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I'm on the struggle bus

Sorry in advance ... I just need to vent a little and I thought this would be the right place. It's nice to have a group of people that know what you're going through. I'm seriously on the struggle bus. I've been deemed "high risk" for covid so I've been exiled from my home and banished to my nanna's house (a little exaggeration) as my mum is a key worker and could bring the virus home pretty easily. I've been away from my family for over 14 weeks. My nieces live with us and they're like my kids (complex story) , I normally spend every single day with them and being apart from them is really difficult. My mum is my rock and I can't even hug her. To top it all off my ms symptoms are going haywire with the heat and the stress, I'm having new issues with my vision and intense nerve pain near and around my eyes which isn't great. My ms nurse told me she would talk to my consultant but guess what I've had radio silence ever since. Thankyou for reading if you got this far and I'm sorry for unloading on every one.

Hello @jade770, 'the struggle bus' is a great expression and nicely sums things up. I had a phone consultation with my consultant, she told me that all of her caseload of patients has experienced a worsening of symptoms and increase in anxiety, so I would give your MS nurse a call again. The isolation effect is really tough to deal with, as if life's not tough enough with our diagnosis as it is. Don't feel bad for unloading, you're only saying what many of us are feeling. I hope you are managing to stay in touch with your family via technology; stick with it and look after yourself. If it's any consolation, at least it's gonna be a sunny day and we're not in the middle of vicious winter.....x


You might want to consider having those new symptoms assessed lovely. If this is a relapse with optic neuritis you might want to consider a course of steroids. I know it's probably the last thing you want to think about right now and goodness knows, I hope it's not, but I know the pain you're describing and it can be truly horrendous. Anyway, there's no reason you can't make contact with your consultant yourself. Email them, copying your MS nurse into the email. You can call their secretary for the addresses if you don't have them. No-ones gonna die if you send an email and you may get some such needed contact from them. Worst way, how about going via your GP is you've found them any good in the past? Go back to your MS nurse too, it's the squeaky wheel that gets oiled you know? Just wanted to say you're not alone anyway. You must be missing your home and family so much. I hope you get to be safely with them again really soon. Hang in there. xx