Hello i am katie

I have been living with ms for 20 years now and have recently had more relapses it’s hard to talk to my family about it because they don’t know :pensive:how to respond to me or they just call me lazy if i can’t do the cleaning or cooking or even go out for a walk because i have no energy
I feel so alone sometimes that’s why I started talking to my cats to help me feel better thanks

Nothing wrong in talking to your cats. Infact a very good thing to do. They accept you for who you are (provided they get their food and a cuddle)!

I think it happens all too often that family and friends do not understand the debilitating effects MS (and other neurological conditions) have on people. You can appear pretty normal, but fatigue isn’t really visible - maybe look a bit drained, but nothing more. They think it is just like being a bit tired, which of course they know about, not how it feels like the energy plug has been pulled out, and that you are just on trickle charge, and all your body’s cells batteries are pretty much discharged, and just how debilitating it is. Though, one thing with Covid, some are getting to experience a touch of that sort of fatigue, though in most cases it just lasts days to a few weeks.

Also things like limb heaviness too. Maybe if they were made to strap loads of weights to their legs they might just get an idea.

I’ve not found a really good description of what MS fatigue really feels like, from the person’s perspective. Seems strange given how many experience it. This article from the BBC describes quite well neurological fatigue from the experience of someone with brain damage from injury, and talks about other causes of neurological fatigue. It certainly chimed with me. The bit about when the challenge of trying to decide which bottle of milk to buy can be almost too much, when fatigue has hit. And the brain just shutting off.

Anyway, on here you are not alone. Sometimes replies can be a bit slow in coming - probably based on people’s energy levels - but you usually get a reply, and some lovely conversations can pop up out of nowhere.

It is very hard work, explaining people who have not been there, particularly when our own energy is at a low ebb.

I am sorry that your nearest and dearest cannot or will not take the time to learn about how things are for you and how you can work together to make things a little easier. It can be complicated with family - they don’t want the person they love to be ill, and they can be in denial too, which isn’t terribly helpful. I’m not saying that’s the case here, just that it can be one of the many ways that communication wires get crossed when someone in the family or the friendship group has a condition like ours.