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Bedridden Recovery

Discussion in 'General ME/CFS Discussion' started by LillyME, Aug 6, 2016.

  1. LillyME

    LillyME

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    Since Beginning of June I am totally bedridden. 23,5/24 hours.

    Instead of getting better things go downhill and I don't understand why.

    I am so desperate and often think about all the people who are severe and can be found in the Internet.

    One guy sticks into my mind. Ben Di Pasquale.



    That's how one look who is bedridden for a long time. I have already lost muscles in 11 weeks being bedridden.

    I often think how he is. I hope he is so much better now! I want to believe that one can get better!

    Does anyone know if he is better? I do hope so!!!!! I would make me so sad to hear something else!!!!
     
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  2. Paralee

    Paralee Senior Member

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    Bless him.
     
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  3. LillyME

    LillyME

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    Please what do you mean by saying that...
     
  4. taniaaust1

    taniaaust1 Senior Member

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    Hi lilly, yes it is possible to get better from being completely bedridden. I was completely ridden myself for some time, couldnt walk to the loo even for most of near 9mths and in an extremely severe ME state (among the worst you hear about. I was going actually comatose for days at a time on occassions without waking at all, unable to understand language well and times and was having to sign language, struggled to sit and hold my head up).

    My 9-10 year old had to become my carer and an friend used to do the shopping and leave it at the door for her to put away as I was far too sick to have any visitors.

    Many years after that I had improved to a point where I was in full remission. I think that fact that no one pushed me when I was so terribly ill to me being able to start to improve at a later point. If I had someone trying to push me, I really believe I would of died as I couldnt been much worst then I was.

    Unfortunately a few years later after that remission I caught a virus going around and ended up back with ME. Seems us more severe ones are more prone to possible get some fairly severe ME again (Im back to wheelchair if leaving my house) but I havent got no where near as bad ***fingers crossed** then I was in the past (thou have some severe ME complications). I take a great deal of care to try not to make the ME worst.

    When we are that bad that we are completely bedridden, pacing wise there isnt all that much we can do. In my case I wouldnt allow myself to be woken up for my meals and just went to eatting often only once a day (If I awoke) to conserve what little energy I had. I should of been on a drip and being tube fed.

    Be aware that being bedridden will make things such as POTS worst so it possibly due to that could make it harder to sit if it isnt just about weakness making it hard to do so.

    Anyway, yes we can get better from the most aweful ME states.
     
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  5. Justin30

    Justin30 Senior Member

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    Hi,

    Did you have a great degree of neueological symptoms or was it just the typical cluster? Poor sleep, pain, PEM, flu like, etc?

    Thanks,

    Justin
     
  6. LillyME

    LillyME

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    No just the typical Thinges: Poor unrefreshing sleep, Night sweats, PEM, muscles aching, brain fog, poor concentration, exhausting through speeking. Really bad orthostatic intolerance.

    I am so hopeless that this will improve significantly.

    I hate this illness. Only a psychopath could have created this illness because with PEM it's so against nature and so against human instinct.

    Taniaaust1 motivated me but I am so depressed about the situation that I cannot believe I will come back to a livable life.
     
  7. Justin30

    Justin30 Senior Member

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    That makes many of us. This illness is wretched. I must say.

    After reading through symptoms lists i explained to my parents until u experience this it is unfathomable.

    I have talked to people that have gotten through the worst and they do exist.

    I just dont know what else to say.

    I am holding onto faith at this point acceptance and a glimmer of hope.

    I hope that our children and others never have to experience illness or the list of other severely debilitating chronic diseases.

    This is a very cruel disease in its severe form.

    Keep holding on you never know whats around the corner.
     
    Comet likes this.
  8. taniaaust1

    taniaaust1 Senior Member

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    I had severe FM with also all over severe skin sensitivity eg the weight of the sheet on me in bed hurt, I couldnt be hugged as it hurt too much, the normal cluster of viral like symptoms, sore throat, swollen glands, actual fever, hypersominia, severe weakness, severe tiredness, headaches (mostly in temples)..

    couldnt stay awake, severe sensitivity to light (blacked out room), sensitivity to sound eg would cause me to go into like seizures, paralysis at times, severe mind fog, shaking on any exertion, severe night sweats -soaking sheets and clothes. I think had low BP all the time eg 80/60 was my normal during that time I think which was the same as it had been before I got sick.

    I dont know that that point if I had POTS or dysautonomia back then as I couldnt stand due to ME weakness (which is different to what I get now with POTS).

    (I did thou have some weird result on a BP or heart monitor right at the very beginning of my illness before I had this full time when it was just starting and having little bouts at times. I was in the ambulance service and we were doing heart/BP/ECG readings and some really strange result came up which they couldnt figure out why, they tried it twice on me but had the same weird result each time.

    I seemed healthy at the time (in a well bout between bad bouts) and we didnt think more about this (it wasnt a result they were used to seeing at all), they ended up due to not being able to make sense of it, put it down to monitor faulting though those before and after me all had it coming up normal. I thought it acting this way just on me was very weird at the time.

    I wish I could remember what the ECG monitor was showing up. So maybe I had some abnormal things there in first bad years of my illness which I werent aware?).

    I didnt have MCS, food intollerences, allergy issues or IBS back then when I was worst and completely bedbound.. all which I have now. Those things came in second round of this illness for me.

    Now I tend to have BP often on higher side but with orthostatic hypotension and orthostatic hypertension, my BP is completely different to what it was before. (I wonder if that means I have actual damage now which I didnt have when I was more severe??? Maybe that could be a predictor of how likely one is to recover??? Over time my autonomic system has worsened so that symptom in my case seems more related to length of time I have been ill rather then severity of my illness)

    So I have quite a difference of my symptoms from 1st time round when I ended up recovering with this to second time round though I was far more severe 1st time round.
     
    Last edited: Aug 8, 2016
    Justin30 likes this.
  9. LillyME

    LillyME

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    I have pretty much the same symptoms but now in a severe form.

    My family and GP are forcing me to go to a hospital because they think it could be something different from ME/CFS. I don't want to go because I am sure they will not find anything. 2013 with my moderate ME I was in hospital and they ruled out everything and said it must be all in my head except the charité in Berlin they diagnosed me with CFS.

    So this time I am afraid that the hospital will do more damage than good. And will say again it's all in my head. This time I am totally disabled and cannot continue my work in part time so all the horrific things will start... To get a pension... To prove that I am not pschologically ill. They can force me to go into a psychiatric clinic etc ...it's a nightmare.

    2013 I was lucky that I was not to bad and after 9 month could go back to work 32 hours per week until March 2016. Got campylobacter and BAM.
     
  10. worldbackwards

    worldbackwards A unique snowflake

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    I was, if not bedridden, then close to for years. I spent all day lying down apart from a couple of hours, I struggled focus to concentrate on anything at all without triggering off symptoms, couldn't sustain any activity on my feet, could do little sat up, could be incapacitated by the slightest noise, found it difficult even to vary the smallest things without triggering increasingly severe muscle pain, couldn't sustain a conversation that involved me saying very much at all etc, etc.

    But I got quite a bit better. I can walk around a bit now, get up and downstairs more often than I could, do some simple cooking, am much freer in my concentration, etc. I'm still stuck in most of the time, but it is a huge relief to be the pressure of knowing that very minor overactivity might flare symptoms up for three or four weeks - I feel much more in control of things now, although of course I still have to keep it under control. I'm out of bed most of the day now (most days anyway).

    Some alternative therapies helped, as well figuring out when and how hard to push at things, what things to try and what to leave alone, how to manage difficult symptoms and having people around to look after me and do stuff that needed doing for years on end when I was unable to do it for myself. But things can and do change.

    Also, only you have control over whether you attend a psychiatric clinic / "specialist CF clinic". Waiting lists for psychological therapies are at breaking point in the UK as it is (I expect this is where you are?) - if you don't turn up to appointments, no one is going to chase it up. You can always say no. Dig your heels in when necessary.
     
  11. LillyME

    LillyME

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    Thank you worldbackwards.
    So good to read that you improved and manage a life out of bed! I think bed is for a ME Patient something that one do not like at all.

    The only thing I know is that this disease is unpredictable. I never thought that I could be so disabled so quickly.
     
  12. Snowdrop

    Snowdrop Rebel without a biscuit

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    Hello @LillyME

    Welcome to PR.
    If you were bedridden right from the beginning of your illness (since June) the best thing you can do for a recovery would be to rest as much as you can. Even bedbound we do things that use up energy.

    It is very hard advice--people who are not ill have no idea how hard it is to do nothing but that's what your body most needs right now. Do you have someone who can help you with activities of daily living?

    Hopefully things will improve but it never happens as quickly as we want.
     
  13. LillyME

    LillyME

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    My father is doing everything for me. I cannot even prepare the breakfast.

    Washing my hair is getting really difficult. My muscles in the arms ache for days. So I only shower every 2 weeks.

    So is just lay in my bed and on daytime I switch to couch just to be in a different room.

    I only get up for toilet or for changing the room.

    Last two weeks my muscles in the arms are aching so much. I cannot hold my smart phone any for a longer time.

    I should not do anything but sometimes I take my smartphone und go to the Internet just to distract my self.

    And then there is this huge pressure from all family members and GP to go to hospital. They don't understand that this is to exhausting for me. They will do everything there. MRI, lumbal puncture, tilt table test and so on and on.

    My GP said that she cannot take any further responsibility that I lay in bed.

    No I was not bedridden right from the beginning. I got campylobacter end of March 2016. But something was triggering every 3 weeks I went down hill. I don't now if it was a relapse with campy. Stool samples were all negative except the first one. With the "3rd Relapse" I was Bedridden. In went Downhill in Stages between end of March and since june bedridden.


    I
     
  14. Snowdrop

    Snowdrop Rebel without a biscuit

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    It's a difficult situation to be in. I don't know anything about campylobacter and illness but if you were more able you would probably benefit from some tests to at least eliminate possibility of other health issues.

    This too is a double edged sword because when medics find nothing in results they tend to think nothing is wrong. :rolleyes:

    All I can offer is that you are certainly not alone in your experience.
     
  15. Timaca

    Timaca Senior Member

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    I am so very sorry for your situation. I will say what helped me just in the smallest chance it will help you. I have taken antivirals and antibiotics. Those have helped a lot.

    I went on a significant elimination diet. That has helped tremendously. It seems that I have trouble with the top food allergens: wheat, dairy, gluten, nuts, seeds, eggs, corn....and the list goes on.

    Most recently, I shockingly discovered that chlorine in pools is a huge problem. I went from very functional to not being able to move in 3 hours. I hope to write a blog post about it soon. I discovered that shocking truth in June. Last Saturday I did much more exercise in a salt water pool and was just fine....

    You can read more about my food discoveries in my blog post if you are interested. I really need to write an update, so maybe I will by the end of the month.

    Wishing you hope and health,
     
    Rlman likes this.
  16. Daffodil

    Daffodil Senior Member

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    @LillyME ..I was bedridden, sent money to Dignitas to be euthanized. in agony 24/7. would sit in window sill, trying to jump.

    now, I am so much better I am thinking of starting part time work

    I saw dr. Kenny demeirleir.
     
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  17. LillyME

    LillyME

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    Can you tell me more about KDM. I live in Germany and Brüssel is 2 hours drive away. I thought going there with a camper. Lying down. I already contacted the clinic and they send me the paper. Because of doing the breathing tests for 4 hours sitting in the waiting room it's not doable for me.

    Can you tell me what helped you?

    They told me I can get an appointment within a month or two. Today I want to schedule an appointment.

    I have to say that I think about suicide the last weeks because i had already have this nightmare 2013. But I was not as bad as now. I could leave the house and go to doctors, I could drive and I had no cognitive problems. I recovered a bit and could work part time but recovery was small beside orthostatic intolerance. I approved from 3 hours sitting to 8 hours sitting.

    I cleaned my life. Ending of an stressing relationship, changing medication for endometriosis which I now better tolerate, no stress, peaceful life and eve thing was really good. Happy that the winter was over because winter is cold time and therefore I am happy if the winter is over and I did not struggle to much with colds. And then I got campylobacter. What a bad luck!

    I am doing all I can to avoid viruses or bacteria. I do not touch things in public, I always have a desinfection liquid with me. At work i did not touch the door handle with my bare hands always with paper also in the kitchen at work. I did not go the cinema in winter or to restaurants. Did not see my niece and nephews in winter. Did everything to prevent a cold. Did not touch my face with my hands. I was so shocked by 2013 that I said to myself I have to be very cautious in wintertimes. So happy the winter was over and got this shit campylobacter. I only eat organic meat but did not now that organic chicken is 80% contaminated with campylobacter. I am always very very careful with raw meat. I do know salmonella but never heard before of campylobacter nor did anyone I told that. But campylobacter infection is more common than salmonella. Salmonella infection is going down because there is a vaccination for animals. So the public should be more informed about the hazard. In comparison to samonella where you need one million bacteria to get ill, you only need 500 bacteria to get campylobacter. It's a fingerprint touch enough and you get ill.

    And this infection made me bedridden.

    I am asking myself where is the point?

    I had a calm life. Was on a level of 45% but could live with it very good. I worked part time. Was very happy with my job and soretd out every stressful things out of my life. Eat very healthy. Now sugar, no gluten, no wheat. Took good NEMs.

    So it seems that my system was still not stable and I relapse so easily to the worst.

    So I cannot see the point. Nothing makes sense to me. Next virus and I cannot move myself in bed and I do tube fed?????

    That's why I thing sometimes about suicide because I do not understand what's wrong...

    I often think how people handle there ME when they have small kids who are permanently I'll especially in kindergarten time.

    When I get a little cold I have to lay in bed for weeks. Because i could not afford being sick to often while working I had to prevent it by all means.
     
  18. Valentijn

    Valentijn Senior Member

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    You can probably skip these tests. Talk to the receptionist or mention it in the email.

    There's also rooms where you can sit with your feet up, or lie down on the padded tables in the nurses' area, and I think there's a room where people can lie down in the dark as well. Usually I sit on the floor in the waiting room if my orthostatic intolerance is causing problems.
     
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  19. Daffodil

    Daffodil Senior Member

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    @LillyME yes they have beds where you can lay down. you can refuse any test you want or cannot do. they understand...they have helped many severe cases.

    i have been sick since 1993!

    KDM believes the illness is caused mainly by intracellular bacteria but he treats according to what he finds you are infected with. He is finding Lyme in 75(?) % of his patients.

    He also treats gut flora issues.

    Since you are so sick, maybe he will give you IVIG and various supplements...

    While you are waiting for an appointment, you can get the LTT ELISPOT test for Borrelia, which is a test he always orders. It is available at Armin Labs and Infecto Labs, both in Germany.

    You are lucky..you are in the best location to get help!

    xo
     
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  20. LillyME

    LillyME

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    Lyme? I was beaten by a tick recently. The only time I now if was when I was 6 years old.

    I could still have Lyme after all these years?

    I did a LTT test for pneumonia two months ago. It came back negative.
     

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