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Attitude help

Discussion in 'General ME/CFS Discussion' started by Catjbro, May 13, 2016.

  1. Catjbro

    Catjbro

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    I'm trying to figure out how people do this. Im in bed and feel lonely, helpless, hopeless and envious of the outside world. I'm mostly bedbound and have no idea if I'll ever get out. I can only talk on phone for like 30 seconds cause it's pushing. I'm depressed and anxious. I want it to be winter so I don't feel bad being inside in bed. How did you learn to cope and what attitude changes did you make. Thanks

    And how do you stay in bed and do nothing if you can't sleep. I can't read much at all, have tinnitus so can't listen, can't do hobbies, can't sleep. How do you not go crazy?
     
    Last edited: May 13, 2016
  2. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    I'm not as sick as you, so don't have an answer.

    But I can share what helped me when I was at my worst - I improved from severe (house bound) to moderate from laser therapy by Dr Kahn in Toronto - he's trained other doctors who practice in other cities, they will obviously have less experience than Kahn, but be properly trained under his protocol:
    http://bioflexlaser.com/clinics/clinic-locations.php#Canada

    I improved so much after 3 days I rented a home unit that I use nearly daily. Based on my experience, you would know in 3 - 5 days if its going to help ease some of the symptoms. I've heard that Kahn believes it also calms the vagus nerve.
     
  3. Catjbro

    Catjbro

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    I have a bit of pain pain but it's the exhaustion that is overwhelming and cognitive so I'm not sure laser would help that. But thanks for the info.
     
  4. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    Yeah, I don't have pain either - its actually used on the brain stem to increase ATP and decrease inflammation.
     
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  5. Old Bones

    Old Bones Senior Member

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    I'm not sure I "learned" to cope. Instead, it seems I made a natural, but gradual, transition to accepting my altered circumstances. And, I definitely can't take credit for consciously making attitude changes. In some respects, I think those of us who became ill decades ago had it easier. The internet didn't exist, and there was little, if any, published information on what was then referred to as chronic fatigue syndrome. I certainly had no inkling that I would still be ill almost thirty years later. This made it easier to stay optimistic, and take one day at a time.

    But, you may have advantages my cohort didn't. I'm assuming you are much younger than me, and more recently diagnosed. This means you can benefit from the advice that rest in the early stages of the illness can result in a better outcome down the road. It seems rest is being forced on you due to severity, and that is certainly challenging. Please don't think I'm minimizing your genuine suffering. But, by re-framing your current mostly-bedbound state as an investment in your future better health, it may help.

    In my case, I slept much of the time in the early years. And when awake, I was in a stupor most of the time. So, during my better phases, I actually felt emotionally worse -- too ill to do anything, but aware of my circumstances. I know what you mean by feeling envious. These days, I have little contact with people who are healthy. When I do, I sometimes feel resentful that they have (had) a life, and I don't (didn't). This usually doesn't last more than a day or two, so I don't beat myself up about it. Nor should you. Loneliness, helplessness and hopelessness are understandable under the circumstances.

    If not for your tinnitus, I'd suggest listening to book tapes. Many public libraries have a selection and delivery service for those who are housebound. Or, these days many recorded books can be checked out on-line and downloaded on a cell phone or tablet. Book tapes have added advantage of putting me to sleep. Perhaps this is something you can consider once your situation improves a bit.

    And improve it will. In terms of emotional support, you've come to the right place. Phoenix Rising is a wonderful community. And, based on the research currently being done, I'm expecting great strides to be made in the next few years regarding treatment.

    In closing, be gentle with yourself, and know you are not alone. Sending very warm wishes from your neighbouring province.
     
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  6. Catjbro

    Catjbro

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    Wow - really. I'm going to have to look at that. Thanks
     
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  7. Justin30

    Justin30 Senior Member

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    Did you have a lot of pain with your ME?
     
  8. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    The only pain I experience is more of a pressure on the back of my head when symptoms intensify.
     
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  9. Hutan

    Hutan Senior Member

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    I'm so sorry about your situation @Catjbro. I'm not as sick as you and I still get frustrated and down sometimes about my limitations. I think the emotions you feel are a perfectly rational response. Good on you for making the effort to find some ideas to make things better.

    I'm not sure what you can manage, who you have to help you and what your home is like. Maybe you could draw or even just colour in? Some here have found knitting relaxing and giving a feeling of being productive. I like darning and mending things - but yes, that is a little odd.

    My son and I feel so much better when we can spend time outside. I think sunlight really makes a difference to how we feel although I know that light can be irritating. The rays that help your body make Vitamin D don't go through glass so, if you can, resting outside, even with dark glasses on, might be worth trying.

    Is it feasible to have a pet? (ie can someone look after it for you?).

    Best wishes in your search and of course, hoping that your illness improves over time. How long have you been sick?
     
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  10. Catjbro

    Catjbro

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    Hi Oldbones
    I'm 55. I've actually had this since about age 25! But was diagnosed as depressed put on AD's, even had ECT and told to push myself, exercise etc which invariably set me up in s push crash cycle for 30 years. I've run on adrenaline for many years. Then about 15 years ago I was diagnosed with adrenal fatigue but have never been able to fix them probably due to fact I have these other issues. I always assumed once I got my adrenals mended I would be ok. I was clueless. Last year I moved 4 times had incredible stress and crashed and I think that was the final straw. So this isn't new for me and I'm really unsure my body or mind can recover now I've done so much damage over the years. I can't say I have much hope right now.
    Cathy
     
    Last edited: May 13, 2016
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  11. Old Bones

    Old Bones Senior Member

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    @Catjbro Oh dear -- that's a long struggle. But, it seems you have retained a sense of humour, based on your avatar. Absolutely love it!
     
  12. Justin30

    Justin30 Senior Member

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    @Catjbro

    I feel your pain I have been sick for less time way less and have been really sick the last couple of months.

    Bed/house bound....what keeps me going is that with whatever strength I have left I want to at least say I have said I sent the email to health ministers or signed that petition, I advocated as best I can and I will not be forgotten. I will stand up for others to sick to talk or write.

    Its what keeps me going...I hate this disease so much....it has messed me up good....as has it done to many others....

    I watch netflix if I can and read when I am able....

    I hope for better days to come your way...
     
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