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@laurenlucyjane 

Last reply

laurenlucyjane

Not trusting my body

Hi lovelies, I feel like everyone here has probably felt at some point that their body has betrayed them on this MS journey. It’s really starting to mess with my head, I’m very fortunate when it comes to treatment and disability level but recently I don’t know what it is. Everyday I go to sleep and I plan how I’m going to do better tomorrow I’m going to get it together but I wake up and I just can’t. The signals my body sends just aren’t true, whether it tells me if I need the bathroom which causes me to panic when I’m out and then I get there and I don’t. To spasming that causes my back to give out. I just don’t feel like my body is my own anymore. I’ve been diagnosed nearly 4 years and I think I just never really dealt with what was happening and it seems to all be hitting me now. I know the uncertainty is something we have to expect but just any sense of control would be lovely right now. I’ve become a total shell of who I was before, I won’t date or have sex or go really anywhere because I’m simply terrified of everything now. If you read all this I appreciate you! I think I just had to get out, whether it makes sense or not.
London, United Kingdom
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@Clary
@Clary
 

Totally makes sense. It sounds like the diagnosis is hitting hard and symptoms are causing mayhem. Can you reach out to your MS team? It sounds like practical help could improve things. Charities in the UK can be hugely supportive. They sometimes provide counselling and helplines. I hope you can get the support you need. All the best.

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@ChrisH
@ChrisH
 

I can definitely relate with regards to a couple of things that you have said. The bathroom “thing” really troubled me (and still does to a degree), those signals that I had become so used to had become a little less black and white. I had to know exactly where I was going. How far. Is there a toilet en route. Is there one there. My body had started changing the delivery of the message from “it’s a bit chilly, maybe get a coffee and pee at the same time” to “it’s a bit chilly…BY THE WAY YOU HAVE ROUGHLY 20 SECONDS BEFORE YOU PISS YOURSELF 🚨🚨…false alarm, coffee?” I have recently started therapy, to help try and get my confidence with life back on track. It’s hit so many areas, my work, social life…I feel it’s definitely helping. It’s a shame it’s taken so long (four years 🍻) for me to speak so openly about it; its the self reflection/realisation of saying things out loud and actually making sense of my thoughts and feelings, that have really helped. The therapy is through the NHS, there is probably a similar scheme/system in your area (my ms team gave me the information). I should stop rambling.

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