I’m So Normal It’s Abnormal

Hello there,

In my last post I talked about how I was waiting for a doctors appointment, I managed to get an appointment for Friday evening. It was with a different GP, because my usual one has gone on maternity leave, but luckily she was really nice.

So…to get to straight to it…all my tests came back normal. Lupus was negative, Lyme Disease was negative, my autoimmune panel all negative, I had no signs of inflammation in my body, and my general blood work was normal. The only thing that was slightly low was Vitamin D, and that’s to be expected with how much time I have to spend indoors.

As messed up as this is, I felt crushing dissapointment. I wanted there to be something wrong that could be fixed, or at least for the tests to reflect how ill I feel. I think that’s one of the hardest parts of this illness, to feel so ill and yet all the tests come back clear. I just don’t understand how that can happen.

The only positive that I can draw from this is that at least my health isn’t going to get more complicated. I have ME/CFS, POTS, depression and anxiety, god knows how throwing something else in the mix would affect me.

On the down side it means there is nothing that anyone can do for me. I just have to deal with it, which is really rubbish.

The last few days have been hard, I’ve been trying to stay positive and appreciate the little things, but thats difficult when today I’ve not been able to get out of bed.

Having fresh flowers in my room is definitely one of the little things I do appreciate though.

I think I’m going to cocoon myself in a blanket and listen to audiobooks.

Until next time, Rhosyn.

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Turning 22

Hello there,

So a couple of days ago it was my 22nd birthday. In my last post I talked about how I was feeling quite down about it, but I also said that with me, the anticipation is always worse than the actual event, and it was true this time as well.

In our family we have had the same routine for every birthday for as long as I can remember. Cards and presents with breakfast, whatever we feel like doing for the majority of the day, and then tea and cake in the afternoon with extended family. I would have expected this to vary slightly over the last couple of years what with my sister going to university and me not being ill, but somehow we’ve managed to maintain it.

However this year it became obvious that we couldn’t do presents in the morning because there is no way that I would be able to wake up early enough before my parents had to go to work. Instead both of my parents came home at lunchtime, my grandparents came over and we had tea, cake, and presents then.

I got some really lovely presents; a couple of books, a record, some jewellery, a lovely colouring book, some clothes, and an art print.My mum made me rhubarb and star anise upside down cake, it was seriously delicious!

A couple of my presents.

The whole day I had the Taylor Swift song in my head, I kept singing “I don’t know about you but I’m feeling 22″…except I changed it to “I don’t know about you, but I’m feeling 82.” I feel like that could be a great parody opportunity for chronic illness sufferers! haha.

I’ve been feeling extra ill the last few days because I spent a lot more time out of bed than I usually do on my birthday. I was supposed to have a doctors appointment today, but it got cancelled because the doctor was ill, I didn’t mind really because I felt so terrible, but it does mean I’ll have to wait even longer to get the results of the blood tests I had done. My mum’s going to ring them tomorrow morning to try and get me another appointment as soon as possible, I just have to sit tight until then.

And with that my birthday is over for another year, I’m 22.

Until next time, Rhosyn.

Compulsory Happiness Is Hard

It’s my birthday tomorrow…and I’m not feeling excited. In fact I’m feeling rather depressed.

I always find my birthday (and christmas) hard, in fact I remember writing a very similar post exactly a year ago on my old blog, but I didn’t feel confident enough to publish it. I know for a lot of people it’ll be very hard to understand why birthdays and christmases are difficult, but I’m going to try and explain.

For one, these are some of the few days in the year where it’s practically compulsory to be happy. Now, as anyone with depression will tell you, being happy when you’re supposed to be is pretty much impossible. When I feel like I should be happy, and I’m not, I feel inadequate, and wonder whats wrong with me, why I am not happy like everyone else? Then you have to expend energy on pretending to be happy, and for me, energy is hard to come by at the best of times.

Secondly, birthdays and christmases mark the passage of time in way that’s very hard to ignore. It reminds me that another year has passed, and I’m still not better. This will be my 3rd ill birthday.

Lastly, my birthday makes me sad because I can’t celebrate like a regular person of my age would. I can’t go out with my friends, or have a party, or even have a drink.  It’s one of the few times a year that I get really angry and frustrated, usually I’m quite accepting of my illness and my situation, but that all goes out the window now.

I’ll be ok tomorrow, the anticipation is always worse than the actual event. I’ll have a lovely time with my family, eating cake, drinking tea and opening presents. It’s not how I thought I’d spend my 22nd birthday, but that doesn’t diminish the niceness of it.

I already feel better just for writing this. I’m going to go and open the parcels that got delivered today now, that I didn’t feel like opening before.

Until next time. Rhosyn.

Just Not Right

The last few days have been slightly better, but still not great.

As opposed to having really intense nausea for short periods, I’ve had low level nausea constantly. I suppose this is better, because it is less limiting, but yesterday I also had a really bad headache so all in all the past two days have been a write off. I haven’t done anything.

I’ve felt really unsettled and anxious as well. I was trying to explain this to my mum yesterday. I don’t feel horrendous, I don’t feel really ill, I just do not feel right.

Luckily today is the first time all week that I’ve felt more like myself. I got dressed, I sat in the garden for 10 minutes, I read my book, I even sorted out another box of stuff in my room (only 2 left!) So all in all today has been a good day. I also went went a BIG online shopping spree, so it was definitely a good day! haha.

I decided to wear my serotonin necklace (i.e. the happiness molecule) today, in the hope that it raised my spirits. I think it worked!

I’m going to read some more of my book and then go to bed. I’m desperately trying to finish it before my birthday, because I’m getting lots of book as presents. I’m not sure I’ll manage it though.

Until next time. Rhosyn.

My Body Is A Battle Ground

The last few days haven’t been that bad. That was, until this morning, when my nausea returned full measure. It meant I couldn’t go to yoga, and it’s really got me down.

Yesterday was good, I even managed to play video games with my sister for over an hour! I felt quite content lying in bed in the evening, watching tennis on TV. I slept well (for me), I woke up feeling relatively ok, quite a bit of pain in my neck and back, but nothing I couldn’t handle. I was really looking forward to yoga, and then…the nausea starts. I’m forced to abandon all hope of doing anything today. All I can do is curl up in a ball on my bed, listen to audiobooks and sip mint tea.

I honestly couldn’t live without mint tea.

After a couple of hours it got a little better, but I’m still feeling weak, dizzy and very tired.

I can’t put into words how frustrating it all is. I feel like my body is tricking me into feeling happy and hopeful, only to take it all away the very next day. Constantly I feel like my body is working against me, I feel like shouting at it “what have I done to make you hate me so much?!”

Right, it’s out of my system now. On the plus side I did have 2 relatively good days before today, I had enough energy to read quite a bit which was nice. Also it’s my birthday in a weeks time! 🙂  I’ve not got any plans to do anything special, but I’m looking forward to it none the less.

Until next time. Rhosyn.

Extra Fatigued

I’ve had a pretty uneventful last few days really, because I’ve been really really exhausted. More exhausted than usual, extra exhausted if you will.

My nausea has mostly subsided which I’m very pleased about, because that was really unpleasant. I’m still going to ask my doctor about getting some anti-nausea tablets though when I see them next, because if it comes back I want to be able to control it (or at least try to).

I had my blood tests done on Thursday, they took a lot more blood than I was expecting, and for some reason my blood was coming out really slowly, so I had to squeeze my fist to help it along, which made it hurt. I used to be absolutely terrified needles, but after 3 1/2 years of being chronically ill, I’m a total pro at having blood tests done now. I see this as a positive outcome of being ill.

I’ve got a cracking bruise now!

Maybe my blood tests is the reason I’ve been so tired the last few days, might also explain my headaches. Does anyone else with ME/CFS have negative effects from having blood taken?

My parents are away tonight, so my sister’s looking after me! She’s made dinner and now we’re watching The Hobbit.

Hopefully the fatigue will lessen soon and I’ll have something more interesting to write about! haha.

Until next time. Rhosyn.

Slight Change Of Plan

Ok…so there was a slight change in my plan for today.

Last night I was woken up by my mum and dad running up and down the stairs at about 11pm. I didn’t go and investigate, I was too sleepy, I figured they’d come get me if it was a real emergency. It turns out that one of the hot water pipes had burst, and hot water was gushing out in our basement. Luckily there wasn’t any major damage, my dad turned the water off in the whole house, it stopped and they managed to clean it up, it took ages though, they were pretty tired today.

So we haven’t had any water all day. The engineer has just been and managed to fix it though, I was surprised it was so easy, but very happy! haha.

I had to change my doctors appointment that was supposed to be this afternoon, because my dad had to wait in for the engineer to arrive. I’m going in on Thursday instead now, it’s the same day as my counselling so I will be overdoing it, but I really just want to get it done.

I’m secretly very glad I had to change it though, because I slept really badly. I had uninterrupted nausea pretty much all night, which wasn’t very pleasant. I feel like there should be a word for that. You have insomnia (for not being able to sleep), painsomnia (for not being able to sleep due to pain), so what about nausea…sicksomnia, nausomnia? Hmmm needs some work I think, any ideas anyone? haha.

I’ve just been taking it really easy today, the nausea hasn’t totally gone but I’ve been forcing myself to eat because otherwise my energy levels are even lower than usual.

Tell you something that I did do today actually, is organise all my pills into this snazzy new tablet holder! Each draw has 4 compartments; breakfast, lunch, dinner, and bedtime, so it’s pretty good.

Hopefully tonight will better.

Until next time. Rhosyn.