Why does it have to be especially hard sometimes

[Narrowminded]

This has been a horrible week. My back went out a week ago Friday. Since then the spasms have come and gone and I've muddled through. I know others here struggle from back issues as well. Another "lovely" side effect of this danged disease.

Yesterday I was feeling pretty good. Headed to the mall to get a gift for a friend who will be moving in a couple of weeks. I was supposed to do that shopping the day my back went out. We were having a dinner for her last night. Well, got to the mall, even noted to myself how decent my back felt. Well that jinked it. Never got the gift, limped back to the car. Struggled to drive home, since its on the right side and pressing on the peddles hurt. Tried using the other leg when I could. Got home and got on the floor to do my exercises and took some tylenol. Thankfully DD was home and why I could go out.

This morning has been rough, much time with the heating pad. Then the switch for DH's tobii broke. Now we are down to the letter board again.

A friend sent a vid via FB. It made me cry. It was an older woman playing a hymn in church on her sax. DH used to play every Sunday. I cried rivers. I miss hearing him play his horn.

I can't stand for long due to my back. I spend some time suctioning him and he wants a different TV channel. Well, he refuses to spell out what he wants with the letter board. I'm trying to go through all the channels. Suddenly I cannot stand any longer.

I'm in tears, I'm hollaring at him because he's being ridiculous. DD comes in and he uses the letter board and spells what he wants right out. My back is spasming and he's being a complete jerk.

I know we will get past this, but I HATE this disease. I hate how, possibly FTD has made him incapable of realizing that he is not the only one who has issues sometimes.

I just needed to vent and to very thankful to have a place where I can do that and others totally get it.

Thank you all for being here.

 

[Nuts]

Sweetie, If he has no empathy he will continue to jerk you around because he can. It's not his fault, but it's not yours either. What does he do if you calmly tell him you can't change the channel right now because you can't stand?

Oh, on more than one occassion when hubby has been in bed and I'm so sore I can't even walk the dog, I have taken his chair. Yup, I did. She likes it because it moves faster than I do. My friend started to harass me about it one day and I told her it was this or no walk for the dog. Anyone else who thinks badly about me doing that can just bite me.

Becky
Queen of Not Caring What The World Thinks

 

[Narrowminded]

Thank you Becky - I'm not totally sure about the FTD, I know if it's that, it's not "really" him, but that doesn't always help.

My DD has told me to use DH's chair too, however, DH is 6'2", I'm 5'1 and while i can drive it in the house a wee bit, I can't do it long term, everything is just too big for me and my legs stick out like a little kid. I would use it if I could.

Thank you

 

[KatieNBoyd]

Hi Narrow, I have a picture in my mind of this itty bitty gal in the PWC speeding around with a crazy happy look on her face as her hair flies around going 4/40 down the road dog happily chasing along!

I found this article on FTD that helps some of our friends (who are actually interest in what life is about around here)....

When the Thinking Parts of the Brain Go Awry in ALS | MDA/ALS Newsmagazine

 

[Narrowminded]

Katie, thank you for the article. I've also read other things and a very good web page put together by Tillie. I guess my uncertainty comes from the more than 15 years of this type behavior which also correlates to things in our life when FTD may have started. I'm also not sure given the fact that he rarely exhibit this behavior with Our son and daughter. I try to give him the benefit of the doubt, it just got overwhelming this morning with my back out and the pain I've been in.

 

[JennyC]

If you can take Ibuprofen instead of Tylenol do take that because it is an anti inflammatory. Have you talked to your doctor about a muscle relaxer? I'm not sure if you get sleepy from them or not. None have ever really worked for me until my doctor prescribed Skelaxin, for me it was a great muscle relaxer, if they make you sleep perhaps you could take them at night, it shouldn't knock you out to where you couldn't be woken up should you be needed. Have you tried moist heat on your back a few times a day?

I'm sorry you are feeling so badly. I know after I take care of my mom for a few days I am in tons of pain and can barely walk.

 

[Narrowminded]

Jenny, I've can't take ibu, but I do take muscle relaxers at night when there is less likely a need for me to help. I have taken a half during the day. I also have heat on my back several times a day. I have a bulging disc. It will just take time to heal and longer given being the caregiver. Thank you for all of the suggestions of help. It is awesome knowing that there are friends here with help no matter what the issue.

Hoping you're able to eat better today.

Hugs sue

 

[scaredwifetx]

As we all know from my posts that I have a herniated disk and fractured one of my vertebrates from a fall a couple months ago. I tried everything and nothing worked. A friend told me to drink 2-4 ounces of Aloe Vera juice. George's is taste free. It has worked wonders as well as taking Turmeric Curcumin Extract one per day. I no longer have a back ache for the first time in over a year and no swelling.

ALS sucks and Narrow we know how you feel. Some days are just worse than others. Big hugs!

 

[Narrowminded]

Scared - thank you for the tip on the Aloe. My MIL used to drink it years ago. I do take Tumeric, but not a blend iwth Curcumin. I know it's a good anti-inflammatory. I will see if I can find that Aloe around here. I'm so happy to hear it's worked wonders for your back given a situation that is worse than mine is.

Hugs,

sue

 

[scaredwifetx]

Sue, both are cheaper on amazon

 

[Narrowminded]

My back is getting better. Haven't been on much as I'm trying to get caught up from being down. Today is no exeception and I have a ton on my plate. Thank you everyone for your thoughts, prayers and suggestions. I am keeping all of them together so I can remember for future use.

Headed back to the Chiro today for a last touch up.

Hugs,

Sue

 

[gooseberry]

Sue, massage has helped me also.

 

[Nuts]

My neck and shoulders had been so tight they woke me from the pain for weeks before this trip. Within three days of heading out, my neck and shoulders are relaxed. I have my darling with me, and I still spend a lot of time caring for him, but just being away from the reality of our life and waking each day with expectation and excitement, and my other responsibilities forget for the time being, is wonderful.

Having someone else make the beds and clean the room every day and no cooking to do aren't hurting either.

Becky

 

[Narrowminded]

Becky, I'm happy you are getting some relief being away. A trip would be awesome. No trips for us though, DH can't even stand the chair anymore without movement. And having someone else cook is devine. Enjoy your time away.

Hugs,

Sue

 

[Narrowminded]

The Chiro visit today was a good one, spent some time after talking with the receptionist (also the wife of the other Dr in the practice) I met her years ago when our kids were really young and in gymnastics together. Spent a few minutes telling her the journey to dx of DH (she knew his DX) and where we are in our journey. It was a nice talk. At one point my Dr came up behind me and placed his hand at the small of my back just to make sure I was ok, because this talk happened after treatment was done. I assured him I was fine, that we were just chatting. That one kind gesture has had me teary since. Just that gentle show of support. I miss that so much. Being the strong one all of the time is hard. What I wouldn't give to just to have those strong arms to hold me up and to take this off of my plate or at least share it with me. But, that time is long past.

Sorry, just feeling weepy at the moment.

sue