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“…or does the mind control the body? I don’t know.”

20 Jun

Yesterday I woke up expecting to finally be over the ‘flu after a week of hacking, choking, snotting, complaining and feeling like my head is going to explode. I expected that even I – she of little immune system after taking steroids – would have shaken it off by now.

No. Of course I haven’t; that would be expecting too much. To add insult to injury, I developed a huge cold-sore on my lip, going down my chin and blistering like crazy. This morning (well, afternoon) I woke up, coughed for a while, realised I had no energy and sunk back into bed. A quick glance in the bathroom mirror confirmed that the cold-sore from hell has grown even more. I look like a mutant.

I’m frustrated. Today, a group of friends have gone to the beach to celebrate the solstice. We do it every year; party until the sun rises the next day. I missed the last party due to illness, and I’m missing this one too. It just doesn’t seem fair.

I sometimes wonder if I make things worse for myself; that perhaps I’m so used to feeling sick that I expect it, and maybe I pretend things are worse than they are. I’ve always wondered that. A lifetime of illness isn’t normal, after all. I was sick when I was born and, twenty-seven years later, I’m still sick. I’ve had ear infections. Urine infections. Infections in my cervix. Almost daily diarrhea since I was a child. I went into anaphylactic shock as a baby. My ovaries are covered in cysts and my cervix is full of scar tissue. They removed it, but it comes back. They give me antibiotics for pelvic inflammatory disease but they don’t work. My gallbladder got infected, and my bile duct was blocked; which caused pancreatitis. It took months to recover from having it removed, and again, I was left with scar tissue and a life-long need for strong anti-acids to cope with stomach acid going the wrong way because my bile duct was damaged.

I have a rare type of eczema on my hands and feet; one which can’t be treated by even the strongest steroid creams. I’ve always been prone to eczema breakouts, but this is something else; this breakout has lasted over a year. I’ve been given every cream available, and was turned down for expensive treatment so I’m left with no choice but to live with it. It burns; I need regular antibiotics to combat the infection which constantly breaks out in the cracks, and my skin is scarred from how deep the eczema goes. Most people with this type have it for life, with occasional remission.

At the present time, I am under the care of one of the top rheumatologists in the UK, along with the dermatology department, the bio-mechanics clinic and my own GP. I’m waiting to be referred to urology, and possibly back to gynecology. Sex has become incredibly painful and, afterwards, it burns for hours. The slightest pressure is causing my skin to tear, even on the outside.

Logic says I can’t be inventing any of this because my medical records are stuffed with consultant’s notes, diagnoses, test results, second opinions and operations. Each and every problem has been documented and proven to be real. Yet I still question myself.

 
37 Comments

Posted by on June 20, 2012 in Every day life

 

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37 responses to ““…or does the mind control the body? I don’t know.”

  1. rachelmiller1511

    June 20, 2012 at 6:35 pm

    I’ve had eczema on my hands before and it was excrutiating. I had to get my partner to wash my hair for me! Shampoo made it sting like hell!

     
    • halfwaybetweenthegutter

      June 20, 2012 at 7:05 pm

      Eeeeesh that sounds awful! Luckily the hand eczema isn’t so bad; it cracked and got infected in the past, but it’s more like tiny blisters now. Just itchy as sin.

       
  2. Roxy

    June 20, 2012 at 6:42 pm

    Didn’t want to “like” this, but wanted to “like” as always your total honesty. Sending love x

     
  3. The Quiet Borderline

    June 20, 2012 at 6:43 pm

    I’m finding it very difficult today to read about such suffering. Such great people going through such troubles.

    You don’t deserve this suffering. I’m so sorry you have had to go through all of this.

    I really wish you the very best and wish you a speedy recovery from the flu. And darn, that cold sore sounds horrible too. I hope it goes very soon.

    Feel good. X

     
    • halfwaybetweenthegutter

      June 20, 2012 at 7:02 pm

      Thank you so much <3 I'm getting so tired of this flu now. My mother has it too, so the house is quickly turning into a plague hospital! And thank you so much for your kind words; they really mean a lot to me. You're going through so much, and I really appreciate the empathy. It helps. x

       
      • The Quiet Borderline

        June 20, 2012 at 7:22 pm

        It’s the least I can do, is offer you some positive words. Wish I could do more.

        Wishing you and your mum well.

         
  4. stuff I said

    June 20, 2012 at 7:02 pm

    I am sending an official protest to the sick gods! You should not have to miss the celebration, nor should you have to spend one more day in your sick bed. Feel better, I’ll let you know when I get a replay. ;)

     
  5. faithhopechocolate

    June 20, 2012 at 7:56 pm

    Sending more love & hugs.

     
  6. DisplacedHousewife

    June 20, 2012 at 8:09 pm

    My husband suffers from eczema on his face and apart from the pain of it, the embarrassment of it has left him with a huge complex about his looks. It breaks my heart to see him in pain,especially when there is nothing I can do to help him.Its not as bad as what your describing,but seeing how he is suffering makes me feel more for you and how your coping.
    As for the rest..no,it cant ALL be in your head! From the sounds of it,that’s probably the only part of you not falling to pieces ;) Bah on the flu – if you can manage to stand,I say have your own party at home. Even if its just with couch syrup instead of booze. Do at least one little boogy in celebration and then back to bed and many prayers for a fast recovery. I really hope you feel better soon,being ill is the suckiest thing.

     
  7. Gledwood

    June 20, 2012 at 8:32 pm

    You get regular ear infections? What a nightmare… I had the first one in over 15 years last week and it nearly drove me crazy. And I say that advisedly, seeing as I actually have BEEN crazy…

     
    • halfwaybetweenthegutter

      June 21, 2012 at 9:31 pm

      It’s pretty close to crazy! I don’t have so many any more, but had them constantly through my childhood and early teens. They were hellish. I had a really bad one a few years ago and went deaf for two weeks; I hated every moment, and it was SO painful. It could easily drive anyone to madness.

       
  8. judithatwood

    June 20, 2012 at 8:34 pm

    I wondered the same thing, about how really sick I was. If you have fibromyalgia, eczema, and BPD, I can tell you right now that you are not exaggerating when you say you are sick. 8-)

     
    • halfwaybetweenthegutter

      June 21, 2012 at 9:30 pm

      Thanks Judith <3 I just wish I could believe that when I'm doubting myself.

       
      • judithatwood

        June 21, 2012 at 10:49 pm

        You know, I believe that you will. Think to yourself in the morning, “I have a reason and the right to express sadness, anger, confusion, and frustration about my limiting conditions. I choose to feel what I feel. Other people’s opinions don’t affect me, or if they do, I recognize that I am letting them do so,” or some other reassurances you yourself come up with. You, like I, have a lot of blame for ourselves. It’s coming up on time to let that go.

         
  9. Gledwood

    June 20, 2012 at 8:34 pm

    … And I hope you get well soon… I did mean to say this in my previous comment but the computer has been running off with things I tap in and posting them too soon.

     
  10. Marilyn Armstrong

    June 20, 2012 at 8:49 pm

    I have nominated you for the Lovely Blogger award. You deserve it. Your honest and your willingness to put yourself “out there” quite probably helps a lot more people than you will ever know. Congratulations. I know this isn’t your first nomination, and I’m equally sure it won’t be your last!

     
    • halfwaybetweenthegutter

      June 21, 2012 at 9:25 pm

      Oh, thank you <3 I really am touched by your comment. I don't quite know how to take it, so I'll just say thank you and it means a lot.

       
  11. gypsy116

    June 20, 2012 at 9:54 pm

    I think because so much of the time other people question the validity of chronic illness, because they dont know what its like and cant fathom that its possible, it makes it easier for us to start questioning ourselves. I do the same thing. Thinking of you, and giant hugs.

     
    • halfwaybetweenthegutter

      June 21, 2012 at 9:19 pm

      Giant hugs right back at you, luv <3 I wish you didn't question yourself; okay, so I can talk… but I hate to think of anyone else feeling like this. It's all so confusing.

       
  12. Amber

    June 21, 2012 at 12:28 am

    A couple years ago something was happening that was very strange… My heart would pound and I would get chest pains. At nights I couldn’t sleep and my head would pound. When I would try to fall asleep I would jerk awake and my heart would pound even more. Eventually I didn’t have the desire to eat. I would drink a ton of water and minutes later I would pee it all out. I had went to the hospital 4 times and the doctors told me everything from urinary track infections, kidney infections, and chest pain…. They gave me antibiotics and vicodin, the vicodin caused my chest pains to become worse.

    The only person that helped me was my Holistic Chiropracter (which I had been going to for years).Even when she told me that my adrenal glands were not functioning right, I really didn’t believe her. But since I was on my last straw and fed up with doctors. I gave the supplements a try. Slowly but surely, I began to feel better and then waaay better. Too this day, I can’t believe how much she did for me helped me….

    Maybe you should try some holistic remedies to maybe aid with what you are going through now. Maybe it wouldn’t hurt to do some research on your symptoms and some holistic remedies that might help you feel better…

    I am sorry all of these illnesses are happening to you and to be honest it’s just not fair for you. I wish the best for you and I hope things get better…

     
    • halfwaybetweenthegutter

      June 21, 2012 at 8:13 pm

      Unfortunately, holistic treatment was the first thing I ever tried. I tried it for years, because I was dead against man-made chemicals going into my body (the irony of that fear doesn’t go unnoticed, now!) and I wanted to be as gentle with myself as possible. I tried everything. Still do, sometimes, but apart from peppermint for stomach upsets, nothing worked. But thank you anyway; I’ve always wondered whether seeing a chiropractor would help. They’re just so expensive – I seriously doubt that I’d get one on the NHS :/

      You’re not the first to mention adrenal glands not functioning properly. I had them tested years ago and they were fine, but maybe it’s worth another test?

      Anyway, I really am glad you’re feeling better. It’s amazing how sometimes utter mistery can be solved by something really, really simple. I’ve found that the NHS never want to go the simple route.

       
      • Amber

        June 23, 2012 at 6:01 am

        Hopefully you can find things that will work. It’s so easy to give up when things don’t go right. But keep positive as much as you can. And honestly if people took the simple route instead of the over drawn out route, things would be a hell of a lot easier.

         
        • halfwaybetweenthegutter

          June 23, 2012 at 1:22 pm

          Cheers, Amber. I agree! How much easier and cheaper is the simple route? Loads. Yet it never seems to be done that way. The mind boggles.

           
  13. Human In Recovery

    June 21, 2012 at 1:51 am

    It’s hard to “like” something so sad and difficult. You have definitely had more than your fair share and it isn’t fair – sadly fairness has never been requisite in experiencing life even though we are expected to behave fairly. Gentle hugs to you.

     
  14. NZ Cate

    June 21, 2012 at 7:50 am

    Yeah, liking this is a hard one but I really appreciate you being so honest because today I have been asking myself similar questions. Frustrated by not being able to live a ‘normal’ life. I very much like the idea of an official protest to the sick gods (actually when I typed sick it came up as suck and that’s what all of this is – it sucks. And certainly none of us (including you) deserve it. <3

     
    • halfwaybetweenthegutter

      June 21, 2012 at 8:02 pm

      Thanks Cate <3 You're right, nobody deserves all this. It makes me feel quite angry in a way to know others have to live like I do; it just doesn't seem fair. It's hard not to feel like it's all in my head.

       
      • NZ Cate

        June 22, 2012 at 5:40 am

        I know. I also keep hearing that everything happens for a reason, but I think really? Surely there doesn’t need to be this much suffering.

         
  15. midlifeblogin

    June 21, 2012 at 5:33 pm

    Better days will come. I feel for you and hope that you have relief soon. Life is very difficult for someone who has multiple health issues. I miss many get-togethers and outings with my friends due to a multitude of illnesses. It’s horrible when steroids rape your body of its ability to ward off infections. What a double edged sword they are. I’m thinking of you and hope that you feel hope, comfort and peace very soon.

     
    • halfwaybetweenthegutter

      June 21, 2012 at 7:58 pm

      Than you, luv <3 Steroids are a double-edged sword indeed; on one hand, they've helped a lot in the past, but on the other… well, my immune system is shot, and it shows. Saying that though, I'd take them again in a heartbeat; I felt "normal" for the first time in, well, ever. I actually RAN. Haha, I couldn't imagine running now.

      Again, thank you so much for understanding, and caring.

       
  16. whereimstaying

    June 21, 2012 at 9:16 pm

    I don’t want to like this one either, so I will just comment :) Damn that’s awfulness that you deal with. Life is a strange, sick joke at times isn’t it. :/

     
  17. jo

    June 23, 2012 at 7:38 pm

    I sometimes think if I throw all of my meds away, change the water I’m drinking and the air I’m breathing, that I will wake up better. That it will all go away.
    We fight the good fight, keep your chin up!
    Hugs…Jo

     

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