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To just want one day pain free?

(25 Posts)
thinkingaboutfostering Wed 17-Aug-16 10:35:20

All I want is one day and night to be me again. Not doubled up in pain bleeding and cramping. I haven't had a good sleep in six weeks. Just keep being given stronger and stronger painkillers none of which seem to help just make me increasingly tired.

BewtySkoolDropowt Wed 17-Aug-16 10:42:44

YANBU, sounds hideous sad

Hope things ease for you.

Waltermittythesequel Wed 17-Aug-16 10:45:38

Is it endometriosis?

I have endo and pcos and it's hideous.

I feel your pain. Literally.

DameDiazepamTheDramaQueen Wed 17-Aug-16 10:45:40

That sounds rottensadflowers

Sparklesilverglitter Wed 17-Aug-16 10:46:23

Yanbu, sounds blooming awful 💐

thinkingaboutfostering Wed 17-Aug-16 10:55:42

They don't know what it is yet. On waiting lists for tests but could be weeks or months before they actually happen. Meanwhile the Drs are quite happy to prescribe morphine and leave me to it. confused

Waltermittythesequel Wed 17-Aug-16 11:31:03

From my own experience, it took over a year for a doctor to actually diagnose me properly. It was hellish.

I hope they get to the bottom of it soon. It's no way to live. flowers

thinkingaboutfostering Wed 17-Aug-16 12:43:12

I really hope it doesn't take a year to diagnoses. They seem a bit more on it at the min as there is a concern that I could have a tumour causing it.
I have pretty much lost my job now because of it. I was working for a home care company on a zero hours contract. They won't let me work till I'm off morphine so I buggered as that's unlikely to happen any time soon and whose going to want to employ someone in my situation

NothingIsOK Wed 17-Aug-16 13:14:09

Lots of empathy from me. Chronic pain is hard to live with.

If you haven't already, make sure you're on top of benefits... ESA if you're not working, PIP if it's long term.

Sleep problems can be managed by napping when you can during the day to make up lost hours or lost quality of sleep at night.

Try not to fight it all the time. Pain is exhausting, and it's OK to not do the stuff you would normally do.

thinkingaboutfostering Wed 17-Aug-16 16:22:34

I have no idea where to start in terms of benefits. All I want is for the pain to stop

Vickyyyy Wed 17-Aug-16 16:33:42

YANBU. its horrific. I can;t remember the last day I had where I didn't have at least a few hours (usually much more) or pain. My morphine was delivered this morning so I should have a few 'good' days until it runs out again though. I really feel for you...chronic pain is fucking awful and so many people don't understand if they have never been through it too.

Vickyyyy Wed 17-Aug-16 16:35:38

I am undiagnosed after 2 full years of this too. That sometimes seems even worse than the actual pain...if they knew what it was, they might possibly be able to fix it. All I have is blood tests that constantly show inflammation...nerve damage off a gallbladder operation that went wrong (wasn't my gallbladder causing it either...) and pain that sometimes makes me want to die for averagely 8-10 hours everyday, and most of the night too :S

thinkingaboutfostering Wed 17-Aug-16 16:51:32

The not knowing is doing my head in. The rational side of me says that if they thought that this was cancer they'd be doing something about it. The rest of me is scared shitless about it all. Very very few people in real life know that I'm ill so nobody to talk to about it

NothingIsOK Wed 17-Aug-16 23:05:23

I had 15 years undiagnosed. Really.

Re benefits, start with ESA. There are two kinds, contribution based and income based. If your employees have stopped paying you sick pay you should look at getting this. The conribution based one goes for up to a year.

thinkingaboutfostering Thu 18-Aug-16 00:30:15

Ive not been paid anything work said I'm not entitled to sick pay

Vickyyyy Thu 18-Aug-16 00:36:35

I assume this is expected to be long term as you are feeling this bad and still no diagnosis, I recommend applying for ESA. Sure your doctor will provide the necessary sick note. Why is your employer saying you are not entitled to sick pay? You MAY be able to backdate your ESA claim up to 3 months if you have had no income. ESA will mean that you are entitled to housing benefit (if renting) and council tax relief also.

FeralBeryl Thu 18-Aug-16 01:28:31

flowers
You poor thing. Ongoing acute pain is hideous. You gave my utmost sympathies.
I know it's the last thing you'll feel like doing but please keep on at the hospital to hurry things along. Have you been referred properly by your GP? Find out which consultant and call their secretary directly rather than appointments, they often have the authority to fit you in to a last minute cancellation slot etc.
Fingers crossed you're pain free soon.

thinkingaboutfostering Thu 18-Aug-16 13:10:06

I have an appointment in two weeks with the consultant. Feels like a lifetime away though. GP is useless a lot of the time and all local surgeries are oversubscribed so not taking on patients who already have a practice.

Just so completely fed up.

NothingIsOK Thu 18-Aug-16 15:48:29

ESA is what kicks in when statutory sick pay runs out or is not available to you. You can backdate it, but the sooner apply the less you will lose out on if you've been off work a long time.

Please ring them - Google apply for ESA for the number. The date you make the call is important so don't delay. Bear in mind that you have nothing to lose by applying, but a lot of potential loss if you don't.

Vickyyyy Thu 18-Aug-16 15:57:39

Good luck with the pain clinic. From my experience they have been no help though really for over a year, though they just switched me to another one who seems to actually care rather than get me in and out as soon as possible. They have discussed various medication changes and put into action a changing plan), discussed the fact that counseling may be useful to me, for the psychological side of dealing with constant pain..gave me a tens machine to try (though I had tried one myself and it didnt work)...physio has been offered also but wait list is long. Finally they told me that if all else fails, they would be willing to give me some kind of injection that just numbs the painful area that has to be redone every week or so. Doc described it as an epidural for the ribs lol. But that has to be a last resort as it can be dangerous apparently.

I know ESA won't seem priority right now as the pain is all you can think about, but please do try and sort this as soon as you can. Believe me it can be worse...when you are feeling just as shitty but also have to deal with eviction letters and stuff ontop of it..

thinkingaboutfostering Thu 18-Aug-16 16:14:41

It's a gyny appointment rather than pain clinic so I'm hoping that they might have some ideas at least. I have a tens machine which does help at times but not when I'm having a severe pain episode.
Fortunately I still love at home with family so I'm not at too much risk of not having anywhere to live ect. Had a meeting with work this morning but didn't get much conclusion from them. I won't be expecting any work from them anytime soon even though I think working would actually be good for me at the minute. I need a distraction as much as anything

Vickyyyy Thu 18-Aug-16 16:21:00

Sorry, I read it as pain consultant for some reason lol. The work situation is a bit weird though, have they given you no reason for refusing sickpay?

thinkingaboutfostering Thu 18-Aug-16 16:45:46

I'm on a zero hours contract. I'm not signed off they are just not giving me hours

OreosAreTasty Thu 18-Aug-16 17:09:11

Re; your job.
If you're on a 0hr contract but not getting any hours you are classed as unemployed for JSA purposes.
I'm unsure where you'd stand with ESA/DLA/PIP as its hard enough to get those when you are diagnosed.
sorry you're having a shit time sad xx

Vickyyyy Thu 18-Aug-16 17:21:15

ESA is easy enough to get to start with tbh. Though you do need backup from your GP, but this is only in the form of a sicknote, not an essay or anything.

The issues start when you get sent for your 'work capability assesment' and they (usually inevitably) cure you of all of your problems in the space of a 15 minute chat.

Its taking longer and longer for them to get to the assesment stage (possibly due to the number of successful tribunals and such that are blocking up the system) so you could get maybe 6 months or so before any problems actually start ESA wise. Assessment rate ESA is exactly the same as the JSA rate just without the JSA commitments (quite rightly if you are ill)

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