Dangerous Days

I’m feeling not too bad at all.  It’s dangerous days.

I’m still tired, always tired.  But … not too bad.  Well yes my IBS is still hanging in the balance but a little better. But I don’t feel – overall – too bad at all.

Friday I met a friend in town.  We talked and had a drink and went out for dinner.  I walked (not very far) from cafe to bar to restaraunt.  In the morning I felt zapped.  I had my D-Ribose, got washed and dressed, headed out with Growler to feed a friends cat a few miles away.  By lunch I was tired but I wasn’t crashing.

My friend from Friday had made a weekend of it and came to mine that afternoon.  We talked and just sort of hung out.  We played with the cat, she dug some weeds in the garden for me and planted a flower in the garden I’d had in a pot for a year and not managed to plant myself.  I was tired but not too bad at all.  Second dose of D-Ribose of the day and, well, I stayed tired but ok for the rest of the day.  My brain slowed a little in the evening but it was manageable.

Today, this morning, the next morning I feel … well, tired, but not too bad.  I find myself suspicious.  I’ve read a lot of blogs and forum messages of people with ME who say “I think I might be better – hurrah” and then a week later have crashed again.  So I’m trying to take it slow and steady.  Not that I am doing a lot more than usual – just enjoying the not feeling crushed by fatigue thing.

It’s been 9 weeks since I started taking D-Ribose.  I definately feel a benefit although it’s not a miracle worker.  My gain would be so tiny to a generally healthy person it probably wouldn’t be considered a gain.  But it’s my measure that counts in all of this.

I’ve also been taking 500mg of L-Carnitine and 200mg of Q10 for over a month.  Is it helping?  I have no idea.

I do have a sense that I am physically capable of doing more.  That I can gradually and carefully start to build my strength.  Start to walk a could of minutes a day and build it up very slowly – start to use my muscles and get a bit stronger.  That whilst I still get tired, still get IBS, still get migraines, still get sore glands, still get aches – that I am able to be a little more resilitant to these symptoms and not push them beyond manageable levels.  And that moving and gaining strength could help ease some of these problems.

Now is that just applying a “normal” healthy person mentality to getting well?  Am I thinking like I always did before ME that you work to get better?  Am I tricked into thinking in old ways about an illness which isn’t something with a linear recovery or progression and I know doesn’t play by the normal sickness rules?  Or is this sense my body telling me what it needs – just like when I crave certain foods it seems to be because my body needs the nutrition?

What it feels like is that I’ve toddled along in my usual routine and levels of (non) activity and whilst I haven’t been looking – over the past month – my body has gotten a little better.  But because I haven’t been using those extra teeny tiny increases in capacity, looking back it seems a larger measure now.  Now large isn’t really large – it’s the difference between getting out of bed at 2pm and not 4pm.  Actually it’s feeling I may be able to get out of bed at 11am – or earlier – and that hasn’t been the case in the everday for maybe a year.

I don’t think I can know the answers right now about what I can and can’t do and what it might be or not be.

I think the only sensible thing to do is to keep trying and perhaps gently increase my activity levels very very slowly.  This means a new phase of determinitation and grit not to just attack things head on and whizz around in a flurry of activity.  If I have a migraine onset or an IBS flare do I stop?  Or do try again tomorrow?  Or do I keep gently pushing?

It’s those eternal ME questions I think.  It’s just that this is the first time since I’ve started coming to terms with this illness that I’ve started to see a real improvement and because I am now more concious I want to try and get it right.  But who can really know what right is?  So I just have to try.  Or not try.  And aybe the results will be the same whichever I choose.

And now my head is starting to hurt from writng this post and I wonder whether I have really made any improvement at all!


5 Responses to “Dangerous Days”

  1. 1 BBabe June 30, 2008 at 4:18 am

    I don’t have ME but as someone with chronic illness I know how you feel. When I feel good, I appreciate it but always wonder how long it will last.

  2. 2 ashysheela June 30, 2008 at 11:34 am

    yes – it’s like hold your breath and don’t put a foot wrong!

    I think just enjoy it! I hope it lasts for you and is something you can “build on” if indeed that is a controllable thing.

    Getting your body clock more in tune with a normal day i really belive can help you feel better, although i never know if i am able to keep those hours because i am better or feel better because i am keeping those hours! Typical eh? Probably a bit of both!

    I am so pleased that the D-Ribose is having some effect for you – i am unsure, although i want it to work so much!

    You mention those “eternal ME questions” – i think we should list them all, might be funny!

  3. 3 Martha Perry August 13, 2011 at 4:27 pm

    I have been on D-ribose (about 10G a day in all) about 4 months and it is the only thing that has decreased my severe fibromyalgia/CFS symptoms without causing the significant side effects that I have felt with all of the prescribed meds. I am more energized also. I do have the expected dilemma of what is too much and what is too little to do daily and sometimes even hourly. This is a helpful quote for me, “Many of us crucify ourselves between two thieves-regret for the past and fear of the future (F. Oursler).” Even I have some choices as to how I will live my life and I am disabled and on an IV med for inflammatory arthritis as well as on pain meds for that. Typical strong and controlled pain meds do not work for fibromyalgia and have side effects, etc. that make using them difficult but are not avoidable for me. D-ribose has been a miracle.

  4. 4 Regina Karley October 10, 2012 at 1:04 pm

    I just started takng D-Ribose less than a week ago for my Severe Painful and annoying Fibromyalgia. I am bloated and have constipation for 4 days. I am hoping that it is not a side effect from D-Ribose. I am going to keep taking it and be hopeful that it will make me feel better.

  1. 1 Can D-Ribose Make You Sick? « ChronicallyMe Trackback on April 3, 2009 at 2:46 pm

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Push It 11 Sep 2011

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