Frustrated, But Forgiven
Today has been a pretty low day, energy-wise. I have been flat on my back in bed, grateful for my new gadet…my brand spanking new iPod Touch. As I said the other day, my connection to the internet is my life-line on days like today. And I have struggled to get my laptop to connect, wirelessly, or via the LAN cable!! Aargh! My darling husband even moved the broadband router next to my bed, but that hasn’t seemed to help much! I have wanted to get on here and write, and have been foiled in my attempts…until now! I can access my blog from my iPod, but I’m not very proficient at typing on the touch screen yet, so after a short-lived (failed) attempt to blog from there, I gave up. It just took too much concentration and energy, so I felt it was being counter-productive!
Never mind. I’m on here now, so all the frustration is past…for the most part anyway.
I smile to myself when I realise how my illness really does colour my whole life. How do you know that you’re going through a relapse? When all the things you’re looking forward to are assistive devices and aids. I finally swallowed my pride (some of it anyway) and agreed to let my husband refer me to our local wheelchair service. I usually borrow wheelchairs at museums and such, but have resisted having one of my very own. In my mind, it felt like it would be admitting a small defeat. My husband (who is a physiotherapist by profession) finally made me see that my stubborn refusal to accept a wheelchair, meant that I was making MYSELF a prisoner in my home. It meant that we could only visit places that loaned wheelchairs, and meant that I couldn’t even get out in our little village for a change of scene. I can see now that he is totally right. What a tot I am!
Another thing I’m waiting to have delivered is my bathboard. We have an over-bath shower, and I’m really struggling to use it as I get tired standing too long. And don’t even let me get started on the issue of washing my hair…!!! So I finally contacted our local community Occupational Therapy service and asked them to issue me with a bathboard. Another bit of pride swallowed around that lump in my throat.
I turn 30 at the beginning of December, so Chris asked me what I would like for my birthday and for Christmas. And the two things at the top of my Wish List are things that will make my life easier on the days (and weeks) when I’m stuck in bed. Below are the links for the two products, if anyone is interested in checking them out. Oh well, some people may think I’m sad, but I just know that anything that helps me keep sane, and stay connected to my virtual-world, can’t be all bad. Here’s to the glass being half full!
All-in-one TV/DVD/iPod DOcking Station
Oh, and while we’re on the subject of Wish Lists… If you’re anything like me, and do most things online (like gift shopping), I’ve been using this awesome site to manage my Wedding Registry, as well as both Chris and my Wish Lists for birthdays, Christmas, etc. It is called TheGiftListCompany.
The other night I had my first dream in which I had CFS/ME. Usually when I dream, I’m myself pre-CFS/ME. Or, at least, I’m not limited by any fatigue. It really threw me the next morning when I remembered the dream, because it was so out-of-the-blue! I’m still not sure what to make of it actually. It has left me wondering if it is a new step in the acceptance of my condition – that I have accepted it on a deeper, sub-conscious level than I have before. And, if that is the case, I’m not entirely convinced that I’m pleased about it. Of course I know I have a debilitating, unpredictable condition, but isn’t it our fight against our circumstances that keeps hope alive? It’s probably a double-edged sword I suppose…acceptance means that we engage in actions that prevent us from aggravating our symptoms, yet refusal to accept the reality keeps us believing that we’ll be that person who suddenly gets better and returns to their old lives. Anyone have any thoughts on that? Am I just totally over-thinking things? Letting one dream get me in a flap for no reason? Hmmmm….they do say that an idle mind is the devil’s playground…
Well, enough for today. I need to save some energy for when my husband gets home. Too often he comes home to the shadow of my former self, and I need to make more of an effort on occasions. Starting now.
Fighting the Invisibility - Living with M.E. 
04/11/2009 at 3:36 pm
I know just what you mean. My laptop and wireless internet are my lifeline to the outside world, too. Can you imagine being chronically ill and TOTALLY isolated before the internet was available?
My 11-year old son just got an iPod Touch, too. I think you have to be under 20 to be able to type well on those little handheld things!
I’ve also noticed when I’m sick in my dreams. Sometimes, if I’m in the midst of a bad crash and go to bed with bad symptoms, in my dreams I’ll be worrying constantly about how sick I am and what I’ll be able to do. I prefer the dreams where I’m free and flying!
Sue
04/11/2009 at 4:11 pm
I’m slowly getting the hang of typing on my iPod Touch…primarily out of necessity, as my laptop is starting to get old and tired, and occassionally refuses to conect to the internet. Needs must!! And it has an RSS reader on that keeps me connected to all my favourite blogs, yours included, Sue! It has totally revolutionised my life. It has so many nifty features, like the notepad where notes can be emailed to anyone in your contact list! I keep a list of relevant questions, internet links, symptom developments etc, and then can just email it to my Specialist Clinic before my appointment. That way I never forget what I need to talk to the Consultant or Occupational Therapist about! Love it!
I’ve started to be sick in my dreams more often now, which is probably due to the prolonged relapse I’m slowly wading through…grrr… I’m starting to get used to them now.
Thanks for posting!
Sam
15/04/2014 at 2:32 pm
Concerning ” digestive supplement may dramatically assist you in the proper digestion of your food”, I suggest you take a look at http://cfsremission.wordpress.com/ it is focused on identifying the right probiotics to use.
26/11/2018 at 2:37 am
Ive been up all night reading Sams blog -only found it 2nite. Have made a note of this site to read later, I believe the gut biome to be critical and wish Inknew a dompetent specialist in this regard.