I'm so busy: Doing nothing

I was just thinking that when I have almost no energy, and little things (like a bath, getting dressed, making a smoothie) take so much energy, that my days sometimes feel much fuller than they are.

I spend a lot of time resting from little tasks, and I also have scheduled rests throughout the day (11:30am, 2pm, 4pm, 7pm) even though I'm laying down most the time anyways.  Sometimes I delude myself into thinking I'm quite busy!

After 2 of the best days in what seems like a year, I'm back to feeling pretty crap constantly.  Monday night I did go out to a little dog class with my friend J., but by the time I got home, I couldn't swallow my throat was so sore.  I thought I was getting strept.  But after a good night sleep the pain was back down....just M.E.  So I've just been resting up from that....for two days (but it was very fun).

And what the heck, anyways?  How can being tired cause a sore throat and my glands to swell up?  Seriously!  I know that this is a very common symptom, but how, physiologically, can my immune system react so severely to minor activity that my glands swell?  It makes about as much sense as the rest of this illness.

Do you ever wish you could quit?  Like quitting a job (which I only did once), or an activity.  Sometimes I think, "I quit", "I"m done being sick!"....my body seems to have other ideas.

Spring and moments of happiness

My favourite city park...the creek is high today

I have had my best couple days in maybe six months.  After a depressing and infuriating appointment with a Gastroenterologist, I didn't think things could get much worse.  But for the most part, I put it out of my head and moved on.  I will never see him again. Decision made.

Signs of recent rain

It's been a spring-like week in Northern Ontario.  I live on the very edge of the boreal forest - the most extensive forest zone in Canada.  Spring here often seems very short.  It can be snowy and cold, and seemingly the next day, we have moved onto summer.  But the last few days the tulips have bloomed in the front of the house, and some of the bushes are covered in little leaves, just on the verge of bursting open.

Marsh Marigolds almost in bloom

Yesterday, my housemates were working on smashing an old concrete pad in the backyard (next week is free dump week).  I spent up to 2 hours outside, getting my pea patch ready.  Peas are one of my favourite veggies but the birds wreck havoc with my garden, so I built a little plot with bird netting covering it and planted my peas.

For a lot of the time I just sat in the dirt while the dog chewed a stick near by.  But it was so temperate out and pleasant.  And best of all, the fluiness of M.E. has eased up the last few days giving my body (and brain - just coping) a break.  It's been so amazing to feel less sick for a couple days in a row.  I've found myself feeling happy and content!  I'd forgotten.

So today I went to the nearby creek with my camera (and the dog) to enjoy some signs of spring.  I'm posting some photos of the outing.  The dog was exuding joy - swimming, running, and smelling the smells.  I spent quite a lot of time just sitting by the creek which was moving fast after recent rains.  I noticed little signs of spring everywhere.

spontaneous joy

I am so amazed how happy I can feel when I'm not having to deal with constant feelings of fluiness, heaviness, weakness, and fatigue.  So there are good days!!!  Hopefully more to come this summer.

More frustrating news.....

Well for those of you who've been following my gut woes, you know I've been waiting to figure it all out for a while now.  Last week I heard back about my biopsies and today I saw the gastroenterologist.

The worst part was when he started saying stupid things about M.E. or "post viral fatigue" is what he called it.  That got my back up.  I won't go into the details but according to him it's a problem with hormones and chemicals in the brain.  He asked, "Are you depressed?"  Sigh.

The only thing the biopsies picked was very mild chronic gastritis (stomach inflammation), and some esphopogitis (inflammation of the esophagus).  This along with 3 very tiny ulcers, (and GERD class B) does not account for any of the pain I get in my stomach after eating according to this guy?

My problem, I was told, is post-infectious irritable bowel syndrome and a lot of mumbo jumbo about "chemicals in the brain" once again.

I had some small cysts of various sorts and was told I should get another colonoscopy in 18 mo (however, that polyp was not cancerous) - not going to happen.

Despite the fact I told him numerous times I HAVE an M.E. specialist, he said I should see a local infectious disease specialist for the post-viral fatigue.  Even my friend (roommate, cousin) who went with me got frustrated with him.  She said, "Look, she's really sick".  I'd given up by then.  I didn't need to hear any more.

He turned around a bit when he realized I was angry and had "checked out".  He thought I should do an abdominal cat scan just so "we've covered every base".....

My conclusion: I'm never seeing that Dr. again.

And of course I'm still left with fairly constant aching stomach pain for two months without let-up, vomiting (including the last two nights after eating) and some diarrhea (although that seems to be improving).  Everything I eat hurts...it doesn't matter what I eat.

Honestly, I don't want to see another Dr. as long as I live.  They are all so useless in my experience.

I see Dr. B. (my M.E. specialist) again in a couple weeks.  Or maybe not, maybe I'll just sign off all Dr.s for good.  Am I any better/healthier since seeing any of them?

I'm so disappointed it's hard to put into words.  I thought for once I had something "treatable".  That someone could help and I'd feel better....that I'd be able to eat again without pain.

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).