Today I started on a higher dose of heart medication. It’s almost 4am and I can’t bring myself to even try to sleep. I don’t want to see what it does.

Every night since I’ve been sick I’ve had nightmares. Every night without fail. But they’re worse, far worse, because of my medication. My doctor thinks it’s my heart medication, but I think it could be a pain medication I’m on.

I struggle for hours with insomnia - melatonin doesn’t work no matter what form it’s in. I finally get to sleep and I wake from pain. I get to sleep again and I wake from nightmares. I sleep, I wake from something. The cycle goes on until it’s time to get up. I’m waking every half hour at least. My dreams have always been vivid since I got sick, but now that’s worse too. If I am in pain in my dream I wake because I feel physical pain in my body. Not the normal M.E pain, for example, in one dream I was getting blood taken. I woke to feel like blood was actually being taken from my arm. I don’t know. Maybe it’s a case of mind over matter.

But these dreams are so real, I will be talking to my mum and bring up a conversation we had. Well, so I thought anyway. Many times it’s been things in dreams that I remember and recollect better than ‘real’ memories.

I know it’s all a bit silly for me to be bothered by this. But then again, I spend a good portion of my days sleeping (or trying to).

Things in my dreams scare me stiff. It’s all I can do not to scream when I wake up.

Here’s the cruel part. I have to double my heart medication because my heart rate is getting higher and my blood pressure lower.

Forgive me if I complain in following weeks about all this.

I have this mouth ulcer, and I mean I usually have at least 2 mouth ulcers at any given time. But this one is one of those awful ones, of which I’ve had a couple before.

It just bleeds and it makes my teeth and gums ache, my jaw and right up giving me severe ear pain. And when I eat it’s so hard to avoid it, and I end up in tears (fellow Spoonies will probably be with me on the whole -it has got to hurt a whole freaking lot before I cry- thing).

My tongue is covered in painful pimples too so it adds to the pain when I eat.

My headache preventative my doctor put me on isn’t working and I’ve had a headache for about a week now.

And I have to get some tests done which are gonna cost my parents $500 (which they don’t have) and none of it is claimable through Medicare.

I try not to feel guilty. It’s hard but I’m getting there. I’m studying Bhuddism a bit at the moment, when I can. I learnt the basic teachings a few years ago and it has helped me quite a bit through this illness. I need to go to the library to pick up some books on it when I can :} I love learning, so it’s nice to have a subject I want to ‘study’ in a sense. Not for school but for myself, because I take an interest in it.

But tomorrow I’m going to try and get the sewing machine out! Teaching myself how to sew patterns is something I want to do, though I can’t do that until we get a decent machine. For now I’m just putting together a simple ‘outfit’ for the Gaga concert next month.

Like I said, I like having projects and things to work on. I’m trying to give myself more things to do, more skills to learn. I might even be taking up French classes when they start at my local bookstore. With the brain fog it won’t be easy, but at the very least, it’s a great chance for me to socialise.

That’s my little ~update~ for the day. Take care! -gentle hugs to all-

chronicillnesscat:

[Image: 6-piece blue colored background with a Siamese cat.Text reads: “’We need to call Dr. House in on this one!’ Still isn’t funny.”]

Yes, I know they don’t know what’s exactly wrong with me. Yes, I know the premise of the popular TV drama House. No, it isn’t funny to compare me to it.
See, because at the end of their hour, they always have an answer. I don’t. But thanks for playing.

Thank you <3

Yeah, I know all she really wants is for me to be healthy. But at the same time, if she gets much sicker she won’t be able to look after me. I’ve tried telling her this but it goes in one ear and out the other ~_~

Thank you again for this message. Sometimes it’s just what I need to hear - and I’m sure the M.E sufferers who follow this blog find comfort in seeing messages like this on their dash :) 

I hope you recover fully as quickly as possible! <3 

I just don’t know what to do right now, I’m so stressed.

Usually I’m not like that, never have been, but it’s getting worse.

See my mum, she has M.E. Her doctor has told her this but she is in a major denial ‘stage’ that she’s been in for a couple of years. She just DOES NOT listen to her body. And it does my head in because I can’t stand to watch her get like me. I’ve told her this, thinking she’d maybe understand. What I get instead is ‘but I’m NOT sick’. She also said something which hurt a bit.
“I don’t have time to be sick.”

What? And I do?

But I know she didn’t mean it at all the way I took it.

Since she spends so much time being my ‘carer’ she doesn’t have time for her own friends. She’s never been one to socialize - family comes first, but it would be so nice to see her enjoy herself every now and then. But since I’m really the only one she talks to - I get dumped with a lot of her ‘venting’.

That’s okay to an extent, and I’m glad we have that kind of relationship. But seriously, some of the stuff she expects me to cope with after her telling me. It’s too much for me. I have my own stresses and issues to deal with, amongst my friends issues, and now my mothers to. Which to be honest, are the kind of things you lump on a psychiatrist.

I’m treading on egg shells too. I can’t tell her she’s been a total cow to me the last couple of days. I don’t know. I mean I never actually would use those terms to either of my parents. Let alone someone on heavy medication for depression and trauma. I don’t want to say the wrong thing, I cannot be the reason for my mothers relapse. Me being sick has already isolated her and made her mental health worse. I can’t do her anymore damage.

But at the same time, it’s hurting me. Emotional stress makes this illness psychically worse. And I can feel my body change stress in my head into pain in my limbs. Ughhghggh.

I don’t wanna speak too soon…but I think I’m getting my ‘spark’ back.

Last week I spent 5 days in Melbourne, which is almost 5 hours drive from where I live. I went to see my specalist, did shopping, saw a movie and had the greatest night of my life at a Prince concert. Sure, the whole time I was in a wheelchair. But at the concert I was so…full of life. I didn’t stop screaming and singing along the whole time. I was dancing (as much as you can in a wheelchair) and so ecstatically happy. I had taken more pain killers than I usually do to ease the pain I know I would get, but I was too happy to notice the pain. I mean, I was crying from happiness. If I can feel that same amount of happiness just once again in life, I will have been blessed.

I spent the day after the concert in bed, which was of course to be expected. But I was able to get up at around 4pm to go and see a movie.

When I got home I only spent 2 days in bed recovering from my trip. It usually takes me at least 4 days.

I’m just so happy with my improvement so far. With the help of my new specalist I am slowly, very slowly, getting my life back. I know it doesn’t happen instantly, and it won’t always be as good as this, but I’m holding onto it.

And if you know me then you’ll know how much dancing meant to me before I was ill, and still means to me. It’s 1am and just now I put on a music DVD, and danced around my room. Of course I wasn’t properly dancing, more of a shuffle and a few hip swings, and my body hurts now because of it, but I did it. I was able to stand for 10 minutes. I was able to move about while standing for 10 minutes. I was able to let my body feel the music again.

That’s given me so much hope.

Oh my god you know what sometimes I make posts and I think I have serious issues going on in my life and then people are so kind about the stupid things I have to say and quite frankly IT WARMS MY HEART.

I’ve been meaning to get new material for years now. But every time I find some in a store/online that I like we don’t have the money for it. But I’m saving my pennies now! (well..cents…but pennies sounds better) And I think I’ll probably buy some stuff online from IKEA. I’m also saving for some new shelving from IKEA C:

I’ve got some stuff from IKEA (I see a trend happening here) recently which I need someone to drill up to my wall. But my dad’s always busy on weekends, and my mum is just as ill as I. But it will happen, when my dad has a free 20 minutes I guess xD

I really know though that I shouldn’t be complaining. Everyone who comes into my room says they love it, because it’s so small and there is just so much…STUFF everywhere. I’m certainly one for having every bare space filled, which isn’t hard in a small room ;}