Taking it easy

I've been trying to take it really easy for the last two weeks.

As you know if you read this blog, overall I've had a pretty bad year and September was my worst September I can remember, and my worst month since 2005.

The accumulation of bed time is probably wrecking it's own havoc as my muscles are weak from both the disease and inactivity. Still, small attempts at activity lead to fairly severe crashing so I'm learning to ride this relapse and when I have a decent day, I'm trying (really really hard) not to over do it. On the positive, I've had some hours of feeling less fluy here and there.

My friends J & J had a cabin rented at a nearby park last weekend and I was able to go along. It was such a nice change of face and place. While I mostly rested there as I would here, I just really needed a change. I didn't even crash from it.

I had only one event planned this week - a lunch with a fellow PhD student (which I'd already rescheduled). That was today. Then a friend called this morning and we talked and by the time I got off the phone I was in tears. I felt way too sick for a lunch outing. Still, I rallied and enjoyed it some, but came home and fell apart. Way too much yet for this sickie. It made me so sad.

It's just going to take some time to pull out of this relapse, I think. For now, no more "planned" events of any kind - at least for a while.

I finally got a call about scheduling my next specialist appointment. It's going to be done by telehealth (like teleconferencing) and my NP (Nurse Practitioner) is going to sit in. I think that will be good.

I'm going to continue to fight for some treatment for the POTS. I have been drinking lots and lots, eating salt and salty foods, and not noticing much difference. I still haven't filled out my prescription for the hose though, mostly because I've only had a couple outings in weeks and weeks and those were for pleasure. The other night I was having a fairly significant dizzy spell and took my own pulse - 160 just standing doing dishes (I usually sit).

Interestingly, I was looking at a list of POTS symptoms and noticed that tremors are on there. It actually explains quite a few symptoms we've been wondering about.
http://en.wikipedia.org/wiki/Postural_orthostatic_tachycardia_syndrome
Infact, outside my immune/viral problems (which are significant), this list would explain pretty much the rest of the illness.

I'll post few photos from the weekend when I get them loaded, for now, I'll post some good photos from a near-by overlook at sunset.

p.s. I just wanted to add how much I appreciate all the support I get on this blog. I can't imagine going through this illness, let alone a relapse, without having people in my life who know how draining and difficult living with this disease is.

Work and Play

I was reading a book a while back about living with chronic illness by Patricia Fennel. The author was encouraging people with chronic illness and limited energy to make sure to divide their usable time between work, social, and personal enrichment activities. Even if there's only a few minutes a day here and there, to make sure these areas are all being fulfilled.

While a good idea, I don't necessarily think that all healthy people even do this. I know plenty of workaholics. And especially when I was first ill, I felt immensely guilty doing anything "fun" when I wasn't able to even carry out a portion of my work responsibilities.

Lately, I've been so ill I haven't managed social, personal, or work. I have a paper I need to edit that is hanging over me. During this relapse, I've opened the document to work on it six days in a row without accomplishing anything. Similarly, my roommates' parents were visiting so I took the small office and gave them my room (bigger, nicer with a queen bed). I pretty much lay on my futon on the floor of the office the whole time, only getting up for dinner and a shower or bath every few days. It was so embarrassing. But I was way too sick for anything social.

Personal fulfillment wise, I was able to read some fiction while laying around the past two weeks. Until last night, I hadn't been on a single out-of-the house outing in 11 days (except to sit in the back yard twice or walk to the alley and back).

My point being, that when you're really sick, it's hard to attend to any of these categories.

Finally, yesterday morning I had a little two hour window where I didn't feel like death and was surprised to find myself working on that paper. It made me realize how restricted I've been by this relapse.

If I continue to improve, the hard part will be holding myself back. I have errands I need to do and am just crazy of being cooped up in my room.

Challenging week.

Just another quick update.

I am still paying (I think) for going out twice last week despite being really sick. Perhaps I'm still paying for the picnic the week before, too.

I just spent 5 days almost completely in bed. I got up for little things and a couple meals, but simple tasks have me easily fatigued so then it's right back to bed to recover. I was able to cook a meal last night sitting on my stool, but took frequent breaks to lay down during the process. And of course it's not just extreme fatigue and weakness...there's also the flu like viral aspect.


I've been feeling so terrible, I even considered going to the hospital this week - can you believe it? However, there was nothing "acute" enough to put myself through the outing and waiting etc...

Finally today after 5 crashed days, I had a tad more energy and felt less fluey when I woke.
I decided to shower as I haven't felt up to it the last few days. But that was it - the shower flattened me....it's just amazing to me that something as simple as a shower can have me so exhausted.

However, that hour of reprieve pre-shower gave me hope that a few more days in bed might improve me.

I really wanted to try for a short walk today. I just can't help but think that despite being so sick, that I should still try to "move" a few times a day.

On top of it all, can you believe we have guests? My roommate's folks are here. It's probably about the worst week for having guests given how sick and non-functional I am. Five people in this tiny house. At least they're not my folks so I don't feel obligated to entertain....OK back to bed for me.

Sorry if I'm not caught up on blogs....once I'm rested or improved I will.

Mindless surfing, a little reading (fiction) and resting seem to be my main activities for now.

I also have my little yellow roommate (dog) checking in on me often. For part of the day she snuggles in with me while I read or rest.

Bed Day

I'm having a complete bed day... I had an OK hour this morning and then WHAM...terrible flu and weakness.

I did too much early in the week - two out-of-the-house outings. One was a two hour session at the U I promised I'd help with months ago. I was feeling terrible that morning but forced myself to go anyways.

Then I had an NP appointment yesterday and I knew (ironically) I was too sick to go....still I went (my roommate drove me). It was just a check-in because I've been doing so poorly, but really she doesn't have much to offer me. She did a strep test on my viral looking throat - no strep.

So I'm super crashed again today (I thought yesterday was bad).

Despite another bad week I've been coping a bit better...mental stamina was holding up until today. I really really hope tomorrow's better. It's days like these I need hope.

I'll post a couple photos from that paddle last week then back to resting for me.

Being tough and working through....

Another hard week under my belt. I had some definite ups and downs...the ups were two trips to beautiful outdoor places. One evening my roommate and I took the dog for a swim in Lake Superior. It was around sunset and gorgeous. I went in the water - it was FREEZING! but refreshing.

Yesterday we went for an evening picnic and short paddle. Arms were weak, but I managed to lily dip and steer and we were paddling down a beautiful little channel at twilight where the trees and sky were perfectly reflected in the water like a mirror (pictures to follow someday).

Seems like a lot right? It really is a lot and more than I should be attempting. Otherwise I was in bed almost all day everyday, getting up for lunch and dinner and maybe a little time on the couch in the p.m. I've been running an afternoon and evening fever now for two weeks.

I was talking to my Mom this week (who's been suffering terrible chronic pain due to osteoporosis and a degenerated disc). Her situation is very different and yet similar in that it's chronic. Chronic pain...I can't imagine. My problem feels like chronic flu or chronic viral immune activation....I said to her "I just don't know how to take this anymore day after day, year after year. How many more years am I going to have to live like this? How can I possibly manage?"

Her reply was "you just need to be tough". While this may sound a little insensitive, I know that's not what she meant and it made me think. She's right.

It's the mental and emotional part that lately has been hard. Just waking up each day and having to do it all over again. Somehow make it through feeling so terribly sick and weak and beyond tired....and having no way around it. But my mom is right....after nine years we can be pretty sure that it's not going away (it might, but there sure aren't any signs of it).

So I really have two choices. I either get through each day of suffering moaning and groaning (internally) or I try my best to hang tough. I really am on my own with this (meaning there doesn't seem to be anyone out there that can make it go away). I need to be tough.

Which made me think I need to start thinking more about "getting through" and "working through" each day rather than trying to find ways to escape and work around it. Basically, I'm trying to change my mind set.

I've been a little kamikaze lately - pushing really hard sometimes in order to do something fun. Then afterwards I pay the consequences in that I'm so terribly crashed and viral for days afterwards. Being even sicker afterwards means I get even more frustrated and depressed. It's a vicious cycle.

I need to find a way to balance it out a bit. Part of it is I'm sick of relying on others for everything....driving me places, getting stuff for me, taking me on outings. I want to take care of myself so then I go do things and end up crashed worse. Does anyone have any ideas?

Wanting to run away

Since that short camping trip in August I've been hoping to get away again. My plan is to have my canoe pack ready so I can just up and go if I have a few days and a window of energy. I'll rent the lightest boat I can, and head off into the woods/bush.

Is this beyond my abilities?

Yes and no.

I think I could manage it if I could just get out of bed (hahaha). I certainly have the knowledge to be out and safe on my own with 8 years as a year-round guide under my belt...although that was a long while ago now.

I've been crashed all week. I've had some OK hours here and there, but mostly I've just been laying in bed. If I have a decent moment, I do something small like: doing the dishes sitting on my stool, have a shower, check the gardens...

It really is a miserable existence not only because the fatigue is all-encompassing and overwhelming but I feel so terribly ill and fluey on top of it. The malaise, chest ache, and sore throat are at times unbearable. I'm always worse from about 1pm through 6pm where I lay in bed thinking - I really can't stand living like this for another single day.

I'm also struggling socially. I don't feel up to being around people (physically or mentally) and yet I'm never alone at home anymore - one of my housemates has been off work for four months now. For some reason on top of feeling physically bad, all of my interactions at home recently, end with me feeling really bad about myself as a person as well. I'm not blaming anyone here. I take complete responsibility for my emotions and behaviours, but I'm desperate for a long retreat AWAY.

I feel so trapped. Trapped in this sick body, trapped in this house, in this room, in this bed.

When it comes down to it, I'm in an awful funk. I think getting out in the woods would help and yet I can't "take a vacation" because I'm just too ill.

I went out (of the house) last Tues to help a classmate with some work and was so crashed that from Wed. - Friday I quite literally felt like I was dying.



I also went out Friday night to a wolf talk at a local park. Some friends drove. It was so nice to escape these four walls. The programme was at night and it ended with a wolf howl (to get the nearby pack to howl back). While the only howls returned were those of local campers, the stars were amazing. I hadn't seen stars like that for almost two years and sitting on the beach looking up was wonderful.

So now I have to pay for that 4 to 5 hour outing for how many days???? Sigh.

I wish I were more of a homebody, content to sit back and enjoy some simple low energy activities. I do love to read, and that really is a saving grace at times.

I believe I'm making myself sicker by pushing myself out of the house every time I can manage it. On the other hand, when I'm not pushing myself to get out, here at home I'm getting cabin fever and increased depression like you wouldn't believe.

So I'm going to continue to pack for my canoe trip and hope that either (a) it comes to fruition even if I pay the price for a year, or (b) keeps me distracted and dreaming in the mean time. For example, once again last night I was in bed looking at maps and canoe routes (smile).