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Working with CFS is sooooo hard

Blog entry posted by lnester7, Jan 9, 2013.

New Symptom: as I have angina pain (which is back) I am having kinda the same contraction pain in lungs. Is different and never felt it before, is like if I can't sustain the regular function of the lungs. I also have trachea pain, like somebody is sitting on my throat/upper chest. Breathing is a lot of work.


So I broke my normal routine because I have visitors at work, it requires to sit on regular chair all day (Instead of my office recliner) and I have to move and be upright a lot.



Day 1: I made it with a 16oz of redbull. At one point I was so tired that had to take break and go to lay down in my car in the cold. At the end of day, I was in so much pain, My neck felt like it was screwed to my head the wrong way, the pain was so bad I wanted to go to the hospital and get something strong (I did advil and my prescribed pain med). I went to bed at 7:30pm until 7 the next day. I woke up better on day 2 but still tired.

Day 2: I was a little better after all the sleep. I took the lunch break to lay in my car and rest as much as I could. When I got home all I could do was sit on couch, couldn't help my kid or do anything in the house. I have been having swallowing issues. I tried to drink juice and could not even swallow that. It comes and goes, is not a permanent thing, it is just so grouse to have to spit what you swallow. and I am scared because I never know when I can or cannot swallow so I am being very careful when I eat or drink. I think is OI related.

The regular stuff are a lot of effort again, I can't take showers in the mornings to go to work ( I can do it at night after some rest), I have to minimize the trips up the stairs again.

At night the Muscle pain (deep close to the bone) was so Intense I wanted to cry like a little girl. It is such a different pain like acid like or something. I really need to get rid of this one.

Day 3: I am tired and trying to make it through the day. I am wondering why I work and not try to just stay home and not feel this miserable. This feels like torture. I think only another CFSer can understand the word torture when all you are doing is try to sit upright and pretend to be there. At this point I can't think or reason, the pain is intense everywhere, Neck, muscles. I feel sad because I can't help in the house. I am just trying to make it to the end of the day so I can lay down.
heapsreal likes this.
  1. Lynne B
    Hi, Inester7 and heapsreal, my sympathies, I'm older (now 70) and now retired but I know what you're both going through. The best thing to do, if possible and if you can afford it, is to drop down to part-time work. In my last few years I worked just two days a week and with a bit of fudging through the day I managed a 7-hour day. (For me, fudging involved getting up from my desk quite often and going to either the toilet when I didn't really need to or the kitchen to fiddle round a bit and make a cup of tea—anything for a break away from the computer.) heapsreal, I think you're right about the adrenaline getting you through the day and know what you mean about channelling all your day's energy to your job.

    It's easier for me now, of course, although I'm doing postgrad study part-time and that's demanding enough, particularly when there are chapter deadlines and conferences, which I have difficulty sitting through.

    Inester7, I know what you mean about swallowing because both my husband and I have difficulties in that area. And for me, the kind of tormenting pain I get is in my feet, which swell and burn in the summer heat. Every night I have to sleep with them hanging over the edge of the bed, (not touching anything!!) to stop them getting warm and waking me with stabbing pains.

    What can I say except what I told myself this morning—just get on, do what you can, focus on what's happening now, don't dwell, we'll get there, (what else can I add in the way of the tough love I use on myself?)

    thinking of you, Lynne

    Sorry, this message seems to have landed in the middle of the page and I can't figure out how to move it.
    lnester7 likes this.
  2. heapsreal
    and counting the days until your on days off to sleep and rest so you can do it all again, bugger? I have just had 4 weeks annual leave, been great sleeping and not being woken up by the alarm etc but i go back to work on monday, that feeling of dred going back and grinding it out again. Im 42 y/o so got 23 yrs and i can retire???? if i make it that far lol. I have improved alot in the last 12 months but when feeling my worst i would always consider disability but the process of going through it all and cfs/me not taken seriously seemed so stressful to go through. to this day i still dont know how i did it. I did go part time and used alot of sick leave. I think the adrenaline in my work may have kept me going and functioning there but when at home i would collapse. two things i really hated was waking up to the alarm clock or going to sleep at say 10pm and be awake at 1130pm then being awake all night and come 7am still considering going to work for an 8am start, considering it out of guilt and knowing i wouldnt last till 6pm. I did try it a couple of times but i would then be off for a day or 2 afterwards, so if it happens now i just no not to go in. When i didnt go to work those days i would not be able to sleep during the day because i just couldnt, my brain would be on fire until later that night i would take my sleep meds again and hope like hell they would work, generally after not sleeping for so long i would konk out. its an aweful feeling and i have those flash backs of this when nearing the end of my annual leave. I have improved but the scares are still there. work sux, be nice to win lotto.
    lnester7 likes this.