Sensory-Friendly Clothing

With this horrible, burning pain, my clothing really hurts. I wonder if this is what kids with autism feel like when they complain that their clothing hurts. Many of them cannot stand seams or tags.

Seams are painful, and most textures are torturous. Any degree of pressure or binding is out. Thank goodness for my Life Is Good creamy shirts, which are extra soft. Pants are tough, because they all have seams. I do have one pair of dress pants with silk lining, so I have been wearing them, but they still create pressure lines. I bought new sweatpants, because I had nothing to wear around the house. One pair of thin pajamas do not hurt. And I had no jacket that did not hurt my shoulders, so I bought a new one--amazingly, I found a peacoat-cut sweatshirt. I never thought clothing could be this complicated!

So... I remembered that some kids I took care of many years ago had comfortable pajamas from a Scandinavian brand. After some googling, I found the name: hanna andersson. And they have women's pajamas with flatlock seams. Score!

Finding sensory-friendly clothing is hard and expensive. But with soft, comfortable clothing, my pain level is sometimes sub-suicidal. And so I close my eyes and hand over my credit card.

Coming Down With Something?

I had a weird day, because I was so tired and weak, but my pain was low. Sometimes my sensory system was a bit on edge. Maybe I am fighting off a virus or something--everyone at work seems to be, plus the people I was visiting over the holidays. I felt a bit flu-ish. Not exactly achy, just hypersensitive.

I had trouble driving today. I was trying to figure out why. Fatigue? I am guessing that is it. Probably cognition is a bit of it.

Sensory:

-Pins and needles: 1

-Tingles: 1

-Dysesthetic pain: 1

-Paresthesias: 0

-Numbness: 1

-Vision: 3, it gets worse and better. I wonder why.

-Nerve pain: 1

-Hearing: 0

Motor:

-Walking: 1

-Sore muscles: 1

-Fine motor: 3, poor handwriting--enough that others noticed

-Weak muscles: 6, my legs were weak today. And my right side in general.

-Spasticity: 4, and had some twitching in my left foot

Cognitive:

-Processing: 2

-Memory: 1

-Attention: 1

-Confusion: 1

General:

-Fatigue: 8

-Balance: 1

-Sleep: 2

-Bladder: 1 

-Proprioception: 1

-Swallowing: 1?

-A: 0

-B: 0

Emotions: I'm okay.

Sleep Disorder

I slept seven hours, woke up still exhausted, but couldn't get back to sleep. I need to figure out this sleep disorder. I was googling the effects of sleep deprivation, and I saw that you can't catch up on just a few good nights of sleep--and seven hours is not a good night of sleep for someone with MS.

But I don't think I have a sleep disorder, per se. The more I think about it and pay attention to how I'm feeling, the more I believe that I have an anxiety disorder, which is affecting my sleep. I usually fall asleep fine. I did take more than an hour to fall asleep last night (after taking 5 mg of Ambien), but typically I'm asleep within 15 minutes. The problem is that I can't stay asleep all night. Thoughts keep me awake.

I'm worried about the habit-forming effects of Ambien. I really don't want to take it, but seven hours of sleep is certainly better than four.

Hopefully Lexapro will help. I took the first one last night. It takes a few weeks for it to start working. I would like to try therapy, though, because I hate to rely on pharmaceuticals. And I am planning to decide on a firm bedtime and stick to it, maybe develop a routine, and try some lavender oil. Can't hurt to try.

Today I have felt nauseated, achy, tired, sinus headache, and had a bit of a cough. And hypersensitivity through the roof. I wonder if I have a cold or flu. I think it might have started yesterday and I just assumed it was the MS. I took some non-drowsy cold/flu medicine a little over an hour ago. My aches are tons better, I'm not coughing, and I feel more awake. I guess we'll see how the day progresses. Of course I do NOT want to be sick on top of everything, but I would be relieved if it's not the MS making me feel this badly. I can't do anything right now, because I'm exhausted and feel crappy.

Sleep deprivation affects not only your energy level but also your cognition. It can make you forgetful and have difficulty processing things. I have that anyway! I feel like I need to get the anxiety and sleep under control so that I can sort out how much is the sleep problem and how much is MS.

Better and Worse

I'm having a tough recovery from the LP.

On the positive side, I can tolerate sitting up for up to two minutes with only minor shocks and pain. Then the pain increases and I have to lie down. This is making it hard to drink enough water to replenish the 11 or 12 tubes of fluids I've lost in the last two days. Oh and my headache is gone, knock on wood.

On the negative side, I feel like I have the flu. That achy, spinny-head, weak, shaky, hot/cold feeling? That one. Hopefully it's not meningitis--that's the last thing I need. I wanted to check my temperature but can't find any of the three thermometers we should have around here.

I want to die. Or tear my skin off. I guess my nerves are going nuts.

Today's Stats

Sensory problems:
-Pins and needles: 8--they're pretty much everywhere today. Fingers, back, tongue, feet, legs, and... between legs
-Hypersensitivity: 7 but I kind of asked for it. Aside from the nasty hour after I took a bath I would have given it a 1 or 2
-Paresthesias: 1
-Numbness: 8? Not sure how to rate that, but it was pretty miserable.



Motor problems:
-Gait: 3--on the balls of my feet unless I work to walk heel-toe
-Sore muscles: 3 (still taking ibuprofen for my back) - I have noticed that if I don't walk much, I don't have problems with this. Another trigger is using my laptop on my lap... maybe the heat.
-Fine motor: 3
-Weak muscles: 4

Cognitive problems:
-Language processing: 1
-Memory: 2

General problems:
-Fatigue: 5
-Balance: 2


I tried taking my second dose of gabapentin earlier today than normal. I took the first one at 7:30 and the second one at 1:15. I still dipped low around 3:30, but the low maybe didn't last as long. And I got super tired at 8:00, which would be right as it's wearing off. Since taking this medication I've been going to bed late, like 11:00, and I'm usually not that tired. I think I might have a paradoxical reaction to gabapentin, which is supposed to make you drowsy. It seriously does not for me. I think it gives me more energy. Ugh. 9:00 and I'm falling asleep! But I think I liked the energy spread today better, so maybe I'll try it again tomorrow. And ask the doctor about it.


What a strange day.


Tomorrow I will meet Dr. Gabby! Fingers crossed that she's SMART.

Crazy Confirmation

My back was hurting so much (stupid period) and couldn't be controlled by ibuprofen. Normally I would take a hot bath to relax the muscles... Well, I got fed up and went ahead and took a warm (not hot) bath. Bad idea.

Now I'm shaky and the nerves throughout my body are CRAZY. Hypersensitive? I don't see how you can call it that when there's no stimulus. It's like they're firing on their own. Ugh. I hate this feeling!

Cue Foreboding Music

Things took a turn for the worse last night. My pins and needles increased in my legs around 8:00, and they were quite bad by 10:00, when I was trying to go to sleep. They were about a level 6 and going down the backs of both legs and onto my feet. It felt like someone was squeezing my feet. But when I did fall asleep, I only woke once during the night, which is typical for me.

This morning I had a training meeting that lasted four hours, which was nice and cool (cold, actually) and where the chairs were lightly padded. I know that I'm asking for trouble if I sit on an unpadded metal or plastic chair--I'll have sciatic nerve pain or pins and needles. Well, apparently it didn't matter today, because not only did I have pins and needles (not really pain), I lost feeling in both legs and the bottoms of my feet. I got up and walked around during breaks, but it didn't help. So I'm not sure that sitting was the problem or if it would have happened no matter what I was doing. The numbness was so uncomfortable and distracting, because it wasn't like it all went numb and stayed that way. It was in and out of numbness, almost like pulsation or waves going through my legs. That was new and anxiety provoking.

I also noticed that my fine motor was not great. My handwriting was messier than usual, and I couldn't seem to hold the pen correctly. My thumb kept ending up under my index finger.

And I am so sensitive to pain. As part of this training we had to practice defending ourselves from people who are trying to hurt us. My partner would grab me and I'd have to use the right techniques to get away or restrain her. Every time I pulled out of her grasp on my wrist it really hurt. Luckily she didn't actually grab but just laid her hands on me when we practiced getting out of a choke hold. Gosh.

The numbness did get better during the last hour of the meeting, or at least it stopped feeling like it was pulsating and going in and out of numbness. I ended up with tingly pins and needles down the backs of my legs, especially the right, and numbness and a a feeling of pressure on my feet, like someone was holding them.

Oh, I also have had numbness and some pins and needles in the tips of my fingers all morning.

Gosh, I just remembered one more thing. I had pins and needles in my back. Never had that before.

I hate it when new things happen or symptoms worsen, because I don't know what to expect--I don't know how bad it's going to get. It makes me feel anxious or scared. If this is MS, I can see why anxiety is one of the symptoms. You never know what your body is going to do next.

Shoot Me Now

I'm so weak and hypersensitive! Yeah, going out and doing more things when I'm tired did not help.

I'm walking funny. I walk like a stroke victim, with one leg not bending right or something.

I'm ready to fall asleep. But it's too late for a nap and too early to go to bed.

I'm miserable.

Still Not Great

I'm tired this morning, but my pins and needles and hypersensitivity (I guess I'll call it that now) are behaving pretty well.

Although it's not pins and needling yet, my right foot is definitely numb in the area I thought. I tested it with a push pin. The skin is numb, but just under the skin is very sensitive.

Last night I was sooooo hypersensitive. But at least I didn't have the feeling of a bug crawling up the back of my thigh, which had been happening every night for about a week. Creepy!

Mmm... want to sleep. Getting more tired by the minute. But I have to see a private client and then interpret for a friend's HR appointment.

Long, Hard Day

I woke up tired. After eight hours of sleep. I know: how is that possible?

So I was sore and tired. I noticed that my foot has less pins and needles in the morning, and it increases as the day goes on. Anyway...

I had my MRI today! Actually three MRIs: cervical spine, thoracic spine, and lumbar spine. This took two hours to complete. I laid in one position, with little movement, in a narrow tube, for two hours. Two... hours. My butt fell asleep an hour in, which was NOT comfortable. My arms were also losing sensation. It was overall not great, but I think I fell asleep (or came close) during the thoracic series. I was kind of half asleep during the cervical series, letting my mind wander, and I was scolded for twitching and moving my arms. I knew I couldn't cough or swallow, but I didn't know I couldn't move my arms. Ugh. That added about 15 minutes to the time. Oops, my bad.

No shots today, because no contrast. Yay...

I will see my new neurologist, Dr. Gabby, next Thursday. What happened to Dr. Sami, you ask? Well, Dr. Danny had initially referred me to Dr. Gabby, and the neurology practice's secretary told me that she will be leaving the practice next month. She convinced me to take someone else. I spoke with Dr. Danny yesterday about something else (he called me at 10:00 at night!), and he said Dr. Gabby is the one. Apparently several doctors are leaving that practice because it's "going in a different direction," but she's only moving up the road. So I can move with her, I guess.

After the neverending MRI ended and I got the films, I raced home to grab my church bag and a snack, and then I raced down to a church building about half an hour away. I was trying to make it there by 2:00, so I could be done by 4:00 and beat traffic. I had trouble while I was there with weakness. It was hard to hold my arm up for even a second. I was sitting most of the time, so that was good. I was really tired, though.

I made it home, only to realize that I had to type a report for work. Boo. I laid on the couch and typed a record-breaking two-hour report. My brain cooperated. My body is the problem today, with the fatigue, weakness, and haywire nerves. Yup, I'm having the haywire nerve tingles. The radiologist today called that hypersensitivity. I'm such a sensitive woman.