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Taking it easy *LANGUAGE*

May 23, 2011

Hope you all are well. I’m very close to finishing the first symptom series entry so that will be up this evening (it will be on showering and ways to get around all the challenges that can come with that). I’m also going to be doing an entry on what to expect when you have a home health aide visit, what to look for in an aide, signs that you need to ask for a new aide, etc but as I’ve never been the receipient of home care I can only write it from the view of a support worker (I hold home health care staff to a very high standard though so it will be quite blunt at times). So, if you have had any experiences in this area from role of patient, please feel free to comment, a tweet, or e-mail me. Any input would be appreciated.

Now, onto an update on my condition! I’m taking it easy today because yesterday got really weird really fast. I felt fabulous all morning; tons of energy, no spasms or pain, just a bit of a hard time with balance and the usual numbness and tingling. I got a lot done in the morning (I even stood up to wash my dishes, I haven’t done that in a while so it felt great to do a simple task like a normal person again), was walking without a cane, all was well. But around 1pm things took a drastic turn very suddenly.

It started with a wave of pins and needles. It only hit the areas that were numb and worked it’s way up. So, areas on my feet that were numb suddenly felt like they were being stabbed with hot needles, then that feeling would move further up and the area would go numb again for a few moments. Then, the area that had just felt like it was being stabbed…wow…the pain was unbelievable. The only way I can describe it was like having a kidney stone in my leg that worked it’s way up to my back. The pain did not move like the pins and needles did, it spread. This was in my left leg. The higher the pain travelled, the more intense it got. By the time it stopped spread, it covered my entire leg and a little bit rear (it ended just below my left hip joint). I really can’t express just how painful this was. I was gasping for air and dry heaving from the pain. If I had the opportunity to, I would have spent the rest of the day laying in bed but my family was coming over for dinner.

So, after sitting down for a while (sitting bad the back pain worse, but standing made the leg pain worse, go figure) I cracked and hobbled my way to the meds and popped a pain killer. It didn’t do much really, but it did take a wee bit of the edge off for about an hour. I sucked it up, grabbed my cane, then went out to get some beer. I didn’t bring the cane with me into the store because well….well honestly I don’t know. I’ve stopped avoiding using it in public now because I’d rather get a few funny looks then suffer unnecessarily. It would have been difficult carrying a case of beer while using a cane though. I was limping very heavily and watching my feet as I walked, putting all of my concentration into coordinating my movements as best as I could. Since I had been feeling good in the morning though, I had the energy and patience to actually put on some makeup and do my hair. As I walked into the shop, I looked up to avoid bumping into other customers when I noticed that I was being stared at. But it wasn’t a “what’s wrong with her? why is she walking like that?” kind of stare, I was getting oggled. And I gotta say, it felt good. I didn’t realize how much my appearance has been affecting my mood. For a long time I’ve avoided making myself look good because I just didn’t want to waste any energy on that, but it felt really good to know that despite having something visibly wrong with me someone that doesn’t know me could still be attracted to me. Anywho, back to dinner.

My entire family is aware of my situation now so no one asked too many questions when they saw me with my cane (this was the first time I didn’t force myself to suffer through a family gathering without it for the sake of appearance). The only time it was awkward was when an elderly relative that has Alzheimer’s disease asked me repeatedly what I did to my leg. I fail to see any point in explaining what was wrong to them, they would have just gotten upset over the illness then forgotten what was wrong again. I’m hoping that the next time I see them I will be able to walk without the cane just to avoid the confusion. My leg started spazzing out again really badly and it was really really painful (it still hasn’t stopped yet, I kept ice packs on it when family was over and it helped a bit with the pain a little) but despite that I had a really good time. Everyone was in a fairly good mood so it was nice to just relax and enjoy spending time with family.

After that, I had to go to work then head over to a friend’s house for a few drinks. I barely ever get to go out and see my friends anymore so having to wait until work was done was killing me. I got extremely hot while working and ended up with a bit of heat exhaustion so I got into the bathroom as quick as I could to pour a bunch of cold water over the back of my neck. I also got some severe spasm in my right trapezius muscle (strong enough that I know have a strained muscle in my shoulder) so that was an absolute joy. I was hot, dizzy, in all kinds of pain, felt like I was going to throw up, and was getting aggressive. When I get too warm…wow do I ever turn into a bitch. I just start to hate everything and everyone and get very frustrated very easily. Thankfully after a lot of cooling and going outside in the rain I got the heat exhaustion under control. Working like that was an absolute nightmare and I wanted to just drop everything and quit on the spot but I’m proud of myself for sticking through it despite it all and getting everything done. After going through all that, I got my reward: going to hang out with my friends.

Since my friends are pretty understanding of my limitations, getting in and out of the apartment building was no trouble at all (a true friend greets you at the door, carries your 6 pack for you and holds doors for you despite being in the late stages of pregnancy haha, thank you hun, you’re a doll). I had so much fun last night, it was wonderful. I really missed all the dorky goofiness with my friends. Even though everyone was really tired and sunburned, it was still a great time. The cab ride home though, that was something else.

After hobbling myself and my cane into the cab, the cab driver asked me what was wrong with my leg. I was a little hesitant to answer him at first but I figured who cares, I’ll never see him again and it’s nothing to be ashamed of. So I told him that I have possible multiple sclerosis, and to my surprise he didn’t ask what MS is, he responded with the usual condolences (“oh…wow that’s terrible I’m so sorry to hear that”). Then he asked me something that really caught me off guard. He asked me if I believe in the “power of prayer”. Now, I used to be a spiritual person, but over the years I’ve lost faith and am now an atheist (though not a rampant one, everyone has the right to their own beliefs so I usually don’t discuss it much anymore). I answered honestly and told him no, then he asked me for permission to have his wife lead a prayer circle for me. This was just so unbelievably odd to me, but he meant well and was a pretty nice guy and I didn’t want to be rude, so I said sure why not? It couldn’t hurt. He helped me get out of the cab and refused to take a tip, so that was very nice of him.

Today has been pretty nice despite the spazzing leg and injured shoulder. I’ve gotten very tired very quickly (stupid leg taking so much energy away from me for unnecessary movements), but all in all it was a nice day. I got to have my cute as a button little brother over to play in a kiddie pool, went out for ice cream, and had dinner with my mom. Since I took care of pretty much all of my housework yesterday morning, I get to relax tonight and go to bed early (yay! sleep!). I have a few songs I would like to start recording soon so I’ll go going over notes and such tonight, maybe record a few vocal tracks (I was really in the mood to sing when I got home last night, but it was much too late and I didn’t want to wake the neighbours). After a bit of editting for file size purposes I should also have that intention tremor video up and a newer video of my leg spasms.


From → Journal

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