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Allergies and all.

I wonder how much of how crappy I feel is from allergies. I wonder this all the time because I have never been able to accurately pinpoint my allergy “symptoms”. I don’t think I have any, but doctors continue to insist that I do. When I was a toddler, doctors did a whole slew of skin-prick tests and told my mother I was allergic to half the things on earth. I’ve seen the list: dogs, dust, insects, newspaper, hog hair (?!)… it goes on and on. Of course we ignored it and I don’t remember being plagued  by any allergy symptoms throughout my life (or maybe I was and it was “normal” to me, who knows?). Then, during a check-up about 5 years ago, a doctor told me I was “boggy” in my nasal cavities and said I should use Flonase to help with the symptoms, but I didn’t know anything different, so I never thought I had symptoms, so I never used the Flonase.

Then, after I fell ill with ME, I had some skin prick tests done again (searching, like so many of us do, for any answer to my problems). I was told I was allergic to dogs, cats, and dust mites. This time I took it marginally seriously and began the endless quest to kill dust mites (mattress, duvet and pillow covers, new allergy comforter, new latex pillow, wash bedding weekly in dust mite-killing detergent, HEPA air filter, UV and bright light, wet dust etc.) and started the lonely nights in bed without my pups to cuddle. Nothing about my symptoms changed. My ME/CFS symptoms, that is. Like I said, who even knows if I actually have symptoms to these supposed allergies at all? I don’t sneeze, I don’t itch ~ could my allergy symptoms simply be tiredness and a “bogginess” I never knew existed? “Yes,” the allergist said. “You will be able to breathe better and have so much more energy to play with your dogs, that you won’t mind not having them on the bed.” Never happened. Then I was tested for allergic reactions to trees, weeds, grasses, and molds.  I was allergic to all of it, especially alders and birch trees (see photos below).

birch tree reaction

birch tree reaction

alder tree reaction

alder tree reaction

Uh oh. There are birches all over our neighbourhood ~ we have one in our garden. There is an alder tree next door, looking over our yard. I looked up the current pollen count for our area: HIGH for trees, especially birch, alder and juniper.

Screenshot_2013-04-13-12-26-25What do I do with this information? I took a child dose of Zyrtec because I thought I should do something, but, as usual, I can’t really pinpoint symptoms. Yeah, my nose runs and my eyes feel … annoying… But, they don’t itch and I’m not sneezing and spluttering like those poor souls in the ads on tv. Should I be taking more antihistamines more often? Could it eventually help some of these allergic reactions I don’t even know I’m having? The doctor last year gave me Nasonex and oral steroids. They went in the drawer, unopened, of course. Maybe my allergic reaction would be more obvious if I went outside and rubbed my back up and down our birch, Baloo-style.

baloo - Edited

bare necessities

And I haven’t even started into the yes-you-have-food-allergies/no-don’t-trust-the-results arguments the doctors have when it comes to my positive blood antibody tests to tomatoes, cod and egg. I’ve always thought, if it’s not anaphylaxis, who cares? Unfortunately, with ME/CFS, it seems I HAVE TO care because reducing my body’s inflammation and stress hormones and toxins and oxidative stress and everything else that life throws at us is the only sure-fire way to feel better. Maybe Dr. Cheney was right when he joked that he’d like to be able to put patients in a coma to facilitate recovery ~ and, while he’s at it, how about we lie in a sterile bubble in a hermetically sealed room with no visitors, happy images fed into our subconscious, and nothing but anti-inflammatory glop in the feeding tube?

I’d rather curl up with my dogs (and the hogs) in the dirt and grass of the garden, under the shade of the alder, with a cold Mac & Jacks, and eat an omelet with some pico de gallo … and a cod and chips… with mayo and ketchup… fried in something other than coconut or olive oil… and live life. Allergies and all.

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all the logic and language and loss

I was hoping to start feeling better again before I wrote anything, but this downturn is lasting longer than I thought it would. It’s not horrific. I’m not confined to the bed or couch, but, I’m not walking in the garden or doing my stretches ~ my two forms of activity. I’m basically just shuffling around the house, very Tin Man. Easter was the beginning of the slump, with symptoms aggravated by a teeth cleaning last week. I had been putting it off for a few months, thinking it was not a smart expenditure of energy, but, when I was having my good week, I made an appointment.

I looked online beforehand, but I couldn’t find any firsthand accounts of the ramifications of teeth cleanings on people with ME. Unfortunately, I can’t really give an accurate account because I compounded the effects by ~ I know, I’m an idiot ~ driving myself downtown to the appointment and chatting way too much to the hygienist because I wanted to fill her in on my situation (I’ve been going to the same dental clinic for over a decade).

I thought the drive would be straightforward and I didn’t want to ask my husband to take the day off work. Big mistake. Again. The problems started while I was walking from the elevators to the dental office. My heart rate was over 120 bpm and I had to stop walking repeatedly. This was a short hallway and I felt ridiculous stopping every two steps to wait for my heart to calm down. I wasn’t nervous about the appointment, so I think it was because I was carrying my purse… That’s my theory. The cleaning itself was fine. I asked her to be very gentle and skip the floss. The worst part was coming back upright after being tipped fully head-down in the chair for so long. But I recovered quickly from the momentary vertigo and went home.

That night I was curled in a ball on the kitchen floor, crying, feeling like I was dying, dogs swarming around me, wondering what was wrong. I told my husband, “Never let me drive downtown again, no matter how strong I say I’m feeling.” I tried to figure out the reason: Was it because I drove too far again? Or because my heart was running full steam? Or because I talked too much? Or the after-effects of the position I was in ~ akin to a tilt-table test? Or the actual cleaning ~ the release of bacteria, the micro-abrasions? I’m always trying to tease apart cause and effect, but there are too many confounding variables and logic doesn’t lend itself to this disease. Logically, with more rest and more sleep, with a better diet and fewer toxins, with less stress and more mindful awareness, I should be feeling better than I ever have. But my temperance is obviously outweighed by the marauding lifestyle of my viral invaders and the intemperate rage of my immune system.

Happily, my hygienist said she thought it would be fine to push my next cleaning out a year since I am taking such good care of my teeth. There is nothing like a chronic illness to get you to floss every day and never go without your mouth guard ~ I don’t want any preventable problems complicating my current situation.

I didn’t feel as bad the next day, but then my period came. This is now my fourth almost-painless period since coming off the pill in December and, believe you me, I am rejoicing every minute of fearless, crampless menstruation. I spent SO many years dreading the monthly… planning my life around it… so, this positive change in my body does not go unnoticed. However, the ME/CFS symptoms definitely flare up each month ~ the usual uterine pain has just walked around to my lower back. And my coccyx: the absolute southern-most point of my spine is killing me. That baffles me.

Since getting my period, I have had a headache. I haven’t had a headache in so long ~ especially one that goes to sleep with me and is still there when I wake. I’m not happy with this bedfellow ~ I was hoping, since the husband and dogs have been relegated to different beds, I would only be sleeping with the dust mites that could survive my weekly washing ~ so, again, I’m trying to analyse the cause: Is the headache from my period? The new Seriphos supplement? The new licorice tea? Pollen allergies? Neck tension? Bad sleep? But, all other symptoms have increased, too: I’ve had more of the usual inflamed, painful, stiff muscles. The hot/cold issues. Feeling like I’m coming down with something… sore throat … you all know the deal. And I had two nights of slight night sweats. This struck the fear of god into me. Besides the muscle issues and heavy dragging exhaustion, these are symptoms that had left me. Yesterday, I started begging aloud: Please don’t let it come back, PLEASEPLEASEPLEASE...

For a few months I have been watching the texture of my skin change. It’s bumpy ~ different than anything I’ve experienced in 40 years. I was convinced it was my extremely high-fat diet, so I ignored it. Who cares? I have bigger fish to fry. But it’s getting steadily more alarming and during these last few weeks of hormonal fluctuations, it has bloomed into an acne-braille mash-up that, when coupled with the lack of muscle tone, weight gain, sleep-deprived eyes, thin hair showing a year’s worth of grown out roots (with so much grey!), has me recoiling from mirrors. I told my doctor that I felt like that scene in The Exorcist where the skin on the girl’s stomach spells out “help me“. It was like the needle slid across the record… The Good Doctor and her trainee internist looked at me with heads cocked and eyebrows furrowed and I could hear the clock’s second hand ticking around… “Oh, nevermind,” I said. “I just mean my body is trying to tell me something.” My point was, there has to be a logical explanation. My body is pushing  from the inside out into every pore and I should be able to read its message. I should, after all these years, know its language.

So creepy... So sorry.

So creepy… So sorry.

A few happy notes to help get that image out of your head: our Cherry Blossom tree is in full bloom, raining salubrious pink petals all over the garden. My sleep is ever so slightly better. I’m starting Chinese herbs next week and will probably add back legumes to my diet after that. I managed to organise all of our finances for tax time. My husband’s sleep apnea is nothing to worry about. A bird just hopped by my window with a tuft of what was obviously my dog’s golden hair held in its beak and I’m thrilled to think, after how much he has terrorised them, that his fur will do a little community service in a nest somewhere. My friend Z. and her beautiful baby girl came to visit yesterday. My family is healthy. And Game of Thrones has started.

Title Credit

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You can help with info for upcoming FDA Workshop on drug development for ME/CFS

I’m having a pretty rough week, so I’ll keep you all informed by copying and pasting this post from Sue over at Learning to Live with CFS about the ways in which people with ME/CFS can contribute to the knowledge base being collected in preparation for the upcoming FDA Workshop on drug development. I’m going to try to get the energy up to fill out the surveys even though I’ll probably never take the drugs they (might) develop.  Haha.

Two Ways to Help ME/CFS Treatment Move Forward

On April 25-26, the U.S. Food & Drug Administration (FDA) will be holding its first-ever FDA Workshop on Drug Development for Chronic Fatigue Syndrome (CFS) and Myalgic Encephalomyelitis (ME) in Bethesda, Maryland. This is our big opportunity to teach the FDA all about the severity and effects of ME/CFS and our urgent need for effective treatments.The meeting is open to the public, though of course, many ME/CFS patients are too sick to attend. However, even if you are bedridden, there are two ways that you can help in this momentous event. Two different surveys have been launched to collect patient data, and the more patients that respond, the more impact we can have in convincing the FDA that there is an urgent need for medications designed specifically to target the unique complexities of ME/CFS.

The CFIDS Association is conducting a survey based on the questions FDA posed in the Federal Register notice for the Workshop. Responses to the survey will be collated and presented at the workshop. It consists of open-ended questions (full sentences not required – brief responses or bullet points are fine) and will take between 30-60 minutes to complete. Follow this link to begin the CFIDS Association survey.

The second survey has been designed by Dr. Lily Chu and Dr. Leonard Jason, who will be participating in the FDA workshop. Dr. Chu will present the results of this survey to help teach the FDA about ME/CFS from the patients’ point of view. This survey is multiple choice with some room for additional comments and should take about 30-40 minutes to complete (mine only took 25 minutes to complete). Responses are needed by April 17 to be included in the FDA meeting, but the survey will remain open until May 10, and all responses included in a report. Follow this link to begin the Chu/Jason survey. 

If you can manage both surveys, great – they are different surveys and they can use all the patient input they can get and the more responses they get, the more meaningful the data will be. If you can only manage one, just choose one  – your participation will be helpful either way.

You can also participate directly in the meeting in person or by giving public comment. This blog post from Occupy CFS provides details and links (I also borrowed heavily from another Occupy CFS post for the survey information above since I haven’t been feeling well lately – thanks, Jennie!)

This FDA workshop is a big deal, so help out however you can!

P.S. I believe the CFIDS Association survey is open to patients all over the world, not just in the US. Questions on the survey will ask where you’re from so that US data can be pulled out, but the more responses, the better! If the FDA gets on board with focusing on ME/CFS, it will help make treatments more available all over the world.

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You Make My Heartbeat Mo Mo More…

I’m a few years behind the times here, but I finally bought a heart rate monitor. I actually ordered one from Amazon ages ago when I was looking for a pedometer, but wound up returning it because I didn’t want to deal with the chest strap and bulky watch. Little did I know that it could be a very useful tool in managing ME. So, after watching this video made by Dr. Nancy Klimas, director of the CFS Clinic in Miami, I decided to buy another one with the goal of increasing my fitness level and muscle tone ~ carefully, over a long period of time. Apparently I still wasn’t convinced it was going to be a good investment because I went for the cheapest option with decent reviews and got this monitor made by Pyle. I don’t want to go to the trouble of returning it again, but, be warned: it is huge. It’s working and I’m managing to use it with consistent results, but the chest strap – as tight as you can make it – slips down a lot and I know there are straps and watches made for women out there. I wish I’d researched a bit more.

IMG_20130403_101730_733

You can see all three of Dr. Klimas’s videos and get more info at the Exercise Group page created by Dan Moricoli of the ME-CFS Community website (you might have to create a username and password to access it). If you are interested in more details, I recommend you read this article by Bruce Campbell and this post by Sue over at Learning to Live with CFS.

The upshot is, people with ME/CFS should stay in aerobic “exercise” because, once your body goes over the anaerobic threshold, it is using energy pulled from the muscles and this can cause post-exertional malaise. If you can’t afford to fly to Florida and get all the fancy testing, you can roughly calculate your anaerobic threshold as 60% of your maximum heart rate with the following formula: (220 – 50) x .6 For me, that is 108 bpm.

What I have learned in the last week of wearing the heart rate monitor is amazing. I set the alarm on the monitor to go off when I hit 105 bpm, which, it turns out, is a lot. Lying down, my heart rate is in the 60s. Sitting up, it is in the 70s. Doing any movement puts it in the 80s and 90s. The over-105 alarm goes off every time I stand up. It doesn’t stay up if I continue standing, but it takes a few minutes to come down. The alarm goes off when I do anything to do with laundry ~ the motion of reaching down, pulling sheets out of a washer or dryer jacks my pulse up and keeps it up. I’ve started to do laundry sitting on the ground, moving my arms carefully (luckily, we got front-loaders last year). The alarm goes off every time I climb the few stairs to the bathroom and, surprisingly, EVERY time I pour a glass of water and drink it. I don’t know if it is the action of pouring from the filter jug or lifting the glass to my mouth or swallowing or all of it. That’s some serious exercise! Whenever I take a bath, my heart rate stays high for a very long time afterwards. I drink a lot of water in case it is caused by low blood volume, but it doesn’t seem to help. The flip-side is, I can walk my laps around the garden without going over 100 bpms ~ as long as I don’t move too quickly and take little breaks. I’m still only doing 3 or 4 laps a few times each week. I CANNOT WAIT until I am able to take a proper walk. I just want to be able to walk for half an hour straight. In the dog park. It would be glorious.

If anyone has any experience with using the heart rate monitor program for ME and can give me advice, I would love it. I’m trying to figure out where the parameters are… I guess I just have to figure it out the old fashioned way: if I crash after activity, I did too much. My “better” days ended on Easter. I’m not feeling terrible, but I’m not feeling good. If those days of slightly-more-strength came back and stayed back, I could see myself working again. Maybe even thinking about life every day and not the incessant head-to-toe analysis of what my body is doing.

Note to E. and my brother T.: name that tune before you look: Title Credit.

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I’m A Lucky, Lucky Lady

Last week my friend Z. came by my house with her baby girl and we just visited like (almost) normal people and watched the little munchkin play with toys and pat the dogs. I also got a package from my friend E. in the mail with all sorts of fun things to read and loads of the Extra Strength Menthol Halls lozenges I like. I also got a postcard and what looks like a year’s supply of energy supplements from my friend C. I also got a box full of organic produce from friends of ours who live nearby, two letters from my Father, an Easter care package from my Mother, a phone call from an old friend, emails from my nieces and the list goes on and on.

I was throwing myself a bit of a whaaa-I-have-no-friends pity party a few weeks ago, so it is really good to have my nose rubbed in the fact that my life is bursting at the seams with so many caring, thoughtful people that haven’t forgotten me even though I went into hiding, while this illness become my prime focus. Recently, I’ve been trying to reach out and take some chances. I’ve gotten in touch with a few people I neglected and have entertained the notion of getting a haircut or having a lunch date. I may not have the energy most days to keep up my end of the bargain when it comes to maintaining communication, but at least I know, if I can put myself out there once in a while, there will be friends and family waiting to meet me right where I am.