Ups and Downs

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I hate it when the beast of fatigue drags me down for there is no resisting that monster, I am out for the count until it chooses to release me again.  Neither does it operate on a civilised timetable either, it can sneak up at any hour, night or day.  In my case, after a long, restless night  it usually pulls me under at about 7h.  Cheers for that.  That’s yet another day messed up.

It’s hard to explain how you spent your day, or perhaps just plain embarrassing to, when you require at least eighteen hours sleep.  Staying in bed equates too easily to laziness, an indulgent lie in until say 9h may occasionally be justified but how can I justify the hours and days that pass in an exhausted haze?  You feel defeated, a failure.  So when you shakily do the maths and find that gives you another six hours, you, for a brief gleeful moment, feel that you have time to get on with your life.  Then you remember that in those remaining six hours, you will still be bed bound and resting, saving your strength up for necessary trips to the bathroom and kitchen.  There’s not a lot else that you actually have the strength or time for.

This was the worst bout that I have had in a very long time, perhaps even since my original two bouts back all that time ago.  There was absolutely no way that I could fight the tiredness, no way that I could push through or just try to ignore it.  I was weak and achy all over, with the pains concentrating either in my hips or my back.  Lying on one side or the other would give me that mean, painful numbness or sharp pins and needles so I had to keep turning, trying to find a new comfortable position whilst negotiating every very painful lump in the mattress or pillow, or just a fold of clothing.  My circulation, if possible, got worst and heat sources just scorched me rather than warmed me through.  When I was rough last August, I was frozen.  Now in December, I kept burning up.  But no temperature.  I checked.  Sometimes my heart felt like it was racing or going too slow.  But again, it never showed on counting.  My poor posterior got worn out anytime I tried to sit up for a period of time.  Then I got hideously bad sweats (I mean, a lady should never sweat anyway, just glow apparently) but there I was shivering cold and rivers pouring down me.  I lost my appetite and that my friends, is a very bad sign.  To walk to the bathroom or kitchen (we live in a flat so fortunately everything is on one level) was like undertaking a marathon, leaving me shaky and desperate to lie down again.  (I promise you that I am really not that unfit).  Ironically, despite sleeping so many hours of my life away, this is when my insomnia is also at its worst.  Exhausted but unable to settle, wasting away energy in tossing and turning.  So not fair.  In fact, it sucks.  Absolutely sucks.

However once I finally started sleeping again at the beginning of January, things looked up remarkably quickly.  The perfect bedtime routine was to go to bed by about 19h then get up again at about 23h, midnight which is unfortunately when I am at my brightest.  Make some macaroni cheese and then do some word puzzles, potter on the computer and then go back to sleep in the small hours.  Slowly there were more hours between waking up and going to bed at 19h.  Oh, and even less naps.  This magical formula worked for me, kicking the worst of the bout into history.  (I hope, I’m still wary).

Did I mention the macaroni cheese?  I like macaroni cheese, pasta is my go to food and I have a wee thing for cheese.  Macaroni cheese is my number one comfort food.  Although admittedly, depending on my mood and the weather, pizza is a competitor.  Well my unhealthy relationship with the stuff descended to new lows, the world’s biggest macaroni cheese obsession in fact.  That coupled with the fact that I was also crazy about chocolate milkshake (and I’m not usually a fan of that) means that there will be certain consequences of this fad diet that will live for me for quite a while longer, regretfully.  But at the time, I decided that it was better that I ate than starved.  There wasn’t really anything else I fancied, I mean, I couldn’t face tomato at all which is really weird.  And not good in a house where, as I said, pasta is the main meal.

But there are always new challenges to face.  The hardest thing about feeling better is the unbridled optimism that comes with it.  I am not by nature an optimist, you may have noticed, but I fall into the honey trap every single time.  Feeling better is of course a relative term and while I love the new-found freedom of a fog-free head and having the energy to make and eat a meal, it’s way too easy to go overboard.  Without the fog, I can rise to whole heap of new challenges and besides which, I’m seriously bored of being stuck in bed and there’s so many things that require urgent attention right now because I have been stuck in bed so long.  So I tend to over do it.  A little.  A lot.

So January started looking up.  (Although bizarrely, the pain has actually got worse).  I’ve done quite a bit, had a lot of help and encouragement from friends that I hadn’t really even realised that I had, been out socially even.  Slowly trying to find a new balance, a new rhythm.

But February?  Well the storms clouds came in with the new month and I have to admit (as I squirm in shame at my so-called laziness) that I have literally spent the week in bed.  Feeling totally and utterly rotten, paralysed almost and not at all able to pull the duvet from off my head.  It has sucked.  And I’ve been totally unable to do anything about it.

At first, I thought I was ill again.  The tired kind of ill.  But that didn’t quite feel right.  Ill, some stomach bug or ‘flu mixed up with the dregs of the worst bout of tiredness in years?  Other than the two vicious stomach attacks this week which involved strange reactions to perfectly allergen-free foods, breathtaking nausea and discovering that, although it’s a rotten unpleasant experience, I’d rather just throw up than find that I don’t have the strength to actually puke anymore, there were no other symptoms of a stomach bug.  ‘Flu didn’t quite cover it either, it’s a little bit hypochondriacal anyway.  So, guess what?  I had to admit to myself just who had I fallen victim to.  Yeah, that other old friend.  Yeah, you know, that one.  I can’t remember experiencing such a paralysing numbness before though, I was just frozen to the spot unable to do anything or even move.  It’s got to be bad when you can’t even motivate yourself to get out of bed when your belly is empty or worst, your bladder is desperate.

So, yep, this week sucked but today I was up and about again, finally.  Well you know, relatively.  I’m still going to require inordinate amounts of rest but at least I’m at a point where I have to remind myself, and force myself, to take a nap, to rest during the day and my hours are a little bit more ‘normal’.

You know what they say anyway, if it’s not one thing then it’s another.  That’s my life.  One thing or another, one thing after another.  But if you don’t laugh then you cry.  I’m too tired to do either actually so I’ll just plod on.  There’s plenty more of February a-waiting.  And yet another pile of washing up with my name on it.

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17 thoughts on “Ups and Downs

  1. Okay, this is going to sound strange. I have a friend who has CFS. I assume this is what you have as well. She did all sorts of research on her illness and learned there is a relationship between tick borne diseases, like Lyme, and CFS.

    She went on a regimen of both herbal and traditional medicine treatments. It took time, but she’s an entirely different person now. I remember how tired she always looked, but not anymore.

    This may have nothing to do with you and how you feel, but I thought I’d mention it. This woman was very surprised to find the connection and that the treatment actually helped her. You may already know all about this. I’m sure it’s online, but I can tell you, for my friend it was a life altering discovery.

    I wish for you many more good days than bad:~)

    • Yes, CFS and ME are often used as interchangeable descriptions. I appreciate you sharing your friend’s experience, it really highlights how important it is to have everything thoroughly checked out before the doctors come to the diagnosis of CFS/ME as the symptoms can overlap with so many other conditions. I’m glad though your friend discovered the real nature of her illness and is now doing better. Thanks again. :)

  2. Wow it sounds like we have had the same February. After starting a new allergy diet in December, I had the best energy levels that I can remember. January – well I was a bit tired but it was party season, and still generally felt good. February – seriously: fatigue/exhaustion, anxiety, stomach complaints, sinus problems, etc etc. At the moment I am trying to deal with my emotions as I feel that the energy levels I had in December were just some teaser, and that they won’t return :( I feel for you.

  3. Ahh.. sounds like a tough break for you. Also, Mac & Cheese is my comfort food also. (It’s how I keep my girlish figure. LOL.)

    PS – Thanks for stopping by my blog. I really like you writing and believe you have a new follower.

  4. I’m so sorry to hear about your fatigue. That’s a terrible affliction. I had something similar all of last year and it turned out to be extreme hypothyroidism. I would wake up feeling more tired than I did before I wen to bed. And I had zero energy throughout the day. Everything was such an effort. So I do hope that you are over it and that you will stay well and continue to improve.

  5. I ache for you. I can’t imagine what it must be like to feel that kind of debilitating exhaustion. I’m sure you know that it’s not at all your fault, but KNOWING that and FEELING it are not at all the same thing. Take care of yourself. Knit when you can. And I DO hope you are able to keep feeling better.

  6. Man, I fall into that honey trap all the time. What a difficult thing to deal with, especially since I’m sure people don’t understand or respect your situation. Hope you’ll be feeling better soon!

    • Thank you, a couple of good days and the world has changed for the good again. It can be harder dealing with other people’s views than with the actual problem as I’m sure you know. And you too! :)

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