Warning shots, what’s normal & what ifs…

1 Jul
The What If Road is a long one... Photo credit: Morgue Files User anairam_zeravla

The What If Road is a long one… Photo credit: Morgue Files User anairam_zeravla

Going down the ‘what if’ road is always dangerous, but never more so for me than when thinking about my health in the years leading up to my total collapse with ME/CFS.

What if I had listened to my body more? What if I had paid attention to the warning shots my body began whispering to me, then telling me slightly louder, then full throttle screaming at me? What if I hadn’t just assumed all the oddities my body kept showing me were normal and therefore ignored? What if I hadn’t been so blind to the bleeding obvious, that something was fundamentally very wrong?

Would I be as sick as I still am today, 2 years 7 months and counting from when I did finally stop and listen to my body? As I say a dangerous road to go down…

Here is a snapshot of some of the warning shots I didn’t heed…

  • Throughot my second year at Uni (2005) I suffered from bloating, constipation, stomach cramps and abdominal pain. This was eventually diagnosed as IBS;
  • I realized early on that wheat, gluten and sugar were not Jess tummy friendly and excluded these from my diet. Over the years my food intolerance list grew to include dairy as well;
  • the weeks that followed the big house move, that marked Mr B and I moving in together, in summer 2007, I barely had the energy to get off the sofa; my whole body ached, I was so exhausted. I thought I’d picked up some random virus on our recent holiday to Greece. I remember plans to go out for a family meal were cancelled as I sat in tears on the sofa because my whole body hurt so much and I couldn’t understand why;
  • after a few weeks of feeling so bad I did eventually go to the doctors about these symptoms that summer in 2007, I was told the cause could be pregnancy, a kidney infection or diabetes. All blood tests came back negative and after six weeks or so the symptoms subsided and were subsequently forgotten and I carried on with my life;
  • until summer 2008 when I graduated from Law School. I finished my Law exams a few days before my friends so I went along to the exam hall on their last day to meet them when they finished. The journey to the exam hall took about 30 minutes on the Tube with a 10 minute walk at each end. I remember sinking down onto the steps in the entrance of the exam hall, waiting for my friends, practically in tears, the journey had exhausted me; everything hurt. Instead of going out celebrating as we’d planned, I remember tagging along not really feeling with it, until I gave up and my best friend and I went back to hers and I collapsed onto the sofa;
  • similar to the previous summer, in the first few weeks of freedom in summer 2008, I could barely get off the sofa. I was so tired and my body just ached and ached. But again as in 2007, after a month or so the symptoms passed and were forgotten.
  • throughout these years, after working out at the gym, however gently, I’d be shaky and weak, as if my legs couldn’t support my body, I would lie on the floor feeling lightheaded. At the time IΒ put it down to lack of food or water despite drinking throughout my work out and eating nuts and raisins as soon as I finished, now I can see that it was classic ME/CFS post-exertion malaise and profound fatigue;
  • two bad bouts of flu within 6 months in 2009, one gastro, one swine, each resulting in two weeks absence from work. Is it strange that a young ‘healthy’ girl got ill twice so quickly? I didn’t think so at the time. All I was concerned about was getting back to work; I pushed myself and went back before I was fully recovered;
  • I remember evenings leaving the office feeling like my feet and legs weren’t really touching the floor. I can see myself now walking along in my Ugg Boots feeling as if I was floating, as if I no longer had control of my lower limbs;
  • I frequently woke up bolt upright in bed screaming in agony as my calf muscle cramped up; Mr B would look at me with startled eyes as I sat gently massaging my poor muscles; is this normal for a ‘healthy’ girl in her mid 20s?
  • similarly I’d wake up in pure pain as several of my toes had gone out of joint and with cramp in my foot; again is this ‘normal’ for anyone? Never mind a ‘healthy’ young girl?
  • in April 2010, Mr B and I went to Egypt on holiday and moved house all in the space of 10 days (it wasn’t meant to fall like that, the Icelandic Ash cloud delayed our holiday departure by a week). Following this I was exhausted,my body ached and I felt physically drained; as if I had no energy left in me. This subsided after a couple of weeks so I ignored it and got on with life – are you noticing a theme here?
  • June 2010 saw me interviewing for qualification jobs at my law firm. I suffered terrible nervous diarrhea (the opposite of my usual blocked bowel state) . I was shaky and sweating buckets with each of these attacks;
  • Autumn of 2010 saw me qualify as a solicitor and take on my new role as a corporate solicitor. The stress, pressure and hours were insane. I was permanently exhausted and experienced frequent ‘shaky’ spells; headaches and perpetual exhaustion;
  • for most of 2010 I hadn’t had a proper period, even though I was on the pill and my cycle had been like clockwork up until this time; I’d bleed a little and spot during the 3 weeks of my pill pack but come my free week no period would materialize; I did umpteen pregnancy tests, all negative;
  • the breast pain mentioned in a previous post was with me from 2009 on-wards. I did actually go to my GP about it mid 2010 but was dismissed with a new pill to try;
  • throughout these years I think it only fair to say I was a nightmare to live with. I was perpetually emotional and irritable. I was obsessive about cleaning and housework, a complete perfectionist, constantly pushing myself to do things at home I thought were expected of me; why Mr B stuck around is beyond me…
  • during the acute episodes of post viral fatigue already mentioned and in particular in December 2010 in the midst of the horrific flu virus that became my eventual ME/CFS downfall, I suffered lightheaded-ness and dizziness to the extent I felt as if I was floating out and above my body when lying in bed at night; I seriously thought I was dying;
  • and then on January 2nd 2011 I finally did stop and listen to my body. Well I was forced to by my parents and Mr B. I had walked up the street to the corner shop, literally no more than 100 yards from our front door but by the time I got back I was utterly exhausted. My legs felt like lead weights, I could barely lift my arms they hurt so much, I couldn’t stop crying, I was shakey, sweaty and just.felt.awful. And yet I was still thinking I’d be well enough to return to work in 48 hours time when the Christmas break ended…I didn’t go back to work, instead I went back to my parents where I spent 3 months on their sofa. I had finally stopped and listened.
No bounce left. Image credit Roger Hargreaves.

No bounce left. Image credit Adam Hargreaves.

Everyone’s demise/fall/collapse (trying desperately to think of a positive way of describing it, but failing…) into a chronic illness such as ME/CFS is different. For some it’s sudden. For others it’s gradual, like it was for myself, with acute episodes along the way that somehow I managed to keeping bouncing back from until I had no bounce left.

When that final acute trigger came a long in the form of a nasty nasty bad cold flu virus in December 2010, at a culmination of a prolonged period of chronic stress and pressure, and of course many other factors besides, Β I finally had no choice. My body at this point had given up trying to be subtle with telling me something was wrong. It did the only thing left; the only thing that I couldn’t possibly ignore; it collapsed. And that was that. Two years, 7 months on, I’m still trying to scramble my way out of this ‘acute’ episode.

So again what if I’d heeded the warning shots earlier? Again a dangerous road, and for now one I’m not going to delve into any deeper.

All I will say now is that hindsight is a wonderful thing. I’ll explore that further next post.

Do you look back and see warnings that you missed? Symptoms and alerts that could potentially have prevented your ME/CFS or other chronic illness from taking over? Or did it come out of the blue? Answers on a post card please…or in the comments box below πŸ™‚

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22 Responses to “Warning shots, what’s normal & what ifs…”

  1. fabulouslyfreefrom July 1, 2013 at 8:07 am #

    Thank you for sharing your story , has Coeliac disease been ruled out?

    • myjourneythrume July 1, 2013 at 5:59 pm #

      Thanks for reading and commenting. Yep coeliac has been ruled out, I was so hopeful when I had the blood test that coeliac might be the answer, but sadly not. Though I don’t eat gluten, I’m severely intolerant, it makes my fatigue and pain much worse not to mention what it does to my digestive system!

  2. BONNIE JOHNSON July 1, 2013 at 8:52 am #

    YES, I IGNORED SIGNS ALL MY LIFE. BUT NOONE WOULD HAVE GOT IT! I FIGURED IT OUT 1ST BECAUSE I’D HEARD ABOUT CFS FROM FRIENDS WHO HAD IT & THIS TIME I KNEW I WAS DOWN FOR THE COUNT & WOULD NOT BE GETTING BACK UP TO FIGHT ANOTHER ROUND! OH, I TRIED MANY THINGS TO TRY & GET BETTER BUT NOW AT 68, I JUST DO THE BEST I CAN & ENJOY THE BETTER DAYS AS WELL AS HATING THE BAD ONES!!

    • myjourneythrume July 1, 2013 at 6:01 pm #

      Thanks for reading and commenting Bonnie. I think that is a very good attitude, make the most of the better days and hate the bad ones! Sadly unless they magically come up with a cure, I think that is the best and only answer to this horrible illness.

  3. Chronic Pain Heroes July 1, 2013 at 9:29 am #

    I saw so many similarities in your story. I too have gone down that slippery what if slope. I too pushed and pushed until my body gave me no choice but to stop. I try not to ask those awful what ifs anymore. I am trying to finally figure out what my life is going to look like now. I can’t do any of the things I used to love doing. Now I try to delight in simple pleasures. I just bought a bird feeder and love to sit on the deck watching the little birds flying back and forth. I enjoy reading, and I now have time to study the bible. I meet amazing people like you online; brave people sharing their lives to help others.
    Thank you for sharing your life to help us. God bless, Kristina

    • myjourneythrume July 1, 2013 at 6:04 pm #

      Thank you so much for your kind comment Kristina. I too have recently become more accepting that this is what life is for me. We have to all try and get on with life and lead the best life we can within the restrictions this debilitating condition imposes. But I think that acceptance only comes after time fighting and struggling. I guess it’s a natural progression. Relishing the small things in life is what it’s all about and the best way to be I think.

  4. Jules July 1, 2013 at 9:55 am #

    Oh yes. So depressingly familiar. I had ‘flu, a reaction to antibiotics, Slapped Cheek Syndrome (???), a lump in breast that needed investigation then was removed (benign), stress+++ at work when I went back, gut problems (I tried changing diet but it didn’t help) persistent chest infection. By then I was totally exhausted. Had a year off to recover but went back too soon (like you a pattern repeated during the year I became ill). After struggling at work fir a year I had to admit defeat. Looking back, now I can see times when I was more exhausted than a healthy young(ish!) woman should have been. I think ‘if only. . . . ‘ but it’s too late now. Waiting for someone to find a cure or invent a time machine!

    • myjourneythrume July 1, 2013 at 6:11 pm #

      If only they’d invent a time machine. The way things are going I think that’s more likely to be invented than a cure for ME/CFS! The ‘if only’ and ‘what ifs’ path is natural and I think inevitable at times but now I try to think at least I did stop when I did. Things could be worse (and they really could be, tho sometimes I struggle to see that). I tell myself that ME/CFS actually saved me. Who knows where I’d be without it but I suspect I’d still be working mental hours as a lawyer, too stressed and exhausted to enjoy life and maybe on my way to a heart attack or drinking myself into an early grave with medicinal wine! So perhaps ME/CFS is a blessing in disguise…perhaps.

  5. starrystez July 1, 2013 at 2:27 pm #

    Hi there, yes I totally relate. I kept an illness diary for the first few years and looking back I can see how much I pushed myself to keep going and ended up relapsing as a result. I wish I’d made the most of what I could do rather than trying to do more. I feel sure that if I had gone at a more steady pace I could have sustained a higher level of activity long term. But that isn’t my fault – and it’s not yours either. We didn’t ask for this disease and we get little or no medical treatment for it. It’s natural to try as hard as we can to keep going because that is the message so commonly given by doctors and other people. What I try to do now is work with what I can do and take it steady. Since decreasing stress in my life, I have stabilised, although I’m severely intolerant to any activity including walking. I wish you the best. Hindsight can be painful but it’s in the past and you did the best you could at the time.

    • myjourneythrume July 1, 2013 at 6:17 pm #

      Thank you for your lovely comment. I’m exactly the same now – try and work within what I can do. I don’t always succeed but I’m much more stable when I manage it. ME/CFS wasn’t a word in my life during the years I wrote about in this post, I didn’t know I was ill. Life became easier in some ways (harder in others) after I was diagnosed and since then slowly I’ve learnt to accept my limits. I’m much more stable and in control now (mostly at least) hindsight at least shows me that!

  6. The Chronic Situation July 2, 2013 at 6:44 pm #

    Hi Jess
    That’s a painful post to read, as I imagine it was to write. It is all still fairly recent for you (relatively) so I suppose ti still hurts to think about it. But it is a destructive way to think, and it is too easy to begin obsessing about what you could have done better, or different. I have been there, of course, I think we all have, and it is important to understand that CFS is not our fault, and we are not to blame for what has happened. There are plenty of people who have abused their bodies in much worse ways than we have, (just saw Keith Richards there in Glasonbury at nearly 70 years old prancing around the stage, can you imagine all the toxins he has put in his body over the years?!) who came through it and never suffered anything debilitating or irrevocable.
    You had no way of knowing what was going to happen. None of us had. My experience here, yours sounded familiar…
    http://thedamnchronicsituation.blogspot.ie/2013/05/so-how-did-it-all-begin.html

    • myjourneythrume July 5, 2013 at 4:39 pm #

      Hey, thanks for reading and commenting. It wasn’t actually that bad writing it. It almost felt soothing or releasing or something, as if I was cleansing my body of those thoughts. Acknowledge and move on. You’re so right dwelling on the past is really destructive. And pointless. But I’ve never really done that. Of course I wish I could go back and do things differently. Of course I wish I wasn’t so sick. But you’re right, I had no way of knowing what was to come, if only we were psychic then it’d be so much easier! thanks for your blog link, I look forward to having a read.

  7. Katarina July 2, 2013 at 9:05 pm #

    Thanks for sharing! It sounds all too familiar to me as well, with the exception that my early episodes were pain rather than fatigue
    oriented. A year ago I was desperately trying to finish grad school as my body slowly fell apart and no amount of medication, accommodation, or technology could enable me to meet the requirements. Every minute and movement revolved around wringing out the most amountof work with the least amount of pain. After I finished I realized how toxic and detrimental the whole experience was and have been trying to undo all the knots I caused ever since!

    • myjourneythrume July 5, 2013 at 4:32 pm #

      I’m glad you could relate but wish you weren’t in the sick boat too! I know exactly what you mean about trying to undo all the knots that you caused ever since, that’s exactly how I feel. But what’s done is done. No point wasting our precious energy dwelling on what we should/could have done. Though it was very therapeutic writing the post, almost cleansing myself of those thoughts if you know what I mean? Or does that make me sound mad!

  8. Chronic Pain Heroes July 2, 2013 at 10:11 pm #

    Reblogged this on Chronic Pain Heroes and commented:
    i find it fascinating how similar our experiences are. This goes beyond mere coincidence. I hope the medical community learns to tap into the wealth of information chronically ill patients provide online all over the world!

    • myjourneythrume July 5, 2013 at 4:29 pm #

      Thank you so much for the reblog! I’m glad you can relate tho I’m really sorry that you’re sick and going through this too. You’re so so right. It is way beyond coincidence. There are just too many of us in the same boat. That is what I love about blogging, it has opened up this whole new world to me.

      • Kristina Schwende July 6, 2013 at 6:56 am #

        I know what you mean. I will say that while I am learning so much from reading your blog, I am very cognizant of the fact that this is your life. Everything you are dealing with is real. I am very sorry that you are also dealing with incredibly difficult health issues. Thank you for having the courage to share it with the world so that people like me can feel “YES, there is someone out there who knows how I feel!”

  9. tiredtechie August 12, 2013 at 1:01 am #

    Wow, that sounds like a rough ride. I had a few hints in the months leading up to my illness but nothing quite as dramatic as your. In hindsight, yes, the signs were there, but in between I was doing quite well and feeling happy, in fact happier than ever. But if I had known what the signs meant, I don’t think it would have made any difference. I was by no means ill enough to take sick leave and didn’t have the means to take an unpaid holiday. Even if I had I really don’t think it would have changed anything. My illness came very suddenly, over the course of a week, but it had been in the works for months. I think there just came a point where my body could no longer compensate for it and that was it. But the underlying dysfunction had probably been going on for months or years with little outward evidence. That’s my hunch, anyway. I hope we find out the truth some day!

    • Kristina Schwende August 12, 2013 at 2:07 am #

      I agree. I too have looked back to see if I could have done things differently. What if I had listened more? Would I be well today? Like you, I could not afford to take time off work. I had to keep pushing my body to do more than it could, until it finally just had nothing left. Let’s pray they do figure this illness out so that others don’t have to go down this same broken road.

      • myjourneythrume August 13, 2013 at 9:07 pm #

        I think until I was totally broken and literally couldn’t go a step further I wouldn’t have stopped even if I had known then what I know now. We tend to learn lessons the hard way don’t we? I agree and pray too that someone somewhere gets the answer that prevents others going through the same thing.

    • myjourneythrume August 14, 2013 at 10:19 am #

      The truth seems so elusive doesn’t it?! I totally agree about my body reaching the point where it could no longer compensate. That was the point of collapse. I think it would be really hard to stop before your body actually makes you. Why would you, whilst you can, you do.

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  1. ME / CFS: be assertive for the sake of your health | my journey thru M.E. - July 4, 2013

    […] return to my hindsight and what if themeΒ in a few […]

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