Does anyone really listen anymore?

I'm tired. This weekend sent me into flare mode. It was likely due to the drop in temperature by 30 degrees F (my American readers get confused when I use Celsius). We had rain and wet snow which never makes life easy for a Fibro girl. I had to attend an event on Sunday that was impossible to miss. My Mom was throwing a bridal shower for my cousin and the Princess is a junior bridesmaid. The King did not want me to go because he knew that I'd be unable to just sit and would be pitching in to help where I could. I tried to do the minimal but when you don't look sick and there are women older than you stepping up while young women sit round. I wasn't raised that way and I just can't do it no matter how much I pay for it later. The Princess was doing all she could to make sure I didn't have to do much but when you are in flare even the most mundane tasks can be too much.

A family member called today and I made the mistake, again, of truthfully answering the "How are you?" question. I don't know why I bother. She doesn't hear me when I try to explain fibromyalgia, she thinks it equates to depression and for me it doesn't. I've been depressed before. I've done the med circuit for post partum depression that morphed into plain old depression. It was the worst time of my life. Yes... even worse than dealing with the hell that is fibro. I can't imagine dealing with fibro and depression as so many of my fellow sufferers do. I am SO grateful that I have not had to deal with them together. I am tired of explaining that there is no magic pill. I'm tired of explaining that I chose not to take pain meds because I have addictive tendencies and very low tolerance for meds. I chose not to live my life in a haze... there are days I wish I could but I know my body and I chose not to put myself or my family through that kind of living. I told her that I over did it when I was already feeling poorly and now that I will have to pay the price for a few days while my body tries to recuperate. She made the comment "that is no way to live". I replied explaining that sometimes you have to do things you shouldn't do because you don't want to let people down. That if it would have been any other occasion on Sunday that I would have excused myself but bridal showers are once in a lifetime events. It is during times like this that I wish my skin would turn green or a neon sign would appear over my head so people would see that the one who doesn't look sick is sick and shouldn't push herself and has sacrificed a lot to be there for your special day and will sacrifice further as she tries to recover from doing to much to make it a special day.

I don't want your pity. I don't want your "cures". I don't want your diagnosis or analysis. I want your understanding. I want you to hear me without telling me stupid things like that is no way to live.... it is a way to live... it is the way I live and many like me live. It is the way our families live. It is not just me who suffers when I am sick... it is my whole family who pays the price.

I have an hour to pull it together before the kids come home from school. I just want to cry... I hurt so bad. It's a beautiful day and everyone is raving about the weather. I can barely walk from the kitchen to the living room without crying and the stairs nearly kill me. It is getting worse with every day and I'm tired. Tired of letting my family down, tired of feeling like crap, tired of gritting my teeth through the pain when all I want to do is cry. I work 2 days this week and Friday we are supposed to be going to see the Olympic torch run through the next town, we've even been invited to a special breakfast that day. The kids are really excited about it and we are taking them out of school to see this once in a lifetime event. I hate that the things that help me make it through cost money. Sure we have extended health benefits but they have limits to the alternative medicine things we can use and I'm nearly out of my allowed massages, the new year starts in May so that is a lot of months to spread it over. I could have meds for life but I have to ration the stuff that actually helps me a little bit. So frustrated and so sick of feeling like crap.

It's been awhile..

I've have been avoiding this place. I was doing pretty good for much of the fall and started working 2 days a week with the Chiropractor that comes to town from the big city. I managed to hold it together thru to Christmas. I wasn't always feeling great but managed to push through and live life somewhat normally. However, since New Years I've been really suffering. I'm not sleeping, even with the help of sleep aids, I hurt so much when I lay flat and no amount of pillows, propping, heat packs, lotions, etc seem to help. I've been having trouble on and off with my hands, particularly my right one. The other day I was trying to scoop roasted butternut squash out of the shell and could not manage the fine motor skills required to do that simple task. At times I can't open my water bottle or take the foil seal off my yogurt drinks. It's crazy and frustrating. I did get some relief from massage before Christmas when it was really bad. The chiropractor tried to do some treatments with the activator on my arm and hand as I couldn't bear a traditional adjustment. The King ran all the way into the city tonight to get me a new topical cream we saw on a commercial in hopes that it might offer some relief as my heated mittens and Dream Cream were not cutting it. I think the Voltaren helped some as I'm typing this. I guess we will see. The side effects and warnings for a OTC topical cream kind of freak me out so it's not something I want to have to use often. I've been taking Methocarbamol for pain. It's also OTC and while it loops me it isn't as bad as any of the script stuff I've tried. It takes the edge off a bit but doesn't take it all away. I wish there was a magic solution. I'm getting worn out. Day 11 of feeling like crap... no energy and always pain is not fun. I really needed to vent about it so I guess that is why I came here. The weather has changed drastically from the -25 Celsius to the +6 Celsius range which also wrecks havoc with my body. We had a ten degree difference in one day and then it proceeded to go up and down. This week is supposed to be a warm one and then we may head back to the deep freeze. Oh joy... that means my body will adjust to the new temps and then get hit with another whammy. Even the King is feeling the weather change this time and has his own set of hurts.

Looking for strength

I'm into week 3 of every day pain. I'm not very fun to be around. Weeks of gritting my teeth with no relief have me either weeping or lashing out in anger. I'm at the edge of it all. The King wants me to go back to the doctor... again I told him there is not a magic pill to fix this. My experience with meds is not a good one and I really don't need to have more problems. I'm tired. Tired physically, emotionally and spiritually. My brain races but my thoughts are a jumbled mess. I repeat myself with the important things I need to remember for everyone. I have a lot on my plate this month and I don't know how I'm going to get through it. It's not stuff I can slough off for others to do.

Today I'd hope to sleep the day away but I can't fall asleep. So I'm trying to rest... someone's dog won't stop barking but if I close the window I will boil to death.

I miss who I used to be. It seems pointless to even make plans because who knows where I will be at when it comes time to do them.

I had a diet pop without thinking the other day and I know that the rat poison in it is definitely a trigger. I've advised the King to remind me that it's poison to my body if I reach for one again.

Not my hands!!!

Yesterday I had such pain in my wrists, finger joints and elbows that I could not even type or navigate the laptop without cringing. You know that I'm in trouble when I can't use the computer. ;) I tried dream cream and finally hot packs to get some relief. After making supper I could scarcely hold a cup without biting back the tears. I spent the night heating and reheating my miracle bag to wrap it around one hand and then place that warm wrapped hand on top of the other. It is much better today. Thank God. I cannot begin to imagine how I will cope if this becomes a new regular part of my roving pain. My hips and neck are bothering me today. I can feel pain starting in my right shoulder and will get off the 'puter before it descends down my arm. *sigh*

Sleep...at last.

Took an amitriptyline at about 12:30 last night, fell asleep about 30 minutes later and slept til noon today. I've not been in a very good frame of mind of late. I'm lonely and I have been feeling so poorly physically. Trying to cope with my pain has made me edgy and miserable, add AF into the mix and you've got a less than pleasant Queen. We've had some family stresses to deal with as well in regards to the Jester's education. A comment made during one of our meetings really sent me down the "you have failed as his mom" path. It is my interpretation of what was said and I need to work through that.

The rest of the royal family is away right now, including the dog. I was supposed to join the King while the kids were at the grandparents. However, his one meeting turned into 2 days of meetings and it seemed pointless for me to sit in a hotel room feeling like crap when I could just stay home. We felt bad canceling the kennel on such short notice as she went above and beyond to find space for us. We'd like to go away in the summer and we totally trust this dog ranch to take care of our sweet escape artist. To maintain our relationship there we decided to send her anyway.

It's far too quiet. I have no plans and will likely take another amitripyline earlier tonight so I can just sleep again. I know I'm sleep deprived and that causes more pain and irritability. It seems like a waste of 2 days but spring cleaning will send me into a worse state physically and I don't have anyone to hang out with. It's spring break and people are away or frankly it's too much drama or pressure for me to try to be well and make plans. No one wants to hear about my woes anyway.

Stairs

In a perfect life I would live in a house with one floor but with a family of 6 I don't see how that will ever be a reality. My dream is for a home with a master bedroom and laundry room on the main floor. There would be a laundry chute and the kids would continue to be responsible for getting their clothes back to their rooms. Currently we live in a duplex that consists of many stairs... I have to take 14 stairs up to get to my room and 14 stairs to get to the laundry area. That means 28 stairs to take a load down plus 14 up to the living area again, back down 14 to put in dryer, up 14 to get to main floor and back down 14 to fold...you get the idea. While this doesn't sound like much to a normal person to someone in fibro flare you might as well be asking them to run the Boston marathon. It is just that daunting some days.

With our family we have to do laundry daily or it becomes an insurmountable mountain. My kids are begrudgingly helping but unless I keep on them asking if they have put on a load, switched it over, folded it, etc it just doesn't seem to happen. The oldest 2 have their rooms down there so I really don't understand why it is such a difficult task. They can see the laundry explosion, it's impossible to miss when they are going to their rooms. I've been such a mess lately that I just haven't been nagging them about every single step. The problem with that is that the bare minimal is getting done. It seems like every other day the King is out of underwear (am I ever regretting my purging of all his ratty stuff these days) or I'm out of socks. My kids are spoiled by the grandparents and have more clothes than they know what to do with. The littles could likely go 3 weeks before they'd run out of things to wear. The olders would be left a little shorter in the bottoms department due to their constant growth spurts but they'd fare ok ignoring the laundry for at least 2 weeks.

I just don't know what to do. Lately if I push myself to do some of the simplest things I'm in worse shape than I was to begin with. Some days personal hygiene, getting supper on the table and lunches packed for the next day is all I can manage. Truth be told that is most days lately. If I have to leave the house for any reason than I'm even more exhausted. It sucks but it is what my life is right now. I really need my family to pick up the slack but it's not happening. I'm tired of being the evil mother who is constantly demanding that they do their chores. We've done lists, contracts, etc. They know what is required of them but they count on my pathetic memory and when I'm feeling like crap I think they totally take advantage of that and then do the barest minimum of their chores. I'm so tired of it. I just don't know what to do anymore. I give up. Seriously... I'm just done.

So 56 stairs later.. and I'm exhausted. That only resulted in 1 load folded, 1 load put in the dryer, 1 load in the wash and sorting.... I have about 4 loads in just jeans sitting down there, add at least 2 in towels, 3 more in colors and whites and 2 loads of delicates. I don't even want to think of all those steps.

Off to email the King and tell him to buy himself some more underwear or start entertaining the idea of going commando.

Moving forward...

I had a massage today. Joyce has almost had to start over with me. My reaction to the healing by fire really did a number on my nervous system. She said she could feel my body shaking when I was just relaying the experience. We got some work done today but there is only so much one can do in an hour. I will go back next week.

I'm feeling a bit more energetic. I definitely think that is the Greens+ because I felt that way when I was taking them prior to the chinese herbs.

My knees have been really giving me grief and I have a ton of stress in my jaw, shoulders and neck. I've been good at drinking my water. I also took my bath in dead sea salts tonight. I wish my tub held the heat for longer. Why do newer tubs not hold the heat?

I'm feeling more and more at peace about my decision to not continue with Dr. X. I'm trying to give myself some grace as I work back through this rough patch into a place where I feel more in control of my affliction.

Today I'm thankful for my husband who is so patient and understanding through all of this and for my angel Joyce and her healing hands.

In full out flare!

I'm in a major flare at the moment. Took me a few days to realize it. I have horrid fog and unless it's written down or someone is reminding me I'm a mess. I hurt, I'm depressed and miserable.

I need to get a hold of my triggers and manage them better. I think the greatest reason I'm in the place I am is my inability to manage stress. I've been getting down and really frustrated with all this. Add life on top of that and I'm letting everything send me down. The King has had to travel quite a bit and with him being my only source of human contact and support this days it makes it harder on me.

I think that I'm going to look for another acupuncturist. I've decided that I have the right to not have to listen to his mumbo jumbo tape, to have him know who I am without having to read my file, to not feel less than because I'm sensitive and to not be left in the room alone when you do a strange new treatment on me that sends me off the deep end in a new realm of anxiety and fear. He can't be the only acupuncturist that has success dealing with people with fibro. I've read of others who have had good results. Now I have to source out someone new. My insurance is up til May so I have some time to sort this out. Meantime I may or may not see Dr. X for some straight acupuncture treatments.

I decided to start taking my Omega 3 + Joy again. Today is my first day. It made me feel so good and I only went off it because Dr. X didn't want anything interfering with his herbs. I don't believe his herbs are helping me at the moment and I've told him as much. I just can't hang on like this waiting for a maybe upswing again. I'm at the end of it mentally.

What do you think? Am I giving up? Should I hang in there with Dr. X? Is it about time I went another way? I just wish there was some clear path to take. *sigh*

My head is killing me

I thought I was starting an upswing but that was short lived. I'm really foggy today so I hope this makes sense. Last night I tried one of the sleeping pills my doctor had given me quite some time ago. I've never tried it before but I really needed to just sleep and I was in so much pain last night. It took awhile to take effect but it then knocked me out til almost 11:30 am :(... obviously not something I can take on a regular basis.

Yesterday I totally crashed all day. I'm so sore and weak. I'm extremely frustrated as well. I'm at a loss as to what to do with my treatment. I just wish there was a clear course of action to take that would give me the results I so desperately want.

Couldn't do it...

I just couldn't bring myself to go to Dr. X this morning. I was getting anxious again, the weather is pure crap and I just couldn't do it. I called and canceled. My next scheduled appointment is 2 weeks from now. I'm just so conflicted. I want to be well but my anxiety is through the roof this morning. I don't have anxiety attacks. I've done depression but not this panic thing. It's not comfortable territory for me at all. I'm not sleeping without aid of something this past week. I'm tired today.

Trying to fight off the plague

I've been doing all that I can to fight off the plague that the King has had. I'm starting to worry that it is setting in as it hurts to breathe. I don't have a sore throat, cough or runny nose but last night I had horrible pain whenever I took a deep breath. I also had weird pain down my sides starting around the boob area and running down a few inches. My energy is zero and I've been having trouble sleeping again. This morning was a complete write off for me as it hurt whenever I took a good breath. I had to get my act together to get supper on early as we had PTA tonight. I had to get some support to unload this fundraiser that has been a bust with the parents. Unfortunately PTA lasted forever because we had our illustrious school trustee aka our mayor and rambling moron grace us with his presence for too long. I came home to AF, thank goodness the my liner held out as I wasn't expecting her arrival. (I only took my laptop bag and not my purse tonight. Could have had a jr. high flashback!! :S) So now I'm not sure what to think about my struggles- fighting off the King's disease or just my pms hell or maybe a mix of both.

I wish I wasn't having trouble sleeping again. I should have maybe booked a massage this week but it's a short week with school (early dismissal and friday off) so I didn't bother. I don't even want to go see Dr. X on Monday. I need to sort out how I feel about that all still. I'm thinking that my 2 x a day herbs are preventing me from sleep even though he has told me before they shouldn't keep me up. I try to take my first dose when I first wake up, which has been pretty consistently 930 am (shocking) but I don't always remember because I'm braindead these days. Then I try to take my 2nd round before the kids get home from school but again that doesn't always happen until I see my reminder on the fridge when I'm cooking supper.

I really should try to go to sleep. It seems that when I'm laying flat that my breathing pain is worse but when I prop up on a bunch of pillows I can't sleep. *sigh* I know I'm a whining baby. I'm getting really tired of feeling like total crap and my silver lining ability is pretty much non-existent.

Some days I just want to cry

I got rid of my self-acupuncture pads late last night. My ear was aching and I'd had enough of the headache from Monday already. I felt so out of sorts still and was hoping that I'd alleviate at least one of my symptoms by taking those retched bandaids of pain off. My headache is gone as well as my earache. Thank the Lord! I had to take something for the pain last night which made me sleep like a log once it kicked in.

Since I woke without a headache and feeling a bit better for the first time in over a week I got right to things and hopped in the shower right away (I normally have to muster up the strength to do this and I dawdle around in my jammies for a few hours first). The laundry basket was overflowing so I hauled it downstairs (normally I'd call on the King but he is not feeling well today). I nearly slipped on my way down the basement stairs which should of been my first indication that I should not venture down there. I could not believe the mess. The Prince and the Princess had been assigned the task of keeping up with the laundry by the King. They'd been read the royal riot act earlier this past week when he ventured down to the dungeon for something and saw the disaster (laundry and their rooms). So they'd had a week to get their act together and were even grounded from TV a few nights so they could do so. Unfortunately the King did not follow up and check their work. I just couldn't bear the stress of a disaster this past week. I knew that any stress would send me off the deep end physically so I avoided the dungeon. I asked them several times if they washed this load or that load, if there were more things to wash, etc. The Prince even chose to stay home while we ran errands on Saturday so he could catch up on all the laundry and his other chores (fools we are... he obviously played Wii and watched TV only doing the chores that would be most noticeable to us).

I'm so disappointed on so many levels. *sigh* I had been fooled into thinking that the Prince was actually learning how hard this is on me and had decided to take a more responsible approach to his chores and a more respectful way in treating me. He had spent 4 days with the royal grandparents and came back with some humility and a better attitude (fool I am to think that would last but thankful that my Mom had some empathy for me and that my Dad took the time to spend some time with his oldest grandson one on one). The Princess is starting to slack in the helping department but I think that is largely due to the Prince treating her like Cinderella at times and expecting her to do it all. I try to stay on top of that but she carries the burden rather than sharing it because she sees I'm suffering. I hate that she feels the need to try to protect me and I need to talk to her again about letting me be the parent despite my situation. It has been so hard for me to not be all my family needs me to be. Some days it takes everything I have to ensure that their is dinner on the table, lunches made, homework done and everyone is where they need to be that night. Many days that is all I am able to accomplish. I feel like I fail them often. I've learned to let some of the small things go and I do not have the house I used to have in the way of cleanliness, organization, over the top meals and homemade things for lunches.

So here I sit wishing for a laundry fairy and mourning, once again, what I once was.

Disappointment

I had to cancel lunch with a friend today. I'm really disappointed because it's not something we are able to do often. Who am I kidding.. it's not that I have a heap of friends irl. She was very understanding but I still feel awful canceling. We were meeting in a nearby town and the thought of doing my hair, driving (means I can't even take OTC pain meds, yes my tolerance is that low) was just way too much for me today. I hate it that my body is grieving me so right now. It hurts around the muscles in my chest when I take a breath this morning. I'm going to have to break down and take something which will mean a loopy few hours but hopefully it will take the edge off the owies.

It has been a difficult week and my energy levels are so low. I feel like I am losing my mind at times because my brain is so foggy. There are times when I could swear I've had a certain conversation or sent an email or even made a blog post but it has never happened. Makes me feel like I'm on the edge of dementia at times. I need to get back onto my lists to keep things in order. I haven't had to do that for a long while and got out of habit.

I just don't know what to do anymore. On Monday I see Dr. X again and I'm going to talk to him about the herbs. I'm obviously missing something that I had in my concoction in December. I just don't know why it went from helping me so much to it seemingly having zero effect. I'm starting to slip into a bit of the blues which isn't a place I ever like to go. It's just been difficult to go from feeling so great to being back to this. This is not the life I want but it is the one I have. I need to find a way to get on top of this mentally and spiritually. Right now I feel like I'm wallowing but I'm so darn tired I can't seem to muster the strength to fight.

And so it begins

I have been really feeling the need to talk through my struggles lately. I have difficulty doing this in my real life. I'm not dying and while this affliction robs me of so many things I know that I am so blessed compared to the health struggles that many have. So I decided to make this a place where I can come as some faceless and nameless person in cyberspace, where I cannot be judged by the looky- loos that know me irl (when you've been labeled a hypochondriac by crazies who think they know you it's hard to be honest and real about how you feel) or feel like I'm burdening those that know me in cyberspace with my whining.

I've been battling this officially (that means doctor diagnosis) for about a year but when I look back at things I can see this has been a part of my life for so much longer. I am blessed that I finally found a doctor who listened to me and is open to me trying other ways of managing this than painkillers, antidepressants and drugs. (I know that those things work wonders for many but I personally need to exhaust all other options before I can consider going back on anti-depressants (which nearly killed me). My tolerance for pain meds is very low and a mother of 4 has a hard time being an incoherent zombie). I'll share more about my treatment later.