I love this! Having MS doesn't mean you have to stop living your life.
Showing posts with label Multiple Sclerosis. Show all posts
Showing posts with label Multiple Sclerosis. Show all posts
Monday, March 28, 2011
Monday, January 31, 2011
Do I cook or clean?
One of the *fun* things about having MS is never knowing how much energy you're going to have at the end of the day. Until recently, I've been operating under the assumption that I can still do everything. I push myself. In the past month, though, I've noticed that I can't. I have limits. I don't like this, but I'm learning to accept and adapt.
When I get home from work, it's usually my responsibility to cook dinner. My mother is exhausted at the end of school. My brother can't cook, and the other adult living in my home only cooks dinners that come out of a box. While having heated frozen dinners is a nice reprieve on occasion, I prefer to know all of the ingredients in my meals. I'm funny that way. (sidebar: I think I'm beginning to develop a dislike for fast food -- which is a good thing because I used to eat it WAY too much.)
The meals I cook may be simple or complex or time consuming, but once I'm done cooking, I'm usually done. Period. I have nothing left. I'm drained. The day has done me in. Especially if, before I start cooking, I have to run a load of dishes and pots and cups and silverware that has been kindly placed into the sink throughout the day to the point of overflowing but not put into the dishwasher. (There are other two adults in my home all day. Surely one of them can take care of this. Admittedly, half of the time is. But it's not fun when I have to come home to a dirty kitchen that has to be cleaned before I can start cooking.)
Once we've eaten, I just want to get on the computer or watch TV or read, anything that doesn't involve a lot of moving or concentration. How do you explain to someone without MS the inability to put dishes in the dishwasher or wipe the stove and table because you just don't have the energy and all you want to do is sit down. And if you try, you just stand there for minutes with a complete lack of focus (what was I supposed to be doing?), willing yourself to move. And then, if you do get it done, it takes 2-3 times longer than it normally should.
Sometimes, I hate to admit, I pile all the dirty dishes into the sink and let them stay there overnight and put them in the dishwasher in the morning. Other times I push through and just get it done. And then there are days like today, where my Mom has lots of energy left, so she's cooking dinner. I still had to put dishes in the dishwasher when I got home, but since I don't have to cook or clean up, I may be able to do something else with my evening. I have a cabinet that needs organizing, so I may just tackle that tonight.
When I get home from work, it's usually my responsibility to cook dinner. My mother is exhausted at the end of school. My brother can't cook, and the other adult living in my home only cooks dinners that come out of a box. While having heated frozen dinners is a nice reprieve on occasion, I prefer to know all of the ingredients in my meals. I'm funny that way. (sidebar: I think I'm beginning to develop a dislike for fast food -- which is a good thing because I used to eat it WAY too much.)
The meals I cook may be simple or complex or time consuming, but once I'm done cooking, I'm usually done. Period. I have nothing left. I'm drained. The day has done me in. Especially if, before I start cooking, I have to run a load of dishes and pots and cups and silverware that has been kindly placed into the sink throughout the day to the point of overflowing but not put into the dishwasher. (There are other two adults in my home all day. Surely one of them can take care of this. Admittedly, half of the time is. But it's not fun when I have to come home to a dirty kitchen that has to be cleaned before I can start cooking.)
Once we've eaten, I just want to get on the computer or watch TV or read, anything that doesn't involve a lot of moving or concentration. How do you explain to someone without MS the inability to put dishes in the dishwasher or wipe the stove and table because you just don't have the energy and all you want to do is sit down. And if you try, you just stand there for minutes with a complete lack of focus (what was I supposed to be doing?), willing yourself to move. And then, if you do get it done, it takes 2-3 times longer than it normally should.
Sometimes, I hate to admit, I pile all the dirty dishes into the sink and let them stay there overnight and put them in the dishwasher in the morning. Other times I push through and just get it done. And then there are days like today, where my Mom has lots of energy left, so she's cooking dinner. I still had to put dishes in the dishwasher when I got home, but since I don't have to cook or clean up, I may be able to do something else with my evening. I have a cabinet that needs organizing, so I may just tackle that tonight.
Saturday, December 25, 2010
My Bed is My Friend
Every year, my family comes together to celebrate Christmas on Christmas Eve. My oldest younger brother and his family live about 40 minutes away. My youngest younger brother and his son live with me, and my Mom lives beside me. Yesterday, everyone was over at my house (my house isn't very big). The celebration started at 5:00, but I didn't finish getting everything ready until 6:00. My day started at 8:00 in the morning and didn't end until 11:00 at night when everything was cleaned up. It was a long day. It was a great day. But as a person with Multiple Sclerosis, it was a day that did me in.
This morning, Christmas morning, I dragged myself out of bed to watch Sammy open his stocking and gifts from Santa and his Dad and Mom. He's 3-1/2, and it's the first year he really understands Santa and Christmas. And then I went back to bed. I managed to get lunch, but then went back to bed. My Mom (who just had her hip replaced a month ago) came over and made dinner (open roast beef sandwiches and mashed potatoes-yumm!). If you can't tell, my energy level today was ze-ro. Spending fifteen hours on my feet, running around all day was too much. I used to be able to do it, and then do it again the next day. I'm getting old before my time. Thankfully, I had no plans for Christmas, except with my bed.
Sunday, October 24, 2010
6 Month MRI
Friday was that time of the year again. Time to have an MRI.
In July 2008, I switched MS drug therapies. I now take Tysabri, a once-a-month IV, and I'm very happy with it. But it does have it's draw backs. Tysabri is an immunosuppressant, an the largest risk of taking it is contracting PML, a potentially lethal brain infection. While the chance of getting PML is relatively small, it's higher than the general population. The only way to monitor it is through MRI's. So I have one every six months.
The Results: No change. I saw the pictures myself. A bit depressing because I was hoping my body would have at least started healing the existing lesions by now. BUT the good news is that there are no new lesions and there haven't been since I've been on the big T. I can't complain really, because I can still function. I don't have any pain. I don't get too exhausted. There are some limitations, but overall, I'm doing good.
Because I'm doing so well, my Neuro and I talked about increasing the time between Tysabri infusions from once a month to every other month. Tysabri is the most powerful MS medication currently available. Because it's so strong, they're trying to determine if reducing the the number of infusions in those who are doing well will still allow the meds to offer protection while reducing the risk of PML. This decision will, of course, take into consideration the newest recommendations based on the most recent research. So we'll see if there are any changes in protocols over the next six months. We may also change the frequency of my MRI's from every 6 months to once year depending, again, on the potential to get PML based on the newest research.
I'm now "participating" in a study to see if there's a link between having been exposed to the JVC virus (which causes PML) and getting the disease. I say "participating" because it's only a blood draw once a year for three years. But I hope it helps.
I also talked to my Neuro about the new MS pill that was recently approved. I like to keep on top of what's going on with MS. As excited as I am about the advances that are being made, the side effects of this new med is a reason for me to hold off (even thought I have no desire to switch drugs). I mean, if the first time you take the pill, you have to do it in the doctor's office so they can monitor you for SIX hours, well, the risk vs. reward seems a bit skewed to one side.
We also talked about stem cell research, but I think I'll post that discussion in another post. This one has gone on long enough.
In July 2008, I switched MS drug therapies. I now take Tysabri, a once-a-month IV, and I'm very happy with it. But it does have it's draw backs. Tysabri is an immunosuppressant, an the largest risk of taking it is contracting PML, a potentially lethal brain infection. While the chance of getting PML is relatively small, it's higher than the general population. The only way to monitor it is through MRI's. So I have one every six months.
The Results: No change. I saw the pictures myself. A bit depressing because I was hoping my body would have at least started healing the existing lesions by now. BUT the good news is that there are no new lesions and there haven't been since I've been on the big T. I can't complain really, because I can still function. I don't have any pain. I don't get too exhausted. There are some limitations, but overall, I'm doing good.
Because I'm doing so well, my Neuro and I talked about increasing the time between Tysabri infusions from once a month to every other month. Tysabri is the most powerful MS medication currently available. Because it's so strong, they're trying to determine if reducing the the number of infusions in those who are doing well will still allow the meds to offer protection while reducing the risk of PML. This decision will, of course, take into consideration the newest recommendations based on the most recent research. So we'll see if there are any changes in protocols over the next six months. We may also change the frequency of my MRI's from every 6 months to once year depending, again, on the potential to get PML based on the newest research.
I'm now "participating" in a study to see if there's a link between having been exposed to the JVC virus (which causes PML) and getting the disease. I say "participating" because it's only a blood draw once a year for three years. But I hope it helps.
I also talked to my Neuro about the new MS pill that was recently approved. I like to keep on top of what's going on with MS. As excited as I am about the advances that are being made, the side effects of this new med is a reason for me to hold off (even thought I have no desire to switch drugs). I mean, if the first time you take the pill, you have to do it in the doctor's office so they can monitor you for SIX hours, well, the risk vs. reward seems a bit skewed to one side.
We also talked about stem cell research, but I think I'll post that discussion in another post. This one has gone on long enough.
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