CHRONIC PAIN - share your moans and achievements

[doadeer]

Hello,

This thread is to share the day to day... The moans, rants, fears, anger of day to day living with pain... And let's be positive where we can too... Little or big achievements.

I've had a tough day with my grumpy toddler who is obsessed with biting, he made my shoulder bleed today 😢

On the plus side, had a great pilates class and managed some tricky stuff despite feeling exhausted... I couldn't have done it unless my teacher was on Zoom telling me to hold it!

Yes worth a go at this stage. Still trying get sky installed supposed to have 3rd appointment on Friday but looks like have cancel as no one been touch. Have till 10am tomorrow or else it’s £25 to cancel Thursday or Friday. It’s beyond! I emailed them saying this is the 7th email I’ve sent in 5 weeks please can someone get back to me. That’s not outrageous requests surely.

The disabled toilet thread is boiling my piss right now!

I read first page and gave up. After the bus one I can’t cope. Same old same old Accessible loo for Disabled people and everyone else who need you them because no one wants campaign for loo for parents because you happy use accessible loo for few years then not your problem.

I remember once in BHS had one accessible changing room that family was using. Despite no one else being in 15 lady cubicles on the same hallway so easily go down end and have room from pram.
After about 15min waiting I gave up and took myself down to end cubicle. Parked wheelchair outside and swung self across. The sales assistant was OUTRAGED with me!!

I sat there taking my trousers off asked if she would mind giving me some privacy. But you have to use accessible she told me! Quickly tried on trousers didn’t fit and left.

Seems she more outraged I had get changed with anyone walking passed than fact family who could used cubicles hogged accessible room.

Yep don't read any more. We are all selfish ableists apparently.

Mumsnet is a shitter sometimes x

CBD oil arrived just taken some. Is it supposed taste like you have licked an ash tray?

@Akire

CBD oil arrived just taken some. Is it supposed taste like you have licked an ash tray?

Haha some of them do! Mine doesn't though, it's actually quite sweet

You do get used to the taste!

Do feel more relaxed. Didn’t like numb throat feeling felt like asthma attack. Had few funny turns at dentist when back off throat is numb maybe that’s why. Wasn’t actually asthma attack. Think take in water next time see if stops that.

How often do you guys take it. This is 6000mg apparently

I have 2-3 drops every night about half an hour before bed. Like I say mine is very strong though. It totally knocks me out for a good few hours until I start waking at 3am with the bloody pains!

Ooh good news. GP is increasing my Amitryptaline dosage!

Thanks will try again tonight. Just had cry so fed up being in pain. When one thing settles down up pops another body part screaming. Just want one day off.

Anyone can do pain for few days or weeks but mentally so hard over the years.

I slept a lot better last night with the increased meds. I only woke up once about 4ish but managed to get back to sleep pretty quickly.

Pain is back this morning though. It's bloody relentless!

How are we all? I’ve @doadeer asking if wants start new thread but I will of this gets much fuller.

I took in water last night much better. Finally had reply from Housing association that I send on 27th July asking if issue was resolved. So I replied (my 8th email) saying no still not got anywhere. 3h ago so of course no reply!

Did you sleep any better after the CBD @Akire ?

Still put on sleeping front but does help me relax. Guess better for me than alcohol right? Trying stop that as use to much for pain relief and bad habit. But in absence of anything else only sounds much you can do.

I got a copy of the letter from the consultant to my GP saying that I would be reviewed 3-4 weeks after my appointment 3 weeks ago, I rang the surgery to tell them about the problems I am having getting an appointment and they don’t think they can do anything to help.

I have emailed PALS again, but as they haven’t replied either to acknowledge that the person they forwarded my email to hadn’t responded, I am not sure I am any further forward.

It’s never ending isn’t it. Is it for meds review or progress? Surely 5min phone call at least. Why eat you have procedure if no room for proper after care that’s just negligent.

On other note on Twitter saw link to the accessible loo v parent and pens on some local ish paper and when clicked had another MN thread I’d read. I know Daily Fail often pick up “news” but wasn’t expecting local papers. I’m glad I didn’t waste my effort joining in.

Still no news on wheelchair repair. He told me it’s safe to drive but sounds like I’m dragging heavy furniture around. But they don’t know I’m Not going out so would need book time for them come. So my Moneys on next Monday and man was to much chicken to tell me to my face!

I need an X Ray to make sure the bones have healed enough to be able to weight bear without the special shoe, there seems to be nobody available across at least 4 sites to review an X Ray.

There always seems to be something to chase, my GP put me on Mirtazpine for my fibromyalgia in February and keeps issuing only one month at a time so I have to request it in between my other repeats, even though I have requested for it to be synchronised at least 3 times.

I think you are right about the repair man not wanting to give you bad news, I think it is the same with the hospital, the service the NHS is offering is not fit for purpose and they know that some people will be angry. Sorry to hear they are taking so long to mend it.

Morning all had a good sleep but still no news on the repair front. It’s a bloody wheel I mean if you provide wheelchairs very least you need to do is have basic parts for chairs you provide that otherwise would leave people stuck in bed 24/7 it’s not some
Luxury service they are providing.

Finally heard back housing association community officer who’s job it is to look after individual estates on their patch. She’s visiting block a week on Friday! Then will email me… or you know you could knock on my door?!

Had no TV or half radio for 2months now I’m not really asking the earth. Even if she does find right cupboard will she be able open it again for my 4th appt on 31st Aug? I’m sure it be quicker just buy a drill and find way open a cupboard myself.

There are such horrid housing association. We pay loads in service charges it’s not like a free service. Yet repairs take forever no anti social behaviour action just goes on and on!!

@Akire Is there no one to complain too. But rubbish having no TV or radio access.

On the pain front my shoulder is getting better slowly but surely. Which makes me so happy, that it should be gone soon. Hurrahm

So I only have temporary shoulder pain, intermittent side abdominal pain and general nerve pain in my legs.

I am hopeing my consultant will figure out the abdominal pain biylt. The hospital.neuro nurse told me to email the consultant secretary to tell them about it. As he might be able to sort it out before my next appointment. Fingers crossed.

So writing the email is top of my to do list tomorrow.

To rub salt into wounds got a 10 page colour brochure with the community officer posing on 5 full colour pages then 5 quotes saying what amazing job they do.. yes less fancy pants stuff more answering emails quicker than 6 weeks would be good. Still have wait another 6 days till they visit and email me
After!! Though tempted to stalk them when arrive in building. Says a lot when community officer dare not knock on your door. I’ve been around putti my up sticky notices today for various anti social behaviour that no doubt I shall get in more trouble for than dangerous behaviour because that’s how it rolls. Only wins are easy targets.

Still in lot of stomach pain still. Really getting me down. Drastically cut down diet and food groups although better still feels
Like someone jumped on stomach and sore. How many times can you go to
gps and be told what you don’t have wrong?
Doesn’t tick any
Boxes don’t feel bloated or sick not all day on loo but somethings is not right. Feel like after 10plus years of chronic pain I was just about dealing with this is now
Last straw and beyond a bloody joke. Very sad.

On plus side least we know have this group to let off steam!

How is everyone feeling this morning? I think I'm sleeping a little better on the increased amitryptaline dosage. Although still have the constant 24/7 burning pains and pins and needles in my ankles and feet.

Neuro rehab have given me lots of core strengthening exercises to do twice a day so let's see if I can walk any better soon! I dream of being able to stand and walk around the house without this stupid annoying frame.

Other good news - the hot tub is installed and warming up. DH just needs to get the chemical balance right and then I can get in! So looking forward to it. Warm water massively helps with my pain levels so I think this is going to be a worthwhile investment! Still haven't fully worked out how I get in and out yet but I'm sure DH and eldest DD can help me!

Have a peaceful Monday x

That sounds something looking forward too!
Waiting hear about my chair fix ha. Will give them till midday to reply email my email then risk the-one hour on hold on phone.

Keeping everything crossed for you!! I can't believe they have left you waiting this long! It's disgusting.