Saw this online one day and decided to order it. Not sure if I have the nerve to wear it though.
Tag Archives: life
The thing about this disease is that it is all consuming. For my husband it has taken every part of his life and turned it upside down. He is no longer the same person he was not even close. What people don’t seem to realize is that it is doing that to me too. From strong career woman to washer woman, enforcer, meanie.
He tells me I am mean almost every day. Why? Because I try to keep him safe.
“Give me my keys!” he says “I’m not asking you I’m telling you!” he says. I have to say NO and mean it and he hates me for it.
The other day my uncle sent me a photo of my great grandmother. I showed it to him, he says “you don’t look like her at all” so I tell him that people say I act like her, his reply “so she was a bitch too?” Yep that hurts.
I feel like I let friends down and that they really do not understand how caregiving has consumed my whole life. I had promised to loan my camera to a friend for Sunday and was supposed to drop it off Saturday night. I remembered on Sunday when I was already too far away to do anything about it. She wanted it for a large event, and so she had no camera and had to rely on others for photos. I feel bad and sent her an apology text on Sunday when I realized what I had done. It’s Wednesday there has been no reply. I’m sure she feels I let her down. But I’d love for her to spend a day in my shoes and see the things that are consuming my mind daily and realize how easy it would be to let something like that slip and that it doesn’t mean I don’t value her as a friend or that I don’t think her event was important. I do know it was important, I know she felt let down, and now I feel like I may have lost a friend over something stupid really. I lost track of time on Saturday as I was dealing with so many things at once, dinner, dogs, friends, getting ready for Sunday’s road trip and just battling my usual depression and lack of motivation.
September 6-7 2014 is when this disease took a huge jump forward. From the outside my life looks the same to most people but no one seems to understand that it’s not at all the same. My husband has the judgement of a 4 year old. Everytime I leave him alone for any length of time it is a gamble. In 30 minutes he nearly burned our camper down, what could he do with 4-5 hours while I go to work?
I am working on getting support lined up for my overnight trips I have to go on this fall. Thankfully my sister and her husband are trained caregivers for adults with special needs. And since I have provided countless hours and days of absolutely FREE babysitting for their children I called in the favors and my brother in law will stay with and manage my husband in my absence.
Still not sure what to do about my apparently pissed off friend. All I really want to do is go back to bed and sleep for a few more days.
The turn out seat is installed in our truck and we are currently at a guest house for the night and will be checking into the SCI and MS clinic tomorrow morning at 9am. Tomorrow is sure to be a very long and tiring day for both of us.
Things that I’m hoping for and ASKING for:
- A lift – something to get him back up off the floor should he fall and be unable to assist me with getting back up
- Regular Physical Therapy in our home!
- Cognitive or Speech Therapy or both (he is still struggling to speak)
- Assistance getting his claim fast tracked in NYC at the Regional office.
I’m sure I’ll think of more things as we go along. So three days of HELP is coming up and I am so thankful just to be here. Also loving the guest house where we are staying tonight as they have a handicapped accessible room for us and a lovely guest home with TV for my addicted husband. And DINNER was provided too, I had buffalo chicken mac and cheese, he had some minestrone soup and bread. All for the bargain of $35 per night.
I have had a blog for about 7 years, in the beginning I posted a lot, it was random and silly and mixed in with many posts about having a husband with MS. It was an outlet for me, sometimes I whined, other times I really spoke from the heart.
I intend for this blog to be much more focused. My topics will be MS (multiple sclerosis) and the many ways it can affect a life such as physical disability, cognitive dysfunction, dementia, lots of fun topics all told from my personal perspective. As well I may touch on veterans issues as my husband is service connected and covered by the Veterans Administration. The ongoing struggle for benefits from the VA will be a fun topic to tackle. I will also bring forward some of my past posts that are relevant.
So if you are reading this, thank you. I hope to help other spouses of MS patients as well as spouses of disabled veterans who may be seeking benefits, and hopefully anyone who has ever had to take care of or advocate for someone who they loved who could not do it themselves will find something here.
Hang on it’s bound to be a wild ride.