1. My entitlement to half pay ends in 2 weeks time when I will become income-less.
The shift in role and feelings of dependency are more critical in my mind than loss of income. I appreciate I am in a fortunate position that my husband is able to support us both for the time being – I have been poor most of my life, been in quite a bit of debt as an adult which I scrimped and saved my way out of, I know what it’s like. So that just shovels a bit of guilt on top as I think i should be grateful all I’m struggling with is my pride.
Still this is my grumpy fuel list and it’s on there rightly or wrongly.
2. Doctors Surgeries
I have a really good GP who understands CFS. Not something to be grumpy about.
Here’s the grump – she works part time (good for her) and the NHS appointments system sucks. So, as I need a new sick note in 2 weeks time and I need to chat about a zillion things like medication and pain control, DLA, blue badges and what not – the only safe way is to ring 2 weeks ahead and make an advance appointment.
Except no-one is answering the phone at my doctors.
I cannot begin to tell healthy people how difficult it is to direct my focus, concentration and energy on making a call like this – and how frustrating and weeepy not getting through after 3 attempts makes me. I can’t just do something else and then dial again – I need a stack of focus to make this stupid call. Suddenly half my day becomes about speaking to the receptionist at the doctors – who will probably tell me there’s none left and I’ll need to ring in 3 days for the next round. Argh!
UPDATE: Finally get through at 3pm and guess what. There’s no advance appointments left. So I either have to go a week later (and wait a week to ring again and try my chances at an advance), or ring ring ring 2 days before the day and hope I get one. Or see another doctor who doesn’t know me and probably doesn’t know M.E. or like either us. Tears of frustration.
3. My phone is broken. No, my phoneline is broken.
I reported the fault on Thursday night and felt waves of relief and happiness that BT have an online system for these things. Speaking to people in call centres is one of my deadliest tasks – it’s so totally exhausting. I am considering taping a cue sheet to the phone that says “I am disabled. Please speak more slowly and have a little more patience. (insert swear word insult here)”.
Anyway – all was set to fix the problem on Saturday morning. Saturday evening – still broken … except now the online fault system is broken too. So I have no way to track what’s going on – oh, except ring the call centre.
Today we can make outgoing calls but there’s still a divert on the phone and incoming calls still get the fault message. I bite the bullet and ring BT’s special number.
Don’t you hate it when recorded phone messages tell you can save time by logging on to their web site – when the reason you are calling is because their web site is broken or the web site told you to ring the number? Meanwhile they are in fact wastng my time by telling me this.
I digress. Through a series of automated button presses I discover their system says there’s still a fault on our line. OK then. So I opt to speak to an advisor to see when it might get fixed. Once I had been on hold for 18 minutes (I wanted to get to 10 mins but I couldn’t cope) my brain shut down and I couldn’t remember any of the words to kick start the call or even my own phone number.
Online tracking still broken. Sigh.
4. I ache.
5. Simple things are foxing me. I am so tired and exhausted that simple tasks are not only tiring but I get all in a twist. My brain doesn’t know the logic way to do things simply, so I do them in a complex or muddled way which is physically more demanding and harder to understand my own actions and I get more muddled and so on and so on.
6. (Apart from my husband) I am not getting any help. All those people who said they would help are not around, or are not helping me how we agreed. And all those people who said “if I can help in any way just say” haven’t figured out that I don’t know how to ask or what to ask for, or I can’t repectfully guess what they might be willing to give. Or they are using that as an excuse not to help. Or they have forgotten about me because I am this strange sometimes-sharp-sometimes-brain-dead creature who moves between bed and sofa hidden from the real world.
This is a largely irrational and child-foot-stomping grump. I understand people are busy and people aren’t mind readers, etc etc. I just want someone to make a fuss and spend a minute thinking about what life must be like for me and using their healthy brain to figure out a way to offer to help. Grump.
7. I have a long list of doing things I cannot do and no-one to help (I exclude hubbie again as he already has a big section off this doing list). So frustrating and grump making is it all that my only option is to Not Think About It and loet the doing things fester and rot and cost me money.
(Here is something for number 6 – either ask for something off the list or at the very least offer to help me figure out the true hard copy List Of Doing Things and ways or people to get them done).
8. I finally get the blogging vibe back and now all the thinking is making my head go all migrainey. Which also means my new medication is not working today. Double grump fuel injection.