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Pacing

Posted , 15 users are following.

Ravenwood
Ravenwood

I'm hoping you guys can shed some light on an idea I've had for awhile.  I was feeling really poorly when I was going to work every day and working for 10 hours.  Now I work from home and work only 7-8 hours a day.  I feel better than I did when I was working at the office.  But most days, I still am so tired and in pain that I feel like I am dying.  So I was wondering, if I, theoretically, stopped doing everything, would I feel better still?  Or is there a point where there are no more positive returns on resting. 

I just wonder if I threw myself in a hammock for the rest of my life, would I stop feeling sick?  I am so tired of being sick and tired.  I would just like some relieve from the never-ending suffering.

What do you guys think?

1 like, 36 replies

36 Replies

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  • jane68156
    jane68156 Ravenwood

    Posted

    Hi that never ending spiral is awful!! Working from home should be better for you as it relieves the pressure of having to be out everyday by a certain time. Pacing is definitely they way forward. Make each day individual and see how you feel each morning. If you need a rest before you start work, take 15 mins to lay and relax quietly. You may then feel able to do some work. Breaking the day up is definitely the best way. Maybe you will still need to cut down on your hours and build up gradually. I still have a rest each afternoon after 16 years. It's part of my day, I sleep and it helps me to do more. Good luck😀
    • bronwyn97278
      bronwyn97278 jane68156

      Posted

      Hi Jane, Ravenwood and others;  yes I know that I "cannot do without that extra sleep" of an afternoon.....if  I don't, there is No way, I am approachable in the evenings, as sooo sore and exhausted, that I can't even attempt cooking dinner/cleaning up etc....has been like this for quite a few years.....and we all say, the fact that even when we wake up in the mornings, we really havn't had a "refreshing" sleep, so the fatigue is always there.....I Really don't know the answer to Pacing, as I know that some of us have to work for financial reasons, but how they manage it, I Don't know....I also say, that when we do "retire", it brings with it, other issues re "outside social contact", and the depression that brings.....if there were some Real Help in all of our communities to address these issues,(and not just for the Fibro/CFS but all who have the Mental capacity, but suffer from a debillitating condition that doesn't allow us to work), I don't think there would be the Depression....at least not as much???   People have said to me, why not do some Volunteer work, but even that needs Reliability....and this I know I can't be sure of either....as we all know, one day at a time, as we don't know what/how we are going to feel the next day???  and of course there is the driving to get to these places.....too many questions, without appropriate answers..........hoping all having a better day than me here (am at a time of too much intro-reflection today)............redface   Bron
  • end
    end Ravenwood

    Posted

    Hi All,

    Interesting about arthritis and ana markings mentioned  within our CFS/ME chats.

    After four years with confirmed diagnosis of CFS/ME I have recently had  specialist rheumy blood tests showing a higher ana than previous, but then told not sinigicant enough to take further. Also confirmed arthritis in c spine, straight c spine (abnormal), collapsing discs and considerable bone spurs, yet still all being put down to CFS/ME. These things are over and above my cfs/me symptoms but I do feel my weakness and rubbish mobility is somewhat relevant to recent findings.

    Vit D supplements...I was told many supplements do not replace vit D obtained from natural source like the sun. Also that the body stores an amount of essential elements like b12 & vit d and be difficult to restore when completely used up.Truly do not know if this is correct.

    One things for sure, time a defined test cfs/me diagnosis was found and a better understanding amongst the medical proffessionals.

    x

     

    • pam_87693
      pam_87693

      Posted

      I not if your from the UK you need to find out the titre of your ANA. If it's low say 20 it can be nothing to worry about at all. However a high titre say 320 is an indication of an autoimmune disease so your Rheumatologist is the best person to advise you. In the UK this is assuming you are if you have a high titre there is no point in doing this again. Your fibromyalgia must be addressed with your Rheumy .
  • Ravenwood
    Ravenwood

    Posted

    Thanks, everyone.  I still am slightly active.  I cut back a lot on the excercise to try and feel better, but I'm not sure how much it helped.  In fact, I worry that it was a mistake.  I felt so miserable before, and I do feel better now.  However, now I can't every go grocery shopping without sweating, getting dizzy and sickly.  I usually need a nap, where before I didn't. 

    Working from home brought a lot of issues to the forefront.  I don't have the energy I once had (not even close), but now I am more relaxed, more in tune with my body, my blood pressure is down, I don't get as many headaches, I have less anxiety, and I am not in a rage all the time.  So, truthfully I am better.  However, in order to get to this level of feeling better, I lost my ability to maintain much of an activity level.  Heck, I'm even thinking of getting an electric wheelchair so that I can go out an do things with my husband without feeling like I'm going to die.  My mom, bless her heart, is nagging me to exercise more.  But how without feeling terrible?  I lift light weights and stretch, but anymore and I feel like I have the flu.  Ack!  This disease is too difficult and annoying to deal with.  What do you guys think I should do?  Or not do?

    • bronwyn97278
      bronwyn97278 Ravenwood

      Posted

      Hi Ravenwood;  I think when you said "after the exercise i feel as if I've got the flu", is exactly how we all feel.....there are days that I Really want to do the basics, like going to the shops to do the groceries....even the act of going to Church, leaves me that feeling of Having the Flu...aching All over from the head down....loss of balance etc....it is sooo frustrating, and I think I'm at the stage of Fear...knowing that if I go, this is how I am going to feel afterwards....am I game to go?  so, then  I wait until tomorrow, and then there is always another reason.....if someone could give me  a realistic answer to this question (one that will keep me going without the knowledge that there is going to be a rebound)......as it's called Pacing,   but the fact of an half hour drive to get to the shops/chemist/doctors....that in itself is enough....as I have said (and asked the question too)....is it just me....how can others even think of working....is it just me....and over and over it goes....I will answer the suggestion of volunteering in the schools etc re the Nursing knowledge, I did do a Lot of even "inservice:....CPR training etc for the children/teachers, but that's not allowed anymore, due to Insurances and WHS etc.....there is a No to most things these days....will try and work on the typing skills (so don't think I have disappeared, may just be practicing).....cheesygrin...Bron
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