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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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How ME/CFS currently affects my life

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'.


@lior I really feel for you and what's going on. This is so hard and unfair isn't it? The tricky thing is finding that perfect balance which is so hard to do!
And "perfect balances" often don't fit in very well with everyday ordinary life!

I know it's so nice to go out, and you will go out many times I'm sure. But it would maybe be nice if when friends visit you host some socialising in your room....from your bed!
(Nothing quite like crumbs in bed! :rofl::meh:) And a nice bottle of wine...though drunk hopefully, and not spilled in bed! :eek::eek:
You could make yourself a bit glam and wear a lovely dressing gown or something and it would be a nice way to socialise.
But the difficult thing with all this is when you start to reach that point where you know it's enough.....and then having to let them know, and needing them to leave....that is not easy unless they are 100% understanding.

One of the things that's hard about this is it just does not fit in neatly with most peoples' normal lives and ways. I think that in itself can be a bit distressing.

Adapting to all these things can be so hard.

My kind thoughts to you as always :hug:
Hi @lior.
I’m sorry to hear of all you are struggling with. It is all very familiar to me. I think from reading your story, that you just need to keep learning to communicate your limits, and keep asking friends for help but explaining that it is too difficult to socialize during session.

Once you get an assistant / house aide, start off as you mean to go on. Maybe send all instructions in email and text to that person, letting them know that taking and social interaction isn’t possible. When my cleaning lady comes, I open the door for her and then go into our spare room that doesn’t get cleaned. I don’t see her again, she lets herself out.

Then with socializing, you will have only the socializing that day which will be easier than having a friend help and also to socialize. I am just very clear with people.. i can do 30 minute call, or maybe 40 mins to an hour out. And I limit trips out to either outdoor cafes, so no music, or empty restaurants!

As for emails and budgeting, could you ask a friend to help you over email?

Finally.. don’t beat yourself up or spend time feelingr guilty too much. I’m sure your friends understand and feel terrible they can’t help more.

Best of luck with everything..
Thanks for your wise and kind words.

Once you get an assistant / house aide, start off as you mean to go on.
I have been planning to do this. It's against my nature to not be welcoming and accommodating but I need to find a way to get out of hostess mode when I accept help.

I’m sure your friends understand and feel terrible they can’t help more.
I think you're right. I struggle to delegate in a clear way which has led to problems in the past, so I stopped asking for help unless I could be clear about it. I'm still trying to get more clear in what I ask for.

One of the things that's hard about this is it just does not fit in neatly with most peoples' normal lives and ways.
It's totally alien for most people, I know. I share links on Facebook to help educate people what it's like. I communicate how things are for me to friends individually. I think it helps my friends to figure out how they could treat me differently in a useful way.

And "perfect balances" often don't fit in very well with everyday ordinary life!
And the perfect balance keeps changing too!

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