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

Crash and flare

I’m in a massive flare and crash at the moment.
I’ve been feeling off for a few days and I had a feeling I was going to flare and crash which may sound silly to anyone who doesn’t have chronic condition/s. I noticed my muscles becoming a lil bit tighter each day, my hands and feet swelling in the day and being swollen when I woke. My body felt out of synch, becoming slower and more achey my mind more confused and unable to think properly. I woke yesterday feeling unwell and in a lot of pain, my muscles so tight by the early evening I could barely walk or move. Today at 3am I woke in hell, I couldn’t move for an hour after waking, and when I did move I wish I hadn’t. My muscles are screaming at me, the pain is everywhere and my bone pain is back.

I’m disappointed and slightly annoyed, after a few weeks of being much better my body has whipped the rug from under me and is reminding me that my conditions are always here. The worst thing which overrides every pain, muscle lock, bone ache is disappointing others. I was doing so well, hoping this was a turning point and everyone was so pleased. Now I’m back to square one and I hate that it’s others I am disappointing after their hopes were raised.

I spoke to my specialist yesterday, she has taken me off the pain meds she prescribed and can’t give me anything else until my MRI, x ray, ultrasound and blood results are back. She received a letter from my rhumetologist and wouldn’t say exactly what it said, just that my muscle swelling is off the chart and he’s investigating other possible conditions. I managed to get her to say he thinks there’s something more going on, sneaky of me but her reaction prompted me to do so. After all the letter was about me! I hate all this, oh I can’t tell you exactly stuff.. Um excuse me, he’s talking about me? It’s my body that’s being discussed and it’s my right to know what’s going on. So I have to manage on oramorph and codeine again until my results are through, which will be in a month or so. I have to wean myself off the pain med as my body will go into craving mode if I don’t.. So I can’t take codeine for another week or so and just have oramorph til then… :s

I understand why my specialist can’t prescribe until my results are through, and I need to wean myself off the drug. I don’t blame her, and will even think about her suggestion of being an inpatient to be monitered. I understand but that doesn’t mean I’m happy about the pain that is and will continue to raise it’s ugly head until I get my results. That I’m happy I can hardly walk again or use my right arm properly. This is a bit of a nightmare, which I’m awake for and know it’ll continue for awhile before it fades to a more manageable level.

On a happier note, I have had my owl pendents come through to make owl necklaces 🙂 my partner has bought all the pendents, beads, equipment I have and I still have more to come. I am thinking of selling them and donating a percentage to m.e and fibro charities. I try to donate how I can, giving clothes etc and although it won’t be hundreds of pounds it’ll be something to help aid their research. Also it is giving me something to focus on at the moment. I still have my left arm and half my right hand in use. Until I lose total use of both hands and arms I will continue to make bracelets and necklaces and get around the flat as best I can.

And I have the memories of the zoo achievement to make me smile. That day will make me happy forever 🙂