Do you ever feel like you are letting your family down?

[figuerpa]

Does anyone ever feel like they are letting their family down? Being a burden?

I have been in this slump because I can't do all the things I once did. It is harder on me and sometimes I feel like my family thinks I am just using it as an excuse.

I can't go out in 110 (heat index) weather to do things, if i do I feel like I am going to colapse. I can't walk for very long or my leg gives out.

I just feel like I am letting them down. We use to do so many things together and now sometimes I feel they just don't understand what I am going through.

Granted I have not be diagnosed with MS as of yet, I still have symptoms that prevent me from doing the things I once did. My self asteem has gone to the dogs because of it, I feel useless and sometimes worthless. I have a feeling that I am falling into a deep depression and I am going to push everyone out of my life, then I will have no one.

I try to stay positive and I do as much as I can before I feel bad but once I feel bad it is either lay down or fall down. I can not wait for winter to get here so I can get out and do more. The cold weather is good to me, guess we will have to do our outdoor fun in the winter, especially with a summer like we have had this year.

See just writing this has made me start crying.

Paula

[figuerpa]

Thank you guys,

I think I have worked my way out of my funk I was in. I sat down with my son and explained to him everything that is going on. I had him watch some videos on you tube and now he is doing everything he can to make light of the situation.

We were walking into the store the other day and said "mom, haha I finally walk faster than you, ha ha" made me laugh and I didn't take it the wrong way.

The other night when I was in so much pain, I couldn't even walk, we were sitting in the living room and he knew I was in pain. I was laying on the sofa and he went into my bedroom and pulled my mattress into the living room so I wouldn't have to try to walk to bed.


The next morning he took the mattress back to my room and cleaned the livingroom. I guess I really shouldn't hide the way I am feeling cause how is he going to know when I am ok and when I am not so that he can help me.

I truly appreciate everyones input on this topic. I think talking on here has helped me a lot also.

I am working through my issues with the help of my family, now that they actually understand and know when I am not good. It really is better to let them know so that they understand.

Thank you everyone
Paula

[mamiJ]

Yes, I feel this way also
.
I do not have a dx either,but I am far from being the person I used to be.

  My husband actually tells me often that he is tired of it and I need to get it together

He says that he knows I'm tired,but so is he. (He has no idea)

You mentioned your children feeling let down...well, I think my 4 year old is the most understanding person of all.

All you can do is remind yourself that this is not a choice that you made,so it is not your fault.

Take care

[supermum_ms]

Hmmmm, i've been thinking how I would answer, since you first posted the question, its not that easy for me to let my self go there. I know i'm not the person i use to be, cant do what i use to do but i have to remember everything I am. I am not what I do, I am more than that, I do feel that I am just as valuable a member of my family as anyone.

I'm the family cameleon (and comedian lol) I've always had to adapt, maybe i'm just so use to preempting my families needs, because they do have special needs, that its become second nature. I really dont know why I am the way I am, I tend to believe its because I have always felt blessed, lucky to have the life I have, I really can think of others who are so much worse off than me.

I feel a bit guilty for being this way, I know I shouldn't and it's silly, i've had enough to get depressed about over the years but i always been able to get my head together in a day or two, still dont really understand why but thats always been me. Having the family I do, I'm always looking for teachable moments, i'm now a teachable moment.

Not something I ever planned but lets face it, i am teaching my children to be a strong, to never give up, to face the unknown, that you are more than a physical being. I am also teaching them to question, to have compassion, be less selfish and be tolerant of differences no matter what they maybe. Funny but i really am teaching them to not take people for granted and that when someone in our family falls, we will hold them up whilst they are finding their feet.

I know i see thinks differently, I just hope I always will be the eternal optimist!

Cheers.......JJ  

[Guitar_grrrl]

Ugh!  Yes, yes, and yes!

My own problem is that I keep pushing the envelope with my energy, and I don't realize I'm spent until it's too late!  Luckily, my family is very supportive.

I do go into these, deep, dark, bottom of the well blues.  I come up for air, now and then, but it doesn't always last.  When things get really bad, I hang out with my therapist for a while.  I've learned not to make life changing decisions when I'm deep in the well, and to keep my mouth in check.  I ask myself before I speak - "is it true? is it kind? is it necessary?"

[doublevision1]

One of the tough challenges of dealing with a chronic illness is managing expectations vs reality.  It's not easy to let go of the way things used to be, pre-illness, especially if previously you were busy and active and can no longer keep up that pace; and if you previously were able to make and keep lots of commitments that are no longer possible to maintain.  It's sometimes a huge adjustment to make, letting go not just of the way things used to be, but letting go of future expectations you had for yourself and your life that may no longer feasible.  Not meaning to be trite, but it really is a grieving process.  For some, it takes time to adapt to one's changing circumstances.  Eventually it happens; it's human nature to adjust and adapt in order to survive.  For others, professional help may be useful, and actually pretty critical if depression is an issue.  I agree with the comments of others here about seeking help, and glad you mentioned you were going to talk to your PCP today.  How did that go for you?

I know this is easier said than done, but try not to be too hard on yourself for what you are no longer able to do.  But also know that it's not simply a matter of forcing yourself to think positive (I hate that expression...I guess I think negative, lol); remember that it's an adjustment process and that it's going to take some time getting used to your new and unwelcome circumstances.  Continue to reach out for support wherever you can get; that perhaps is most important of all.

BTW on the subject of depression, it's not uncommon for people dx'ed with a chronic illness to develop depression; the stats are even higher for MS specifically when compared against other chronic illnesses.  The theory is that depression in MS may not only or always be situational, in some patients it is the result of the impact of the MS disease process on the brain.  It can also result as a side effect from some of the medications used to treat MS and its symptoms.  Not to mention, as in your situation and many others here, the anxiety, fear, ambivalence and self-doubt that unsurprisingly occurs when the diagnostic process is prolonged with no answers in sight.  Whether this ultimately turns out to be MS, or something else, being in diagnostic limbo in and of itself can lead to depression.

[figuerpa]

I have had the problem of needing to take a step up on a curb and my leg didn't want to lift and I tripped...my daughter laughed till she cried cause this was before the other symptoms started. But it was funny as heck. I laughed pretty hard myself.

We will all get through this. somehow some way. This discussion group has been a godsend to me.


Paula

[Jokane]

I forget how to make a cup of tea sometimes and where i need to go for the milk. read an interesting thing here, that a guy wrote, said he sometimes lost his balance because he was on a step but forgot he wasn't on the flat ground!

. I wonder if anyone else has had the experience that they feel like a dwaff when they are wallking rather than their real size. It sounds very odd, but it has happened to be a few times.Its like Alice in wonderland when she drinks the potion that makes her big, then eats the cake that shrinks her.

Makes youo feel like you are going mad.lol

[figuerpa]

Its funny that you mention that you do not feel confident in driving. I had an experience a while back.

I was driving in Easgate (not that you know where that is lol) but anyway it was me and my 12 year old son (11 at the time) in the car. He asked if we could go to this store and I said sure.

Well first off I need you to know that I drive in eastgate all the time. I should be able to drive it with my eyes closed (not litterally lol) but on this day I was in a fog when I woke up but went out anyway and I got lost. I had no idea where I was or how to get to the store. My son had to tell me how to get there.

It happened to me one other time when I was driving somewhere that I had been to many times, I forgot how to get there. I had to call my daughter so she could tell me where to go.

That was the uttmost scariest thing that has ever happened to me. So now on days that I feel like I am in a fog I don't leave the house. Well sometime I do, but only for appointments and such and i have a gps now and put the address to where I am going before I leave even if I know how to get there.

Paula

[Jokane]

Hi, i totally know what you mean, my children are all grown up, but i got married 18 months ago and after several instances of not being able to do simple things like go wild garlic picking for fear of falling I felt useless.

I have not been dx'd yet but I have had several bouts of feeling like this i have told my husband how i feel and he is very supportive and reassuring , but just recalling it makes me want to cry. I'm lucky i don't really get pain but i'm always stumbling around and can't even get on a chair to change a light bulb. Or do stairs without a handrail.

I used to be very independent and confident but with my head full of marsh mallow i am not confident even driving now.

As some of the others have said, find activities you can do, and even explore things you havn't done before, go swimming for example even if you just float around to conserve energy.....

I'm battling with the problem and with my husbands help I am not giving up joining in just adapting what we do together.

[michelleislay]

paula----YES, YES and YES!!  and i've only been on this road a short amount of time.  

not only just my family, but my co-workers and friends too.

i bowed out of a committment to go to a cottage with a girlfriend and her two kids earlier this week for worry about the "fatigue" that usually hits around 3.  my friend was so wonderful and offered to let me have a nap/rest mid aft. but i'm not very good at taking these types of offers w/o guilt.  i knew i would have gone and pretended to be fine and suffered in the end.  so i just bowed out.

i can tell i'm letting my kids down by the way they have been acting out.  they have enough energy to raise up a hot air balloon and the lack of trips to the park is really getting to them.  you are not alone and i am absolutely sure that you can be proud of all of the efforts you do make everyday!

paula, good for you for talking about it all.  it is the first step in the right direction.  

know that we are always way harder on ourselves than anyone else is.  

do talk to your doc.  it's important to get all the help you need!!

keep beautiful!!  ;)

xoxo  michelle

[bairdy]

hi
and yes i too get like that all to often !!!!
i have not worked since christmas and they have now finished me due to ill health and can so ralate to all you are saying.
as i am on the same road to answers.
be strong and take care
regards bairdy

[figuerpa]

Thanks everyone for all your input. It is just nice knowing that I am not alone. It is just so hard for me to go from being a strong independant woman to being this.

The heat makes my pain worse, I try not to let anyone see the pain but sometimes it is overwhelming, so what's a person to do.

I have an appointment with my PCP tuesday. I think I will talk to him about how I have been feeling and see what he thinks.

I just feel bad because if I can't do it then they don't want to do it cause they say it isn't fair, but in all reality it isn't fair to them to have to turn their rentire lives around (upside down).

But I reall appreciate all the advice and support you have given me. I will fight through this as I do all the other stuff (putting it nicely) thrown my way.

I am hoping I will have some answers with this LP I just had. I seriously think the "not knowing" is the hardest part. I feel like if I had a diagnosis then at least I could let my family educate themselves and understand, but until that dx comes I am just stuck.

Thanks again everyone,

Paula

[michelleric]

I cant write too much write now, but just wanted to answer you question. YES. Lots of times. Right now in fact.  I had to leave my family vacation early due to pain. Not the type of summer vacation with my kids and husband I was imagining.

You are not alone,
Hugs to you,
Michelle

[steph74]

Yes, I feel that, too.  I have some severe pain and it gets a lot worse in the heat.  I generally don't let my girls know about the pain, but they saw me a crying fool two weeks ago because it hurt so much and I couldn't drive!  I called my husband on the phone, crying, for him to come get me and the girls because it hurt too much to drive them home 3 miles!!  

So, yes, I know what you mean.  But we are what we are.  I know my husband and his brothers don't feel let down by their mother because she couldn't do a lot of things because of her severe RA.  So maybe our kids don't really think that.  :)

[debtea]

I just wanted to let you know that you are not alone in feeling this way.  It seems that depression and MS go hand in hand!  Please don't beat yourself up.  I am sure that your family does not feel as let down as you think.  I am with everyone else in saying...Call the doc. for assistance if you get too low!  Sometimes we need a bit of help to overcome feeling this way.
Please know we are all here and understand what you are going through.
Feel better...
Debtea

[starryeyes1]

I completely understand what you're talking about. I fell into a deep depression right after my dx. I recall waking up one day and just feeling like giving up. I stopped eating and couldn't stop crying. I shut myself off from family and friends.

No one can understand what it is like to have MS unless they themselves have it..or even any incurable disease. What you are experiencing is awful, but normal. Don't beat yourself up.

Take care of yourself..don't let this depression get the best of you. Recognize it, and get help if you are getting "too low".
We are always around here for a sympathetic and understanding ear.

Take Care
Kristi

[missy72450]

Hello sweetie,

Everyone is so right. I have always been the one everyone comes too. The one that held up the columns to the porch so to speak. I do not have that strength any more. It took (and is still taking) alot out of me to let that go. Unfortunatley depression is very much a part of any disorder that causes this much fatigue.

I am with everyone else dont let that get the better of you, talk to you doc about it. And if it is MS. Life is not over it is just different. We all have to adjust to different things regardless of what our current medical status is.

You are not letting your family down, you are giving them the opportunity to grow into nurturing people.  And whenever you feel down remember Forrest Gump Life is like a box of chocolates, you never know what your gonna get.


We are here for you sister and will be so this is the place to vent and scream in capital letters if you need to. You are stronger than you think on the inside.

Love and Prayers,

Missy

[Lulu54]

Hi Paula, I see you are down the road from me - I'm in the Dayton area.  Or have I already told you that?  

Once you get some answers to what is wrong, it will be easier to work through this with your family.  In the meantime, I hope you really know that if you allow yourself to be pushed into doing things that are detrimental to your health, everyone will suffer.  You will be down for the count, and everyone else will be missing you.  It will be bad all around.

this summer has been brutal and we still have several more weeks to go....  stay close to that A/C.

Have you considered the indoor activites you could do ?  Instead of Kings Island, how about the Museums?  You have great ones.  Instead of time in the park, a matinee movie can be quite the treat.  We don't stop living because we have MS or whatever it is you have -- we just learn to live differentlly.

Everyone is right about the depression - don't let it go on too long.  Seek help if it continues because it isn't always possible to get out of that hole without a hand up.

be well, Lulu

[lovemy6monkeys]

((hugs)) Paula,

I have felt that too, especially with my youngest. With my 5 older kids, I would carry them all the time. My husband teases me because he said the kids don't leave my arms for at least 4 months, and that is pretty much the truth. Heck, most of them slept (in my arms) for their first 6-8 months! But, with my youngest, I had an incident where she slipped out of my arms and into her crib in the middle of the night when she was about 6 months old. After that I had to be careful how long I carried her around for. I've also had to rely on my older kids to help more. They do a lot of the straightening up most days. I've also asked my oldest to help with carrying the baby if I'm not feeling strong that day. He adores his baby sister, luckily. And he is also a wonderful help with lifting things, stuff like that. He is only 12 but he is already bigger and stronger than I am.

I have just been honest with the kids when I am not doing well and need help, or can't do something. They seem to understand pretty well. Though, my 5 year old was asking to go to Chuck E Cheese's (which is NOT my favorite place LOL) and when I said no, she very seriously said "Is it because of your MS stuff, Mama?" I had to laugh and tell her "No. It's just because Mama doesn't want to go to Chuck E Cheese!" :-)

((hugs)) and I hope you feel better, both physically and emotionally.
~Jess

[sllowe]

p.s. to answer your actual question, YES! all the time, found I was doing a lot of it to myself too - and at least that I try to control so I don't get down in the dumper

Who else?

[sllowe]

Aw, Hi Paula,

Don't cry - I hate to see anyone cry (but I soo get it). Yes, we totally understand. It's frustration, disappointment all wrapped into one big blubbering mess.

And, the pressure you put on yourself is by far probably worse than their biggest expectations.  

Lower the ones for yourself a little so you can feel some gratification in little bits of progress at a time. Do small stuff that requires little effort and be pleased w/yourself. Heck, tell us and we'll dote on you for it, lol

If it doesn't shake off w/all that we are gonna say to you (you know how we are, ha/ah), please do tell Dr. about sinking worthless feelings - depression is serious.

Nice to meet you, and feel better ((((((hugs)))))))
-Shell