The Mental Debt Struggle...

AntoMac

Going short of sleep makes functioning much more difficult doesn’t it Keedie? I find the changing of the clocks can have quite an effect, even when we gain an extra hour.
That’s some real encouragement with the progress your son is making. If he’s getting positive feedback from his teachers that will really give him a boost.
Hope you manage to catch up on your rest.

[Deleted User]

Keedie it's brilliant to read that your Son has received such wonderful feedback. I'm so happy for you both. 
Pressing pause on decision making around work responsibilities etc sounds like a very good idea. I can see that you are prioritising your wellbeing and it's inspiring. It's great that you have a nice break away to look forward to, keep focusing on that.

I really do hope you fell asleep with that glass of wine you deserved.. 🍷 xx

Keedie

What a day 😢. I've been trying get SEN support for my son for years, and a proper referral was finally made by his former school in February 2022. I've been chasing since he was excluded and getting the run around. Finally got through to a new SENCO at the old school today and she couldn't find any referral that has been made! She contacted the Speech and Language Therapy team and they said they've received no referral, and they wouldn't have accepted it as we lived in a different borough to the school so he can't remain on the list when he's not at the school anymore (which is not what I was told repeatedly by the school and my own local authority). So we've waited 9 months for nothing.

I don't know how to try and get things sorted quickly because he's in Year 11 and getting extra time for exams with an external exam centre is really difficult. And I'm right back to square one. I don't have £450 for a private assessment, but may have to find the money as with no diagnosis or assessment, no support can be implemented and he'll need it for sixth form onwards. CAMHS said that I can ask them for support, but the initial assessment with them took 9 months and then they said I have to wait around another 4 weeks for the outcome. So I don't know what will happen there. He's finally getting on track and more confident and even spoke to his English teacher today, to ask for extra time in his upcoming assessments. He keeps saying it will help him for the 'real thing' when he gets the extra time in summer, as his support  package will be in place. He's now going to speak to his Maths and Science teachers at college next week to get some help there as well. So although I'm very proud of him and happy about his feedback, I'm a bit desperate to get things sorted as it will crush him if he finds out that he has a very limited chance of that additional support for his GCSEs when he's struggling so much already 😔.

I realised about 2 hours ago that I've become hypomanic due to the stress of the last few weeks, the lack of sleep and the change in time. So yes, @AntoMac, the shortened and disrupted sleep can have a detrimental impact at times 😴. I'm so glad that I have my trip next week to nap when I need to and to spend some by myself so that I can come down. I feel agitated and not tired, but other than that, I feel normal. But in hindsight I should have known I was becoming unwell, because I've got a bit arrogant this week about things that annoy me, and my skin has been itching. This usually happens when I'm kinda overstimulated or I sometimes feel like there are insects crawling underneath the surface of my skin. The insects crawling is a surefire warning sign that I'm entering an episode. The skin tingling can easily enough be the hypersensitivity of fibromyalgia hence I missed it. But at least I have my bipolar support group later as it's the first Friday of the month. 

Thank you for your kind words @Adeley, it's a funny thing to be an inspiration to someone else as I can't see it, but I'm touched nonetheless 😀. I think making a decision regarding work that is based on my wellbeing and long term goals, is definitely a decision to make after I have had time out to work on said wellbeing. So I'll have a proper think and see how I feel when I get back to London and how I'll feel once I've been back at work for a week. The Assistant Director seems to have taken on board some of the feedback that I gave him about staffing and job levels and the remit of the work we do and he has stated in our team meeting today that there will be some changes and that he is looking for volunteers to review processes etc. So I think that will work. Although I don't think he appreciated me telling him that he made a hiring error by recruiting at the level that he did for my sub-team as we needed a higher level role to deal with more complex queries. But we'll just blame my unfiltered honesty and arrogance on the bipolar, even if I stand by my point, the delivery was rather blunt dismissive. Oh dear.... 🤦🏾‍♀️😂

Keedie

I had a great time at my support group yesterday, as we were talking about a lot of topics that can be very taboo with mental health and they gave me some advice about my driving situation. Some people had lost their licences, but had no issues in getting it back after a while, like 18 months, but the general consensus is that I'll likely be given 1 year's licence and then when I reapply I might another year etc and that the maximum time you can be given for a licence is 5 years at a time. But I have to face the reality that I could lose the licence for a period of time 😩. 

I've accepted that I'll always have a restriction on my licence in terms of the duration, but there isn't a restriction that goes with driving conditions. It's either you're fit to drive or you're not. Turns out that those that were told about notifying the DVLA had been sectioned or just had very good doctors. A good few people in the room didn't even know that it was a notifiable condition and that made me feel less stupid for not knowing.

I paid £17 to the Bank of Mum 2 (family holiday), and now I have £133 left to pay and then it's all cleared. So once I've done all my care work for this month it'll be paid off - yippee. I looked at the spreadsheet and I'm at 24.55% of overall debt repaid, getting excited about being over 25% by the end of the month as only this payment to my mum and Creation has come out so far. Excluding anything I manage via the PAD Pot, the standard payments for the rest of my debts over the course of the month should take me to 27.30% repaid. But if I can get this up to 27.5% I will be very happy.

I've booked my coach to Brighton for next week as there's a lot of rail strikes and I considered driving, but at £14 a day for parking if I am not able to find a disabled bay in the city centre (which is unlikely) and then factoring in petrol costs, it just didn't seem worth the effort. Besides, I can just chill, read and listen to music on the coach. It's a long drive though at 3 hours 15 minutes as it goes to both Heathrow Airport and Gatwick Airport on the way to Brighton. But it takes you right near the pier and it was £16.80 return, but I was kicking myself, as I saw the tickets cheaper in the day but I was busy and by the time I sat down to sort it out, the price had gone up by £5 return, but still so much cheaper and I don't have to worry about the draining journey by car.

I'm off to my East London Sister's house today for a few hours to see her and her family and I'll be jumping on the tube as I hate the drive to her house and the traffic is always horrendous. I've also been thinking that I need to mentally prepare myself in case I do lose my licence. I could be on public transport by default, so I'm trying to get used to not using the car. 

Keedie

I’ve got £521.15 credit in my Octopus account and yet they’re saying if I wanted a refund I could only have £14.20. Surely that’s a bit high? Why would they hold £506 ransom??

I don’t actually want a refund as my usage in October was around £98 for gas as I’ve started using the heating a bit more and that’s with me being conscious of my usage. I was just playing around with the app and it struck me as odd that they can just dictate what they’ll give you if you do want a refund. I’ve been thinking about getting a smart meter but not sure what that means for being able to get monthly bills like I do now so I can make a comparison month to month. I’ll have to try and figure that all out. 

LittleMissDetermined

Hi Keedie, it may be worth giving them a call to see why they want to retain such a high amount, if you're using £98 of gas it does seem very high! We have a smart meter now and I am still able to access my statements on the online account, I am with Eon Next though but I'm sure Octopus will be similar. 

I bet you can't wait for your trip away and a bit of 'you' time 
LMD x

AntoMac

That’s still a good price for the coach Keedie. Think of the petrol and the wear and tear on the car.  It should be much more relaxing by bus, although 3 hours seems like ages to get from London to Brighton.
It’s strange that we often think ourselves silly for not knowing something, and then it transpires that many others didn’t know the so called ‘obvious’ either.
Sounds like your time away really is coming at the right time.
Was lovely to bump into my cousin last night. Her daughter has not long finished at Brighton Uni and her boyfriend, who she met down there, was here visiting. Seemed like a nice lad. It’s also a happy place for one of my other cousins’ daughter, who is in her second year down there. 

Keedie

I thought it was high @LittleMissDetermined, glad to see I'm not just being paranoid/overly suspicious. I used £48 electricity, so just under £150 for the month. It's almost like they want 3x the monthly usage as credit which seems silly as we get the energy support scheme payment and my direct debit is £100. So it's a bit odd. It'll be nice to still get my monthly bills if I switched to a smart meter. Does Eon do them monthly? My mum's with Scottish Power and has a smart meter and she gets quarterly bills. I'll definitely look into a smart meter after I get back from my trip. Especially as Octopus keeps going on about cheaper rates of electricity and certain times when it's 'free'. So it's worth understanding it a bit better, but I don't want to call them for someone to explain it as they're taking over Bulb so I'm sure they're very busy, so I'll wait a little longer.

I did feel vindicated @AntoMac about not being the only one ignorant of the obligation to tell the DVLA. The man at the DVLA made me feel like a deceptive criminal for not declaring it sooner, but at least it's done and I'll just wait and see what they do next. My insurance is with Churchill and they were so kind when I had told them, they just made a note on my file and said that it doesn't change my policy and they're not concerned with medical conditions (as in they don't increase premiums as a result of having one). That made me feel a bit better about things, as the increase in insurance had been a concern, but it's still £30.39 a month - so at least the budget is in tact 🤗.

I'm definitely proud of my bargain coach ticket, and the journey is so long because of the two airport stops. Back when I was at uni, I used to go to and from Brighton via coach when I was going back to London to visit home and I had a multiway ticket, as I got 10 single trips between Brighton and London for £33 and it had no expiration date, I could just rock up at the coach station and jump on the coach, and the coach drove through various parts of South London so you could hop off and take your journey from there. But that's all changed. So I just need to work out how to get to London Victoria Coach Station in the best step free access way. And with the shortest amount of walking possible. I wish I'd gotten my act together earlier and had that London Taxicard sorted, as it's on my to do list but I got sidetracked by the blue badge and freedom pass. But it would have made life easier to get the taxi to the station knowing that it's heavily discounted. I can't justify getting an uber. And I can't get the tube, as my closest tube station does not have step free access and I'd have to change tube lines and the tube is awkward at the best of times in terms of finding a seat and I'd be anxious and overwhelmed with a suitcase as well. So it might have to be a bus job. I just need to work out how far the bus stop is from the station.

I'm definitely looking forward to my trip and it is coming at the right time, as I'm very tired and I'm desperate for some time to myself. It'll probably go too fast though 😂. I absolutely love Brighton and so I'm not surprised your cousins have had and are still having a great uni experience down there AntoMac. Were your cousins able to experience uni together? If so, that must have been so nice.

I got my letter from the Pain Management Clinic (PMC) that I got copied into, you know the ones that they send to the GP? Anyways, I had that letter come through today and it was actually two letters in one. One was requesting that the doctor put me forward for the psychological treatment that they have with the INPUT programme where they teach you coping strategies and lifestyle management to cope with long term pain and living with a chronic condition. It's kinda linked to the PMC but a bit of a different section, so the GP needs to refer me there. The other letter was one of those summaries about their observations and what the next steps are. It was the second letter that made me sit down and shed a little tear. The doctor summarised the difficulties that I experience, and I hadn't realised during our appointment that when she was checking me out and asking questions that she was doing a fibromyalgia screening type scored assessment. Anyways, there's a Widespread Pain Index (WPI) which I had never heard of, but I scored 17/19 as the trigger locations for my pain, is present in 17 out of the 19 points in the body. There's also a Symptom Severity Scale (SSS) which looks at fatigue, waking up feeling unrefreshed and cognitive symptoms plus other related symptoms such of headaches, lower abdominal pain and depression, and there I scored 12/12. 

I know it sounds really stupid what I'm about to say. But I read that letter twice and cried because I really am disabled. And I feel like I'm finally being seen, especially after years of being medically gaslighted and made to feel like I was exaggerating. When I told my East London Sister my scores she was stunned and couldn't believe it (though I'm not sure why she was so shocked as I'm always mentioning my symptoms, but maybe it's just become like white noise and people don't really hear me?).  

LittleMissDetermined

Eon next do bill monthly Keedie, I think it's Edf and Scottish power who do it quarterly still 

Debsnewbudget

Aww Keedie , sending hugs x

I always use the TFL plan a journey website when trying to work out how to get from A to B as it gives all the options and timings for the journey.