So discouraged

I’m not having an easy time lately. My mental health is iffy with a lot of anxiety, for months now, and depression setting in pretty hard this week. I’m in constant pain because of my back and something is going on with my CFS/ME. I’m completely drained and mostly bedridden. Because of this I missed three physiotherapy sessions, plus one of my DBT coping skills classes.

I’m so very, very frustrated .  I have no answers. I just have to try to hold on, rest, get to physiotherapy and class when I’m able, and wait till January 10th to see my psychiatrist for possible solutions to lessen this gnawing anxiety and boost my mood a bit. Having my paxil poop out on me after 10 years has created a real disruption in my mood and trying all these new drugs has been a year long, not to successful trial.

My suicidal idealisation is becoming stronger each day as I feel I’m just too worn out to keep trying. If the thoughts get too strong I’ll have to go to the hospital, but I really don’t even have the motivation to deal with all that shit. Hours and hours waiting and I’m usually told there is no space, so they just increase my meds and tell me to go home. I’m just so tired of it all. I only keep going for my family. I’ll end this on a note of gratitude for them, the support they give me, the love and understanding .

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TRUCE?

Getting mad, frustrated, anxious. My CFS has been in a slump for ages. My significant other says I’m losing the battle against fatigue, but I don’t like to think of it as a battle but more of a cold war. I’m just trying to establish some neutral ground and call a truce.

Step Counting and Puppies

Chester

Chester

I have gotten a puppy recently, 12 days ago, and I decided to wear my pedometer all day to see how much more I move around with having to walk and exercise the puppy.  Too much it seems. Getting so tired, weary and worn feeling now, especially since I’m winding down now from the Abilify affects, and I’m getting dozy and lazy from the Seroquel.  Often I skip it, it’s too sedating, especially since I’m supposed to take a clonazepam at the same time. I can’t afford to be all sleepy and drugged out with a puppy.

I must say I really loved the Abilify for its stimulating effect, even if it felt like I was on uppers. I knew that month-long hypo-mania caused by the Abilify would catch up to me. Anyway, now I measure my total distance a day on my ped, moving about the house, yard, walks etc., Walking the puppy and general activity brings me just under a mile a day (wearing my pedometer religiously – 0.9 miles last week) on average. 1 mile a day doesn’t sound like much I know, but for me, who used to get in maybe 250 to 700 steps a day (on a good day), it’s absolutely fantastic. My weekly step average last week was 2367.5 steps, while this week i did 2640.9 steps (1 mile). That’s about a 10% increase (0.9 miles to 1 mile).

Judging on how i felt yesterday and today though (drained, wiped, weak), I may have to drop it back and keep it more around 2450 steps this week and see if I’m less tired. I might just be moving up to fast. You’re supposed to work up to 10,000 steps a day or 4 miles roughly. I want to do this but might have to make my way a bit slower than other people, maybe a 1 or 2% increase a week, even 5%, instead of 10% all the sudden.

Plus the puppy went swimming the other day and I went in with him, and the current was strong and I was wearing a full length cotton gown and fell may times so soaked myself through, so I found that very draining. Well, off I go to Halifax., I certainly don’t feel like it, feel like I need to sleep 12 hours, but I’m supposed to meet with the day hospital people, so it’s pretty important I’m sure to show up if I want in.  They may even give me a date to start.  Should be interesting, I’ll let you know how it goes. TTFN

Being Sick Sucks Pt. 2

Hyperbole and a half

More like 18 years

 

 

 

 

 

 

 

 

 

 

 

 

 

 

When I feel well vs when I feel sick – two totally opposite polarities in my life. When I feel well, I wake up in the morning
feeling bright and raring to go, can’t wait to start my day, get at those chores, get outside, call people, participate in life.
I can get up, take a shower, wash my dishes, pop in a wash of clothes and go for a nice walk, and feel like a ‘normal person’,
a part of the human world, society. I’m energetic, happy, friendly,bubbling over with the joy of living. I’m interested in everything,I want to do everything, go everywhere, see everyone, just experience life to its fullest.

Unfortunately, this all leads to a lot of running around, staying out too late, doing too much, and then, Wham, the CFS catches up to me. Then I become very weak,extremely fatigued. It becomes a chore to even roll out of bed, by body feeling weighted, achy and sore, my mind cloudy, confused,dim. I sleep for 20 hours at a time, taking all my energy to haul my self to the washroom and back.

Some days I’m able to sit up and read a few hours before collapsing back into oblivion for another 20 hours, other days, I sleep round the clock, like being in a coma, barely conscious of anything around me. I can barely talk, it’s hard to get the words out of my mouth, my brain just won’t construct a proper sentence and it takes too much energy to move my mouth. Eating falls by the wayside, as do, of course any chores. Dishes pile up,
laundry doesn’t get done, dust and dirt collect, I run out of milk, egg, bread, juice.

The ferrets get bored and frustrated and wonder where their mother is. This can go on for quite some time, the longest being 3 weeks. Sometimes it’s only a day or two. Depending
on my stamina I can be up and going well a day or two, down a day or two, or go quite well for several weeks and be down several weeks. It fluctuates like mad.. When I’m down and out, my whole world shrinks. It becomes just me, my ferrets, my apartment, my trying
to cope and get through the bad spell.

I become depressed, frustrated, and angry. I berate my self, my body, for being sick and try to make it do what I want, try to make it WORK right, but the more I push the sicker I get. Then, finally, when I do feel better, have rested enough to satisfy my weird body requirements, I have 10 loads of wash to do, an entire apartment to scrub,
desperately needed grocery shopping to do, loads of dishes to wash, ferrets to walk, relatives to visit, phone calls to make, people to catch up on.

And then, of course, after the mad flurry of trying to catch up on everything (which I never do, there just isn’t enough time to do it all before I ‘crash’ again) after being sick, what
happens…..I do too much and end up back in bed! I know the secret is to pace myself, to try to balance my activity, but when I feel well I have a very hard time controlling my activity.

After being isolated, sick and tired I want to get out and live, I want to get ALL my chores done AND see my friends AND go for walks AND….
and everything. So on it goes up and down, i’m always searching for the elusive balance of energy that will allow me to function every day at, at least, some fairly consistent level.
The quest continues….