A little bit. :) had an appointment this morning and they’ve just given me something for the headache(s that I get a couple times a month). The test results hadn’t been sent from a&e yet so they couldn’t do much else, but I’ve got another appointment a week on Thursday to look at those, possibly sort out a 24hr ECG, and maybe do another blood test particularly for thyroid levels. If I get worse before then i might call for another urgent appointment cause they might have the results back. But I don’t like bothering people :s
I want to carry on with life already, I need to work. I want to either be completely alone, or properly looked after! Vlaaahh :(
I’m a bit fragile today I think. Dad is still rubbish, joe is still busy. I’m upset or grumpy or bored. I’m in too much pain to concentrate on anything.Thank you to everyone who gave friendly comments on my last post. Does make me feel better :)
woohoo spent the night in a&e. I’ve been collapsing since wednesday night with dizziness and weakness and palpitations and my gp on friday said i should come back if it gets worse. (disregarding the fact that this is the second time i’ve gone in with these problems.) It gets to saturday night, i’m still getting these episodes, plus the worse migraine ever. (like, EVER)
i’m brought into a&e, they actually take me seriously! I fell on the doctor after she took some blood, I fell onto a nurse later on while she was getting my standing blood pressure, they do every standard test and could find nothing wrong so i stayed there for a while longer until i was sent home with some cocodamol. I was treated really well considering my main complaint was pain. they got me my own room, bed and blanket. The nurse even turned off the main light cause it was too painful, she turned on a lamp instead and faced it to the wall. She was very kind :)
Anyway, today is now wasting away while i’m in bed, still with all the same problems as before. My family are being shamefully neglectful of me and i’m a bit upset about that. Been checked in on once by my dad since we’ve been home. I can’t even walk unaided yet. When we got in he went straight to bed and i was left to stumble around and get my own hot chocolate and hot water bottle and get myself upstairs to bed. Actually I fell again in the kitchen. I feel so lonely. My church family have all been praying and sending kind messages though, so that’s been lovely.
I’m so bad at fibromyalgia, I just try to do everything anyway
Then I end up feeling like I do now 3:
One of the strangest things I’ve experienced from having fibromyalgia is the deprivation of positive physical feeling. (My brain is struggling to form sentences so bear with me..) It’s like, all I physically experience is pain and tiredness and physical exhaustion.. After a while I crave to feel something new! I miss the feeling you get when you exercise, that tired satisfaction and adrenaline and fast heart beat. I miss enjoying moving, and stretching and relaxing.
I can see why people warn me so much about how people with fibro get depressed. Life can easily become so colourless.
I’m trying to enjoy all I can, though. Like laughing, and crying. Like cold winds in my face! Anything to break the sedentary monotony that can shroud life for me.
Had a bath, did the washing, went to asda, baked two loaves of semolina bread, and also made and froze some portions of a very tasty oven roasted ratatouille. (premade frozen meals are great for high pain days!)
Then I did some more washing and houseworky things (all the while having some fantastic worship time), but now I’m exhausted at 5pm on new years eve :’)
I was set to clean Joe’s house today too! I still might if I push through it :)
In short, it was great. :)
It stops me from falling, lets me walk for longer without having to sit, and takes a lot of the weight from my back and legs :)
Also, everyone was so lovely to me! I took a test run (run’s not the right word…) into Edgeley to a fabric shop I wanted to visit (the velvety story from that will probably come another time), and on the way there, the bus driver didn’t start to move again until I’d sat down, many people held doors for me, reached for things for me when I needed, just generally were nicer. Because they could see something was wrong, I got the little bits of help that really help me through the day. :)
It took a while to get used to though, like getting my left hand to be as good as my right when I need to use it on that side.. but that’ll all work out :)
My walking stick is also a grabbing stick, pointing stick, and hitting stick when need be. I’m really happy I took this step. (tehe, step. geddit?) Now just to see how friends and family accept it… :)
All about grace and freedom! :) But I was tired from the festival yesterday, so I found it hard to keep concentrating, and thought I’d struggle talking to people after, especially with no Joe for comfort. I really needed to talk to someone about a problem that came up this week but I felt like I’d be judged.. and I was dithering about going up for prayer. My good friend Bekah was really nice to me, gave me some good advice (as usual, she’s one of those people who are wise beyond their age.) and I ended up talking to and crying into the arms of my friend Susan. God surrounded me with calm, nice people and no pressure. :) Ooh, also! My friend Jake bought me some flowers! They’re pink, purple and white, it really picked up my mood to receive them. :) I must remember to write him a card, or find a small present to give in return.
The festival was good yesterday too. Really good music, lovely food (more Indian!) and a jolly time of it. I had to go home earlier than my family though because I was in too much pain and too tired. I’m glad I did, the journey home was peaceful and I got to reconnect with God in peace. :)
And tomorrow, Joe comes home! :)
My hair’s falling out. It’s scary! Thankfully hair loss with fibro is apparently only temporary, but distressing nonetheless. :s
It’s often been said to me, in relation to my fibro, that I should ‘take it easy’, ‘take things slow’, ‘one day at a time’.
I’ve been told similar advice in relation to my recovery, too.
But how am I supposed to do that exactly?
I’m eighteen, and I’ve just left college. Life for me isn’t supposed to be ‘slow progress’, it’s meant to be fast-paced, carefree, irresponsible and fun. This constant management and monitoring of my health and progress isn’t any of those things. I honestly don’t know what to do.
Say I do 'take it slow', where does that leave me once I’m healthy? (as healthy as possible with a chronic illness, that is) I’m missing out on life as a young person. I’m being left behind. I know I’m talking as if it’s some tunnel, some alternative road that cuts me off from everyone else until I rejoin them, but that’s how it feels. That’s the nature of this illness.
…Anyway, I don’t know where this post is going. I’m just frustrated. Soon all my friends are packing off to universities all over the place and I’ll still be struggling to walk up stairs more than twice a day. My boyfriend will be busier than ever with his job, internship etc, and I’ll be stuck at home like normal, trying to stop myself from going stir crazy. What’s the point of beating all this stuff if I can’t do anything once I’m better? I feel like I’m doomed to just be catching up all the time. I know I got alright grades from my A levels but I know I could’ve done much better if I were healthy, in all aspects of the word. It’s unfair to have this many setbacks. No one gives you credit for just scraping average, no matter what you battled through to get there.
Argh so stressed and tired. need to rest need to rest need to rest.
also need to get up early tomorrow to go and lead drama workshops all day. then repeat that every day this week.
i know i’m going to enjoy it when i’m there but it’s such a battle.
To stay with his friend Damaris in Oxford until Saturday, and then we’re straight on to Peterborough for Faith Camp until the 4th.
I’ve never met Damaris before but I’m looking forward to it. It’s going to be an extended period of time for me outside of my comfort zone, and on mega-fibro-management-mode.
It’s gonna be so much fun, I can’t wait! :) It’s a real adventure for us both too. :) I don’t think I’ll have much (if any) access to internets though, but I think it’ll be nice to be away from it for a while really.
Pictures to follow, and I’ll see you on the other side!
I’m starting to hate going to bed at night because I don’t feel finished with the day; I haven’t accomplished enough for it to be over. It’s just my body that has had enough. I don’t feel like I’m achieving anything before it’s time to rest again.
How can you flippin discharge someone from the hospital when they have a chronic illness??
What am I supposed to do? :(