Category Archives: TAM dairies

Entertainment Parks

Found one other cause for the long-lasting muscle cramps. Entertainment parks… Being afraid of the roller coasters, and long waiting times of course two of the reasons. It was fun at least, but the cause is noted so next time I’m prepared.

Hershey Park is a fun place to be in summers for sure. The scaredy cat I am, I tried only two-three rides. The boat shaped slide is the best! It is way better than those roller coasters. There are maybe two not so bad roller coasters you can take. The rest is crazy!

…cramps

My muscle cramps probably not entirely due to TAM. A recent event demonstrated clearly what happens before I get these long lasting cramps.

Say you go out for dinner and have coffee afterwards. Everything is what you have been eating before. Stress level is of course slightly higher than usual. Everything is fine, you come back home. Coffee has no effect on your sleep, you see the pillow and you are out! You even don’t wake around 3am. So it is close to be a good night.

Then you wake up… you wish you didn’t. Every inch of your bowels hurts. You feel like you need to poop. But nope not gonna work. You wonder if you will get diarrhea. Nope, not the case. Something has irritated your digestion system. You stay home, eat yoghurt, water, bread… You make a salad for lunch.  Then you eat nuts, yoghurt, bread… Nothing calms this down. It’s evening now, you want a better food. So you boil cauliflower-broccoli with lemon and olive oil. You make cummin tea. You drink more water. Nothing works. Exhausted you go to bed.

You wake up the next morning. Starving… You think it is the usual morning hunger. You have breakfast, bread-egg-cheese-olives-rose jam. An hour passses… Two hour passess… You are still starving and it is getting worse. You need food but you shouldn’t eat too much so you eat yoghurt to survive till lunch. You take out a lunchbox frozen for emergency situations. Then you make salad as a second lunch. At this point you understand hobbits asking for second breakfast. You keep eating in small amounts. It’s evening, you get a headache.  Again exhausted you go to bed.

You wake up the next morning. Everything is fine. You say thanks to your brain who fixes up problems while you are at sleep. Then you make an attempt to move. Ouch! Muscle cramps… ‘What a nice surprise, my dear. I have missed you so much!’ I must have really screwed up to have these cramps right after all that problems with the digestive track. You swallow a voltaren pill, 20mg. Nothing bad. Half a day passess, you realize nothing will help and it will last a few days. You can stock on bananas, spinach, paprika, etc. all you want, it has been messed up once it will take time to heal.

A neat sequence of events… Mess up your bowels, then your blood sugar levels (probably pancreas) and end up with long lasting muscle cramps. Isn’t it nice?  And the best part is I don’t know what has irritated my bowels this much. I ate calamari, california rolls, dumplings and salad. And I have eaten all that before. It’s not food poisoning. I would have been waaay worse otherwise. It might have been coffee, but there wasn’t any cream or milk in it. Last time coffee destroyed me it was with cream, lost of cream. Maybe it’s the fried food.

I wish not to repeat this episode ever again…

What counts as disability?

Just submitted my resume to Verify Life Sciences. The application form made think… So if you have a diagnosis but don’t show any major symptoms yet, you fall under disability act, do you not? It is not a high chance (or so I assume) that I will have a problem with day-to-day activities any time soon. But ten more years, it might take me 20 minutes to screw in a light bulb or it might just remain as it is. How they define these slow progressive diseases, I wonder.

Things I cannot do…

I wish there was a way for people to understand without me going over all the details of my condition. When I say I cannot do it do not want to do it, I wish they magically guessed the reason and did not ask again. Most of the time when I say no to a sport event or to a game that requires physical strength, it is because I do not want to feel the pain the next day, and wake up crying.

For you people it might be a 30 seconds run to the bus stop, for me it is eternity. It might be only three floors for you, for me it is equal to climbing the Mount Everest. You might have an hour of fun with maybe a bit of pain the next day, I have pain for a couple of days.

Either it is a selfish act because you want to have fun yourself or you simply want me to be part of and enjoy. I know you mean well either way. And I wish I did not have this condition so I was not a fun reaper but I have.

Here I am, in bed, crying for the past three hours. I am in too much pain just because I did not want explain this disease, I did not want to say no for the fifth time, and I did not want spoil the fun. I have tons of stuff to finish yet, I cannot make that move to get out of the bed. Not yet. After three hours, I’m still waiting for the pain to dissappear. I have been typing this with a few fingers over the phone. The single move that doesn’t hurt.

Things I cannot do, I do not want to do… there is a reason. I do not always feel like explaining the science behind it. Because I know what you see. You see a woman who looks fit with a bit of belly, a human with both legs and arms. You assume that under the skin everything is as it should be. But it is not. Until I learn to say a firm no without spoiling your fun, I wish you stumble upon this or a piece of text like this one so that next time we can both have fun in our own ways.

I have to make that move now, and hope that pain is settled later in the day. I also have to learn not to turn this pain in to agony. Yes it hurts and it will always hurt, but being depressed about it does not help much, does it?

Not a Joke!

There were quite many times I told myself that I was exaggerating the symptoms and my muscles were not actually in a horrible shape. I take all of it back. Perhaps menstrual cycle also affects the level of pain. But this past two weeks was nightmarish. Tubular aggregate myopathy is a real deal, kiddos.

First of all playing dance central for 10-20 minutes as a form of exercise is a form of suicide but at least fun. The pain doesn’t go away easily. When playing I stuck to one song so that at least muscle memory would make it easier later on. I have managed to get 100% correct on Medium level with ‘I am the Best’ song of 2NE1. Yatta! But to do that, I practiced almost everyday 10-30 minutes for ~2/3 weeks. I started from the beginners level and went all the way up to hardcore. In the short term I left more alive and energetic that I even played an hour for two times. I ignored the pain since it wasn’t that horrible and it would get better during the day. Here comes the but…

I stopped playing the past week because one night I got darker urine, fewer, cold like symptoms and I had too much pain. Scary! Even my biopsy site from a year ago was a little swollen (maybe it was always like that and I just realized it) and there was a dull pain in that leg. It took couple of days for the muscle pain to settle but it was obvious that I overdid it.

Now  the long term effects; I get tired from trivial activities, I have problems falling a sleep or getting a good nights rest. I wake up with much more soreness, stiffness in the morning than usual. I walk around like a zombie because even simple activities such as planting a couple flowers in pots knocks me out. Of course these all could be the result of menstruation, hormonal changes and stress. But that means I cannot use this type of chaos to fight the chaos.

In summary, lesson learned: Don’t push the boundaries even if you feel ok. Keep playing kinect games, just not more than 10-15 min tough. Stick being a couch potato for stress relieve. There is always something to watch. These days especially lots and lots to watch… Game of Thrones (second episode of season 6 was a true pain killer)! Descendants of the Sun (second round)! It’s OK, That’s Love (Fourth round)!

If nothing works I can always watch Benny & Joon or random Running Man episodes to cheer up! Oh one of my favourites is where Haha makes fun of GD, asking whether he has seen Ji-Yong. Seeing Song Ji-Hyo jumping off the Macau Tower is another killer episode of course! I love her confidence! Song Ji-Hyo! Fighting!