Why I Say ‘I’m OK’ Despite Chronic Pain

“I’m in terrible pain all the time, but I don’t want you to feel awkward” Why I Say ‘I’m OK’ Despite #ChronicPain https://t.co/ozCshT4Kjw

— Princess, The Tower (@APainPrincess) June 19, 2017

 

The Consultation...

My housemate came with me to my appointment as although I was ok about it Friday & yesterday, this morning I was a little anxious. We arrive 10 minutes early, we'd barely sat down in the waiting room when I was called through.

I had downloaded a dictaphone app for my phone to record the appointment as I have them memory of a goldfish! I'd like to blame the painkillers but I've always been an "airhead" :-D

I asked the consultant if I could record the appointment and his response was "go ahead dear". He was lovely, very to the point but with a gentle manner. I instantly felt like I could trust him. There just seems to be something about him.
He had read the MRI report I'd emailed to his secretary. The key points he said during the appointment are:

"Nobody can give you a new back, nobody can give you a new disc and nobody can give you a new nerve."

"We can trim the disc to take the pressure off the nerve. It’s a repair not a cure. It carries risks."

"If the pain is getting better then don’t have the surgery, if it isn’t getting better or if it's getting worse then think about having the surgery. Both having or not having the surgery carries the same risk of paralysis due to the pressure on your spinal cord."

"If you are happy to proceed with surgery it will be a L4/L5 decompression surgery and trim the disc. Again it is a repair not cure. Your back will always be problematic. If the nerves are too damaged it will not relieve the pain."

I opted for the surgery. My back is getting worse, I need some relief and it makes sense to try to take the pressure off the nerves. There is a chance surgery will help to relieve the pain. Not having the surgery will leave me in agony.

I am now on his list. I'm not sure how long it will be before my surgery. He gave me the number for his secretary to call a week tomorrow as she's on annual leave. I've got to give her my MRI scan disc. He didn't want to take it in the appointment and I can then discuss getting onto a cancellations list if there is one.

The sooner I get this done the better. In the meantime I need to manage the pain with painkillers.

On an emotional level, I am both relieved and upset. I knew how bad it was but hearing it from a consultant makes it "real". I'm relieved because I know what I'm facing longterm so now I can get my head down and get on with it.

I am extremely lucky to have three close friends who have had similar surgeries and am a member of several support groups on Facebook. Along with family & friends I have plenty of support. For that I will always be grateful.

#spine pain warrior  #sciatic pain  #sciatica sucks  #sciatica  #sciatic discomfort  #sciatic nerve  #nerve pain  #back pain  #lower back pain  #chronic pain  #chronic back pain  #bulging disc  #degenerated disc  #spoonie  #MRI report  #results  #nhs  #neurosurgeon  #neurosurgeon appointment  #university hospital coventry and warwickshire  #walsgrave hospital  #uhcw  #decompression surgery  #neurosurgery  #surgery  #trim bulging disc  #permanent back problems  #no cure only repair  #risk of paralysis  #anxious  #nervous  #relieved  #family  #friends  #support  #support network

SMS Confirmation :-)

Got this this morning!

#spine pain warrior  #sciatic pain  #sciatica sucks  #sciatica  #sciatic discomfort  #sciatic nerve  #nerve pain  #back pain  #lower back pain  #chronic pain  #chronic back pain  #bulging disc  #degenerated disc  #spoonie  #neurosurgical referral  #neurosurgeon appointment  #nhs  #SMS  #SMS reminder  #cancellation  #anxious  #nervous  #excited  #relieved  #nhs  #neurosurgeon  #neurosurgeon appointment  #surprise 

A Surprise!

I just had a call from the consultants secretary asking if I can make weekend appointments. I told her I could, to get cancellations you need to be a flexible as possible. Then she said can you attend an appointment on Sunday at 9:20am! I was genuinely shocked. I nearly bit her hand off!! I can indeed I told her. Then she confirmed I’d be seeing the consultant at 9:20am on Sunday 18th of June!

You could’ve knocked me over with a feather. I was so happy I cried. My original appointment was for 31st of August 2017.

I am excited, a little nervous and over all relieved as I want this pain to be sorted ASAP.

#spine pain warrior  #sciatic pain  #sciatica sucks  #sciatica  #sciatic discomfort  #sciatic nerve  #nerve pain  #back pain  #lower back pain  #chronic pain  #chronic back pain  #bulging disc  #degenerated disc  #spoonie #anxious  #nervous  #excited  #relieved  #neurosurgeon appointment  #university hospital coventry and warwickshire  #walsgrave hospital  #uhcw  #cancellation 

No Shame in Asking for Help

Did you know that if you text 741741 when you are feeling depressed, suicidal, or just needing someone to talk to, a crisis counselor will text with you? It is not weak to ask for help. Everybody needs it from time to time.
Don’t ever ever be afraid or embarrassed to reach out to someone.

It’s a free service.

Please don’t suffer alone xx

#suicide helpline  #No shame asking for help  #you are not alone

Assumptions

theconcealedweapon:

If someone can lift 100 pounds, would you expect them to carry it with them everywhere they go?
If someone can sprint 20 miles per hour, would you expect them to be able to maintain that speed for a long distance?
Of course you wouldn’t. Being able to do something does not mean that you can do it for a long period of time.
So if a wheelchair user can stand to reach something or walk a short distance, why do you assume they don’t need the wheelchair?

#tumblr reblog 

How to Hold and Use a Cane Correctly

Having had to buy a walking stick a friend sent me this link as I’ve got no idea how to use one correctly. I think it’s too useful to keep to myself x

How to Hold and Use a Cane Correctly

#spine pain warrior  #sciatic pain  #sciatica sucks  #sciatica  #sciatic discomfort  #sciatic nerve  #nerve pain  #back pain  #lower back pain  #chronic pain  #chronic back pain  #bulging disc  #degenerated disc  #spoonie  #how to use a cane  #show to use a walking stick  #show to  #cane  #walking stick

Pain Assault

Source: painmanagementprincess

#tumblr reblog

Oh What a Night :-(

So, last night I “slept” using my new body (U) pillow. Yesterday morning I had to take my disabled Mum to A&E (she’s ok) so had to lift her wheelchair in and out of my car. My back was most displeased and was not shy in letting me know how much I had pissed it off.

I used my icepack as much as possible, had a nap and took my painkillers at the right times for the rest of the day.

Then I went to bed. I got myself snuggled into the body pillow and swiftly fell asleep. My back decided that this was a good time to remind me how much I’d pissed it off during the day. Every hour or so I woke up with a pain in my right hip/buttock, similar to sciatic pain but not affecting my right leg. I had to get myself to off bed and walk it off. It was not cramp. I can’t lay on my left side as that it the bad side. I can’t lay on my back because it is absolute agony, even with support under my knees. I spent most of the night awake pleading with my body to let me get some sleep.

I have written last night off as first test night for the body pillow. My back is still very, very angry and I keep feeling like I need a wee, so I’m not sure how tonight is going to go. I just hope the rest I’ve had today will appease the demons and let me get and good nights sleep.

#spine pain warrior  #sciatic pain  #sciatica sucks  #sciatica  #sciatic discomfort  #sciatic nerve  #nerve pain  #back pain  #lower back pain  #chronic pain  #chronic back pain  #bulging disc  #degenerated disc  #spoonie  #university hospital coventry and warwickshire  #walsgrave hospital  #uhcw  #body pillow  #u pillow  #nhs  #angry back  #exhausted  #lack of sleep  #tired  #my body is evil  #painkillers  #ice gel pack #a&e  #accident and emergency  #hospital  #fed up 

Why I Love Marvel.

ricewolf:

When I was 4, I was the only kid in my class without a dad. I saw Iron man become a millionaire and genius with deceased parents. I knew I was going to be okay.

When I was 5, I was too shy to make real friends, but I saw Rogue battle her anxiety around people. I was strong enough to ask Ryan to play football with me.

When I was 10, I was being relentlessly bullied for being a maths and science junky, but I watched Peter Parker own it and make it his trademark.

When I was 14, I was one of the only brown people in my class. I saw Black Panther slay with the melanin so severely that it didn’t matter.

When I was 15, 16 and 17, I was on a cancer ward bed being pumped full of chemo, watching my hair fall out in chunks and knowing that I had more chance of dying than surviving. Deadpool came out. I fought. I won.

Now I’m 18. I’m struggling with depression, but I’m watching Wolverine battle his demons. I have medical ptsd, and I’m watching Bucky Barnes learn that his body is his own again. I’m disabled and chronically ill, but I’m seeing professor X and daredevil be disabled and spectacular. I watched Steve Rogers become something stronger without losing who he was.

They aren’t just comic books. They are reassurances. They are lifelines.

#tumblr reblog