Milo’s Law: If It Can Go Wrong, It Will Go Wrong.

When I wake up in the morning, I usually spend a while in bed “gathering my strength”. I cuddle with my dogs and check emails on my phone or just lie there, coming into consciousness. It seems to change the way my day unfolds if I take the time to do this. I also try to have a long, slow morning before appointments: have my tea, my supplements, sit in front of my light box, have breakfast, gear up for a shower… This is all to emphasise yesterday’s difficulty of getting up at 8am and leaving the house at 9am to be at an appointment by 9:40am. I am a different person now that I have ME and, just as I couldn’t crash on somebody’s couch overnight or sit in a car for a road trip, I can’t get up and leave the house in an hour without great difficulty. That sort of morning rush takes a giant toll on my body.

But I had to yesterday. I felt okay getting out of bed and taking a shower and then, after being upright for about 20 minutes, I hit a wall. My heart rate was over 115 bpm and wouldn’t calm down. I was shaking so much, I checked my blood sugar to make sure it hadn’t dropped too low. I sat down for a half hour before getting dressed and my whole body sweat the entire time.

We were going to stop and get my prescriptions on the way to my appointment with my GP since we had left 40 minutes for a 20 minute drive, but we heard on the radio that there had been an accident on the highway and it was wreaking havoc, so we decided to head straight for the clinic. We took the back roads ~ avoided the highway ~ and apparently the rest of the city did, too. Nothing was moving. I called the clinic at 9:30am and told them I might be a little late. I called again at 9:50am and told them we were still sitting in the same spot on the road and now I was already 10 minutes late. They told me to come in anyway ~ everyone was running behind because of the traffic. I called my physical therapist, with whom I had an appointment after my GP at 11am, and asked him if he happened to have any open slots later in the day. He made some phone calls, then called me back and said his 1pm patient will swap with me. Wow, who goes to that sort of trouble? Brilliant.

We got to the clinic finally at 10:10am ~ the 20 minute drive took an hour and 10 minutes ~ and my doctor wouldn’t see me. I was too late. I said, “I can stay here and wait until noon if there is a chance she can fit me in… Isn’t everyone else late, too? … My husband took the day off work… it’s really difficult for me to get here…” I wanted to have a meltdown, but I was too tired. The answer was no; I’d have to reschedule. I even asked, “Does she know it’s me?” as if I’m some spoiled rock star (“Do you know who I AM??”), but I thought she would understand what is involved to get me here and find a way to make it happen. But maybe she doesn’t know how difficult getting to the appointment is… Like I said, I haven’t seen her in 6.5 months and I’ve changed.

It was never clearer just how much I’ve changed than when I was walking back to the car in the disabled lot (ie: not far). The parking lot is on an incline. I’ve been going to this clinic for years and I could have NEVER told you this lot was not flat as a pancake because it never registered before. Because it never needed to. Yesterday, the tarmac reared up in front of me like some CGI ground wave in a movie about an earthquake. My vision tunneled ~ honestly, it was like a Hitchcock camera trick ~ all I saw was black parking lot climbing straight upwards in front of me. I had to stop constantly as I walked to the car. It blew me away. I never could have told you there was any slope there. My muscles, my heart, my lungs… they simply don’t work anymore.

To complicate things further, I called my PT back and said, “Actually, I canmake my 11am appointment now, but your other patient is probably already on his way, but if it’s any hardship at all for him, I can swap back, but no need to call me back, I’ll just come at 1pm…” Mutter mutter… Bashful, embarrassed, crawl-into-a-hole voice…

So my husband and I went home again and I lay perfectly still with my eyes closed, deep breathing my frustration away until 12:40pm when it was time to leave again. I rescheduled the appointment for tomorrow week (for all my American readers, that means a week from tomorrow. I really miss being able to use that shorthand (shortspeak?): “Friday week” is so much less cumbersome than “a week from Friday”).

I also spent another two hours on the phone with my insurance company. Being ill is a full-time job.

Gratitude for the day: Thank you to the FIVE people who texted and messaged to wish me luck at the appointment-that-never-happened. You write a post about an upcoming follow up with your GP, not knowing who will read it, and then, suddenly, a friend that you haven’t seen in a year and a friend in a different country and a parent and a sibling and an online CFS blog buddy all send you notes to say good luck and/or how’d it go? You know who you are: THANK YOU. Every day, every time, it helps.

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11 thoughts on “Milo’s Law: If It Can Go Wrong, It Will Go Wrong.

  1. Jackie says:

    What a frustrating day! I hate when I use all my spoons on stuff like doctors.

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    • E. Milo says:

      Thanks for the empathy, Jackie! I keep meaning to go to your blog and leave a message about how GRATEFUL I am for your thorough detailing of your Mayo experience. My father has wanted me to consider going there for a while and I am so disenchanted with doctors that I can’t imagine traveling anywhere except to see an ME/CFS expert. Anyway, your blog really helped me understand what I would go through and I appreciate the time it took to write that all up/take photos etc.

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  2. triciaruth says:

    Inclines are a nightmare for me too. After being on holiday, I realised I hadn’t ‘done’ stairs all week when the first few times I did them back home was torture, sweating, breathless and heart racing.
    Good luck with your next appointment.

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    • E. Milo says:

      Tricia Ruth, this might come out wrong, but, as much as I HATE the difficulty you had with stairs, it gives me a teeny bit of peace because I think of you as energetically and easily riding horses and it seems like such a long-away goal for me… Somehow, it is helpful to know that, even though I might be fighting this forever and repeatedly have to deal with deconditioning, I might ALSO be managing to ride horses or do pilates…. You are inspirational and those little pieces of information help me to see where I might be able to get to in the future. 🙂

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      • triciaruth says:

        You will be!
        I’m going to do some blogging specifically on graded exercise therapy which got me where I am, because, although the end goal is to do more, SUCCESSFUL G.E.T. is about doing less but sustaining it. My recent holiday has highlighted a few points that have really pulled that into sharp focus.

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  3. I am EXACTLY the same in the mornings and same problems with morning doctor appointments, same problem with getting up and showering andheart rate going high to the 100s-130s, and the sweating, and pure exhaustion. One thing that has helped is a chair for the shower, like old people use. I just got it and have used it for a couple weeks.and yes, I need a break mid-shower to sit down.. Baths are hard because it takes too much energy to stand up all the way from sitting at the bottom of the tub.. so I now shower sitting down on the stool. I felt the need for one but felt too young to have one, felt like caving in for something I shouldn’t need at my age… and my next thing I think I need to invest in is a cane. I don’t WANT to need it, but I need it, or a walker or something..well, I actually really need a wheel chair for some days. Some days are just that bad. but the shower is everyday so I did it, I got it, and I don’t regret it one bit. Just wanted you to know your not alone in your morning routine and morning problems. (((HUGS)))

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  4. If at all possible, avoid all morning appointments. it will help. I have done all the…”I have to…I can make myself… it’s just one time..” NO.. the morning ones NEVER work out, avoid them completely. The frustration that happens from not being able to get to it, and the guilt is unnecessary. I got tired of being so hard on myself for trying and failing. But, I did have no choice recenlty and had to go to an 8am appoinment that was an hour drive away without traffic, but it was 8am so it was an hour and a half with the trafffic. The only reason I een made it was because I had to stay up all night to avoid the morning routine… I had to take a shower at night and lay in bed and just BE awake so I could make it..and I did, and the rest of the day was awful and it has taken me 2 weeks to “recover”. NOT WORTH IT! and I think to myself.. why did I do this? I know I can’t do this anymore. I took the 8am appointment because something was wrong and that was the only time they could see me the next day ..without having to wait all weekend and deal with my problem possibly getting worse or ending up in the ER with a HUGE debt. I’m sorry you called and let them know you were running late and they said come anyway and then you get there and they said no. I understand the feeling the meltdown, feeling the..what did I go through all this morning torture for to be turned down? How can i muster the energy to do this all over again on a different day? It will take all week til that next appointment to recover. The other letdown will be when you see your doctor and even though it has been a long period of time since you saw her and YOU feel like you have SO much to tell her.. it will probably be a 5 minute visit, she’ll write a few notes and walk out the door.. a nurse will give you a prescription paper and orders for bloodwork and you will feel like “what did I come here for?” But you do need to go, and even though the time is short, the bloodwork is important. SUGGESTION if you haven’t done this already: Before you go to her make a list of things to tell her and bring copies of any tests you had done anywhere else. or actually, fax those copies to her BEFORE your appointment and write a cover note that says please reivew before my upcoming appointment on this date. This will help prepare her for you to see her…rather than bombard her with allt his news as she walks in the door after not seeing you. I’ve been through this for 7 years, and this makes the short time you actually get to see the doctor, more productive. …It is something I wish I had known early on. Medical system is horrible, things take too much time, seems like doctors don’t really listen or take time or care. BUT the GOOD doctors are looking at your file after hours and on weekends and thinking about you.. there ARE doctors like that around, but SO rare to find. I have 2 and I’m very very lucky, they are the ones who keep me from not giving up.

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  5. I’m just like you and have to have a
    very slow morning so I totally sympathize with how hard your doctors visit day was. I hope the next doctors visit day goes a bit more smoothly for you.

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  6. Stina says:

    All I have to say is that doctor visit days are the pits and yours must have been so very frustrating! Ugh! Sorry to hear that, hope next time is better, well as much so as a doctor visit day can be anyway. 😉

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  7. Kathleen Pritchett says:

    Hello: You have a very informative & interesting blog. I came upon your site because of a dream I had last night. In the dream, an actor from a television series handed me a piece of paper which read: Milo’s Law. It was suppose to be some form of encouragement and/or religious inspiration. In reality, I have never heard of the phrase Milo’s Law – so thanks to Internet I found your site. Perhaps, this is some sort of ‘warning’. I have many of the symptoms you have described. I hope that one day, you will be ‘cured’ of this mysterious disease.
    Thank you.
    Kathleen Pritchett
    O’fallon, Illinois
    USA
    (6/30/2013)

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  8. […] for another fitting, which ended in a decision to send the appliance back to the lab for tweaking. Milo’s Law: if it can go wrong, it will go wrong for me. It’ll be another 3 weeks before it comes back […]

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