New Year, Same Me

So there’s the big cliche of making a new start in the new year.. Mines a little late.

January so far has been a right shitter. A whole bunch of bad stuff happened, and I’ve generally been a miserable cow. Now its almost out of the way I’ve decided to start trying to better myself, mentally and physically.

I’ve been working a lot more on my degree the past few weeks. Even though I’m shockingly tired all the time thanks to the M.E, I am finding that having a genuine, vested interest in the subject matter has made me actually want to do more. Its working well at the moment as I’m working part time. I finish at 2, come home, rest/nap for a couple of hours then pick it up in the evening. It’ll be interesting to see if I can cope once I have to go back to full time.

Wedding planning is coming along nicely! So we have the venue.. Which is actually at a bike rally hosted by my families bike club (fiance and dad are both members), we have the celebrant booked, and the registry office is booked. We want a big fancy bell tent for the weekend since we’ll be there from the Thursday to the Sunday/Monday, and I don’t want to attempt getting ready in a two man tent! There’ll be live bands, food, drinks and bikes. Super exciting. I was never interested in getting married so I’ve never had any plans for it. This is entirely for Chris. I’d be happy down the registry office with a couple of witnesses, but you can’t win them all.

hq poster

Another MASSIVE cliche I shall be partaking of, is losing weight! I’m joining slimming world with my Mum next week. I haven’t weighed myself since I moved out of my flat and back into my parents with Chris, and everyone tells me I haven’t put any on, but I feel massive and unhealthy. I imagine the M.E plays a big part of it, and like, the fact that I hate every single part of me, but I don’t want to be huge at my wedding. Not when there’ll be photographic evidence. Usually I can avoid ever seeing photo’s of myself, but I suppose I’ll have to see these ones eventually.

Birb Update! He’s still a twat. He’s literally obsessed with stealing any people food he can get his beak into, but I hear that’s not an uncommon trait. His feathers and beak are a lot better now. Much healthier. We’ve started sticking him in the shower with us whenever we shower, since his idea of a wash is sticking his face in his water bowl and flapping around. Its brought his green out beautifully! I doubt he’s ever had a proper shower before so it’s taking a little time to get him used to it, but it’s pretty funny. He likes to sing and wolf whistle, which is a nice little confidence boost when you’re nakey 😉

So those are my plans for Feb onwards. I just want to be healthier and generally happier. I mean, I;m not unhappy, just unhappy with myself.

Things will get better!

Advertisements

Me and ME

Over the last few months I’ve been undergoing loads of blood tests and been to a billion doctors appointments. My blood shows something but doctors don’t know what, so I’m being referred to a specialist for that. I’ve also been told I have ME (Myalgic encephalomyelitis), also known as Chronic Fatigue Syndrome, likely brought on by a viral infection I had back in May.

Since the diagnosis not much has change really. There’s not a whole lot that can be done apart from pacing and managing the symptoms. I am not good at pacing and will continuously push myself too far, mostly due to guilt. I can’t say no, and I always feel like I need to ‘keep up’ with everyone else. And I’m generally too scared to actually ask for the help and take the breaks I need. It’s hard. I also feel like people don’t take me or ME seriously as an illness and when I say I’m hurting or I’m tired, I get a lot of ‘awww, poor baby’ responses. It just makes me feel bad and I’ll carry on pushing despite being asked if I’m ok. It can lead to me doing damage to myself and genuinely not being able to function for a few days

‘Brain fog’ has been a bit of an issue for me as well. Forgetting words, forgetting doing things. Little things that throw me off. Trying to type and forgetting how to spell things, what order the letters go in. Drifting out of focus only to look back at my screen and I’ve typed a paragraph I don’t remember doing. It’s….odd. And embarrassing. I also can’t remember people’s names at work, and its even harder when I’m put on the spot or in a meeting or something. I don’t like it.

I’ve joined some self-help groups for ME sufferers on FB and they’ve been a good place for me to get advice on looking after myself and making a start on pacing, so that’s good. I don’t think there’s a lot of help out there for us so it’s down to us to look after ourselves and each other.

For those that are interested, this is a list of my current symptoms:

  • exhaustion, like, constantly. For no reason. No matter how much I sleep
  • back hurts
  • hips hurt
  • knees hurt
  • hands hurt
  • brain isn’t working
  • cant concentrate
  • cant find the right words
  • dry mouth
  • palpatations
  • confusion

All super fun things! Not to mention I’m still at work while dealing with this. I took a day off today as its a particularly bad one, and I’m terrified of my back to work meeting.

For those of you unable to comprehend a chronic illness, especially one based around energy consumption and pacing, the ‘Spoonie Theory’ is a good explanation of it.

The spoon theory is a disability metaphor and neologism used to explain the reduced amount of energy available for activities of living and productive tasks that may result from disability or chronic illness. … A person who runs out of spoons has no choice but to rest until their spoons are replenished.

Basically, we have a set number of spoons to use a day. Go to work? Uses 5 spoons. Shower? 2 spoons. Cook something to eat? 3 spoons. Eventually you run out of spoons and all you can do is rest until you get some back. In tough situations you can ‘borrow’ spoons from the next day. But you have to bear in mind that you will then have to get through the next day with LESS spoons to start with. At the moment, nearly all my spoons go on work. If its a stressful or busy day, it costs more. Every activity cost something, and I’m trying to learn how to pick and choose the ones that are important. Its difficult. And I’m not very good at it. But I’m hoping I’ll get better at it.

Anyway. Sorry if this particular post makes not much sense. I’m doing my best on minimal spoons. I have spent nearly all day asleep. Its taken me an hour to type so it’s all you’re getting!

If anyone has any questions about it, or any fellow spoonies can point me in the direction of any good blogs or self-help stuff I’d appreciate it.

A x