Being moderately-severely ill with ME/CFS, I can leave the house once or twice a week, and see a friend once every couple of weeks, without worsening my symptoms long term. I have worsened symptoms in the short term.
There are weeks when it takes a couple of days to recover from an outing to an acceptable state where I can start doing things again without crashing. Then there are weeks like this week where I don't have the opportunity to recover through rest before I have to get things done. I have to sort out food for myself. I have to DO something or I'll go insane. Sometimes I don't have the willpower to rest. I make myself worse by doing things. I know it will make me worse, but I do things to feel that I have achieved something.
I have a to-do list of things like: get insurance, sort out filing, research private healthcare. These things require brain power which I don't have most of the time. These things have been on my to-do list for months. I would really like to get them over and done with. There are important emails that I haven't even been able to read, sent months ago.
When I do have brain power, I reflect on my health - what I have learnt, what small change I could make. I also try to use brain power for planning food, and looking at my budgeting. But even on my best day, my ability to be strategic is not great. I make mistakes, I leave out things, I don't consider important things, I don't connect the dots. Connecting the dots was a big part of my career - it was something I was especially good at. Now, I can't recall the set of basic information I need and hold it in my mind enough to figure out how it works together. Planning for me now involves going over and over, looking at one little section at a time, because I can never hold the whole picture in my mind.
Recently I wrote a long letter with the aim of dealing with problems in a relationship, in response to the other person's letter. It took me 6 weeks to reply. I could only read a section at a time and respond to that section. When I'd read back what I'd written, I saw that I repeated myself A LOT and I mostly hadn't remembered that I'd already written those things. It took so much energy from me to write the letter that I didn't do other things like socialise.
I find that washing my hair is coming lower down the priority list, relative to leaving the house. This morning I had to make the decision whether to wash my hair or do some of that filing that's been hanging over me for months. Tomorrow I will make the decision whether I should wash my hair or leave the house to take a coat to a dry cleaner that smells.
I would like to have clean hair more of the time. I would like to have clean sheets more of the time. I would like a clean room more of the time. I hoover and dust about once every 3 months.
I have been waiting for a care assessment for 5 months. People who have severe toilet needs are more of a priority than me. I understand this. But 5 months is too long. I was told 6 weeks ago that it would take another 4 weeks. I need a Personal Assistant to help with emails and budgeting. I need someone to help me plan food - groceries and cooking. I need someone to clean my room. I think I need someone to clean my hair but I'm not sure how I feel about it.
I'm scared that having people helping me will make me worse. Social contact makes me worse when it's for too long or if it's stressful.
I have a lot of friends that are offering me help, but the problem is that it comes with obligation to socialise, and I want to see them. However, when I accept help and also socialise on the same day, it's a recipe for a crash - it's too much social contact time. I put this to the test recently - someone cleaned my room and then we went out for tea. It was 4 hours of not being in bed. That contributed to me being housebound for 11 days.
The other day, on a Saturday, I planned an online grocery shop, and had thought about 2 recipes that I could cook for dinners. This took me 3 sittings to work out, leaving out the several times I went back to change my order when I remembered something important. I looked at what I had in the house already, and planned it to be delivered on a Wednesday. By Monday night I realised I didn't have any protein or fruit. I was feeling hungry. When I don't have enough protein my symptoms seem to get worse - I get more fatigued, more brain foggy, more achey, more teary. I asked my housemates on WhatsApp if they could pick up a couple of things for me. They ignored me apart from one who apologised later for not seeing the text. I asked a friend who went out of her way to come to my rescue. She went overboard and got me much more than I asked for as a gift, which made me feel guilty because I know she's not feeling flush right now. I was in a state from my worsened symptoms and didn't deal with the situation very well, but thankfully she understood.
The point is that even in good moments, I still make decisions that leave me in somewhat desperate situations - unable to leave the house to look after myself and being totally reliant on the generosity of others.
I'm really struggling to be strategic about how often I socialise. I do it for too long then crash then when I'm able to socialise again, I'm so starved of company that I don't want to leave. So I end up boom and busting. I need to do less, more frequently. But to get to that point I just need to do less and rest. Yet, I'm fed up of being like this.
I'm fed up of my mental health being worse because I can't socialise enough. I'm fed up of getting more anxious after socialising because I have worsened symptoms from doing something. Worsened ME/CFS symptoms directly impact my mental health. I can't win. Socialise too much and I get more ill. Don't socialise enough and I get physically better but mentally worse and then I don't make great decisions for myself because of that. I'm not well enough to socialise enough to stay sane. This situation is impossible.
I want to start getting better please!! My patience is long but I need to see some signs of improvement soon. It's taking me months to get back to my level of functionality before Christmas. Now I know that simply believing I'm well enough to do lots of things is not enough - I did a few weeks of more activity then got much worse. I felt that I was pushing through.
What works for me is not doing activity when I feel that I'm pushing. Getting into the right mindset to obey this rule counts for a lot. I'm not good at obeying this rule at the moment - this week I've been giving in too much to my desire to get things done. It's a huge relief to have got a couple of things done, but it means that I have also ended up pushing myself to do more than I needed to do, like drawing and taking on cooking before I was quite ready. I find it difficult to think of alternative easier ways of doing things.
As you can see this writing is unstructured, all over the place, stream of consciousness. I want to record how things are right now. I hope that in time I can look back and remember how s*** it was and be grateful for what I have. I hope that I don't get worse and have to look on now as a time where I didn't realise how good I had it. At least I can get something done once in a while, and socialise every couple of weeks. At least my pain symptoms barely go above 'achey' and 'uncomfortable'.
There are weeks when it takes a couple of days to recover from an outing to an acceptable state where I can start doing things again without crashing. Then there are weeks like this week where I don't have the opportunity to recover through rest before I have to get things done. I have to sort out food for myself. I have to DO something or I'll go insane. Sometimes I don't have the willpower to rest. I make myself worse by doing things. I know it will make me worse, but I do things to feel that I have achieved something.
I have a to-do list of things like: get insurance, sort out filing, research private healthcare. These things require brain power which I don't have most of the time. These things have been on my to-do list for months. I would really like to get them over and done with. There are important emails that I haven't even been able to read, sent months ago.
When I do have brain power, I reflect on my health - what I have learnt, what small change I could make. I also try to use brain power for planning food, and looking at my budgeting. But even on my best day, my ability to be strategic is not great. I make mistakes, I leave out things, I don't consider important things, I don't connect the dots. Connecting the dots was a big part of my career - it was something I was especially good at. Now, I can't recall the set of basic information I need and hold it in my mind enough to figure out how it works together. Planning for me now involves going over and over, looking at one little section at a time, because I can never hold the whole picture in my mind.
Recently I wrote a long letter with the aim of dealing with problems in a relationship, in response to the other person's letter. It took me 6 weeks to reply. I could only read a section at a time and respond to that section. When I'd read back what I'd written, I saw that I repeated myself A LOT and I mostly hadn't remembered that I'd already written those things. It took so much energy from me to write the letter that I didn't do other things like socialise.
I find that washing my hair is coming lower down the priority list, relative to leaving the house. This morning I had to make the decision whether to wash my hair or do some of that filing that's been hanging over me for months. Tomorrow I will make the decision whether I should wash my hair or leave the house to take a coat to a dry cleaner that smells.
I would like to have clean hair more of the time. I would like to have clean sheets more of the time. I would like a clean room more of the time. I hoover and dust about once every 3 months.
I have been waiting for a care assessment for 5 months. People who have severe toilet needs are more of a priority than me. I understand this. But 5 months is too long. I was told 6 weeks ago that it would take another 4 weeks. I need a Personal Assistant to help with emails and budgeting. I need someone to help me plan food - groceries and cooking. I need someone to clean my room. I think I need someone to clean my hair but I'm not sure how I feel about it.
I'm scared that having people helping me will make me worse. Social contact makes me worse when it's for too long or if it's stressful.
I have a lot of friends that are offering me help, but the problem is that it comes with obligation to socialise, and I want to see them. However, when I accept help and also socialise on the same day, it's a recipe for a crash - it's too much social contact time. I put this to the test recently - someone cleaned my room and then we went out for tea. It was 4 hours of not being in bed. That contributed to me being housebound for 11 days.
The other day, on a Saturday, I planned an online grocery shop, and had thought about 2 recipes that I could cook for dinners. This took me 3 sittings to work out, leaving out the several times I went back to change my order when I remembered something important. I looked at what I had in the house already, and planned it to be delivered on a Wednesday. By Monday night I realised I didn't have any protein or fruit. I was feeling hungry. When I don't have enough protein my symptoms seem to get worse - I get more fatigued, more brain foggy, more achey, more teary. I asked my housemates on WhatsApp if they could pick up a couple of things for me. They ignored me apart from one who apologised later for not seeing the text. I asked a friend who went out of her way to come to my rescue. She went overboard and got me much more than I asked for as a gift, which made me feel guilty because I know she's not feeling flush right now. I was in a state from my worsened symptoms and didn't deal with the situation very well, but thankfully she understood.
The point is that even in good moments, I still make decisions that leave me in somewhat desperate situations - unable to leave the house to look after myself and being totally reliant on the generosity of others.
I'm really struggling to be strategic about how often I socialise. I do it for too long then crash then when I'm able to socialise again, I'm so starved of company that I don't want to leave. So I end up boom and busting. I need to do less, more frequently. But to get to that point I just need to do less and rest. Yet, I'm fed up of being like this.
I'm fed up of my mental health being worse because I can't socialise enough. I'm fed up of getting more anxious after socialising because I have worsened symptoms from doing something. Worsened ME/CFS symptoms directly impact my mental health. I can't win. Socialise too much and I get more ill. Don't socialise enough and I get physically better but mentally worse and then I don't make great decisions for myself because of that. I'm not well enough to socialise enough to stay sane. This situation is impossible.
I want to start getting better please!! My patience is long but I need to see some signs of improvement soon. It's taking me months to get back to my level of functionality before Christmas. Now I know that simply believing I'm well enough to do lots of things is not enough - I did a few weeks of more activity then got much worse. I felt that I was pushing through.
What works for me is not doing activity when I feel that I'm pushing. Getting into the right mindset to obey this rule counts for a lot. I'm not good at obeying this rule at the moment - this week I've been giving in too much to my desire to get things done. It's a huge relief to have got a couple of things done, but it means that I have also ended up pushing myself to do more than I needed to do, like drawing and taking on cooking before I was quite ready. I find it difficult to think of alternative easier ways of doing things.
As you can see this writing is unstructured, all over the place, stream of consciousness. I want to record how things are right now. I hope that in time I can look back and remember how s*** it was and be grateful for what I have. I hope that I don't get worse and have to look on now as a time where I didn't realise how good I had it. At least I can get something done once in a while, and socialise every couple of weeks. At least my pain symptoms barely go above 'achey' and 'uncomfortable'.
