Holiday Craziness

My fibro always takes a turn for the worse every December. It's probably a combination of things: the weather growing colder and damper, eating too much sugar, the stress of all the extra things to be done and the lack of time to properly take care of myself. Every year I cut more and more things out of my holiday to-do list and every year I still find myself feeling stressed, out of balance and in pain. 

I decided this year was going to be different. I cut my holiday to-do list down to the bare minimum, I started doing yoga every day, I bought The Trigger Point Therapy Workbook and some massage tools and I was making great progress on working out my trigger points and reducing my pain. Also, I had my new office, a private, quiet place of my own to retreat from the noise and chaos of the kids. My plan for a better holiday season was going great. 

Then, last Friday, the valve under my bathroom sink exploded and both upstairs bathrooms, our bedroom, my office (which is underneath the bathroom) and part of the garage flooded. Since then, we've had these big noisy fans and dehumidifiers running 24/7 and we had to have the bathroom floors, part of our bedroom floor and the ceiling to my office torn out. My whole routine has been turned upside down, nothing is where it should be and every day contractors have to come out and check the drying process or tear something else out. All my self care techniques have been lost in the craziness. I have lost my areas of sanctuary. I have nowhere to go to get away from the TV that all males have to have blasting at all times, whether they're watching it or not. 

Now, it's two weeks until Christmas and I haven't bought a single present, sent a single card or put up a single decoration. Am I feeling healthy, balanced and peaceful like I planned. Hell, no! My mind is so scattered I can't hold it together enough to complete the simplest of tasks and every day the pain creeps back more and more. 

I'm very sad about this. Why does every holiday season have to be like this? It's like since I decided to not participate in all the frenzied craziness, the frenzied craziness just finds its way into my life in another way. 

I might be able to pull it together once the fans are out of here. But that's not going to be today. The guy is here checking them now and he's not unplugging any of them. Now is one of those times that I really, really wish I could be like a normal person, completely not bothered or effected by noise and chaos. But you know how it is with fibro. Every noise is like a rake running across every nerve in your body. And, because of the fog, having things out of their place makes everything that much more difficult. Operating on auto pilot when your mind has checked out just isn't possible under these circumstances. 

So, once again, I find myself wishing the holidays would just be over already so there would be less to deal with. And I don't want to feel that way! Really, truly I don't. 

Judgment

I am so fed up tonight that I could literally scream. And to be honest, it would probably help my blood pressure some if I did! So what am I so upset about? People. Non-understanding, judging people.

Now these people come from all walks of life. They are in the grocery stores; at the parks; at church; and unfortunately for me, even in our families. My doctor calls such people Idiots and after what I've been through in the last 10 years or so, I would have to agree. Some are so, simply because they were never taught to be courteous or caring. Others were taught, but they just choose to think that God came down at some point and crowned them King of all judgment upon the human race.

You may ask, "What are these people judging you for?" Well, actually for everything and everyone in the universe, but more specifically to me, my disabilities caused by my illnesses of Fibromyalgia, Osteoarthritis, Sjrogens, Ankylosing Spondylosis and Depression. These are not all of my diagnosis', but are the most troublesome. I have been disabled by my illnesses for about 10 years now. I have suffered from them for much longer, but not until 10 years ago did it reach the level by which I could no longer function at work, home, church, etc... I went from being an energetic, bright, positive person in every aspect of my life, to one who can barely function in some of life's basest needs such as grooming, shopping, maintaining a household and working a public job.

I get judged from people at the grocery store because I have to park in the handicapped spaces, for which I do have a handicapped tag., and also for using the motorized scooters in the stores because I cannot walk or stand for longer than 10 minutes. I will literally fall in the floor due to the pain and numbness in my back and legs. These judgments are apparently based on their assumption that I am not REALLY sick or disabled because I look like a healthy 41 year old woman on the outside. (although this is gradually changing and I'm looking worse every day from the stresses of such illnesses).

I am also judged by people at church too. Usually because they will want me to participate in some function at church and I will decline. This may partially be my fault though because I usually just give a vague explanation of why I cannot participate rather than telling them outright that my body is broken and I cannot withstand the pressures of taking on such a cause. For example, I refuse to keep the nursery at church because children really make me nervous (I have anxiety issues for which I receive medical treatment) and ALWAYS give me a migraine headache because of the noise. I simply do not wish to be in charge of taking care of helpless children while I feel helpless myself once my symptoms start. Another such example would be singing in the choir. Now in some churches this is not a job that you are tied to, but rather a carefree thing that you do on Sundays. If you miss a lot, it's still OK. But in a lot of the churches that I have been in, it is like an occupation! Choir comes before EVERYTHING else in your life. But seriously, you are expected to be at every practice, definitely every performance and sometimes even traveling is required. As much as I love to sing in the church choir, I cannot guarantee that I'll even be able to make it to church every Sunday, let alone give a performance. Many days I spend in bed. All day. And it's not just on Sundays. So I don't think that I can comfortably make a COMMITMENT to be in the church choir under these requirements. I am not against the requirements, but I'm simply not up to the challenge and I don't think it's right to agree to the terms if you know you cannot keep them.

The last category of judgmental people I have to deal with is by far the most painful. They are my friends and family. These are the people who are supposed to love you unconditionally, but they don't. They love you when you fit into their plans, but not when you are unable to go out to lunch with them or go shopping with them or attend a 50th birthday party because you are laid up in bed and have been there for a week. Here again, it is all in how you are perceived by these people. They view you as the healthy, vital, carefree person you were in an earlier life. They don't see the days that you need your husband to wash and comb your hair because the fatigue is so great you cannot do it yourself. They don't see when you need help getting dressed. They don't understand why you can't bring a covered dish to the Christmas Dinner, or why you can't even come to the Christmas dinner, which is a 4 hour round trip drive, because you can't stand up long enough to cook. You can't remember how to make the dish, even with the recipe right in front of you, because you cannot comprehend the words on the recipe! Fibro Fog is an ugly thing!
These people, friends and family, get mad when you are simply too exhausted to drive out of town to meet them at a restaurant to eat. I've personally had to cancel such excursions so many times that now I will not even agree to go. They don't see that I'd LOVE to go with them, but I simply cannot. What's wrong with them coming to YOU once in a while? Why can't they drive to your house and order a pizza while you watch your favorite movies together? Why can't they EVER be the ones to sacrifice a little? Just because I'm the one who moved away doesn't mean that I should always be the one to make the sacrifice. I mean, am I being punished for moving away with my husband to start a better life for ourselves? I mean, come on.........it's the same distance for me to drive as it is for them! I love my family dearly, but they have shunned me for these very things. How my heart breaks each time I see them because I'm judged for something else I did or didn't do as they wanted it to be. I love my family, I really do, but because of some of their actions, I have been advised, by many people, but especially by my physicians, to simply stay away from them and drop all contact for a while. It just hurts me more and more , both emotionally and physically, each time something like this happens. Stress is a killer.

So what am I going to do about all this judgment? Try my best to just ignore the "Idiots" I come in contact with, Love my family and "so-called" friends, but limit my contact with them. And in the meantime try to find some support groups for just these types of issues. It's time I started taking care of myself, not everyone else. I can only do what I can physically and emotionally do and everything else has to go by the way side. If you're truly my friend, you'll stick by me. If you're really a family member who loves me, you'll wait on me, come to me, or meet me half-way. You'll be understanding or at least have empathy. Maybe you can't understand, but sometimes you just HAVE to believe a person at their word!

Do any of my Fibro and Arthritis friends out there have similar problems? If so, please let me know. My prayers are with you all.

Odd Symptoms

I have had fibromyalgia for many years now. I have been diagnosed for about 11 years, but suffered with it much, much longer. In addition to fibro I also have Ankylosing Spondylosis, IBS, PolyCystic Ovarian Syndrome, Sjrogens, Osteoarthritis, Migraine and Cluster headaches and God only knows what else!
Despite all of my diagnoses I still have symptoms that no one can seem to explain to me. The doctors tend to look at me like I'm crazy, so I've stopped mentioning them! I just wonder if other people with fibro have any of these same symptoms. Or even if there could be another diagnosis lurking out there?
I'm just going to list some of these weird symptoms and, frankly, wait to see if anyone responds.

Here goes:

1. Swelling of the hands and feet. Sometimes extreme swelling. I can't even make a fist with my hand. My fingers look like Miss Piggy! And very often one hand or foot is larger than the other. NOT always the left either.

2. Sudden Deafness and then Ringing in the ear. Usually just one ear, but occasionally this will occur in both ears at the same time. It starts with the deafness , then the ringing tone. It lasts between 20 seconds and 2 minutes. Then it's gone with nothing to show for it.

3. Extreme chest pain. More middle to left sided. It literally feels like I'm having a heart attack. However, my blood pressure and other vitals are perfect. This can last for hours at a time for days on end and then suddenly disappear. Sometimes however I'm left with the feeling of tenderness, as if my chest has been bruised from the inside out.

4. Complete numbness of my hands and arms, followed by tingling. I wake up like this every morning. If I sit with my arms resting for any period of time it will also occur. I am contributing this one to carpal and cubital tunnel syndrome. However , I am still baffled because I've already had the surgical release and nerve transposition done in the right arm and now I'm having these symptoms again??

5. Metal headaches. I name them so because I will get a strong metallic taste in my mouth when I experience one of these headaches. It is very severe, yet is not a migraine. Or at least not my usual ones. This can last from 2 to 12 hours. Pain medication will ease the headache a bit, not a lot, but nothing takes away the metallic taste.

6. Mid-thoracic back pain and tenderness. It feels much like the pain you experience in your back when you have a kidney infection, but it is located much higher on the back than the area of the kidneys. It actually is so sore that the entire area feels like it's bruised, but it is not. This does NOT go away, EVER. No pain medication or muscle relaxer has ever helped this pain.

7. Gnawing stomach pain that hurts from the front of my stomach all the way through to my back bone. NOTHING helps this except total submersion in heat. I have slept many a night in the bathtub with scalding water because it was the only way I could find any relief and the pain was so great that once I did find relief, I immediately fell asleep from pain exhaustion.

8. Sharp, burning, piercing, stabbing, throbbing, pin-pointed pain in various parts of my body. This is extremely painful. An 11 on a scale of 1 to 10. It stops you in your tracks. It can last for a couple of hours, but comes and goes in spurts of seconds at a time. There are no visible signs of any distress on the body part. This can be in a hand, foot, joint(ankle, etc..), breast, even my head. You can't walk on it, hold anything, put pressure on it.........NO USE of the effected area because the pain is so intense. It literally takes your breath away.

9. Pain in the bottom of my feet, as if they are severely bruised, yet they are not bruised at all. I literally cannot walk on my feet. I have resorted to walking on the sides of my feet when this pain strikes and it is occurring more & more frequently. This can last from hours to days at a time.

10. Swollen and sore lymph nodes/glands in my throat, causing sore throat and ear aches. This can last several days to a week at a time. Yet I don't have a cold or any type of congestion symptoms.

11. Twitching of my eyes. The eyelid will literally jerk or twitch. There is no pain associated with this, but I have noticed some blurred vision. Not sure if they are connected or not. This can go on for hours at a time.

12. Sensitivity to touch/feeling. I don't mean that I am sensitive for someone to touch me (although I am!!). What I mean this time is feeling textures. A rough woven piece of cloth, yarn, egg crate mattress pads........basically ANYTHING that is not smooth. It causes me the same irritation that some people experience when running fingernails down a chalkboard. This is an ever present irritation for me.

13. Hiccups! More and more lately I have been getting the hiccups and they are becoming harder and harder to get rid of. In fact, the only thing that works is for me is to completely hold my breath for 20 seconds and then exhale through my nose. Some days I get them 6 or 7 times in a day and they will continue until I do this breathing exercise.

14. Irritated and stuffy nose. This used to just been 1st thing in the morning or after I'd been lying down for several hours, but now it is constant. I can just barely breathe through my nose now. I don't have a cold and after a very painful series of allergy testings, I am declared to be allergy free! So what's the deal?

15. Bruising on my body, without me having hit or hurt it in any way. There is a possibility that I could hit it without knowing it and not notice the pain because I'm already in so much pain + on pain meds, or that I just forgot that I hurt it. But I really don't think either of these are true in my case. This happens at least once a week for me, probably more because I don't look at the back of my body very often.

16. Jerking in my sleep, or as I'm going to sleep. The doctors have diagnosed this as Restless Leg Syndrome. and this may very well be it because I don't know much about this ailment. However, it's not JUST my legs that jerk. It's my entire body.........ESPECIALLY my head. It will jerk from side to side, even when I'm not going to sleep. If I just get still and restful, my head will start jerking. I do get a kind of "irritated" feeling before it jerks sometimes, but often I have NO warning. This is both frightening and embarrassing.

17. Extremely dry, flaky skin all over my body. It does not itch. But if I do scratch it, I get white "ashy" marks where I scratched. Lotion does not help it very much either.

18. Dry, crusty , flat mole type patches of skin on my body. Usually brownish in color. These are generally small, 1/2 - 1 inch in diameter, but DO itch. And if scratched, they DO bleed. These do not come & go. They stay.......forever!

19. A very high illness/infection ratio. I stay sick! I have either a virus, sinus infection or bronchitis at least every 3 months. Usually more frequently. And once I'm sick, it takes me a while to get over it. Sometimes I have to take 3-4 rounds of different antibiotics before I get well.

20. Unusual cravings for food. And NO I'm not pregnant! I have dealt with these cravings since I was a little girl. In fact, I usually eat daily based on what I am craving. For example, one day last week I was dying for some sauerkraut. I haven't eaten the stuff in about 20 years! I crave beef before and during my cycle each month. And I crave lettuce or salads when I think I'm dehydrated. Many times it's weird stuff......like dill pickles & ketchup or vanilla soft serve w/french fries.

I have more weird symptoms than just these 20, but for sake of time I did not list everything. I realize I'm probably a freak! If you have an answer or suggestion about any of these, or if you deal with any of these yourself, please feel free to post or comment. Also, if you have any weird symptoms of your own, please list them also. It is my hope that I will find out that I'm not totally alone!!! LOL But also to find a reason or put a diagnosis with the dilemma!

Gentle Hugs to you all xxxxx
Teresa

Mourning your lossES...........

Before I start, I just want to say that I'm really feeling the effect of my fibro today. I'm in a lot of pain and the fibro fog is pretty serious, But I wanted to make this post today as it's been on my mind for several days now. So if anything doesn't make sense, feel free to ask questions......

Many times people (normal people) don't understand why we make such a big deal about having fibromyalgia, arthritis, etc..... whatever illness it is that has you down. The truth is they don't realize (and often even us sick people don't realize) how much of our life has been effected. A lot of times they think, OK, you're sick, so get on with your life already, but they have no idea just how much of our life has been taken away.

And for every part of our life that has been altered, we mourn it's loss. For example, not only am I sick and in pain 24 hours a day 365 days a year, I am also disabled from working. I really enjoyed working. I was a Workers Compensation Insurance Adjuster and I enjoyed helping people in need. So I not only mourn the loss of my health, I also mourn the loss of my job, my financial freedom, my independence........And the list goes on and on.

So people think, Oh, she doesn't work, she's got plenty of time to help us or do things with us, but therein comes my disability. I'm not only disabled from working a public job, but also from doing house hold chores and sometimes even to the extent of personal things. If I DID have the time to help, I don't have the ability to do it anymore.

When I lost my job, I also lost a lot of my friends. When I lost my ability to be really active in church I lost more friends and part of my source of entertainment. My sense of usefulness was wiped out.

But I'm just now realizing that I need to actually mourn each of these losses. I need to take the time out just to miss what I once had, so that I can move on with my life. It will never be the same, I can't say that it will ever even be good again as compared to what it was before. But if I can manage to 'kiss them goodbye' and then embrace life as it is now, I may be able to find new blessings in my life that may not have been there had I never gotten sick. One such blessing is that of my new Fibro Friends. They always understand what I'm going through now. They KNOW how to pray for me because they feel my pain. I would have never met them had I not been stricken with fibromyalgia and arthritis and migraine headaches. For them I am very thankful. I'm sure as life goes on I will realize other blessings GOD has given me to replace my losses, but it's only natural and healthy to mourn what you once had and lost.

If I could ask a favor of "normal" people it would be to give me time to get over my individual losses, help me see the new blessings in my life, but don't judge me because I'm having a hard time missing what I once had. Our lives have been virtually taken away and someones else life replaced it. It's still foreign to us. It takes a while to get used to this new life. And please, don't judge us because our life has changed. We didn't ask to get sick, but we accept it because we have no other choice. We have to live the life we're given, but we're not all dealt the same hand of cards and sometimes you have to fold and start all over again.