I found another chat on Twitter today - this one is called MSminds!
Feel free to copy/paste the questions to your own blog, and keep the conversation going :)
Q1) Has MS had an affect on your mental health?
Yes and no. I have always suffered from depression and anxiety, but it definitely has spikes. It hit a huge peak right before my big flare that got me diagnosed. However, I credit my ability to "handle" the situation to my depression - I was so emotionally numbed in mood that I wasn't able to truly internalize the situation. Saved me a lot of pain.
Q2) What has your experience of mental health support from healthcare professionals been like?
Surprisingly good, at least as far as my MS is concerned. My first neurologist asked me if I wanted to be put on an anti-depressant. It was the first time I had ever been asked by a doctor, despite years of reporting issues with depression and anxiety. I initially said no - but knew that I needed to do something. I told her, "Actually... actually yeah, yeah I do need an anti-depressant. Thank you." Best decision I ever made.
Q3) What do you do to boost your mood?
I have started writing a "Positivity Blog," every single day. I include one thing I like about myself, one thing I do well, one thing good about the day, one good thing I'm looking forward to tomorrow. Really is starting to help.
I also am an artist and a musician, and I participate an awful lot in what I call "art therapy."
Q4) Do you use any digital tools or apps to help look after your emotional wellbeing?
My blog! http://itoocanlovemyself.blogspot.com/
Q5) What more could be done to educate MSers about looking after their mental wellbeing?
Let them know that there is nothing scary about medicating for depression/anxiety/etc. I really think my anti-depressant did so much to reduce my stress level that I wonder what was more effective: my anti-depressant, or my disease-modifying-medication (Gilenya).
Thank you all, this is a really important topic! I would be happy to discuss my experience with anti-depressants if anyone needs advice.
Love to all!
MSloan
Showing posts with label fatigue. Show all posts
Showing posts with label fatigue. Show all posts
Wednesday, March 16, 2016
Monday, January 18, 2016
ChatMS 1/18/2016
Hello all!
I didn't do a posting for ChatMS last week because all the questions were about how cold weather affects your MS - and I live in California. I don't have any issues with that, so I couldn't relate to any of the questions.
If you are affected by cold weather, please tell me your story! In my case, I only notice issues when it gets above 95.
This week's ChatMS is another one on symptomology. Please feel free to cut/paste the questions to put on your own blog. Keep the conversation going!
Q1: Over 50% of MSers say they experience sleep problems. Are you part of this statistic?
Abso-freaking-lutely. I can't even count on both hands the number of great nights of sleep I have had in the last few years. Being pregnant compounds this, for sure!
Q2: Sleep issues can involve insomnia, apnea, narcolepsy or restless leg syndrome. Do you experience any of these?
Insomnia is the big one. Mostly, when I wake during the night, I can't fall back asleep. I also have restless leg syndrome, and often feel generally 'uncomfortable' for lack of a better word.
Q3: What symptoms do you experience that disrupt your sleeping habits?
See above - but I also have frequent urination, heartburn, nausea, dizziness. Leg cramps!!!! Not all the time, and thank goodness not all at once. But these issues rear their ugly head on occasion and good luck sleeping through that.
Q4: Not sleeping well can have a negative effect on your well being. Does your sleep affect your daily activities?
Absolutely. I can feel when I haven't gotten a good night's sleep - I am more irritable, less tolerant of annoyances and demanding people, and my depression spikes. I do not believe it contributes to my MS fatigue, which is a beast in and of itself.
Q5: Fatigue tends to a common symptom of MS. Do you believe this is this due to your disrupted sleep?
Oh, the fatigue. The fatigue, fatigue, fatigue. Other than pregnancy I cannot imagine anyone really experiencing fatigue the way that MS gives you fatigue.
I have had depression and anxiety for many years - since I was a pre-teen. Depression makes you tired, hopeless, keeps you in bed because you don't want to get out of bed. It's an entirely different feeling from having a cold, having the flu, being 'sick' and not having the strength to get up. MS fatigue is an incredible, overwhelming sensation - not of "I don't want to get up," or even "I don't feel well enough to get up." It is a can NOT. I can NOT get out of bed. I can NOT get off the couch. I am stuck right where I am.
I had a relatively full night's sleep early on in my MS diagnosis days, not when it first began but when I was actually diagnosed. The next day I could not get out of bed. I nearly wet the bed because of this fatigue. I was sitting on my couch and felt what can only be described as a heaviness. I couldn't get up to eat. I couldn't pick up my computer or my phone. I just sat there, at the mercy of my cats. Exhausted, but not tired - I didn't sleep all day. And then I finally understood why 'fatigue,' as one of the most common symptoms of MS, is grossly misunderstood.
Q6: Have you talked to your neuro about your sleeping habits?
Nah - I didn't think she could do anything about it at the beginning, and I had been dealing with so many issues with my sleep habits that adding MS to the causes wasn't going to make too much of a difference.
Q7: Are you on any meds to help you have a good nights rest? Which ones?
Nope.
Q8: If you have extreme insomnia what do you do to help you fall asleep?
Flip my pillow over. Get up and go to the bathroom, roll my husband over so he'll stop snoring. Read something very boring. Climax. Deep breathing, in through the nose and out through the mouth. Clench all my muscles in systematic patterns and release. I have yet to find the perfect cure to insomnia but I keep trying!
Q9: What tips/tricks would you give to other MSers to help them with their disrupted sleeping patterns due to MS?
Keep a log of when you get up; maybe there is a cycle to it. I have a definite cycle - 12:45 PM, 2 AM, 4 AM, 5:15 AM, 6:10 AM. If I get up at 3 AM, it's usually because of my cat because that's HIS cycle. It might not help you fall back asleep right away but it's relatively amusing! And know you aren't alone. Keep a bottle of water by the bed and practice good breathing techniques.
I didn't do a posting for ChatMS last week because all the questions were about how cold weather affects your MS - and I live in California. I don't have any issues with that, so I couldn't relate to any of the questions.
If you are affected by cold weather, please tell me your story! In my case, I only notice issues when it gets above 95.
This week's ChatMS is another one on symptomology. Please feel free to cut/paste the questions to put on your own blog. Keep the conversation going!
Q1: Over 50% of MSers say they experience sleep problems. Are you part of this statistic?
Abso-freaking-lutely. I can't even count on both hands the number of great nights of sleep I have had in the last few years. Being pregnant compounds this, for sure!
Q2: Sleep issues can involve insomnia, apnea, narcolepsy or restless leg syndrome. Do you experience any of these?
Insomnia is the big one. Mostly, when I wake during the night, I can't fall back asleep. I also have restless leg syndrome, and often feel generally 'uncomfortable' for lack of a better word.
Q3: What symptoms do you experience that disrupt your sleeping habits?
See above - but I also have frequent urination, heartburn, nausea, dizziness. Leg cramps!!!! Not all the time, and thank goodness not all at once. But these issues rear their ugly head on occasion and good luck sleeping through that.
Q4: Not sleeping well can have a negative effect on your well being. Does your sleep affect your daily activities?
Absolutely. I can feel when I haven't gotten a good night's sleep - I am more irritable, less tolerant of annoyances and demanding people, and my depression spikes. I do not believe it contributes to my MS fatigue, which is a beast in and of itself.
Q5: Fatigue tends to a common symptom of MS. Do you believe this is this due to your disrupted sleep?
Oh, the fatigue. The fatigue, fatigue, fatigue. Other than pregnancy I cannot imagine anyone really experiencing fatigue the way that MS gives you fatigue.
I have had depression and anxiety for many years - since I was a pre-teen. Depression makes you tired, hopeless, keeps you in bed because you don't want to get out of bed. It's an entirely different feeling from having a cold, having the flu, being 'sick' and not having the strength to get up. MS fatigue is an incredible, overwhelming sensation - not of "I don't want to get up," or even "I don't feel well enough to get up." It is a can NOT. I can NOT get out of bed. I can NOT get off the couch. I am stuck right where I am.
I had a relatively full night's sleep early on in my MS diagnosis days, not when it first began but when I was actually diagnosed. The next day I could not get out of bed. I nearly wet the bed because of this fatigue. I was sitting on my couch and felt what can only be described as a heaviness. I couldn't get up to eat. I couldn't pick up my computer or my phone. I just sat there, at the mercy of my cats. Exhausted, but not tired - I didn't sleep all day. And then I finally understood why 'fatigue,' as one of the most common symptoms of MS, is grossly misunderstood.
Q6: Have you talked to your neuro about your sleeping habits?
Nah - I didn't think she could do anything about it at the beginning, and I had been dealing with so many issues with my sleep habits that adding MS to the causes wasn't going to make too much of a difference.
Q7: Are you on any meds to help you have a good nights rest? Which ones?
Nope.
Q8: If you have extreme insomnia what do you do to help you fall asleep?
Flip my pillow over. Get up and go to the bathroom, roll my husband over so he'll stop snoring. Read something very boring. Climax. Deep breathing, in through the nose and out through the mouth. Clench all my muscles in systematic patterns and release. I have yet to find the perfect cure to insomnia but I keep trying!
Q9: What tips/tricks would you give to other MSers to help them with their disrupted sleeping patterns due to MS?
Keep a log of when you get up; maybe there is a cycle to it. I have a definite cycle - 12:45 PM, 2 AM, 4 AM, 5:15 AM, 6:10 AM. If I get up at 3 AM, it's usually because of my cat because that's HIS cycle. It might not help you fall back asleep right away but it's relatively amusing! And know you aren't alone. Keep a bottle of water by the bed and practice good breathing techniques.
Saturday, October 31, 2015
Baby Blanket
I started a baby blanket last night! Well, I attempted to, until I was hit with a wave of fatigue so hard I thought I was going to pass out, while sitting down! I had just enough energy to take my prenatal and crawl into bed.
Where I proceeded to lie awake for several hours. AUGH! I can't be alone in this. I feel like a Nirvana lyric.
I did, however, 'wake up' this morning and went for a walk to the local donut shop. Cake donut with sprinkles - mm! I am still not gaining anywhere near enough weight for my pregnancy, in fact I am losing weight, so I'm trying to remember to eat during the day. I have never been successful at putting on weight when I want to. Stop bitching - I'm tall and have skinny genes, so this has always been more of a 'bean pole' struggle than you might think.
My baby blanket is a light teal, gray, and yellow, as we don't know the sex of the baby yet and I like the colors - it will go well with our Pooh themed nursery! I like my glider, I especially like that while I'm crocheting I am not able to focus on the numbness in my feet. It seems to be the worst at night, gets better at about 11 AM, and then fluctuates for the rest of the day until about 9 PM when it gets really bad again. Thus far, it has not creeped up my legs much, and I'm taking that as a good sign!
Neurologist decided not to do an MRI due to 'unknown risk to the fetus,' I was under the impression that an MRI was safe during pregnancy but I will defer to his judgment unless something really gets worse.
Enough for now, back to crocheting and watching "Moonrise Kingdom." I love Wes Anderson movies, don't you? Over and out -
MSloan
Where I proceeded to lie awake for several hours. AUGH! I can't be alone in this. I feel like a Nirvana lyric.
I did, however, 'wake up' this morning and went for a walk to the local donut shop. Cake donut with sprinkles - mm! I am still not gaining anywhere near enough weight for my pregnancy, in fact I am losing weight, so I'm trying to remember to eat during the day. I have never been successful at putting on weight when I want to. Stop bitching - I'm tall and have skinny genes, so this has always been more of a 'bean pole' struggle than you might think.
My baby blanket is a light teal, gray, and yellow, as we don't know the sex of the baby yet and I like the colors - it will go well with our Pooh themed nursery! I like my glider, I especially like that while I'm crocheting I am not able to focus on the numbness in my feet. It seems to be the worst at night, gets better at about 11 AM, and then fluctuates for the rest of the day until about 9 PM when it gets really bad again. Thus far, it has not creeped up my legs much, and I'm taking that as a good sign!
Neurologist decided not to do an MRI due to 'unknown risk to the fetus,' I was under the impression that an MRI was safe during pregnancy but I will defer to his judgment unless something really gets worse.
Enough for now, back to crocheting and watching "Moonrise Kingdom." I love Wes Anderson movies, don't you? Over and out -
MSloan
Thursday, October 29, 2015
Feeling Low
Sometimes I feel like I'm climbing a mountain with no summit and no oxygen. I keep climbing and climbing, but I just can't get there. I am frozen with cold. I can't feel my feet. I can't feel my fingers. But I keep climbing anyway.
What am I doing this for?
Looking in the mirror lately is just that much more difficult. I'm breaking out and the acne won't stop. My hair is a disaster. I want to get it cut but I can't afford it, and I really can't afford the maintenance trims on a short cut right now. I am not gaining enough weight, which is stressing me out. The stress makes my MS worse. That stresses me out even more. So I don't eat, because I'm stressed, and have no appetite. So I'm not gaining enough weight. Which stresses me out.
Forget the mountain. I'm on a bridge that goes in circles, precariously over a disastrous cavern, with no end in sight.
I asked him to do a single thing, load the dishwasher, three days ago. He keeps telling me how tired he is. I am trying not to be insulted. But then he mentions it again. Talks about it when he's home from work. Complains when he gets up in the morning. "I'm tired." I'm sorry you're tired. I'm pregnant and have MS, work full time, and then have to take care of this house when I come home. You stayed home for 2 days this week and cleaned not a single inch of this apartment. We BOTH live here. Why is it only my job? I don't complain about being tired any more. I have been tired since February 2014. I've been exhausted beyond belief for the last three months. I can't sleep through the night because I have to get up three times to pee, and when I get up, my brain doesn't shut off. Baby hasn't even arrived yet and I'm pulling all-nighters while you push your huge comforter onto my side of the bed, where I already have limited real estate.
So you're tired? Climb the damn mountain. You'll know the real meaning of exhaustion then, too.
Sorry. I know he's doing his best. I can't fault him for everything. But it doesn't feel like a nice thing to do the dishes when I have to force you into doing them. I'd rather do it myself, when I know it will get done, and I know they will be clean, instead of having to redo them tomorrow when you're gone at yet ANOTHER camping trip with the scouts and I'm home alone. AGAIN. To clean and take care of the house. AGAIN. How the hell can I start nesting if you won't help me? I can't keep up.
I'm tired.
MSloan
What am I doing this for?
Looking in the mirror lately is just that much more difficult. I'm breaking out and the acne won't stop. My hair is a disaster. I want to get it cut but I can't afford it, and I really can't afford the maintenance trims on a short cut right now. I am not gaining enough weight, which is stressing me out. The stress makes my MS worse. That stresses me out even more. So I don't eat, because I'm stressed, and have no appetite. So I'm not gaining enough weight. Which stresses me out.
Forget the mountain. I'm on a bridge that goes in circles, precariously over a disastrous cavern, with no end in sight.
I asked him to do a single thing, load the dishwasher, three days ago. He keeps telling me how tired he is. I am trying not to be insulted. But then he mentions it again. Talks about it when he's home from work. Complains when he gets up in the morning. "I'm tired." I'm sorry you're tired. I'm pregnant and have MS, work full time, and then have to take care of this house when I come home. You stayed home for 2 days this week and cleaned not a single inch of this apartment. We BOTH live here. Why is it only my job? I don't complain about being tired any more. I have been tired since February 2014. I've been exhausted beyond belief for the last three months. I can't sleep through the night because I have to get up three times to pee, and when I get up, my brain doesn't shut off. Baby hasn't even arrived yet and I'm pulling all-nighters while you push your huge comforter onto my side of the bed, where I already have limited real estate.
So you're tired? Climb the damn mountain. You'll know the real meaning of exhaustion then, too.
Sorry. I know he's doing his best. I can't fault him for everything. But it doesn't feel like a nice thing to do the dishes when I have to force you into doing them. I'd rather do it myself, when I know it will get done, and I know they will be clean, instead of having to redo them tomorrow when you're gone at yet ANOTHER camping trip with the scouts and I'm home alone. AGAIN. To clean and take care of the house. AGAIN. How the hell can I start nesting if you won't help me? I can't keep up.
I'm tired.
MSloan
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