Wednesday, November 28, 2007

cold days lately

Hi there. It has been so cold lately and breezy. It's hard to get a chance to go outside. I need to go for a few things but I sure try not to go outside. For me the issue is moving air. I know that sounds strange but none the less, it is true. I am not too bad if I stay indoors all day. The other day, about 4 nights ago, the pain was so bad, it was all I could do to just try and think. I am glad I don't have too many days like that. Today was ok so I thought I would write a bit here just to let people know that I am doing ok.

Saturday, November 24, 2007

Broken sleep

Hi again. Changes, changes, changes. Someone once asked me if the pain ever woke me up at night. I remember the answer was, "No, the sleeping meds help me sleep though the night". I never had felt the pain at night until the last 3 nights. When it began, I remembered that someone had asked me that question. Now, I have no idea what to do about it. LOL I guess just go with it like everything else and learn to have a longer day.

I never re-read the post from the other day so I can't remember the topic so I am just going with what today is like. It's 6 am and it still feels like a train crashed into me. I have listed the symptoms of Fibromyalgia on here but not of Chronic Fatigue Syndrome. Lately I have felt my entire body ache. You know, like when you have the flu? Well, its like that all the time now. This body feels so heavy when I lay down that it feels like I am lifting bricks just to move my arm from one spot to the other. Is that part of CRF? or another symptom of Fibro? I'm not sure myself. Iwill have to check.

I know that weather and stress can all aggrivate Fibro and yesterday was a day like that. It's cold and damp here this time of year which does us no favors. My computer crashed a number of days ago but the monitor was fine. Well that is, until yesterday when it too, crashed.

There was a total misunderstanding in communication about my new monitor, which did not help. I thought that she said I could use this monitor for 2 weeks to see if it did the same things as my old monitor. (Thus establishing that the CPU was the problem and not my monitor). I understood that if the problem was my monitor then I would pay for this one and keep it. If the problem turned out to be the CPU that I just bought, they would fix that. Well, long story short, I went to the store to do just that when upon going to leave, the manager told me that nothing can leave the store without being paid for. I explained the deal and we both agreed that there was a communication error. Apparently what the lady meant by "you can use this monitor for 2 weeks" was that after I paid for it....... blah blah. A very important part of that sentance left out, don't you think. LOL

None the less, feeling rather stupid (which happens often enough these days I should be used to it), I said "oh ya that makes sense". Me having owned my own store in the past, should have known that. I also never had Fibro fog when I owned my store and I could think. I have always had what I call "brain freeze" when presented with a situation that is unfamiliar to me so add Fibro fog + brain freeze and you get "a deer stuck in car headlights" reaction. Well suffice to say, I bought the monitor since I don't recall an option B beging presented to me. To make matters worse, my daughters boyfriend who was being very helpful and generous, had offered me my daughters old monitor so that I wouldn't have to buy a new one. (This was before checkout when I realized I misunderstood the original deal). I said to him, "That's something to think about after I take this one home for 2 weeks and if it doesn't keep crashing like my other one, then I will know it's the CPU's fault and I can use my daughters monitor". See, I thought I would be able to return it, having sorted out which piece of hardware was the problem. Well as you can see, it didn't turn out that way. So, now I feel that he (who really doesn't know me since they have only been together a short time) thinks that I figuratively slapped him in the face by not accepting his offer. I like my new LCD monitor though and will keep it. I will just find a way to explain to him that I am not pretending to be broke. LOLOL I just didn't have an option B. Plus, now I am broke. LOLOL

I have an ebay store, which you may already know if you linked here from my store. Since my Fibro has gotten worse I am seriously deciding to sell my stock and close the store. I don't have the energy anymore to offer the kind of service that I want to. I also don't have the physical ability to keep it going either. I will see how I feel as my stock dwindles down.

Other than that, yesterday was an average day. LOLOLOL I went to a meeting where we talked about past memories but that is a whole other topic in and of itself.

So on that note, I will give my fingers a break and sign off for the day. Have a wonderful one and I will blog to you later. :)

Thursday, November 22, 2007

New ache spots

Hi there. I know its been a while since we wrote here but it seems this cold weather is very difficult. There are tender points on your body that Fibro is supposed to affect the worst. I don't have them memorized because really, in this case, it's everywhere. None the less, I never had pain in the neck, (lol) or the lower back until this week.

It's a new symptom for me. The constant unrelenting ache that is persistance throughout my whole body is new as well. For the most part I have been staying in bed and taking pain meds. There hasn't been much time to write in here. Sorry about that, for those who do check from time to time.

I try to cover a symptom each time I write and I guess I just did. What category would that fall into I wonder? "Widespread pain" maybe. It should be called widespread pain inducing intense frustration. That's mostly what I feel when the pain hits.

I am frustrated that I am, I don't know, 40 something I guess, and many days I barely can walk. There is something completely wrong with that. I used to work 3 jobs and never stopped long enough to even think and now all I do is think. Hobbies, yes. We do scrapbooking when we can but even that we had to quit the cutting part out. Unless you scrapbook its hard to explain the machines that I use but mostly now I sell stickers. (In case you checked out the ebay store).
Yesterday was the first time I had a hard time doing up the buttons on my shirt. That has never happened before either. Now THAT is disturbing to me. Greatly.

I am making small albums for Christmas for my family and I have a passion and commitment to scrapbook the Book of Revelations. I find it a wonderfully descriptive chapter and I am loving looking up the history and scrapbooking the pictures so it is fascinating to see it come to life.

Oh and while I am at it, did I mention memory loss? Man. Talk about a pain. I drove to a meeting today (Thursday) and about 3/4 of the way there, I had this strange feeling that today was not Friday (which is when the meeting is; every second week). Sure enough, I got there and no one was around. Now, you say, oh well just go tomorrow. Good thing you weren't a day late. What are the odds that tomorrow I will remember it. LOLOLOL Oh the joys of having a mind that only works when it feels like it.

And we cry. A lot. I wonder if some of it is greiving for what was lost, for what could have been? I mean, besides crying because that invisible knife just insists on stabbing my body whenever it takes a mind to do it. I don't do the feeling sorry for myself. I refuse to do that but it certainly is difficult some days to hide the pain. Anyways since I am in the mood to write I don't want to bore you or make this too long. I will continue tomorrow.

thanks for taking the time to read this. Feel continue to feel free to email me with any comments.

Twila

Thursday, November 15, 2007

Morning Stiffness and more

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.