I'm Shrinking

Well, the gut infection is pretty much over. It lasted 7 or 8 days.

However, it's been two weeks now and I'm still having trouble eating solids due to pain (which is much improved but still there) and major grumbling and rumbling every time I eat. But I am eating. Smoothies and some blended soups. I just tried a yogurt smoothie Popsicle (with probiotics added) - WOW!! that was good. I highly recommend them to anyone who's having major gut issues.

Last Tues. I had my tele health appointment with my specialist finally after 6 mo waiting. I was determined not to talk about my recent gut issues because I didn't want my M.E. agenda usurped. Unfortunately my gut issues got dragged in and ended up taking up more than half the appointment.

She asked my NP to do a bunch more blood work to send along to my appointment with the Gastroenterologist in a week and a half. She's on a kick that it might be Giardia related due to my years in the woods and the recent research out of Norway showing Giardia outbreaks as a precursor to M.E.

I tried to remind her that I started with a severe Mono infection, but I guess it doesn't hurt to investigate.

I also got a lecture on pacing and resting. The last thing I need is to feel like my ill health is my fault, like I somehow brought this terrible year on myself. I do nothing with my life but rest it seems. If rest was a cure, it would have worked by now. (That being said, I can occasionally overdo it on my good days).

She was going to look into some Florinef for me to perhaps help with my terrible POTS/OI symptoms. I figure my quality of life would improve drastically if I could sit up in the mornings. Mornings are my least sick time of day M.E.-wise but my worst POTS wise. I would love to be able to take those hours back somehow.

I've now lost 10 lbs in two weeks. I'm shrinking. While my gut is much improved, I've developed a bit of fear around eating due to the amount of pain I was in for 10 days. I'm trying to remind myself to try, but last night I ate a little corn pasta and had 2 hours of minor pain, but enough to keep me from falling asleep and retreat to the liquid diet for a bit longer.

Both the emergency room Doc. and my specialist said if I'm keeping lots of fluids down and the output isn't drastic, it's OK for the time being.

I see the Gastro in just over a week and my specialist again in two weeks (she wanted to hear the follow up from the Gastro and check in on me).

I still haven't heard what the tests at the hospital showed, but my NP promised that if there was anything she would call.

My "gut" (haha) tells me that it was just the stomach virus going around that set off a flare of inflammation of some kind (colitis?). My immune system just doesn't seem to be able to manage these stomach viruses. I had the same problem (although less severe) when I got stomach flu at the end of December.

My Record is Broken - Emergency Room Visit

So I ended up at emergency at the hospital yesterday. While I have been to a hospital for tests before, it is the first time I've been to an emergency room since grade 6 at the age of 12 when I broke my arm.

The vertigo/dizziness I went to the walk-in for last week turned into a nasty stomach bug of some kind.

After 7 days of not being able to eat and enduring fairly severe abdominal pain, nausea, as well as diarrhoea (sorry for the graphicness), I decided to go back to a walk-in. After waiting a long time at the walk-in, the Dr. saw me for under a minute before he told me he really couldn't do anything for me and that I should go to emergency for some tests and IV fluids which would "perk me right up".

At emergency I had to wait maybe 15min for the triage nurse (more sitting up) so I guess my heart rate was quite elevated (due to the POTS I think). After less than 10 more minutes I was called in, given a bed in a curtained off area to boot despite the fact that the hallway was packed full of people in beds. (The nurse told me later that the private area was due to my past history of c. difficile infection which they don't like in hospitals).

I was given an IV - the Dr. thought I was quite dehydrated and was worried about my heart rate - and they ran some blood tests (all normal). The Dr. concluded that it is probably a whopper of a virus. He sent me home with a bunch of kits to check for various infections (including c. difficile). I should know within the next couple days.

My gut is still in rough shape today, but I feel as if the infection is easing up a bit (hopefully).

Despite my phobia of both medical professionals and hospitals, I had an really good experience. The nurse was very nice as was the Dr.

I avoided sharing my diagnosis of M.E. - I didn't have the energy to risk the the skeptisicm if by chance the Dr. or nurses were not 'believers'. I also figured it wouldn't help them figure out the gut problems anyway.

Still, I felt so weird saying "no" when they asked about other medical conditions. I did share that I had OI partly hoping it would allow me to lay down as I'd been sitting way too long.

I'm hoping they find that this is a treatable infection so I can get something to help me kick it.

The Dr. said I could go another week without eating if I thought I was keeping down some fluids. If I had worsening pain or spiked a fever that I should come back. If I'm still not eating in a week, I might also need to return.

Quite a day. I'm not super crashed from it yet, but still, I don't plan on doing much this weekend. I've only been out of the house three times in the last two weeks and two of those were for medical reasons. Crossing my figures I recover soon.

Hypochondriac

If it's not one thing lately, it's another. From the outside, I must sound like a complete hypochondriac.

I've been pretty badly crashed again this whole week so I have all my typical flu-like M.E. symptoms (sore throat, painful lymphs, breathing ache, severe fatigue, weakness, tremors).

I'm also dealing with bouts of dizziness that aren't OI. It's a balance thing. I went to a talk on Friday at the U (against my better judgement because the M.E.'s been so bad) and the whole first hour couldn't focus because I felt off kilter (balance) and as if I was looking through a haze. I've also been feeling as if my brain is swollen (not painful, just pressure).

I finally went to a walk-in clinic Saturday and was diagnosed with vertigo. Evidently, to have vertigo, you don't need things around to seem like they're constantly spinning. It can come in bouts like I've been experiencing, and express itself as feeling off-balance. According the the Dr., the minor ear pain I've had the last five days is due to my eustachian tubes being inflamed, (swollen) but not infected. He also saw that the pressure in my ears wasn't equalizing.

He said bouts of vertigo typically last 10 days to 2 weeks. I've had this type of dizziness many times since M.E. (2 or 3 times a year). I've tried to get it treated only twice. I have a prescription for Serc, however, he said gravol is almost as effective.

I'm also dealing with another bout of stomach upset. I seem to get this every couple months. It sometimes goes on for weeks (or more) at a time (occasionally vomiting, usually diarrhoea). I've been on a waiting list to see a gastro for over a year. I'm not too hopeful they'll find anything, but if I'm lucky, perhaps. On the positive side, the chronic intestinal issues make it so I don't gain too much weight laying around all day. I have a spell of serious stomach/intestinal stuff, loose a bunch of weight and by the time I'm feeling better and gain it back I have another round. (How is that for glass half-full? Not the preferred method of weight loss, but).

So I'm feeling as if it's not one thing it's another. Isn't the M.E. bad enough without constantly being hit with all this other stuff?

I finally have an appointment scheduled to talk with my specialist. It's through tele health (like video conferencing) so we'll see how it goes. Top of my list is OI. I managed to partially faint in the kitchen Thurs. night but luckily didn't injure myself.

The view from where I lay.....

This is pretty much what I see while I lay here. In some ways it's what keeps me going. My little friend "Weagers" is a fairly needy dog which suits me just fine. She lays beside me much of the day and I lay here petting her while I surf online, rest, or read.

I've been doing better since Dec. overall, however, I still have some pretty terribly ill days. Yesterday was one of those terrible days. I made it through, that's about all I can say. I actually fell apart at the end of the day and had a good cry. It was all just a little too much.

All day I lay in bed feeling just awfully ill...like the worst day of a cold X three or perhaps like poison was pulsing through my every cell. It was all the mental and emotional energy I had just to bear with it. I knew that if I made it through until 6 or 7pm that it would ease up a bit, and it did.

The day before I'd had an average day but needed an outing. So we went for a little stroll down by the (frozen) water. I knew when I went out that it might not be wise, but mentally I needed the fresh air. And I paid, boy did I pay.

Despite being so ill, I also had to endure being told that "I look great" (extremely validating when I'm feeling so sick I just want to die) and to "cheer up" by two different individuals. Seriously!%$#! Oh well, I guess you can never make anyone understand this stupid illness if they don't want to and I'm not going to waste my energy trying. (A point made by one of the speakers you can listen to from the link I posted in my previous blog post...it was a good talk that had some useful tips on coping).

Talks you may enjoy.

Here are some videos posted on the website for the National M.E./FM Action Network in Canada.

http://www.mefmaction.com/index.php?option=com_seyret&Itemid=211&task=videodirectlink&id=115

They are from the IACFS conference that took place in Ottawa, Canada in 2011.

I had fun watching the one with Dr. Bested (my specialist) who talks about pacing, and even sings a song at the end (sound recording is terrible so hard to get through). But it made me smile.

I always love watching Nancy Klimas, she is always so upbeat and positive and even if I'm feeling jaded and cynical about having M.E. and the plight of sufferers, and the abominable funds allotted for research, I feel uplifted and hopeful when I watch her talk about the research.

The great thing about these talks is they are short (20min) so you can watch them here and there. I was especially impressed by Staci Stevens who talks about the physiology of exercise and activity intolerance in M.E.

In fact, it made me feel pretty badly about my tendency to overdo so much when she puts it in the terms she does - a broken system, an inability metabolically and aerobically to create energy. I wish some of this knowledge and research trickled down to the hands of physicians so we weren't told to "exercise". And in Stevens' talk she outlines some ideas for building strength and endurance and she obviously understands the disease and lack of functional capacity.

I also picked up some useful coping tidbits from Fred Friedberg, I wish I could have him for a phychologist.

Final decision: It's a virus.

It's so funny how similar M.E. is to a viral infection....it really makes me think. Either M.E. is an infection, or else something very closely related (at least in my case).

My roommate came down with a nasty cold last week and stayed as far away from me as is possible in this house (partly because my labs recently showed a mildly low WBC).

So all this week I've been a little more achey than usual, with a l.g. fever, and pretty bad chest ache - all symptoms I get with M.E. It seems like every hour I changed my mind "It's just M.E., no, it's the cold, no, it's just M.E.". Yesterday I went to bed deciding that it was "just M.E." due to the fact that I have not had any congestion....only to wake up with a productive cough.

Turns out I have a cold virus. It seems to have seated itself in my chest from the get go which is unusual for me. Well, it makes me think that M.E. for this individual must be VERY VERY closely related to a virus.

Another interesting find that I've been pondering this week.

When I get low grade fevers (probably 5-10 days a month) they tend to peak in the afternoon and go away in the evening. I was considering how strange this is so I googled it and guess what? It's typical of a mononucleosis infection.

While there is still debate whether or not Epstein Barr virus (the virus that often causes mono) can be chronic or not, it was the infection that triggered my M.E. My specialist thinks that I often have what she calls a "reactivated infection" and I think, despite the contradictory science, that I'm in agreement.

I haven't felt inspired to blog here, partly because my life is pretty dull at present. I lay in bed, play computer games, read, watch TV, rest....not much to write about. Hope all who read this are relatively well.