Am I worse than I want to admit and need to change?

[Willhm]

Hello, (Sorry that this is so long),

I have had ME/CFS for over 4 years since I was 14. At first I pretty much bed bound/sofa bound with some movement around the house. Over time I managed to start going out and at my peak about 3 and a half years ago I was in school part time, went out with friends during the day on Saturday. Since then I had a bit of crash were I pulled out of school and stayed at home, just going out when I dad drove me generally, which could sometimes be quite far, this was about 2 and 3/4 years ago. After a few months I ended up going to school every couple of days or so for an hour and as far as I remember that was pretty much all I was doing, maybe occasionally seeing friends and I think I did walk home from school (about 20 mins). After the school year ended almost two years ago and the next one started I pulled out after about 2 months of going in very part time and I don't think I hardly ever saw friends so I don't thi k I was really going out except when my dad drove me. A couple of months after that I started to develop very bad stomach problems which have been my worse symptom since, this was about Late December/Early January 2011/2012. Since then I have gone from being taken around in the car and walking with my dad and/or mum where ever we went, but not for too long, maybe 30/40 mins, this could be to a place for a walk like a nice area like a field, woods etc or just to the supermarket to get food. But since then my stomach has meant I don't really ever leave the house, at the time I was going out I was doing more but when I crashed with my stomach my symptoms were much worse but now they are more debilitating in terms of I can't walk as much or go out in the car hardly but they are a bit more manageable in the sense when it is bad it isn't quite so severe and my generally nausea isn't as bad, but still very unplesant. I am beginning to notice that just walking around the house or trying to prepare some food or even concentrate on something I feel much worse and my stomach and general nausea amd GI problems are worse which is the overriding worse symptom. Of course I get very tired etc too. So more I more I am realising I think to feel better I need to revert to a bit more like the early days of bed/sofa and requiring more help but it seems odd that I peaked and then got so much worse, or has that happened to any of you? I want to tell my parents that I think I need to be much much more in an almost constant resting state and need more help but I don't know how to say it because it seems like I have just been sliding down for so long and I don't want them to think I am giving up but I would rather feel a bit better and resting in bed each day than trying to do things around the house and feeling unwell. I realise I have written a lot, I am just in a tough situation I think. Any ideas?

 

[SickOfSickness]

It happens to many. Sometimes with ME/CFS we go into remission and feel very good, then it comes back. Usually it comes back worse. It is smart to rest as much as you can stand. Like you said, to do a little less physically so you can feel better. Most people with ME/CFS don't realize for years. They are active people and start to feel run down and keep pushing themselves, because they can't accept the idea of doing less. It takes time to accept and understand what is happening and that rest in the short-term helps us not be worse long-term. Even after many years, some of us struggle with balancing how much we do. So it is not easy. Do what you can to take care of yourself.

 

[Willhm]

My Mum and Dad are out at this moment but will be back shortly. Do you mind if I show them you post as it might make them understand a bit as it is coming from a fellow ME/CFS sufferer, they are extremely understanding and helpful but this is a bit of a step and a change so it might be useful. If anyone else also has any ideas or has had similar experiences then please share.

 

[Valentijn]

It's hard to find a balance of what you can do, and what you shouldn't do. The tendency of most of us is to push ourselves too hard, until we crash too many times and eventually get the message.

Something I've found helpful in determining what I can handle is a heart rate monitor (I like a finger pulse oximeter because it's easy and quick to use). If my heart rate can stay under 90 while I'm relaxed and sitting with my feet up, then I'm pretty safe to attempt easy or essential activities (cooking, bathing). If it's under 85, then I might do something a little more intense, like a "walk" around the neighborhood on my mobility scooter or a trip to the store.

But if I'm over 90 when resting, I have to be very careful about what I do. If I do too much, while my heart rate is already too fast, it can take days for my heart rate to go back down, and I might have a post-exertional malaise crash as well. If my heart rate does go down while having one of these episodes, my oxygen also goes down - then heart rate rises to compensate. So the elevated heart rate seems to be compensating for some other mechanism which fails to maintain adequate oxygen levels after exertion.

I have no idea why this happens, but at least I have a guide now for when I shouldn't be doing anything, and for when I can afford to do a bit more. Your limits are probably somewhat different (maybe you can handle a real walk when you're doing better), but the general concept of limiting your activities based on heart rate is probably applicable.