Hey cuties! This is sort of a ‘throw back saturday’ or ‘flash back weekend’ type update, hehe. #laterblog
Last summer I was extremely lucky, ’cause I got to see one of my favourite bands perform. Edward Sharpe & The Magnetic Zeros ❤ The gig was at the beach, which made it even more perfect ❤ I filmed a lot that day, because I knew it was a special one. But I never got around to editing everything together. UNTIL NOW! yay!
It was a really fun day, and I think you can really tell that it was in the video =) But I do want to note that a day like this is very, very, VERY rare for me these days. It took me several weeks of preparing before; resting a lot, not planning too many other outings, takings painkillers during the day, showering the day before, etc, etc. I was in a lot of pain before, during and after the concert, but I pushed myself to stay there, and to try and enjoy it while it was happening. Which was hard, so I’m very thankful that I made a lot of videos, because they help me relive the experience, without feeling the amount of pain that I was in =)
Afterwards I was absolutely exhausted, and I don’t even really remember how long it took me to recover. I think I showered three days after? Something like that? Those recovery bits are always a blur in my mind, so I’m not sure.
So yeah, gigs are not easy for me, and I wanted to remind everyone of that. Because somehow people always think you’re cured when they see that you’re smiling and/or happy. (oh how I wish that were true tho, hehe) Some days are just worth all the pain and trouble, and this one definitely was. So without any further reminders of my pain and agony,here it isssss <3333
For the past couple of posts I’ve been looking back at therapies I’ve had, the ideas behind them, and how I feel about them now. You can read ‘How I got ill’ and ‘Pacing’ at those links. Right now, I’m going to delve into GET.
Pacing is all about not putting too much pressure on your body. Always staying well below your body’s limitations and doing about 50% of what you are capable of doing. It is about resting your body, and giving it the time and space it needs te recover. To completely counter that, therapists also recommend GET, or Graded Exercise Therapy. This is the exercise or fitness bit of therapy for CFS/me.
It’s a fairly simple concept. You pick any exercise of your choice, start slow for a short amount of time, and slowly increase your time/weight/etc. The idea is that this will not put too much extra stress on your body. But you are still working up your strength and stamina.
(please note again how pacing was about not doing too much, while this talks about constantly increasing what you are doing. Yup. Makes total sense. Nothing confusing about these things. Okay. Moving on.)
This summer Kevin and I went to the Veluwe. We rented a wheelchair bike, and saw how beautiful our country can be. It was absolutely perfect, because the heather was in full bloom and there were purple carpets all through the forest. So magical ❤
Unfortunately my camera had some trouble with the film, so the first few shots were all accidental double exposures. They turned out kinda pretty tho, so I ain’t mad.
Hey cuties! To break the amount of large text posts, I thought I’d share a vlog I made a couple of months ago. It’s taken me a while to edit it, but I finally finished it, yay.
It’s a bit of a boring day, and I wasn’t sure if I should share it or not, but since this is normal life for me, I figured it was worth sharing after all. Real life with Annika and all that jazz.
So there you go, a shaky, wobly vlog, with pretty crappy sound and video quality. Hurra.
Expect loads of kitties, cups of tea and resting. Oh and Kevin coming over for dinner and cheering me up, yesh ❤
A while back I tried to make sense of all the information in my brain regarding how I may have gotten as ill as I am now. Today I’m going to try and do the same regarding one of the main physical therapies concerning my illness; Pacing.
The main idea behind pacing is to always do less than you are capable off, so you can ‘store energy’ for later use.
My therapists explained to me that I need to pace myself in order to get more energy. Which meant that I should always use about half of the energy and strength I have in me. Which will result in saving up energy. Which will result in a gradual build up of energy. Which will result in ‘getting better’.
So yeah, this chronic illness that I have is very, very misunderstood. It has been misunderstood for many years, and will probably be misunderstood for many more to come.
However, there is more and more talk about it in the medical community. More and more doctors are realising that it is in fact a ‘real’ illness. (as if there are fake ones?!) More and more people are talking about it. More and more people are taking it seriously.
And with all this talk about it, come more people trying to understand it, which brings even more misunderstanding.
Let it be clear before I delve into everything else: nobody is certain what can and will actually help people with CFS, because you need to understand the cause of an illness, to truly cure it. But more and more people are coming up with their own way of ‘fixing’ it.