I am frustrated. Nuff’ said.
Time to be real.
My right arm is a bit numb so lets see how much writing I get done. Go arm go!
When I’m not working, I spend most of my time sleeping or laying in bed.
When I get home from work, I get into bed right away, usually turning on my electric heating pad and resting it over the part of my body that aches or pains me the most. If I do too much physically, like hang out with friends on the weekend, although it seems harmless, I know I am using up energy that I don’t have, and I suffer because of it. So, my body gets sick. It may not make sense, but there is a spoon analogy that we (the sicko community) like to use to help others understand what it’s like to only have so much energy, or suffer from fatigue. It’s not that we are lazy, but that our body does not have the physical strength to do all the things that normal people can do in a day. For me, personally, my body will collapse. My ability to speak gets distorted and my hands tremor like a mad person. I hyperventilate because I can’t breathe properly and feel like I’ve run a marathon, and simultaneously my limbs will go weak, and I suddenly feel like I have large bowling balls strapped to my arms. Standing and remaining balanced is impossible. I will sit down immediately when this happens because I will feel light headed. I will usually get a headache, and become sensitive to light. On really bad days, numbness pairs with the weakness in my extremities. All of this happens, when I do, “too much” or “overwork” myself.
So to maybe help you understand that a bit better, there’s a spoon analogy goes like this: Say you are given 8 spoons for the day. That’s all you get. No more, no less. Other people around you have unlimited spoons. But you, lucky duck, have 12. And each activity you must do, uses up a spoon. Some activities that involve more physical exertion may require more than one spoon. Going to work, for me, uses all of my spoons, hands down. So I try not to plan activities with my friends if I know I am working the same day. So think about a normal routine you would do for the day, like take a shower (one spoon), brush your teeth and do your hair (2 spoons), get dressed (one spoon), make breakfast (another spoon), go to work (uses up the rest of your spoons!). Now your spoons are gone, and your spoons are the amount of energy you have to do daily tasks you require. So when you come home from work, because you spoons are gone, you have energy to do nothing. So, like myself, you sleep, because you don’t want to experience a flare up (like what I mentioned above).
The past few weeks I have had flareups and infections galore.
It started with the “perma-flu” and layringitis I talked about in my last post. I had aches all over my body so bad that I could not move onto my right side to sleep. And I had fevers. Bad fevers. Fevers that woke me up because I was drenched in sweat and had to rip clothing off of my body. (Too bad I wasen’t listening to Nelly at the time ;)). Headaches, nausea, and cold symptoms started appearing. And I’m pretty used to this because I go through this stuff ‘normally’. It was hard for me to figure out if I was having the flu or another flare up. I called in sick with this for about a week. Only to get worse the second week and catch an infection in my throat. I got laryngitis! Aint nobody got time fo’ dat! I started noticing other problems while I was on antibiotics for my throat infection. I was um, bleeding? Not period bleeding. I figured I had another UT or kidney stones. I waited it out and figured that since I was already on antibiotics they would probably ninja kick the infection out of my body if I did have a UTI. During this time, I had major bloating, cramping, and lovely shooting pains in my abdominal area paired with nausea. I waited until my antibiotics were gone, and went to the clinic. Yeap, it was confirmed. I had a UTI. So I got put on more antibiotics. Happy happy joy joy.
Around this time, I have been finishing up my prescription of “seasonale” and was into my 4th day of sugar pills. For the females out there, you know that when you take the sugar pills, you get your period. I did not. I figured that the UTI infection was throwing off my cycle, even if it was a fake cycle induced by sugar pills. Anyway, when I finally got it, several days later, oh my Lord was I in pain. I have a disease called endometriosis, and for those who don’t know what it is, it’s a disease where the endometrial tissue grows and attaches itself to other areas/organs of the body instead of being shed during “that time of the month”. Endo can get so severe that it fuses organs together. Anyways, it’s painful. The main symptom of the disease is pain. There is no cure. Surgery, pain killers, and oral contraceptives are the only remedies to help lessen the pain.
Right now, I think I have gotten over the worst stages of my endo pain PTL, and have been dealing with pain in other places. Shooting pain in my lower back and shooting pain in my right side that has been swollen for a while. It feels like someone has been cutting my insides with a knife. So, because I have been to the doctors so much recently, I don’t want to go and check if I have kidney stones…again. I feel like my life is a joke right now. It has been immensely painful to urinate. TMI. I know, I know. Suck it up buttercup. But having a UTI & endo at the same time is no fun. Add Kidney stones to the mix and it sounds lethal. LOL.
About 4 weeks ago maybe, I went to see a rhumatologist. He was kind of rude, but I didn’t really expect anything different.
He was telling me that based on my symptoms I should go and see a neurologist, and I told him I have already and the neuro says I’m fine. Smh. Anyways, he ordered more tests again, and I’m not very hopeful anything will come back positive.
I’m not very positive that anyone will be able to help me anymore. And to be honest. I’m just sad and frustrated about the whole thing. I feel like a waste of space because I can’t even do things the same way I used to be able to. (Like work for example) I find myself slowing down, and having less energy there. No longer do I take individuals on outings, but I vouch to stay home and watch movies. My tremors have been affecting me there, really badly these past few weeks, and I’ve been having a hard time doing things that require my fingers like meds, g-tubes, and feedings. I’m having to try harder and harder to look normal and act fine and it’s starting to really tear me apart emotionally. I “look fine” on the surface but I feel like hell on the inside. Actually, I feel like I’m living in hell and am being tormented constantly. I find that my patience has worn thin and I get frustrated now when things start happening to me. All of my friends and loved ones tell me that I need to quit, but I know that if I do, I’ll be screwed because I don’t have a diagnosis yet for my neurological symptoms. Yesterday I yelled in anger at my right leg when it started to spasm. I was very angry. I know that God is taking care of me, but right now. I’m exhausted. We all have those days.