Multiple Sclerosis (MS) Support Group
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How do you handle loosing yourself one piece at a time??
The last 6-12 months I have been going downhill. slipping loosing myself.
I live in a long term hospital.
When I came here 2.5 yrs ago. I had allot more energy & ability.
I used to stay up in my wheelchair until 9 pm.
I was up, washed & in my chair 9-10 am.
Went to rec therapy in the morning & afternoon.
Then after supper I drove my wheelchair "home" to see my Hubby & fur baby.
I was able to read for hrs & hrs.
I went outside (when it was warm enough)
I volunteered at the sexual assault center. On the crisis line & in the office & fund raisers.
I fed myself, I could write, knit,. crochet, needle point.
I kept myself busy.
I have allot more trouble now.
I get out of bed around 10-11 am get back in bed 4-6 pm.
I have to be fed most days.
I do not get dressed (unless I have an "outside" appointment)
I do not go to rec therapy most days
I do not go home anymore (it has been a yr or close to it.
I have allot of fatigue & spasms
I have trouble with driving my power chair most days I do not leave the unit.
I am getting a new drive system I will get a tray & I will drive my chair with a touch pad.
I just had some cognitiHow do you handle loosing yourself one piece at a time??
The last 6-12 months I have been going downhill. slipping loosing myself.
I live in a long term hospital.
When I came here 2.5 yrs ago. I had allot more energy & ability.
I used to stay up in my wheelchair until 9 pm.
I was up, washed & in my chair 9-10 am.
Went to rec therapy in the morning & afternoon.
Then after supper I drove my wheelchair "home" to see my Hubby & fur baby.
I was able to read for hrs & hrs.
I went outside (when it was warm enough)
I volunteered at the sexual assault center. On the crisis line & in the office & fund raisers.
I fed myself, I could write, knit,. crochet, needle point.
I kept myself busy.
I have allot more trouble now.
I get out of bed around 10-11 am get back in bed 4-6 pm.
I have to be fed most days.
I do not get dressed (unless I have an "outside" appointment)
I do not go to rec therapy most days
I do not go home anymore (it has been a yr or close to it.
I have allot of fatigue & spasms
I have trouble driving my chair
my eyes are very bad lesion in my vision center in my brain
i just had cogitative testing done i lost allot of brain function.
i just do not know how to deal with it all
my memory is very bad.
what would you do?
venting - reaching out- help
The last 6-12 months I have been going downhill. slipping loosing myself.
I live in a long term hospital.
When I came here 2.5 yrs ago. I had allot more energy & ability.
I used to stay up in my wheelchair until 9 pm.
I was up, washed & in my chair 9-10 am.
Went to rec therapy in the morning & afternoon.
Then after supper I drove my wheelchair "home" to see my Hubby & fur baby.
I was able to read for hrs & hrs.
I went outside (when it was warm enough)
I volunteered at the sexual assault center. On the crisis line & in the office & fund raisers.
I fed myself, I could write, knit,. crochet, needle point.
I kept myself busy.
I have allot more trouble now.
I get out of bed around 10-11 am get back in bed 4-6 pm.
I have to be fed most days.
I do not get dressed (unless I have an "outside" appointment)
I do not go to rec therapy most days
I do not go home anymore (it has been a yr or close to it.
I have allot of fatigue & spasms
I have trouble with driving my power chair most days I do not leave the unit.
I am getting a new drive system I will get a tray & I will drive my chair with a touch pad.
I just had some cognitiHow do you handle loosing yourself one piece at a time??
The last 6-12 months I have been going downhill. slipping loosing myself.
I live in a long term hospital.
When I came here 2.5 yrs ago. I had allot more energy & ability.
I used to stay up in my wheelchair until 9 pm.
I was up, washed & in my chair 9-10 am.
Went to rec therapy in the morning & afternoon.
Then after supper I drove my wheelchair "home" to see my Hubby & fur baby.
I was able to read for hrs & hrs.
I went outside (when it was warm enough)
I volunteered at the sexual assault center. On the crisis line & in the office & fund raisers.
I fed myself, I could write, knit,. crochet, needle point.
I kept myself busy.
I have allot more trouble now.
I get out of bed around 10-11 am get back in bed 4-6 pm.
I have to be fed most days.
I do not get dressed (unless I have an "outside" appointment)
I do not go to rec therapy most days
I do not go home anymore (it has been a yr or close to it.
I have allot of fatigue & spasms
I have trouble driving my chair
my eyes are very bad lesion in my vision center in my brain
i just had cogitative testing done i lost allot of brain function.
i just do not know how to deal with it all
my memory is very bad.
what would you do?
venting - reaching out- help
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Usually I get a daily influx of emails on health topics. An article from Dr. Mercola really stood out recently though because it mentioned that fat cells have their own mitochondria. Not only was this the first I'd heard of this, he also mentioned that fat serves a purpose in our metabolism. Another new factoid for me. The bottom line for me was to appreciate that even our fat cells play a...
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I just do not feel well and I really think that it's because I cried yesterday on my way to work about my Aunt who is in the hospital. I don't think that we will have her much longer. She is very frail. Now she needs help eating. So, this is the third time in a year that I felt this way after crying. I think crying releases toxins into my body. I also worked up a sweat at the gym...
Your situation sounds so sad, and I admire that you are still able to communicate via the computer.
You are a brave brave person.
Is there someone where you live who you could talk to? I'm thinking of a counsellor, or similar.
MY PRAYERS ARE WITH YOU
HUGS.....JULIE
I'm not where you are at this point so all I can share with you is how I deal with my slow downhill decent and how my life is slowly changing.
First and foremost is I try... very hard... to keep a positive attitude. This is often easier said than done, but I remind myself daily that what I think about and the type of energy I give out are exactly what comes back to me.
Another thing I do is LAUGH at myself.. a LOT. Laughter is so good for the soul and when we can take a negative and change it in a small way to a positive, I believe we are healing ourselves and our spirit a tiny bit.
The only other things I can offer you is much love, prayers, a virtual (((hug))) and loads of positive energy being sent your way.
I think I would set small daily goals and give myself a ton of grace (knowing my mental and physical limits, I would try to stay positive, but give myself permission to cry too
I think it's always great to have someone to talk to, whether it's in a group session, or just interacting as much as you need. We all need that. Keep posting as much or as often as it helps.
Hugs,
~Lorrie
I have seen your dissention as you have been a member of DS for several years through your posts. I think the idea of creating a goal for yourself daily is a good idea to help you feel like you have accomplished something. Even if it is just staying in the chair past 6:00 one day, that is accomplishment and you should be proud of yourself. Feed yourself another day, that is an accomplishment. Go to Rec Therapy one day - that is another accomplishment. Nothing says you have to do these things every day, but think about what goal you want to accomplish the next day, memorize it, and then the next day work on accomplishing it. The feeling you get should be fulfilling. I do this at work. I write down my goals to accomplish and I feel great when I can cross something off that list.
Also, you have always had an upbeat attitude. Continue to focus on that in your brain. Keep it alive. Having a pity-party is understandable, I think we all have them. But, know that you have to someday pull your boot straps up, just a little. Just attempting to pull yourself out of the funk is an accomplishment.
You should have a therapist available at the hospital to talk to. Ask your case manager or one of the unit supervisors if they can help you connect with one. You really need some professional guidance to help you deal with your losses. I don't know that I would know how to deal with my losses as you have. I know that reaching out to DS friends has been an excellent approach and you have gotten a lot of good comments here. Don't ever stop reaching out, even if it is for the same feelings over and over again. Each time you may get some different responses. I'll be thinking of you and praying for you.