Tag: MS

Feeling Lost in the Desert and Wishing It Was Dessert

It seems the other medical issue that could also explain Hubby’s symptoms is not in play. It looks like we’re back to the possibility of MS and his next neurology appointment is the week before Thanksgiving. If a test is recommended or ordered, we will insist that it be done soon. We are now at two years of not knowing what’s wrong.

Since February of this year I do nearly everything. He does the bills and he will struggle to the kitchen for another cup of coffee so as not to ask me to do it. I buy pods so he can do it himself since his hands tingle and he can’t trust his grip.

I think I’m afraid of the unknown. I’m so tired of not knowing what this is. He feels the same. We’ve made a commitment to be totally honest in how we feel. I know he hates not being able to help. Sometimes I need to cry and I’ve avoided doing it in front of him. I won’t do that any longer. I’ll cry when I need to.

We’ve been married just under 3 1/2 years. Most of our married life has been dealing with this. We no longer go to his hometown to tour a tall ship, attend parades, attend summer concerts on the lawn. We didn’t even make it next door when our neighbor had his end of summer party. I go to the bank, the store and church. I try to get him to his Mom’s once a week. Otherwise, we go out for doctor appointments. That’s our new normal.

He wonders if a wheelchair is in his future and frets it’s something else for me to deal with. I say we wait and see what the diagnosis is and what the specialist recommends.

I last saw my family in mid-July 2018. Mom is 87 years old. Two siblings are dealing with “early” cancer. I miss my son.

I don’t have friends here. I don’t get out. I’ll chat with ladies at church when I am able to go but I don’t have friends. I just feel so alone and isolated. I love my husband. I love my family. I pray and ask others to pray for us. Just seems like an endless journey and we don’t even know what the destination is.

Feeling so lost and alone but not quite depressed. Discouraged.

Betwixt and Between

Still a rough year. Still no diagnosis. Neurologist says it’s probably multiple sclerosis. Husband is not convinced but still thinks it’s a demyelinating disease of some sort. He wobbles when he walks. The bad discs he has are not in play apparently.

I’ve not seen my family in nearly 14 months. My son will be 5 1/2 hours away for just over a week but won’t be able to stop even for a short visit. So much going on back home and I can’t help. I miss them so much.

We didn’t even make it to his sister’s for a bbq. He had no energy at all today. I’m just down and that makes him sad also. It’s not his fault. He’s also sad because his pain is somewhere around an 8.

If I cry I try to do it when he’s already in bed or if I’m mowing our acre. Mowing on the tractor remains great therapy. I pray often. I’m just weary.

I can’t keep up with what I want to get done. Every time I get the yard somewhat straight, another tree or limbs fall. It’s never ending. I guess I’m becoming more like Mom and Grandma. I’d rather work outside.

I want answers and I want them a year ago. I’m tired of not knowing. I like to know what I’m facing so I can gather my resources. In the meantime I journal and I joined an online MS support group even though we don’t yet know if it’s MS.

I now have Medicare. Time to take care of myself and see about joining a gym that offers Silver Sneakers so I can maintain my health.

Prayers are very much appreciated.