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Can You Come for a Visit? My ME/CFS Says No
My daughter and son-in-law just had a baby last week. We are thrilled. But we won't be able to see the baby or hold her any time soon. We won't be able to take over little gifts or help out with housework or babysitting.
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Talking on the phone causes PEM

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by minkeygirl, Mar 25, 2014.

  1. minkeygirl

    minkeygirl Senior Member

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    I was on the phone about 2 hours total yesterday dealing with getting new TV and internet. Today I feel like I ran a marathon. This phenomenon started about 2 or 3 years ago. This is probably the single thing that really made dealing with life hard. How can you function and take care of things when you can't talk?

    In 2012 I found, accidentally, that taking Acyclovir really helped. I could have a conversation for over an hour and I was fine. I could talk every day and I was fine. It saved me. Not so much anymore.

    I know others have this. It really sucks.
  2. Calathea

    Calathea Darkness therapy

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    That sort of phone call is far worse than having a nice chat with a friend, I find. The telephone trees, hold music and such really do my head in, and it's usually deeply frustrating and may involve climbing on chairs to look in files as a bonus. Could you get someone to help with this sort of call? My support workers have been total angels with talking to Scottish Power and my blasted household insurers on my behalf.
  3. shannah

    shannah Senior Member

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    Another necessary accommodation. There's so many things one has to let slide with this illness in order to just exist.

    For the last 12 or 14 years, I use the phone only in extreme cases - maybe twice a year. Everyone who knows me knows if they want to contact me they need to email.

    If you found acyclovir helped at one time, wonder if you would be a good candidate for Pridgen's combo.
  4. minkeygirl

    minkeygirl Senior Member

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    I have no one to help me. I have to so everything myself.

    Even if I did, explaining what I needed world be just as exhausting, so its just easier to do it myself.

    @shannah I never heard of Pridgens combo. Can you explains?
  5. minkeygirl

    minkeygirl Senior Member

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    One thing that helps is when websites have Chat. I use that a lot but sometimes you just have to talk to someone. This started because I am dumping my cable company and had to get set up with a satellite.

    I called 2 places and they would not give me pricing until I confirmed and I would not do that.
  6. minkeygirl

    minkeygirl Senior Member

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  7. shannah

    shannah Senior Member

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  8. Sushi

    Sushi Moderator and Senior Member Albuquerque

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  9. minkeygirl

    minkeygirl Senior Member

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    I know! I saw the thread today.
  10. Ondine Ly

    Ondine Ly

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    I totally get this.

    I have lost what I thought were good friends over this as they couldn't,t get their heads around me finding it exhausting to take calls.

    One friend in particular, going back a few years now used to want to call me every day and expected hour long chats, needless to say I had no choice but ignore her calls which would then upset her and it would become a stressful situation all leaving me in flare up mode.

    Needless to say I,ve had no choice but to drop these friendships!

    I dread it when I have to call one of the utility companies up, I have to wait until I,m having a good day, however long that takes and then calling them is my one activity of the day, I always get PEM.

    Infact I get the worst PEM from talking in general. Having any conversation that lasts say more than 10/15 mins with any one individual can put me sofa bound for a day or 2. Communicating on line etc is always better as I,m more in control of the speed I do it and can take breaks, less going on for my brain etc etc...


    I take pregabalin and sometimes double up on the days I have focused talking to do, it doesn't,t stop the PEM but makes me calmer so I guess I,m using less energy.
    Last edited: Mar 26, 2014
    justy likes this.
  11. adreno

    adreno 3% neanderthal

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    Tundras of Europa
    What kind of phone do you use? Wireless? Cellular?
  12. minkeygirl

    minkeygirl Senior Member

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    @Ondine Ly I can only read parts of your comment. Please go back and put paragraphs every other line or so.

    @adreno. I have a land line that I use most of the time. I have a cell too but rarely talk on it. Makes no different. It's the problem of feeling like I have no air in my lungs to start with. Like trying to drive with an empty gas tank
  13. lnester7

    lnester7 Seven

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    @minkeygirl - Any activity that I raise my hands over my chest crashes me (Orhtostatic intolerance) like haridrying my hair, putting stuff away in kitchen cabinets......Cel and phones I use hands free. I also get overstimulated with noise (use earplugs everywhere, even when family is around just takling).

    Now I can do these things if I am on the vassocontrictor (midodrine) I can tell when my medicine is running off because this is the first thing I cannot do, raise hands much.
    Marco likes this.
  14. taniaaust1

    taniaaust1 Senior Member

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    I have that issue too but no way could I be on a phone for a couple of hours.. Im struggling after 10-15mins on a good day (as its so hard to hold focus that long on someone you cant even see) and cant do at all on my poorer days. Its very hard as I do live alone. Ive basicallly defriended someone for too many phone calls as it was being too draining on me.

    I restrict my phone call outs to my better days and restrict to only 1-2 calls out per day be it to family or an important call as they can be so draining for me. Unfortunately I dont deal with my emails either and get overwhelmed with all the stuff which ends up going into there (I dont even check all my emails).

    The other form of communication I can do okay and keep up with is my phone textes.
  15. Hell...Hath...No...Fury..

    Hell...Hath...No...Fury.. Senior Member

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    I think i lost most people in the early days purely because of phone issues and no longer being able to do it. People ringing constantly i still believe may have contributed to me causing more damage to myself in the early days.

    Eventually when i realised that someone ringing me to talk for an hour was stopping me from doing anything for the rest of the day including eating etc. i had to draw a line.

    It was then that i also developed a stalker who was once a friend/acquaintance. As soon as i explained that i was too ill to chat this caused him to be 'concerned' and rang me even more.

    I didnt have the strength to hold the phone to my ear and on one occassion he was rabbiting away and i actually threw up while on the phone and even that didn't make him realise to let me go, he was so obsessed with talking to me.

    That was the final straw for me, i had to cut off from everyone and i lost everyone... Except him... His calls kept increasing, my mam would answer, explain i was very ill but of course he wanted to hear it from me and it wasn't physically possible. His calls increased to 15 times a day up to 3am.

    There were only landline phones back then so we had to unplug the phone at night or the ringing would have woke my dad and if that happened my dad would have killed me.

    My 'stalker' thought my mam was trying to keep us apart so, he'd start parking in my street trying to catch me going out. Even after a year of me being bedridden, he was still trying to catch me and asking people in my local pub about me.

    The phone calls continued for a few years, all this while i was seriously ill in a pitch black room and i knew half the time he was sitting watching outside. He would write tons of letters, some nice, some slightly threatening, anything to get a response. He hasn't had a response for 15 years, and even now once every couple of years he tries to make contact.

    Some people don't take well to a phone ban hahaha. It was hard losing people who were my friends, but i discovered it was even harder 'not being able to lose them too'

    I still can't talk on the phone, but thankfully now, mobile phones and internet exist for written comms.

    If i do have to make a call i find it easier to do a utility call or the like rather than a friend. Calling a company requires less energy than with a friend as a friend requires an additional emotional input from me to some extent and a more upbeat chirpy voice which is also draining. My voice can be listless and monotonous when talking to a company and no one cares and i can hang up in a push.

    I think because of my friend/stalker experience (and i've had two others apart from him over the years) even if i recovered, i'd never entertain phone relationships ever again. But while ill, its as good as having an energy vampire clamped onto the phone handset sucking out my lifeforce through my ear lol.
  16. Misfit Toy

    Misfit Toy Senior Member

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    I let go of any friend that calls too much or texts too much. It's not normal and it's needy behavior, which we don't need. And those friends don't care about how ill we are. They only care about them.
  17. SickOfSickness

    SickOfSickness Senior Member

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    Speaking and socializing give me PEM. Holding up a phone gives me PEM too. Having my arms raised is big.

    With a phone headset I used to be able to talk for over 30 minutes, and without the headset I would be hurting in 2 minutes of holding the phone. That's a very big difference so I had to get in the habit of using it.

    Most headsets are not completely clear, so it's harder for people to understand, but the right headset is a wonderful tool for me. When I was talking on the phone more, I kept a backup headset in case mine broke or went missing.

    If I don't have a headset, I can also lie down and have the phone mostly supported by the pillow. Not as good as headset but much better than holding the phone up.

    I use speakerphone mode if I don't have headset or don't want to lie down. I wish I could talk by phone without the PEM.

    To reduce your on-hold time with companies, try a search at http://www.gethuman.com Many companies are listed with better phone numbers that get you in quicker, or numbers where they call you back.

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