Frustration

[heathergail]

I was diagnosed in May last year and the disease is progressing slowly but surely. My biggest problem is trying to cope with the frustration of not being able to do the things I used to do (my hands are virtually useless and my legs becoming weaker). Any tips on how to cope with this? My husband particularly suffers from my frustration and he tries so hard to be kind and patient with me!

 

[chally]

heather, i can totally relate to this. i was so active my whole life and then BAM this nightmare comes along out of the blue. been telling myself over and over as the list of "CAN'T DO" gets longer that i would be better off if i just take things one day at a time and not have big expectations about getting things done. it's not easy that's for sure. asking for help is new for me but i think the spiritual principle of being Humble is a lesson for me to learn,( i guess). i sure don't know much about life or death, who really does? living in the moment when i can helps me with anxiety and frustrations. maybe this helps. oh yea and BREATHING helps too. love ya chally

 

[Atsugi]

Any tips on how to cope with this [frustration]?

Heather, it helps simply to read and contribute to the many discussions here. Helping others with your experiences is valuable.

I think perhaps "frustration" is the difference between expectations and reality. The Serenity Prayer comes to mind. I'm not religious at all, but the philosophy is perfectly suited for frustration.

Many PALS have discussed this. More will chime in, I'm sure.

Good luck. --Mike

 

[hjlindley]

When I was first diagnosed, I was so frustrated and angry. I went to a counselor and we broke my frustration down into smaller pieces. Then we figured out the ones we could fix and the ones we couldn't fix. For instance, I really wanted to take care of my personal hygiene for as long as I could. She recommended an aftermarket bidet and it is been a wonderful addition to the house. I still get frustrated, but I've adjusted my expectations and it seems to be easier. Good luck!
Hollister

 

[notBrad]

Hi Heather,

I completely understand. Just about everything I do/did involved using my hands (sports, music, hobbies, etc...) so as you can imagine the frustration arises pretty regularly. Having said that I have three words of advice - adapt, adapt, adapt. Put your frustration into devising work arounds for the things that stymie you. For me anyway the new way becomes quickly ingrained and erases the frustration.

Once you get into the habit it becomes very second nature.

HTH and welcome to the forum, lots of good people and advice.

Take care,
Brad

 

[lgelb]

What kinds of things did you do, that you miss? Probably someone here has dealt with that specific loss as well.

Generally, if you still have your voice, you may be able to teach/help/direct someone else do/learn what you did, operate a computer (which can open doors for art, music, video, other content creation/consumption), TV, lights, whatever you choose. Since your voice may not last as long as your disease, you might want to consider recording something for the future -- for family, work, hobbies, write a book...

It is impossible not to be frustrated, and not everyone achieves serenity (I personally have no idea what that is). Hopefully, you can channel the best of what you did/know into something that is different but nonetheless holds value for you. Another way to think about it is, if you hadn't been doing what you were doing, what would you have done instead?

Best,
Laurie

 

[swalker]

I can relate very well. There are so many things I can no longer do. I see that some of the things I can still do I will not be able to do for long.

But, and this is a real big but, I still have the ability to be a great role model to others. I choose to be filled with joy in spite of my circumstances. In fact, I would say that my current circumstances give me the opportunity to be more filled with joy than when my thoughts were preoccupied with the mundane things of ordinary life before diagnosis.

I am a christian, and than certainly influences my approach. My approach may not work for others. What I have found as a gift is the ability to spend more time in prayer. Not for me, but for others who are hurting in various ways. There is a blessing for me in all of this.

So, while I can no longer work, backpack, climb, hike, work on the car, etc., I can still read, influence others, help at church, spend time with loved ones, and try to have a smile on my face even when things don't quite seem worth smiling about.

So far, this is working well for me. Of course I have down days. But, I have far more good days.

Good luck, and know that you are in the prayers and thoughts of many here.

Steve

 

[heathergail]

Thank you for your quick responses, really appreciate it. While I know and understand everything you say I am still finding it difficult. Could I be grieving for the loss of these things? The Serenity Prayer is my saving grace as I do say it often. I have also recently learnt another saying "it is what it is" which basically means accept or walk away. I do try but give in every now and then. I will be strong! Go well everybody and thanks again for you advice

 

[Nuts]

Heather, acceptance is not easy, but I don't see how anyone gets over the grieving and moves on with life without it. I don't think it's ever total -- we all slip -- but it's what allows us to focus on what we have instead of what we've lost.

I saw a post not long ago, and I wish I could remember whose it was and where I saw it, that said there are facts and there are problems. Problems are things that can be fixed, and we fight to do so. Facts cannot be fixed, so we find a way to live with them. ALS is a fact--you cannot fix it--so anger and grieving only rob you of the life you can be living now. I hope you are able to find acceptance and then find joy in the life you have. That's really the only way to fight ALS--LIVING with it instead of letting it rob you of your potential.

Much love....

 

[affected]

Nuts that's one of my sayings:
When you have a problem there is a solution. If there is no solution you no longer have a problem - you have a fact.

The fact of ALS is a hard one to accept and Heather yes you grieve every loss and it's tough indeed. We will all help you however and that is not to be underestimated xx

 

[gooseberry]

In a sense Heather, you need to grieve and then make a choice about the rest of your life. You have the ability to make choices to seek help so you can change the way you do things to maintain your independence. Or, you can choose not to participate fully in the life you have left. I think at some point, each pals has to make this choice.

I would never say als gets easier to live with but you find a way to adapt to changes in your life more easily. It becomes second nature.

 

[karla r]

I have a "caretaker" personality. I am the one who was always taking care of someone. My grandmother spent a year and a half living with me before she insisted on going to a nursing home after I had what they thought was a small stroke leaving my right leg with drop foot. My uncle had power of attorney, and I couldn't stop it. This is how I pretty much spent my life. Taking in people, and caring for them. My husband used to joke we had never lived alone because we always had someone needy here. I find it very hard to let someone else do for me. My best friend Heidi who came to take care of me, told me to stop apologizing for asking her help for things. She said it was her heart that led her to move here, and she was grateful that the help she gives me allows her more time to spend with her best friend. I still feel a bit guilty, but that helped. I shared in hopes that maybe it will give you another way to look at things.

 

[Osiyo]

Well, something snuck up on me and bit me in the fanny, I was diagnosed as possible ALS on the 29 of July this year 2015, so I am a newbie, and I must say what a ride! I have MRI's coming up the next 2 weeks, 2 of them at 2 different locations, keep me moving. Then they will make it final, you have ALS, My father died from it 2001. Yes Frustration, is a bad thing but, as I am looking at the reduced things I can't do I noticed that I would always come up with a means to get the job done, We are very adaptive in nature and it should be a natural for us all, I find myself trying to put sucks on, come on simple, no, I have still 100% of all movement but a fantastic stiffness, I can't bend down to put my socks on, Ok stupid I told my self and look around for something that maybe would help me, not having anything in particular in mind I noticed in a closet a long shoe horn, bingo! I can now put my socks on without help and shoes for that matter using this long shoe horn. Just a story that I hope you will pick up on not the shoe horn but the spirit of adventure, I have to live with this up coming prison, but I will find a way to accomplish whatever I might trying to get done. I am created with this spirit. And so are you.

Our lives have been turned upside down. We have the choice of fighting it or working with it, it is an attitude problem, I am not always up and on top of everything but I have realized I don't have to either. Life was always a roller-coaster, to a degree, not it has really become a wild roller-coaster ride and I find myself really having to hang on tightly. So no matter where you find yourself in this last trip, take command of it or it will really become hell on earth, and the problems are enough as they are that I don't what to have to fight myself also.

Chin up and enjoy those around you that really do love you or they would not be there. Be blessed because I am blessed, not all too sure how but still.

 

[heathergail]

Thanks again for your comments. I have taken them all on board and today is the first day of my new and positive life! I am going to be more positive and not give in to my weaknesses (but am allowing a little sadness every now and again). I am also going to be (hopefully) less impatient with myself and others and learn to take things more in my "stride" at a slower pace. Stay strong everybody, I think about you all so often. Bye for now from sunny South Africa.