It’s arrived!!!

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So my medical report from my assessment last Friday has arrived in the post today….

I was told that I wouldn’t have the decision from the DWP for possibly another 4 to 6 weeks… but from the indicators on the report… she has actually given me enough points for standard on both mobility an daily living…. making me potentially £152-00 a month worse off… that is if they actually go with her report recommendations….,

As you can imagine I’m upset about this situation… I mean they are supposed to be looking after disabled people… not pushing them into more hardship…. I wouldn’t say she has lied per-say but there are some omissions .. plus she has seriously not accounted for my condition…. the inability to do things repeatedly an reliably… she completely ignored my cognitive issues…

So I’m in that fun place waiting again…. let’s see how the DWP fair …. given this I feel is a cost cutting excise…. potentially they will save money on me …. well if I don’t fight for the proper award….

I’m not in any fit shape to deal with this …. why has it become my problem to prove I’m sick an need support….. why are they believed beyond doubt…. we should actually have something legally we can do to stop this bullying behaviour… it’s all based on fear….. how the hell is ok to bully sick people ….

I’m to tired for all this …. an to sick …

Watch this space.. love an light .. ❤️

Thank you so much for following my journey.. I know I’m not alone x

My Medical Report…..

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So I rang the DWP….. I nearly gave up on the process….. 20 minutes on hold listening to Vivaldi’s 4 Seasons….. enough to make you give up the will to live …..

But I was in for a treat…. the gentleman I spoke to was clearly extremely efficient…. he also had a lovely accent…. he was absolutely an advertisement for how one should be treated….. he told me he had actually received my assessment….plus he was going to print it out and send it to me….. he actually kept me on hold for approximately 3min while he went and collected said report…. he then checked it to make sure it was all printed ok….. he explained what exactly would happen next plus how long it was until the decision…. he assures me it would probably be less than 4 -6 weeks….. plus that the report was only guidelines….. not sure if that good or bad…… it’s also slightly weird to note that I can see the report before the DWP has made their decision….

Anyhoo…. I’m resting up as I can do no more at present…..

Eternally grateful for how I’ve been treated so far…. the report itself will take a few days to arrive…. so just going to wait and see ….

Patience is a virtue…. gawd I need this to be sorted…

Love and light… thank you for listening xxx ❤️

So I had my assessment!!!!

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That’s how I feel….. as I only had less than 48hrs noticed…. it wasn’t really a problem because it’s not like I have a full social calendar…lol ..

The lady who arrived at 11-45am was genuinely nice…. she was understanding and seemed to be knowledgeable about my condition… plus how it impacts my daily life…. she was with me just under an hour…. I had no physical examination as I was in enough pain…. plus my energy at the end of the assessment was apparently clearly depleted….

I’ve had to rest considerably after the massive use of my energy…. this is day 4…. my next job is to get the medical report… then wait six weeks for the decision to be made ….

To say it’s stressful is an understatement…. I’m not well enough to go into battle…. let’s hope it’s a good decision…. resting because I can’t actually do anything else ….

Love and light … many thanks for reading my ramblings ❤️

The phone rang!!!

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Update time ….. so my phone rang just after lunch today…. it was to ask if I could be available for my home PIP assessment on Friday…. as usual I was Monday mode …. so thought that’s fine …. not like I’ve got anything on my busy schedule… I checked my diary… all clear…

plenty of time to rake through my life …. so I said yes it’s fine … but just need to write down details as I’ve a memory like a goldfish….. so Friday… plus name of person calling…. plus what I need to prove who I am … so asked if blue badge was appropriate as it’s got my picture on … yup that’s ok…. plus need something with my address on … lots of letters from the DWP….

Oh yes telephone number if I need to ring them for any reason…. all written down… unfortunately I’m a bit sketchy on the old appointment time …. so I’m going with middle of the day …

the chap I spoke to was very polite and helpful… as I’ve said all the contact has been good… it wasn’t until I put the phone down did I realise it was Wednesday… so less than 48 hours notice…. not a problem actually….

Plus I realised they had given me a home assessment… another plus point….

I wasn’t going to do this blog until after my assessment… but thought it might be better to do this now…. this process is having a detrimental effect on me …. I’m just going to tell it how it is …. but it’s taking valuable energy… Friday is going to be hard work… just the process of answering questions is draining…. what a shame we have a system that is causing extra stress….

I’m ok …. just my health hasn’t been great for quite a while… so we will see how things go…. I did want to ask about recording it…. but given my fluffy brain I forgot to ask…. well it will be what it will be…. I will update with how it goes…

Trying hard not to get sucked up in the “oh fuck feeling ” just rolling my sleeves up…. hopefully they will have an understanding of https://me-pedia.org/wiki/ME/CFS we can but hope ….

So back to resting… love an light… thank you for listening …. ❤️

How very strange!!!

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It’s getting a little weird… this mornings post …. a letter dated 24th August stating they haven’t received my form arrived on the 31st August…. saying I can have an extra 14 days to send my form back to them …. it was posted on Thursday 29th August…. my date for the form to be back was the 5th September….

I must admit I still felt a little sick as the envelope dropped on the floor… knowing that they couldn’t have been that quick making a decision…. but the thought crossed my mind this could be the start of them reassessing my ESA… another battle I’m sure is just around the corner…. how is this even a possibility… that we have people who are so sick but who are constantly put under this type of pressure…. why have we got a system that is dehumanising ..,

I am going to be absolutely honest with you… I’m finding this so hard… I actually felt some relief after the form was posted … thinking I can do no more it’s in their hands now….. but I know this process is long and drawn out…. plus some people’s accounts of how they have finally sorted it out only to be reassessed immediately after so the battle started again….

I suppose I should be thankful… I mean they gave me an extra 14 days and I didn’t even ask for it….

Given it’s gone second class post I think it might have been a good call on their part…. (sarcasm is on high setting today)

I don’t think that all who work for the DWP are cruel or unfeeling… I can’t imagine how hard it must be at times… because it’s a job they have families and homes to support…. I’ve in truth.. always been treated with respect and compassion… I’ve had help and support… but because this process is so badly designed it causes harm…. a great deal of harm….

Suicide rates are significantly higher… hardship because you are so sick you can’t work seems such a punitive measure… remembering if you are sick an disabled it wasn’t a lifestyle choice…. money means the difference between surviving an having a life or no life …. are we really going to treat people so badly….

I’m going to keep telling you all how this is affecting me… because we have thousands like me … who don’t have anyone listening to them … if this helps one person to not feel alone… then it’s been worth my valuable time and energy sharing it with you all… thank you for listening..

Love and light ❤️

So time to give the brown envelope back… let’s see how they like it !!! 😉

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Phew … it’s on it’s way back to the powers that be……

This has been a difficult task… one I couldn’t tackle alone…. plus it would seem my body didn’t want to play ball…. weather this was coincidental or a unfortunate occurrence I don’t know…. but on Saturday I spent a considerable time on the floor… not totally sure what happened… it could have been down to trying LDN… but it also could have been down to the ridiculous process of changing from a lifetime award of DLA to PIP….

I know this is nothing new…. we all have to endure the system…. but can we not try to treat people with respect… the form is completely not fit for purpose…. well I’ve not filled it with reams of supporting evidence… I don’t have any… I don’t see any specialist…. because they can’t do anything… I don’t actually see my doctor because she can’t do anything…. I don’t really see anyone much at all…. apart from my online friends…. who totally understand this illness….

So now we wait for the next step…. that will be the we want you to come for an assessment…. but I did state that I’m mostly housebound… so a home assessment is necessary….. I wonder if my disability will be taken into account… I wait with wonderment….

It’s out of my hands now…. a sense of slight relief is a welcome feeling…. but I’m sure that’s probably not going to last long ….

Will write more when I have news…. this process isn’t going to be quick… I have my fingers crossed that the postal system will deliver said brown envelope…. on a point of principle I will not pay for sending it…. so it’s in the hands of others now…..

Thank you for being with me on this journey…. Love an light ❤️

Burnt out…. !!!

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I’ve spent the past week struggling with reading through the new PIP application…. yet another week of feeling sick to the pit of my stomach… you ask why?… so here it is ….

I have had to look over the details of my every day limitations of my life …. (not easy ) see how I can answer the endless questions….. when in my head I’m screaming…. this isn’t a bloody life…. it’s a half life … maybe not even that..

How do I explain that every single process takes my energy…. so much so I run out of energy for the basic tasks… I don’t want or need pity ….. I don’t want to look over my life and feel more inadequate ….worthless…. but this process makes you feel like that…. when I said it is dehumanising it truly is…..

I want everyone to know just how abhorrent this process is….

Thankfully my daughter is helping me..(Tink is an angel) …. so her clear concise answers are a welcome help…. we will together give the DWP what they deem a necessity…. I really would like to scrawl across the form nothing has changed….I’m still sick…. I still need support…. but I fear that wouldn’t work…

So I’m going to comply with the requirements….. even though it will definitely make me sicker….

On a plus point I had my hair done and nails painted…so looking absobloodylutly fabulous darlings …..

Thank you for reading… the next fun packed instalment soonish… love an light ❤️h

So it’s arrived… another brown envelope!!!!

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It’s Monday morning post… the forms have arrived… I’m going through the process of changing from a lifetime award of DLA to the new benefit PIP …. 40 pages of questions… all to help them to decide if you need financial help to live ….

I am at this point unable to understand how filling this in will actually help them to understand how I live …. the form is so bias and inadequate for its purpose ….

I’ve been reading some personal stories about the process they have endured… unbelievably heartbreaking… I have to wonder why we have such a punitive system for sick an disabled people…

I’ve realised that going through how I manage to live day to day just focusing on what I can’t do makes me feel pretty bad…. I’ve had years to come up with short cuts to daily living…. now I have to go the process of breaking down my life to jump through hoops …. I’m already struggling just reading through the form …

The postmark was 5th August… it arrived on the 12th August…. I have to have it back in by 5th September…. well actually before that plus the envelope is 2nd class post … so you can probably trim of three days minimum for that …. all additional pressure…

It will get done…

I’ve just realised that my Saturday update wasn’t actually published… so it’s just been done… oh dear this probably won’t get published for a week… as you can tell cognitive issues already in full foggy swing ….

I think I would rather do anything else than this…. sustained stress isn’t good for anyone.. least of all someone who is so sick … this is the point I really could do with a magic wand… given so many people have wished me good luck in this …. I’m a tad concerned…. really should this be down to luck …?

Awaiting some divine intervention… maybe I need chocolate… do you think it might help … thank you for reading my ramblings..

Love and light xxx

Impending doom !!!!

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So Saturday arrived… nothing in the post… but sadly I woke with a migraine.. (deep joy) I don’t get them very often… but this was a bit of a hum dinger…

I’ve realised that my usual calm way with dealing with things is starting to crumble… my condition (Myalgic Encephalomyelitis ) doesn’t respond well to stress….

So I’m trying distraction tactics… but my mind isn’t playing ball… overthinking the implications this process will have on my already fragile health is taking its toll …

because it’s Sunday I’m taking a day off and watching some humour on the TV… tomorrow is another day ..

love and light xxxx