Have MS-Sorry for my family. Suggestions?

[Shiela]

I was dxd with MS in Sept. 2011. I've had serious symptoms and exacerbations since that date with steady decline. Condition: Sometimes bed all day. Cane and sometimes wheelchair. Going upstairs on hands and feet. I can toilet and bath myself at present.

I have been so busy trying to digest and keep up with my own symptoms and doctors that I just realized that is all I talk about and my friends and family can not deal with this disease any more than I can. Although they want to help, at some point, they realized it's more than they can do emotionally and then I'm hurt when they back off. I realize now that I can not talk about my disease to anyone and need to somehow grieve alone. This is all new to me. I've always been a healthy person and so this step of the process is a little overwhelming as is all the other steps.

Can anyone please make suggestions, from a caregiver's viewpoint, how I can make things easier on those I love?

[RonPaulaD]

I don't really have any suggestions. I feel badly for what you're going through. I don't have many symptoms but I still just really talk to my husband about my ms because I'm sick of getting "advice" and uplifting stories about people with ms who look great and you can't even tell they have ms.

Paula

[gullatte]

It will get better

I'm sorry your going though this ms is so hard I've been dealing with it 8 years now and now I'm in your shoes all I do is pray morning and night and I've had to move back in with my x enlaws to help me with my 2 girls people don't understand .I could tell lots of ms things but the best way is to maybe get a ms nurse out there to explain if u can .I wish u the best and this is a start and if u have face book the ms Facebook Facebook is good.

[gullatte]

It will get better

I'm sorry your going though this ms is so hard I've been dealing with it 8 years now and now I'm in your shoes all I do is pray morning and night and I've had to move back in with my x enlaws to help me with my 2 girls people don't understand .I could tell lots of ms things but the best way is to maybe get a ms nurse out there to explain if u can .I wish u the best and this is a start and if u have face book the ms Facebook Facebook is good.

[Windwalker]

I think excessive talking about your condition is very normal given you were Dx. 6 months ago and have been having a rough time since.

Yeah, it's hard to keep up with everything when your going through what you are. IMO you should expect a little more from your family...how nice for them that they have realized so quickly that it's "more than they can handle emotionally"...sounds like a weak cop out.

It's been 6 months, what will they do at the one year point... put you on an ice flow and push you out to sea?
Because after all, they "can't handle it emotionally".
Quit making them the victims...your the sick one. You probably think your being noble...to me it comes across as misguided thinking. They should be asking what they can do to make your situation easier.
I wish you luck, it sounds like your going to need it.

A different view...

Although they want to help, at some point, they realized it's more than they can do emotionally and then I'm hurt when they back off.

Have they actually said they can't do this emotionally or is this something that you've assumed since they back off?

Give it some time and cut your family some slack as well. They need time to adjust to your diagnosis and your new challenges. Watching your spouse be diagnosed with MS and seeing their decline is very difficult. That being said, if they are not there to support you and help you, make sure that you are vocal about what kind of help you need. Sometimes, I am so unsure of how to help my dh that I back off. Communication is key and if talking about your ms helps you deal and accept it, tell your family how it helps you. I'm betting that as time goes on they will find it helps them too.

When my dh was first dx'd, I felt like our lives revolved around his ms. We ate, slept, and breathed it and it was miserable. I felt hopeless and exhausted from thinking about it all the time. Don't get me wrong, I still think about it all the time, but after almost 2 years, my thinking is different. It's more of a "how can I help him today" instead of a "oh my gosh how are we ever going to deal with this"!

I used to hate ready that saying "with time, it gets easier", but the truth is that it does. The challenges get harder but with time you and your family will be better equipped to handle them.

Teeker

[kif8skip]

My Bf has a recent diagnosis of MS and as his mate it was/is very hard to adjust to and know what the right things to do are...

As we research and learn more and deal with it (MS) more , I know more , and find better ways-- some days are bad and some good , but it is getting less overwhelming for us both - on most days anyway!

The suggestion about getting some local help from your MS society is a good idea for both you and your family....

[Wendy52203]

Don't let the disease control you.... You control it.

My father was diagnosed 1 with MS in 1990 ... I have been a shared caretaker with my mother and sister for years... PLease believe me that on the day my father was diagnosed with MS ...everyone was also. As a daughter.. I was furious ... But, when the dust settled (which took a little time... Because everyone deals with it differently) I saw my father as... My dad.

As children we are nurtured by our parents with the hope that one day we can repay them for all the love and support they gave us throughout the years. As I am sure that your children will do the same... I love my father and wouldn't think of being anywhere at anytime but to support him as he has in my life. Your children will come around... And as for the guilt.... You have enough on your Plate ...

So, don't hide your dx ..but, talk about it .. Become friends with it and embrace what you have ... Because once you've allowed it to control you ... Then it wins ... It's your body... Mind .. And soul .... The mind is a powerful thing ... And once you've accepted it... And laughed in its face... Then your family Will too. I know you are saying ... It's easier said than done... And your right ... But, by staying together tight with family you can win this thing.... YES YOU CAN....

**Post broken into paragraphs by Moderator for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print.**

[Kalliope]

In the years since my diagnosis, the relationships with friends, and family have changed. Some were discouraged because they thought I wanted them to "fix" things that couldn't be fixed, others didn't want any part of my new life and lost contact with me, then there were others that just didn't know what to say. Looking at me with my cane or wheel chair, seeing me fall, or shake was to much.
In time, the relationships (new and old) that I have, have gotten better. We have conversations that have nothing to do about ms at all. They know that I expect nothing more from them now than I did before-just for us all to be there for each other the best we can.

It is a major change that all involved have to have time to adjust to. One of the best things you can do for yourself is talk if you need to talk. If people feel uncomfortable and distance themselves, than your better off. Surround yourself with those that are in if for the long haul. Time and understanding (on both parts) will do wonders. Try to keep some normalcy in your life. Don't let your life be all ms. There is so much more enjoyable things to have in it.

[Shiela]

Thanks all of you for listening, for your replies and insight. It will help me in this journey.

[dougl]

Can anyone please make suggestions, from a caregiver's viewpoint, how I can make things easier on those I love?

speaking as a caregiver, i'm sorry but that is just wrong.

those you love should be making things easier for you. not the other way around.

[DancingOnTheEdge13]

I was dx'd when my youngest was less than a yr old. For years I could do for myself. The last few yrs have gotten harder, I went from RRMS to SPMS. That year old baby is now 16 and in the 11th grade. I find myself apologizing for falling, for being slow, for not being able to get out of the house. This has always bothered her. She usually tells me "Don't apologize! It's ok" sometimes as she is rolling her eyes. She is amazing and very tenderhearted for the most part. We are very close and discuss everything. But the eye rolling hurts. Then I have to remember she's that teen ager.

Dh was dx'd with stage IV Lung Cancer. Now our dd is a caregiver for both of us. Dh gets short with me when he is not feeling well, I probably do with him too although I bite my tongue a lot.

It's no longer about my MS at my house. It's all about cancer. His is a death sentence, my MS is not. So my issues do not get mentioned much anymore unless I am seeing my neuro. Dh's health has taken priority. And sometimes I want to yell that I am battling with my health too. Then I feel bad for feeling that way, and again comes the apology.
What I mean to be manners in their eyes is irritating.

I hope you can find someone to talk to, to share with. I think that's important. People come here and pour their hearts out and these people are awesome. SO my advice if I had any would be to keep coming here and don't over apologize, if that makes sense.