Blog #4--Fears + Tears

Less than a week to go. I've started to have anxiety attacks and have been very emotional. I am like that about change. I'm scared of it and agonize until it's over. I've been that way since I was a kid and I doubt it will ever change. My Obsessive Compulsive Disorder (OCD) has been ratcheted up a notch with the upcoming move. More on OCD later.

I've been in a huge fatigue cycle. No just the 'I'm tired because I feel crappy all the time' but total exhaustive fatigue. Again CFS is the culprit, but it's a bi-product of FM. Yesterday I got up at 2 PM and went to sleep at 5 PM. I slept until 1 PM today w/ the exception of shuffling to get meds during parts of it. I normally cannot sleep that much and today I felt not just sleepy but bone-weary.

Clearly, as much as I am trying to hold myself together, I am under a lot of stress. I've cried spontaneously many times over the past week and I am having one of my 'neck headaches'.

I also am fed up and tired of feeling bad. Now that I know there is a possibility of a light at the end of a tunnel (note -- I said possibility, not reality, I'm skeptical), I am noticing the many different things that FM does to me on a daily basis and I am so done living this way. Here are some examples, and yes, some are embarrassing to write but I don't care anymore at this point.

First, due to medications for depression and FM, I have been continually constipated for well over 3 years. I'm not talking just having a small trouble getting it out, I'm talking being blocked. I take a load of flaxseed and Colace but it never helps much. I have to use enemas and sometimes be cleaned out with the meds used for a colonoscopy. Many of you are too young to know what colonoscopy prep is like but it sucks, to put it mildly. How would you feel if you felt constantly sick to your stomach and unable to clear anything out of your body correctly? As an adjunct, I have developed severe hemorrhoids which are not any fun at all.

Along that line, FM causes Irritable Bowel Syndrome (IBS) and so my stomach is usually either nauseated or horrible heartburn. The meds for the nausea are effective but leave me feeling like a zombie and cause constipation. Catch 22 again.

Onto something else - I am hot and sweaty *all the time*. Gross, huh? No, I'm not in menopause but when I do get there it will be a breeze compared to this. All of my pain meds cause you to feel hot and I'm not joking, I feel like a furnace constantly. Now with the warm weather, my FM pain has lessened some but not enough to quit the pain meds. So I'm always in the shower getting the sweat off me or wherever I am at, I have an ice pack on my back. I can be watching TV and not doing any sort of physical activity and will feel sweat pool and run down my back. Really nice, huh?

Now we openly talk about weight here. I've already written about my weight before in the previous blogs but it is so frustrating. I am 5' 2" and should weigh about 125 pounds. If you saw me from the back you'd think I was 125 pounds but when I turn around I look like a replication of Buddha. 25 pounds have accumulated in my stomach and breasts. . I wish I could say I looked pregnant but I just look fat. Again, no matter what I do, it stays this way. I have a very clear-cut diet and I'm sick to death of it. Don't get me wrong, the Nutrisystems diet is a good one and I'll stay on it until I am back to 125, but I'm pretty sick of eating the same things over and over. Then I cheat and eat something not on my diet and then play catch up to not go over my 1000 calories, which inevitably I do anyway. I'm afraid because when I'm in treatment I cannot raise my arms over my head during treatment and 6 months after it and so I am not sure if I can get the pounds off during my time there -- which is a major goal for me. Let's face it, at 37 you need to do a lot of abdominal exercises to shore up your stomach and all that I can think of cause an extension of the neck that is not allowed. I feel like I've finally 'let myself go' as they say married women do. My self esteem is at an all time low, in the negatives I'm sure.

Today's pain is an 8.5 - 9 (note -- with each blog post, I am trying to give a pain level between 0 - 10, ten being the worst, so I can keep track as I go through treatment). I have been stiff in the neck for the past few days but hoped it wouldn't turn into a neck headache, but I was wrong. How do I explain these and relate the agony of these to you? If you have migraines, you'll understand some but multiply it by 100. My muscles from the clavicle running over my shoulders to my back feel like tight ropes. Today it felt like someone was tugging on those ropes or as if someone had their hands on my shoulders and were putting all their weight on them. Then the pain over my left eye started. Throbbing pain and usually making me very light sensitive. It lasts like that for several hours and then starts to continue to move up over my head, down into my neck/jaw area, and then down my back. I literally can feel the connection of these areas as they throb together. When not throbbing, they are like live electrical shocks that don't let up. It hurts to open my mouth because of the pain and I can feel my body contracting inward as a response to the pain. So that brings me to another thing I am beginning to hate -- ice packs. I must use 1-2 ice packs a day, whether for heat minimization or pain.

Finally, the usual suspects are here. . the points in my lower back are throbbing away and my calf muscles feel like I have a major cramp in them. I went to bed at 11 PM and woke up at 1 AM and am in pretty intolerable pain -- but I just took a Percocet at 11 and they are supposedly good for 6 hours. I am worried about taking more meds but usually that is what happens. I am very worried about the lessening effects of my pain meds and that puts even more pressure on this clinic working.

I have to be ready to leave on Friday AM and have not done anything to get ready. I have doctors appointments out the butt since I am leaving for 2-3 months and I need to pack and get my 2 cats ready to go. Thank the Divine for my mom who is willing to stay here. . I know she'll keep the house pressures off of J. and will take care of my other fur babies.

I needed to vent, to rant, and to get it all out so I can hopefully go back to sleep. Make no mistake, I understand that there are people in this world who are suffering more than me but this is not a competition. The reason I write about all the 'minor' complications is because many people don't get how FM can be so horrible. They think it's a matter of just taking some pain meds and off you go -- fixed forever. Not true and if you have had a long term cycle of FM as I have, the small things start to snowball and each one adds more and more weight to the disease until it all falls down like a Jenga game. Did you know that the statistics show that 40% of long term FM patients try to commit suicide? 40%!!!! That number should shock everyone and it should also make it very obvious that this is not some hypochondriac disease here, it's real, palpable pain that never stops -- one pain is traded for another.

I mentioned OCD above and if you don't know already, OCD is caused by mis-firing of the nerves/neurons in the brain. The clinic I am attending believe that OCD and other panic related illnesses can be caused and/or exacerbated by the log-jam in the neck area. It makes total sense because if all nerves must go through the congested area in order to get to the brain it could make the nerves/neurons causing mental illnesses to be possibly subject too. I'm pretty skeptical about this as I've had OCD tendencies my entire life but thinking over the past few years, I've had some of my OCD just become off the chart. Panic attacks caused by smell (yes, smell of food cooking), my ears have become ridiculously sensitive to noise. I avoid being in loud places because it's like my ears have become finely tuned. It also explains why I never want to eat with anyone -- I hear all the noises that a normal person makes when they eat but amplified. Just hearing normal noises of chewing or the clanking of a fork against ones teeth can put me on the brink of a panic attack. I've become aware of how loud some people breathe and it drives me crazy. This is insane! I know that I've never had these issues before FM and I've been treated successfully for OCD for well over 10 years.

I guess their theory sounds plausible but I'm pretty skeptical about it. I'd gladly deal with these new OCD problems and feel 100% better physically. Let's face it, I'd take 50% better or just some level of acceptable improvement.

Sick of the complaints? Well hopefully the next few months will have me saying the opposite. However, I wrote a lot of this not only to vent but to connect to anyone who is in my shoes. When I saw the video of the clinic I am going to I kept saying 'that's me, he's talking about me'. It was as if this man had taken over my body and was explaining every last problem I have. . so I hope that I can connect to others who have a similar situation. I know how validated I felt when I heard his video and am glad to know I'm not going crazy -- that this is really happening to me.

I hope all of you are tucked in your beds and in the land of slumber. My gratitude and thanks to all of you who are with me on this journey. Most of you are silent partners but believe me, I know you are there and I am very grateful for all of you.

l_l