Alex Mac 🏁

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

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.

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.

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

@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

What weather is the best for your chronic illness symptoms? For me: cold

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

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

@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 😕

@AlexHelenMac @tenacious_mumma May I ask How did you manage to get IVIG? I’m in west London too, was wondering if it’s somehow possible to get it on the NHS?

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.

@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 😕

@AlexHelenMac Did the IVIG not help?