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How to cope when you are left behind

Discussion in 'Lifestyle Management' started by soxfan, Jun 25, 2011.

  1. soxfan

    soxfan Senior Member

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    For the first few years of my illness I tried to keep up with family activities and seeing friends, working etc...
    If I wasn't able to attend something my husband wouldn't go either. I always felt terribly bad about this and had and still have alot of guilt.

    After being sick now for almost 7 years now I have been asking my husband to please go without me as I don't want him missing out on life also. He will go to family events and other things without me because I want him to. My brother in law just bought a very nice boat and my husband goes out with him on some weekends. It is just too long of a day for me to do this.
    It is beginning to seem as though we are living separate lives now....We are at the point in our lives where we can basically do what we want whether it be traveling or just going away for weekends and I am at the point where I will just end up in bed the entire time.

    I have had to cut down my hours at work so I now don't have the contact of my co-workers as much. I have gone downhill the past year tremendously and I have no idea why. The fatigue is much more intense and I am having new symptoms.

    How do you cope with the feelings that your life feels as though it is over and there is no hope of ever feeling well again...I just don't want to start taking all this out on my husband who has been 100 percent supportive of me from day one. I just don't want him to miss out on life because of me but it is so depressing being left behind all the time even though that is what I feel I have to do for him...
    No one else in my family (siblings, mother etc) don't understand this illness or have ever tried to which makes things much harder. I went to NC on vacation a few weeks ago and spent 70 percent of the time laying in bed...while they all went out enjoying themselves. How do you all cope???
  2. Esther12

    Esther12 Senior Member

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    These sorts of things are difficult soxfan.

    It's important to feel like you're able to talk things through with you husband, so that he knows you want him to be able to go out and enjoy things, but also feel sad about not being able to join him. If you wanted him to also spend a bit more time playing with you at home, it sounds like he'd be happy to do that.

    CFS can be really isolating, particularly because it's so poorly understood, and there's so much room for people's prejudices. Looking back, I think it would have been better for me to accept that my relationships with most people were going to have to dramatically change once I'd got ill, often in ways I didn't like, but that I could still get something worthwhile out of some of them. As it is, I don't think I put enough effort into forming new relationships with old friends, and tended to loose contact with them instead.

    Not sure if any of that will be of use to you - good luck with it all.
  3. maryb

    maryb iherb code TAK122

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    Soxfan - I sympathise totally with you, my husband is an outdoor sportsman, he is like a caged animal if he has to spend time indoors during the day, i know exactly how you feel. I spend time too encouraging him to go out and do things without me. We used to walk for miles together with our dogs before I got ill, now its just a dream I have of when I get better. I know he feels guilty but I always say I've been fine when he returns even if I haven't. Enjoy the times you have together make them more special if you can and spoil him when you can. Thats basically all I am able to do, I appreciate him so much for all that he does without complaint, but don't forget life is about choices and my husband nor yours would be there for us if they didn't want to be.
    I don't work though, I haven't been able to since becoming ill. It is very isolating but at least I don't have that stress as well - I can't imagine how hard it is for you having to push yourself.
    I just potter about so small things take up my time, it would bore the hell out of a normal person to hear how I spend my day, but I've learnt patience and humility. I too like so many ME sufferers have lost most (nearly all) of my former friends but as my world has become smaller I find I don't miss them as much as I once did.
  4. Carrigon

    Carrigon Senior Member

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    I've missed every wedding, party, birth, birthday, family gathering, holiday for the last twenty years. The first few years, that was the hardest, and no one believed I was too sick to go. Even to this day, my cousins still think I didn't go to their weddings out of jealousy, which is totally not true. I was bedridden during those years.

    As the years have gone on, I just don't think much about it anymore. Thanksgiving and Xmas bug me. That's the time when you really realize you aren't with family. But mostly, I just don't think about it now. They are all lucky they are healthy and can do stuff together. I usually spend the day in bed with my cat.

    I don't know why this happened to any of us. It's one of the worst parts of the disease. We become so isolated.

    But the truth is, it gets worse. When I started to feel a bit better and was finally able to go to a few parties and gatherings, I found that the sound sensitivity and the sensory input of too much sights, sounds, smells, lights, all of it nearly killed me. I actually had to leave. So I couldn't enjoy any of it and found I can't be at gatherings much at all now.

    It's a cruel disease.

    All I can say is, try not to dwell on it and find something else to take your mind off it. Anything, watch a movie or something that day.
  5. soxfan

    soxfan Senior Member

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    I have been sick for almost 7 years so maybe I just haven't accepted yet that I have no choice but to change my life..my way of thinking. I am trying to learn that if I do go to a family gathering I can't stay the entire day..just a few hours. That way I wouldn't have to suffer for the next 48 hours. The other problem is that my husband works every other week nights so he works an 84 hour week and then has the next week off. So
    for one week I am basically alone and the other I want to spend time doing things with him.
    I have missed out on many things and know in the future it will be many more. I am sometimes so tired during the days that I can't read or even watch a movie. I just have to lay in a quiet room and rest even though it does no good.

    I am working on the accepting part but know it isn't going to come easily..especially when you don't have the support of family. I can't totally blame them because they don't see my day to day life and what it is like. They only see me at the functions I can attend and think I am doing okay when it is really extremely difficult to even function.
    It is funny because the other day a friend remarked to my husband how good I looked and that the treatment must be working...I am not even on any treatments so that is how deceiving this illness is to others...

    Thanks for everyone's thoughts on this and I know we are all dealing with the same things...
  6. Misfit Toy

    Misfit Toy Senior Member

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    Soxfan, I am from New Hampshire! Used to live in Sunapee. Anyway, can you stop working? Then you might have more energy and could do more. I work as well and working kills me. I am single and on SSD but need an extra income, plus I like what I do. This summer, I am taking off however. So, this past week I have been crying about this. And, as Carrigon says, it gets worse. 22 years and as the years have gone on since 1989, when I got sick, I am more isolated. I am older and single which is really hard. All of my friends are married. My one artist friend invited me on an awesome vacation that 2 days ago sounded great. But ever since then I am sick and in bed with no energy. This trip would require energy. There are days I can do things and days I can't. I am grateful for when I can, but it can turn on a dime and then I am sick and in bed. That is the worst, the not knowing. Just when I think, there is no way I can do A B or C, I end up being able to do it which is awesome but it can quickly go the other way too.

    I have been crying because I feel like life is moving on, but nothing about mine changes. I have no one to share anything with...no man, no one to say, "hey babe, this is what we did a year ago." It all feels so superficial. I take vacations best alone, which sucks.

    In other words, I feel isolated and sad. I watch so much tv that I am sick of tv. Sick of it.

    You have to change your life. It is what it is. You will become worse if you don't. The depression is bad but take it from someone who knows, the more you keep working or pushing, the sicker you could become. I was doing much better when I lived with my mom years ago and had a responsibility only to me and to nothing else. When I didn't work. If anyone had ever told me this is a progressive illness, I would have been in denial because I could never accept that at a young age. Now that I am 40 and in chronic pain from fibro, which I never had until 12 years into CFS, I can say it is progressive. My symptoms have changed, evolved and become worse. I used to travel and drive 7 or 8 hours to Vermont and NH. Now, I have to fly or drive 4 hours one way, find a hotel and finish the trip the next day. I am still beat up from doing that.

    No one understands either. Only other CFIDS folks. Hang in there. You are not alone. I don't know if I will ever accept my fate completely. It still causes such a feeling of loss and depression.

    Everyone always thinks I look fine, am fine, etc. Even CFS people. I can dress nice, wear makeup, and play the part; but over the past 4 years, I have taken a turn and spend more times in pajamas then regular clothes. I used to shower everyday, but not anymore.

    It's very hard, sad and depressing and I wonder sometimes, "why am I here?" But, I firmly believe, there is a reason we are all here.
  7. MEG

    MEG Senior Member

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    Soxfan,

    Ohhhh, do I understand. And you have gotten some wonderful responses.

    One thing I would like to mention, that just might help a bit when it comes to dealing with the isolation and ultimate acceptance of our disease is this.... Toni Bernhard (one of us) has written a book titled "How To be Sick". She leads us through a Buddhist perspective of chronic illness. Now, I am very Christian, however, I have been helped greatly by this book. I am now very empathetically able to feel what my husband has been through, and it has opened up discussion time for us that has brought us closer. We are understanding each other's perspective more. The book has also helped me to "reframe" my limitations, and to begin to find the positive side of all this. There are positive's....even though it is hard to believe. I have confidence you can find them! Even if things get worse, as Carrigon points out. It does get physically worse....at least it has for me. That is why I am trying so hard to apply the lessons in Toni's book...

    I am concerned that you are still working. I did the same...pushed myself through keeping a part time job twice. Those jobs really took a toll on me, and I think I became more ill, quickly, when I worked. Is there any way you can stay home....have you applied for SSD? Do you feel able to do this psychologically....it is hard, but then you can rest your body as you need to.

    I will keep you and your husband in prayer...

    Hugs,
    MEG
  8. caledonia

    caledonia

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    Yes, the social isolation is getting harder as time goes on (almost 11 years into it). I'm currently making it a priority to make sure I get out a little more. I try to limit my outings to a few hours, so I'm not too PEM'd afterwards. There's nothing like some bad PEM to make you not want to go out, which then becomes self-perpetuating.

    If my BF wants to do something, he's free to go and do it. I ask him to "take notes and give me a full report" so I can vicariously experience the event. A lot of times he doesn't go because he'd rather go with me, but sometimes he does and that's ok too.

    As far as cutting back on hours at work - if you can't work full time, you're eligible for disability. It's a mistake to drop your hours to part time because then your disability will be based on a percentage of your lesser income, which is already small to begin with.

    Technically, you can keep working part time and apply if you keep it under the Substantial Gainful Activity amount, however, many lawyers/experts will tell you it's better to quit working while applying because the question they will have is "if you can work part time, why can't you work full time?".
  9. soxfan

    soxfan Senior Member

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    I am so grateful for these wonderful responses to this..I want to let you know some facts. I only am working one day a week which is usually 5 hours. My boss lets me pick my hours because he knows I can't work long shifts. He will basically let me work even one day a month if I want. I told him it is very important to me to keep in contact with the world. Plus I have been there for 19 years and don't want to lose my pay rate because I still HOPE that someday I will be well enough to work 2 or 3 days a week. I was never a full time employee so I can't get any kind of disability. I don't have to work thankfully but want to try and keep that one day.

    If it becomes too much for me then I will certainly quit. Right now working that one day is not having an effect on me. I am very tired no matter what I do or don't do. My sleep is playing a huge part in all this because I have totally unrefreshing sleep and no doctor has been able to help. I wake up tired every single morning.
    Luckily I don't experience pain....

    I am working on accepting my limitations but it is soooo darn hard when I have the opportunity to do whatever I would like but my body won't allow it. In fact my husband is out on his brother's new boat today at an air show.
    I think pushing the past 6 years has finally put me in this position. I was still exercising and working for 2 years in the beginning because my doctor told me too. He said it would help. Plus I attended every family function and tried to pretend to be normal.
    In fact just last night my husband and I were talking and he said that he is sad because all we talk about is my illness and he is so right. How do we go back to being a couple who talks about normal things...it has totally taken over and I don't know how to fix that. Because I feel so horrible everyday it is hard to hide it from him.

    As the years go by and I am unable to do things I did a year ago the hope fades..I don't see that I have much to look forward to. I really feel hopeless and helpless and that I am also ruining my husbands life. I know he wouldn't be here if he didn't want to but he would never leave me and has been my lifeline because he has always believed that I will get well and he won't give up.

    So I hope I can find a way to try and look forward and not dwell on what I use to do or feel because I feel like I am in a sprial going downwards...

    Thank you all again for your wonderful words..

    Kim
  10. Carrigon

    Carrigon Senior Member

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    Instead of looking at it like, everything is going downhill, try just taking one day at a time, one hour at a time. If you dwell on what might or might not ever happen, that's not living. You need to live in the here and now. And just do what you can. I try to look at things like, if God wanted me to work, I'd be working. Maybe we're just meant to do other things. Life is short, you need to do things that make you happy. Even small things. We are the ones who put the most pressure on ourselves. Don't set big goals, set baby step goals. If all you can do is drag yourself into a shower that day, that's a goal. Or if you happened to make something to eat, that's another goal. And if you somehow have any energy to do something else that day, that's a big thing. And if you don't, you don't.
  11. MEG

    MEG Senior Member

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    Carrigon,
    How uplifting. I love your "life philosophy" and try to do the same. Some days I need a reminder....that baby steps are OK. It has taken me 10 years to get to the acceptance phase...and now I am enjoying life again.

    Jesus is with me every step, every day. I am thankful for this.

    MEG
  12. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    Friend on another forum (a gaming one, oddly enough) I found out his wife had severe M.E.
    She died not long ago and naturally, he is uttelry distrought.
    Life's not about "winning" and "Losing"
    Love, friendship...far far too complex to quantify in simple ways.
    well if someone loves you enough to stay with you when you are so ill, asking them to leave would hurt them terribly feeling forever after they betrayed you etc. It would ruin their lives, leave them feeling guilty.
    Those who are truly, deeply in love NEED TO BE WITH YOU, REGARDLESS OF CIRCUMSTANCE!

    But some relationships, lets be honest, are more about fear of being alone, sex, comfort, than truly deep love/care, and folk should be honest with that when so.
    And others start out that way and end up deeply in love with each other...such complex issues, way relationships can change POSITIVELY as well as negatively

    I am going to suggest something though
    Alas, today, we've got a damn stupid "monogamous only" style idea of relationships. In relaity, it's nto that simple at all.
    Now, betrayal HURTS, being decieved is oen of the absolute worst, most hateful and hard to forgive things there is, so the obvious proviso applies: don't do it.
    But...a both biologically and secretly most folk are NOT monogamous.
    It's very very hard though to deal with a single relationship though, never mind a trio or even more.
    Such do exist though and always have through histroy, and some been very stable.

    And there's plenty of folk who need sex but who's partners cannot have sex, who then seek other routes for that, but still love their partners.
    All exceptionally complex, and usually not done and screwed up by jealousy, insecurity etc.

    Rather than sex, the issue cna be companionship in/around town (ie, like going out), or need for children etc.

    Should never push unwilling folk into such relationships as that's guaranteed to end bad
    But takes all kinds of folk to make this world, alas, msot of us get pushed through the "square hole" to fit the role' society insists we must fit, blech.


    If yer partner truly loves you, realize that is as essential to them as food/air, not letting them love you, sick or not, would cripple or even kill them.
  13. Orla

    Orla Senior Member

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    Hi Spitfire, and all, this is how I often feel about my life. My contact with so many people is brief and superficial. I am not really involved in people's lives, and they are not involved in mine (or have any idea of what it is like). Luckily I have some sick people I have contact with over the phone and internet, but my face to face contact is limited and it feels superficial a lot of the time. It is very frustrating to feel that so many of us are on the outside looking in.
  14. Nielk

    Nielk

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    [​IMG]

    I feel your pain,
    Nielk
  15. taniaaust1

    taniaaust1 Senior Member

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    I hope i havent posted to this thread already as I cant get the second page of it up and Im usually reliant on checking everything as I can never remember what Ive posted to and what I havent, (its coming up that its "forbidden" for me (Im coming up with all kinds of error messages at this site lately).


    I like the others are wondering if your work is impacting you far more then you realise. if I tried to do 5hrs or work straight, if I did somehow manage to do that, I'd be very sick for the next week or two but if you arent noticing any post exertional affects, so maybe your body is fine with that.

    Thou as the others said this illness seems to be usually progressive (if you have ME kind of CFS), till you get the actual physical abnormalies happening (eg prolapsed mitral valve or whatever) things could still change for you symptom wise some as the symptoms can often go throu stages.

    Eg neurologically I was extremely bad a few years back..but now neurologically Im much much better and not getting neurological symptoms. Even things which occassionally show up on our brain scans can sometimes change and go.

    So please dont loose hope that in some ways this illness can approve. I used to have severe MCS with it all and now I only slightly do. I used to have FM with it but now dont. (my ME has followed thou the patten cheney describes and I still cant do much at all due to post exertional symptoms but they only come in if i do over do things so I can be almost symptom free if I live a very restricted life.. I can do whatever I like but only in short bursts. I could travel overseas if I planned things right.. doing a tiny amount at a time. I was previously long term bedbound).

    Im thinking that things may be better some for you if you managed to change your expectations and mindset about many things. eg spending 70% in bed on vacation is great .. you managed to be out of bed for the other 30% of the time.. you also managed to get away in the first place.

    When i go on holidays bedrest and rest periods is included in my holiday plans. I will make my plans far longer so I plan a longer time away eg what most would plan to do in a morning.. I'd plan to do over 2 or 3 days or plan it over 2 days and be planning just to stay in hotel and doing nothing at all on the third day as Im planning ahead for my recovery times. Nothing usually takes me by surprise as I know my limits and how much I can do in a day without making myself worst.

    You said your family isnt understanding (thats a very common issue) when it comes to getting together with them as a family but maybe even here there are things you could change to help yourself.
    eg one christmas I crashed big time when I was with my family (as Id tried to peel the vegatables while sitting at a table). I still thou didnt miss out on the family christmas atmosphere (I was bad enough that i probably should of gone to hospital as I was struggling to breath) so I ended up laying on a bed in the next room where I could quietly lie but still hear everything my family was up to. I could actually too see throu the doorway and see them whenever I opened my eyes. Thou I was out of the room they were in and in anothers bed.. I still didnt feel left out due to that. If I had had noise intollerance at the time or brain overstimulation, my solution would of been just to put in ear plugs (I used to keep them in my purse for such things).

    Outing at zoo. I brought myself a van so I can lay in back (I put a mattress in it etc) while another drives (yeah its illegal so I shouldnt be condoning it but doing things like this enables me to live some kind of life). As I cant walk too much.. I hired an electric wheelchair so I didnt tire myself out as much or collapse. I also took a picnic blanket with me and actually layed down in the zoo and had a sleep when I needed to do so. I had a great day.

    Anyway.. Im just saying you may need to do a lot of changes but you dont need to let this illness completely ruin your life. You just need to lead it differently to suit your symptoms etc. and be okay with having to live it differently.

    Maybe you can start up a new hobbie which you could share with your husband. Lately Ive got into DVDS (from the library, they can get in anything I request).. I will often tell my partner of the various things Ive watched. (It is hard to find interesting things to talk to him about without talking about illness). I also right now are messing about with photography and like showing him what Ive done there.
  16. soxfan

    soxfan Senior Member

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    I am working at trying to stay positive and to remind myself of the things I can do. I will say honestly that part of the problem for me is that I am embarassed to say to family during gatherings -hey I have to go lay down in a quite room for a while. The other problem is that once my mind/body becomes overstimulated it will be in that condition until the next day. I need a whole nights rest in order for it to quiet down. I have tried laying down during holidays but it seems to make my body even more uncomfortable and restless. Plus my entire family is rather loud and rambuctious so it is very difficult. My brother in law has a boat which we have been invited out on but I felt I couldn't make the trip. Come to find out it has 3 bedrooms on board and he basically said there was one always reserved for me!

    I know I can do more than many people on here and I am very grateful for that. For me it isn't all about not being able to attend functions etc..but the fact that I am so extremely tired most of the time that even reading or watching tv is hard. It is how I feel that is alot of the problem. My body/mind seems to get overstimulated very easily especially when being around people and that is one of the worse feelings I have with this illness. I have not found anything to help calm it down and as the day progresses it becomes worse so I have started to avoid all situations where this happens.

    My co workers see me looking good and just the fact that I work one day a week makes them all believe I am well. But they forget I use to work 5 days a week at one time. I do suffer after working (immediately). I come home and collapse and am useless until the next day. I definately have PEM but it has always been immediate sometimes lasting 24-48 hours.
    I also am unable to nap during the day as my body is unable to relax enough to get a good nap in. I can only lay in total uncomfortable exhaustion. I know when I do things that I will pay that price. Resting during the day is useless to me and when I get up I almost always feel 100 times worse.

    I should definately be grateful that I could go away to visit my son. If I didn't make that attempt then I wouldn't see him very often. Air travel makes me very sick so when we can drive it is much better.
    If I can get over the embarassment of having to lay down everyplace I go and not worry about what others think then I would be much better off. I know now that family will never understand this illness nor have they attempted to. Another problem is my sister has MS and leads a much better quality of life than I do. She is much more active so I am being compared to someone who has a well known illness and can function way better than me.

    So I will keep working on this and try to come to acceptance in my limitations and how I can manage this. I am very blessed that I have a husband who is extremely supportive and knows the real me and what this has done to me physically and mentally. I don't have to pretend with him..

    Thanks for the message....I am so appreciative that you took the time to write because it was very helpful to me.
  17. taniaaust1

    taniaaust1 Senior Member

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    nods. We need to try to slow down BEFORE we get to that point.

    I think something hormonally is going on too with us which dont help with that. I know myself from my test results that my adrenaline levels are very high (out of normal range). If you have a good GP maybe you could try clonazapam (helps to protect and calm an over active nervous system and slow all the brain firing down) but the main key to dealing with the issues is to only be around others for short periods of time and knowing your own bodies limit with it.

    nods and it is hard to do but its something you do need to do at times for your own health.

    sorry to hear that for you resting more doesnt help
    sending you **hugz**
  18. soxfan

    soxfan Senior Member

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    I did have some ativan which I took a few summers ago when my dad was dying. It helped with the anxiety of all that but never seemed to help with the overstimulation. I will say it helps me fall asleep if I have had one of those days. I work one day a week and within a few hours I can feel my body becoming overwhelmed. The same with family gatherings or even shopping. I don't think I actually shopped in years because of what would happen to me afterwards. Now I can shop and when I feel it coming on I will leave the store.

    I guess either I am too stubborn to just give up or I would rather deal with the suffering afterwards. If I didn't attempt to do any of these things then I would never leave my house. Maybe I will get worse by pushing myself or maybe not but I have to keep trying. I have found that no matter what I do or don't do I am still extremely tried from the time I get up till bed. The only thing that changes is the degree of fatigue and the overstimulation factor. I will discuss that with my doctor next week on what I can do to get my body to slow down and relax afterwards. Hugs back....

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