What is happening ?

Dechi

Dechi

Senior Member (Voting Rights)
I’ve been preparing to move now for 4 months. And I’ve been doing renos for 10 days. I don’t do any physical work, or very little, but I go to the house everyday to make sure workers are okay and know what to do.

I also run errands so I don’t pay these guys to go shopping. I brought my exterior recliner chair to the house and I lay in it any time I can. I’ve had malaise on and off. Some days many times, some days not at all. I become out of breath and dizzy and I can’t stand anymore - I have to lie down. Anywhere, even on concrete floor if I have to. Then I rest about 45 minutes and I can go again.

The muscle weakness is worse. I can’t do anything steady for more than a few seconds before it hurts.

My anxiety levels are very high. There are delays, more money spent than expected and the feeling of urgency is exhausting. So I don’t sleep much. Maybe 4-5 hours.

I have never exhausted myself since ME. Am I in better shape than I think, or is crashing just around the corner ? It’s very strange. Why am I able to do so much when I had days where I couldn’t even get groceries just 2 weeks ago ?

If you have any insight, I’m a taker. This is a first for me.
 
Hi @Dechi I’ve been going through similar experience with my house I had some damp and floorboards and joist sorted in February and redecorating and new flooring March April. I’m in the process of sorting out all my stuff in my bedroom to clear it out so the room can be refurbed while I’m away visiting friends in 6 weeks time. I have mild/moderate symptoms so I look after myself and can get out sometimes.

I find that when I have work booked I literally push through to get whatever preparations are needed done. It sounds like this is what is making you do all this stuff that you weren’t doing before. I don’t think there is much of an alternative as I don’t have people I can ask to do this for me it would take a lot of hassle and cost to get someone in and I would still have to do the thinking and direct them. I have to get this work done because I want to sell my house to move near to family next year I can’t stay here as the stairs are too steep and it is too far to see family more than once a month.
Is this move going to be a positive step for a better set up for you too? If so I’d say that’s why you’re pushing yourself- for long term benefit,

It sounds like you’re taking a good approach with breaks to lie down. That’s one good thing about working in my bedroom I can easily take a break when I need to. Can you get your food shopping delivered I find that incredibly helpful on saving energy.

Moving house is one of the top stressful life events unfortunately I don’t think there’s a way of avoiding that. I hope it goes well for you.
 
@NelliePledge thank you. Have you done this before and how did it turn out when it was over ? Did you just crash or with more rest you were okay ?

Yes, moving is extenuating. And so expensive ! Since I can’t do much, I am paying for people to pack my stuff, move me and unpack me. On top of everything else. It took me almost 3 years to decide to move. The plan is for this to be my last house. It is smaller and will be a lot easier to maintain, at less cost. I couldn’t find a one story house that I liked so I bought one with stairs but I am having a chair lift installed.

Hopefully it turns out good for me. Right now I’m dealing with so many problems, mainly because of a not so honest seller who did not take good care of her house and tried to hide it with badly done renos.

I hope you can sell your house fast. This is a stressful time too.
 
Dechi said:
I’ve been preparing to move now for 4 months. And I’ve been doing renos for 10 days. I don’t do any physical work, or very little, but I go to the house everyday to make sure workers are okay and know what to do.

I also run errands so I don’t pay these guys to go shopping. I brought my exterior recliner chair to the house and I lay in it any time I can. I’ve had malaise on and off. Some days many times, some days not at all. I become out of breath and dizzy and I can’t stand anymore - I have to lie down. Anywhere, even on concrete floor if I have to. Then I rest about 45 minutes and I can go again.

The muscle weakness is worse. I can’t do anything steady for more than a few seconds before it hurts.

My anxiety levels are very high. There are delays, more money spent than expected and the feeling of urgency is exhausting. So I don’t sleep much. Maybe 4-5 hours.

I have never exhausted myself since ME. Am I in better shape than I think, or is crashing just around the corner ? It’s very strange. Why am I able to do so much when I had days where I couldn’t even get groceries just 2 weeks ago ?

If you have any insight, I’m a taker. This is a first for me.
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Get some more sleep, starting NOW. Nobody with ME should sleep <5 hours/day.

While doing stuff, set a timer and force yourself to be horizontal every [x interval], sooner after any activity that historically knocked you out. For me that's standing, heat, and several others.
Yeah, you might be having a miraculous improvement, but probably not. There is a rubber-band effect.
 
Dechi said:
@Sisyphus I wish I could sleep more, but the « tired but wired » effect is on full blast ! I will most definitely try to lie down as much as possible. The next 5-6 days will be the worse, then I will be able to rest like usual, or close.
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I agree with Sisyphus. Even though it may not seem immediately beneficial, resting as much as possible during it all will help with recovery after it is over.

Grab any opportunity you get to just lie down and close your eyes, even if just for a few minutes here and there. It all adds up.
 
Dechi said:
@NelliePledge thank you. Have you done this before and how did it turn out when it was over ? Did you just crash or with more rest you were okay ?

Yes, moving is extenuating. And so expensive ! Since I can’t do much, I am paying for people to pack my stuff, move me and unpack me. On top of everything else. It took me almost 3 years to decide to move. The plan is for this to be my last house. It is smaller and will be a lot easier to maintain, at less cost. I couldn’t find a one story house that I liked so I bought one with stairs but I am having a chair lift installed.

Hopefully it turns out good for me. Right now I’m dealing with so many problems, mainly because of a not so honest seller who did not take good care of her house and tried to hide it with badly done renos.

I hope you can sell your house fast. This is a stressful time too.
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i did have a mini move experience as nearly all my furniture and stuff from downstairs was moved out for a few months while the work happened. Like you I had removal men packing everything up. but as my insurance company decided it wasnt their liability and I had to pay for the final month storage myself when the stuff came back I had to unpack. which took me 2 weeks doing 4 boxes a day. I didnt have a big flare up of symptoms when I finished - luckily for me I was booked for a 3 day spa break where i did very little and had a gentle massage, scalp massage and some time in jacuzzi etc. and then after that I did have a week where I had very low energy slept and rested and did virtually nothing. but I wasnt having worse pain or flu/sore throats which I do in a flare up.
unfortunately with renovations it seems like there's always extra expenses or things that arent quite done to the standard you'd like. but after living in a half empty home wiht work going on around me for a few months I can say this summer Im a lot happier than I was during the winter. I learned quite a lot that I can bring to when Im looking for somewhere to buy next year and I will definitely also be looking for my last home that must be accessible or capable of being made accessible with a stair lift. downstairs loo, manageable outdoor space etc. luckily this house is in an area that is popular with younger folk , very near to our new tram line so it will either sell to first time buyers or a landlord.

Its not surprising you're getting tired but wired, I have poor sleep, low dose melatonin helps me with getting off but not so effective with tired but wired. I think I need to be using something else when wired. As long as you're doing the pacing with rest breaks you're doing as much as you can to mitigate. I hope the move in goes well and you can get some full on rest and recuperation afterwards.
 
Dechi said:
@Sisyphus I wish I could sleep more, but the « tired but wired » effect is on full blast ! I will most definitely try to lie down as much as possible. The next 5-6 days will be the worse, then I will be able to rest like usual, or close.

@Esther12 thank you ! :)
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Tired but wired is one of the more nightmare aspects of this disease. It is also a warning light on your dashboard; when that happens things are near an equipment damage point, at least the that’s my N=1 iota of experience.

That and about 30 other things should probably be in a set of diagnostic criteria. It seems we have a couple of essential elements, and then a shifting miasma of symptoms which come and go and which are not common to all of us.
 
@Sisyphus 3 more days before I can start resting again. Let’s hope I come out of this not too damaged.

I have sort of dizzy spells on and off. Today I had at least three or four. In one of them I was driving, and seriously considering stopping by the side of the road. Fortunately I only had 2-3 minutes to go.

Funny when I stop is when I feel worse. When I sit down to relax, or lay down. Or when I am not walking, just standing up.
 
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