I think a relapse is coming, and I really dont have time for this.

[michelleric]

Well, my legs have been giving lots of trouble the past few days.  I have really been trying to ignore it, and it will magically disappear.  Well, it is worsening and I am angry about it.  I just don't have the time or the energy for this.  I am still HUGELY thankful my face has been relatively stable and pretty pain-free since I had the steroids shots in my head, but...

I have just really decided I am NOT a fan of MS.  I am sick of the saying, I have MS, but MS doesn't have me.  I know, negative comment here, but really, that is always my exact thought.  My calves are so tight, it is if I am a bike rider with muscles of steel. ( I wish).  Although my hubby tried to massage my legs last night, 1st time ever. I was just/am is so much pain.  He couldn't believe the knots in them, although I only let him touch for about 30 seconds. Just too painful.

Anyway, it is a symptom he can "see" and "feel", and I think he might be understanding a bit more what it going on.  That is a GOOD thing, even though it comes from BAD.  I am also have really tight shoulders, neck etc. with numb tingling patches in lots of places.

I went to a wake today, hate those things. I hate seeing the dead.  I tried not to look, but to see my sister in law and her family, I had to get close to the casket.  Why do they do this?  The standing really did not help these spasms.  I tried to take some zanaflex during the day.  All it does is knocks me out, which isn't a bad thing if I didn't have my life to deal with.

Basically, this is just a whiny post, which I don't try to do anymore.  I had a MS person call me today, while I was "sleeping". I picked a time to deliver her bag, and I am sure she is thinking, who the heck is coming here?

I could hardly get down the stairs to get my calendar, and she heard me moaning on the way down. Oh well, that is it, and why I hate MS today.

Thanks for listening.

Michelle

[Sumanadevii]

You have never sounded bipolar to me.  You have always sounded like a wife and mother wanting to do more than your body will allow.  To me it is total frustration.  In other words, michelleric, you are trying to make your body do what it can't.  You don't want to hear the nasty words "wheelchair" or "electric scooter".  It is possible those things can help the pain level and allow you to do all you need for your family.  I know my pain level went down after giving in.  Most days I split it....My legs do the work until I can't.  I think you may find some freedom once you give yourself a break.  Not all MS patients run marathons. Using a wheelchair is not a crutch.   Think of it as pain medicine!!!

Sumana

[Lulu54]

M - I hope you are wrong.  take care, L

[figuerpa]

Michelle,

Everyone has given you wonderful advice and we all know where you are coming from. I have been spasming so much more in this cold weather so I am right there with you.

I don't think anyone likes this disease it is just something we have to learn to live with. Sometimes I wonder how I am suppose to live the rest of my life in pain, then I look at my kids and grandson and say to myself, that is how I will live.

Getting people to understand can be a very hard thing, I have just decided either you understand and believe me or you don't, I really don't care anymore, this is my life and my pain, numbness, tingling, spasms, forgetfullness and ecerything else, I know it is real and that is all that matters to me.


Maybe you should take a couple of days for just you, a pamper Michelle weekend or something, you are a very busy person and sometimes you need to stop and listen to your body :) I know easier said than done.

I hope you feel better and I am glad that the TN is at bay with the shots. Keep your head up this too shall pass.

{{{{{{{{{{HUGS}}}}}}}}}}
Paula

[Guitar_grrrl]

I wish I could offer something constructive.  I can only offer you cyber (((Hugs))).

Typing with an understanding nod...

[michelleric]

Also going to a wake/funeral is never good for me mentally. (probably not good for anyone, I know)  That also tends to bring me down to.   I have had my share fair of these in the last year, and getting a bit tired of them.

[michelleric]

Hey Sarah,

I guess I sound a bit bipolar.  I am just tired, and legs hurt, which makes me crabby.  I still don't like MS, I don't know if I ever will "accept" it fully when I feel bad.

Thinking about that woman does make me feel good.  I will visit her again soon, to get uplifted.  I am still happy in the mental sense overall, just when I physically don't feel well, I get down.  Plus I am not sleeping well for the last 2 days, and that changes my mood. I have never done well with a bit of sleep deprivation.

I wrote this post when I was exhausted.  I probably should not get on the forum when I am so tired.  It is almost like "drunk dialing", perhaps it is "exhausted typing".  yes, my moods can change with my physical self.  I get myself too run down, and then my body hits me over the head.  I need to learn to take it easier.  Easier said than done.

Well we will see how tomorrow goes, never know who will show up!

Moody Michelle

I didn't mean to leave the men out.  I just don't really "know" them except for Paster Dan.  Haven't seen him around lately, hope he is ok.

[Sparkysarah]

Hi Michelle

I just spent ten minutes writing to you and accidentally pressed the delete button so now have to try and remember what I had written!

I read this post before the one you wrote two days ago and was struck by the different moods you portrayed and they could have been written by two people.  I sensed you energy and enthusiasm on connecting and meeting a stranger with MS who deeply touched and inspired you.

Then in this post I felt you were desolated, fearful and frustrated. But is this not just the way MS is for many of us...and I am not saying this in a critical way but just to empathise with the frustration of no knowing how one day is going to be compared to the next. This is sooooooo frustrating and I really understood what you were saying. This week I thought I was also going into relapse as I had a blinding headache for 3 days, tummy pains and my legs went all heavy and tingly. I had to cancel going to a carol service and just rest. I always know when I am not so good as that fatigue just takes over and wipes me out.

So although I try and be positive and encouraging in my posts to others, I am also really able to understand the other emotions and feelings. The bottom line is that we all DO have MS and I am on the fighting side of trying not to let it have me but it is hard to get away from it sometimes and I have learnt to give into it and let it win sometimes by resting. I feel that this way I am being stronger and helping myself.  I think you are a very strong woman, who wants to just be there for her family and others and I admire this in you. It is OK to acknowledge sometimes that it is tough and I just want to say that I do feel we are all in this together and it helps to help each other.

Love and hugs

Sarah

PS There are also some great guys on this forum....and I feel they need to also be acknowledged for their input and support....

[Sarahsmom46]

These ladies gave you some really heartfelt feedback and I'm not sure what more I can add except to say that we are all in this together.  You are feeling poorly today while I feel like things are under control. But on those days when I don't feel well and you are doing well that you reach out and help and encourage me with a sympathetic "ear".  

I hope that whatever is happening with you legs will pass quickly and not turn into a relapse.  You are a busy lady with a lot of things you want to do.  Tell those pesky legs to get with the program already or else they are going to go into "time out".  Smilie!

Hang in there and if you need to whine, by all means do so, as you have many of us who will listen and even bring cheese to the party.  

Many Hugs,

Julie

[michelleric]

You are the greatest group of women here. I don't know what I would do if I didnt have this wonderful forum. Thank you.

Alex, everything you say is true, and I can relate to them all.  I know you have faced many many bumps in the road through your life time.  I admire you for being so positive and having a good attitude.  I know there are plenty of days where that is tough, but you are so strong in so many ways.

You inspire me. The double vision is new to me as well. I think it has been around a couple/few weeks.  I had NO idea how debilitating that can be.  I am thankful I only have it when I look in right gaze. I can manage that.  (gives me a new appreciation of the patients that come to the office with double vision. Oh the irony, I am trying to fix there double vision while I am having double vision...

Thanks Alex.  I love all the visuals I have of you with dear Polly and your horse.  You are wonderful.

JJ, I am going to think more positively, that yes, maybe this is not a relapse, just an "over did it" Today.  That would be great.  I slept a few hours last night, still having bad painful legs. so I had 2 bananas, and zanaflex.  (The bananas are my theory of low potassium , even though I had bloodwork recently that said all was normal.  I might eat a few a day. Can't hurt.  Thank you for giving me a different perspective.

Sumana,  I do believe you "know" me fairly well from the last few posts you wrote to me.  I am pretty sure you we shared the same life at one time.  Your posts are always seem to get right to the core of it.  I have had plenty of those walmart days the past couple years.  I seem to have a harder time coming out of them in a positive way.  I just really don't want to accept any of this MS nonsense sometimes. I am generally stubborn and hate the fact I really cannot control this at times.  

This is my own "stuff" my mother in law would say.  I know I should "get over it" already, and most days I do.  I do believe when I feel good, those are indeed the days I have no problem with having MS.  I do know that I am very lucky, things could be so so much worse.  I almost hate writing that, don't want to jinx myself here.

Thanks for all your support and strength here. Much appreciated,
Michelle

[Sumanadevii]

My only huge ...totally out of character...breakdown came during Christmas time six years ago.  I still had sons in college.  I still wanted my traditions.  I wanted to shop, bake, cook, wrap and enjoy everything.  I was trying to keep myself together when I finally realized, I couldn't.  The breakdown happened right in the Walmart parking lot just three days before Christmas.  I hadn't had the strength to walk long enough to shop even with my husband dropping me at the front door.  My husband held me so close to him offering to get a wheelchair.  He would have done anything to bring me back.  I must have cried an hour before getting myself together.

Yes, he went for the wheelchair.  I shopped until two in the morning.  He ordered foods from the deli for the holiday meals and added the few things I had prepared in advance.  I was determined not to let my "bad" back (coughs) upset the fun for my children.  (I wouldn't be diagnosed for another five years)

What I am trying to say is....it was my family that kept me trying harder and harder.  Once I accepted it was what it was, I found other ways to make sure my family had what they needed.  No, it wasn't their favorite foods.  Yes some of the gifts were just stupid.  We still laughed and sang and enjoyed each other.  Once you, michelleric, allow yourself to accept it is what it is......trust me, you will find other ways to care for that family that means so much to you.  I promise you!!  Your devotion will push you to find other ways.

My spirit and strength stands next to you.

Sumana

[supermum_ms]

Ahhhh michelle, could this possibly not be a relapse but a reminder that your doing a bit too much and your body is telling you to slow down? You cant go past the negative affects mortality brings to our minds when faced with a loved ones passing, its hard enough for anyone so give your self some loving and a little TLC for a while.

[[[[[[[[[[[[[[HUGS]]]]]]]]]]]]]]]

JJ

[HVAC]

Michelle I get it give yourself a break. You work hard in your job and as a wife and Mother.

MS is terribly annoying. When I had my diaphragm spasm in November which basically pulled all the connective tissue in my chest loose and I was bed ridden for a week. I was really sick of this disease. I have things to do!

The constant double vision is a drag. I have trouble driving, reading, doing day to day tasks. I went to see a friends artwork in a gallery and could not read the tags or even see the work well. Our bank and Library have gone all automated no humans to help and I can't cope. Nobody sees it so no one knows I have an issue. If I did not have Polly I could not navigate the world. With out her I charge through the world with my cane out at an angle daring people to bump into me, it is the only way I do not get mowed down.

Today when I went to get on the horse I had no strength all the sudden. I knocked the sturdy wooden mounting block over as I fell back off the horse on to the ground. I had spasms most of my ride because it was late in the day and I had not had my medication. Then I could not lift myself up out of the saddle to get off, my instructor had to help me.

I have bad headaches several times a week which I lose a whole day. My bowels are not working and I will not get into another specialist so I live with it.

I am in pain all the time now. I depression is manageable these days but boy can I sink fast. With PPMS I have no remissions.

Each of us has different manifestations of the BEAST. One frustration is those who do not have MS do not get it. Our families and friends and Doctors sometimes think we do not try, were lazy, or it is mind over matter.

Stress is never good, nor is fatigue. Energy is like money in the bank with MS when you spend it it is gone and you have to fill the coffers again. I am learning no matter what I am doing when I get tired I have to rest for as long as it takes. If that means bowing out that is too bad.

No one asks someone with Cancer to keep going when they are tired. When someone has a heart condition or diabetes no one thinks that person should do more than what is safe. Why do people not get MS? Mostly because it is misunderstood and not real. People still think it is a muscle thing with me and if you keep exercising you will be fine right?

I know a lot of people on the forum are hating this disease you should. However it is easier if you accept it is real and work with it the best you can.

Alex