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Has MS Changed Your Mood, Thinking, etc.?
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Has MS Changed Your Mood, Thinking, etc.?

I have noticed that I feel very different. I am over-sensitive, don't 'think' the same, tend to 'react',  get irritated more easily.

Has anyone else oberserved these changes in themselves?

Often, I get upset, but I don't know why.....until later.

Sheila
46 Comments Post a Comment
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Hi yes I too cry and don't know why more often than not. I can get very angry/irrational and easily annoyed. I'm not good with stress anymore and actually think I have changed immensely, its quite upsetting.
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I was dealing with depression and mood disorders for years before I had any physical issues, so I never know what to attribute to MS as far as mental health goes. But any time I feel a bit out of sorts with my mood or emotions I try and make use of whatever resources are out there whether it's mindfulness exercises, medication, counselling. Actually being on here is a positive step for me too!

If you think it may be something more substantial than the usual ebbs and flows of mood, you may want to see if this rings any bells. http://en.wikipedia.org/wiki/Pseudobulbar_affect
Pseudobulbar affect (also uses the charming name of emotional incontinence) occurs with a small percentage of people MS and has approved treatment.

I should say though that this is also associated more with disproportionate or inappropriate reactions with any emotions, by which I mean it could manifest as laughing at something that's not funny as well.
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I am the same way-cry so much more easily, get angry/irrational, easily annoyed.

And I can't deal with any kind of stress.

Whereas, I was always calm, easy-going, and the one everyone came to with their problems.

I don't like the new me. (:
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When you were diagnosed, was your MS Doc able to ascertain from talking with you about symptoms, approx. how long you'd had MS, before you were diagnosed?

When I was finally diagnosed in 11/11-my MS Specialist talked with my husband and I, and she determined from my symptoms, that I had my 1st major MS exacerbation in 1998.

I agree-being a member of this forum has been a huge help to me.

I was gone awhile. When I lost my 1st Yorkie in 2011-I went into a deep depression.

I lost my 2nd sweet girl, two years to the date of my 1st one.

They were my children, so I am back in that depression.

But I am trying hard to come in here.

I'll check out the link.

Hmm.....no, I don't laugh at anything that isn't funny.

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I understand. I am still kind and want to help everyone like I used to but can't as I do not have the same patience and just cry so so easily. I don't really like me much anymore either. I used to be do much fun, laughing all the time, now I cry for no reason and go from being happy to upset or irrational in a heart beat. Its hard to cope isn't it, when you can't control it or understand why.
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I'm so sorry that you are feeling this way, too.
I agree, it is very hard to cope with it. I hate the way I 'react', and then, later, realize why I was upset.
My husband is a very patient man, but even he lost it with me, a few days ago.
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It is hard for our husbands too. Sometimes I look back after and then feel guilty, but its not my fault or anyones fault. I'm sorry that you and your husband have suffered lately and am thinking of you :)
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I agree. I feel it is very hard on our husbands. I know, that it hurts my husband, to see me in so much pain. I have horrendous nerve pain in my spine.

So, I feel guilty when I get upset and take it out on him.

Thank you-our hearts are broken, losing both of our sweet girls. For 17 years, they were our lives, and the house is so quiet and empty without them.

It's hard, because he has so much to do around the house, and they were my constant companions.
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I'm actually the opposite, i've always been very calm and tolerant and because i've always laughed a lot, i'd of said i was content and happy but after my big bang of 09, i've become even more so. I laugh a lot more than ever before, I appreciate all the little things and i know that sounds corny but its true.

I'm an optimist, and negative thoughts are not something i've really had to deal with at any time through out my life, i've just always seen the positive in everything, so even when everything goes bad again and i'm battling to get out of it, you'll find me laughing and telling jokes.

I've definitely had too many over the top giggling episodes to count, i'd like to think it's personality but I suspect its got more to do with where the lesions are in my brain lol. The constant feeling that time is running out, is also probably driving this to some degree, and i don't mean it in a morbid sense but more........appreciate what you have today, because you don't know if you'll get to keep it.

Depression is a beast to get out of if it takes hold, don't battle this beast alone, speak up, speak loud and do it sooner rather than later!

Hugs.........JJ
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That's really great.

No, it doesn't sound corny, at all.

As far as depression, I'm going through the grieving process. And it is a process that takes time.

Sheila
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Yes I have found myself to be very emotional at times.  Can cry at the drop of a hat.  while I have more patience with myself I do not have any patience with others!  

Stress is a huge part of my life and I think that is a factor -  I was off this weekend -  the first one since February and the last till August and found myself in a much better mood, even though I worked around the house harder than I do at my job.  Also found that my legs are  in better shape today and walking is much easier -  Oh to be able to quit the part time job and only work 5 days a week!  SIGH!

Tracy
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Tracy,

I feel the same way-very little patience. And I am very emotional.

Stress is also a very huge part of my life, and I agree, it is a factor. You work a lot of hours. So, that makes it even harder.

Sheila
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Well my doctor is blaming my stress for the lesions... I know that stress can worsens MS but I dont think it can cause lesions :(

i am on the verge of giving up .. i dont want to know whats wrong anymore :(
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I have MS "without visible lesions", so I can't address stress related to lesions, but  we all have stress in our lives.....some of us, more than others.
And I feel your doctor isn't taking you seriously.

And I agree with you, stress does worsen MS.

I've had MS exacerbations after stress.

When I told my MS Specialist in February, that I was depressed, felt overwhelmed, she offered me a prescription for an anti-depressant, and as she wrote the 'script, she smiled and said, "And your problems are bigger than everyone else's?"

I feel the same way.....like giving up. I developed Lymphocytic colitis, I'm down to 74#s, and my MS Lifelines nurse came out a few weeks ago, and I have limited areas of fat that I am allowed to inject.

So, I have two weeks left of the new Rebidose injector, and I don't know if I will continue. I told Accredo to put my refills on hold, until I see my MS Specialist at the end of June.

I think I'm sorry I was ever diagnosed.
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I too feel like I over react when everything isn't perfecto at home.  I have 3 kids ages 14, 11, and 9.  So that can be stressful! Lol. And yes....our poor husbands take a brunt at times.  I really wish I could be more like you JJ!  I try my best to. I think positively but just get angry or worry very easily.  

I taked with the neuro about this wondering if I should ake an antidepressant to help calm me down some.  I'm afraid all this stress I put on myself is causing my MS to worsen.  I ant be good :(. I just don't want to have to take the medicine because I know I'm not depressed...just a little OCD. Lol

This disease bites and hate that my family has to suffer too.

Jeny
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Jeny,

Thank you for responding to my question. I wondered if I was the only one.

I used to be like JJ-but too much has happened since my diagnosis. I live in constant nerve pain. I can't leave the house. And now, with the latest diagnosis of Lymphocytic colitis, and the fact that it is chronic, it's hard to feel upbeat.

I don't want an anti-depressant, because I already take too many medications.

I agree-MS really does bite. It's very hard on families.

Sheila
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I'm sorry you are struggling.  Don't be afraid to reach out to friends and family.  Maybe they can help get you out .  Just being out with friends can do wonders!  Don't let this MS get you down.  We are strong and this disease is a roller coaster.  I'm sure you will get better again!  You can vent anytime.....we are your friends too :)

))HUGS((
Jeny
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please check your settings on messages. I tried to respond to your pm but it rejected my words, saying you aren't accepting messages.  :-(

If  can be hard on our partners because they want to fix us, not so much that our being short is what gets to them.  I do find at times I am less toelrant than others - perhaps I often feel like I am wasting time while the clock is ticking.  

Laura


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Hi, Laura.

Thanks. I didn't realize I hadn't checked accept messages.

I agree, it is hard on our partners. I know Rich hates to see me in so much pain. But, he also loses patience with me, lately, because I am "reacting" to things. I'm working on thinking through what is bothering me, so that I can avoid reacting.

I feel, like life is going on without me. I hate it. I used to be so active, and now, the nerve pain is so bad, that I am forced to spend my life, laying down.

Sheila

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Thank you, Jeny. Afraid I don't have any family. And I can't get out with friends right now. Hopefully, when this Lymphocytic colitis is put into remission, I will be able to go out again.

The MS hasn't really gotten me down. I was actually very thankful to get my diagnosis. It took 6 long years, and my MS Specialist was able to determine, from my symptoms, that I'd actually had MS since at least, '98.

Right now, what is getting me down, is that I developed Lymphocytic colitis, and it is making the nerve pain in my spine, unbearable.

I've lost weight again-back down to 74#s, so I have only a few areas left to do my Rebif injections.

I'm very thankful for my friends in this forum.

It seems like only people coping with illness, really understand.

(((HUGS)))
  Sheila
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Here's where I becoming a pain in the b-hind, to me stress is a generic term, it means different things to different people, and what one person finds stressful another will thrive on. Life in general has been dissected and analysed and just like 'fatigue' is over used by everyone and their pet hamster, well to me so is 'stress' over used.

Why is it stress and not being 'understandably' overwhelmed by a nasty personal bucket load of reality. If your personal bucket is already full, well it makes sense that the next little thing will make it over flow. Lets not forget about having a chronic medical condition, that makes the responsibilities of normal life just that much harder to do.

I do not see many aspects of life as stressful, that's just the way it is, its just life! I must be one of the people that thrives on chaos, because I dont get it, i honestly do not understand why people blame outside elements and not the internal.

To outsiders looking into my life, I'm the daughter of a elderly mother with bipolar, sister of 2 brothers with Asperger's, the mother of two very different kids, my son is a scarily gifted teen and an Aspie, my daughter is very successful in her chosen field, struggled academically and is also an Aspie. I've always worked in pressure cooker environments, and loved ever moment i volunteered or worked in schools helping kids with special needs and behavioural issues.

People automatically assume my life must be a stress-fest nightmare, dysfunctional family etc etc but it so isn't anything like that, it never has been but people assume my life has to be an emotional roller coaster and unbelievably stressful because of the family I have and I just don't get why. Seriously, if i had a dollar for every time someone said to me "I don't know how you do it?!" and its never said with anything other than confused pitty, lol its been said a thousand times and it still shocks the hell out of me.      

I really dont know if we should be blaming the external aspects of life and putting into the stress box, when the other alternative is the internal you, what your medically dealing with and what's going on inside your head space because of it. Are we sometimes just being too hard on our selves, doing to much, expecting too much etc........when our buckets are full?

HUGS...........JJ  

ps if you didn't already know it, i sometimes ramble on and on and on :o)    
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Well, let's see....

I have P.T. in Nov. & Dec. Tech told me it was covered 2 treatments a week for 6 weeks. Didn't tell me that I couldn't make up missed treatments due to tests, doctor appts. until the 7th treatment.

Treatment was inconsistent, because she had another Tech do my treatments, and didn't show her how she was doing my treatments, so, on those days-no benefit from the treatment.

Hospital billing dept. mis-filed 15 claims, dating back to Sept. '12.

They admitted they filed my therapy with the wrong place. When they filed it with the correct place, it turns out that it "is out of network", so.....we are getting hit with a huge medical bill, that we simply can't afford.

"In network" my P.T would have been 100% covered.

Billing supervisor said it doesn't matter that my Tech told me my P.T. was covered.

Two weeks ago, they began refiling claims that had already been filed, and paid.

Billing supervisors response was "Someone got over-zealous".

Now, they are submitting claims for things I didn't even have done. Billing supervisors response? "We submit it as it is coded".

They are now filing more claims with the wrong place.

My husband is retired, we live on a fixed income.

So, this is STRESSFUL on both of us.

There is stress in life, and to suggest that we are blaming external aspects of life and putting it into the stress box is demeaning to anyone that states they feel overwhelmed, stressed.



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MS is different to everyone and with that said, I believe everyone's ability to handle stress is different too.  We are all unique individuals.  What's important is that we do our best with what we are dealt and pray that each and every day holds new promises for us.  

It's great that you can handle stress JJ.......wish I was designed to never over react or be stressed.  It would be like hitting the lottery for me if so!   For the majority of us some things will just get to us and that's ok.....it's life right?  We will deal with it and hopefully overcome it!

Jeny
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Jeny,

You've stated that very well. MS affects each of us differently.

For years, I was an Extraordinary Minister of the Eucharist. Served at weekday morning masses, 3 days a week, & two masses on Sundays

Scheduled the Altar Servers, Lectors, etc. Held Communion Services, when my former Pastor was away, and being a Missionary Priest, he was away, most of the summers.

I was in the Sacristy by 7:15 every morning.

I served at more funerals than I want to remember.

I worked all of the Funeral Luncheons at our church. Spending 6-8 hours on my feet. Worked our church's Fish Fry, every Friday in Lent, and the 1st Friday of every month.

I buried both my parents, my Dad in '97 & my Mom, 9 months later, in '98, after years of serious illesses.

I thank God I was still healthy enough to take care of them.

Today, my MS has progressed to the point, that I no longer am able to leave the house, and getting ready for doctor appts. causes me so much nerve pain, that my husband has to use a Homopedic massager on my spine, tush, thighs, just so that I can get in the car.

Yes, it's life. And it's ok if we have days when we just can't deal with the stress that life throws at us.

And until we walk in anothers shoes, it's impossible to understand, how their MS has affected them.

Sheila
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Um sigh, shocked at the reaction and I can only assume that I have "again" not been communicating very well. I have visual/cognitive/communication issues, that can make expressing my self difficult both verbally or in written form. I do try very hard to catch it, I spent hours (late last night) writing and re-writing because I knew it wasn't coming out quite right.......I should not assume people will always keep in mind who I am and remember the communication issues I deal with. My problems not yours, my fault not yours, my responsibility not yours!

My intention was to be supportive (!!) but at the same time empathetically thought provoking, I still see that in what I wrote, so I feel both confused and saddened that i've been interpreted in any negative way.

" 'understandably' overwhelmed by a nasty personal bucket load of reality. If your personal bucket is already full, well it makes sense that the next little thing will make it over flow. Lets not forget about having a chronic medical condition, that makes the responsibilities of normal life just that much harder to do. "

"........alternative is the internal you, what your medically dealing with and what's going on inside your head space because of it. Are we sometimes just being too hard on our selves, doing to much, expecting too much etc........when our buckets are full?"

I wasn't intending to imply that I was different (?) because I'm definitely not, I don't think i react to stress any differently to anyone else. Its just that what I find stressful, you might not - what you find stressful, I might not!

I know what makes me feel stress, in those moments I am calm, some say i'm too calm because all my emotions are 'absent', I think its more from learned self protection. With each additional 'moment' my personal bucket of reality keeps on steadily filling, and when it over flows, I like anyone else 'understandably' fall apart.

I am sorry if i've given anyone a negative impression than what i thought, never my intent and not how I am but its time to take a break before my reality intrudes on others once again.

Take care of your selves........JJ
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Don't sweat it JJ, it's very difficult, if not impossible to always word things in a way that people will take exactly the meaning you are trying to give something, as everyone has very different "frames of reference".

Anyway, back to the topic at hand.

I think how MS impacts someone's mood/thinking etc can sometimes depend on where in the MS journey they are currently sitting.  How I see things versus someone who has had it years will most probably be very different.

As for my mood, being relatively newly diagnosed, I'm still at the feeling really ripped off stage and my mood/thinking, at times, very much reflects this.  I still can't quite believe this has landed in my lap and it's now my 'new' reality.  

Since this horrible thing reared it's head I've noticed that I am much quicker to get angry and have far less tolerance than I used to have.   It doesn't seem to matter how hard I try to stay calm, it just doesn't happen.  Maybe with a bit more time things will improve??

Poppy
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Thank you poppy, I cant tell you how much i needed someone to reach out to me with some snippet of support and understanding! Thank you!

Today I wept with the sadness of knowing I have no choice but to accept I am loosing the ability to connect to others, take away my ability to speak, to write and i'm but a shell of what i am inside, an observer and not as i want and need to be. I am kicking and screaming and hanging on with my teeth gritted because it is the one thing, the only thing I can't cope with, isolation isn't where I can go, yet I am and I can't stop it, it just is and I have no choice but to accept and it su_cks beyond words!

I need a bigger bucket!

Look after your selves...........JJ
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I understand what you a saying.  I too sometimes don't express in words what I actually want to say!  Also when we write or text communication can be interpreted very differently than it was intended.   Don't let this get you down.   I'd say this is just an example how MS affects others.  

((HUGS))
Jeny
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JJ-I struggle, as well, with finding the right words to express myself. It's extremely frustrating when I can't 'think' or I can't find a word.

But don't allow yourself to become isolated because of it.

I have to admit, I was surprised to read your post, because in your 1st post, you made it sound like you've got it all together.

MS affects each of us so differently. But, if you are like me, and battling more than one auto-immune disease, (I'm on #4) it is overwhelming.

I know that my life will never be the same again. And I miss my old life.

I hit 60 this year, (My profile picture is of me at 59 with my sweet Kia, whom I miss so very much. She and Sydney kept me from feeling isolated, when things progressed to the point of not being able to go out. I miss both my sweet girls so much.)

I 'think' what you refer to as needing a "bigger bucket" may be what many of us consider feeling stressed. Sometimes, life can just be overwhelming, and we want to be the strong people we were before.

The hardest thing for me has been learning to depend on my husband.

When I became really sick, in '05, I ended up in bed, for two years with nerve pain in my spine so severe, that he had to pack me in pillows at night, so that I wouldn't move. Not an easy thing, for an independent strong woman.

Now, here we are, married 39 years, and I'm back with that same nerve pain.

It isn't the retirement he deserved.

Hang in there......

(((HUGS)))
   Sheila






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I do in the main have it together, for me the physical has already isolated me from the world around me but its easier for me to laugh about, lol i'm a bouncing human string puppet and my brain drops me for the stupidest things, [blush] even intimacy can be hilarious, trust me on that one lol

In the physical world, my verbal communication is nothing like it use to be, its more than using the wrong word, loosing my nouns or other words etc. I have a lot of difficulty actually speaking. I slur and stutter or stick on a sound and the words do not always come out. Which can seriously be a pain when trying to have a conversation, and being a talk-a-holic to me not being able to talk, is isolating.

Add, my written communication issues which is basically cognitive and visual (double) and it makes communicating by writing not as simplistic as it use to be, (lol what seems like a life time ago) i use to write a lot, for both personal or work commitments but now it often takes me hours to create a simple post and it does isolate me even more when its playing up.

But wait there's more - no steak knives for me lol actually that's basically it thats relevant, the physical, the verbal and the written and when combined or even separately, it adds up to being isolated by circumstance and not by choice. I am an optimist so thinking about what i've lost isn't something i tend to do, and its hard for me to even think of a negative future.

I can't change the here and now, so it doesn't upset me or even frustrate me,  i still believe the next chapter of my book hasn't been written and i still have choices in my tomorrows. Don't laugh (or do but share) I still feel lucky, and being an optimist I could write pages and pages of why i am lucky but i'd struggle to come up with negatives because my brain honestly doesn't work that way. To me thats just one more reason why i should feel lucky but the biggest one, is that no matter what is happening now or tomorrow, i will still always be little old me and i'm going to hang onto that!

Hugs to all.......JJ        
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JJ-so, your MS hasn't changed your mood, thinking, negatively.

This was the point of my thread, to learn from other members, if, and how MS has affected their mood, thinking, negatively. How stress affects them.
And I respectfully disagree, I don't believe that the words stress and fatigue are over-used. At least, not my me.

At the age of 60, and with the progression of my MS, I know that I don't  have  many choices in my tomorrows. I accept it.

It appears now, that I have lost too much weight, to do my Rebif injections.
And my husbands insurance doesn't cover the orals.

I watched my 2nd cousin, live with MS for 18 years, and die from it, in 2008.
He lived his life, in constant pain, the same way I live my life.

In what way, has the physical part of MS, isolated you?

For me, the nerve pain has returned with a vengeance, and I am unable to sit up for more than short periods of time. And because of the Lymphocytic colitis, pain meds are out of the question.

Perhaps I should have stated my question formy thread, as "Has MS Changed Your Mood, Thinking, Negatively, etc?" because that is what I wanted to learn from other members.



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I have taken a break from this forum for about a month but I am happy to return. This is an excellent thread. Thanks for bringing up this topic.

MS has definately changed my mood, or more accurately disability has changed me. I suffer from mild depression. At times  I feel sad, hopeless, useless and frustrated.

I cry often and am easily frustrated. I am always tired and prone to anxiety.

I work really hard to work out a lot which really helps my physical and emotional self. But the bottom line is that I am not the same person I use to be. :(

Deb
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No to negatives, and if i'm not confused by what you mean, as I mentioned before "i've always been very calm and tolerant and because i've always laughed a lot, i'd of said i was content and happy but after my big bang of 09, i've become even more so. I laugh a lot more than ever before, I appreciate all the little things and i know that sounds corny but its true."

I honestly can't answer with confidence or sicsincly (sp) if its changed my 'thinking' for me that's too open ended, but if you mean change my way of thinking about my self, then i'd have to say not really. I still like my self and have no major changes to how I still see my self as being, but my priorities for my self are different. I've always been independent and self driven, and if anything i am even more driven now, though its more about needs than wants.

My comment "to me stress is a generic term, it means different things to different people, and what one person finds stressful another will thrive on. Life in general has been dissected and analysed and just like 'fatigue' is over used by everyone and their pet hamster, well to me so is 'stress' over used."

I was meaning by the general public, people living normal lives and not those who know exactly what they are because they experience the true definition of fatigue or stress. People in general, use fatigue or stress for normal living but they don't really know what it's like to live with it, both have become commonly used or everyday terms and from my perspective, the over use is degrading them.    

I walk like a bouncing string puppet, which is physically exhausting and I fall over a lot, with my eye sight as it is, driving is not such a good idea, so getting out isn't easy unless I have help to get where I want to go and someone to help me stay on my feet and when necessary, do the communicating for me. A small outing can total me for days, popping down the shops for a bit of retail therapy is not on the cards any more (pitty), so the physical has inhibited my freedom.

Overall, what's changed mood wise for me is basically what I always had, but more of it, if that makes any sense.

Chronic pain is one of the hardest things anyone has to deal with, isn't there anything they can do for you?      

Take care..........JJ    
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My mood/personality is definitely been affected by ms. I have less patience and am irritible and my mood is often low. Some of this is due to being in pain etc though...
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Hi, Deb.

I was away from the forum quite awhile.

Thank you for responding.

I agree, it is the disability caused by MS, that has changed my mood, thinking, etc.

I'm sorry MS has affected you in the same ways.

Sometimes my MS fatigue is so great, that I sleep for 18 hours a day, for a week.

Right now though, the nerve pain allows me very little sleep.

And yes, I do feel sad, very useless, as I watch my husband manage everything, the housework, the cooking, the property maintenance.

My husband and I have been trying to talk through a lot of what upsets me, but we both realize, so many things are out of our control.

I'm not the same person either, and we both miss the old me. (:

Sheila
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Hi, Zoe.

Thank you for responding.

It appears that MS affects many of our moods/personalities.

I feel I am the same way, I am irritable, less patient, and I feel it is due to my high pain level.

Sheila
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When I was finally diagnosed, I was so grateful, so relieved to have the diagnosis. And I was doing pretty well for quite awhile.

But I wasn't "aware" that I was becoming over-sensitive. It wasn't until after a situation had occurred, that I would look back, and feel I didn't handle it the way I would have before.

No, I didn't mean the way we think about ourselves, just the way we think, in the sense, that they can't concentrate, as well, or unable to verbilize what they need from others, etc.

Although, I have said, and I will say it again, I don't like the MS me. Because I can no longer do the things I did before.

OK, now I understand what you mean about the words "stress" & "fatigue" being over-used. I agree, the general public, healthy people may tend to over-use those words.

For me, fatigue means an MS exacerbation that causes me to need 18 hours of sleep for days.

And stress, well, in that sense, there is so much negative happening in my life, that I can't deal with it, because I can't 'think'. I can't remember details.
So, my husband has had to take over even more.

My MS Specialist told my husband & I, that stress makes MS worse.

I used to be able to handle everything, without giving it a thought.

(Although, the death of my parents 9 months apart, left me emotionally drained for a long time.) They both suffered serious, long-term illnesses, but that didn't make losing them any easier.

JJ-like you, retail therapy is not possible for me, anymore either. I miss going out with friends. So, that depresses me, when my friends e-mail me and tell me all about what they have done that day.

Right now, I am stuck living with the pain, because I am not allowed to take any pain meds due to the Lymphocytic colitis. The meds make it worse.





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Oh I wish I had the magic pill for you!  It's not right to have to be in constant pain and not treated.  I will keep you in my thoughts and prayers that phase passes quickly like before.  

I have been wondering about stress making our MS worse.  Do you think anxiety mess help with that?  I've contemplated taking them for a long time.  

I will be startingTecfidera this week and hope that things get better.....therefore less stress lol.  I admit I do have the type of personality that gets stressed easily over little things.  I try real hard not to but just can't stop it at times.  It's one of the things I'd love to change about me!  

I get in little arguments with my hubby because I have trouble explaining or discussing things and it doesn't come out of my mouth right.  I guess I need to have a talk with him and explain it may be my MS.  This is new to us and I don't think he truly understands what my future holds for us.   I pray and hope he's up for it.  That's one of my biggest fears.  We are only 40.  Does he really want to deal with this for the ret of his life?  It's scares me :(

Jeny
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Oh Ssheila, I really want to reach through my iPad and give you a great big hug!
Everything you just said to me could have come right out of my mouth!

It really is comforting to know someone can totally relate, although I am sorry you feel this way too. Please feel free to private message me any time you want to talk. :)

(((more hugs)))
Deb
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Jeny,

Thank you so much.  I appreciate prayers, more than I can put into words.
I feel, if my Lymphocytic colitis could be put into remission, the nerve pain would lessen.

I am taking the medications, since December, that my G.I. Doc prescribed, and eating so very carefully.

Cream of Rice made with water, (no dairy allowed-due to the casein). Plain white toast for lunch, and again, my husband can only buy one type of bread from Panera. White rice for dinner. A banana for an evening snack.

Yes, since stress worsens our MS, I believe that anxiety would also worsen it.

Oh, I hope you do well on the Tecfidera! I've read it has the least amount of side effects.

I feel, that when we already have the type of personality that doesn't handle stress well, MS makes it so much harder.

You are just like me. I don't always know either, what is upsetting me, and that has been very difficult for my husband.

I think having a talk with your husband, really would help him, understand that your MS is affecting you.

I believe, your husband will walk the path of MS with you. After all, in our wedding vows, we said, "In sickness, and in health".

So, don't be afraid he isn't up for it.

Maybe you can both find support groups. Sometimes, talking with people going through the same thing, is very helpful. He may feel less alone.

Sheila

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Hi, Deb.

Thank you so much! Consider yourself 'cyber' hugged!

I'm so glad that found comfort in knowing that other people, like me, feel the same way.

I am so sorry that MS has affected you the same way.

(((HUGS)))
Sheila

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Thanks for your advice.  Im sure we will make it.  He will learn along the way as I do.   He doesn't worry and likes to deal with issues when they happen which is good.  He keeps me grounded lol.  

I'm sure I will have to watch what I eat for awhile with the Tecfidera.  

It's great having all of you to lean on and ask for advice.  Finding this site was the best thing I did when I found out about my MS.  Thanks :)

Jeny
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You're so welcome, Jeny. Your husband, sounds a lot like mine. Rich doesn't worry about the things that worry me. He always tells me that things will work out.

He also keeps me grounded.

Please don't worry too much about watching what you eat when you start Tecfidera. I learned that MS can cause great weight loss, at some point.

Before I was even diagnosed, I dropped from 95#s to 76#s in 5 months.

I was able to regain some of the weight, once I began Rebif and started feeling better. But then I developed Lymphocytic colitis, and my weight is back down to 74#s.

I agree with you. This site is great-full of wonderful people, always willing to offer advice.

I joined before I was diagnosed.

I left for awhile. But I realized, I still needed my friends here, because people in LinboLand and MSer's are truly the only people that really understand, because we are all walking the same walk.

Sheila
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Poppy,

I agree with what you said about how MS affects people, depending on their stage of MS.

When I was 1st diagnosed, I didn't realize that I'd had MS for many years, so it had already done so much damage.

I'm very sorry that you have been diagnosed with MS.

It seems, as my MS progresses, my ability to stay calm, rational, has lessened.

I hope very much, that you were diagnosed very early in the disease. I feel, early diagnosis, makes a huge difference.

Sheila



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Oh sorry, yes cognitively i've changed, cognitive testing shows significant changes but i really didn't need the testing to know that my mind wasn't working as it once did. When i'm dealing with a relapse it's quite obvious and i have a return of specific dysfunctions but still different than pseudo's, with pseudo's I know its more to do with mental and or physical fatigue.

Wow this is hard to explain... slow, foggy, concentrating really hard and i still can't quite follow, forgetting 'new' information, short term memory not automatic. Distracted, Spelling and visual memory off, how to do, how to start, what to say etc is all off. Does that make any sense? Pseudo's exaggerate it all and just like resting/sleeping helps recharge the physical, it does the same with the cognitive, though its never not still there to some degree.

The cognitive changes from a relapse though are more specific, i loose all nouns, and i do mean literally and specifically just the nouns, quite weird and even with out the verbal issues, it makes having a conversation harder. A couple of years ago i experienced for the first time, very obvious short term memory dysfunction, specifically recognised simply because i've been a book worm since i could walk, so what happened just clearly stood out. I could never read a book twice, never because a few paragraphs into 'any' book i'd read prior, the entire book would come back to me, it was a life long pet peeve of mine. oh and my visual memory use to be the same, if i'd seen anything, i could tell you where to find it, be it an object, information etc no matter how long a time frame, it was very very handy to have with my Aspie kids.

One relapse though, my communication issues was making it too difficult to talk at all, so I did my usual and was reading to keep from loosing the plot. I'd just finished reading a book and i couldn't remember anything about it, struggling to come up with anything beyond very general terms, nothing informative.

I knew what was happening (new experience and the opposite of my normal) because of working with children with disabilities and my understanding of brain plasticity, I picked that book back up and read it again, i kept re-reading that book until i could hold onto something, it took me 5 times.  

It does still improve,lapse,improve etc but I never did get back to what it use to be, from my perspective at the time my short term memory fried, any improvement from where i'd gone, was a huge improvement and life changing to me. Theoretically, i could say that I am loosing my mind 'but' with everything I know, and everything I believe in.......it is all still there, just slower to access and maybe harder to get out but it is still there and thats all that matters to me.

golly i have taken all day to write this, i hope it made sense and did go towards getting some answers to your questions. If not please accept my sincere apology for any confusion I may cause, I promise it is never my intent!

Hugs.......JJ    
    
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You have written so much of exactly what I feel.

I have cognitive issues, as well. Very slow thinking, foggy, hard to concentrate. And I forget new information, almost immediately.

You make perfect sense, because I am dealing with the same issues.

For about a year, I have been waking at 3:00-4:00 in the morning, very hot. Unable to go back to sleep. Then, in the morning, I am very tired. So, I feel it contributes to my inability to think, concentrate.

Like you, I was an avid book reader, since I learned to read. Now, I get distracted. So, I force myself, to read, until I comprehend what I am reading.

Often, I  can't find words, when I am having a conversation.  When I was still able to go out, I had to look at the dashboard, and say, "Blue means cool, read means heat", to turn on the A/C.  Whereas before, I "knew".

I agree, everything is still in our minds, it is just harder to access.

Thank you, JJ, your explanation in your post were exactly what I was hoping to find. I needed to know, if there were people going through, what I am going through.

No apology necessary....we are all walking this MS path, and if we can't find empathy here, where can we find it?

Hugs,
Sheila
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