This is what I try so hard to do, don't show the pain, don't show the strain.
It is important in certain situations to pretend like Everything is fine.
I cannot wait to get home and take off the masks!
I paste on a smile, I bite back the pain, and I swallow my tears... This is what I try so hard to do, don't show the pain, don't show the strain. It is important in certain situations to pretend like Everything is fine. But everything is not fine! My multitude of crappy symptoms are killing me! I would cry, but that just causes more pain. I would respond to my friends' posts on Facebook, I would read a book, But my brain is not interpreting right, So I won't. My symptoms all effect each other! Each one that is irritated irritates another one making me a miserable mess!
I cannot wait to get home and take off the masks!
0 Comments
In the last few days comments have been made, "I have a friend with fibro and she still works." "My aunt has that and she gets around just fine." Then a dear friend and fibro sister said that she just pushes through it or she would never be able to do anything. First, let me clairfy that my dear friend wasn't not meaning anything toward me, I am sure of that because she would never intentionally hurt my feelings. But her words made me feel guilty, like I wasn't trying hard enough, like I would have a life if I just tried harder. So I stewed on this, a lot over the last few days. I even pushed myself, knowing I would pay a huge price. Then I kicked myself in the ass because I was trying to do the exact thing I try to tell people I can't do. My illness is different, every case is different! While some can "push through it," others push just to get out of bed. While some can live a relatively normal appearing life, others are house or even bed bound. I am thrilled for your friend or family member who has a chronic illness and is able to "push through it," I am sorry for your friend or family member who is house bound.
However, I wish you would not compare us, because we are different, no two chronic illnesses are the same. I have it worse than most and better than others! I also have (as many Spoonies do) multiple other conditions! So comparing me to "them," is unfair to both of us. One more thing, we are told by many uneducated doctors that fibro is not progressive! There are many doctors and patients that would tell you differently! I was first diagnosed 20 years ago, for a few years I had no symptoms then bam, it hits with way more debilitating symptoms. I used to be the fibro Spoonie who could hold down and job and party like a rock star! It can and usually does get worse. Please se don't compare, because it is not comparable. Apples to oranges. So I started the new medications the other day, I was worried because 2 of the 3 new ones said "May cause drowsiness/dizziness!" Both new medications were to be taken in the morning. I was like "WTF are they serious? I can't stay awake as it is!" But the doctor said to trust him, so I did... Guess what? I stay awake most of the day now, naps are much shorter, and last night I slept 8.5 hours!!! EIGHT & a HALF HOURS- with only one wake up! Now I stay awake, but am physically to tired or sore to do much and my attention span and focus is barely functionable.
So now what to do, awake, during the day, without the energy or concentration to do anything. Hoping that those symptoms will change once I get over this flu-like allergy thing. I am a member of many groups about my Heath issues and one thing I see as common is the lack of family and spouse support. That is not the case for me! I am beyond blessed when it comes to my husband and sons support. First let me briefly rave about my boys, 19 & 21! They have seen my highs and lows since they were born, although a diagnosis was not always in place. They have stood by me, worried to much, and always loved me and support me 100%, I am not giving away too much, there is another post for them. This is post is about my protective, supportive, and ever loving husband. We have had our rough spots as all couples do, but when it comes to my health, there isn't much he wouldn't do! Of course he is the financial supporter, as the spouse of most chronically ill people. But he goes beyond that. he works 10-12 hours a day, 6-7 days per week, then... He cooks or cleans when I am not able, well even when it's been a rough day, he always helps out. He pushes my wheel chair when I need it. He changes plans without batting an eye if I am not feeling well. He give massages, and reminds me to take my medications, he takes care of outside stuff. Then he drives me where I need to go and that includes time off from work to take me the 7+hour one way drive to my doctor. He takes care of me in a way I didn't know possible. He he is much younger than I am, and I expected him to run when things got bad, and they have gotten bad... But instead of running away, he ran to me! Our relationship has strengthened beyond my wildest imagination! I cannot even believe he is the man I married! Being married to me always has its challenges, but he meets each challenge with love and grace and we get through them. Even when I feel like giving up. He is my rock!
Tonight, he is doing something brand new! He listened to me when I said I would be fine at home and for him to go enjoy himself. He doesn't do that often enough anymore. It took some convincing and some threats, but he went to the car races, something he will enjoy. He never wants to leave me out, which is sweet, and I appreciated It, but he needs to enjoy his life too! I'm so proud of him for going! And very thankful to our son who helped with the threats and made things move song rather fast so hubby couldn't change his mind. I hope they are having fun. I am beyond blessed to be the wife of this amazing man. It has been a tough few weeks...It seems like it has been one thing after another lately, I've been physically and emotionally overwhelmed. The more days pass, the further it feels like I'm separating myself from others, or they from me. I know there comes a point that "how I really am" doesn't mean much, because it is always the same... "Feel like crap." Or I talk about some new Health issue. I know that gets old to most, I can tell because how quickly they change the subject. And that's okay, I get it. I guess. I do love hearing about your adventures, your joys and sadnesses, your life. But please remember, chronic illness IS my life. So many friends respond to the good, and that is good. But supporting me during the not so good would be great too. There have been more bad days than good lately, my functionality is really low. I want to respond to your messages, posts, texts to let you know I am here and would love to have this conversation... But my mind slips and my words fail. So I stare at your brief words and click the message off. The guilt of the kind of friend I am being is just as painful as the friends shunning me. Please know, I still love you, I am just having a tough time right now. Being Chronically Ill takes Courage!
|
Cosmic Gypsy
The real raw experience as I journey through the waters of Chronic Illnesses. Archives
April 2016
Categories |