Ups and Downs

Today, I am happy. I am feeling hopeful and calm. It was only three weeks ago, when I had my monthly appointment with the Good Doctor, that I was in a very bad place. Physically, on top of the same old baseline hell, I was still in the death-grip of the perma-headache, which, at its worst, is my worst symptom. Also, I hadn’t had any relief for weeks from IBS-C symptoms (and I really underestimated the toll it was taking on my body). My husband and I were having a difficult time ~ he was (is) overworked and I was (am) needing his company since he’s the only one I see day in and out. I told the Good Doctor that I was feeling very low and kept thinking I didn’t want to go on. Not suicidal, exactly ~ I very much want to live; in fact, just last night I said I’d be a vampire in a heartbeat (no pun intended) to achieve immortality ~ but feeling like I couldn’t accept this illness and I wasn’t strong enough to face it every day for the rest of my life. I said I was ready to consider antidepressants.

That night, I slept terribly (more terribly than the usual) and, in the morning, I feared the worse. However, once out of bed, I was smiling for no reason. Just smiling at the new day. I physically felt lighter. I emotionally felt happier. It was an incredibly dramatic change from the day before. My husband and I had a good talk, my insides relaxed (constipation eased up, bloating disappeared), my headache was gone long enough for me to listen to music and laze in the sun. On every level, I felt different. I saw a future, I could imagine happiness within this illness. I stopped taking Chinese herbs to see if they were causing the headache (the results are not conclusive, but it’s definitely improved). I decided to stop going to therapy and, so far, that has been a good decision. The Good Doctor had, in all seriousness, told me that there were some crazy things going on astrologically but they’d be ending soon. She said something about Mercury in retrograde and some other odd star arrangement and told me there had been so many tumultuous occurrences with her friends and patients, that she had looked it up. I’ve given up all my skepticism. What do I know? My menstrual cycle follows the moon, just like the ocean tides. Who’s to say Mercury wasn’t casting a black cloud over my head? Especially after all my concentrated connectedness to celestial energy during meditation. 😉

So, antidepressants are once again on the back burner.

Of course, the ups and downs continue. My period this month was so painful and made me so sick, that I was curled in a ball for days, wondering if I should go back on the birth control pill, wishing I had the nerve to get a hysterectomy, cursing the doctors who won’t test for hormonal abnormalities, tempted to try some hardcore opioids even though I know I have scary reactions to them…

My father came to visit and it was lovely. I was feeling okay, able to chat and play Trivial Pursuit (lying on my side in the recliner). But, on his last night, I had a meltdown. He had been asking whether I could eat Chinese food or Thai ~ just trying to decide what we were doing for dinner. I analyzed the meltdown for a long time. What made me retreat to my room to cry? Here’s what I came up with:

  • I was overdue for a rest and was feeling exhausted and shaky.
  • I had been sitting in the sun and was overheated.
  • Meals are always stressful because my diet is so restricted.
  • I didn’t want anyone to plan dinner around me when I might be too weak/nauseous/worn out to eat.
  • I am guilty that I am such a high-maintenance person now. I want to be able to say, “Yeah, I like everything, I can eat anything. Get whatever sounds good.”
  • The one thing I know for a fact that I react to is MSG and I have been told many times by restaurants that they don’t use MSG only to wake up the next morning blown up like a swollen Stay Puft Marshmallow Woman, unable to bend my fingers or open my eyes. I knew I could probably come up with something I could eat from a Thai or Chinese restaurant, but I’m scared of them. I stick to what I know (one of the blessings of working in restaurants was that I could read every label of every ingredient of every dish on the menu. One of the blessings of being the boss was I knew how clean the kitchens were; I could coach them to be as fastidious as I am about safe temperatures, cross-contamination and allergy info – plus, I could go in the kitchen and make myself food (don’t worry, all you chefs out there, I was very respectful of the line ;))).
  • Finally, and worst of all, in those moments before I burst into tears, while I was trying to come up with something easy to order from a Thai restaurant, I realised I was at that point where THINKING feels like running through quicksand. True brain fog is very difficult to describe. I thought I was experiencing brain fog when I was having lapses in memory and difficulty concentrating, but, just like the total exhaustion I was feeling this time last year was nothing compared to the cellular energetic collapse I experience now, I had no idea how bad “brain fog” could be. You simply can’t think through an issue or problem or question. It is terrifying! What can I order from a restaurant? And then, blank, dense cloudiness. Start again: Food. Thai. Go! I think, Chicken, no sauce…. And then blank again. It’s just too difficult. What’s the question again? It’s like my brain is panting, out of breath. And, I guess, that’s what it is: the brain is not getting enough oxygen.

In the end, my family went out to dinner and left me to rest. They brought me home a delicious steak with a side of coconut rice and, now that I am on the new elimination diet, it will be the last red meat I have until who-knows-when. And that will be the last time I see my Dad until who-knows-when. Maybe, ultimately, that was the real reason for the tears… Knowing I had to say goodbye in a few short hours.


12 thoughts on “Ups and Downs

  1. Noooooooooo, what a shit time of it you have had the past few weeks. Your doctor sounds like a great resource though and maybe the whole mercury lining up thing has had an effect, who knows? I’ve read about the horrible hormone imbalances/ mood swings ME patients suffer and often wonder if I wasn’t on birth control would I fall victim to them. I feel your anguish re your husband, the impact I have on my husbands life is immense, and then the vicious circle of guilt hits. But I have to step out of that circle and refocus, there is one common goal my husband and I share, as do you and yours, “beating ME”, any day I can smile, or a day I can laugh is a day I have beaten her. And I make sure to do both everyday, no matter how shit it is, even if its forced! She can take my body, but she can’t take me… I learnt a saying years ago and since falling ill its sort of become a mantra.. and so I pass it to you…”we are strong confident women”…Sending you hugs. xx


    • E. Milo says:

      Oh, it has been a rough few months… few years! For us both, I know. The Good Doctor is the only one willing to stick with me and keep trying things, so she is invaluable. Birth control has been a huge factor for me.. I was on the pill continuously for 2 years because I would pass out and go to the ER (A&E, but you know that because you’ve lived in America, too, right?). I finally went off the pill a year after getting sick to see if it was causing my headaches, plus I was paranoid about blood clots, being so sedentary. It was ok until this month ~ pain was bearable, although ME defo got worse during PMS week. The worst, though, was the continuing acne hell that flared up after I stopped the pill. My skin was completely clear for years! Anyway, I don’t want to be back on the pill because of my fears of side effects, but I DO want to be back on it to help skin, mood, bloating, pain etc.

      I love ”we are strong confident women”, but, even more, I love “there is one common goal my husband and I share… beating ME”. That is a very important thing to remember. Thank you!


      • Jeepers, landing in ER, that’s scary (I get you! I worked in Kentucky for a while!!). Maybe this months torture will be a one off and ME and your body will be better behaved next month. At least you have a great doctor to bounce ideas with, such a treasure trove, I love my GP and consultant, both get me and ME… looks like we hit the Jackpot in doctors, who says the lotto is the be all and end all!


      • E. Milo says:

        Weeellll, I’m not so sure my doctor gets M.E. In fact, none of the doctors I’ve seen get it. She’s just trying to treat immune dysfunction and autoimmune conditions. I wish there were an ME expert near me, I’d feel like I had done everything I can, if I could see someone who knows about this disease.


      • Be careful what you wish for!!! When i was first diagnosed it was by a general consultant and I begged him to refer me to a guy who apparently was an expert. My thinking like you, was to be seen by the best, and get the best treatment. It didn’t work. I met him, he didn’t listen to a word I said, talked over me at every opportunity, before meeting him id sent him an email, it was long, but I wanted to be sure we discussed everything before i left the room having waited a moth to see him. He told me he hadn’t had time to read it. Nice man! It was as if he had a printed sheet and was sticking to it, there was no room to put a plan in place for me, it was all generic, and I had to hand him over money for this wasted hour of my life, wasted energy! My current consultant, while no expert in ME is at least empathetic and will listen and i can show her stuff i see online and its all two way communication. I find it funny, in a horrible way, to sit opposite both my gp and consultant and know from there faces they are thinking “o shit, what do i do now”. Sometimes I’ve just got to laugh at it all, its better than a fiction novel at times!


  2. triciaruth says:

    Aah, brain fog. That ‘delightful’ foe. I’ve been in the middle of a sentence and my mind has gone blank many times. Unless people have experienced it it is very hard to describe.

    I wonder how much of your lighter feeling might have come from admitting that you’re having difficulty coping – the mindset of many who develop CFS is that you should be superwoman (or superman) and save the world whilst leaping tall buildings as well as keeping a perfect house, being a super chef and perfect partner/spouse/parent. The worry about what might happen if we admit that we’re not superwoman (people will I longer want to have anything to do with us, the world will end) is a big emotional strain and then you find out, after admitting it, that nothing bad happens except you feel lighter because you’ve released that burden.

    Great news that you’re feeling improved and sorry you’ve had such a tough time. Here’s to continuing improvements!


    • E. Milo says:

      I thought the same thing, Tricia Ruth! Maybe just saying, “I can’t accept this disease, I feel depressed and hopeless” opened up my mind to breathe and find relief. I had said that on my blog and to my therapist, but I don’t think it was the same. You are also dead on about trying to be superwoman. I have been a control freak my whole life. One of these days I’ll write a blog about giving up control. Harder than maybe anything else is letting go of perfectionism and boundless ambition.


  3. Jackie says:

    I loved reading this! It isn’t always good or always bad, and we don’t know why. This post really captured that.

    Here’s some “we can’t eat anything” humor. My sister wants to lose a little weight for her wedding but has a bit of trouble sticking to healthy eating with the temptations around her house. I suggested she develop a food intolerance. 🙂


    • E. Milo says:

      Haha! Lucky for your sister that she has no food intolerances! Do you have other siblings? Are they all healthy? I want to write about that one day ~ the fact that I am the only one in my family with crazy health issues. My parents are almost 70 and they are healthier than I am! Thanks for commenting. 🙂


      • Jackie says:

        My brother is healthy. My sister actually had POTS for a good 10 years, but outgrew it. With her permission, I want to write her story someday because we didn’t know all her symptoms were POTS. We knew POTS but the symptoms were blamed on anxiety/depression. My Dad is really healthy, but I get my autonomic issues from my Mom!


      • E. Milo says:

        I can’t believe your sister had POTS! It does run in families! Very interesting. I would love to read about her story. It’s always blamed on anxiety. Do you read the Potsgrrl blog? There’s an article about her story on Health Rising.


  4. […] the exhausting week that I visited the Good Doctor and had my traumatic trip to the massage, I emailed my family and close friends and said that I […]


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