PIP Tribunal

TL;DR: Got enhanced daily living, enhanced mobility PIP until December 2020. We won.

Today was not the nicest day for travel, being cold and snowing. Hot water bottle and hand warmer were much needed, along with winter weather stuff. Got there 15 minutes early, which is good going for us, especially as Johan had to push me (the hardest bit being unavoidable no matter how we travelled). When we arrived they were reviewing the evidence, which Johan had read and I kinda knew the existence of (being too ill to read most of it myself). Got called in not long after.

The tribunal itself went fine. They asked that I answered the questions if possible, but Johan could take over if needed and was given time to add to my answers. They were only concentrating on a couple of descriptors as we provided so much evidence. Some questioning about my DLA history as that wasn’t provided by the DWP (and Johan didn’t know it all as some was before he knew me). Mostly questions on mobility and using my shower chair/washing. I was struggling near the end but they asked Johan to add anything he wanted and then we were asked to leave while they discussed it (though I told Johan I was boaty and then had to describe what that meant for the record – dizzy and like everything is moving). The tribunal panel were nice and understanding, which probably helped me be able to contribute so much.

During the wait I had my eye mask on while Johan was going on about how it was the hardest bit. Not long after we were called in and told the decision. Being told that they only changed the points in a few of the descriptors because they stopped at 12 was pretty awesome. I’m now on enhanced daily living and enhanced mobility, going from standard daily living and no mobility, so it’s a big change. My reassessment date is December 2020, which is fair enough as my condition has changed quite a bit in the last few years (mostly for the worse, but I’m optimistic that’ll it be better soon).

Getting home was interesting. The snow was heavier and was sticking more, which is not ideal for wheelchairs. The hardest part was the ramp going from the street up to the ramp to the front door – it’s hard on a good day because it’s so steep, and with no grip it’s horrendous. I ended up helping to push to get through the worst of it, as without the wheels were just slipping and we were making no progress. I was scared we’d have to contact someone to help (no idea who), but between us we made it until Johan could manage by himself again.

Once home, back in bed and mostly sorted, Johan read the tribunal report to me. A couple of the changed descriptors still aren’t entirely accurate, but I got enough points so don’t care. I’ll need to eat and calm down before I can rest as I’m running on adrenaline, but I’m very happy.

I know I’m going to pay for today soon (especially the wheelchair pushing) but it was definitely worth it. It would have been much harder for me mentally to not be there, so worth any payback I get. Hopefully it’ll stop the nightmares that I’ll get it all taken away at least for a bit.

We fought the DWP and we won.

Teeth SortedΒ 

Yesterday I went into hospital to have my teeth sorted under a general anaesthetic. Considering I have severe ME, it went about as well as it could have.

The ambulance with the stretcher was late, but we were expecting that and I was second on the list because we knew I’d not be getting in for 8am (I probably would have been first otherwise). The journey was horrible but I listened to music to help cope with the noise (along with wearing my earplugs and ear defenders) and used Google maps to see how long it would be. Got there and was put in a side room which was good.

Not too much later we went through what was going to happen, consent and stuff. Johan filled in the forms and signed for me (I gave verbal consent for him to do everything) and they took my blood pressure and heart rate. Blood pressure was normal (higher than my normal but I was anxious) but my heart rate was bouncing around, but only between 99 and 120ish bpm so not too bad for me. When I say my heart is doing funky dances, that’s part of what I mean. Once I told them that was normal for me they accepted it.

I’d made up a personal information sheet that was two sides of A4, that we laminated as we could only find A3 lamination sheets and I was also making a communication board so put them in the same sheet πŸ˜› I based it off a friend’s version and I think it really helped them understand me. It explained my normal difficulties, medication, what to do if certain things happened (if I go nonverbal, if I have a panic attack, etc.) and what not to do, especially sitting me up (which is normal procedure). It’s generic enough that it’ll be useful as a normal emergency sheet, and will just need updating if anything changes.

After that stuff we had a little wait, then got told off for my chocolate consumption (I think keeping my weight up is more important, and the acid reflux is probably more damaging in the long run). Johan struggled to get compression socks on me (I ended up doing one and hurt my hands, he managed the second after being shown how) and I had a gown put over my pyjamas and it was off to theatre. I took Po with me as I knew having a penguin there when I woke up would help. I also wore my sunglasses as it was really bright.

In theatre it was the usual confirmation of who I was, and then I was asked if the signature on the consent forms was mine. When I said no the guy jumped backwards and some of the other staff laughed. Then he confirmed that it was Johan’s signature and that we both knew what was happening, the risks and stuff. Next everyone but the anaesthetists left and one of them started looking for a vein in my hand. Because I had already hurt my hands earlier, the tapping on the back of my hand was absolute agony. I think it hurt more than the canulla being inserted and that’s bad enough. Fluids and meds were given, then they gave me some oxygen, then they told me they were putting me to sleep and injected a stinging liquid. Not too much later I was asleep.

Waking up I was very groggy. I remember feeling Po under my hand which helped with my anxiety, then being very shivery and then had warmed blankets put on me. That felt really nice as I became aware of it. Johan came in, and I asked for my eye mask because it was too bright with just my sunglasses. He was talking to me but I can’t really remember anything of it. They removed two teeth and filled 4 more, mostly at the back. I’m down to two wisdom teeth now.

Got wheeled back to the side room (the movement was horrendous) and the light was turned off which helped. Was still very fuzzy and I think I drifted off to sleep a few times. Was asked about pain, said my face was okay (it hurt but not too much) but my body was really bad. Was told I could have my normal tramadol and a drink and that helped. After a bit more time I was able to swap to my sunglasses and talk to Johan a bit. Asked about my teeth pain again and it was okay, so they called for the ambulance and they turned up.

The journey home was not exactly fun. They kept the main lights off in the back of the ambulance, and I listened to music with my ear plugs and defenders on. I also watched the map so I could tell how long it would be before we got home, which helped as I don’t like not knowing what is going on. When it said 1 minute from home I started feeling really nauseous, but was able to cope knowing it wouldn’t be long.

Ambulance guys got me back into my room, and Johan hoisted me back into bed (the hoist sling had stayed under me the entire time, which isn’t too bad if I’m not sitting on it). One of the ambulance guys asked us to let them know when I next need them so they can take the day off (the path and ramp from the road to our flat is very steep- everyone who has to push me up it complains) then they left. Johan gave me some more water and some jelly which helped me be a bit less hungry and thirsty, then some cyclizine a little later as the nausea wasn’t improving.

I spent the rest of the day on my tablet as so long as I didn’t move, I didn’t feel too bad. The worst pain was in the hand the canulla had been in, which I took as a good sign. It also seems my contact allergy to adhesives has improved, as the sticker around the canulla was fine (unlike last time where it was a horrible itchy rash). The ECG pads were still a bit red and itchy but not too bad.

I woke up a few times during the night, and my main problem was thirst as I was too tired to call Johan and as I’m not allowed to suck I didn’t have my hydrant (or can be used without sucking but we were worried I’d forget if tired, and I really want to avoid dry socket if possible). I was able to ask Johan eventually for some water (plus electrolyte tablet as the salts are good). He gave me my meds and once they kicked in my pain levels were back to Danni normal, which is still really bad pain but bearable.

Ended up sleeping again for a bit, then woke up as the carer came in and got annoyed that she put the washing machine on as it was too noisy. (To be fair to her, if the doors are closed it usually doesn’t disturb me too much, and she hadn’t been told not to put it on). Put my ear defenders and sunglasses on (my eye mask has ear muffs but they don’t block as much noise as my ear defenders) and that helped. I didn’t feel up to having any personal care done and wasn’t allowed to have my teeth brushed yet, so just said a few words and I’ll see her this evening.

We had our new dryer delivered this morning, after the guy who came out to do the repair due to the big fire risk thing said it would still be a fire risk after. As I wasn’t feeling too bad once I’d woken up a bit and stuff I told Johan he could test it, and though it’s pretty noisy for the first couple of minutes it then goes really quiet (to the point where the wind was disturbing me more). As I can put ear plugs in and ear defenders on we’ll be able to use it so long as I’m not in payback or relapse. It has a wetness sensor and seems to work faster than our old one, so I’m looking forward to soft warm towels and pyjamas again.

Other than a bit more tired I’m not too bad right now. Have been eating jelly, soup and milkybar desserts, and finally tried out my new cup which is designed for use lying down, has two handles and needs less tilting. I can manage it myself if I’m passed it so I’m really happy with it. Once I’m over the worst of this recovery I think I’ll be using it for hot drinks as I don’t really like using a straw for them. Until then it’ll be sugar free juice with electrolyte tablets.

I read that tomorrow will be the worst day as that’s when the swelling kicks in, and is also when my payback tends to start. I’m hoping it’s not too bad, but need to ask Johan to get some ice packs in the freezer in preparation. I’m also getting rather tired now so might nap again.

Brain broked but stuff happened

Physically I have got better. Cognitively I have got worse. This is not unexpected but very annoying. I am struggling to understand even simple things like my bank account and emails.

Because of this, Johan is now my Appointee when it comes to the DWP. This means he’s responsible for contacting them, filling in forms, and my money now goes into his account (which he then sends to mine because the bills come out of it, but when we’re able he’s going to be added to my account so he can manage it as well). We were worried that they’d say I didn’t need an appointee but instead they asked why it had taken so long. It was very hard for me to admit that I needed that help, and as soon as I’m consistently well enough to manage it Johan is going to hand control back to me.

Johan had his PIP renewal. We were a bit scared as it was only a 6 page “has anything changed” form and then we didn’t hear anything for weeks, but it’s been renewed again at the same rates so we don’t need to worry for now. My DLA to PIP transfer is in progress- we’ve now got the form that Johan needs to fill in. He says it’ll be easier than filling in his own, and he even managed the phone call to initiate it okay. We’re going for our usual tactic of sending tons of supporting evidence (mostly my care plans, where it says they’ll find me in bed both calls) and hope it goes smoothly.

As I’ve been doing better physically I have been out of bed a bit. I’ve been in the living room and to Newcastle (I went to the yarn shop! I bought yarn!). I saw Snow Dogs and they are awesome. I also went to the local park for the fireworks display and it was good, though people kept climbing over me while we were in the queue for food (we think they didn’t realise how long the chair was so thought there was a gap when there wasn’t). I wore my penguin onesie and was nice and warm. I’m definitely glad I managed to go, and hope to go next year. We’re planning on putting lights on my chair and skipping the food queues though πŸ™‚

I have a shower chair now so I’ve had two showers! Showers take a lot out of me and the chair isn’t quite supportive or padded enough but person from CFS team has suggested using towels to make it better and we’re going to try that. I am so glad that it’s here now though. The main thing stopping me using it is not being awake and well enough at the same time Johan is available to shower me.

Last week we finally got my new hoist slings with head support. I’ve tried them and they make it so much easier and mean my head no longer flops backwards and my neck doesn’t get sore! We’re not sure if one will fit in my normal going out changing bag, but if not I’ll just get a bigger one.

I saw mental health team. They can’t help me because I’m not at high enough risk. Blegh. I’m both glad that I’m not that ill mentally, and frustrated that they couldn’t help even with suggestions. Last night fireworks going off made me really out of it, but I was also able to describe what was going on to Johan (he was with me at the time). I think it’s the first time I’ve been able to do that, explain what’s going on in my brain while it’s happening, but I don’t know how to stop it and I was exhausted afterwards and slept all night then all day. That was not in the plan.

I went to the local hospital for a smear test and coil change. Was funny the first time I went as they didn’t know I’d be in a stretcher, most of the information they had was wrong, and they didn’t know where to put me. They figured it out though (they had a second waiting room that had a curtained off bit- they put me there with a guard nurse at the door) and the doctor took my smear. I went back a few weeks later for the smear to be repeated as the first one didn’t have enough cells, and this time the doctor changed my coil as well as he didn’t want me having to go back there again. The second time they had two rooms ready for me- one in case I could stay on the stretcher like the first time, and since I couldn’t (the ambulance guys needed it for other people) they kicked a doctor out of his office so I could go on the only bed in the department that lies flat. It wasn’t exactly fun, but the coil change went about as well as it could have and I was in less pain than the day before, so I appreciate that. My second smear came back normal so I don’t need to worry for 3 years now, and 5 years for the coil. I’ve been a bit crampy and moody since but hopefully that’ll calm down in the next few weeks.

I have a hospital appointment at the beginning of December about my dental surgery. It’s going to be at a further away hospital, which will be the furthest I’ve travelled in over 4 years. Hopefully it won’t take too much longer after that to have my broken teeth removed- one of them has had a temporary filling in for over a year.

I’ve been playing a lot of World of Warcraft since Legion came out. I’ve done all the current quest lines, got all three artifacts for my Priest, and am concentrating on levelling my Discipline one. I’m okay doing most World Quests, LFR and normal dungeons. I’m too scared to try heroic or mythic dungeons yet, though since I have a 853 item level I am geared enough. Part of the problem is that I don’t really know how to heal with the new Disc system- in LFR it doesn’t matter too much if I’m not sure what I’m doing as there are other healers, but in a dungeon I’m the only one. I’m considering learning Holy for it, but I think I need my brain to work better first. WoW is a lot of fun though, and I’m glad I’m able to spend a decent amount of time in it (mostly at night while Johan is asleep).

The biggest problem my cognitive issues is causing is I can’t initiate conversation now. I can know what I need to say and who I need to say it to, but without a prompt I just can’t do it, and I don’t know how to explain that. Replying to someone is easier but still really difficult, especially if I don’t know the person that well. I’m also muddling up or forgetting words and stuff much more these days, which if nothing else gives Johan something to laugh at (as he hears most of them). It’s so frustrating needing to do something but not actually being able to do it, even though I technically know how.

Johan is now very busy. He’s in Newcastle 3-4 times a week now, and he’s taken up running so does the 5k park runs most Saturday mornings, and goes to the gym when he can to do more running. If I’m asleep at the wrong times, I sometimes don’t see him for more than a few minutes while he sorts me out in between stuff and sleeping. Both the exercise and being out regularly is helping him a lot, and what he’s doing now might lead to a career in the future. I struggle quite a bit if I’m awake while he’s out, but it’s mostly feeling vulnerable- if something happens, I can’t do anything about it. It also means my pads leak more which isn’t fun. We’ve asked our social worker to change the call times so I’m not left alone for quite as long (the morning call moved to lunchtime so Johan can sort me out before he leaves then the carer can sort me out a few hours later) and also for the evening call to be made much later so I don’t need to cancel it whenever I’m able to go out. He’s put the request in but I don’t know how long it’ll take.

The agency finally stopped trying to send the bad carer in October. It took my social worker putting it in the contract not to send her before they’d stop. I’ve had several carers say they’d happily do those calls if asked, so it’s not that no-one wants to deal with me, but they kept insisting she was the only person available. I’ve still not heard anything about my official complaint (that I put in during July) so once everything else has calmed down we’ve got that to chase up. It’s the usual problems we’re having with the care agency now- most of the carers are lovely and do their best, but there’s a complete lack of organisation and communication, and I still don’t get rotas so get panicky every weekend as I don’t know who’s coming.

At some point I need to see my GP as my antiemetic has started causing tachycardia and palpitations, which stops me sleeping and is very uncomfortable. I can reduce my heart rate manually for a bit (by holding my breath and tensing my muscles- I discovered it myself years ago when I thought I was panicking but was actually having POTS attacks, and it turns out it’s an actual treatment) but it eventually goes back up and the palpitations stay. I’ve been on it for several years without problem so I’m really annoyed this has started now, as it was the third one I tried and I really like not vomiting. Hopefully we can fit it in around Johan being out all the time.

I’ve now written a blog post that’s too long for me to read. That’s probably a sign I should publish it. Hopefully there aren’t any massive mistakes in it.

Penguins Are Still The Best

It’s been a busy couple of months. I currently have an actual social worker, and he sorted out a care home (which went well) and is helping to try and sort out the care agency problems I’m having. They’re still sending that particular care worker that I can’t cope with, so I’m now panicking a lot and not having stuff I need doing done. My main care workers have complained, I put in an official complaint (which I’ve heard nothing about) and my social worker has complained, but they keep sending her. I’m not sure what to do as I’m spending all my energy on panicking instead of useful or fun stuff.

Johan went to Sweden and he had a very good time. I went into the care home I requested (as the previous one couldn’t take me due to renovation work) and though there were a few communication issues overall it went about as well as it could. I even managed two baths which was amazing! I managed to make a pair of slipper socks while in there, watched the ESA Marathon that Johan was in Sweden for, and went to a open day for the floor upstairs from where I was staying and stole two helium balloons. I also slept a lot and had to reassure the staff that was normal.

Since then I managed to go out for my sister’s birthday, which was the same day as our 6th wedding anniversary. We went for a meal in Newcastle which was nice. I had Chinese starters and a couple of desserts as I was too slow and full for a main πŸ™‚ It’s the first family event I’ve managed to make in a long time so I’m really happy I was able to go out for it.

I bought a Haribo cake for our anniversary, which we started yesterday. It is rather yummy and doesn’t have icing on that Johan doesn’t like, but does have sweets on top. Haribo Starmix are Johan’s favourite sweets at the moment, so it works well for both of us. 

Since I got home from the care home I’ve seen my social worker again, and have got dates for changing my coil and seeing the community mental health team. For the CMHT I got a bit worried when they said it was in a clinic, as I wasn’t sure I could manage talking for an hour and a half at the same time as sitting up (both use energy and mine is limited). Luckily they phoned Johan and told us that it was going to be at home so I don’t need to worry about not fainting in my chair, just on being able to manage an assessment for 90 minutes. I’m hoping they have some ideas on how to cope with stuff that affects me but I have no control over, because panicking and having meltdowns (they’re different) are both extremely exhausting even when you don’t have a chronic illness. 

The best thing that’s happened this month is seeing Sammie today πŸ™‚ She came over to bring me presents from her holiday and chatting to her is amazing, as is being able to cuddle her in real life. I’m so proud of how she’s doing so well. Johan worries about her, especially when she stays up past her bedtime. It’s quite funny how he’ll keep reminding us what time it is. She’s still growing and is visibly taller than Johan now. I don’t think it’ll be too much longer before she’s taller than me.

I enjoyed watching the Olympics when it was on. I mostly saw some of the artistic gymnastics as I wasn’t well enough to watch all I wanted to see, and I was really impressed by Simone Biles and how she flies through the air. I’m looking forward to the Paralympics and hoping to watch a lot of that. Just need to have the energy to manage it.

When I get on my computer I’m mostly playing World of Warcraft. I’ve pre-ordered the Collector’s Edition of Legion, and if I’m going to be awake and well enough for launch I’ll get the digital version so I can play immediately, but if I’m not I’ll wait until the box arrives. I’ve been enjoying doing the prelaunch invasions and quests, and hopefully I’ll figure out how to DPS heal as a discipline priest before I get too far in. Johan has been levelling loads of characters through invasions and he’s not sure which one will be his main, or his first to level 110.

On my tablet I’m mostly playing Minesweeper. It’s slower and a bit harder than on PC as you don’t have separate buttons for flagging and uncovering, but I’ve managed to get under 200 seconds on expert which makes me happy. I’m still playing most of my other mobile games but only in bits and pieces. I’m also reading a lot of Reddit when I’m not feeling up to much, as it doesn’t matter if I lose track of what I’m doing. I hope to get back to reading books when things calm down. I’m still happy though, and have many plans that I’m working on πŸ™‚

Blogging Against Disablism Day 2016: What I Want To See

This is a post for Blogging Against Disablism Day 2016. Please visit the website to see the other posts. It’s a day late as it’s my second attempt at a post (thanks brain fog).

These are things I want to see. It is not exhaustive.

I want to see more people like me in fiction, as normal characters. Disabled, different, maybe chronically ill, but that being only part of what the character is about.

I want to see more progress in making things accessible for more disabled people. More ramps, lifts, alternative formats for information. More changing places toilets (toilets with a hoist, adult changing bench, plenty of room for a wheelchair and carers and other facilities for severely disabled people). Less blocking access, displays making it impossible to pass in a wheelchair, less unnecessary noise and strobe lights.

I want to see disabled people accepted for who they are. Not used as inspiration porn or pitied. Disability is a normal part of life so should be treated as such.

I want less overt and covert discrimination against disabled people. Less refusal to make reasonable adjustments. Less making disabled people jump through hoops non-disabled people don’t have to do.

I want to see more access information provided on websites, and the websites themselves to be accessible. I want that information to be easy to find, not requiring looking through layers of menus to discover.

I want people to see disability equipment to be seen for what they are, tools that enable people to do what they want easier (or at all). Wheelchairs and scooters are awesome and allow so many people to do more than they otherwise could.

I want people to be valued for who they are, not what they’re able to do. We all deserve a full, peaceful, dignified life, making our own choices as much as able.

I want variable disabilities to be understood better. Just because someone can do something at one time, that doesn’t mean they can do it the next time, or in different circumstances, or more than once.

I want the harassment of disabled people to end, especially by governments and the media. I want benefits to be easier and quicker to claim, without the presumption that we’re all frauds. We’re not to blame for the financial crisis.

I want to see disabled people living where they want, with the help they need to do so. I want to see hospitals only used when absolutely required and for the shortest period that’s needed. I want carers to receive the help they need to care for their loved ones if they want to.

I want people to be seen as individuals. We all have our own life experiences, likes, dislikes and thoughts. We’re not just a collection of diagnoses.

I want to see a nicer, more equal world. I believe it’s possible.

Font Resize