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CFS/ME Self-Management Seminar

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Qwase
Qwase

Hiya

Im not on here very often so apologies if this has already been done to death!!

I was just wondering if anyone has been to one of these before?

Mine is NHS, I dont know if that makes any difference but it's probably not going to be schmoozy and Americanised or Evangelical. I was googling the other day when i found a charity that had Prayer listed in it's recommended treatments, it was a couple pages later trhat i noticed it was a Christian charity. Nothing wrong with it but i prefer my stuff to be a bit more pro-active!

1 like, 21 replies

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  • ChloeCybil
    ChloeCybil Qwase

    Posted

    I have not been to one of these seminars. I will say that most treatments recommended are just trial and error. If there was a real treatment or cure we wouldn't all be suffering from this disease. Most people are so desperate for any kind of relief that they throw away money after money trying anything and everything and most of it is scams. I will say don't underestimate the power of prayer. I am not a bible thumper but prayer to some is the same as meditation or yoga to someone else. If it relaxes you, then it is therapeutic. From personal experience, I try to keep my immune system healthy with a multi vitamin, Vitamin D3 and a probiotic. This at least helps keep my digestive system under control and supplements whatever I am lacking on the days when I have no appetite. I have also gone to a chiropractor and it helps with keeping my muscles relaxed and allieviating some of the pressure in my head. As of today, I am on the track to feeling better and can feel my energy coming back. I am far from recovered but I know it is in the not so distant future. Again what works for me may not work for anyone else. I do try to walk every day weather permitting. I can't walk when it is humid or hot as I have asthma to cope with too. It helps to stay positive as in your glass is half full and not half empty. I think they teach that in the CBT therapy which I feel I don't need as I am a very logical person and can figure out that stuff myself. Good luck in your pursuit of health as we all are!!!
    • Qwase
      Qwase ChloeCybil

      Posted

      trial and error, very good point! A lot of what Ive read here |I couldnt even contemplate just due to finances. I think im going to have to work very hard over the next few months figuring out what works.

      Ive got youngsters, so i have to be respectable looking and out by 8.15 everyday, then have to drag my arse to toddler groups, because no matter how much if kills me keeping her home would be a much greater chore;-)

      Then most pm school runs and most dinners. Have to admit Im trying to find easy ways out cooking. The other day i opened a tin of toms, a tin of mixed beans, some sweetcorn and some vegetable ravioli. Added some herbs and called that dinner!

      I think figuring out how to pace is gonna be hard.

      Its good to hear that ur starting to pick up! fingers crossed it continues

      xxx

    • jeanp
      jeanp Qwase

      Posted

      Oh Qwase, whatever makes it easier for you and means you get by without totally collapsing! yr dinner sounds fine!

      I haven't been to an NHS seminar so can't tell you anything about them (though I am going to ask my GP to refer me to CFS/ME services, so it might be my turn soon). However, I did go to a local self-help group, and last time I was the only one who turned up, apart from the nice man who was facilitating, who doesn't have ME himself. So not all that helpful.

      Working out what you need to do to pace yourself is pretty easy, I think, it's actually doing it that's so darn hard! Must be even more so with a family to look after.

      Jean

    • Qwase
      Qwase jeanp

      Posted

      That must/ve been frustrating. Ive had a diver do divers massages on my legs which worked wonders short term. just a matter of getting them done regularly.  Opddly, a few days later i got my bloke to massage my legs, and he finished one leg, and it was much better, he went to move onto the other, intending to just repeat and the first couple strokes were excruciating, had to get him to stop cos it was agony. It seemed utterly bizarre that, considering the two legs had both done the same activities during the day, the legs would react so differently.

      Good luck with ur GP

      xxx

    • ChloeCybil
      ChloeCybil Qwase

      Posted

      I couldn't even contemplate taking care of a toddler with CFS. What a tough struggle you have. I find it interesting that some people with this disease can continue to work or at least function in some capacity while others are housebound or even bedbound. I set goals for myself every day and I feel good when I can achieve them. I know coping with this disease is very physical but in some part for me anyway I think it is mental too. I have to take the attitude that I will get better and I will struggle every day to do something active so that I do not become bedbound or even housebound. And I can see how that can happen, as when I was at my lowest point, I had a hard time getting out of bed, or even getting dressed. There were days when I didn't get my make-up on or fix my hair, and those were my low days. Now I can keep my house spotless, keep up with the laundry, and cook meals every night. That is how I know my energy level is coming back. I am still tired, I still have pressure in my head, but I feel better than I did so that gives me hope. You need to not put so much pressure on yourself. The more rest you get and the more stress you can let go of, are going to be what helps you turn this around. I agree with you that fixing meals are the hardest because there were times when opening and heating a can of soup sounded like too much work. Be good to yourself and YOU will turn this around!!!
    • Qwase
      Qwase ChloeCybil

      Posted

      The spotless house makes me feel a bit guilty. Housework is the thing i let slide!! because i HAVE to get to school, and i HAVE to get to playgroups and i HAVE to get to work when i have a free moment i think bugger to hoovering!

      My health visitor said that just because my DD wants a three hour nap some days that im wrong to let her cos it messes up her routine, bedtime etc, but i just sat there and told her that that gives me time to rest, i can squeeze in a quick nap and then sit and watch tv or listen to music. It sounds crazy, and sometimes bedtime is a struggle but to be honest it does feel like it's worth the short term gain.

      Iknow what you mean by the spectrum, i feel bad when i know that I'm by no means a severe case, but when it turns your life upside, until you're no longer who you once were, or what you want to be its just so frustrating.

      Im putting DD in nursery a couple sessions a week, me, who lives by the motto "i chose to have kids, they didnt chose to havev me"  I would've loved to have waited another year or so before preschool but im no longer a good enough mum every day of the week :-( i CAN be, if i get enough rest but thats no easy feat!

      i definitely need to work on the rest more, stress less bit! xxx

    • ChloeCybil
      ChloeCybil Qwase

      Posted

      Oh Qwase, I did not mean to make you feel guilty about housework. I didn't mention that when I was really not feeling good and too tired to do anything, my grown up daughters came and cleaned my house for me, did my laundry, got my groceries, and prepared some meals. If there is anyone that you can ask for help, do so. Don't feel guilty about asking for help. You need to save your energy for quality time with your child. I know that getting enough sleep for me at night is still out of my reach. I get enough sleep to function most days, but can't remember the last time I got more than 3 hours of sleep on a row. Each day I think, if I could only get some sleep I would be better so much sooner. I still am working on handling my stress better and that is a challenge. I grieve for the person that used to be me but hope to get part of her back. I still want to travel and go to lunch with my friends. Those are my goals. I want to be the mate for my husband that I used to be. I think we all deal with guilt in one way or another and I realize that guilt is non productive so I try to work on that. You will get better.....you are not housebound and can still get out. Hang onto that fact. The rest will follow......Hugs!
    • Qwase
      Qwase ChloeCybil

      Posted

      The sleep breaks are awful :-( DD is only sleeping through the night the past two weeks!  The past few nights have been amazing. It's hard work. Trying to figure out how to balance everything. Definitely see why positivity is key!!!!
  • jackie00198
    jackie00198 Qwase

    Posted

    Qwase:

    Had to laugh when I read your post, and couldn't resist responding. I'm from the U.S. and am wondering what an Americanised seminar would look like, in your mind. Anyhow, I vote for attending the seminar, if you have the energy. You might learn something valuable about managing your condition.

    • Qwase
      Qwase jackie00198

      Posted

      sorry, v  wrong of me to stereotype. you know, self-helpy type thing, prosperity comes to those who open a chequebook, that sort of thing.

      Im not a bigot, i promise!

    • jackie00198
      jackie00198 Qwase

      Posted

      Qwase: I take absolutely no offense at your post. Like I said, I laughed when I read it. I was just curious, is all. And, after all, this forum is a place where we can let it "all hang out" without fear of being judged. I've learned that there are certain cultural difference between the English and Americans. It's just sometimes hard to say what they are. 
    • Qwase
      Qwase jackie00198

      Posted

      It was v different to what I imagined! Maybe a dozen of us in a small classroom. Interesting though, lots of reading material!!! Haven't even contemplated it yet. Daunting!!!
  • david59662
    david59662 Qwase

    Posted

    I've tried prayer...NOTHING !!!
    • ChloeCybil
      ChloeCybil david59662

      Posted

      Have you found anything that seems to help you at all? Just curious, as what works for one does not work for all. Moderate walking for me seems to help. I know it helps my mental outlook. 
    • pat62
      pat62 david59662

      Posted

      Hi David, 

      I can only live with this because I have prayer.  Prayer has multiple facets.  As ChloeCybil  said some use it as quiet time or meditation. 

      Prayer does not mean that I instantly feel good, but it helps me to accept where I am and think clearer about what I can and cannot do about it.  

      Without times of prayer and reflection, I think my sanity would have cracked,  I am so used to be able to do almost anything, that to be taken to a point of not being able to do anything was unbearable at first. I wouldn't admit there could be any reason for it, and kept trying to do, which of course just made it worse. 

      Being not able to do has actually provided blessings with things that I might have missed if I had been still living my busy life.

      I have found that God answers prayers not always in what we ask for, but in what we need at that moment.   My greatest needs at first was to be able to say "no" to people, and to not feel guilty about resting when I needed it.

    • Qwase
      Qwase pat62

      Posted

      Sorry. I have a fat thumb and a stupid smartphone !! Anyway

      Your last paragraph is v true, for me at least, and probably many others here. 

      Xxx

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