Discharged

I’d like to start by thanking a few people for their kindness and messages on my last blog. You know who you are 🙂
I appreciated it so much and am touched by the help, I hope to be able to return this kindness at some point. Thank you

So I had my long awaited rheumotologist appointment yesterday and…
He discharged me.

Yup, there’s nothing he can do for me and has said it’s in the hands of the neurologist now.
He suggested the Hospital again but then agreed that it wasn’t really feasible for me to do as a lot of my pain is neuropathic, due to the damage the ME has and is doing to my brain.

His suggestion was, wait for your neurologist appointment and in the mean time speak to my doctor about pain relief.

On the bright side, he could definetely say I have chronic fibromyalgia.. Yeah, cheers then doc!

So, back to square one. Though I do have some meds to discuss that someone put forward so I will do that with my doctor on the 8th October.
I also need to stop my morphine.
A, because I am taking half a bottle before I feel anything, and even then it isn’t dampening the pain.
B, The amount I’m needing to take is way too high for my liking.

My body must be quite addicted to it by now, something I don’t like at all! I shall discuss this with my doctor too.

The pain is still bad, the trip to the hospital made it even worse. It’s not at screaming point today thankfully just shouting point… Aha 🙂

Bright note..

I’m still reading and taking notes as I go 🙂 this is so important to me, especially at the moment when things aren’t great.
I was able to download some great books from a site that was recommended to me, thanks again Fern 🙂

I have them on stand by and mean to get through them one by one after my current kindle book.. If it takes a year I’ll get there! ;D

In all honesty I’m feeling down still, finding things a bit difficult. Constant pain has a funny effect on the mind, as does the lack of sleep it’s causing. One moment I’m despairing about how I’m going to get through each day in so much pain and symptoms. The next I’m Boudicca battling through and knowing I’ll do all I can!
Without the outfit unfortunately, that was one cool outfit she had! 🙂

Deep down I know I’ll make it through, my track record is pretty good but it’s the getting through that’s the testing point.

None the less, I am still counting my blessing and an forever grateful for the things I do have.

I bought a lovely tin of Roses Chocolates, Christmas is definetly on it’s way now they are in the shops! 😀
I am steadily munching through them, eating sensibly in between of course but with several chocolates thrown in.
Just opening the lid smells of Christmas, this makes me happy!

Despite how things are at the moment I can and still have many things, birthdays, family stuff, christmas etc to look forward too and I aim to do it with full gusto!

Maybe a couple of chocolates first though… ;D

Pain and achievement

I was laid in bed yesterday trying to think about anything but the pain I was in, but then as is often the case all I could think about was pain.

My pain levels are through the roof at the moment, and for the first time in a long time looked on the interweb for any foods I could introduce or new or long standing pain killers I could suggest to my doctor.
Unfortunately I found nothing new, and although I have had many people suggest medical marijuana it’s not legal in this country, only in spray form for cancer and ms sufferers.

Would I take a marijuana tablet if I could? The truthful answer is, I would try anything that would lessen the 24/7 pain I am in.

What a lot of people don’t realise is constant pain is absolutely exhausting. It literally takes away your energy, your movement and causes palpitations. The smallest tasks, such as making a cup of tea can lead to shaking limbs, exhaustion, breathlessness and more.. Every thing you do takes your energy and gives massive pain.

I had a letter from my pain clinic consultant which said she doesn’t think she can help me as my pain levels are too high, too debilitating and my body doesn’t work well with the opiates I am on, ie hardly work.
What she does again suggest is I go as an inpatient to Baths pain management centre and they may be able to help me..

First off, how the heck am I supposed to get to Bath? It’s a 40 minute train journey from here, not including getting to the train station, waiting for the train, the journey to the hospital after the train… Sitting up and being in a wheelchair the whole journey which shakes my legs and back up so much I can barely stand for days.
I don’t want to be stuck in a bed, noise, lights people, bustle around me and a kinda guinea pig they will poke and prod.

Apart from the mumbled, usually a few days..I have been given no real time scale how long I would be in hospital which is never good.

But my options are, I put up with the pain and continue to look for painkillers that don’t make my body scream in pain anytime I move a body part, or I go to the hospital which would cause a massive crash and be in there for an uncertain amount of time.

They’re not good options, and this upsets and angers me.

Because I desperately need to reduce my pain levels but I am now being told my pain clinic can’t help me so I’m back to square one.

So what am I supposed to do? How am I going to live in constant bodily pain day after day, year after year?
My hands and feet are now swollen again and laying down doesn’t do anything but make the whole body throbbing worse.
It’s difficult to do anything at the moment, even breathing causes pain!

I will continue to look on the web for anything that may help me, fingers crossed I’ll find something.

On a positive note, I am extremely happy about something I’m managing to do.

I have been reading, reading!!
I had the idea of writing down what had happened during each chapter so I can look back on it when I forget.
So I downloaded a book and it’s exactly what I am doing, writing as I read.

This is a huge development, yes I constantly forget what the previous paragraph or page said but I can get a memory jolt by looking at the notes I’ve written.

I am so so so happy about this! As I’ve said before I was a total book worm, and not being able to read has been extremely difficult for me.
Reading was always my escape, from stress, problems, illness and life. It relaxes me, makes me feel comfortable and stories, plots, style of writing fascinates me.

So I am escaping the pain for a lil while by reading and I am very happy doing so. It’s good to have something back in my life that I have really missed. Good to feel I am achieving something despite the pain I’m in 🙂