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I don't have anyone IRL that I can talk to about this

PinkTulip

By PinkTulip,
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PinkTulip

PinkTulip

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My DH was recently diagnosed with MS. Because of his job, we have decided not to tell anyone because there is a very real chance that our income would significantly decrease. He has been relatively OK up until this last week where he has been having a really bad flare. He has completely lost his voice, where it even hurts to whisper. His stomach muscles are cramping so bad that he can't stand up straight, and his balance is a little off, so he holds on to furniture and walls to not fall over. He also has an excruciating headache constantly for the last few days.

 

In addition to all this, we finally got into the neurologist (2 month wait), and learned that DH has a lesion in his left frontal lobe about the size of a bouncy ball. This is the area of the brain that controls, among other things, personality. This actually makes perfect sense because for several years now, DH has been very snappy and sometimes outright mean. I do my best to protect my kids from this which means I usually take the brunt of it.

 

In the last 7 months, oldest DS has had 2 brutal and excruciating surgeries, which he is recovering well from, but those left me emotionally exhausted. DH was diagnosed about a month after the 2nd surgery, right when I was starting to think things were going to get better.

 

The hard part is that when people ask how our family is doing, I happily tell them that DS is doing great and recovering nicely, but they have no idea what else is going on. I have several roles in my life (PTA, church stuff) that I was kind of flakey with during DS's ordeal, and now people are kind of annoyed that I'm not stepping up more. What they don't realize is that I'm at home helping DH manage things and keep our business going.

 

I guess the point of all this is to be nice and extend grace to those around you, because you have no idea what they may be dealing with at home.

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bethben

bethben

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May I suggest you find someone you can trust and outright ask them to be there for you?  As in, "I am going through a really tough time right now.  I need someone I can rely upon for emotional and possible physical support".  I did this to someone when we adopted our youngest.  I knew it was going to be a tough time and I asked a little more than an acquaintance friend this question: "I am going to really need someone who can be there for me - watch my children sometimes, give me a shoulder to cry on, be like a sister to me.  I can never repay you.  Can you do this for me?"  She said yes and we've become really close friends.  I know in theory that people should step up and figure out how to help, but I've learned through the years you have to outright ask for support.  

 

I would also suggest that you make your outside commitments as sparse as possible for a while.  You can always add stuff back in later.  I have discovered, especially when your dealing with exhausting medical stuff, to keep your outside commitments to practically nothing.   Let stuff roll off your back.  They'll get used to you not stepping up and find some other person.

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Kari C in SC

Kari C in SC

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First I am giving you a virtual hug. I'm sorry this is so hard. Next, I am telling you that you do not have to do anything you don't want to do. PTA, church stuff, other family stuff. You can just say no. No explanation needed. This has been a huge thing for me to learn. I have the right to say no and not offer a thing more. I agree that, if possible, you need a go to person IRL to share your life with. Take care of you and yours and don't worry about the rest. Lots of hugs.

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Southern Ivy

Southern Ivy

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:grouphug:  :grouphug:  :grouphug: 

Concerning your husband's pain, you might want to consider a massage membership somewhere. My sister (a massage therapist) has a client who schedules weekly or biweekly in-home massages. It really seems to do the client a lot of good. 

As for the people becoming annoyed, let them. Your first obligation is to you and your family. They can find someone else to do the work. You have your hands full! 

Praying for you! I can't imagine the stress you feel right now. 

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Guest

Guest

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I am so sorry. I find that people are generally not that compassionate when others go through a proplonged hurt. I agree with upthread; if there is someone IRL who can know and can advocate for you, tell them and ask for support. In any case, don't carry guilt about whether other people think you are awesome or not. You have to protect your own family and are not responsible for fulfilling everyone else's wishes.

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StephanieZ

StephanieZ

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((((hugs)))) Wow, that sounds really, really hard! Your family is your #1 responsibility. I'd step totally out of your other volunteer commitments.

 

It is best, I think, to just resign politely and firmly and then STEP AWAY. If you really feel obligated to provide a "good" more detailed excuse, simply LIE if you want/need an "easy" out.  (Yes, you read that right. Lie.) Tell them some simple made up thing about some OTHER relative -- perhaps a parent's health or your own health (something vague and not life threatening -- but something that requires you to get lots of rest or something like that) -- and tell them it is private, please don't repeat it, but that you are needed to devote a lot of time/energy to helping this other relative (or your own rest, or whatever), and due to that, you can't volunteer any longer. Period.

 

If you can't bring yourself to lie, then you simply must bring yourself to be honest, which is the best approach, IMHO. Honest doesn't mean telling your family's private business. It just means saying, "Honestly, I simply cannot volunteer any longer due to personal reasons. I totally support this organization, and I hope to be able to pitch in here and there, but I can't accept any ongoing duties at this time. Someday, I hope to help again, but as of the last of this month (or some other sensible date, so long as it is within a couple weeks from today), I am resigning my position(s)." That SHOULD be sufficient to end your obligations, but if someone pushes hard, you will have to either do a replay of, "No, I'm sorry, but I no longer have time to help with X, Y, Z, so I had to resign." or something along those lines. 

 

Since you are homeschooling, a simple explanation that as your child(ren) are getting older, you've found you must devote MORE time to preparing lessons, etc . . . that would be a reasonable excuse, too.

 

Again, I think honesty is best, but if you can't be honest while still being private, then feel free to lie. IMHO. I've never had to do that myself, as I am comfortable with saying NO and I don't really care what most semi-strangers think of me. (If they can't accept a polite NO, then that's their problem.) But I know that most people are more sensitive to strangers' opinions than I am. That's why I'm suggesting a polite lie.

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Lanny

Lanny

Posted
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Sorry for the medical problems your DH has. There are 2 "on air" personalities on Fox News Channel who have MS.   I believe they are Neil Cavuto and Janice Dean. Before we built this house, for 9 or 10 years, we lived next door to a Neurosurgeon. Frequently, they can perform "miracles".  I hope that will extend to your DH and the lesion you described.  Try to take it one day at a time and do the best that you can to keep your home relaxed and cheerful. 

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redsquirrel

redsquirrel

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First of all, much love to you.

 

If people ask how things are going I would be saying something like 'DS is doing so well recovering from surgery. It is really wonderful. However, as you can imagine, there are many things that the rest of my family needs right now. We were so focused on DS for such a long time, a lot of things had to wait. I am so glad I can turn my attention to those things now. So, if you don't see me or I seem a bit scattered, that is why. They need to be my primary focus right now"

 

What are they going to do? Argue with you about it? I have heard plenty of people say something along those lines that I wouldn't even think twice or question it.

 

Heck, I would be more expecting to hear "DS is doing great and now I am taking some time to fall apart. So you can all go away now"

 

Is there an MS support group or something like that, near by or virtual, that you can connect with. Because you are going to need it.

But, I do hope you can find a support person or network, because you deserve to have that in your life.

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clementine

clementine

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:grouphug:  :grouphug:   I understand your wanting to keep the MS a secret.  I am so sorry for everything you are going through.   :grouphug:

 

I think you should just be able to say 'I've got a lot on my plate right now. Hopefully, when things calm down a bit, I'll be able to help where I'm needed.'

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J-rap

J-rap

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I just want to say that I'm so sorry you're going through this.  Also, regarding the lesion on your husband's brain that may be damaging certain circuitries, the brain can be taught new circuitries in new areas through therapy.  Your husband can learn more appropriate behaviors again.  You have a lot going on, and you will need to gather your family close and just focus your energy on that.  It would be so nice if you had one or two people IRL that you could talk to, maybe not even in your circle of friends now, but someone through an MS support group, for example.

 

Best wishes to you and many :grouphug: :grouphug: .

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Tammyla

Tammyla

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:grouphug: I hope you can find a way to deflect the irritation coming your way and focus on your family.  I agree finding a trusted someone you can vent and rely on would be a blessing.  

 

I had a friend years ago who had MS.  She put on a good front, and I always felt unsure and awkward about offering help. ( She had three kids, I had none and we didn't have a lot in common.) Occasionally she asked when in a real pinch, but looking back I wish I'd felt more comfortable butting in and doing more.  What I'm trying to say is that I would have be so happy to help.  Try to allow yourself to look for and find help. :grouphug:   

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fairfarmhand

fairfarmhand

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I would also suggest that you make your outside commitments as sparse as possible for a while.  You can always add stuff back in later.  I have discovered, especially when your dealing with exhausting medical stuff, to keep your outside commitments to practically nothing.   Let stuff roll off your back.  They'll get used to you not stepping up and find some other person.

This.

 

It's noone else's business what is keeping you from volunteering. Quietly make yourself scarce from organizations that might ask for leadership postions. If asked, a nice vague comment is " We have a family member who is suffering from a chronic illness and I can't commit to anything else." When pressed, simply saying "It's a private matter."

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LostSurprise

LostSurprise

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Sometimes when we've had bad news for people for awhile or been the 'needy family' it is hard to share things with people. It's awkward. It's hard to know how much to say. We don't want to experience that awkwardness when people don't know what to do or say around tragedy. It even takes time for us to process personally so it can be really hard to talk about in a casual conversation. 

 

Feel free to be extremely vague. Something on the order of "ds is doing better, thanks for asking, but we have other things going on right now. Please keep us in prayer/I'm can't really talk about right now/etc. We've really appreciated your support" and move on. 

 

I'm not a very good liar but I don't really like to talk about our medical problems ad nauseam. I notice "we're as well as can be expected right now" and end with something a bit more upbeat they might be interested in such as your son's recovery or another child's triumph. Most people will move on. 

 

:grouphug:  Of course, do what works for you. Just know you're not alone. Life can be pretty cruddy sometimes. 

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PinkTulip

PinkTulip

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Thank you all so much for your love and support. Like many of you have said, I am really bad at asking for help, as I feel like it's my problem and everyone has their own stuff to deal with and don't need to take on anyone else's issues.

 

But I will try to think of someone who can be my "person" to help when I need it. My sister that I'm closest to lives 1500 miles away, and my sister in town is wonderful, but I learned years ago that she is busy with her own life and cannot be depended upon when you really need help.

 

I know in my head that things are going to get better, that DH will get through this flare and be ok(ish), but just for a moment, in this particular place, it's rough for a second.

 

I love this community so much because I know that whether I need a place to celebrate something wonderful, vent about frustrations, seek advice, let loose some silliness, or express sadness, the Hive is there for each other - thanks!

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pehp

pehp

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I am so sorry. I agree with everyone who says to let go of as much as possible and I will say a little prayer that you can find That Person who will be helpful and a trusted confidant.  You do need that, I think, at the very least.  

 

 

 

 

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StephanieZ

StephanieZ

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I had a thought after reading the above great ideas . . .

 

the perfect explanation is, "DS is doing so much better now, and we are grateful to be through this dark hour. Going through this reminded ("convicted" me if your circle uses the word that way) me how precious this time is, and I've decided to focus my time on my family right now. So, unfortunately, I won't be able to do X/Y/Z after this month."

 

If that doesn't end it, I can't see what would. Short, sweet, pretty much true. 

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justasque

justasque

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"My dh needs my help with the business for a season" is both true and vague and not focusing on the illness per se.  Ideally, you will be able to phrase it in a way that implies the business is thriving rather than dh is struggling.

Obviously, you will need to consider how to make an income as your family moves further with this illness, whether you will be taking on more and more of the running of dh's business (do you have the skills/education to fully take over for him?), or whether you will need to be a breadwinner in some other way (do you need education/certification/etc to do this?).    "I need to take on more of a role in dh's business", or "I am preparing to take on employment in the future" are both things that most people will understand.

As to the PTA and church stuff - it is better for you to quit and have them find someone else than to be flakey with it.  They will be sad to lose you, but in the long run it is probably best for you and the organizations to have someone else taking on these tasks.  It's not easy, but think of it as giving someone else an opportunity to learn and grow through taking on the tasks.  I'm sorry you've gotten some flack for not doing the jobs perfectly.  That's not fair for volunteer work!!!

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prairiewindmomma

prairiewindmomma

Posted
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As someone who hid major medical stuff from IRL family/friends/society, I get it. I really do.  

 

I recommend a few things:

1. Find some good friends IRL you can be upfront with. I have two in my life, and we hang out weekly. I need a safe place to vent out the craziness in our life. My friends have been very understanding and can help out in a crisis IRL in a quiet, practical way (running errands, helping with a little light cleaning, whatever).

2. Automate what you can of your life---streamline meals, cleaning, errands....and schedule.

3. Embrace that you are on a different path than you were. Even though this crisis may get better once dh is on meds, other crises will come. It is the nature of chronic illness.  You need to rearrange your life for your new reality. Get your commitments to a gracious closing place, and let them end. Really. 

4. Read some more on MS. The personality changes are very "normal" and you and the kids may get to the point of needing some healthy emotional space away from dh---with friends or hobbies or whatever. Your kids especially need to understand that sometimes it's the MS speaking, not dad.  Caring for the physical and financial side of things can be fairly straightforward; navigating the mean and irrational is hard. ***hugs***

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Jasperstone

Jasperstone

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Does he drink diet pop? Just told this week how aspartame poisoning mimics ms symptoms. I know this is off topic, but I thought I'd share.

 

This↑↑↑↑

Yes, I know of someone (friend of a friend) that recovered from MS by stopping aspartame.

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Pod's mum

Pod's mum

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Posted

As someone who hid major medical stuff from IRL family/friends/society, I get it. I really do.  

 

I recommend a few things:

1. Find some good friends IRL you can be upfront with. I have two in my life, and we hang out weekly. I need a safe place to vent out the craziness in our life. My friends have been very understanding and can help out in a crisis IRL in a quiet, practical way (running errands, helping with a little light cleaning, whatever).

2. Automate what you can of your life---streamline meals, cleaning, errands....and schedule.

3. Embrace that you are on a different path than you were. Even though this crisis may get better once dh is on meds, other crises will come. It is the nature of chronic illness.  You need to rearrange your life for your new reality. Get your commitments to a gracious closing place, and let them end. Really. 

4. Read some more on MS. The personality changes are very "normal" and you and the kids may get to the point of needing some healthy emotional space away from dh---with friends or hobbies or whatever. Your kids especially need to understand that sometimes it's the MS speaking, not dad.  Caring for the physical and financial side of things can be fairly straightforward; navigating the mean and irrational is hard. ***hugs***

I have bolded number three as an extra like.

 

Once you allow people to realise you are not a super-woman, but a real person who needs to realign her energies, you can let extraneous duties either go to someone else or just not happen.

It took me too long to step back from lots of extras when my kids needed me. Some took longer to get the message, but none took as long as I had.  ;) 

It is a bloody hard acknowledgment.  :grouphug:

 

 

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