My shrink said I need to let the anger out somehow. I get so angry when normal people complain about being sick. Or complain about other problems that are really nothing [compared to a degenerative disease].
I feel like saying, "Oh, you think your flu is bad? Imagine if your head felt like that every day--and you still went to work."
One person really bugs me sometimes. I know that he does not mean to, but he does. He says that I can tell him how I am doing, but I feel like I cannot. I do not like to complain in general, and definitely not if I do not talk with a person much.
Here is what bugs me: You look a lot better. You seem better today. You sound better. You seem like you feel okay today.
Here is the deal: I usually am not better. I am usually busting my butt to put on the Normal Show.
And if I am better, it is not much better, and it probably will not last long.
When I hear that I seem better, it ticks me off. It makes me feel sad. It invalidates everything I am going through. And what can I say? "Well, actually..."
I try to tell myself that it is just ignorance, not something that a person is doing to hurt me. It does not help very much, though.
Oh, right, I was letting it out.
That makes me really annoyed when I hear it. I have tried to educate that person, but I guess it was not enough. It takes so much time and effort to get people to understand this. I do not know whether it is always worth the effort or how to tell when it is. I do not have effort to spare.
Showing posts with label but you look so good. Show all posts
Showing posts with label but you look so good. Show all posts
Saturday, November 17, 2012
Saturday, August 25, 2012
30 Things About My Invisible Illness You May Not Know
I got this meme from the Invisible Illness Week website. Invisible Illness Week is in September, but I found the meme this week, so I am doing it now.
1. The illness I live with is: Multiple Sclerosis
2. I was diagnosed with it in the year: 2011
3. But I had symptoms since: 2007 (or earlier?)
4. The biggest adjustment I’ve had to make is: Doing much less--working less, going out less, involved in church less
5. Most people assume: I am feeling good, because I look good
6. The hardest part about mornings are: Getting out of the house on time. I need breaks due to fatigue, and I often forget what I am doing due to cognitive impairment.
7. My favorite medical TV show is: Grey's Anatomy
8. A gadget I couldn’t live without is: My laptop (I'm not an alien)
9. The hardest part about nights are: Trying to sleep--my brain wakes me up frequently. Sometimes I wake up because the pain is bad, but most of the time it is for no apparent reason.
10. Each day I take __ pills & vitamins. 30-35 pills/vitamins, 1 intramuscular shot every week, and 1 subcutaneous shot every month. In the 24 hours surrounding my shot, I take an additional 20 or so pills--gosh, upwards of 50 pills in 24 hours! That cannot be good.
11. Regarding alternative treatments I: I am totally interested. I tend to research them and look for studies, but I will try pretty much anything. I have tried Reiki, yoga, and massage, and some of the supplements are alternative treatments. I wish I had the money to do those things enough that they would help me.
12. If I had to choose between an invisible illness or visible I would choose: Hard one! At least with a visible illness people do not expect you to do everything. But with an invisible illness, people at work do not know. I guess invisible for now.
13. Regarding working and career: I am totally stressed out, wondering when I will have to quit. People with MS work an average of eight years after the diagnosis. There is no way I will have enough money to support myself in retirement beginning seven years from now.
14. People would be surprised to know: What MS fatigue feels like. That I am in pain every minute of every day. That I worsen rapidly in temperatures above 74 degrees.
15. The hardest thing to accept about my new reality has been: That I cannot do the things I like to do or plan to do. That plans can change any minute, because I never know what I will feel like in the next hour, much less the next day.
16. Something I never thought I could do with my illness that I did was: Yoga! And physical therapy.
17. The commercials about my illness: Are practically nonexistent, but I do see online ads for people who do everything they did before, because of such-and-such medicine. Whatever! Those people are rare.
18. Something I really miss doing since I was diagnosed is: Skiing more than three turns at a time. Ski for more than 20 minutes without a long break.
19. It was really hard to have to give up: Hours at work, because I needed the money. And spending time outside during the spring/summer/fall.
20. A new hobby I have taken up since my diagnosis is: Yoga
21. If I could have one day of feeling normal again I would: Ski all day!
22. My illness has taught me: That you do not always get what you pray for, and sometimes really bad things happen even when you try to do everything right.
23. Want to know a secret? One thing people say that gets under my skin is: "You look great, you must be feeling better," and "I love it when you smile, you should do that more."
24. But I love it when people: Ask how I am doing and seem like they are ready to listen to whatever answer I give. And when people learn about MS and try to understand what I am going through.
25. My favorite motto, scripture, quote that gets me through tough times is: 3 Nephi 13: 28-30
26. When someone is diagnosed I’d like to tell them: Go to an MS specialist to manage your care, not just any neurologist. And after about a month of initial anxiety, learn everything you can about your disease. No one is going to care about your health as much as you will.
27. Something that has surprised me about living with an illness is: How unpredictable each day is.
28. The nicest thing someone did for me when I wasn’t feeling well was: Listen
29. I’m involved with Invisible Illness Week because: I have an invisible illness, and I would like people to learn about it.
30. The fact that you read this list makes me feel: Touched.
1. The illness I live with is: Multiple Sclerosis
2. I was diagnosed with it in the year: 2011
3. But I had symptoms since: 2007 (or earlier?)
4. The biggest adjustment I’ve had to make is: Doing much less--working less, going out less, involved in church less
5. Most people assume: I am feeling good, because I look good
6. The hardest part about mornings are: Getting out of the house on time. I need breaks due to fatigue, and I often forget what I am doing due to cognitive impairment.
7. My favorite medical TV show is: Grey's Anatomy
8. A gadget I couldn’t live without is: My laptop (I'm not an alien)
9. The hardest part about nights are: Trying to sleep--my brain wakes me up frequently. Sometimes I wake up because the pain is bad, but most of the time it is for no apparent reason.
10. Each day I take __ pills & vitamins. 30-35 pills/vitamins, 1 intramuscular shot every week, and 1 subcutaneous shot every month. In the 24 hours surrounding my shot, I take an additional 20 or so pills--gosh, upwards of 50 pills in 24 hours! That cannot be good.
11. Regarding alternative treatments I: I am totally interested. I tend to research them and look for studies, but I will try pretty much anything. I have tried Reiki, yoga, and massage, and some of the supplements are alternative treatments. I wish I had the money to do those things enough that they would help me.
12. If I had to choose between an invisible illness or visible I would choose: Hard one! At least with a visible illness people do not expect you to do everything. But with an invisible illness, people at work do not know. I guess invisible for now.
13. Regarding working and career: I am totally stressed out, wondering when I will have to quit. People with MS work an average of eight years after the diagnosis. There is no way I will have enough money to support myself in retirement beginning seven years from now.
14. People would be surprised to know: What MS fatigue feels like. That I am in pain every minute of every day. That I worsen rapidly in temperatures above 74 degrees.
15. The hardest thing to accept about my new reality has been: That I cannot do the things I like to do or plan to do. That plans can change any minute, because I never know what I will feel like in the next hour, much less the next day.
16. Something I never thought I could do with my illness that I did was: Yoga! And physical therapy.
17. The commercials about my illness: Are practically nonexistent, but I do see online ads for people who do everything they did before, because of such-and-such medicine. Whatever! Those people are rare.
18. Something I really miss doing since I was diagnosed is: Skiing more than three turns at a time. Ski for more than 20 minutes without a long break.
19. It was really hard to have to give up: Hours at work, because I needed the money. And spending time outside during the spring/summer/fall.
20. A new hobby I have taken up since my diagnosis is: Yoga
21. If I could have one day of feeling normal again I would: Ski all day!
22. My illness has taught me: That you do not always get what you pray for, and sometimes really bad things happen even when you try to do everything right.
23. Want to know a secret? One thing people say that gets under my skin is: "You look great, you must be feeling better," and "I love it when you smile, you should do that more."
24. But I love it when people: Ask how I am doing and seem like they are ready to listen to whatever answer I give. And when people learn about MS and try to understand what I am going through.
25. My favorite motto, scripture, quote that gets me through tough times is: 3 Nephi 13: 28-30
And why take ye thought for raiment? Consider the alilies of the field how they grow; they toil not, neither do they spin;
And yet I say unto you, that even Solomon, in all his glory, was not arrayed like one of these.
Wherefore, if God so clothe the grass of the field, which today is, and tomorrow is cast into the oven, even so will he clothe you, if ye are not of little faith.
26. When someone is diagnosed I’d like to tell them: Go to an MS specialist to manage your care, not just any neurologist. And after about a month of initial anxiety, learn everything you can about your disease. No one is going to care about your health as much as you will.
27. Something that has surprised me about living with an illness is: How unpredictable each day is.
28. The nicest thing someone did for me when I wasn’t feeling well was: Listen
29. I’m involved with Invisible Illness Week because: I have an invisible illness, and I would like people to learn about it.
30. The fact that you read this list makes me feel: Touched.
Thursday, December 29, 2011
Great Day
I did not have much pain today! And I sat a lot, working on my laptop on the couch--usually sitting increases my nerve pain and dysesthetic pain. I will say that I got totally worn out by a brief trip to the grocery store and took a good 30-45 minutes to recover. But then I had a wonderful evening playing games with friends.
I forgot to mention that I had another "But you look so good" from a family friend the other day. If I had a nickel every time...
Sensory:
I forgot to mention that I had another "But you look so good" from a family friend the other day. If I had a nickel every time...
Sensory:
-Pins and needles: 1, although it does get bad when I try to put my feet up, such as resting them on the coffee table
-Tingles: 0
-Dysesthetic pain: 1
-Paresthesias: 0
-Numbness: 2
-Vision: 3
-Nerve pain: 1
-Hearing: 1, just a bit this morning
Motor:
-Walking: 1, definitely getting pigeon toed. I think I need to see a PT.
-Sore muscles: 1
-Fine motor: 1, clumsy, dropping things
-Weak muscles: 4
-Spasticity: 3
Cognitive:
-Processing: 2, expressive language is rough sometimes--dysfluent in a cluttering way
-Memory: 1
-Attention: 0
-Confusion: 0
General:
-Fatigue: 4
-Balance: 2, still balance checking on walls, lol
-Sleep: 1
-Bladder: 0
-Proprioception: 0
-Swallowing: 1, I guess I will add this. Ugh, another thing to rate. Well, I definitely was having problems, especially this evening. Drink, cough. Drink, cough. I have had swallowing problems off and on since this whole thing began at the end of May. It was one of the first symptoms. I also had swallowing problems two years ago, when I was recovering from gallbladder surgery.
-A: 0
-B: 0
Emotions: Anger is the word of the day. My fuse was short. It didn't help that my sister did something she knew would bother me and said she would not do... contractors were not willing to check out an area I was concerned about... I had three separate arguments with a friend because she misunderstood and would not listen to my explanation... and collections called. Not for me; I field calls for a friend. There was a misunderstanding about a hospital bill that was paid on time but not entered in their system. Anyway, it was a rough few hours with all that. I may have overreacted to the collections idiot. Who was totally inappropriate, snapping: "Look, it is an inconvenience for me to have to call you about $25." And a sarcastic: "Wow, you paid it, congratulations." And the best one: "You get what you give." See why I spat fire and demanded to speak with his supervisor?
Friday, December 9, 2011
Long Day
Around 10:00 last night, I found out that I was giving a presentation at 10:00 am today. Yikes! And that I would have half an hour for what is usually a two-hour presentation. Double yikes. So I stayed up until midnight editing my powerpoint.
Nevertheless, I had a great day. I had very little pain in the morning, but then it came back. My energy level was decent; I did not hit a wall until around 6:00 pm. Just vegging since then--ah the exciting Friday night of a single woman.
Here is the crazy Catch 22 I am in right now: If I sit, my dysesthetic pain gets bad in my whole left leg/foot. If I stand or walk, the dysesthetic pain and pins and needles in both of my feet get bad.
I increased the gabapentin by 300 mg yesterday and today. Tomorrow and Sunday 600 mg increase... etc. No change so far, unless you count the good morning. I suppose that was just chance.
Oh! I got another "You look so good" last night. MS sucks.
Yesterday a friend advised me to have a story ready in case someone from work sees me using the loser scooter at Target or using my cane. Hm. Good thinking.
Yesterday a friend advised me to have a story ready in case someone from work sees me using the loser scooter at Target or using my cane. Hm. Good thinking.
Sensory:
-Pins and needles: 5
-Tingles: 0
-Dysesthetic pain: 7
-Paresthesias: 2, quite a few random buzzies, prickles, and pinches
-Numbness: 2
-Vision: 2
-Nerve pain: 6
-Hearing: 0
Motor:
-Walking: 2, balance, some stiffness
-Sore muscles:
-Fine motor: 3
-Weak muscles:
-Spasticity: 3
Cognitive:
-Language processing: 1
-Memory: 1
-Attention: 1
-Confusion: 1
General:
-Fatigue: 4
-Balance: 3, I had so much trouble walking around an "old town" area nearby. The little town is built on a grade, and the shops have steps and are multi-level. Like two inches up to the dining room area, a step down into the front area--they are in old homes. I had a lot of balance checks, and walking downhill was difficult.
-Sleep: 6, because I got less than six hours--but I slept DEAD. Did not wake once.
-Bladder: 1
-Proprioception: 1
Emotions: I am too tired to remember.
Monday, November 21, 2011
Not a Low-Pain Day
I seriously think that my body overreacts to changes in barometric pressure. A new front rolled in today, bringing rain and pain. (Aren't I the clever one.)
I forgot to comment the other day about something my boss said to me. "Wow, you look really healthy. I know you have struggled with your health (please, you don't know the half of it), but you look really, really good." Uhh... thanks? I have improved my makeup proficiency, and I fixed my hair decently that day. I do not know what else to say. Maybe because I lost 20 pounds and have kept it off?
The clinical trial nurse, Alyssa, emailed me. She was asking which day is good for rescheduling the screening visit.
I hope the test results are ready quickly. I really want to get on medication.
Sensory:
I forgot to comment the other day about something my boss said to me. "Wow, you look really healthy. I know you have struggled with your health (please, you don't know the half of it), but you look really, really good." Uhh... thanks? I have improved my makeup proficiency, and I fixed my hair decently that day. I do not know what else to say. Maybe because I lost 20 pounds and have kept it off?
The clinical trial nurse, Alyssa, emailed me. She was asking which day is good for rescheduling the screening visit.
I hope the test results are ready quickly. I really want to get on medication.
Sensory:
-Pins and needles: 5, I was sitting in a meeting today and having trouble paying attention, because all I could think was, "My left leg is going numb... pins and needles... this is surreal. These people have no idea that I cannot feel my foot, and the rest of my leg has horrible pins and needles." I feel really alone in those moments.
-Tingles: 1
-Paresthesias (burning): 4, in my feet and... wait for it... butt! You cannot say that my MS does not have a sense of humor. Sick humor, unfortunately.
-Paresthesias (other): 0
-Numbness: 4, lost feeling in my whole left foot for a while, and also a new permanent numbness: my right baby toe. Now I have a matching set of numb toes.
-Vision: 3, difficulty focusing, seeing double with the letters on street signs, light things look like they are glowing around them. Floaters as always, but I will just bring them up from now on if they get bad.
-Nerve pain: 6 all down my left sciatic nerve--the butt nerve's connected to the...calf nerve
Motor:
-Walking: 1
-Sore muscles: 2
-Fine motor: 2
-Weak muscles: 5
-Spasticity: 2
Cognitive:
-Language processing: 2
-Memory: 2
-Attention: 1
-Confusion: 1
General:
-Fatigue: 3
-Balance: 2
-Sleep: 2
-Bladder: 1
Emotions: I cried a bit a couple of times this evening. Now I cannot remember why. Ah, the MS brain. But I do remember that I sucked it back in. I suppose I will let it out on Wednesday, when I do not need to work. Then I can allow myself the luxury of grieving.
Saturday, October 15, 2011
On Looking Good
This morning I woke up at 6:40 with a bad dream. Since I had planned an 8:30 appointment with someone from church to videotape myself working with her child, I went ahead and got up. I had slept almost eight hours, but I was tired. Stiff. Sore. I went through my morning routine but also made sure I had fantastic makeup and at least decent hair. Taping, after all. So I stood at the mirror in the bathroom for that, ignoring my legs' requests to sit down.
Then I went to the church acquaintance's home. Somehow I ended up having all three of her children with me. I had to be high-energy for the camera, "in the moment" to demonstrate what I wanted to demonstrate, aware of where the children were (moving them if they blocked the camera), and cognizant of where the baby was. I enjoyed the children, who were little darlings, but I used a lot of energy during my visit with them.
I came home briefly and helped a friend with something on the computer. Then I went to my shrink appointment.
The first thing she said was, "You look great! You must be doing a lot better."
Don't get me wrong, I felt alright at that moment. But great? Now that is taking things too far.
Yesterday I had a horrible day but got compliments on how good I looked, from children and adults alike. Makeup does wonders. And as an aside, children give the best compliments. "You have pretty hair." "You eyebrows are pretty." (I got that from at least three kids, who I think were referring to my eyeshadow.)
I know that I have mentioned before that MS is called the "But you look so good" disease. I can affirm that this is true. I suppose I should be grateful that my struggles are not obvious to the world, so I can keep it to myself if I choose. But sometimes I would like for people to know how I am doing, such as people close to me. I cannot exactly go around saying, "Today I am having a bad day. My spasticity is over the top. Just so you know."
Sometimes I get annoyed or frustrated when I need something and cannot get it or do it--or it is extremely difficult for me and will mean that I will be stuck on the couch for hours--and no one knows how I am feeling. How can no one notice that I am exhausted? Or in pain? Or weak?
Is there something between suffering in silence and being a whiny downer?
Then I went to the church acquaintance's home. Somehow I ended up having all three of her children with me. I had to be high-energy for the camera, "in the moment" to demonstrate what I wanted to demonstrate, aware of where the children were (moving them if they blocked the camera), and cognizant of where the baby was. I enjoyed the children, who were little darlings, but I used a lot of energy during my visit with them.
I came home briefly and helped a friend with something on the computer. Then I went to my shrink appointment.
The first thing she said was, "You look great! You must be doing a lot better."
Don't get me wrong, I felt alright at that moment. But great? Now that is taking things too far.
Yesterday I had a horrible day but got compliments on how good I looked, from children and adults alike. Makeup does wonders. And as an aside, children give the best compliments. "You have pretty hair." "You eyebrows are pretty." (I got that from at least three kids, who I think were referring to my eyeshadow.)
I know that I have mentioned before that MS is called the "But you look so good" disease. I can affirm that this is true. I suppose I should be grateful that my struggles are not obvious to the world, so I can keep it to myself if I choose. But sometimes I would like for people to know how I am doing, such as people close to me. I cannot exactly go around saying, "Today I am having a bad day. My spasticity is over the top. Just so you know."
Sometimes I get annoyed or frustrated when I need something and cannot get it or do it--or it is extremely difficult for me and will mean that I will be stuck on the couch for hours--and no one knows how I am feeling. How can no one notice that I am exhausted? Or in pain? Or weak?
Is there something between suffering in silence and being a whiny downer?
Monday, August 29, 2011
Rough Night
I went to bed at 11:00--I need to go earlier, but I end up talking with my friend every night. Last night she was saying that it's hard for her to believe that I have MS, because I look fine. I can't remember what I said, but I ended up crying. I cry when I think about it. It's so scary.
I fell asleep easily, but I awoke at 4:30 and had trouble getting back to sleep. I briefly slept from 7:00-7:20, but then my roommate's shower etc. noises woke me up.
I have a crushing headache.
My back hurts--upper back, like between my shoulder blades.
The pins and needles and semi-numbness are bad in my feet and also affecting my legs. It feels like someone is grabbing my left foot.
It's hard to think straight.
I fell asleep easily, but I awoke at 4:30 and had trouble getting back to sleep. I briefly slept from 7:00-7:20, but then my roommate's shower etc. noises woke me up.
I have a crushing headache.
My back hurts--upper back, like between my shoulder blades.
The pins and needles and semi-numbness are bad in my feet and also affecting my legs. It feels like someone is grabbing my left foot.
It's hard to think straight.
Saturday, August 27, 2011
The Cushion Is Deflating
One thing my friend from work said is exactly what I have been thinking. I think I've expressed it on this blog before: I was functioning at such a high level before that I had room to lose skills and still look normal to people.
When I notice myself a little wobbly, I recognize that it's a big decline, because I had that awesome gymnast's balance before. I've never slipped on ice. Seriously, my balance was legendary. Um, not anymore. But only two people around here have known me long enough to know that.
My work friend was specifically talking about my memory and language skills. She knows I am brilliant. Am? Was, maybe. I don't know what I am now. We were joking that I was lucky I had a cushion, but she knows how much I miss my former intellect. Not that it's completely gone, but it's not what it was. Hopefully that comes back or at least improves. I told her that I'm trusting my brain to keep being smart, to find workarounds. I believe my brain can make new connections around the damaged areas. Reallocate space.
When I notice myself a little wobbly, I recognize that it's a big decline, because I had that awesome gymnast's balance before. I've never slipped on ice. Seriously, my balance was legendary. Um, not anymore. But only two people around here have known me long enough to know that.
My work friend was specifically talking about my memory and language skills. She knows I am brilliant. Am? Was, maybe. I don't know what I am now. We were joking that I was lucky I had a cushion, but she knows how much I miss my former intellect. Not that it's completely gone, but it's not what it was. Hopefully that comes back or at least improves. I told her that I'm trusting my brain to keep being smart, to find workarounds. I believe my brain can make new connections around the damaged areas. Reallocate space.
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