looking at your post, I dont think are crashing for no reason at all. Added stress will wear one down and cause a need to be resting more. From what I can see, you are pushing yourself too much during the week, getting up to get kids ready for school etc etc which then acculminates in a crash by the weekend. So u are in a push/crash weekly cycle.
7hrs sleep is okay for a healthy person but those with ME/CFS need more sleep (ones body does a lot of its healing when someone is asleep). I personally need 9hrs (or more if im worst). Before I was sick I was good on 6-7 hrs.
I suggest that u do need to change some things or otherwise u may permanently find yourself at a worst baseline, from your post I had that isnt what has just happened. ont believe u were continue being okay with pushing yourself and not listening to your bodies needs (forcing ones body up before it is ready to be getting up is a huge strain on it each time, whether u later come good or not). Learn to listen to what your body needs and go with your body.
. eg get the kids doing some of the meals doing the week days (I suggest to give each one a night of the week in which its their cooking night, its good for their learning too and they will get the hang of doing family meals after a while).. and get more sleep. My children were expected to be silently doing things in their rooms if I needed more sleep. The sleep thing may be essential to your health.
As you are in the UK your doctor may be in fact trying to help u by not giving u a ME/CFS diagnoses, many there are treated badly after being given that diagnoses. U may need to seek out a good ME/CFS specialist which others with symptoms the same as yours recommend eg Dr Sarah Myhill.
As long as your doctor isnt doing exactly the same tests multiple times over, testing is useful. A tilt table test may be useful and now would be a good time to see if u can be refered for that. You could also do poor mans testing for POTS at home to see if you have this causing your symptoms. (i had to diagnose myself and then find a doctor to diagnose me).
Much of what u said fits POTS (and that can make u feel crap in morning when u first wake up till u hydrate better. Many POTS patients need to prepare their bodies for getting up before they get up
Thank you so much Tania
I am waking daily feeling rubbish, there's never a day I wake feeling well. I say a crash is a 10/10 in severity but my regular days are a 7 some times an 8. So I'm never far away from a crash. Every day I wake feeling weak in my legs from the moment I stand, a weak lethargic feeling all through my body. Most mornings I force myself into the shower on waking before the children are up bur on bad days I wait until evening. Then there are some days I also wake with the sedated drugged up head feelinf recently on top of the weak drained body.
I then get the kids fed and up for school. I've stopped driving them as it was too much and they all walk, they re all high school age. I did feel guilty but I don't anymore. Lol! By not driving them though I rarely get out. I've not been out for 3 weeks!! Not even for a drive. I've sat in the garden the odd day but recently even a drive as a passenger can cause me to crash. Being in this situation the last 19 months I admit has led to bad agoraphobia and social anxiety. It's awful.
My chikdren cooking is a fab idea. I also thought maybe sandwich night would be food. I could get good fillings in and they can all make their own sandwiches and have some fruit or crisps or something on the side.
I am doing way too much but i feel I can't shorten my lost any further. Hubby Hoover's the house and mops 3x a week for me. He loads the dishwasher at night and unloads it before work the next day. Be walks the dogs. I already feel such a useless wife and mum and I cry most days. It's made me very depressed this whole situation. In a day I wake at 7, shower, make breakfast, sit and eat my food. Then see the children off, tidy the kitchen, put a wash in the machine, go uosators and make the needs and spray and wipe the toilet and sink. I then sit and rest till lunch. Make lunch and then rest fill 3pm. I then cook their meals and tidy up the plate and kitchen. I usually then get myself in my pjs and relax for the night. I find all of that very difficult. My fitbit says I do about 3-4k steps a day.
My gp last yesr did 2 full blood counts, b12, folate,ferritin, hba1c, glucose, crp, glandular fever, nuclear antibodies, cholesterol, thyroid, liver and Kidney function tests..... there may have been more. All ok other than once my glucose was a little high so he has made an do 2 hba1cs sinxe and both are fine at 34. Sodium in November came back a little low so we repeated it a week later and it was completely fine yet eveeytime we speak he makes me repeat it again and it's fine but he panics and it's the one tests he makes me do over and over plus the hba1c. Yet he never ever has told me what's wrong with me. He said the November tests would be definitive bur will no diagnosis. He visit me a fair few times laat year and would see me in a crash and blame.depression or mood. Once he told my hubby it was a virus. I had to make him see my thyroid was out of range and eventually he treated it. It's now in range so he dismisses it could cause any issues now I'm on thyroxine.
My go rang me in January 10 weeks after the last full sweep of bloods and he said he was noe worried it wasn't just mood and he wanted to run all the same bloods he had 10 weeks earlier. I refused and said they were fine and all of this was causing me anxoety and id developed a real phobia of blood tests by this point. He made me do another full blood count etc and the fbc came back with my lymphocytes slightly our of range and neutrophils slightly low. He panicked me and referred me to a haemotologist. The haemotologist wrote back and said he just wanted to wait 10 weeks and get my go to repeat it and send it to him so he could look at it himself. I stupidly googled my 2 out of range and saw leaukemia and cancer raise lymphocytes which terrified me. At the time of the test id had an awful cystic acne outbreak all over my chin and had raised glands. My gp dismissed that as a cause.
My gp left kast week and I've been handed over to a new female gp..i am hoping she will diagnose me as the last go said he didn't want to as cfs is just a diagnosis of exclusion but 3 times kaay year he admitted my pattern of crashing did match cfs burbhe doesn't lile to diagnose it as it's not in his eyes a true illness. He even told my husband recently he thinks I'm just depressed but my husband disagreed and told him I'm only depressed due to this ill health, the anxiety of never being diagnosed and the agoraphobia ansld social anxiety it's causes.
I have cut the world our this laat 6 months. Refused any gp visits and would only talk over the phone.. My gp has raised my anxiety so much and I just went into hiding from him I guess but now with this haemotologist thing hanging over me I'm terrified if I have cancer is it my fault for cutting the world out this yesr so far. My husband says not as I saw my go so many times last year and did all the tests he wanted.
I feel craahes rule my life. Theyve also added to my fesr of seeing peoole becayse laat year everytime i had visitors i'd crash for days so I've refused visitors this yesr so far. I'm scared to even go to the park with my children as that usually results in a crash. If I have blood tests to do I am scared to go out for a week before incase I crash and can't do them. The crashes rule my life. Last year I did things anyway and I even still did our weeks caravan holiday but this yesr it's all worse and we had to cancel our holiday we should have been going on yesterday. I feel I've let all my family down but this yesr so far thing are worse I used to have good days last year now every day is hard. I used to crash maybe once a month or 6 weeks. And now I crash twice a month.
All of this has led to so much stress and my corrisol levels are high. I was attacked by my brother 5 years ago and my mother and sisters resented me for never forgiving him and I was pushed out of the family for that reason. My mother has causes me so much pain rejecting me. She is aware I'm ill and I even hot the guts to ask her for support last year and she refused. She would visit once every 2 months to see the kids, see me ill but offer no support. It led to severe rejection and re triggered my ptsd. So that stress has been veey upsetting too and it's hard having no support.
I apologise this got so long. I am really sorry. It's all been bottled up inside me and I'm a worried little mess.
Thank you for your kind reply.
Julie
Ps yes I am in the UK.