Disease Progression

Recently, it has become much more difficult for me to use the commode. Even though it is just one step from my bed, attempting to use it under normal conditions involves extreme difficulty breathing, muscle weakness (due to cellular fatigue), shaking, and a constant battle to maintain consciousness. Nevertheless, I have been determined to continue using my commode, mostly because I haven’t wanted to face the other options. This changed last week.

One night last week, as I was laying in bed watching Netflix on my tablet, I suddenly had the odd feeling my bowels had released themselves. I wasn’t sure – there had been none of the usual warning signs – but still, the suspicion nagged at me, so I grudgingly made my way to the commode to check. Sure enough, my bowels had released themselves – all over the place! This isn’t easy to write about – I tend to feel embarrassed/humiliated over such issues – but it is part of ME, and documenting this illness is the primary purpose this blog exists. So share I will – even the most humiliating aspects.

Anyway, back to my night of horrors. My husband was asleep, so I woke him to discard my soiled garments for me. This is embarrassing in and of itself (“Here honey, take my poopy shorts and underpants and wash them for me, will you?”), but by now my husband is used to gross requests, so he didn’t make a huge deal of it. By the time he returned to the bedroom, I was in pretty bad shape, gasping for air, shaking violently, and on the edge of passing out. Lawrence (my husband) offered to help me further, but I’d had enough humiliation for one night. I was determined to clean myself, by myself. I began the tedious process of wiping once, then sitting back and gasping for air, clinging with all I had to consciousness, before finally feeling it somewhat safe to attempt to wipe again and repeat the process. Lawrence offered to help several more times, but each time I refused with a breathless grunt or quick shake of the head. Finally, I realized it would take me all night (and most of the next day) to get clean on my own – and that’s only if I didn’t pass out (a big if!). I asked for help.

Lawrence immediately came to my aid, spreading a towel out on the bed for me to lay on. At this point I could not stand on my own, so Lawrence had to half-carry me the few feet to my bed and help me get laid out correctly. He then proceeded to don some gloves and clean me up. After this, I asked him to bring me my pulse ox monitor to check my heart rate, since my heart had been going absolutely crazy this entire time. At this point, I’d been laying still for approximately 30 minutes, yet my heart rate was still bouncing between 160-170 bpm. I hate to think what it was when I was actually upright! After everything was finished, Lawrence helped me sit up on the edge of the bed so he could slip clean garments onto me. I could not remain upright on my own, so he had to hold me upright while slipping first one leg, then the other through the appropriate holes. He then stood me up and held me while he and I somehow managed to pull everything up where it needed to be. Then he placed me back in bed, tucked me in, and left me still shivering, breathing hard, and experiencing crazy heart stuff for quite some time as I struggled to recover.

This experience turned out to be the final straw. Combined with the extreme difficulty and risk factor involved in commode visits over the previous month or so, it forced me to realize it was time to look for other solutions. I contacted my hospice team, who brainstormed ideas. I cannot use a bedpan on my own, and since I am without a carer for approximately 11 hours most days, that simply wasn’t an option. The only thing left was adult diapers. I hate that term. “Diapers.” As if we don’t feel enough like babies without calling our undergarments diapers. Whatever name is used, this is now our solution. It’s not perfect. Sometimes it leaks – especially if I have to urinate more than once per change, but bed pads do a great job of absorbing any leakage so we don’t have to change sheets.

I’m not proud of this latest progression. I’m still extremely uncomfortable allowing myself to “go” in bed. But it does save valuable energy, and prevents the horrendous symptoms associated with my attempted use of the commode. I try to tell myself there’s nothing to be embarrassed about, that this is a normal progression of my disease, and I should simply accept it and move on. But there’s something inherently humiliating about asking your husband to change your diaper, to deal with the smells and messes, and to wipe you like a baby. It’s hard. But it’s ME. Hopefully this aspect will get easier with time. Until then, I’ll be here documenting the good, the bad, and the (very) ugly.

To all my fellow sufferers, hang in there! Despite the isolating nature of this illness, we’re all in this together. Hugs all around!

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20 thoughts on “Disease Progression

    • Thank you! I made a promise to myself when I started this blog that I would be brutally honest, even about the more embarrassing aspects of ME. I feel like it’s important for people who don’t have this illness to get a glimpse of some of the aspects people may not talk about as much (at least not in much detail). I know I’m not the only one doing this (thankfully!), but I figure the more people sharing, the more likely those who need to see it will run across information portraying the stark reality of ME.

      ((Hugs)) back at you! 🙂

    • Aww, thank you! I have a post currently stewing in the back of my mind about carers. They really do deserve more recognition than they tend to receive. Without Lawrence, I’d be soooo lost right now! He really has been quite the trooper. 🙂

  1. Huge hugs. You say you’re not proud of this latest progression, and I totally understand that, but in my opinion you *should* be proud. Proud that you have such strength of character to make this difficult and unpleasant decision. Proud that you are still hanging in there. And proud that you are willing to share your experiences with the world in order to educate others. You are a beautiful person and I, for one, am very proud of you. And I think your husband is wonderful 🙂 (My recent blog post about carers definitely applies to him too; he deserves the highest honour your country could bestow.)

    Just one thing I want to share with you. A friend of mine, who is the husband of a very severe ME sufferer, recently messaged me after reading a blog post of mine about loss of dignity. His words deeply moved me and so I want to share them with you. He said, “If this helps, in my experience with [my wife], there is no loss of dignity, just immense admiration for her courage , determination and immense spirit.” And that goes for you, too. Bless you xxx

    • Awwww! Your words made me cry! Lol. Seriously, thank you for writing such a heartfelt and well worded response. It means the world to me, and what you say makes a lot of sense. I loved the quote from your friend as well! Very encouraging indeed. Thank you again for your extraordinary words of encouragement!

      I’m a bit behind on blog subscriptions, but am headed over to catch up on yours now! Hugs!

  2. morning , i get your blog .like you I HAVE M.E lot health problems

    VERY VERY WELL DONE TOO YOU FOR TALKING ABOUT BOWEL PROBLEMS…i all

    so have bladder problems.IT NEEDS TOO BE TALKED ABOUT .IT IS VERY VERY

    EFFECTING . i have to wear ADULT PADS..NAPPIES.if you would like a chat

    any time please do e.mail me .my e.mail mkentdad12@outlook.com

    even trying to use a commode is DIFFICULT ..yes,it can be very very

    embarrasing .as you say it is part of m.e .BUT NEEDS A LOT MORE TALKING

    ABOUT.

    i am married 15 years .we have 2,boys and 1,girl

                            mark

    ________________________________ > Date: Tue, 10 Jun 2014 21:57:17 +0000 > To: mkentdad12@outlook.com >

    • Hello Mark! I’m sorry it took me a bit longer to approve and reply to your post. For some reason WordPress labeled it as spam. Thankfully I happened to check the spam folder and see it!

      I appreciate your kind words. I’m sorry to hear you also struggle with bowel issues. It’s definitely an all too common problem in ME that doesn’t get talked about a whole lot. I have seen a few other posts on the topic, but the more the better, I figure. Thanks again for stopping by and commenting! Take care!

      • Good thing you checked your spam folder; otherwise Mark’s comment would have been discarded. It was probably sent to the spam folder because of his unusually large amount of caps. You’re right – there isn’t much written about the “outlet” parts of our bodies as opposed to the “intake.” I can’t say enough positives about the courage exhibited by you.

  3. Brave of you to tell how it is! And happy for you you’ve such a nice husband!

    Ask your team for other diapers. Tell them what you have now is for only once. There are diapers which can hold much more water then for only once. I’m from the Netherlands so I think it won’t help when telling which brands. But tell your team. My first diapers in 2005 where also for only once, it was so exhausting to be changed after each little pee. I thought it was normal, that there weren’t other diapers. But as I finally told the nurse I heard there were a lot to try. So talk to them about this, only one pee and then leakage is not necessary.

    And yes, it do gets easier but it takes time and for me I’m still not completely comfortable after all this time. Guess there always stays a bit of awkward feeling…

    • Thank you! Unfortunately, I did talk to my hospice team, and these are the ones that are supposed to hold 2-3 “releases” of urine (the thickest available). I also ordered another well known brand’s heaviest diaper which was also supposed to hold multiple releases. It leaked on the first go. Apparently my bladder holds a lot! Also, because I am completely flat, everything I release immediately flows to the buttocks area, so the extra padding in the crotch does almost nothing for me. I’ve heard and read reviews for both of the diapers I’ve tried where people said they are able to urinate twice or more before changing it, so it must just be me. It’s frustrating, but thankfully right now I’m only urinating 2-3 times a day, so I’m not needing a million changes. And, if I do have to go a second time before my husband can change me, I simply rely on the bed pad to catch the overflow so we don’t have to change sheets.

      The worst part for me, honestly, is bowel movements. Not to share TMI, but I had one almost two hours ago (no control – it just came out), and have had to sit in it this whole time, since hubby can’t get here on lunch break for another half hour or so. This is the part that gets frustrating. It almost makes me feel inhuman. But it is what it is, I guess.

      Thanks so much for the encouragement and relating to my experience. It’s good to hear it does get at least a little bit easier down the road. Appreciate the comment!

      • Not happy you have the same problem. For me it leaks at the second pee and this while I have an extra pad in my diaper. No one understands why it leaks so quickly. Like you I’m also on my back 24/7, so yes it all flows down your buttocks.

        I hate it when bowels empty and my mom isn’t home (I have to live with my parents, my partner left me in 2004, he couldn’t handle it anymore to see me so ill). It smells, it itches, it’s just ieeuwww. The first couple of times it happened and my partner, later on my mom, had to clean me I cried, I felt like a baby, it was awful. I still don’t like it and feels humiliating, but it’s easier now then back then. I’ve asked my GP several times for a bladder catheter and also one for my bowels (don’t know the English word for it), but he rejects each time. I just can’t get him believe that the changes are just way too exhausting and painful. It sucks not being believed. But he also refuses tube feeding and oxygen. He says that it will make my body even more lazy and then my body will never ever eat, breath, pee and poo by itself again (sorry, don’t know the fancy words in English). I have a new GP now and hope he will agree some day.

        I hope your husband got home in the mean time and that you’re clean again.

        Hugs

      • Thanks! Sorry to hear you have the same problem with leaking. You’d think someone would be smart enough to design an adult diaper specifically for people who are bedbound on their backs all the time (ie one with most of the padding in the butt area – with a better seal around the upper back thighs to prevent excess urine from running out that way before it can be absorbed). My hospice team also suggested inserting an extra pad, but since it would go in the crotch area, I figured it wouldn’t do much good anyway. From your experience, it sounds like I’m right. Oh well, we make do the best we can.

        I definitely hate feeling like a baby while being cleaned. My husband is really pretty good at not commenting on the smell or how gross it is, so that helps a lot. I cried while waiting for him to get home, though. It just felt so humiliating laying here in my own feces (poo). But I got over it, and now hubby has come and gone and I feel much more human again.

        I also considered a catheter. The reason I decided against it is that ME patients are extra prone to infections from prolonged use of catheters, and that’s just plain dangerous for us. I also considered a female urinal, but there’s absolutely no way I could hold one in place myself (plus it wouldn’t take care of the bowel incontinence issues). So while being changed hurts, is embarrassing, and uses up loads of energy, it’s really our best option for now.

        I hope you are able to get whatever is best for you from your new GP. Starting with a new doctor can be so nerve wracking for those of us who have faced the ignorance and sometimes outright prejudice of uneducated doctors. Hopefully your new doctor will be everything you need! Hugs!

      • Thank God for feeling human again!

        Well the extra pad helps in such a way that without it it would leak at the first go. Trouble with extra pad though is that it causes pressure sores on your buttocks. But I do have to wear them at night, because I’m not allowed to call my mom in the middle of the night for a diaper change and the bed padding can’t always keep my bed from getting wet. I mostly have to pee at least 3 times at night.

        I use Bepanthen to prevent bed and pressure sores as much as possible. It really helps underneath my breasts. The skin was always open there, but since using Bepanthen only very rarely. Maybe a tip for you and/or others reading here.

        I have used a female urinal for 6 years, before finally getting diapers approved from GP. In the beginning I could do it myself, but later on my partner had to do it for me and push my bladder so I could get it out. At some point he had to do this day and night. ‘Luckily’ he didn’t had a job and so was always home to care for me otherwise I had to go live in a nursing home at age 27. That is if they agreed to admitting me, which they didn’t as he left me, that’s why I’m at my parents.
        It was only in 2005 as my mom had to take care of me and do this day and night that I finally got diapers.

        It’s nice talking to you. Hugs

  4. Such an important issue and one that is all too rarely discussed. At the age of twenty-three I went from working to bedridden in the space of three weeks so had no time to adjust mentally to my sudden loss of abilities. The male social worker sent to assess me was an inexperienced twenty-two year old and I was so embarassed about discussing incontinance/toileting issues with a goodlooking guy my own age (especially knowing he hadn’t encountered other patients with severe ME before) that I didn’t raise any intimate personal-care issues with him and ended up losing out on much needed care as a result. Had I known at the time that this degree of debilitation is common among patients with ME and not something to be ashamed of I might have had more confidence to broach the subject and ask for the help I so desparately needed. The first advice I give to any one now expecting their first social care assessment is to be brutally honest no matter how undignified or embarassing it may be.

    I live alone and only have care during the day so there were many nights I lay in a soiled pad for several hours before carers arrived to change it. Of all the indignities of this illness, that was one of the worst and one of the first that comes to mind whenever people try to dismiss ME as tiredness. What self-respecting twenty-three year old would lie all night in a soiled bed and deal with nappy-rash and bedsores simply because they were tired?

    It’s an issue that is so difficult to talk about but so vitally important in helping other sufferers know they are not alone. Thank you for having the courage to share your story and help shine a light on the hidden realities of living with chronic illness.

    • “Of all the indignities of this illness, that was one of the worst and one of the first that comes to mind whenever people try to dismiss ME as tiredness. What self-respecting twenty-three year old would lie all night in a soiled bed and deal with nappy-rash and bedsores simply because they were tired?”

      I think that says it all. I’m so sorry you have had to experience this so much as well. It is incredibly challenging, emotionally, to maintain a sense of dignity while laying in your own mess for hours on end. And I don’t blame you for holding back with the young male social worker. It’s hard enough for me to discuss this issue openly with my care team, even with all of us knowing it’s a common part of this illness! Yet, as you said, brutal honesty is so important if we are to stand any chance of getting the help we need.

      Thank you for sharing your experience here. I know it’s never completely easy to do with a subject like this, but I really believe people reading comments like yours will benefit from them in the end. Thank you!

  5. I applaud your courage at describing some of the difficult symptoms and coping strategies that go with living with M.E. I’m in another phase with my family where they are vehemently telling me and my husband that we don’t have an illness and that we are making it up. We have had 2 people live with us for a bit in the last year and they were shocked at how debilitating the illness really is – this was helpful because it was validation that we rarely get from family or doctors.

    I’m so glad your husband is a loving caregiver. What a gift that is, is it not? Those partners who have to live the ‘in sickness’ part of the vows for long, maybe perpetual periods perhaps need a medal of honor.

    My hubs, for years, would say ‘Babe I would take your pain in an instant if I could’ and I would say ‘No, no I wouldn’t wish this on my worst enemy. But then 9 years into the marriage he was diagnosed with it too and watching him suffer from this illness that is barely recognized has been excruciating.

    Give Lawrence a big hug of thanks from me and I’m reaching over to my sleeping Walter and gently squeezing his shoulder. Love sure does help.

    • Hello! Thanks for the encouragement, and for sharing some of your experiences. I’m so sorry to hear your husband also came down with ME. That must be incredibly difficult! I don’t know what we’d do if my husband became seriously ill. I agree, carers definitely deserve some sort of award for the way they live their lives taking care of us.

      Thanks again for taking the time to comment. I hope you and your dear hubby have the best weekend possible!

  6. This has been one of my fears as well, ever since I had to use a bedside comode while in the hospital. Actually the last time I was in the ER, they tried to make me use it, and I said no, I wanted to go down the hall in a wheelchair like everyone else. She said, “Really?” as in, seriously, you want me to go find a wheelchair when you could just use that right there? and I said, Yes, just let me have my dignity! :\ She didn’t know that one day that will probably be my only option, and I want to “enjoy” a normal restroom for as long as possible.

    I’m not sure where the idea that we shouldn’t feel embarassed about it at first, ever came from… It’s not completely the act itself that is humiliating, but what it signifies. I can only hope when that time comes for me I will deal with it as gracefully as yourself, and maybe I’ll have someone who loves me that much, to want to help, and not be at the mercy of a cruel carer or facility. Lawrence is amazing, and you’re amazing, and thank you for writing what I know so many more are going through. (I’m also astounded and very happy for the wonderful responses you’ve already gotten. ♥)

    xo Kit

    • Aww, thanks, Kit! I too have been amazed at the wonderful responses I’ve gotten to this post. So many people have been open about suffering in similar circumstances. It really is amazing, and it’s helped me feel a little less alone in this. It’s one thing to know in your mind that other ME patients frequently go through this. It’s another to actually hear from those people themselves.

      I hope you never have to stop using regular restrooms. It really is a privilege most people never appreciate until they lose it. However, knowing you, I am sure you will handle whatever this illness throws at you with dignity and insight. We all get broken and/or fall apart sometimes, but something inside keeps us from being completely destroyed by this illness. Friendships like yours always help, too.

      Thank you for taking the time to read and comment here. I hope your week goes as smoothly as possible! Hugs!

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