M.E. and Depression

When I first heard about M.E., long before I had it, I was told "it's kind of like depression".  At the time, a good friend of mine had had a bad relapse of M.E.  Since I had only known her during remission, I didn't really know what M.E. was, so when asking a mutual friend what exactly she was going through, his response had been to compare it to depression.

Now clinical depression is nothing to scoff at.  It's a terrible illness as well.  It is also an illness with biologic abnormalities and not in any way the "fault" of the sufferer.  I have an immediate family member who has struggled with serious depression, so I understand how disabling an illness it can be.  But when I was told that M.E. was "like depression" it didn't quite correlate with this person I knew.  I had never known her to show any signs or features of depression that I had experienced with my family member.

I remember talking to her during her relapse (she had had to drop out of graduate studies and move home with her parents) and her trying to describe the M.E. to me.  She didn't necessarily sound terribly depressed.  Her M.E. was dominated by the cognitive dysfunction with the fatigue a lesser (but still disabling) factor.  She had gotten sick as a teen after contracting chicken pox (post viral M.E.).  She recovered, only to relapse again about five years later.  (Today she considers herself recovered, is married and works full time, although she still struggles with minor symptoms).

The year I got M.E. after a bad bout of Mono, I reconnected with her and the first thing I said was "I'm so so so sorry".  "I had no idea what you were going through all those years back, I had no idea you were so very sick, I wish I'd been a better friend".

Why am I writing about this?  Well, someone with M.E. who I know through one degree of separation took his own life this week.  It has had me thinking about the role depression can play in M.E.  Obviously, to take your own life, there has to be some level of hopelessness or depression, even if it's a temporary state.

Personally, I don't believe the two illnesses are the same or even close relatives (and most the research would corroborate this). However, CFS or M.E., because it does not have a diagnostic test probably contains a certain amount of heterogeneity within the group diagnosed.  Perhaps some people with M.E. have clinical depression instead, or there is no reason why one couldn't have both. But mostly, I think that because on the whole M.E. is a severe and disabling illness, people get depressed.

I was thinking about depression in relation to myself and asking myself that "could I, or would I ever kill myself?" question.  I doubt I'm alone.  I think most people with moderate or severe M.E. would at least have days where they feel unable to take it any more.  And how many steps are there between the terrible daily grind of sickness with seemingly no end in sight, and taking one's own life?  I don't know.

Of course add on top of the suffering the fact that compared to most illnesses, there is virtually no research being conducted, that most Drs. throw their hands up at the suffering asking if they've tried "exercise" and "counselling', along with the social stigma the person with M.E. usually has to face.

So while I believe M.E is a neuro-immune illness of some sort, perhaps with an infectious factor, I also think that if you're sick long enough, facing depression at some point is almost inevitable.  Wouldn't anyone who was sick at the level of influenza everyday enough to loose their hobbies, jobs, maybe homes, friends/social life and sometimes even partners all while dealing with lack of medical or societal support?

While I've never come close to suicide, I have had many days this past 12 months where I go to bed, 1/2 hoping I don't wake up,  not knowing how I could possibly do another day in this body.  I look to the future and see little hope.  I have no partner, no children (I always thought I'd at least adopt), no career or job to go to, little social life, and few hobbies.  While I do have pockets of feeling less hellatious, they inevitably end with me doing too much and crashing - feeling once again powerless to create any kind of quality of life.

At some level I'm depressed. It seems the more sick I am with the M.E. (the more the fevers, throat, ache, fluiness, chest ache, dizzy spells, fatigue, weakness, and tremors), the worse the depression.  My specialist calls it "reactive" depression, but it's depression of some kind nonetheless.  However, I'm not worried about taking my life at present.  And I hope none of my friends with M.E. ever get to that point.

I think the "cure" for the depression and M.E. combo will  come when they find and offer treatment for sufferers.  If I wasn't forced to spend most my life in bed sick, would I be so down?  In the mean time, I hope that those who are close to that place (of suicide) feel they can reach out to others in the community (myself included) for support.  

Rough Week

So very sick

Feel just terrible and fluy. Lying in bed all day, feel too weak to lift my arms, to walk, to do anything. Hours pass as I just lay here doing nothing at all. I can feel the ache/heaviness/malaise with every breath. What is this thing? This disease.....I want to scream....but don't have the energy.

The M.E. has been pretty bad this week - if 0% is dead and 100% is healthy energy, I'm around 20%. Afternoons are the worst.

A friend who also has moderate severity M.E. told me she wrote herself a letter on one of her better days so that when she was crashed terribly she could read it to herself to remember it's not always like this. I really need to do that - what a great idea.

On the positive, my gut is improving...I'm eating some real food. Toast even! (gluten free). Still issues but for sure improved. Still waiting on biopsies (should know this week), but my NP read me my endoscopy report. Turns out there are three gastric ulcers and class/grade B GERD as well.

OK, well I'm going to rest some more....hope tomorrow's better. What on earth is going on here? Why am I so weak and sick almost everyday lately? I'm a limp vegetable.

An outing and continued sickie woes (and moans)

I thought I'd post a photo of me having fun. When the ice went out on the bay here, my roomie and I went on an outing. Most the ice was gone, but one beach had these huge floating ice chunks (in fairly shallow water) which we had fun floating on. They were like little rafts.

Otherwise, life has been pretty difficult. I have a decent day here or there (meaning maybe 20-30 % of the energy I had as a well person on a bad day), followed by days of more like 10-15% energy. I can't discount the awful deconditioning I must have gone though over the last 8 months.

My main frustration is just with my inability to do much but lay in bed. I tried a few little 5 min sessions with gardening tasks in the yard, but stuff I could have done 2 years ago is undoable. My legs get weak and shaky, as do my arms and it's much more than weak muscles...it's sick muscles....like with influenza.

It probably doesn't help that my calorie intake is so low (although it is improved). Can you believe 6 weeks after a stomach infection I'm still not able to eat anything but liquid and soft foods? I still don't have my biopsies back (they said 3-4 weeks and it's been 2), but it's

hard to believe some small ulcers and mild gastritis are causing all these problems.

I'm living on mashed sweet potato, soup, soup, yogurt, soup, and avocado with the occasional smoothie thrown in. I've stopped loosing weight, but I'm not gaining any.

I had another tele health appointment today with my specialist. She really is a very caring soul. Sometimes I feel so terribly alone with this illness. People treat it so dismissively on the whole. It's nice to have one medical ally. However, after almost a year of hoping, she was unwilling to prescribe florinef for my OI/POTS due to the fact that a side-effect is ulcers. So I'm back to square one with the dizziness. Extra salt, compression stockings, wiggling my legs.

However, she does want me to undergo an echo cardiogram both sitting and standing. I hope this isn't just more useless testing that will tell me nothing and will end with no treatment.

On the positive, I'm loving the weather (sunny and coolish) and getting excited for gardening (2 months too early for this zone), so my roommate built me some cold-frames. I'm going to have a fun time trying to grow some things early.

I'm even doing a little reading these days for my PhD.

I'm very frustrated by how sick I am after almost 10 years with M.E. I'm mostly frustrated with how few options I have and how little control I wield over my own health. So often I feel at the mercy of every strange whim of this illness and I'm just sick of it. There are 4 things I want to do this week and I just don't seem to cope well emotionally when it comes to "paying the price" for doing too much. I'm just not a good sick person.

Perhaps the wise thing would be to pick one of the four outings and fore go the rest (unfortunately one of them is my taxes...which means an outing...such a stupid thing to have to "crash" from).

Short update: Enduring a slew of tests

I have been very unmotivated to Blog...partly health, partly just lack of desire to share. Almost like I just want to "get through" stuff at the moment..that's where my energy is.

So a quick point-form update and a warning I may not blog again for a while.

Went to the gastroenterologist Wed.

Due to my long period w/o being able to eat, he scheduled my scopes (upper and colonoscopy) for Friday.

The upper scope was fine pain-wise, but the colonoscopy was incredibly painful the whole way through. I remember crying with the excruciating pain and asking them to please stop. I don't think they gave me enough drug, honestly.

He came out afterwards and I was sure there was something wrong with my colon however,

he found no inflammation and only a small polyp which he removed. He thinks it's probably spastic colon (IBS) which is the exact diagnosis I DIDN'T want....another syndrome, yay. However, there's a chance it could be microscopic colitis...we'll wait for the biopsies.

He said the pain of the scope was in part due to the fact that I have a narrow and very twisted colon. Still, I had a colonoscopy 10 years ago and it didn't hurt at all.

I do have multiple (he said a few) small ulcers in my stomach and he said the stomach itself was mildly inflamed. So for now I'm on a drug for ulcers which will hopefully heal them and help with some of the pain when eating. I didn't notice him do any testing for H. Pyroli which is odd as that's the bacteria that usually causes ulcers. It can be treated with antibiotics.

I see my specialist Tues. and I'll ask her to do the H. Pyroli test. I'm so sick of medical appointments. I'm hoping with this drug I can start eating solids again soon.

I meet with the Gastro again mid April to follow up on scopes, biopsies, and blood work.

One good thing yesterday was that he ordered IV fluids for me after the scopes. For some reason this seems to keep me from having as severe a crash. (Probably due to my OI). I slept 12 hours last night and am ready for a nap again...but the M.E. symptoms aren't near as bad as they could be.

To all my blogger friends, take care and I apologize for my recent lack of blog reading and writing.

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.