er, friends?

[Rosebud66]

One of the things I have been gutted by in the last four years, is the loss of friendships. It’s as if I am no longer visible and I know they are all getting on with their lives while I battle with constant fatigue. I feel so upset that friend and family have walked away, and I know it’s because I can’t get out at night due to fatigue, I can’t sign up to anything and because I missed a gathering tonight, it’s really hit hard…. Any hope out there? Does energy come back, ever? I used to be so sociable and it’s so hard being this hermit!

Thanks for any replies!

[WonderingWanda]

I really feel for you. Missing out is hard.

The difficulty is the fatigue can be unpredictable too so it’s difficult to arrange things in advance as there are no guarantees that when the time comes you will be able to do it.

Have you tried reaching out to your friends and explaining how isolated you feel ?

Maybe you can try suggesting a lunch or even just a daytime coffee chat rather than an evening out.

The large groups I used to enjoy in an evening are now just an exhausting and unpleasant experience for me so I have started inviting small groups or single friends out to lunch somewhere and I have explained that I still like their company but just can’t tolerate the type of socialising I did before.

[Rosebud66 in reply to WonderingWanda]

Yes I have reached out and explained but it hasn’t changed things. They have moved on after the last three years. Unfortunately I get nonstop migraine so it’s hard to set a date even during the day… it’s emotionally devastating but perhaps they weren’t great friends to begin with, and have their own clique. Ah well, I live in a small village and that’s how it goes.

[WonderingWanda in reply to Rosebud66]

It seems as if the migraines and fatigue are a major factor.

It might be worth exploring more ways to control these first as the extra mood and energy that would follow might lead to making new friends anyway.

I recently added Magnesium and increased my Melatonin and it has helped with the migraines. I don’t take any preventative tablets otherwise as they didn’t seem to help.

Maybe some GP input and some counselling for fatigue management ?

I’m sorry it all seems so bad right now.

[Rosebud66 in reply to WonderingWanda]

Yes, I’m on Melatonin too, but may go back to the magnesium. I have to take medication for my migraines because they are out of control. Just hoping that one day they will calm down a bit but of course stress from emotions keeps them triggered. I wonder whether a new way of thinking about myself is needed as it’s the exhaustion from migraines that makes everything feel so awful…

[WonderingWanda in reply to Rosebud66]

Absolutely everything is worse when you are fatigued. Migraines included. I recently saw a neurologist who said that they recommend up to 15mg melatonin to help but my GP is only happy to prescribe 2mg as that’s what it’s licensed for. I rely on a relative in the US to send me the extra!

I really think that therapy can help reframe and focus on the positive. If you can’t see someone right away then the next best thing might be a book that my psychologist recommended to me called The Reality Slap. It’s on Audible and Spotify. I genuinely felt that he was speaking to me and it felt like I was being talked to by a therapist. He has some tools you can use to ground yourself and I found d it helpful.

I know that whenever I focus on the symptoms, talk about what I have lost or can no longer do, then I can get very low.

I also found that whenever I just looked around me at the world and focused on tiny beautiful things i could feel fortunate to still be here and more at peace with what had happened.

Every day I am grateful and that has turned things around. There’s always something to be grtfor if you look for it.

[Rosebud66 in reply to WonderingWanda]

Thank you for suggesting The Reality Slap.. it’s been comforting to listen to, especially as my eyesight has been degenerating with this brain injury, easy to listen to and good tips. 👍

[Painting-girl]

Seeing people does help your mood, so can be worth a bad 'bust' phase afterwards. Best advice I had was to rest up for a couple of days before something I really wanted to do, and plan to have a really easy few days afterwards. When I remember, I make sure I've got a supply of food that's easy to just heat up from the freezer, so I don't have to think. Even if I live on stew for a few days. Not that it's ever good feeling lousy, but planning for it can work.

[Rosebud66 in reply to Painting-girl]

Yes I was helping someone garden during the day and felt exhausted by mid afternoon… so I could take that idea of nothing before a bit more seriously. Thanks.

[lcd8]

So sorry you are experiencing this. But I'm afraid many friends are, in my mind at least, a little fickle. The first sign of 'trouble' and they don't want to know. Or maybe I'm being a little unfair and they just aren't sure how to deal with it. But in any case it can leave the BI survivor feeling rubbish. My advice is to try and forget them. People that love you and care will stick around. If you can aim to make some new friends that are a bit more compassionate and will understand.

[Rosebud66 in reply to lcd8]

Yes, hard to know how to with illness.,, and age! But you’re right, in my long experience of friendships most of them move on and many are transactional… you just need that one friend don’t you?

[lcd8 in reply to Rosebud66]

Absolutely!

[7HT-]

I have found 3 quiet days before and after the event, do help a lot. Friends get bored of us not having anything new to talk about, plus because they only see us on a “good” day, they struggle to believe what we are going through.

This YouTube channel helps explaining things to family and friends about fatigue & spoon or broken battery theory youtu.be/Yp4YSIWwTSQ?si=Iay...(Not working as expected?)

Binita Kane is a UK GP and her young daughter has long covid

[Rosebud66 in reply to 7HT-]

Thank you!

[Painting-girl in reply to 7HT-]

Such a good description - thank you for posting.

[Nemo24]

Would say energy levels go up and down so planning ahead doesn't always work on the day. If night time is tricky is there anything going on in day time near you? I am hopeless at drawing but joined an art group. Where I can do as much or as little or have a break when I want. Some old friends been lost along the way. Some are in a really special group who have been great support since my accident & some are completely new. They didn't know the old me so it's easier with them sometimes. Good luck with trying some thing new.

[Rosebud66 in reply to Nemo24]

Yes, I am an artist anyway, so I could do with honing skills. I think the term has started, but I could certainly look at next term. Good idea.