There are so many topics I want to write about. So many different elements that come along with Multiple Sclerosis, Rheumatoid Arthritis, Fibromyalgia (FM), POTS, Stargardt disease, and all the other stuff that these BIG issues cause. Between the Blood Pressure issues POTS causes and the Central Apnea that MS causes, etc. Like I said there are so many elements that are brought on with these medical conditions. Each one bringing on its own mess of chaos. Like my doctors tell me I am a difficult and complicated case. I just don't pose with one issue. My whole body is under attack. And so far I am not winning at all. Let's not forget that I have a mass growing on my Ovary that is very painful and soon will be removed. And the idea of playing with Cancer is not fun to think about.
The one thing that is in common is pain when it comes to these issues. MS causes pain, RA causes pain. My eye issues cause pain, POTS causes its own kind of pain. And that mass causes me pain. And they all like to play with me at once it seems like. None giving me any type of break at all.
Dealing with nerve pain from the MS was bad enough and the deterioration of my muscles and weakness that comes with pain. Try walking on muscles that that are atrophying from a condition such as MS. And it all depends on the type of MS you have and how advanced. I am not one of those MSers that can run a marathon. Let's put it that way. Using a cane to walk, walker and then my wheelchair when I need it. I use the wheelchair a lot to cook out of. I am fond of it. It helps me.
The RA has been in full swing flare as well pain wise. I am in beginning stages of it being crippling. Slowly twisting my fingers sideways and causing the fun nodules that come with it. I guess I am blessed that it is not further along than what it is. But the problem is I have other issues that cause it to feel worse. It is also in my hips. I frankly am not sure what is worse. Because it literally can take me hours to even get out of bed. So I better wake up in plenty of time to try to even start moving and somehow get out of bed. There are days where I lay alone in my room crying and trying to turn over. See it does not matter how I fall asleep. On my back, and on my sides. Forget stomach sleeping. That is bad for you anyways. But no matter how I lay down. My hips freeze up.
The trick I have learned is to try to roll out of the bed. And get on my knees. My bed is too low to just let my legs dangle off into a position that has my stomach and head laying on the bed. And I start rocking my hips back and forth back and forth. Helping them to loosen up. But the problem is managing to get into this position. And having NOBODY to help me get there. Mario leaves at 4 AM in the morning. Kids are asleep. Can't ask my mom to help me. I am stuck trying to do this myself. What happens when I can't do it anymore and push past the pain that causes me to almost pass out? I don't even want to think about it.
My hands are the second runner up when it comes to RA. It hurts to grip, it hurts to write, typing is even hard. But still easier than gripping and writing. Because like I said. While they are starting to deform. I am in very early stages. Unless I show you where they are not straight. You are not going to notice till it is further along. Those who know me can tell. But at least I still have some function in them. And I am going to take advantage of that because before long it will be gone. And I am only 37. So that makes me really sad.
Let's not forget my AC joints. Things like brushing my hair. Holding a book for too long. Or in my case iPad to read for too long. Putting on makeup trying to hold my arm up. Washing my hair. Trying to put a bra on. Putting a shirt over my head. All things we should be able to do normally are a challenge for me. I have gone to therapy. But no longer can afford to go 3x a week.
Oh, the back. Let's not forget the back. I have degenerative Disc Disease. For my age, it is pretty advanced. And I have this blood tumor growing in the middle of a disc that causes pain and discomfort. But it is very dangerous to operate on because of it is made of veins and blood. So we leave it.
The Knees and feet are inflicted with RA as well. However for me those seem to be the lesser of the evils compared to my other joints.
I also suffer from Fibromyalgia. And it seems like most people do. So you know that this brings on its own pain as well. Just those points on your body that when are touched you go through the roof. You know what I am talking about. And honestly I forget I have FM sometimes because I got so many other crazy things that I have been DX with. Somtimes the other pains just out weight this one for me personally in what I go through. I was on Lyrica for a while for it. But man that drug is expenseive.
I have been having eye pain. Frankly I am not sure if it Optic Neuritis from the MS or is it the aftermath of losing my eyes from the Stargardt's disease. I also get nasty migraines from being legally blind and fighting to focus with half of one eye left. So that could be it as well. But the pain is not fun.
POTS causes lots of fatigue which in itself is crazy. Not to mention the MS and RA cause the fatigue too. But I get this intense pressure in my head and the swelling in my legs and feet cause pain and pressure.
And last but not least that mass growing on my Ovary is actually very painful. I get a lot of pain in my abdomen. The groin area. It feels like this intense sharp hot pain. It is really strange. I will be glad when it is gone. One less thing to worry about pain wise.
So for me with these chronic illnesses one thing that stands in common is pain. And today it has gotten to me. All I want to do is cry and lay in bed. But I can't. I have kids. And they need me. It is almost 1:30 right now. But I don't think I can endure the day much longer. It will be a simple dinner and early to bed kind of day. This gloomy weather is not making it any easier.
Next time I want to talk about Pseudobulbar affect (PBA) A disorder that is common in MS and how it affects me.
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