Forum

I can't take much more of this ...

Skip to here: 5 paragraphs down if you don’t want the sob story.

My MS has been confirmed. I did not expect a diagnosis of MS but the spinal tap, the bloods and the scans all say it is MS. I thought I was going up against something that an operation or proper physio would help or at least alleviate my symptoms. On top of this I only eat once a day. I also have “significantly delayed gastric emptying time” aka gastro-peresis.

It has taken me a total of 17 years (minimum this summer) to actually get a diagnosis and in that time, well if you call a person crazy for long enough and that they will become crazy -or at least sit on the edge of it to see what happens when you dance to that tune.

I am taking my time dealing with this ‘news’, I have vented much on this forum and right now I have my crosshairs on my next door neighbour that flooded me and will not even claim their house insurance to fix the £1000 of damage they caused.

But all that (and more) is not what has me over the brink of crazy again.

Skip to here.

I have applied for PIP. I got a very-very quick assessment date (within 3 weeks I think). I then got an even quicker reply that I did not meet the criteria.

I phoned up to ask what to do and I am getting a mandatory re-assessment (I think). I was asked if I had sent anything in because it had arrived after the decision.

No I hadn’t. What was sent in AFTER the decision was made?

Turns out it is the information from my GP confirming my diagnoses etc.

At first with the pace it was moving at I actually thought I was lucky. Now it turns out I was rushed and coincidentally it was not within even the minimum timeframe, it was quicker and therefore my GP didn’t have time to reply.

On top of that neurologists and gastroenterologists are even more burdened with work and have an even more finite amount of time to reply to the DWP.

Is it just me or … WHAT THE HELL!!!

The Tories are talking about saving money and here we have this on top of all the money spent on tribunals? By the way the Tories cuts do not affect me so that is not why I bring them into this.

This is the second time the DWP has made a decision on me, apparently I fall 2 points short -but actually score 13 when I read the criteria and 15 in every mock test, and they made their decision without even getting information from a single doctor.

The last time I lost because A) they claimed to have phoned me twice when they had not as none were logged, B) Because they simply did not ask a single doctor C) I was actually too ill to make the tribunal and I lost by default then after an EIGHT MONTH DELAY IN THE DWP RESPONSE, I gave up. I was simply too taxed to keep going.

So to boil it down … I woke up at 00:30, because after I spoke to the DWP it just took the wind out of me. I don’t have a sleeping pattern as it is, but this just made twice as bad.

Am I expecting too much from people to do their jobs? I can reflect on all my skills and talents, which are pretty much useless now without a decent body to use them, but …

Several gastroenterologists failed to diagnose gastro-peresis for the sake of a simple test and several neurologists failed to diagnose MS for the sake of a simple test (and I have a Social Worker that is supposed to help people with a 14 foot hedge blocking our light and who has flooded us and took part of our garden as a next door neighbour). Hmmm, maybe I should vent my anger at them in a more public way.

Now I have the DWP trying to screw me by basically saying the information was not available, my word wasnt good enough, they haven’t bothered to tick all the boxes and they haven’t bothered to wait for replies from doctors/specialists.

I mean, technically you could say it is right … if the DWP say it did not have the information and did not base their judgment on it. Oh-man, seriously? Is this my life now?

And now I am even more annoyed because typing this has reminded me that I keep hitting the wrong keys.

Is the idea just to keep annoying us till we snap and commit suicide or end up in prison? I mean at least in prison you get your meals. It is against human rights not to feed prisoners, however, dead people don’ need benefits and sick people don’t need help if it can be justified.

I suppose to them it is ok I have not seen a single family member in 16 days simply because there are too many concessions I need to make that realistically I cannot afford.

It is cheaper (and affordable) for them to go to my wife’s parents by the beach and for me to order in food, when I can remember or like last night waking up at 00:30 and not being able to, than it is for me to go with them. My oldest is 13 in September and I have never been on a holiday with them.

They even went to Alton Towers a few years ago, grandparents, my wife and kids. I got to see the pictures.

Rant over.

Golly, a good rant. Well done. Sometimes it’s all we can do, just to vent all the negative cr*p out. I have no words of wisdom or advice to offer, just , I hope it feels better sometime soon.

Sue

Good grief, that was a good rant and your frustration is blindingly obvious. Better you got the stress out here than taking it out on people nearby, though. You don’t have to live with any of us…! Just get it out of the system, feel better for doing it, and carry on… all we can do really, any of us. This site is great for actually being able to let off a bit of steam about stuff, and knowing that everyone else will understand a bit more about the problems you’re facing.

You appeal the decision or was this the decision of your last appeal lol i got a bit mixed up in your rant lol, it doesnt take me much lol.

It gives you plenty of time to do that and yes go to tribunial and kick someones arse. Just appeal AGAIN dont give in besides which it gives you something to do lol and might save your neighbour from being at the end of a real rant ha ha.

Seems you are ranting not only at the DWP but everyone around you too. You make your own cage or prison in life. I am a bit similar to you in some respects. I am 64 and i rarely see my family i rely on my PA from direct payments to take me out. My husband has COPD so we are both sick. I could go out more but i find my home my sanctuary.

It took me years of being ill like you to get diagnosis, now I have 3 rare ones LOL…perhaps we have to be careful what we wish for lol. Co infection of Lymes (Erichilosis), MS (given grudgingly because of my age lol), and now transient epileptic amnesia, where i have periods of nothing no memories made and occasional wake up in hospital having spaced out for 6 or 8 hours freaky or what.

So why didnt you go to alton towers, why do you stay at home all day? If your so bad you cant do things, have you had an OT assessment? There is help out there in the form of adult social services and direct payments etc. If you can go to pictures why couldnt you go with your family? You say you have a social worker so cant they do a care assessment for you etc?

What concession do you need to make to see your family and why cant they come to you?

I think ranting is good for the soul anyway. I found it a bit hard to read your rant but i got the gist of it i think.

LIFE sucks sadly i have felt like giving up so many times trying to get a diagnosis but i kept going, and i must say i have nothing but praise for all the help i have received, doctors, DWP (YES sadly i have to say they were great with me on my DLA application, their doctor was fab and i got mine without a diagnosis), the O.T., the social services all my dealings with these people has been FABULOUS)…THEY all work under tremendous strain themselves and they are way overworked I would not want to do their jobs for no amount of money.

I hope you feel better when you wake up lol… theres lots of good stuff out there to still enjoy i do everyday, even if its just sitting in my garden watching the world go by at least i can see it go by lol…

Big hugs if i am allowed from an old lady pensioner who feels your pain.