Julie, my new disability advocate has created a u-turn in my thinking so much that when I didn’t hear from her since our assessment last week I started to wonder if she’d been a mirage or even she didn’t exist and was a new ME symptom!
But no. Her office computer had broken. Now it’s fixed she’s been in touch.
Social services referral
She has already made a referral to Social Services. This was done by an online form. I haven’t seen it.
Correction: she emailed me a link but obviously Social Services can’t have people sending links to complete forms over the internet willy nilly, so it defaulted to the blank start page when I opened it.
I’m OK with not seeing it at this stage. I expect that whoever assesses me will bring a physical copy and I can ask for it then.
Julie said they have a short turn around between a referral and an assessment and that I should expect that they’d get in touch with me by phone in the next few days.
The idea that they’d contact me by phone rattled me a bit. Phone calls or even conversations in person are one of the things that really exhausts me, physically and cognitively. My rule-of-thumb is not to answer the phone if it’s a number I don’t recognise either.
Bit of a problem. Julie is so nice though, that she said: “No worries, I understand. They’ve got my number too if they can’t get in touch with you.”
🙂 I’m really beginning to trust her and like her. Even Crystal, my counsellor said of her in last week’s session:
“My God, Lindy. She sounds soooo good!”
The housing situation
Emails have also been going to and fro between Julie and me as she advises me about my housing situation.
I sent her a copy of my tenancy agreement which she’s read and analysed. Now she’s read it she says that there is a clause where either landlord or tenant can break the contract with 2 months notice on either side.
This ‘break clause’ can happen at any point during the annual contract.
The strategy, though, is to use the condition of the flat as a lever to move as opposed to simply saying:”I’m off, see you around.” This could also be the lever to move into another property that my landlord owns – *groan.*
Eagle-eyed Julie also spotted a clause that says that if the landlord cannot supply heating they will credit the tenant with £10.00 per day as a result. She’s thinking about my kitchen which doesn’t have any central heating installed.
I imagined her eyes spinning and popping with pound signs!
She wants me to email my landlord with the photos that I’ve taken of the mould. She wants me to send a draft to her first so she can edit it and then I’m good to go.
Stress and ME symptoms
In my last post I said that the journey I’ve been on since having ME has been stressful. As you can imagine, adding a terrible landlord, unsafe housing, fuel poverty and being on benefits is more than enough when you are ill with CFSME.
Previous dealings with my landlord have been fraught with difficulties, stress and tension. As a result and I think also because of the way ME changes your emotions, I have an overwhelming anxiety reaction whenever I think of having to deal with him.
My heart starts racing, horrible thoughts tumble around my mind, I start mentally panicking.
Objectively I know that this is an anxiety reaction. The problem is that whenever it happens, my ME symptoms are affected too. Maybe not in small doses of anxiety, but in large doses, the payback is extreme and have made me really ill in the past.
So how do I tackle this personal situation and also deal with what I need to deal with as Julie is suggesting?
I decided I trusted her enough to share. I thought it was a good idea to say how my ME symptoms are managed on a day to day level and how this will affect them. I wanted to explain so she understood any reluctance I have about progressing.
I really thought about what to say. Having sat at my computer at work and had people email me with long involved emails filled with convoluted personal stuff that doesn’t go anywhere except to offload, I know how it feels to read it. Thinking clearly with Brain Fog and constructing any email that is always tricky.
Add anxiety into the mix which makes you want to spill everything like an overflowing bin and there’s a problem!!
I thought about an old boss of mine saying: “Less is more, Lindy. Less words in emails works better.”
So I wrote this:
“I’ve had dealings with my landlord in the past. I’ve had to phone environmental health to get drains fixed and involved Citizens Advice to tackle another flat in disrepair. I’ve been here before and it’s always enormously stressful.”
To which she replied.
“Don’t worry. I’ll be here every step of the way.”
Then she kicked my anxiety spiral off again by saying that she wanted me to email him with the photos of the condition of the flat. Anyone who’s ever had anxiety knows what I mean when I say that it created a whole new spiral.
I wrote again:
“My home has to do more than someone who is unwell. I have a routine that I stick to, I have to have peace and quiet and calm. I also have to rest regularly. Once this process starts it will affect my health.
I’ve thought about it and I’d like to get through the social services assessment first. Then after that I’ll send the email, to my landlord if that’s OK.”
Julie wrote back: “I completely understand. I think it’s a good idea to get through the social services assessment first. Today I’ll start contacting some lettings agents to see what they say too.
Then….”I’m here to help, and happy to help you.”
Little things make so much difference when you have ME – even if someone doesn’t properly understand, saying the right thing lessens the load.
After so many frustrating appointments in CFS clinics and meh! consults with GP’s, THIS is what I need. THIS works!
I’m really beginning to like Julie. She’s great. 🙂
© Lindy 2015