New Atmosphere, New Vision: Gibson and Whittemore Kick Off Invest in ME Conference 2016
Mark Berry reports on Dr. Gibson's introduction and Dr. Whittemore's keynote speech, at the 11th Invest in ME International ME Conference in London.
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Discussion in 'General ME/CFS Discussion' started by Matty, Aug 10, 2015.

  1. Matty

    Matty

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    'Hello everyone,

    I'm new here and wanted to reach out and say hello. Unfortunately I've had CFS now for more than 3 years, and am also suffering from chronic depression. The depression has improved in some ways. But everything is always a struggle now. I used to love playing video games a lot but because of CFS sometimes I just don't have the energy to play them (does anyone else get that a lot too?). Even watching TV Shows can be a struggle for me as well depending on how tired I am feeling at the time. And then I have days where I feel good, but I still don't feel like doing anything (depression). It is a vicious circle!

    Sadly I've been off work now since the end of 2012 due to these conditions. It has been a very frustrating time and I'm amazed at the fact that I've already lost a friendship over it because this person completely downplayed my illness. They should never have included "Fatigue" in the title of this disease. Normal people truly have absolutely no idea what it is that we go through. And I suspect a few of my friends have their doubts about me as well and will probably think that I'm "over-reacting". One of my friends even asked me not long ago how is the job front going? because yeah, I am totally well enough to work right? /sarcasm. I swear you tell a lot of people what it is we suffer with and it goes in one ear and out the other, even with our closest friends and family. I also had another friend who I've parted ways with now (over a separate matter) who also came over one afternoon and made a comment about how he thought I'd be looking for a job already.

    Sadly I've learnt to keep CFS to myself these days. Sometimes I still slip and let a few people know what exactly it is that I suffer with. But mostly I keep it completely under lock and key because I don't need to be judged by other people. What the f**k do they know right? why should I have to defend myself and put up with bullshit from people when I already feel miserable most days. Oh yeah and all the advice that comes along with telling people about your problems. Have you tried this? have you tried that? well don't you think I've already tried everything because I have a computer and internet at home and did research because I want to feel better? christ this really angers me.. anyway it is pretty sad though that I feel I have to hide my illness now. It is easier to just tell people that you feel okay or not too bad and not bother letting them know what is really going on.

    My Dietician said there is a 50/50 chance the GAPS diet may fix my condition as my stomach bacteria test was one of the worst he's seen. I plan on seeing a Naturopath as well who successfully treated a friend's chronic depression. I figure I may as well give it a shot now that I'm off anti-depressants as they were giving me bad reflux (I'm still having it). Plus the fact that I felt they weren't working all that great anyway.

    I've already tried the diet several times and failed. Longest I've lasted so far is 6 weeks. I'm going to have another crack at it in a few weeks time and try my best to reach 3 - 6 months. Unfortunately food is my kryptonite and a big part of my comfort zone. Something that I thankfully still get pleasure from.

    So yeh that is my story. Just thought I'd share it with you all. And figured it was time to join a CFS forum since nobody else can relate to us (how can they?).

    I hope you are all doing okay considering the affliction we have to live with!

    PS. How is everyone here with their sleep patterns? mine is screwed. And I've read online that it's a common thing for CFS sufferers. Is this true? I can't fix mine because every time I try to reset it, when I have really bad days I end up falling asleep and can't get to sleep until later. So I just gave up and just let my body/mind do it's thing. Now I'm up until 5am - 6am in the morning. I would like to go to bed much earlier but I just feel it's a waste of time. How does one keep a regular sleeping schedule with this affliction? it's not like you can wake up a lot earlier either because you already suffer from tiredness and I find lack of sleep just makes it a lot worse and can turn what might have been a really good day energy/mood wise into another miserable one!

    Kind regards,

    Matty.
     
    Last edited by a moderator: Aug 10, 2015
    Snow Leopard, alex3619, MeSci and 8 others like this.
  2. belize44

    belize44 Senior Member

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    I know your pain, Matty; lots of us here do. I lost all my former "Friends" as this illness progressed, to the point where I only have two people I can talk to and be understood; my husband and one friend who used to counsel me. And yes, I struggle with normal sleep patterns and have tried lots of things just for the luxury of sleeping straight through the night with possibly one bathroom break. I'd be interested in wha the dietician and Naturopath recommend as far as dietary changes. I think gut flor is a big key for lots of us, as well as finding unknown allergens and eliminating them from our diets. Not that these things will cure us, but any burden of excess symptoms that can be relieved is worth is, right?
     
  3. ahmo

    ahmo Senior Member

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    Absolutely right. Everyone here understands this experience.

    GAPS was my starting place. I had to eliminate most foods. I had to get over my attachments to foods. I've put some foods back in, after 3 years, but will never return to grains, some other foods. From GAPS I went on to methylation protocol. Once I had theraputic levels of B12, my insomnia disappeared. Best of luck to you, you've come to a great place for your physiology and your emotional well being.:hug::balloons:
     
    Wayne and AndyPandy like this.
  4. Snookum96

    Snookum96 Senior Member

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    Welcome @Matty ,

    I have sleep troubles as well, I try to go to bed at a regular time but it doesn't help much. I haven't found anything that works. I think it's trial and error. I'm sure you will find some good suggestions here.
     
  5. minkeygirl

    minkeygirl But I Look So Good.

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    Drugs = sleep. Without rx and OTC I'd never sleep. Many of us wouldn't.
     
  6. AndyPandy

    AndyPandy Making the most of it

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  7. Little Bluestem

    Little Bluestem All Good Things Must Come to an End

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    Do you have access to an ME/CFS specialist? You are still early enough in the process that your chance of major improvement/remission is good.

    You will find a lot of discussion of sleep here. It is a common problem.

    Many of us do not do well with SSRI antidepressants. I hope you are able to find something to help the depression. You don't need that on top of ME/CFS!
     
    taniaaust1 likes this.
  8. Firefly_

    Firefly_ Senior Member

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    Heya Matty I too miss my video games terribly! I'm right there with you on the screwed up sleep patterns and frustration with trying to explain this f@#!ed up thing with the trifling name to people so I just cried uncle on it all lol. Welcome...and here's hoping for some relief in the not too distant future for us all!
     
  9. Wayne

    Wayne Senior Member

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    Hi @Matty

    Welcome to the PR forum. I've managed to get my sleep patterns somewhat under control, but it's still not great. One simple thing I've discovered is a "posture" that helps me relax and sleep. Perhaps it would be something you might want to consider. -- The exercise description is in the following video at about the 3-min. mark.

    Relax and Release the Psoas Muscle Easily and Effortlessly

     
  10. taniaaust1

    taniaaust1 Senior Member

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    Welcome Matty :)

    Unfortunately yes most of us have lost friends cause of this illness and cause they don't understand it. I used to have one try to drag me out to places who didn't at all understand that I was often too sick to doing that, I ended up having to cut her off as she was just making me sicker.

    Nods. Nearly everyone with this illness has some sleep issue or another.

    As far as sleep.. Several months or so ago I finally had mine good again (well it had came good itself, for years before that nothing I did fixed it, I'd developed 3-4 different sleep disorders with the ME/CFS at one point).

    A few months back though, I was just going with the sleep cycle my body was doing and hence allowing myself to sleep in till 11am each day (thankfully being on a disability pension allows us to do this) and via doing that, I wasn't then noticing sleep issues (just meant I slept at slightly odd times, better to not fight with our bodies when we have ME/CFS) (though others get annoyed if a persons sleep schedule doesn't fit into their schedules!!).

    Unfortunately Im back into sleep issues again recently due to situation I was in in which I wasn't able to control factors which affect my sleep and back to now not having any regular times for my sleep (even my unusual regular times). I went to being up till 4-5 in the morning again and sometimes still being awake when daylight hit.

    At my worst sleep cycles. I used to not get to sleep till 6-10am and then often not at all at times going days without sleep.. most was 5 days no sleep and I was hallucinating due to no sleep (I ended up having to take 3 different things for sleep back then including a benzo drug). Sleep like anything with this illness though can change. ME/CFS people have lots off different sleep issues.
    ...........

    I suggest if you haven't done so already, to try St John's Wort for your depression. A Naturopath is highly likely to recommend you try it. It is very common for ME people not to be able to take the pharmacutical anti-depressants like SSRIs.

    About the only game I occasionally play though I love games is SIMS 2, with other games I mentally fatigue too fast playing and cant think fast well.. to hard on my brain.
     
  11. redaxe

    redaxe Senior Member

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    Hi. Welcome to the forum.

    I'd add to what others here have already said - if you can find a good CFS/ME physician.
    Are you able to tell us what country and city you live in? We might be able to recommend someone to you. Generally speaking there is a consensus about this disease that the sooner you find a doctor who can find some things that are wrong with you and treat them the better chance of recovery you stand.

    Re. Sleep.

    Mine isn't good - was never the same after the illness started. For a long time I just let my body take over and decide when it wanted to sleep. Now I'm back studying so I'm using stimulants to get through the day. Sleep isn't quite so bad now (If I have issues melatonin is usually enough). Daytime tiredness is my enemy.
     
  12. 2Cor.12:9

    2Cor.12:9 Senior Member

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    Welcome Matty.

    We ALL know! I know you've tried an antidepressant without success but maybe you should consider Trazodone. It's cheap and is an oldy that's not in the same class as the newer SSRI's which can have more side effects.

    It sure did save me when I first got sick because it's used for sleep, depression, and anxiety.

    My hubby doesn't have CFS but uses Trazodone every night for sleep. Plus it is non addicting. We were both able to discontinue without problems.

    Post anytime you need to.
     
  13. Matty

    Matty

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    It is sad isn't it? I thought true friends were supposed to be supportive and understanding of each other? oh well I guess it allows us to separate the wheat from the chaff. Basically the dietician recommended I follow the GAPS diet. Hopefully I'll see the Naturopath next week but it will be via Skype. I think she uses Metagenic products (I could have the wrong name here) to treat depression. One of my friends had it very very bad and he recovered after a special diet and supplement regime using these products.

    Oh yes so very true! we need to make it as easy on ourselves as possible considering every day is already a struggle for us.

    Did you find after being on the GAPS diet for a significant amount of time that the severity in your symptoms reduced? this is something that scares me. I love my food, it is one of my only pleasures in life and my comfort zone. Now I do have to lose a lot of weight, but the thought of denying myself all the food I love for something that might not even work in the first place is a terrifying thought to me as silly as that sounds. I'm already denied a lot of things in life. I don't want to make it harder on myself if the end result won't matter anyway! I guess I won't know until I try it. 6 weeks is my longest so far. I need to reach at least 3 months this time!

    Unfortunately not. Where I live, there isn't many specialists up here. I had to see a back specialist once and he had to fly here from the other side of the country.

    Thank you! I hope so too.
     
  14. Matty

    Matty

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    Man I am loving this multiquote feature!

    I know it sucks hey! depression and cfs has made video gaming SO HARD for me! I'd been waiting for a long time for the Witcher 3 to come out and when it finally does, I struggle to play it. The thought of such huge open worlds now with so much content is daunting to me. And then you play for a few hours and feel like you haven't even made a dent. And then when you are having a bad day and you feel so tired, you can't concentrate anyway hah... oh well that is life. On the plus side, Witcher 3 isn't going anywhere. So if it takes me months to finish it doesn't matter right?

    Wow that sounds terrible! thankfully the longest I've stayed up is for close to 2 days. It's not good for our bodies (even without CFS) to go without sleep for several days. I'm sorry to hear you went through that. Right now I seem to be going to sleep around 6am or so. It keeps getting later and later. Maybe I should just go to bed an hour later each day until I get back to a normal time? I don't know lol..

    Yes I've heard of St John's Wort. I'll take that into consideration! thank you :)

    I could never really get into the Sims, but it certainly is a popular franchise! it's a shame that EA has apparently killed The Sims 4. They continue to strip content from newer games and sell it later as DLC content. I really fucking hate all this DLC nonsense to be honest. It's just one big cash cow. Screw EA.

    Yes I know what you mean. Games require a great deal of concentration and hand-eye co-ordination. When you're having a bad day, it just ain't happening :(
     
  15. gregh286

    gregh286 Senior Member

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    Welcome @Matty
    Its a tough road to walk with cfs.
    Totally misunderstood and level of incapacity underestimated.
    Good luck in your quest for improvement.
     
  16. Matty

    Matty

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    Don't think that is going to happen up here sadly.

    Sure. I live in Darwin, Australia. If you find someone that specializes in CFS in this area I will be probably more surprised than when our current prime minister actually got elected (ok maybe not THAT surprised but probably pretty close lol).

    Thank you I will keep that in mind! though I would prefer to go the natural route. I don't like to be on medications if I can help it. It's good to know it helps with all those things though! sadly I do suffer with anxiety also, but it's only been mild since coming off the anti depressants. Not like the panic attacks I used to have.
     
  17. Matty

    Matty

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    Tell me something if you wouldn't mind.. if you had created something and it used to be something you loved doing and you spent a lot of time doing it (ie arts, music, etc) and it was the first new thing you've created in over 1 year. And you told your good friend about it and told them to let you know if they wanted to check it out and they never even bothered to ask you to send it to them - would you be absolutely downright hurt and pissed off? I know people have different tastes in life. But it's the effort that counts right? make an effort for a friend for 5 minutes and show them that they care regardless of the fact as to whether they would like it or not. Or is this just my depression making me overly sensitive to everything? fuck I'm angry... sorry for the french :(
     
    Misfit Toy likes this.
  18. gregh286

    gregh286 Senior Member

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    I would consider them unfriended.
    We dont have time to waste on chasing people.
    This condition will highlight all your friends true colours.....and family.
    Hard to detach ourselves emotionally but we.have to focus on our own wellbeing.
     
    Snookum96 likes this.
  19. Matty

    Matty

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    Easier said than done I'm afraid (at least in this case). If I didn't consider them to be a good friend I could very easily cut ties. But this person has shown the most understanding and caring out of all my friends. And I've known them a very long time. But you are very right. We should never chase people. That is one of my pet hates.
     
  20. Effi

    Effi Senior Member

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    Hi @Matty , and welcome to PR!
    I'd be hurt and mad too. I feel like people really don't understand how much effort it takes for us to do anything at all, and how much extra effort it takes to properly finish something we create (if we can ever even finish it). To them it seems like no big deal, but to us it feels like the biggest accomplishment ever (which it is, seeing how much effort it took!).

    That being said, healthy/active people are SO busy, they have so many things on their mind that I think sometimes it just totally slips their mind. At least that's what I want to believe is the reason. And usually it turns out it is. If not, I don't need to see them anymore. Cutting out unsupportive friends can be quite cleansing.

    When you're sick long term, relationships can change. If this friend really is a good friend I think you could honestly bring it up and say how it makes you feel. We all need time to adapt to the reality of being chronically ill, and I think our friends do too.
     
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