To think I am completely fucked if PIP changes happen?

[PIPsqueakybum]

I get standard rate PIP due to having CFS. I’ve had CFS for 10 years and at the moment I’m going through one of my ‘better’ phases, during the bad phases, which can last weeks or months, I am virtually bed bound, and although I manage my condition as much as possible through pacing, stress is a big factor in making it worse so one majorly stressful event and I’ll be back to square one. I am self employed and manage at the moment maybe 10 hours of work a week, which is better than no hours which is where I was for many years. This is in part due to finally winning my battle for PIP and being able to afford therapies which have helped me have at least some kind of a life.

To give you an idea of an average day (bearing in mind this is as good as my health gets), here’s what I did today:

7.30am woke up as usual feeling completely unrested, aching and like I’d been hit by a truck.

8.30am drove teenage DD to school. Already felt completely exhausted and had to stop at a garage on the way home for a rest and to buy a can of coke to try and wake myself up enough to drive home.

9.30am got home and got back into bed to rest, as I had a meeting at 1.30pm and I felt too tired to manage a conversation. Fell asleep for a couple of hours.

12.30pm got up, had a pot noodle for breakfast/lunch, as I didn’t have the energy to make anything else.

1.30pm met up with potential client, which went well and I have some work as a result of it, but was left completely wiped out by having to be ‘on’ for an hour.

2.30pm got back home, tried to do some jobs around the house but was too tired and went back to bed to rest and then slept for another hour.

6pm got up and put a pizza in the oven for tea.

7pm - now, rested in bed, aching all over and watched TV/zoned out for the evening.

This is a typical day, and I repeat this is as good as things get for me. The fact that I was able to get DD to school and go to a meeting is a HUGE improvement on where I was for years, but CFS is a fluctuating condition and I could very easily be back to being completely useless.

If the proposed PIP changes happen, I will lose my PIP, and ergo also lose the LCWRA element of UC. It was a long battle to get PIP and I don’t have any more than 2 points in any descriptor. I will then be on the basic rate of UC, and my self employment will not be seen as gainful so I will be expected to job search for 40 hours per week, and will be sanctioned and lose further money when I can’t do this. I honestly can’t do any more than I’m doing, and even what I am doing now is a struggle. I’m doomed aren’t I?

Can I ask what "exactly" caused the symptoms? I feel similar but am diagnosed with depression and I have had a cough 2 months that wont go away, but I understand the fatigue and the constant aches and pains.

And no I don’t always do it, usually about twice a week when I’m too exhausted my ex will take her in/pick her up. She has only been at the school a few weeks, and I knew by the time she started that the ECHP was in the pipeline, so driving her there wouldn’t be a long term thing. It’s already having a massive effect on me and what I’m able to do in a day.

@Arraminta and I can just picture the pile on if OP said there is the odd day her child doesn’t get to school, or goes late due to her not being able to take her.

I have already explained this in another post.

Some people try and use the spoons analogy. You have 10 spoons a day to spend (representing your energy budget). This is called pacing. This is what we do yo try and avoid a crash which is post exertional malaise disproportionately to the activity that triggers it. The activity could be physical, emotional or cognitive, or a combination.

Anyway, say that drive is the top priority. The child must attend school. Some days that drive costs 4 spoons. Some days it costs 8 spoons.

The rest of the day uses spoons on preparing food, eating/digesting food, personal hygiene, household chores, work, etc.

So if I run out of spoons, maybe I don't shower. Maybe I don't eat. I definitely don't clean the kitchen.

If @PIPsqueakybum spends all her spoons on work, then she can't do the drive. That drive is what has to come first. Everything else including eating is a compromise.

Every activity in MEcfs uses a disproportion amount of energy to a healthy person. My heart rate spikes when I eat and if I'm not doing well especially, it'll stay above 130bpm for hours even if I am sitting or lying down.

Honestly, I've had this illness for four years. I'm still learning. It's incredibly hard to manage and sometimes life throws things at you and you have to suck it up and pray you don't crash for days/weeks/months.

What you don't do, is push yourself beyond limits doing daily routine activities including work, or you'll end up bedbound laying in a dark room for most your life.

Oh and using 10 spoons as an example. Some people will have 1 or 2.

Any decent society needs to look after its disabled. There are people who are so chronically and seriously disabled that they need to be fully taken care of sometimes from cradle to grave and that absolutely should be fully supported.

It could be any of us.

But to balance that life is challenging for most people. If everyone who ever suffered from anxiety and depression decided they couldn’t work society would crumble.

There is a tipping point at which personal responsibility and accountability kick in. Saying you forget to take meds, consistently don’t eat properly etc isn’t good enough if you also expect the system to support that.

Well I'm happy to stand corrected, I must have misread and I apologise. But surely the DD should always take the alternative route to school allowing the OP to better harbour their limited energy?

The argument that the OP might sometimes choose to drive her DD because she enjoys spending that time together, isn't a luxury she can afford to have. She needs to spend her energy more wisely, with a view to longer term benefits. Use it to set up processes to make her and her DD's life easier.

Hundreds of thousands of parents would likely enjoy having the time to do the school run, and spend that time with their child. But they simply never can. Because they have to work.

You don't understand MEcfs

What else is the OP meant to do though? For example if she got a job in the NHS
3 sickness occasions in a year and she would be on a stage 1 and then they usually say no sickness for a yeat
Even a WFH job isn’t so flexible you can decide whether to work or not
But not just for her, where are all these flexible jobs that don’t care if you can’t come in or work maybe for weeks on end and will still pay you?

But that is life, we all juggle our spoons. Some people have more than others. One thing though that is the same for everyone is that good lifestyle optimises health.
So the better you treat your body, the better it responds.

I could sit and drink coke all day and eat pizza (not saying you do it everyday op), but I don't. I drink loads of water and eat fruit and veg because it makes me feel healthier and gives me some energy. If you have that as your baseline then you can cope with spoon fluctuations.

So how the fuck does my daughter get to school and back then? Trust me, there’s no part of me which enjoys having to do that drive twice a day, I can assure you it’s not being done for shits and gigs.

You really have no clue if you think it’s this simple:

But that is life, we all juggle our spoons. Some people have more than others.

So stress and then the flu. OK.

Not everyone’s baseline is the same though
I’m at a fatigue baseline no matter what I eat because my body is using all its energy killing off my white blood cells, attacking my thyroid and then dealing with severe gynae pain
I can’t improve any of that with eating fruit and drinking water
I eat relatively well, exercise when I can and mainline supplements. Does fuck all
it’s like when people tell me to try a multivitamin to improve my immune system

Ok. I give up. You don't know. You don't. And you're not going to try.

We don't all have MEcfs.

I would say someone who has no problem with tech etc and can post for long periods late at night should look for a wfh role, obviously online based. Plenty of people wfh there must be opportunities.

This is ridiculous, you are eating coke, pot noodle and pizza with the excuse that you can't do anymore! You are managing to post on here and reply so I am sure you could order an online shop.
You stopped at a garage to get the coke, could you not of got a sandwich? or fruit?
perhaps start eating 5 portions of fruit/ veg a day. It doesn't take alot of energy to eat grapes/ banana/ porridge instead of pot noodle. Lots of fruit is quick and easy to eat.
The brain fog - have you looked into menopause/ hrt? i had brain fog for years but the hrt has stopped this.
I am SURE that with better nutrition you will feel a lot better. Take some personal responsibility

I didn't start the spoon analogy, I was replying to someone who did

@MewithME
OP has an alternative of the DD's father doing the school run. He should reasonably be doing at least half of the school runs and preferably all of them. I also think OP should look at moving closer to the school or changing schools if this is going to be a long term issue as it clearly isn't sustainable to expend so many spoons on this journey and leave nothing undertaking essential activities in her life.

On MN you will notice a general frustration when people don't seem to want to help themselves. There is a passivity and helplessness to OP'a posts. She can't help having CFS but there is a lot in her life she can control. She doesn't really seem receptive to any of this though and would rather get angry when people offer suggestions.

Might have more sympathy if she tried it though

And that makes a difference, how? Just because you didn’t start it doesn’t change the fact that you don’t have a clue.

From personal experience I understand a lot of things.

It’s too easy to write off any criticism as you just don’t understand.

Go to any decent therapist etc the first thing they will all tell you is look after the physical.
As will any GP.

If you can make a pizza you can make a baked potato or eat a yougurt etc. And you take vitamins and get outside. And you try to get better.

I know a woman who supplements her income packing shelves with cleaning houses. She’s not particularly young, and I’m sure there are days she is bone tired.

This is true , but my ridicuously smart friend ( the youngest physician to qualify in or country) think its a load of shite. I feel I have all the symptoms. Who bloody knows ?

'I can’t improve any of that with eating fruit and drinking water'

You can improve much of that by hydration and vitamins which is what drinking water and eating well provides.

It isn't easy, no-one said it is but without a doubt improving lifestyle improves quality of life even when we have chronic illnesses.