Monday, June 11, 2007

My own experience with CFIDS/FMS

What my Illness is doing to me

I have been experiencing abnormal exhaustion, debilitation, and have even been incapacitated.

I wake up in extreme pain and sometimes my legs, arms and feet are cramped up. My husband grabs my all temp therapy pack and goes to the kitchen to warm it up. He wraps it around a towel and places it beneath my lower back. Meanwhile, I try to move my body into a side position so he can insert the therapy pack underneath me. He gives me my morphine and I lay there waiting for the medication to take the edge off the pain. I also take Provigil for alertness. I am currently taking two tablets of 200MG in the morning. I have had to increase it to three and I am still having problems staying alert and I am lethargic.

At some point I sit up with the help of my husband and then I rest, then he walks me to the bathroom. I later go stand by the nearby sink and rest, then brush my teeth. My husband runs my bathwater and helps me in and out of the tub. I am exhausted after I have taken my bath or shower and require help getting dressed. Then I head back to bed. When I wake up I do not feel like I have rested, I feel exhausted. My husband tries to speak to me and I cannot stay awake very long. The Provigil helped when I first started taking it, but it is not working anymore.

I stay in my bedroom and rest. I am very sensitive to noise and light. I cannot even remember the last time I saw any type of movie or show on television. My concentration is bad, my memory is getting worse. When I did work, I worked at home and rested and slept, nothing else. My entire week-ends were spent sleeping and taking medications so I could have enough strength to work during the week. I can not even get up enough energy to look for work or update my resume. My sister is typing this memo for me. It has taken us a long time to type it because I loose my thoughts. When I know I have to go to the doctor, I make sure I rest in bed all day long for several days before the appointment and only get up to take a bath and brush my teeth. I sleep the rest up until it is time to get to the appointment. Most days I stay in bed and rest and nap a lot.

I do not go out anywhere. My family has to come to my house to visit me and my friends call, but I get tired easily, so I do not talk very long. When I first got ill my husband had to buy me very small and light purses that I could carry my pills in because I do not have the strength to carry much.

When I am in bed I do try lifting my arms, legs, turn my toes up and sometimes my husband places a long bed massage mat so my circulation starts up. I do try to move but I just do not have the energy or strength.

Do you know what it feels like to have the flu? That is how I feel all of the time. I also run a low grade fever, have a sore throat the majority of the time. I get the chills for no reason. I get hot, I get cold, it is very weird. At different times of the day and night different parts of my body go numb. Some areas feel like I am on fire. A burning sensation on the inside and yet it is numb because I cannot lift my leg or arm. My hands, arms, stomach, back, bottom, thighs, calf’s and feet go to sleep on me. If they are not asleep, they are cramping and I get knots on different parts of my body. The knots are obvious where people can see them. They look like a ball under the skin and slowly go down with massaging or just leaving it alone. One knot on my ankle once stayed there for over a week.

I cannot remember the last time I did any type of housework. I try to help by asking my husband or children to drop the clean underclothes or towels on the bed by me and I will fold them. It takes me a long time, but I do it. There have been times I was unable to do it because I was just too exhausted.

My bones also hurt around my fingers, joints, knees, feet and ankles. My ankles get swollen a lot. I stopped drinking anything but water to stop the water retention. It still does not work.

I have continual nausea and take nizatidine for acid reflux. Sometimes I will not eat because my stomach cramps and is very tender. I get an upset stomach before I have to go to the bathroom and then the cramping and pain is sometimes very painful. I go from being constipated to having diarrhea, then I improve and the cycle starts again.

I have tried eating different foods to figure out what might help me and what gets me ill. I forget and end up in trouble again. I tried keeping a journal but would forget to write things down, so I stopped. My writing was also getting so bad, nobody could read it, not even myself.

Headaches are always there, the severity varies, but I have them daily. The pain is on my temples and forehead and on top of my head. The inside of my ears itch a lot. Sometimes I get sharp pains in my ear. The doctor has checked my ears, they look fine. I just do not understand all of these things happening to me.

I have broken out in rashes from the medications I take and changed medications and also have cream to rub on my rash. When I go out to the doctor my arms get red and a rash. I cannot go out without getting some type of rash.

I cannot stand or sit for long periods of time. I get exhausted and very fatigue. I feel incoherent at times and also have panic attacks. I take medication for the panic attacks.
I also have a slur to my speech because I am too exhausted to speak. My husband tries to ask me a question and I try to answer, but I just cannot keep my eyes open and I cannot speak or wake up. I also suffer from dizziness and feel clumsy. I have gained weight from the paxil I take and from inactivity. My hunger is very unbalanced. Sometimes I cannot eat enough, other times I have no interest in food. My husband tries to make sure I eat and drink more than 8 ounces of water.

My eyesight has gotten worse. I need a new prescription because my glasses broke when I dropped them on the pavement going to the car to go to the doctor. I cannot afford a new pair of glasses, so I use reading glasses.

I have to ask people to repeat what they say to me because I cannot grasp what they have said. Sometimes I cannot even understand what they are saying. I have always had problems hearing, but never trouble understanding a word or trying to make out what they are doing. Does that make sense? I constantly ask what day it is and what month we are in.

There are times I am focused and can talk intelligently but then there are times I am confused, forgetful and cannot even remember what I want to say. I forget names, places and past times. It is especially bad when I am having a very bad day and when I am very very fatigue.

Before I got sick, I could have a conversation on the telephone, answer the person next to me when they interrupted, and listen to my other staff members conversations and tell them when they are stating something wrong about a transaction or activity they are planning. I would also have a programmer sitting in front of me asking me questions, I could jump from one conversation to another without forgetting anything! My staff was amazed, I thought nothing of it. Now there are times I cannot even focus on one thing at a time. I get what they call Fibro Fog. I try to kid about it, but it upsets me and saddens me because I am no longer the person I was.

I remember one time when I was trying to work and I was facilitating a teleconference meeting, I started to introduce the people in the room and stared at them blankly. I could not remember their name, they softly said their name to me, one at a time, I literally could not remember anyone’s name, I ended up saying “Oh, and I believe I am almost here mentally, please forgive my pace, I will try to speed up the meeting”. I was so embarrassed and after the meeting I told my boss and staff I was having a Fibro Fog moment. My boss expressed his concern and asked me if I needed to go home and rest. I said no, I just had a fibro fog moment, it will not happen again. I did not sleep well last night. I have been fighting this illness and trying to pretend it does not exist. That it is temporary. Well it is not and I am getting worse. I am not happy about filing for disability, but I cannot honestly function effectively anymore.

I have posted this so people can understand what we experience due to this illness. It is not pleasant. Share this post with your family and maybe they will understand.

I pray and hope this information has helped someone today.

Everything on this site is copyright Viv Walters


LindaMeee said...

Viv. Wow that sounds alot like I have. I am sorry but I cant remember how long have you had fibro? I was dianosed about 8 mos now and had symptoms for awhile before they finally diagnosed. I have many of the symptoms you listed but also I have a low grade temp..sore throat and ear aches. I had not mentioned to pan management about any of these because I had told pcp. and I was only second fibro pt she said she had seen in office. and she always said it was allergys.

Fibro Viv said...

Hello LindaMeee,

I believe I made a comment about your response to my experience with this disorder. I also suffer from ear aches...they itch and ache. I live on cough drops because of the constant sore is not like a normal persons sore throat (you cannot catch it from me), because I always have one!

I run a low grade fever and first started having symptoms in late 1997! It has been 10 long years!

Hope you are feeling better!