International ME/CFS and FM Awareness Day Is On May 12, 2018
Thomas Hennessy, Jr., selected May 12th to be our international awareness day back in 1992. He knew that May 12th had also been the birthday of Florence Nightingale. She was the English army nurse who helped to found the Red Cross as well as the first school of nursing in the world.
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What does it feel like to substantially improve the quality of your life?

Discussion in 'General ME/CFS Discussion' started by Jesse2233, May 10, 2017.

  1. Jesse2233

    Jesse2233 Senior Member

    Southern California
    I'm curious to hear stories from people who have substantially improved the quality of their life since getting sick either through treatment or naturally getting better.

    What did it feel like? Where were you before? And did you think you'd ever be there?
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  2. ahmo

    ahmo Senior Member

    Northcoast NSW, Australia
    @Jesse2233 I substantially improved my quality of life over the last 5 years. My quality of life is vastly improved, although the foundational ME still governs my life, I have limited energy for life. But I've eliminated most all the symptoms that made my life from unpleasant to unbearable. GAPS diet was my starting point. Within 5 days my overwrought nervous system calmed by at least 50%. Then the next years of B12 and methylation corrections, and detox seems to have removed all the drag on my system.

    I still cannot tolerate much activity, physical, mental, or emotional. I live a very simple, solitary life, but shop and care for myself. My supps are now down to an easily managable amount, no longer supporting iherb with my needs. My feeling is that this is as good as it gets for me, unless there's some breakthrough for mitochondria.
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  3. David Jackson

    David Jackson Senior Member

    @Jesse2233, I've been reflecting and thinking along these lines quite a bit over the last few days...

    I've spent the last week at my parents place, as they were away on holiday. They have an old donkey, who needs help standing up after she's been laying down for some time. My job was to look after her for a week. Two-and-a-half years ago, though, I was struggling to stand, struggling to speak, struggling to think straight and couldn't remain sitting up for very long at all. It genuinely felt like my body was going to die. So, I just spent the last six days helping a 200+ kilogram donkey stand up and take it's own weight. And it wasn't even difficult for me to do this.

    Now, I'm a long way from fully recovered, but it sure makes you stop and think when you see what you can do now, versus what little you could once do.
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  4. hedgehog


    I started out bedridden and needing help walking just a few feet. I had to quit school and work for 3 years. But very, very gradually and in tiny, tiny increments, I improved. It was so slow that I relied on people who hadn't seen me in a year to tell me if I seemed better. It made me feel hopeful!

    I believed I could make a full recovery for the first few years. I wrote a list of what I would do differently than before, when I was healthy again. I had several years during which I was able to finish school and have a part time job. I got up to 70-80% of normal during the best times. I crossed some things off that list I'd made. I enjoyed the freedom of being able to do things for myself. The perimeters of my world expanded.

    Amid the relief of being able to partially return to my old life, I was jealous of people who could pursue a normal life. I felt I had to work twice as hard for half the result. I thought I probably looked lazy on the outside. While I was grateful for the improvement, I was also fearful. I didn't know if I'd ever get to functioning at 100%. I didn't know if I'd get worse again.

    I'm currently back where I started when I first got ill- bedridden. When I felt myself going downhill, I began to panic. I released the hope of having a job or family, as if I could bargain those things in exchange for something smaller, if I could just have something.

    I became desperate to leave at least one thing behind. It was a project I'd started during my period of improvement. As I became more ill, I worked on the project for half an hour a day, which took everything I had. When I could no longer do that, I worried about who could finish my project in the event that I became trapped in my body.

    I think I could appreciate improvement more this time around. I've learned that improvement is not a given and might not last. I'd have to remember to pace myself in the rush to make use of my time and health before another crash. If I could improve once more, I know what I want to use it for. But I also know from this experience that I'm human, and what I hope to do can't always match reality.
    Last edited: May 11, 2017
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  5. lnester7

    lnester7 Seven

    The benefit is not feeling like you cannot make it another minute w the suffering. Just not being in pain constantly (as much) and sleeping better... I guess is you will not consider yourself as sick sick.
    The problem is you still have CFS. So you do not get benefits of disability or plp's understanding or everybody expects you to be able to do more stuff but your body can't. You still cannot plan long term, Live is more complicated, I would say as challenging as when I was in bed (I had disability then and more family help).
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  6. Tunguska

    Tunguska Senior Member

    Agree 100% with Inester7. Physically I'm a wreck, but I made big progress on brain symptoms so sedentary life is not bad. Problem is I'm stuck with one brain symptom I can't shake (it might not even be CFS/ME; has nothing to do with anything I write here) and I still suffer every day. If I could help that one thing, I would not be suffering anymore and that's all I could ask out of life. My life would still be fucked from what it was, but not suffering is underrated.
  7. Murph

    Murph :)

    I agree with this. Unless you keep data it can be hard to notice both slow improvements and slow deteriorations, as you adapt to keep the subjective sense of sickness roughly equal..
    TiredSam and hedgehog like this.
  8. Basilico

    Basilico Florida

    Neither my husband nor I are 'cured'. But when I think back to where we each were at our worst, I can't believe how different it is now.

    My husband has had different lows...a few years ago his GI system was so trashed that his IBS-D prevented him from leaving the house for months...he literally had to be within a few seconds of a toilet at any given time. He was pretty much reacting violently to everything he was eating, even chicken broth. It was such a desperate time...I was reading, reading, reading everything I could to understand what we needed to do to help him. It felt hopeless. When he started vaping pot, his IBS-D got much better - he still had to avoid eating and drinking certain things that would trigger him, but he could leave the house. And later on, after doing a serious probiotic protocol he can pretty much eat/drink whatever he wants with no reaction. I'm still amazed everyday at what a drastic improvement he made with that. I can't believe he's the same person.

    When we lived up north, his autoimmune arthritis in his knees would be so bad that he'd be unable to walk for 6+ months out of the year. That was excruciating...eventually, I decided to make a list of all the times he'd had these flare ups to find a pattern...and a huge pattern was starting us in the face that we'd never realized. His attacks were always in the winter. So, we figured it must have to do with the weather, and we uprooted ourselves and moved across the country to Florida. And miraculously his arthritis stopped flaring up for 3 years and he could actually walk the whole year round! Unfortunately, as the knee got better, the CFS got worse :bang-head: I think his immune system just really has it in for him.:grumpy:

    And a few years ago, during another low he started getting these sudden intense adrenaline attacks out of the blue...he'd wake up in the middle of night to use the bathroom and it would kick in...sometimes he'd be sleeping and a panic attack would wake him up. He had to take Xanax 24/7 or else he'd start getting a really strong panic attack and felt like he was dying. I couldn't leave him alone at all, we even went to the emergency room when during one of these attacks he felt like he was asphyxiating. This went on for months. We were desperate, we felt like we'd tried everything, he kept getting worse, he even had tests runs to see if he had some kind of cancer that was causing this, but every test came back normal. For a while we thought he had a parathyroid problem, but that was ruled out, too. There seemed to be no solution...and then he started taking Mutaflor probiotic and his panic attacks just slowly stopped. It's inconclusive, but he feels the Mutaflor had a big hand in improving the panic attacks.

    We later realized that part of his problem was likely his dysfunctional vagal nerve getting activated any time there was a drop in BP (when he'd get out of bed) or blood glucose. We also learned that he has a SNP that makes his MAO system really inefficient at breaking down adrenaline, so once it gets released it circulates in his system for way too long. He got really strict with keeping his blood glucose in check and avoiding sudden drops in BP and over time, those panic attacks mostly stopped. He's still prone to having too much circulating adrenaline, but we know how to deal with it and mostly avoid it...

    I think back on those times and I remember how desperate it felt to be incapacitated and just not know what the next step was...and even though now he still has to be careful and use pacing to avoid PEM, many days he can still do something that he enjoys....lately it's shooting at the gun range. Yesterday and today he's been brewing beer. Last month we took a short but ambitious road trip for his birthday. When he was at those low points, it was hard to believe it could get better. I try to remember that on the bad days. Just as mysteriously as these problems appear, they can disappear.

    For me, there were days my fatigue was so profound, that I couldn't bear to walk from the couch to the kitchen to get something to eat. I would have chosen to slowly starve to death had my husband not been there to bring me food. Now, I can usually go grocery shopping and run errands, and I am usually the one cooking most meals, and I've taken on the role of researching the next health experiments to try since that was previously my husband's job and he got a bit burned out. And I'm working part time from home, which makes me feel really good about myself. I still have to keep checking in with myself about my energy level and whether I need to rest or not, I still need to do about half the things I wish I could get done, but even with my limitations, I feel like a functional person who can enjoy life. Some days it's easy to focus on the fact that I can't do what I used to...but when I think back to how bad I was, I realize that I am doing so much better than I thought possible, and I am able to appreciate so many things that before I would have taken for granted.

    We usually take 25-35 minute walks after dinner. Sometimes we need to skip them, but most nights we manage it. There were periods of time when these walks were completely out of the question. Even now, we have to be careful not to push our limits.
    Last edited: May 12, 2017
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  9. Chriswolf

    Chriswolf Senior Member

    Still in the process, my doc basically said he doesn't think I'll resume working 12 hours a day outdoors anymore though.

    I used to spend days to weeks incapacitated in bed, now I'm at a decent baseline of "I can go out and do things if I need to but I couldn't run a marathon or keep up a high pace for days"

    Still though, even going from feeling so awful that I couldn't even sit upright at a computer or to watch television, to being able to function at some basic level is pretty amazing to me. I've even started exercising again, although I have to watch myself and make sure I don't overdo it.

    I worked in oil and gas, as a welder/fabricator, I worked a lot, like every day for an entire month except maybe a couple days off at the end of it. I worked very long hours and before I had even finished school in my third year I was making just under 100k per year due to the sheer amount of work I had done. It didn't matter if it was +40 or -40c I was out in it doing what had to be done.

    I enjoyed my life then, admittedly I had way more money than I really knew what to do with, but I had planned on buying a house eventually. I'm not sure if I'll ever get back to that, I'm on a lot of stuff now and while it has helped, something else is missing, like I knew the very day that something had broken and stopped working. I've never 100% gotten back to that, but I've had a few days since being treated that have come close.
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  10. justy

    justy Donate Advocate Demonstrate

    I had a long remission to about 90% functioning - so near normal - for around 10 years, completely spontaneously. Before it happened I had been sick for only a few years, not quite bedbound, but sleeping incredibly long nights and during the day, I had severe anxiety, severe fatigue and severe muscle pain and loss of strength (interestingly this time round not so much). I couldn't open a can with a tin opener or walk more a few metres outside. I was in terrible pain in my back and my joints and my shoulder. I had extreme vivid dreams and cognitive issues. Alcohol intolerance, light and sound sensitivity, dizziness, the works.

    When I got better it all went away, and I felt more or less like I had before. it wasn't overnight - it was a gradual process that took a few years. I slept A LOT in this time, had acupuncture every week, chiropractic, daily hot baths and twice weekly massage. I don't necessarily attribute my recovery to these things, but they may have helped.

    When I was better I still always felt a bit 'off'. I had kids, but I couldn't for example work a job and look after the kids. I found prolonged stress impacted me very negatively, despite being a strong person emotionally and mentally.

    I was a busy mum, but often had stamina issues, that others didn't have. I could exercise, but I never seemed to get any fitter. I swam and cycled, and ALWAYS felt like I was going to die when I stopped the exercise, then would go home and sleep and then would be ok. After a yoga class my forends would be energised and I would be exhausted - but it always wore off quickly and I didn't know anything about M.E then so I didn't stop.

    Eventually I started working part time - 2 days a week gardening - very physically demanding work - at first I was very unfit, but gradually built up until I was very strong. However when I worked hard, when I stopped the job my vision would go blurred and stay that way until I had rested. My heart also used to pound a lot despite being fit.

    9 years ago I was feeling the best I had ever felt. But I had 4 kids, was working part time, doing voluntary work and then started university. The kids all got measles and I caught it from them, then had pneumonia, then a minor op for cervical changes, then never got better or went back to work again. The M.E hit harder and is worse - ive been about 20 -40% functioning over the past 9 years, use a wheelchair and show no signs of recovering again. Ive also developed MCAS.
  11. Chriswolf

    Chriswolf Senior Member

    It's hard to say what can cause it in each case, but it's strange that blurred vision seems to be a common problem among people with CFS. I also had issues with blurring vision, usually it accompanies a cascade of other negative symptoms when it happens for me, a sign of worsening condition to be sure. I've been better since I've started treatment, it definitely happens less, but I find generally speaking the warmer weather seems to make it worse.
    justy likes this.
  12. justy

    justy Donate Advocate Demonstrate

    If warmer weather makes you worse than you might want to rule out co morbid POTS.
    For me the sunshine and warm weather always causes an improvement.
  13. Chriswolf

    Chriswolf Senior Member

    The problem with that is that higher temperatures tend to reduce blood pressure, I started treatment during the dead of winter and I was pretty good, as soon as the temps crept up into the positive double digits celsius I knew my old nemesis wasn't going to give up without a fight. My blood pressure is one of the last few holdout symptoms I've had to contend with so far.

    "Blood pressure generally is higher in the winter and lower in the summer. That's because low temperatures cause your blood vessels to narrow — which increases blood pressure because more pressure is needed to force blood through your narrowed veins and arteries."

    Secondly my doctor does supine and standing blood pressure testing every visit and my standing blood pressure is always lower, which has been validated by my low aldosterone levels.

    In my case it may well be either poor insulin response, which the changes in weather are purely coincidental, as I have had insulin problems before due to my prolonged hypothyroid state. Or it could be that my blood pressure just gets too low and that induces blurring vision. In your case it may be something else.
  14. gregh286

    gregh286 Senior Member

    Londonderry, Northern Ireland.
    I'm pretty much fully recovered.
    Couch bound at worst.
    It's feels like being released from prison. Another chance at life type of thing.
    Had ME for 5 years.
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  15. Ambrosia_angel

    Ambrosia_angel Senior Member

    Good in some ways and bad in others. Your life will never be the same.

    I feel happy about being able to go out and walk in the sun. The first time I walked a mile in the sun was euphoric. But sad that I don't have any close "let's go out for a coffee" friends after since I was first diagnosed. Life doesn't necessarily feel good when you go out alone and see other people with friends but I guess overtime I've learnt to deal with it. Sometimes I prefer to stay in just because of that.

    Sadly I was born in a generation that does not value human face-to-face interaction which is horrible but I can't do anything about it..
    million1 likes this.

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