Hi there. It has been a while since I wrote in here. I am sorry about that. It's the cold season here and besides depression, the pain makes it quite hard to get out of bed and carry on with the day.
One of the symptoms is morning stiffness. Have you ever woken up and tried to get out of bed, only to find that overnight your body feels like it has aged 50 years? Well, that's how it feels some mornings. The best thing though, is that some days you wake up and it feels like you went through a time machine which put you back to your natural age and you can just jump out of bed. A contrast hey? That's the trick with Fibromyalgia. There is no rhyme or reason to it. Many mornings I wake up and "mentally feel" my body to see how it feels before I even try to move.
Does my body want to move? Do I have a headace? Did I get enough sleep? Those are the first thoughts in the morning. That is, I mean, after I think to myself, "How long will it take me to walk to the bathroom this morning"? LOL
The weather and Fibro go together flame and fire. They are almost equals. I have had many people ask me how I am doing and after a quick answer, they feel compelled to tell me the latest news on arthritus. Meaning well of course, people do care very much. Fibromyalgia is a very complicated and varied disorder. Someone asked me last week what Fibro is and I always pause to try and find the shortest answer. What I am finding that I do say first is, "well, it's like arthritis but then add in migraines, sleeplessness, over all body pain, muscle spasms etc". Most people don't know that. Many people assume it is just arthritis to the 'enth' degree.
I was involved in a conversation last week which involved talking about how depression can be eleaved by doing volunteer work, or going for a walk, or doing some journalling. Needless to say, I just got more depressed. lol I was talking with people who do not have Firbro so they did not realize nor understand that (me, at least) because of Fibro can't go for walks because the wind literally hurts my body, journaling requires constant movement of my knuckles which doesn't last very long. Lastly and what I find the most sad is that in order to work, volunteer or even keep an ongoing friendship there has to be some sort of consistancy. Unfortunately there is none with Fibro. Let me quickly explain.
In regards to working: There is no way to guarentee that I can fullfill the schedule set, never mind doing the physical part of working. With Fibro fog it makes it impossible to do the mental part of working because words are hard for me to find, instructions get lost somewhere in that mixed up brain of mine. I am not one to make a commitment if I can't keep it so for me, work is not an option.
In regards to Volunteer work where the schedule is not as consistant, it is still difficult for me. For me volunteer work, it is still a commitment and people in that world out there, need to have a few days scheduled ahead of time. I totally understand that because I too, am the same way. I have just resigned myself to the fact that I can't plan for events like that anymore.
In regards to friendships. That subject is the toughest for me. Even people who know me very well, may not understand Fibro or remember that it is such a huge factor in my life. Like most people these days, my friends are quite busy and have all got those appointment books. When I mention going for coffee next week they check their books to see what their schedule is. I can understand that. That used to be me. Unfortunately though it doesn't work like that anymore. I can't promise that "a week from Friday at noon" I will be physically available. For me that is a great loss because rather than constantly having to rescedule or even take the chance that I might be ok that day, I just simply say that I will call them closer to the day. It's a huge change in what I was used to.
I had a volunteer job actually. Until a few weeks ago I was teaching children who were having English as a second language. Very sadly I had to drop that because I couldn't schedule the next session with consistancy because I never know how I will feel day to day. Sometimes, hour by hour.
Don't get me wrong though. It sounds like I am sure complaining a lot. In many ways I have a right to complain but these symptoms are not the same for everyone and I want to respect that about those who read my blog. If you can volunteer, journal, go for a walk or any of the above, then awesome! I encourage you to go ahead and go for the gold!! I respectfully applaud all those with Fibro who can and do as much as they can.
Speaking of fingers and journaling and the like. I can't continue......... says my wrists. LOL The throbbing pain tells me it is time to sign off. I will try and make an appearance more frequently though.
God Bless and have a safe day.
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Hi Twila, in response to everything you said about fibromyalgia is right on point!!! I totally understand how & what you feel. When I read your story, I felt you were talking about me. Ask me why I am up at 4:00 am writing about this....because I couldn't go to sleep. I am on lots of medications and currently awaiting a response from my job's retirement board as to a final decision to allow me to retire from my job on "non-duty" medical disability as the terminology reads in my contract. I want to let you know to continue to hang in there because giving up is not an option! We must continue to fight & try to educate more people about this "beast" that consumes our bodies on a daily basis. This might sound strange, but sometimes I feel that my body is possessed. You know what I mean? Like you have no control over what is happening to you & it is horrible. Although there may be others out there that wish Fibromyalgia was the only crippling illness that they have to deal with. I can certainly identify with what you mean when you say if someone asks you what is Fibro about and you want to just ask them, "Do you have time to go out with me for breakfast, lunch & dinner while I explain to you what its like?" It pretty much seems a day would go by just trying to get someone to understand what your day really entailed. But then, I feel that I wouldn't want to depress anyone from listening. (smile) Just a little humor here to get a smile! When I awaken in the mornings (every morning), my body is so stiff; especially my hands. I feel I have been writing in my sleep all night. My fingers are always frozen into a position where I cannot bend them or else the knuckles will pop out of place. Fibromyalgia is so very REAL! people need to know about it so that they will gain a better understanding of what it does to the body as well as have compassion for those who suffer with this debilitating illness. Oh! In no way am I disregarding others & their ills at all. It's just that certain illnesses are defined & understood better than others.....like Fibromyalgia!!! I must go to lay down now that I have been up all night into the morning hours. My butt is sore from sitting and my fingers are tired. Hope your day tomorrow is a better one for you. God Bless
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