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 🙂

Chronic pain strikes again

I have no idea what happened to today’s blog, it only uploaded the first part of it! Grrrr

My chronic pain is back with avengence, but I’m hoping it’s a short lived thing. I can only take oramorph and paracetamol in between new pain meds and even though my pain meds have been tripled in dose I’m still in massive pain. Fingers crossed it’ll ease off.

I had a plumber come today, my toilet wasn’t flushing properly which was yucky. I took the top off the cistern and saw I needed a new ball cock (tee hee) in the past I would’ve fixed it myself but I no longer have the energy or ability to pop to the shop for supplies. The plumber was nice enough and fixed it within minutes, so my toilet now flushes better than ever. Relief 🙂

It’s my partner and I 1 year anniversary on Monday. We are planning a trip to the zoo which I am really excited about! I am hoping that I can go, it’ll be the first major outing for me in neatly 2 years. I’ll dose myself up with painkillers and bring my aides and other bits to make the day easier in my body.
I want to roar at the lions oooh oooh at the monkeys and go into the bat sanctuary and have them fly around me. I am going to do my best to get there!

It is my longest proper relationship and although it’s been difficult at times we’ve got through it and are stronger than ever. I became really unwell within two months of us being together which would impact on any relationship. I was willing to let him go, I said I wouldn’t hold it against him if he did and I didn’t want to put my stuff onto him. He refused and has been there every step of the way. There is a six year age difference between us, he’s younger but it’s not an issue at all as we are very mentally connected and he is very wise. He tells me every day he loves me, how beautiful I am and I know they’re not just words. He is the guy in movies you watch that are loving, supportive, kind, always there and you never believe that kind of man exists. But he does, and I love him more than I could describe, I appreciate him and he is my equal in every way. I am an incredibly lucky lady.

I aim to make some bracelets later on if my pain decreases, I have so many beads, silver accessories and chains that my partner bought I could make around 50 with them. I also have neckelace items which I am to make, I love silver! It’s favourite colour next to black. I will post pictures if I do make them and would appreciate honest opinions 🙂