Alex Mac 🏁

if you like crap F1 jokes and weird neuropathies, I'm your girl #CIDP
#SmallFibreNeuropathy #ivig

[Alex Mac 🏁 @AlexHelenMac]

If you are a disabled resident do not buy or rent a home from @Clarion_Group. I'm homeless because they won't deal with a malfunction in the plant room which makes my entire flat vibrate, rendering it uninhabitable. It's been 3 weeks. I'm desperate #DisabilityRights #disabled

[Alex Mac 🏁 @AlexHelenMac]

3 days of hell. I don't have the energy to fight this any more.

I'm going to die.
But I want to at this point.

[Alex Mac 🏁 @AlexHelenMac]

If you are a disabled resident do not buy or rent a home from @Clarion_Group. I'm homeless because they won't deal with a malfunction in the plant room which makes my entire flat vibrate, rendering it uninhabitable. It's been 3 weeks. I'm desperate #DisabilityRights #disabled

[Alex Mac 🏁 @AlexHelenMac]

It's been over a year. Nothing is being done! I feel like I'm going crazy.
I'm going to publish the report from Ealing Council noise pollution team to shame them into action. But they've had it since last May so it probably won't do anything.

[Alex Mac 🏁 @AlexHelenMac]

@DiaryofaSickGrl my symptoms are worse in any extreme temperature but easier to manage when it's cold. Doctors are always surprised when I say that summer exacerbates my symptoms more than winter. But I find it easier to warm up than cool down. or, rather, easier to STAY warm than to stay cool

[Alex Mac 🏁 @AlexHelenMac]

Hey @TfL please could you pass on my thanks to Steve who was working at Chiswick Park last night. He was very kind to me and helped me find an alternative route when the district line was suspended and I was struggling with pain in my feet after recent hospital treatment. Lex

[Alex Mac 🏁 @AlexHelenMac]

2 days post #Qutenza #capcaisin patch and I've gone through a whole tube of #DeepFreeze
🔥

[Alex Mac 🏁 @AlexHelenMac]

@docsimsim @tenacious_mumma It was at St georges hospital through my neurologist at the time, dr al-memar.
I can't get it west london its not approved for small fibre neuropathy, different NHS trusts 😕

[Alex Mac 🏁 @AlexHelenMac]

Haven't posted about #SmallFibreNeuropathy in a while. I'm having #Qutenza next week and I'm fully sh*tting myself about the pain. But hopeful that it will help.

[Alex Mac 🏁 @AlexHelenMac]

@tenacious_mumma It was incredible. But I moved to a different area and I can no longer have it, the NHS Trust doesn't approve it for sfn. I would do anything to get back on it. I wish I hadn't moved 😕