MS - you are always on my mind!

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

MS - you are always on my mind!

Postby reece » Tue Apr 21, 2009 8:47 am

Wihout a doubt, the biggest struggle I have with MS is that IT is the predominant issue on my mind and is constantly taking my thoughts, energy and time that should be going towards my job, my family, myself, etc.

I don't even want to think about calculating the minutes hours, days and years I have wasted in my life thinking about MS.

I can see that it would be warranted and even expected if I was going through an exacerbation, but even in its quiet state, the daily reminders of MS and how it has already or could effect me do not go away.

Does anyone with MS have any advise as to how they are able to deal with this demon?
User avatar
Getting to Know You...
Posts: 16
Joined: Sun Jan 18, 2009 4:00 pm


Postby me_x_5 » Tue Apr 21, 2009 10:18 am

Sorry, my advise is STOP living in your head!STop leaving those thoughts up there and talk to someboby,so they dont play like a broken record no more!Im really sorry that u got what u got!And :( i hope you will get some more good advise!
User avatar
Family Member
Posts: 56
Joined: Sun Apr 12, 2009 3:00 pm
Location: Washington State

Postby sou » Tue Apr 21, 2009 10:38 am


I have just come back from my psychiatrist. I have found the combination of psychotherapy and antidepressants to be quite effective. You are not crazy. What you are through is absolutely reasonable and expected. But this is not enough to justify quitting life as a whole. You are wasting time that will never come back. I think that when finally all you have in your mind happen (which is very unlikely that ALL of them will happen), you will feel even worse for the missed time.

If you ask me, I would agree with you. I would rather end my life than continue it. MS has really haunted my life. But I am not sure that I am in a mental state which allows me to think clearly. I definitely can't take any decisions for myself. So, I have let myself to the hands of the specialists. Nothing to lose. I would have been dead, anyway.

Please, consult a specialist. You might be disabled, but you don't have to be depressed, too. Don't take decisions when in an altered state of mind.

User avatar
Family Elder
Posts: 582
Joined: Sat Dec 20, 2008 4:00 pm
Location: Greece

Postby notasperfectasyou » Tue Apr 21, 2009 11:44 am

Cut yourself some slack. On some level it's normal. All of us here think about MS a lot, that's part of being here. Now, when it becomes consuming and gets in the way of thinking about other stuff that is important, yes, it can become obsessive. But, just keep in mind that many of us here spend a lot of time on MS and we don't even have MS. I'm not trying to belittle your concern, and if I have, I'm sorry about that. Perhaps this is overwhelming to you and it's preventing you from sleeping and having fun times with your friends. A psychologist never hurts, unless you get a bad one. For the record, I spend a LOT of my time on this, more than I should - but it's not so much that I'm slacking off elsewhere in life. I see it as like an intense hobby, only one that happens to have much greater benefits than most normal hobbies do. Ken
It would be really nice to be able to put links in here

If I have included a bad link, google the word "Scholar", click link for "Google Scholar". Search for the name of the paper and author in Google Scholar.
User avatar
Family Elder
Posts: 800
Joined: Thu Feb 09, 2006 4:00 pm
Location: Northern Virginia

Postby Wonderfulworld » Tue Apr 21, 2009 12:25 pm

Reece I think it's part of the adjustment to living with MS, long-term. I used to visualise my MS in a lovely green handbag, with me, walking up to a bus stop and leaving the bag there! But real life means you carry that bag around all the time.

I feel there is a very very fine line between adjustment and depression, and perhaps you'd gain some relief from the more negative thoughts that are overwhelming you if you explored the idea of anti-depressents with your neuro/gp.

I suspect living with a high level of fear or dread would not positively impact on your MS, and it certainly is exhausting - been there, done that, especially in the first 2 years after diagnosis (I'm now nearly 11 years after diagnosis and the panic does die down).

I am taking a very low dose of antidepressants for nerve pain, and they also help my overactive bladder at night. But a lovely side effect has been a slight reduction in the negative worries that sometimes got the better of me. I'm not saying I don't worry, and there are days I unfortunately spend the best part with a sense of fear in the background when my MS is revving up, but I have to be honest and admit the AD's are helping more than my nerve pain.

I used to be very rigid about not taking AD's - I didn't want anything changing my personality. But I realise now that fear, and unrelenting nerve pain was changing my personality and that by treating both of those I've brought myself back to some kind of normality again.
Best of luck
Concussus Resurgo
RR-MS dx 1998 and Coeliac dx 2003
Tecfidera, Cymbalta, Baclofen.
EPO, Fish Oils, Vitamin D3 2000 IU, Magnesium, Multivitamin/mineral, Co-Enzyme Q10, Probiotics, Milk Thistle, Melatonin.
Family Elder
Posts: 776
Joined: Sun Aug 27, 2006 3:00 pm
Location: Ireland

Postby robbie » Tue Apr 21, 2009 1:19 pm

The only way to beat ms a little is do good things while you can, for most people this is a long ride and until/if it really gets you just keep it down in the basement. To me this is not something AD drugs can fix but try them if you feel you need to. Use the time that you have now to make things easier for yourself in the future, you will figure out what you have to do.
Had ms for 24 years now.
User avatar
Family Elder
Posts: 1175
Joined: Thu Jan 27, 2005 4:00 pm
Location: Northern Ontario, Canada

Postby LR1234 » Tue Apr 21, 2009 1:58 pm

All I can say is they are getting closer to learning how to remylinate and how to stop the process of MS everyday. Don't worry about the future or spend your time thinking about MS as hopefully soon they will have the tools to help us all get better xx
Family Elder
Posts: 1516
Joined: Wed Feb 11, 2009 4:00 pm
Location: California

Postby peekaboo » Tue Apr 21, 2009 2:22 pm

Robbie said:

Use the time that you have now to make things easier for yourself in the future, you will figure out what you have to do.

this is good advice! you now know you have ms accept it (does't mean you have to like it) by doing this your emotions and ego step aside so you can get done what needs to be done. ( I know this isn't an easy thing to do but you will slay the emotional demon) Be grateful for what you have (i am wheelchair bound now w/PPMS, can't bathe myself, pee myself overnight & wear adult pampers, can't work anymore, in menopause (doouble whammy) and I still have a sense of humor thank goodness.

educate yourself on MS support groups (thisims is the best! glad U made it here) disablity assitance, independent living aids etc. and don't forget to educate your family, get them to review thisisms to get other ms stories etc. If you are going to think about ms all the time U can do it constructively. :wink:

Hope this helps..
User avatar
Family Elder
Posts: 623
Joined: Sun Feb 08, 2009 4:00 pm
Location: Arizona

Postby Bubba » Tue Apr 21, 2009 8:20 pm

My Neuro thought I was angry, and over reactive, and obsessed because I thought about it every waking minute. He put me on Prozac. I thought he was the crazy one. BUT, I just realized that I havent been consumed with thinking about it since.
User avatar
Family Elder
Posts: 488
Joined: Fri Feb 13, 2009 4:00 pm
Location: Lithia (Pinecrest, Florida

Return to General Discussion


  • Related topics
    Last post

Who is online

Users browsing this forum: No registered users

Contact us | Terms of Service