The Power and Pitfalls of Omics: George Davey Smith’s storming talk at ME/CFS conference
Read about the talk that stole the show at a recent ME/CFS conference in Simon McGrath's two-part blog.
Discuss the article on the Forums.

Those of you who are completely disabled

Discussion in 'General ME/CFS Discussion' started by powertool4, Mar 30, 2016.

  1. powertool4

    powertool4

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    How do you deal with it? I've recovered for few years and relapsed hard and so now i am completely disabled. I can barely go to the bathroom on my own and i live in a twilight world where I'm wide awake, anxious, unable to sleep but too shaky neurological and fatigued to sit up.
    Think about death everyday. Barely able to type this out. I just can't think about leaving my family but it is really hard to do this everyday physically. Some symptom relief will help. Way too messed up to go to the hospital they'll probably do something to make it worse potentially.
     
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  2. taniaaust1

    taniaaust1 Senior Member

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    sorry to hear this, I'm often in this same situation.

    Right now I'm out of bed and awake as Im too anxious to sleep (for me though the anxiety is coming from being pushed to do more then I know Im able too, where Im pushed to the point I crash into severe symptoms and do end up in hospital. Last week I ended up in hospital on oxygen after being pushed into doing more then I was capable of.. blood oxygen was somewhere under 96%)

    With the hospital situation it all depends on what happens with you when you crash. I do find hospital can be quite helpful to me as I will often need a drip which then does help me a bit sp when Im at the point where Im struggling to sit due to OI (though of cause hospital is a huge anxiety trigger as you never know what dr you will get and what they will be like towards this whole illness).

    I really wish I could get back to my psychologist so at least I would have a professional to talk about it all too, I had a good one who had quite a bit of understanding towards ME/CFS and knew this can be a very severe illness but Im too sick to get to her myself and just dont have suitable help to do so.
     
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  3. jimells

    jimells Senior Member

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    I'm not quite there yet - I can still be up about 20 - 30 minutes at a time, a few times per day, so I can still take care of myself, after a fashion. On days where I can barely get to the toilet, I don't know how I get through them. It's just one day, one hour at a time. There's no past and no future on those days, when I'm reduced to trying to stand long enough to make a coffee.

    I've had many days where death seems like a very good option. Mostly what has kept me alive this long is having a bad attitude. My former partner would probably agree that I could teach mules about being stubborn. One idea that keeps me going is that I am determined to see Sir Simon and pals held to account in a court of law.

    Society doesn't give a damn if we live or die, and would prefer the latter, So I say to society, "Up Yours!"

    I can no longer throw wrenches into the gears of the machine that grinds up all of us, but I can still be grit in those gears, as long as I stay alive and collect disability. Given how many sick people there are on disability, that is a lot of grit.
     
  4. NL93

    NL93 Senior Member

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    So sorry. I can totally relate to how you are feeling. Same thing happened to me. Few months ago i was sort of in a remission., I could walk around, do grocery shopping, meet with friends.
    Now i am almost completely bedbound too. I can stand up for 1 minute max at a time, i am eating while lying down, feeling completely out of it. It's a horrible nightmare.
    I think the only thing we can do is keep having hope for the future. Things can slowly improve naturally, and new research is being done to find treatment. This is not a permanent state we are in.
    There are a lot, seriously, a LOT, of people fighting the same battle, you are not alone. You can message me if you like to talk.
    Hang in there.
     
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  5. Gingergrrl

    Gingergrrl Senior Member

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    @powertool4 I am completely disabled due to lung weakness and breathing issues even though I am not disabled in other ways. I do not know if this will be of help to you, and please disregard if it is not, but yesterday I started renting a motorized wheelchair to try at home and it is the best thing I have ever done. I am now able to get to the bathroom or anywhere in my apt on my own without being pushed in a manual wheelchair. It brings me freedom and independence that I have not had since 2014.

    It of course does not solve the underlying medical problem but it makes me more functional and I no longer have to ask my family to wheel me to the bathroom or the kitchen table b/c I can get there on my own. It has raised my self-esteem (which I know is silly and I am still a person of value and worth even if I cannot walk) but nevertheless, it has raised my self-esteem and confidence.

    It was a difficult process to rent (and later buy) the chair but if you or anyone wants the info, I can share what I learned and feel free to send me a PM.
     
    perrier, justy, ahimsa and 7 others like this.
  6. SickOfSickness

    SickOfSickness Senior Member

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    I'm not bedbound but I still wanted to say I have so much sympathy for your situation.

    Boredom really sucks, just like pain and other symptoms do. Can you listen to music, or maybe audiobooks? Read or draw if you take many breaks? Someone on here had a great post about how she's gotten good at fantasizing different endings to fairy tales, and lots of other things.

    I would suggest trying as many treatments as you can at home. Like you said, maybe even if fix a couple symptoms, that might help. If you try 20 treatments, I would hope something helps. They can be simple things like salt loading and drinking more water can help POTS/OI symptoms. Compression stockings have helped some people be able to stand or walk a little longer. You could also try avoiding certain foods and see if any avoidance helps. B12, B2, magnesium, valerian root for sleep, etc. I am not sure if you tried these things.
     
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  7. dannybex

    dannybex Senior Member

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    I'm sorry to hear this @powertool4. I noticed on a thread you posted in February that this happened after getting a tattoo. I'm not sure what the antidote would be, and if you're too sick to look into this, perhaps a family member or friend could do so for you?

    If someone could call the place where you had it done and ask what type of inks they use that would be a start. They could pose as a customer who is sensitive to chemicals, and wanting to know what the ingredients are. The other thing might be to see if there's been any other complaints from that tattoo parlor.

    Hang in there.
     
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  8. dannybex

    dannybex Senior Member

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    Also, if you could get some valium or klonopin or something similar, that could help calm things down in order for you to get through this rough patch. I remember Whitney Dafoe needing something similar as he was needing a feeding tube inserted, but could not tolerate any stimulation. He was finally able to get to the hospital and back with the aid of some benzodiazepines.
     
    SickOfSickness likes this.
  9. powertool4

    powertool4

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    Hey Danny, yeah my family wanted to take me to the er yesterday and i said im in a state where i can't. They carried me and it was so incredible hard on me i was put in a stretcher and not moving but the stimulation, the incredible fatigue and neurological weakness from sitting up for a few mins i couldn't do anything. Blood tests came back normal and now I'm super shaky, dizzy and unsure how this week will go. Couldn't talk, seriously no energy so i type via chat on my phone and my brother talks and takes care of me. This feels like locked in syndrome, unable to do anything but fully conscious
     
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  10. alice111

    alice111 Senior Member

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    I'm so sorry to hear how badly you're doing. Been there.
    I think the worst part is (and what people don't get) is you're NOT sleeping all day, sleep is never. You're lying there painfully awake and aware of every ticking second that goes by.. It's definitely a kind of human torture (not to sound melodramatic).

    My first suggestion would be to deal with the anxiety.
    I know logically one might think, well the fatigue that has me bedridden should be solved first! But, there's not an easy fix for that yet.. And I can tell you first hand, improving the anxiety (even though you are still bedridden) really really does improve quality of life, and makes its easier to just live and get through the days. I can recommend some things for this if you want?

    Second. It gets better.
    Even though I still spend 90% of my time in bed, I can live. No pain, very little sound sensitivity, I can sit up for long periods, etc etc. The days go by faster, I can keep myself relatively "busy" and I don't feel like I'm dying, or wanting to. Also, once you've ever hit rock bottom.. Man little things feel f-ing delicious exciting and liberating.. You kno like being able to sit up for long periods :p
    I hope that's somehow helpful
     
  11. powertool4

    powertool4

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    Did you just recover from this state on your own? My crash was Feb 15 and over the next month it was weird. Seemed i might be getting better with normalized sleep and what not but my stamina kept getting worse and worse and then the heart palpitations and stomach jolts kicked in. These are all familiar symptoms so i kind of thought ok I'm in for worsening of symptoms if the past is any indication. The difference being, this time around is worse than anything I've been through. Last crash was in 2009, i recovered to a point where i can live house bound in few months on and off, progressively getting stronger and in 2012 started living a "normal" life with a car, friends, lots more stamina. Never thought that was possible. By 2015, i was 80% recovered with still lasting GI issues but weighed a solid 162lbs, working full time, having a great life. Then, the previous post showed i got a serious reaction to a tattoo and crashed. I guess lesson learned, my nervous system cannot handle things like that. Tattoo ink is organic food compounds going directly into the blood stream. I couldn't even eat potatoes with a reaction so i don't know why i thought i could directly inject my skin with this stuff. Guess recovery teaches you to forget. I'm hoping it's not permanent but every day so far this week I've been wishing for death. I worry i will reach a point where i went be cognizant and a zombie or something.
    Trying something i tried before but not as a primary solution. Prayer
     
  12. jimells

    jimells Senior Member

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    @powertool4 if you have orthostatic intolerance and can get treatment for that, your symptoms may improve some. I have hyperadrenergic POTS, which includes tachycardia, cold and clammy hands and feet (sometimes while feeling hot), palpitations, etc. I have been able to double my upright time by taking a very low dose of beta blocker. While I am still very sick, every tiny improvement is a big deal, as I'm sure you know.

    When I end up at the Emergency Room I give the doctor a brief explanation of POTS and ask for a liter of IV saline. So far the ER doctors have been cooperative and the saline does help for a few days. Getting it the first time was the hardest. Now that my records show that I have received it in the past and that it helped, it is much easier to get.

    POTS can look a lot like anxiety. But rather than one causing the other, for many of us the symptoms are caused by elevated norepinephrine, especially on standing. The beta blockers block the action of the norepinephrine, and that reduces symptoms.
     
    Last edited: Mar 31, 2016
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  13. SickOfSickness

    SickOfSickness Senior Member

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    I don't know much about your insurance and financial situation, but I think you should consider getting a housecall from a doctor. There are not many doctors who do housecalls, but there are some.

    I agree with the suggestion above that IV saline might help you. So the doctor could bring or prescribe the IV saline. Once they prescribe it, a nurse would come to your house to give it.

    Also maybe you could focus on detoxing treatments, since it seems to be caused by the tattoo inks. I don't know a whole lot about them, but there are so many, and some are especially for the liver or kidneys, and some are for general detox.

    Many over the counter detoxing supplements are only around $10 or $15, and some may be less. Also, drink a lot of fluids if possible.
     
    Jennifer J likes this.
  14. Gingergrrl

    Gingergrrl Senior Member

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    @powertool4 Sorry if this was already mentioned but have you been assessed for a mast cell disorder? Of course you can react to foods and tattoo ink without one but I wonder if you have undiagnosed MCAS and if you were treated for it, if it would make even a partial difference in your daily suffering?
     
  15. powertool4

    powertool4

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    I haven't i wanted to at some point but even with cfs i feel like i have some really odd and rare symptoms. I am extremely sensitive to everything, my nervous system can't handle anything. No vitamins or anything which of course makes it impossible too treat me. My recovery came by removing all toxins, eating a very low carb diet and also consistently taking a probiotic that helped with severe GI issues. Everything is related to gi issues for me and i think it is for many. I've had weird flutters in my stomach and depression/anxiety caused by my gut even though conventional no one will say this is possible, it's always the other way around. However, healed my gut and what do you know, the feeling like i want to go poop and being punched in the stomach with butterflies all went away.
    What's hard to believe however, is the severity of my illness just because of gut issues. There are people who drink chronically that don't have my issues ... Or maybe they do and we just hear about it as alcoholic neurological damage.

    When im better enough to start walking which God knows if that day will ever come, i want to try a home fmt. Very low risk, low cost, and possible high reward.

    GI inspection will be another thing as well as the mast cell issue. Funny, i have logs of everything. My entire recovery process. You guys would not believe it, i still don't. It has me fooled that i was impervious because i was feeling so good, lifting weights at 5am and going to work for 9 followed by movies, i missed it all. I got a taste of it so i know it's possible and you guys all should too but when the physical symptoms are intolerable... It's another story. Literally lying in bed, unable to breath with my body tingling and all vitals are ok it is absolute hell.

    I'm going to make a website and post a lot of what I've learned and tried in hopes to give back to the community because we don't have the support of the medical community. It is the lonliest journey ever and sometimes makes me truly question how it's possible.
     
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  16. u&iraok

    u&iraok Senior Member

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    I'm really sorry, powertool4. I'm glad you're able to post, though that must be difficult for you.
     
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  17. powertool4

    powertool4

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    Thank you. Able to sit up today thank God. I have a hypothesis I'm working on. Basically what I did last time around for recovery. Took a long time and a lot longer than I had hoped but I got recovery. I'm hoping for the best here and that it'll work. Seems like it's not up to me though
     
    Jennifer J likes this.
  18. KitCat

    KitCat be yourself. everyone else is already taken.

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    @powertool4 and @jimells

    I don't know if this is helpful to you, but I am in a medicaid waiver program that provides me a caregiver in my home (or pays your family member who is caring for you). From your posts it seems to me like a service you might possibly be eligible for. If you'd like to know more, please let me know.

    sorry, I see jimells is in maine, but i don't know what country everyone is in. I am in the US.
     
  19. Jill

    Jill Senior Member

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    Hey,
    My partner down here in NZ sounds at your level. Its a complete nightmare. His is a v long story. I have it also. We don't live together as I'm not well enough to look after him. His elderly parents look after him (75,80). He has r/h gut pain as well as the usual IBS. We got him into hospital a few months back (his gp sent us to A&E) but silly bitch there discharge us at 2.30am. I have a complaint in with the hospital. the year previous we had to get him there as he couldn't eat. Seems theyv got a load of crap on his file. They are investigating the problem - supposedly have til the 11July. Theyv not bothered to either discuss with either he or I. I'm gonna shake up shit if I get the chance, prob is I'm not well at tthe mo so i'll be inviting them to have meetings at the house which will all stress me and make it worse for me. I feel ldamned if I do , damned if I don't. Stress really fells me, often worse than exercise. I got to doing a fair bit of walking over the summer and now have lost that. Al has been room bound for about a year. Totally sucks. Its incredible how many people are so screwed.

    Saw the heading and had to reply. BTW al tried suicide twice last year.
     
  20. KitCat

    KitCat be yourself. everyone else is already taken.

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    excuse if this is not helpful, but it looks to me like this is the homecare program in new zealand:

    http://www.health.govt.nz/your-heal...upport/community-residential-support-services

    if he is not already in this service, I hope it might be able to help him.
     

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