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Post by lesserknownpea on May 3, 2015 22:52:21 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.  Ugh, yes. ALS is the worst. You clearly have the gift of focusing on the positive. But then all the more then you need opportunities to just vent away!! Staying positive is hard work. |
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Post by KelleeM on May 3, 2015 23:08:17 GMT
(((hugs)))
I'm so glad you can come here and be accepted. We're all here for you whenever you need to vent.
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Post by monicad on May 3, 2015 23:16:28 GMT
You sound like a very courageous person and I am so sorry you are having to deal with this. Hopefully your daughter will be able to spend a little recuperation time with you. Don't for one second feel bad that you're down, or about coming here to vent!
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Post by lattemomof3 on May 3, 2015 23:19:32 GMT
Vent anytime you want. I can only imagine how difficult that is. I just promised myself that I will stop complaining about the small stuff, I have really been in a funk lately and my problems are such small potatoes. I hope you will try to connect with people daily, whether it's by phone or online, family or pea friends, it really is important as a way to take care of yourself. You might be dependent on others for physical needs, but keeping your mind in a good place- part of the time, can be seen as a challenge you can work on, something only you can do. Don't feel guilty on tough days though, you are human, and going through so much, it is natural and expected to be feeling the way you are.
I promise I will pray for you often, and think of you when I am tempted to complain about trivial things, and change my attitude. God bless.
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purplebee
Drama Llama
Posts: 6,732 
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Post by purplebee on May 3, 2015 23:26:30 GMT
Coffeetalk, you have every right to a pity party, and you found the right place to come and have it! So glad you feel like sharing with the peas. My friend has MS and is facing so many challenges, I admire your spirit and your love for your family, and theirs for you just shines through in your post.
I'll keep you in my prayers, hope you and DD can have a good girls day together while she recuperates. Hugs to you.....
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lesley
Drama Llama
My best friend Turriff, desperately missed.
Posts: 7,179
Location: Scotland, Scotland, Scotland
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Post by lesley on May 3, 2015 23:29:50 GMT
I'm glad you're coming out of lurkerdom because the peas are awesome. I've had a lot of heartache over the last couple of years, and this is a wonderful place to bring it. Almost everyone is comforting, supportive, and compassionate. And as someone else mentioned, it's a safe place to come too - no repercussions, no guilt, no embarrassment.
I'm so sorry for your ongoing health issues. MS can be so frustrating, as you so often have to re-adjust your expectations as your abilities degenerate. You come across as a strong person, but remember, asking for help and support, and even occasionally sympathy, is not a sign of weakness. It takes a strong person to let others know when they're struggling.
We're always here for you. Hugs.
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Post by tarheelgurl on May 3, 2015 23:53:59 GMT
Hugs & prayers.
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Deleted
Posts: 0
May 17, 2024 23:34:58 GMT
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Post by Deleted on May 3, 2015 23:59:21 GMT
Skype with her, send her flowers, have hubby take you over one night...heck even a call. The small things are appreciated.
Go ahead and let it out, we won't judge you. It sucks, but look on the bright side you have a family that loves you...miss your old life, but look at all you have.
No judgement, just trying to make you smile.
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Post by SabrinaM on May 4, 2015 0:00:36 GMT
((Hugs)) I'm sorry...  |
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~Susan~
Pearl Clutcher
You need to check your boobs, mine tried to kill me!!!
Posts: 3,258
Jul 6, 2014 17:25:32 GMT
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Post by ~Susan~ on May 4, 2015 0:06:40 GMT
I am so very sorry for the situation that your disease has put you and your family in. You have every right to have a pity party. ((((HUGS))))
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Post by scrapmaven on May 4, 2015 0:15:21 GMT
What stuck out was the fact that you feel useless and isolated. Isolation is a dangerous thing, because all you have are your thoughts day in and day out. It's boring and it gets damn depressing. When you look back at your old life w/energy and well being that makes it even harder. How many of your friends are willing to IM w/you instead of talk on the phone? You seem to type well and that's a way to feel more connected to people. That connection keeps us going and it motivates us to keep breathing day after day. Are you open w/your friends about your feelings and limitations? Do they know the depth of your grief? Letting them inside will further connect you and enable you to get even closer to your friends, though you are distant geographically. How about being honest w/your dd about your feelings. Just having her on the sofa w/you, resting and watching a dvd together could be really healing for her and emotionally healing for you.
You are not useless, but you are devastatingly ill. Everyone still loves you and I'm guessing people may not understand what you truly need. I'm talking what you need from your deepest core. You don't need people ordering you around, or feeling sorry for you, but you do need people to empathize and talk to you about stuff other than your illness. You need to also participate in the real world to the extent that you can. No. You won't vacuum or pull the weeds, but you can offer so much more, just by listening and showing love. Encourage friends to visit you. Your grandkids can be loved and adored by you. Spending time playing a board game w/grandma when you are up to it is huge for them and great therapy for you. Your dd can have a memorable time w/her mom watching favorite movies and not just because she had surgery. Take the moments that you can try and find the joy even if it was just 30 seconds that day.
Illness and debilitation is cruel. The more you bring your friends close to you the easier it is to cope. You're not a burden. You're a cherished grandmother, wife and mother.
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julieb
Pearl Clutcher
Posts: 2,845
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Post by julieb on May 4, 2015 0:26:19 GMT
Hugs to you. I would bet your dd thinks she will not be good company after her surgery. I mean, really, who wants to spend any more time with their in-laws (mine are lovely too) then they have to?!
Vent away - you have every right to be disappointed.
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Post by bearmom on May 4, 2015 0:27:04 GMT
I admire your ability to see the positive.
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AmeliaBloomer
Drama Llama
Posts: 6,842
Location: USA
Jun 26, 2014 5:01:45 GMT
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Post by AmeliaBloomer on May 4, 2015 0:47:06 GMT
I admire your ability to see the positive. OP: Lawdy, I can drown in self-pity over much less than you. You may be feeling down and need to vent, but your general attitude is inspiring to others when you do, so keep posting. Win-win. Do you mind talking more about your everyday life? (If not, ignore my questions.) How do you spend your days? Can you still type with your dominant hand or do you dictate? What do you watch besides Bad Bravo?  |
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Post by dreamer on May 4, 2015 1:50:42 GMT
Hugs Mom.
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Post by chlerbie on May 4, 2015 2:47:20 GMT
I'm so sorry. That must just all be so hard.
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Deleted
Posts: 0
May 17, 2024 23:34:58 GMT
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Post by Deleted on May 4, 2015 2:53:32 GMT
You're entitled to miss your old life. It's awful when you're trapped inside a body that won't cooperate with you and do all the things you want to do.
Even when you feel useless and tired, remember that you are valuable. You are an amazing person who has so much love and concern for others. I hope you get to spend some time with your DD while she's on the mend.
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Deleted
Posts: 0
May 17, 2024 23:34:58 GMT
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Post by Deleted on May 4, 2015 2:56:43 GMT
I'm so sorry. Your feelings are totally understandable.
I completely agree with scrapmaven's lovely post-do not let yourself believe that you're useless.
Lots of hugs to you.
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Post by coffeetalk on May 4, 2015 3:19:50 GMT
AmeliaBloomer, thanks for asking, I have used the voice recognition software that comes w. my Mac (not very good) and also Dragon Naturally Speaking (better). The issues are my slurred speech means the voice recognition can't adapt very well to my pronunciation differences AND DH is my caregiver and runs his business from home and I feel self-conscious dictating w. him listening. KWIM? lol, So I use a drop down keyboard that is an accessibility feature on my Mac, controlled w. my mouse in a hunt and peck fashion as luckily I can work a mouse. Thank goodness for my e-reader, audio books, netflix, you-tube, hulu and such to keep me busy and entertained. I love word games and there are lots of them online. PT and OT wear me out even though it is range of motion and passive for me, I still have feeling and I usually am tired and need a good nap each. The Peas keep me entertained also. We moved after many years in the Midwest, so we sold/gave away most furniture and started new. I purchased most everything online or sent DH with an i-pad with Pinterest pins out to find things. We are almost finished. If ever anyone needs tips/tricks/product recommendations for accommodation for home care, DH and I along with some great OTs have researched and found ways to adapt and make things easier. I'm always glad to share what works for us. DH is always proud when Nurses comment on how well my skin looks-no pressure sores-and when he can show them something new. Thanks for the kind encouragement, Peas!
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Post by patin on May 4, 2015 3:40:01 GMT
Wow coffee talk, I am in awe of the things you are able to do! That you are staying vibrant & positive are great testimonies to the woman you are. You & your DH both sound like "can do" kind of people. I hope you get to spend some time w/ your DD- I suspect she doesn't want to be a burden. I think if you share your heart with her she will understand. Blessings to you, please keep sharing!
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Post by mirabelleswalker on May 4, 2015 3:43:51 GMT
It's your party. You can cry if you want to...
I'm sorry you are mourning your old life and facing the challenges of daily living, but it sounds like you do it with much grace. Peace and blessings to you.
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Post by Chips on May 4, 2015 4:19:44 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 If you made it this far, thank you for reading. I needed to get this out and off my chest. One of the greatest therapies there is - are having friends to have a pity party with and the Peas are here for you! ((((hugs))))!
As the daughter of a Mom who has MS, I am sorry this happened to you and that your going through this.
A turning point for my Mom came was in the 1970's when she when she reached out to old classmates, and put herself out there for a class reunion. She was so scared that she could not stop shaking and could not stop it. It was awful to see her like that but when her old friends saw her they were there for her and she came out of that meeting better mentally.
We had moved from a 2 flat in the city to a ranch home in the suburbs and my parents had a ramp built to get my Mom and the wheel chair in and out of the house. The floor plan of the house was open with very little carpet so my Mom could get around in her wheel chair. To this day I wish they had redone the bathroom and kitchen so it would be more accommodating to her. They have a ramp/lift on their van for my Mom so getting her around is easier. So slowly my parents have built and used things to help my Mom.
MS has affected her voice too. She does make a lot of phone calls and everyone is used to the slowness of her speech but she also loves email too. She is an expert party, holiday, social organizer and we all leave that stuff up to her and she loves it. Over the years her caring and loving ability to call or email family and friends has been a great gift because she inevitably knows what is going on in everyone's life. When I had my children she visited me at the hospital and then arranged to have dinner delivered to our home.
Strangely, we are now seeing a lot of family and friends who are passing away before my Mom. I continually see how strong and amazing she is and that she is a leader of our family along with my Dad who has been with her every step of this journey.
I encourage you to have your pity party and maybe it is once a month or more but remember you are loved, have many gifts and most importantly you'll be ok. It is not going to be easy and will be a roller coaster but that is life, a journey, you are so blessed and your light and love is felt beyond what you see and feel! Continue to grow, reach out and love.
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AmeliaBloomer
Drama Llama
Posts: 6,842
Location: USA
Jun 26, 2014 5:01:45 GMT
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Post by AmeliaBloomer on May 4, 2015 10:55:23 GMT
coffeetalk, thanks for the answers. So interesting. I LOVE dictating texts and emails on my phone, but, yes, voice recognition is glitchy, isn't it? It recently heard me say "f**k you" instead of "undo." It was a work email to a superior, and I literally noticed it (and aborted!) as my finger descended toward SEND. Close call. Also, I'm so used to "speaking" punctuation that I sometimes have to stop myself from slipping into it in conversation ("hey husband comma let's order Chinese food from cap happy cap dragon tonight comma okay question mark") It's wonderful there's so much media and regular tech available to you these days, in addition to adaptive tech. I don't think many people realize that a lot of the bells and whistles on our computers/phones were originally designed for accessibility, but benefit everybody. (Just like low-tech sloping curbs and ramps were designed for wheelchairs, but became a boon for people with bikes and strollers.) Whenever Apple comes out with an update, the first place I go is the accessibility section to see what's new. Now I can find my phone when it's lurking at the bottom of my briefcase 'cause I have the flashing light turned on to accompany the ringer. Pretty soon, twenty-somethings will be using eye gaze to select things on their screens - and thinking it was designed just for them! Your husband sounds like a keeper. Love the Pinterest designing/shopping collaboration. The two of you should write a book...or a website. You know, in your spare time...
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peabay
Prolific Pea
Posts: 9,613
Jun 25, 2014 19:50:41 GMT
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Post by peabay on May 4, 2015 11:13:25 GMT
Sending you my love. I could feel your sadness through your words and it's not a "pity party" at all.
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uksue
Pearl Clutcher
Posts: 2,500
Location: London
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Post by uksue on May 4, 2015 11:20:50 GMT
I'm so sorry and my prayers and good wishes are with you. You appear to be accepting your 'lot' in life with a lot more grace and dignity than I probably would and I'm not surprised you want to vent right now. I hope things improve for you.
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Post by alibama on May 4, 2015 11:57:48 GMT
I am so glad you decided to share with us. I am truly sorry for what you deal with on a daily basis. You are in incredibly strong person and my prayers are with you.
I do hope that you will stay around and chat with us!!
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Post by beebee on May 4, 2015 12:46:34 GMT
Hugs!!! I am so sorry. About 3 years ago, I went through a major life-changing health event so I totally get what you are going through. And I am grateful for the care and life I have now. But like you, there are times that I feel just a gut-wrenching loss of my former life. So I totally understand your feelings and I am so sorry you are going through this. Lots of hugs and hang in there.
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Post by gailoh on May 4, 2015 12:47:55 GMT
You are a very brave woman
There are phones out there for people with difficulties ...can you look into that with the phone companies....maybe where you type and it talks for you...I would think there would be something like that out there...
You can always com here to chat and I know it is not the same but we can become a part of your "extended friends list"...
Hugs to you, Honey...Gail
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Post by mikklynn on May 4, 2015 13:23:55 GMT
I'm sorry you are having a rough day. Honestly, I think we all need it once in a while. You are certainly entitled!
Here's hoping your daughter has a speedy recovery!
I'm happy you are here with us on the Refugee board. I hope we'll see more of you.
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Post by Florida Cindy on May 4, 2015 13:25:31 GMT
Of course you can have a pity party! You want to take be with your daughter. You took care of her as a child. I suspect your invitation for DD is your way of taking care of her again. There is nothing wrong with how you are feeling. Since DD declined your invitation, is it possible to visit her for a while at her house? If not, can you SKYPE or video chat with her while she is recovering, if she is able to understand your speech?
Of course you miss your old life. Your life totally sucks right now. However, with your severe limitations, you can contribute to the world. I have fibro and a myriad of other illnesses due to fibro. Although I am not as limited as you, I've been through the emotions of losing and missing my old life.
Writing a daily gratitude list has helped me. Can you start a daily gratitude post here at 2 PS Refugees? We can contribute with our lists of gratitude.
If you can, tell your DD's in laws how grateful you are for taking care of DGS. It will make them feel good.
I know it's extremely difficult to get out. Can you do it once a week or every other week? Do you like animals? Can you volunteer at a shelter and give the animals alot of love? Or, can you get out and do something else you want to do? I know it's exhausting BUT it will do wonders for your spirit.
Have you started a blog? I have a feeling you have alot to say!!! I would certainly subscribe to your blog and link you to social media.
If you want email pals, go ahead and PM. I would love to be your email pal. I am certain others would love to do the same.
Lastly, I know you've most likely inquired about stem cell therapy. Are you a candidate for it? Hugs to you!
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