The next phase

  • Hi I've never written anything before but hope there is someone out there that can help me/ease my fears.
    I've had ME/CFS for nearly ten years, gradually getting worse over the years. At the moment I'm finding I can do next to nothing, the need to lie down is so intense. Most of my time is in bed feeling like I'm paralysed. My question is if you are bedridden now, how did you make that transition? What are some good tips? I dont have anyone to look after me (atm I can make it to the kitchen and heat up some soup) and i have a doctor with no interest in learning about ME.

  • @sez Hi Sez. I’m so sorry to hear you are having such a difficult time at the moment. I’m not bedridden and I’m sure others who are will respond but maybe a consult with the Emerge Telehealth Nurse might be a good start? And they might be able to provide you with other medical practitioners in your area who will support you. Not much I’m sorry but maybe a starting place for you.

  • Hi @sez, I can relate to ME presenting with extreme symptoms that fluctuate. I have found that sometimes PEM can extend beyond a few hours, days, weeks and set in for a long haul. I have become bed ridden and practically totally dependent several times, throughout my journey. A few months ago, I had a complete body shutdown and was totally reliant on others to care for me. I am fortunate to have a carer, but this wasn't always the case and it was just the most horrible existence trying to do for yourself, to care for your own needs and well being, whilst bedridden. It is clearly obvious that anyone in this situation or suffering to this extent needs care, whether they come out of it to a more manageable existence or not. Reaching out to your wider community, especially the hospital health services may be a good start as they can direct you to community care services that you may be able to access. I have always found my medical file to be the best tool for mapping my illness and the stages I have been through, along with the extremity of symptoms. As far as tips for this living with ME whilst bedridden, bunker down with the things you need at arms length, consider pre-cooked meal deliveries or freezer options and try to see if there are any meal supports in your area. Consider a GP home visit if available as they will be able to see your condition and symptoms in real time and can document as such, and treat you as well. You may get referrals to outside support this way and a GP willing to support you towards getting the right care for you. I hope I haven't sounded too pushy in my response, but it frustrates me knowing that there are bedridden people trying to cope with this on their own. I wish you all the best and hope you find the strength to get the support you need and a clearer path forward. 🤓

  • @sez said in The next phase:

    What are some good tips?

    This may seem like some weird advice but here it goes...

    It relates to my own experience during the worst of the symptoms, although they are still 'hanging around' I don't currently feel that inescapable drag downward where I'm forced to sleep "now".

    I've been following Dr. Nancy Klimas' research (Nova research lab, Florida, US). One thing she advised was Ubiqinol. I found taking 150mg/day takes the edge off that 'driving fatigue' where you eventually find yourself having to lie down and rest.. and that's Ubiquinol, not Ubiqunon.

    I found sleeping during the day just didn't help, and contributed to the insomnia problem. My body seemed to get sleep-hungry, and what was worse, I started to gain weight, even though I eat very healthily.

    Lately I found practicing relaxation techniques (approx. 20mins throughout the day, especially when the fatigue starts to hit) tends to act like a reset.
    The relaxation techniques are from Jon Kabat-Zinn's "full body scan" technique. He teaches a religion-neutral, scientific approach to 'meditation' for the sake of pain management.

    Most people are likely to roil their eyes at the suggestion of meditation, with the stereo-typical incense burning, legs folded and fingers pinched (~OM~). 😉
    I usually just lie down on the bed for about 20mins at a time. The aim is NOT to fall asleep.

    Each person's ME/CFS/FM is unique with their own experiences. Mine feels like a gradual all-over body tension build up over time which is coupled with a growing fatigue and brain fog that eventually forces me to stop what I'm doing and lie down. Trying to push past that eventually leads to muscle spasms/cramps... kind of like my body is slowly applying the hand brake (to use an automotive metaphor).

    Basically the meditation gives me a chance to switch off to the external and manually 'un-knot' myself. I find it usually buys me an hour or two or on a rare day maybe 4hrs before I need to repeat.

  • @crashdummy thank you so much for your reply it has helped hugely! You have also given me hope that this wont be forever.

  • @Long-Haul-Mono thank you, I think meditation will help me

  • Community Moderator

    Hi @sez, my brain is being a little uncooperative on coming up with specific tips at the moment but really appreciate this topic. Not easy to talk about the ‘what if’s’ and unfortunately not something I did a lot of in the early years which meant I didn’t do a lot of planning at times when it might have been easier to problem solve. Even though it sounds naff and trite talking about our fears really helps and often takes others putting it into words to understand what might be worrying us so thank you for adding this topic.

  • Hi Sez,
    What a horrible phase you are in. Really hoping that you find things you can do that mean symptoms start getting better instead of worse.

    What you describe reminds me of how I was at my very worst, when I was still in the work force and also had a little daughter, just starting school. I'd get home from work, fix her something to eat, plonk her in front of the TV and then lie down. Once down I couldn't move a muscle for ages.

    I had to leave work and go on the disability pension, and didn't really improve much until my daughter grew up enough to leave home.

    So when I read your post, my first thought is that the intense need to lie down MUST be obeyed. In fact it must be obeyed well before it becomes intense. The earlier you catch it, the less damage you are doing to yourself.
    That is what is true for me.

    It is TERRIBLY boring being bedridden sick. When I get to that point I can't even concentrate on a radio program. SO boring. So far, however, I have always been able to improve, so I am sending all my best wishes that the same will be true for you too.

    Even when you can't do anything else, you can still (just about) plan your next moves.
    You can work out what is the most important thing to do the next time you have enough energy to get upright.
    You have to triage everything.
    You have to break everything down into tiny, do-able steps.

    I bet you have been getting very good at these skills, even if you haven't been aware of them.

    Triage drinking water as first priority! If you are like me and keep getting dehydrated enough to feel even more fatigued, and wilted and dead headed, you need to really focus on having a big drink of water every time you get up.

    Triage getting ahead with food. Hooray for having things that just need to be heated up. Extra points if they have lots of veggies in them. Gold medal if you can manage to do some bulk cooking (huge pot of soup) so you can stack your fridge and freezer).

    Triage avoiding things that will take even more time and effort to fix up later: like not paying a bill and then having to get your electricity reconnected.

    If you are lucky enough to have family of friends that can help, now is the time to call on them to do specific tasks: help please drop off a casserole, come and mow my back lawn, pick up the thingamijig from the whatchacallit.

    So gold medal for surviving the day 🎖 and good luck for using horizontal time to plan how best to use the next two minutes of vertical time.

    Best wishes and all good things.

  • @Long-Haul-Mono 100% agree. I meditate daily, similar to what you have spoken about and this is the only way I can get good deep rest and reset the clock a bit each day.

  • Hi @sez I'm also new here and have battled CFS for a similar period.

    Like others, I also use meditative techniques but when I get serious near paralytic crashes, I use parasympathetic release triggers. The easiest one in such a condition is to hold your eyes to the left or right for 20 or thirty seconds and just calm your mind. This will trigger a relaxation response which breaks the parasympathetic override. This can free you up enough to engage more active relaxation exercises such as slow deep breathing, yawning, and meditation.

    My understanding and experience of these crashes fits the idea of parasympathetic override. The body shuts itself down in a chronic trauma response as if to play dead. Normally the parasympathetic response is 'rest digest' while the sympathetic activation is 'fight flight'. In the traumatic 'freeze' response the parasympathetic overrides and locks down as if to 'seem' to be relaxed but is far from the case. Both sympathetic and parasympathetic are running full tilt which I believe is a fundamental cause of the fatigue.

    Once that shutdown state is released, the sympathetic system is allowed to reactivate and the body takes on a far more physical, and chaotic phase. It's important to let that physical release complete. After that your body can return naturally to an actual restorative rest state that is so desperately needs.

    Wishing you well

  • Community Moderator

    Hi @Darryl it must be such a relief to find something that is restorative and helps with paralytic crashes. Just adding a note of clarification from the moderators, as some people may not have come across these tools before. The techniques related to the activation of the parasympathetic nervous system provide tools that can be beneficial especially in the treatment of stress, anxiety and trauma because they trigger a calming response (though what’s calming for one person may not be the same for someone else). At this stage the supporting evidence refers to reductions in fatigue related to the regulation of the fight/flight/freeze responses rather than evidence of a specific treatment of ME/CFS. Though it is encouraging that more research is being done into so many different areas of health and well being. As with any treatment, where feasible, discuss with your treating doctor first.

  • @Long-Haul-Mono

    Do you take magnesium?
    I've been taking magnesium malate for years. That form is recommended for fibro myalgia sufferers.

    "Based on the current data 75 – 80% of our population is magnesium deficient and if you exercise intensely and eat a Standard Australia Diet then there is a 95% chance you are deficient."

    If apply the above to ME/CFS people, then it's pretty likely you are deficient.

  • @davoid I have tried Magnesium Citrate, Chloride (liquid form - yuk), and Glycinate. These were the only 3 I could find at local health food shops and other such places.
    I'd be interested to try Malate. Can you suggest where I could find it or brands I could look up?

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