list of month and issues since diagnosis.

(since i just copied this sheet & edited for next appointment i had a quick running total of all issue since diagnosis,it made me feel more in control)

II. Issues for this appointment.

III. Results

listing of all appointments since i started doing this..

Date,Dr.Name, time, main issue discussed at appointment....

again since i updated the neuro appointment sheet for every appointment i had a running total of all appointments, i could review and it made it easier for me to have this information already organized and accessible when i applied for SSDI, i was glad i did it. its always nice to have done something in advance when i don't realize how helpful it will be...

long ago i decided, like before i knew i had ms, but was recognizing that i was not as sharp as i was(MS maybe?).. i decided to off-load my memory with notes so my brain could spend more time thinking.

one of the thing i did was start those neuro appointment spread sheets, which i could review before my next appointment and check that i brought up everything i meant to at the appointment....i call it off loading my memory..at a few appointment i just handed the sheet to the doc to let her know what i was concerned about.

i no longer do them any more because i trust my doc more and my ms is more stable. although for this next appointment i want to talk to her about switching treatments--i have a spread sheet started of what i want to talk to her about(I always of-load my memory with notes), i suppose i will just rename it to keep a record of what was discussed at my next appointment with all the rest of the doc appointment files..

perhaps you should start something similar, you never know in the future you may be vary glad you did so, like i found when i applied for SSDI, i didn't expect it to be so helpful when i started it, no one can see the fut

[inmoni5]

@ 0485c10

That would totally work for me!!! I've thought about it, I just always forgot to do it. I have a neuropsych eval in Dec. the wonderful 8 hour examination. UGH....but like the doc said it would give us a good baseline. Or somewhat of a baseline rather...UGH

Thank you!!