Changes some good some not so good
Things are OK. I have noticed improvement for awhile, I was the best I have been in 10 months. With movement, sensation, & strength. In physio I started with 10 min's & doing around 5 min's myslef in gear 0, distance about .5 Km. Today I did 13 min's doing all of it myself in gear 1, distance 2.2 Km. My hands have slowly gotten stronger but it seems like they will not have the strength that I once had. My bowels have woken up, I now can go like a reg person.
On the down side I am in allot of pain. So much I have not been sleeping much for almost a week. I have been sleeping 2-3 hrs a night. When the numbness left the pain I used to be in came back. It is hard to believe I lived in this much pain for 20 yrs. It feels like boiling hot water being poured down my back, hips & legs. My doc started me on a new pain med, I hope it helps soon, I was told I had to wait until it gets into my system & I was on a high enough dose. They start you on a small dose & slowly work your way up. I had to stop some activities b/c of pain. My back is too sore to chochet for long & my fingers ache for a day, so I gave it up for awhile.
My Hubby is bringing me a sm stand & a kettle & tea things. I will now be able to make tea & coffee in my room. I like herbal tea but it is a pain to ask a nurse to make my tea all of the time. I have the kettle here now but it has to go to maitence to make sure it works right (I hope so it is bran new) Bruce is bringing the stand tomorrow with all of the tea things.
It is funny how doing things for yourself makes you feel so much better. Being able to make my own tea when I want a cup will be great.
I started to go home a day a week. I needed to spend some time there. It seemed so foren to me. So I am going to start to go home twice a week for 6-9 hrs. I do not want home to become a strange place.
I talked to my SW about going home for good. It seems that it will take forever. Allot has to happen. I am going to have a family meeting to discuss it. The end of Jan. that seems like a long time to wait. I asked if they could do the home assessment sooner then that. I hope that they can. They have an OT meet me at home to see what equipment I need, then try to find the funding. They will also do a nursing assessment to see what nursing I will need & how often. I am fortunate to be in a program that funds my personal care. This way I get to hire who I like, although it is sometimes hard to find enough girls. They will go through all of the care that I need. Once everything is in place I will start to go home on weekends (most likely not before april) once I get used to weekends & they are going well, three day weekends plus home for a day during the week. Slowly going home more & more to make sure I can make it at home. Make sure my care is going well & such. Looking forward to that so is my Hubby.
On the down side I am in allot of pain. So much I have not been sleeping much for almost a week. I have been sleeping 2-3 hrs a night. When the numbness left the pain I used to be in came back. It is hard to believe I lived in this much pain for 20 yrs. It feels like boiling hot water being poured down my back, hips & legs. My doc started me on a new pain med, I hope it helps soon, I was told I had to wait until it gets into my system & I was on a high enough dose. They start you on a small dose & slowly work your way up. I had to stop some activities b/c of pain. My back is too sore to chochet for long & my fingers ache for a day, so I gave it up for awhile.
My Hubby is bringing me a sm stand & a kettle & tea things. I will now be able to make tea & coffee in my room. I like herbal tea but it is a pain to ask a nurse to make my tea all of the time. I have the kettle here now but it has to go to maitence to make sure it works right (I hope so it is bran new) Bruce is bringing the stand tomorrow with all of the tea things.
It is funny how doing things for yourself makes you feel so much better. Being able to make my own tea when I want a cup will be great.
I started to go home a day a week. I needed to spend some time there. It seemed so foren to me. So I am going to start to go home twice a week for 6-9 hrs. I do not want home to become a strange place.
I talked to my SW about going home for good. It seems that it will take forever. Allot has to happen. I am going to have a family meeting to discuss it. The end of Jan. that seems like a long time to wait. I asked if they could do the home assessment sooner then that. I hope that they can. They have an OT meet me at home to see what equipment I need, then try to find the funding. They will also do a nursing assessment to see what nursing I will need & how often. I am fortunate to be in a program that funds my personal care. This way I get to hire who I like, although it is sometimes hard to find enough girls. They will go through all of the care that I need. Once everything is in place I will start to go home on weekends (most likely not before april) once I get used to weekends & they are going well, three day weekends plus home for a day during the week. Slowly going home more & more to make sure I can make it at home. Make sure my care is going well & such. Looking forward to that so is my Hubby.
Replies
Sounds like you are making great progress! Hopefully the pain will be under control. What a wonderful thing that you get to come home for a bit. I\'m so thankful that you have worked so hard and are seeing your accomplishments.
It seems like things have really turned around for you Kayce! It sounds like you are making excellent progress, I\'m so happy for you.
On your pain, I take pain medications and had to find the right \"cocktail\". For me, it took a couple of months, and now I\'m still not totally controlled. I tried smoking pot a couple of times last month or so, and it really helped me out. My doctor didn\'t want to hear that, but I told him my pain was not completely under control and I was looking for something else and that is why I smoked. He gave me a prescription for Marinol. I haven\'t picked up the script yet and will be anxious to see what it does. But, don\'t get discouraged, work with the PMS and be open to try different meds. I take Opana IR and ER daily. The IR is time released, I take 40 mg. twice a day and the ER is immediate release I can take up to three times a day. It works for me.
Good to hear your going home is working out for you. I know you are anxious to be there more, and it will happen. You just need to make sure that everything there is right for you. I\'m glad to hear you can go to the bathroom too! That is a great accomplisment in itself!
Making tea for yourself? That sounds cool. I have been making iced tea now every day for the past week. I enjoy hot and cold tea and drink it all through the day. Yes, doin something fo yourself does feel good and making tea for yourself sounds like a good start!
Glad to hear things are going so well for you. Lynne
It\'s good to have someone do things for you when you absolutely can\'t but nobody can do things exactly the way you do. I\'m glad you will be able to enjoy your tea the way you want to now. A little home away from home as they say. Hang in there with the pain and hopefully you will find the right dose sooner rather than later and be all comfy with a nice cup of tea in your own favorite chair at home with Bruce. Gentle hugs, Linda
My prayers are with you for a speedy recovery, I guess nothing comes fast with MS. I just started my copaxone yesterday for the first time and I just wanted to thank you for your support. It went really well and today will be my first time on my own without a nurse so hope I do ok. I\'m sorry for your struggles, as I learn more about MS, I become more terrified of the outcome. I pray that you get stronger every day. sending many hugs your way oxox
Hey Kayce,
Hang in there mate, sorry to hear about your pain, hope you can find a med which will help you manage this. but on the bright side so glad you are inching your way ever so closely to making your home a home once again.
You are a true fighter and an inspiration to others.
wishing you continued success
Richard