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I think Im slowly getting worst again over time

Blog entry posted by taniaaust1, Nov 26, 2011.

I was up on my feet today only for 30-45mins and with only that now have sore calves and there is also like over active nervous system feel in my legs making me want to move them while at the same time knowing that will bring in the ME more (restless leg syndrome?..thou they currently arent all twitchy).

Im worried about getting the calf pain for basically not much reason at all (I wouldnt be concerned if I knew I'd over done things and triggered it..but this feels like its happened for no reason at all). It could mean Im soon going to be heading into my old symptoms of permanent muscle pains (and FM with me usually follows that. Ive been lucky and havent had FM for a long time).

Im usually able to double that time in a day on my feet, if its broken up time, without causing worst symptoms.

My throat tonight is a bit sore (only a 2 out of 10..where 10 is swallowing like razors) but that has increased from about the 1/10 Ive had on and off for the past month and a half. It was sore too this morning when I awoke.

The cooler air has once again set of a cough. Ive had this cough off and on now for the past 2 mths...

I still have the insomina thou the new dose of melatonin I think now is helping a little as Im going to sleep now at 3-4.30am instead of 6.30am

Ive noticed Im getting more mind mind black out happening again. I had one while my boyfriend was talking to me the other day and today.. was having about 5 per hr while trying to watch a DVD (so kept on having to rewind it and watch parts, sometimes long parts again).

I also arent lasting the day awake anymore either.. Im falling asleep while doing things for past few days (this has been on and off for past couple of weeks) between the 5-7pm. Then by 9pm Im then wide awake.
With these sleep attacks..thou i feel tired some, I arent even aware Im about to fall asleep and just do. Today between 6-7pm I fell asleep on and off about 6-8 times in one hr completely disrupting what I was trying to do)

Im scared as I know I havent got any doctor who will treat my symptoms so the idea that Im worsening for no reason.. well is quite a horrific one to me as I have no idea where my slow worsening state (which has been worsening over past 2-8weeks) will end up stopping.

My body seems to be no longer in the stable kind of unwell state it was but in a very slow decline.

Possibly this slow decline over past 6-8weeks, worsening even more in past week or two, has been triggered off by me "trying' hard to get home support (which has been quite stressful but still hasnt happened) and by the small amount of advocacy I was doing.

Emotionally thou Im actually doing better then I was and my brain too...something is still improving there (I think the selenium or the molybdenum is still helping)..
its physically Im slowly declining in (thou I are having emotional meltdowns whenever I crash).
taniaaust1

About the Author

Doing a bit of a blog at http://forums.phoenixrising.me/index.php?threads/tanias-journal-of-drug-treatments-and-other-me-things.13903/page-4#post-273488
  1. Lynne B
    Hi, Tania, Hard luck! Take it easy with the cleaning. Try it in five minute bouts with rests in between like Nancy Klimas recommends. Safety first so, like you say, get rid of the broken glass first. I find vacuuming is best for glass and maybe you can sit on the floor while you do it. Think of shortcuts or easier ways to do things and do one bit at a time. Make sure you eat something simple but nutritious for each meal. Don't go without food and drink. And clean only the things you need so you can safely cook and eat your meals. Keep your spirits up. Just keep in mind that we're going to be well again sometime in the next few years.

    Good luck, Lynne
  2. taniaaust1
    Im finally out of bed... at 4.45pm. It took that long for the symptoms brought in from that 30mins or so time I was on my feet yesterday to come good. (Im now just rating the calf pain at about a .5 so its only just noticable ..almost back to normal).

    I forgot to mention too that I also had a fever or was just feeling feverish (often I do have an actual fever when Im feeling like that) again yesterday too. Fevers for the past few mths or so are becoming more common again mostly night fevers..usually low 38 degree Celcius ones (not enough that Im working up a sweat but enough to make me feel uncomfortable and overly warm).

    Now that Im up and condition has settled down from yesterday.. Im trying to work out how to make the best of the time I can be on feet today. It wouldnt be wise for me to be doing any more then 30mins after yesterday.. so it's going to be a choice between cooking or house cleaning a few rooms.

    I currently have broken glass all my bedroom floor as I got out of bed earlier to get a drink when I wasnt up to doing so, (had finished off the drink bottle by the bed so went for a big glass of something cool), and in my not good state dropped it.. shattered everywhere (I gave up having a drink at that point and then have waited all day to know Im going to be okay getting up)..
    so now i have broken glass mixed up with clothing over bedroom floor. (so got to clean that too.. that time to clean that will have to be considered into any cleaning time I do).

    It sucks.. the trading 30 mins active on feet time with 12 hrs time it may put me in bed awaiting for the symptoms to stop flaring (if i dont do that, they get far worst very fast) and settled down again but I do have to clean house or I'll just end up depressed feeling like Im living in a pig stye... so are going to do that trade (leaving kitchen thou as that is way too much for. My boyfriend when he visits on Wednesday is going to have to do that for me like he unfortunately usually ends up having to do).

    Finally made up my mind what I will do with my 30 mins active time today.. it will be that cleaning over doing dinner.. i just cant leave the glass etc all over the bedroom floor.

    Why, why cant our doctors realise just how ill we are.