Thursday, February 19, 2009

ALS Hates “Happy”

I just read a quote from a PALS (person with ALS): "ALS hates happy"….I have been trying to keep a PMA (positive mental attitude) but I think I'm losing the fight. The past month and a half I've taken a downward slope in my progression….nothing NEW, just "the same, but worse." What makes it harder is that there are some things that would make my quality of life much better but I can't afford them. Now, I'm not talking things like a vacation (although that would certainly give me something to look forward to and WOULD increase my quality of life…although I'd rather just be able to go back to WORK!). I'm on oxygen at night now in addition to my AVAPS (non-invasive ventilator). I had hoped it would help me sleep better, but no such luck. Sleeping with a mask on is hard anyway (as any FEMALE with a CPAP will attest…I think men can sleep anywhere under any circumstances, so they don't count). Having the mask tethering you to a gizmo is a pain. Having the tether be 1" corrugated tubing (that isn't comfortable to lay any body-part on) is less-than-pleasant. Now add the fact that my joints and neck hurt…and turning over or moving in bed is hard. What that all adds up to is my sleep SUCKS. Meds aren't even working anymore. I'm more tired that I should be, and I was tired enough to begin with. I try to nap every day but that just takes more "life" out of life. I need an adjustable bed that has memory foam so that I can comfortably stay on my back in one position all night.

We need a vehicle that is suitable for all of us. We have been given a cargo van converted with a wheelchair lift, but Christopher cannot safely ride in it. After checking with several dealers and body shops we've been told that there is nothing that can be done to remedy the situation. All I want to be able to do is go out with my son!

It is bad enough having ALS and being without a spouse-caregiver, but life is getting really difficult and discouraging. Other PALS (persons with ALS) complain that they "spend all their retirement" on ALS-related expenses. I'm growing less sympathetic to that complaint. I'd gladly spend any retirement I have to be able to enjoy the time I have left. I have no retirement to spend.

If I sound like I'm having a complain-a-thon, I am. I've been stoic as long as I can. I am angry about having ALS and angrier that I am STUCK staring at my walls all day long. This is NOT a LIFE.

I apologize for the negativity. I'd love nothing better than to be able to work harder to meet the needs of my family…"pick up an extra shift" as it were. What would you do if you were in my situation? ALS hates "happy"………..

6 comments:

April said...

Hang in there! I do not know how it feels to be in your situation. However, my sister Stacie has had ALS since she was 21. She will be 33 in April. She had a very progressive form and lost everything including the ability to communicate within the first year. My father just passed away from ALS in June, he was officially diagnosed in Novemeber. The illness took him very fast.

I love them both more than words can express. Although Stacie is alive, I miss her terribly because she can no longer tell me how she feels, what she needs, etc.

Please hang in there. Fight the fight! Your story is so important. Keep writing and keep sharing. It helps me to read your blog. It helps me to know how she feels. Happy or sad, angry or helpless..

You are not alone Claudia. God bless you. HUGS!!!!

April Thomas
Cape Cod, MA
aprilsparkles@yahoo.com

April said...

Hang in there! I do not know how it feels to be in your situation. However, my sister Stacie has had ALS since she was 21. She will be 33 in April. She had a very progressive form and lost everything including the ability to communicate within the first year. My father just passed away from ALS in June, he was officially diagnosed in Novemeber. The illness took him very fast.

I love them both more than words can express. Although Stacie is alive, I miss her terribly because she can no longer tell me how she feels, what she needs, etc.

Please hang in there. Fight the fight! Your story is so important. Keep writing and keep sharing. It helps me to read your blog. It helps me to know how she feels. Happy or sad, angry or helpless..

You are not alone Claudia. God bless you. HUGS!!!!

April Thomas
Cape Cod, MA
aprilsparkles@yahoo.com

April said...

Hi Claudia,

Thank you so much for writing me!!

I did see that you are a fire fighter and paramedic. On a helecopter.. no less. All I can say is that when I saw that I immediately thought you are a HERO in SOO MANY WAYS!

Pat, my fiance is a fire fighter at the Hyannis airport in Cape Cod, MA. He will be going to school in the fall to get his paramedics. He and I are so moved by your story.

I hope you don't mind but I looked at your other site, and saw all the wonderful pictures of you and your family. I am so glad I found it and learning more about you is so amazing to me. I can see how much courage you have and I know you probably don't feel that way a lot of the times having ALS.

But when I read your blog, I see so much strength and heart. I can't imagine how difficult it has been for you. When you talked about the difference between slow and fast progression, it really resonated with me. So much of what you wrote resonated with me.

I have found a few other PALS blogs and some caregivers within the past week. It devestates me to see so many suffering but I also am really glad I found you and them. I am always here should you ever need a friend. I truly mean that. Now that I know you, there won't be one day that I won't think of you and hold you close to my heart. Just remember as each day comes, we are that much closer to a cure.

I am here for you and will always be here... all the way.

Gob Bless you and your family.

With love,

April

Greg said...

I can't imagine having a progressive disease like als, I am an individual with a disability (quadriplegic). I too have a service dog (black labrador retriever) and will soon be getting a c500 permobil, how do you like yours?

I hope you have a good day, hang in there! Stop by my blog sometime.

Anonymous said...

Hello Claudia...I too am a retired R.N. due to multiple disabilities. I found your link to this blog on ancestry.com. You copied the picture of Byrd and Alice Matilda Robertson to your family tree. I obtained that picture at this website jgrussel.com.....Judy has done extensive research on Robertsons,Gentry,Ellis ets. Check it out when you can. How are you related to Bryd and Matlida?My direct line comes through his son Eunice Earl Robertson, and wife Ruby Lindy Mullins. I would love to share and discuss our common ancestry. I have found genealogy to be a great distraction. I always was a wanna-be quilter, and dreamed someday I would acquire the skills to make each of my four children, and ten grandbabies a quilt to pass on to them. However I never applied the time, nursing can be very demanding. Now I know I have found a true passion for genealogy, and my "quilt" that I will pass on, will be in the form of a patchwork of information of their ancestry.
Please contact me direct if you would like to share, nanalovin@gmail.com.
Know you will be in my thoughts and prayers. Sherry in Texas

A Romantic Porch said...

Claudia, I haven't been able to get you off my mind. I am so sorry for your pain and struggle. Life does seem hard and unfair. I hope you will feel the loving arms of God all around you. xo rachel