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Post by coffeetalk on May 3, 2015 20:47:14 GMT
Okay Peas, I’m having a pity party and I need help, hugs, good vibes and maybe just validation to see me through this.
I am a quadriplegic (still have limited movement in dominant hand and arm) due to progressive MS. I was diagnosed 8 yrs ago. I am happily married to DH, who is my caretaker. We have two adult DDs, the eldest is married and has a child. I was diagnosed when younger DD was in college — the disease progression has taken a tremendous toll on us all. I rarely leave the house as it requires Herculean effort to get me ready and by the end of the prep, I’m exhausted. Toileting, transport and most everything is difficult away from home. OT and PT come to our home.
DH and I moved 2 years ago from the Midwest to the coast as my condition was getting worse and our eldest daughter and family are here. YD and her s/o moved here shortly after. My speech has been impacted, so phone calls to my friends and family back home are difficult, and I sure miss them
The eldest DD is having her gallbladder removed tomorrow and her in-laws (who are lovely people) will be taking DGC for a few days. I told DD, that she was welcome to come here during the day while she recuperated, and we could watch bad Bravo tv or rest. DH would pick her up and take her home. She said probably not because in-laws were probably coming and going to hang out and help.
I so miss my ‘old life’. For the most part, I’m happy and grateful that I’m loved and cared for. But there are times when I feel devastated and very lonely and useless
UPDATE-- DD had successful surgery and was released yesterday. We FaceTimed a few times and that helped reassure me. Her DH is working from home today and is keeping an eye on her. She will be here tomorrow for a bit.
Thank you for your kind words, suggestions and encouragement. Hugs to those struggling and living with health issues or whose loved ones are. You Peas are pretty darn special!
If you made it this far, thank you for reading. I needed to get this out and off my chest.
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Deleted
Posts: 0
May 17, 2024 21:41:52 GMT
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Post by Deleted on May 3, 2015 20:50:31 GMT
I am sorry. That sucks. It just sucks rocks.
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Deleted
Posts: 0
May 17, 2024 21:41:52 GMT
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Post by Deleted on May 3, 2015 20:50:42 GMT
I'm sorry. There aren't any adequate words.
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calgal08
Pearl Clutcher
Posts: 2,519
Jun 27, 2014 15:43:46 GMT
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Post by calgal08 on May 3, 2015 20:50:54 GMT
You have every right to miss your old life. I can't even imagine what life is like for you now. My heart breaks for you.
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michellegb
Pearl Clutcher
Posts: 3,915
Location: New England and loving it!
Jun 26, 2014 0:04:59 GMT
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Post by michellegb on May 3, 2015 20:51:34 GMT
Oh my you have so much on your plate and I can only imagine how frustrated and sad you must feel sometimes. Sending big hugs, good vibes, some positive thoughts and big hugs. You are validated and I hope that your DD changes her mind and that you get to send some time with your DGC.
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Post by mom on May 3, 2015 20:52:22 GMT
I'm sorry for what you're feeling. Do you think that your daughter knows how hard things are for you and just doesn't want to add more to your plate? Maybe you could call and tell her that you'd love to spend the day with her. Atleast then she would know that you would like to see her.
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Deleted
Posts: 0
May 17, 2024 21:41:52 GMT
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Post by Deleted on May 3, 2015 20:52:27 GMT
Hugs
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Post by ntsf on May 3, 2015 20:52:45 GMT
we love you and recognize that your struggles are mighty. we can also mourn for our old lives..but you have had more than most taken away from you. may your dd's surgery go well and you can continue to find joy in the small things. all our bitching about small things seem so minor compared to what you have to do. God's blessings on you and your family.
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Post by epeanymous on May 3, 2015 20:53:58 GMT
I'm really sorry. That has to be so hard.
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caro
Drama Llama
Refupea 1130
Posts: 5,222
Jun 26, 2014 14:10:36 GMT
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Post by caro on May 3, 2015 20:54:52 GMT
I am so sorry. I know there are no words of comfort that makes a dent in your sadness. Bless you.
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oldcrow
Pearl Clutcher
Posts: 3,828
Location: Ontario,Canada
Jun 26, 2014 12:25:29 GMT
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Post by oldcrow on May 3, 2015 20:56:04 GMT
You are obviously a strong person but I cannot imagine dealing with all you have on your plate. You have every right to feel sorry for yourself and your situation. Sending you hugs.
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Post by Really Red on May 3, 2015 20:58:08 GMT
You are SO brave!!! I think your note is a wake up call to all of us to maybe go the extra mile and do things that may be hard for us - the mobile - just so people who are so brave as you can have a respite from your day-to-day stuff. I can imagine it's hard on everyone, but in the end, it is hardest on you. I hope by your writing that it means that you can write easily and without being so tired. It's a good way to stay in contact with people.
Because if you can, what if you started a blog? YOu could blog about what you're going through, blog about the TV you watch (and seriously, lots of people would LOVE this), blog about anything!
I hope your DD reconsiders. I know it's tough for everyone. I hope there is a great surprise in your future.
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Post by bc2ca on May 3, 2015 20:58:12 GMT
{{{hugs}}} It is so hard to be of sound mind and have a body that is getting in your way . DD's godmother has MS and she has only slightly more mobility than you and no impact on her speech at this point. We were able to stop in and visit her on our trip south last year and it really broke my heart to really see what limitations she is faced with.
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Post by lesserknownpea on May 3, 2015 20:59:09 GMT
I know from experience that it helps when people hear your story, and care. And we do. I do.
Ms is devastating because just as you adjust to limitations, you get exacerbations , and must adjust again.
Grief for the life you might have had, envy and even resentment for your peers living their "normal" lives.
Guilt that your loved ones must care for you, and their options are also limited because of the disease.
You are dealing with so much. And it's not fair!!
Your DH sounds like a gem.
I think you're disappointed DD isn't coming to recuperate with you, you would have enjoyed the company.
I'm glad you vented here, I hope it helps.
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wellway
Prolific Pea
Posts: 8,769
Jun 25, 2014 20:50:09 GMT
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Post by wellway on May 3, 2015 21:02:31 GMT
I'm so sorry. Hugs x
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BarbaraUK
Drama Llama
Surrounded by my yarn stash on the NE coast of England...............!! Refupea 1702
Posts: 5,961
Location: England UK
Jun 27, 2014 12:47:11 GMT
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Post by BarbaraUK on May 3, 2015 21:03:54 GMT
That is so much to have to cope with. You are definitely validated. Sending lots of hugs, positive thoughts and good vibes from across 'the pond' to you.
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Post by femalebusiness on May 3, 2015 21:07:25 GMT
A good pity party once in a while can clear the pipes. You are dealing with a lot. Life just sucks sometimes. (((Hugs)))
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Post by airforcemomof1 on May 3, 2015 21:10:57 GMT
I am so sorry you have so much to deal with. I wish your DH would tell your daughter how much it would mean to you if she would come to your home. Perhaps she will after all. I hope so. Hugs!!
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Post by hop2 on May 3, 2015 21:12:37 GMT
Validation, by all means. your more than deserving of a pity party if you want one. We are here 'listening' and caring, another pea said it but truly the women on here are ( for the most part ) a very caring bunch.
{{{{hugs}}}}
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akathy
What's For Dinner?
Still peaing from Podunk!
Posts: 4,546
Location: North Dakota
Jun 25, 2014 22:56:55 GMT
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Post by akathy on May 3, 2015 21:25:57 GMT
I'm so sorry, your struggles are huge and I'm amazed at how brave you are. It makes me humbly aware that there are many people far worse off than I am. I can understand how greatly you miss your old life, I certainly would too.
I have two people in my life whom I love and care deeply about with MS. I will keep you in my prayers. Big hugs to you!
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valincal
Drama Llama
Southern Alberta
Posts: 5,636
Jun 27, 2014 2:21:22 GMT
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Post by valincal on May 3, 2015 21:42:00 GMT
Sorry you're feeling down. That's a lot to deal with. Hope tomorrow's a better day. Take care.
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Post by zztop11 on May 3, 2015 21:53:51 GMT
Oh, that is so sad. I'm sure she's dealing with a lot of stress right now. Is it possible to have a heart to heart with her. Maybe she can at least pick out one day and come over. Tell you that you need to be able to "mommy her". She should come in her PJs. She can rest at your house just for one day. Tell her how much it would mean to see her there taking a nap, having some snuggle time together. I hope she understands. Before my mom died, I would go over there sometimes and just take a nap. It made her so happy to know that she wasn't the only one in the house and that she could "mother" me. I hope it works out.
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Post by momof3pits on May 3, 2015 21:54:44 GMT
I'm so sorry. My mom has MS. She is affected from the waist down. I know she tries to be so strong, but sometimes the things she let's slip to me break my heart. I'm dreading the future as things get worse for her. Sometimes life just isn't fair.
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tincin
Drama Llama
Posts: 5,368
Jul 25, 2014 4:55:32 GMT
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Post by tincin on May 3, 2015 21:55:45 GMT
Hey, everyone is entitled to a pity party now and then. This is a great place to come when you need one. Most everyone is understanding and realizes we all face different challenges and we all need some compassion now and then. I hope you DD does splendidly with her surgery and is soon back on her feet.
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Post by lucyg on May 3, 2015 21:59:54 GMT
You are amazing, remember that. I hope your days get better. Feel free to come here and complain when need be. We're "safe."
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my3freaks
Pearl Clutcher
Posts: 3,206
Location: NH girl living in Colorado
Jun 26, 2014 4:10:56 GMT
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Post by my3freaks on May 3, 2015 22:03:15 GMT
I'm so sorry. Vent away here, you deserve a pity party once in a while, and you always have an outlet here.
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Post by coffeetalk on May 3, 2015 22:08:25 GMT
Thank you, Peas and thank goodness for the internet for I've ''met'' so many great folks with MS or paralysis due to SC injury or other diseases or stroke. Some have loving families, but some are heartbreakingly on their own. I've lurked here and on the old board for years and learn so much here and feel connected. A few years back we were visiting DD and scoped out a +55 community figuring we'd eventually move out here as travel was getting difficult . Another couple said hello and the husband pulled mine aside and asked what we thought about the model homes since he noticed my wheelchair and his wife had just been diagnosed with ALS. That reminded me that as difficult as my diagnosis/prognosis is, there are others with greater challenges--I think of her often. Or my DSIL's Aunt who at 51 has early onset Alzheimers. DD called and we talked and I told her she's welcome to ''veg'' here if need be and as always that I love her.
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eastcoastpea
Prolific Pea
Posts: 9,252
Jun 27, 2014 13:05:28 GMT
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Post by eastcoastpea on May 3, 2015 22:13:33 GMT
Hugs and positive vibes heading your way.
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Post by leannec on May 3, 2015 22:17:57 GMT
That is hard ... positive thoughts and hugs to you
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Post by luanne on May 3, 2015 22:50:16 GMT
Hugs to you honey
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