December Updates - Sad News

November and December were terribly difficult months.  My dad's health declined significantly over the last couple months to the point where he ended up in the hospital on December 6th. He was eventually moved to a hospice floor in a different hospital on the 12th where he died two days later on December 14th. I sat by his bed for much of it. He was conscious on and off especially the first 5 or 6 days but stopped eating (couldn't swallow) and stopped talking.

Since then I've done a lot of paperwork and caregiver/executor type tasks. Right after he died I was so exhausted I barely moved from the sofa for a couple days. I was so dizzy, lightheaded and exhausted, utterly exhausted.  We've already had the funeral at his church in Kitchener, the city where he spent most his life so I've also had to travel.

How am I? Incredibly sad and now depressed. For 4 years this man has been with me for part of almost every day.  While it was a struggle sometimes, especially recently when he required more care and was visibly suffering, mostly it's been good. I feel so blessed and grateful to have accumulated years of memories and times together with him.  Not only that, but my dad loved me to the moon and back. Everything I did seemed to make him proud.  To be loved and appreciated like that is pretty rare and I doubt I will ever experience it again. Importantly, having experienced my mom's passing 4 years ago I very often tried, and remembered, to consciously savour my time with my dad. I told him often that I loved him and hugged him lots.

Everywhere I go, everywhere I look lately I have memories of him. I miss him terribly. And to be completely honest, I feel done. I just don't feel there's anything left to live for. I don't want to keep going without him, all alone. For the last couple weeks I've been living in a daze, getting stuff done, but besides the waves grief and loss, feeling nothing for anyone or anything else - no interest, no enjoyment, no affection....just nothing.  I just don't want to move forward. I feel devestatingly lonely without him in my life. I don't know how I'll move on.

Updates

First, I want to thank people who have been commenting. I still can't figure out how to post a response even as anonymous (very strange), but please know that I read and appreciate them.

I am not so well today (crashed). I have been doing a lot. I think that while I am no means better from the M.E., I am overall improved. I seem to be able to push harder and longer than I have the whole time I've been ill. That said, I have had two infections already this fall (which ironically sometimes gives me an energy boost). The most recent one was either a severe cold or influenza (came with a fever) and lasted over two weeks.

It's been a tough month emotionally. I was headed to a wedding for one of my best friends and got only 90 min south. The residence where my dad lives called to tell me he was rushed to hospital as his vitals were all crashing. Needless to say, I returned home and despite exhaustion continued to visit him and negotiate the various elements of him being in hospital then returning home over the next week.

He is back home but his dementia has now gotten significantly worse to the point it's very very difficult for me to be around him.  It's like I've lost the person that was mostly there just a few weeks ago. I also deal with some kind of issue everyday I visit (mostly hygiene related).

It's no wonder I've crashed what with still working part time, dealing with highly highly energetic puppy, and my dad and his care.

This week, I got out for a couple hours with a friend to paddle on a local river. Most the leaves have left the trees so winter is just around the corner. I'm also including a couple dog photos taken after our first snowfall last week. Another friend and I did a short walk to a local waterfall with our dogs.

Ripple looking all grown up

My sweet old gal

Drudgery

The drudgery of chronic illness, is that it just never goes away. Ever. After years and years of feeling horrible but "looking great" it gets old. For some reason lately it's hitting me how much of my adult life I've spent sick. And how being sick has stollen so much of my (potential) life/living - missed events, missed work/employment, miss recreation, missed relationships, missed travel, missed friendships and time spent with friends. Years and years have passed.

I'm getting to an age where more peers are encountering health problems. I feel empathy. Although selfishly this also makes me sad because I know my window to improve or get better before my body ages is closing fast (aka unlikely).

I've had a tough week healthwise so I'm feeling blue, whiney, and sorry for myself.

Some good things have happened lately. After a hospital visit a couple weeks ago, my dad has stabilized due to some medication adjustments. He is by no means better, but he's holding for now.  I also got a week or so off around labour day and spent four days in the woods on a lake. For two of them a friend joined me. It was so mentally and emotionally healing.

As for this most recent crash/relapse, it's likely because I'm doing too much. Day after day after day. Last Sunday I drove out to watch a dog thing and I shouldn't have. Monday I woke up crashed (expected) but a week later, I'm still waking up every day crashed. It really hurts/aches to take a deep breath, like there's a deep seated infection in there. My gut is off, I'm lightheaded most the time, and I feel fluy, achy, sore throat, completely wiped out and just overall awful. And yet no one can tell from the outside, and I feel there is no one TO tell.

Seriously no-one seems to give a rat's ass. Why would they? It's gone on so long. No one ever asks how I'm doing anymore.  Maybe I've scared them off because years ago when people asked I always felt awkward and embarrassed that I was still so sick (but looked fine). I would deflect.

And what do you say to "How are you?" when the truth sucks so much? "I still feel like bunk every single friggn day, some days and hours are worse than others but there are no words to describe how sick I am all the time."

I feel so alone and unsupported. Being this sick constantly with two invisible illnesses makes life incredibly isolating. Add to that - when I do interact, all anyone seems to point out regarding health is either what I've managed (to force myself to do) or that I look great/okay. It is so lonely making I can barely stand it, particularly on my crash days. It's like I'm physically fighting this horrible monster that's trying to ravage my body - no one can see - it thus it's typically downplayed or completely unacknowledged.

I really feel that outside my dad and the dogs, there is no-one who'd more than bat an eye if I dropped off the face of the earth.

On that cheery note, here are some photos of my camping for the stalwart folks who still read my depressing rants and vents (thank you by the way). I'd love to hear how you are doing (honestly) in the comments - whether you have a chronic illness or not.

Please can we come in the tent?

There were cool mushrooms everywhere

Up in time to watch the sunrise with a cup of coffee

A rare snuggle from Rip

When you lay on the ground a lot you notice the trees and sky

Sunrise paddle on glass

Selfie with my old gal

No Wiggle Room

I am in a 'period of worsening'. I refuse at this point to call it a relapse, however, it's been around 2 weeks of 'pretty bad' now. My sore throat has been worse (mostly constant, but still mild) and it hurts a lot to take a deep breath. I'm fatigued and weak and dizzy/light headed and shaky. I feel viral and heavy. This all affects my mood which is lower, and I'm very easily frustrated.

Try being a caregiver for someone with dementia and congestive heart failure while feeling horribly ill and weak yourself. Seriously, I hope that I am not morally weak for my constant lack of patience. The other thing I've noticed with this worsening period is I have no leeway to 'push'. I've been getting away with overdoing it for months and months. Now if I edge a bit healthwise one day then do something, the next day I am back in a deep pit of un-health.

So here I am complaining (again) that this illness sucks. Duh! Nonetheless I'm hoping to escape for a few days at the end of August if at all possible. I am still in the midst of marking, but should be able to pull it all off by next week. The summer here is quickly closing and I need a serious break/breather.

Please send many healing and strengthening vibes my way. Also send joy - not sure how to find mine these days.

July - Busy Busy Summer

The most intensive (six week online) course I teach falls in the summer. I hate being so busy during the best part of the year.  I'd rather spend my limited energy out enjoying the big lake and my pups.

However, it's a course I like teaching and it pays pretty well so I agreed again to do it.  Unfortunately, with the added strain of my dad's poor health and a young pup to care for, it's been very challenging.

My dad was back at emergency last week because his breathing was so terrible. There was a noise when he was inhaling that made both me and his nurse practitioner (NP) worried. She said she wanted X rays and if she ordered them it would take days maybe a week or more to get the results.

She asked me to take him to emergency (yuck!!! it's awful). We were there 6 or so hours and discovered after X rays and blood work that the cause is his pleural effusion (edema or fluid around his lungs) is causing the breathing issues. It's all related to his heart. The Dr. was wanting to admit him, but he also was okay with releasing him given his oxygen saturation wasn't bottomed out.

My dad had trouble even managing the hours we were there with my constant attention, I didn't force him to stay at the hospital. His confusion/cognitive/dementia issues cause him to be agitated and staying at the hospital would make these all much worse.

Not surprisingly since the incident, I've had to spend even more time over at his place helping him. I hit a wall on Friday. I couldn't bring myself to work at all I was so crashed and unwell and depressed and overwhelmed. Thankfully I bounced back and am managing to plug along. It's been poor timing coinciding with my intensive course. That said, there is never good timing for your father to be so ill and facing 'end of life' is there?

Wish me luck. If I'm not on here for a while it's because my life is a whirlwind and I'm just trying to get through each day.

June Updates

I'll try to make this short.

Life continues to be pretty challenging. My health is not good. I am exhausted, weak, viral and very dizzy. I almost got in a car accident 2X!!! yesterday I was so dizzy driving around (my dad, errands).

Then again today he had a dr. appointment as well as banking that had to be done (tax payment was late).

Last week, I did a round of labs for my new specialist. After 5! yes 5 intravenous iron infusions my ferritin is up, however, my red blood count RBC is mildly low!!! therefore I'm mildly anemic!  How can this be after all those weeks and effort going to the hospital for treatments?

My WBC was down to 3 (4.5-11 is normal) with mild neutropenia (again). No doubt as per usual there's nothing to be done. It sucks to be suffering like this daily with no recourse. And I'm just utterly exhausted doing daily tasks and taking care of my dad and puppy. My dad's having issues I won't share here but the burden of managing his care is overwhelming me at present, I'm at the end of my rope.

On the positive, one of my best friends visited last week and come hell nor high water I was determined that we would retreat to the woods by canoe for a couple days as planned. And we did!!! It was two nights but importantly one full day out on a beautiful wild northern lake where I was able to unwind, listen to the wind and the loons and the birds (instead of traffic, construction and lawnmowers) and forget all the responsibilities of daily life.

We took Teags along and I found a dog sitter for puppy.  I'll post a few photos.  Since the trip I've been even sicker. However, I still have two weeks until my next online course starts and it's mostly ready to go, so I'm determined to enjoy these weeks and rest as much as I can.

Sick Day

I've had some decent days lately where I've had the thought "my M.E. isn't too bad anymore".

I've been going for short walks, taking the dogs swimming, and taking my dad on short outings. (I've also been on vacation and avoiding working on my next online course.)

Some days, though, I feel just horrible. This is one of those days. I can point to at least three things I've done in the last couple days that might have caused this crash.

It's clear to me I will never learn. I will over-do and over-do til the end. If you don't have M.E., one thing that's really tough for some of us with either mild or moderate severity is that sometimes when we're doing an activity (shopping, taking on the phone, cooking etc.), we don't feel too badly, so it's hard not to keep going.  In other words, to avoid crashes I can't always listen to my body in the moment (e.g. this activity is making me feel awful) because crashes are very often delayed.

For instance, the friend I walked with two days ago probably thinks I'm fine because she doesn't see that it's 36 hours later where I'm curled into a ball on the sofa crying due to the flu symptoms, ache, weakness and utter fatigue.

On the other hand, I certainly know at this point around where that threshold is. So ideally, I should be more careful to avoid the over-do, given how horrible crashing is.

I crashed yesterday but still did too much. Today I can barely walk, my legs are so weak and shaky. My body aches, my joints included. I feel viral and icky. To be quite honest, I wish my life were done. I know this feeling won't last once I bounce back, but right now I don't want to even take another breath (which makes the ache worse). Being in this sick, weak, viral body for almost 17 years is just too much, I don't want to do it another minute.

So I'm here to vent. This is when some better emotional coping tools would help. I have a few, but am often left feeling alone, desperate, and depressed when I'm crashed or relapsed. One technique I use is to remind myself that the worst of this doesn't last - I always bounce back. And while not necessarily a coping tool, I also try to use something like reading or a movie to distract myself. These are also the days where I regret puppy. She needs exercise and I just can't.

Speaking of puppy, a few weeks ago she learned to swim. So here is a video of one of her first ever swims.

M.E. Awareness Day

Yes, it's come around one more time - May 12th, M.E. awareness day. This June will mark my 17th year ill - not sure if I should celebrate (I'm still here) or cry and scream?!

To all my fellow sufferers out there, kudos to you for enduring this horrible often invisible and dismissed illness.  We are all clearly made of steal - by necessity.

Appropriately, I'm in a crash today. Hot and cold, dizzy, sore throat and lymph nodes and chest/breathing ache. Oh right - muscle weakness and fatigue. Also that indefinable icky achey fluey malaise.  I wish there was some type of alarm that went off when I was over-doing to remind me not to.  It seems that even if I was crashed only a day or two ago, as soon as I'm feeling a bit better/stronger, I  completely overdo.

The last couple weeks have been tough.  I came down with influenza!! of all things at the end of April, beginning of May.  At first I just thought it was a terrible cold and I was being whiney, but then the fever hit. I'm doing better now (just a little coughing).  Then on top of it all my dad has not been doing well, along with heart/breathing issues his memory problems and confusion have increased a lot. I'm over there multiple times a day dealing with something. I won't bore you with details.

Anyways, thanks for all who read my laments.  Everything is not bad all the time. I have some nice things in my life, and puppy has gotten a lot easier lately.  We have a new routine in the morning where I get to lay in bed much longer which has made a big difference.

Here is a good article in CNN! about Ron Davis and M.E. research: http://www.cnn.com/2019/05/12/health/stanford-geneticist-chronic-fatigue-syndrome-trnd/index.html?fbclid=IwAR2iG1tO1tACS_i5y0z0kDeTl6_OGTWb8PhfWRi-aste90--wII9lXArzE0

Life is Challenging

First, I want to say I don't think the 'comments' are working which is quite frustrating. I can't reply to comments you post even as anonymous. I've monkeyed with the settings and everything seems to be fine so I am not sure how to fix this issue. If you don't mind, try leaving a comment and we'll see if it will post. I might switch my blog to another venue if this keeps up.

My dad's health situation has gotten a whole lot worse. He is in congestive heart failure. It's still almost two weeks until his appointment at the cardiac centre so last week we ended up back in emergency for an entire day just to get help with a medication change. It's so hard to watch him suffer like this. I'm over there more than I have been since he moved (thank goodness it's only a few blocks away).

My own health (surprise surprise) isn't great. Although to be fair I'm writing this while crashed having gone to my friend's/roommate's concert last night. I was having an energy moment and just thought - I'm doing it. Since finishing my contract last week I've barely done a single fun time-off type of thing between my dad's medical and mine.

I had another iron infusion last week (my 3rd of 6) and for some reason the IV caused me a lot of pain this time. I even had to have them end the session early. I didn't want to get a reputation as pain sensitive or a complainer but it was so painful! I managed to hold my tears back until I left the ward - burning pain all the way up my arm. My arm still hurts two days later (Dr. google has informed me it's peripheral phlebitis) but it's almost better thank goodness.

I am so sick of being sick. And I am not being careful. As soon as I get a good moment I go out and spend my spoons. I also push through ALL THE TIME to do things with my dad including helping him with daily care. What I'd really like is a vacation.

New Specialist

I have a new specialist, however, she is not an M.E. specialist. She is an internal medicine Dr. who specializes in haematology.

My white blood count, as those of you who follow this blog already know, tends to run low. Specifically, I get a low grade neutropenia fairly frequently. This is common in a number of autoimmune illnesses and with chronic viral infections. The new specialist also explained that this can happen after a severe viral infection (like hepatitis or mono).  I asked whether "even after 17 years" and she said yes.

She tested me for a bunch of the ones I've been tested for before (various anemias and autoimmune illnesses mostly). And while many doctors don't buy into the idea of a chronic Epstein Barr or mono infection she does think this is possibility in my case (that my body never fully fought it off). Either way, we both agreed that antivirals weren't a good option (partly because I've tried so many already with no real improvement and the side effects are pretty awful).

She is actually familiar with POTS!! which has never happened for me before outside the autonomic testing lab I went to Hamilton (and my M.E. specialist way back). Most doctors in this country (in my experience) seem pretty unfamiliar with it. Thankfully, she was not dismissive of the M.E. either.

She is testing me for a few more things (autoimmune, inflammation markers, and hepatitis) but given past experiences I don't see any of it coming back positive.

She also convinced me to try a treatment for my very low iron/ferritin stores.  I've had these for over a decade because I can't tolerate ANY version of oral iron without severe gastrointestinal distress, and I really mean severe. I am receiving iron infusions at the hospital once a week for the next 6 weeks.

I had my first one this week and while I didn't have too many side effects (thankfully) I am horribly horribly crashed. This, I think is from everything I've been doing as a result of my father's heart condition and fall, puppy, and to wrap up my course/teaching for the semester. I am feeling so ill today there are no words.

I think you need a photo of puppy.

Ripple with a raven feather

Back to Emerge.

Last spring my dad tripped and fell. We ended up at emergency however, thankfully, he did not break his hand.

This time he fell in his room (a fall rather than a trip) and scraped his face. There was some debate, but I decided to take him in just in case. It turns out he may have been dizzy due to A. Fib. When we got to the hospital his heart was all over the place. The emergency got busy throughout the day Sunday so it was hard to get anyone to tell us much at all. They just kept monitoring him.

For someone with a chronic illness and a father who couldn't manage alone (he freaked out when I left for 15 min), it was a trying couple days. They ended up moving him to a cardiac floor so I got home at midnight (then back the next morning).

He is now back home with some nursing coming in and the resident staff (PSW) checking on him. While not the main issue his face is now horribly bruised and swollen. We are now loaded with appointments in the next two weeks.

I don't seem to be able to catch a break lately. I have puppy who still needs a fair bit of focus (although it's getting easier and I love her a ton already), a pile of marking I need to do, and - oh right, my own appointments.

I'm seeing a specialist about my frequent low WBC (white blood count). Unfortunately if history serves I will be told I am a completely healthy woman as my bloods are otherwise normal (not sure why I'm going).

Wish me luck over the next couple weeks. I have a feeling my dad might become harder to care for but I'm trying to just get through each day with these emergencies that come up.

Extra Challenges

I consciously and deliberately brought a new challenge into my life despite all the other challenges I face on a daily basis. For instance, working part-time while ill, caring for my dad while ill, and just being chronically ill!

The good news is while it's still really really tough, puppy has gotten easier.

She now sleeps through the night most nights (in her crate). She can also behave enough to hang out with me and Teags in the living room where I spend much of my awake time lying on the sofa. I'm still expending more than my limit of energy, but I'm getting closer to what I can manage without being constantly crashed. This week has actually been pretty bad health wise, but not all of it is due to puppy.

Also, I am forming a bond now with puppy.  Her personality is emerging and this has made a big difference. While I would probably love any dog I met on some level, the human-canine bond (in my experience) is not instant. I think the fact that I dealt with the young puppy stuff while feeling almost constantly horrid doesn't help. That said, I remember it took some time to really bond with Teags.

As someone who trains dogs (and did before I got ill), I think that training piece helps. When you train with a dog (with positive techniques), part of what you're doing is attempting to communicate. To communicate well, you need to really get to know the other individual, what they like and don't like, what motivates them. Through our time learning together, we are getting to know each other and this helps (I believe) with the bond. Ripple has learnt some basics like sit, down, target, wait, how to crate, and now we are working on a solid retrieve (this is essential as it will be a big part of how I exercise her given my inability to really exercise).

I'm now at the point that I really love the little gold nugget. She is becoming family.

I have had so much help with her it's ridiculous. For instance, the last two Fridays someone has taken her overnight. She goes to a puppy school sometimes two mornings a week (also funded by friends).

So that's my update.

Very Crashed.

For whatever reason, since coming down with M.E., late winter/early spring has always been my worst time of year. I can't figure why, I have some theories, but they are just theories.

This year I've taken on more than I have since getting ill. I have daily dad check-ins and often small care things (today taking him to the bank). I have a little puppy, and I'm also working part time from home.

I'm not doing well at all. I have been crashed a lot since I got puppy. This past week has been the worst yet and then we went and lost an hour with stupid daylight savings.

Today I feel so ill there are just no words for it. I want to crawl into hole and die. Anything to take away this horrible fatigue, weakness, breathing/chest/flu ache, shakes/internal tremor, lightheadedness and even body and joint ache today.

I have had SO MUCH help with puppy. Friends have helped almost every day and friends from a far have bought me walking, puppy care and training sessions. I have been so touched by the gestures of help. It's made me feel so loved and cared for.  Over three weeks in, and I'm still asking for or using help almost every day.

Puppy is coming along. She is sweet, feisty, confident, brave, and intelligent. She makes me smile and laugh a lot.

I think just getting a little less sleep a night, the constant getting up and down (or going to the door), and the sitting up much much more than I'm used to is taking it's toll. To be honest, I don't really know what to do.

Thankfully, in three weeks, the bulk of my course will be done (except marking) so hopefully I can tread water until then. I love the little monster and don't want to call it quits, she's already family. But I'm also so sick today it's scary.

Here are a couple more photos of my little Ripple.

Puppy

My puppy has arrived. I am in love with her but she has made life very very hard. I knew it would be hard, but I wasn't prepared for how difficult - how much energy she would take.

I am trying to work part time from home and between puppy, my father and work I am in rough shape. I've had some help from friends which has saved me so far from calling it quits.

On the positive, she is an absolute joy. A (mostly) confident vivacious little trouble maker. She also loves to curl up on a warm lap and cuddle. Watching her learn about the world, witnessing her firsts,  has been absolutely amazing. Here are some photos.

I've named her Ripple (but Riptide fits her too).

Illness course: Improvements and/or adjustments?

First, here is a heart wrenching poem about living with M.E. written by an online friend and fellow sufferer: https://www.omf.ngo/poetry-submission/united/

There are some other great poems in the series so if you have time, take a look.

I wanted to write about my illness course. For instance, sometimes I wonder if I've improved over the years or just adjusted my life and expectations so much that I interpret my health as improved.  The first year or two I probably attempted the most activity (life, work, exercise, social) in order to continue on with my life. Year one was horrible, but I also did the most.

It's so long ago now trying to recollect, but years 2-5 I feel like I was at my sickest.  Then things just plateaued for the most part.  I've experienced what I call relapses - periods longer than 2 weeks and up to 3 months where I've been sicker and lost considerable function. However, I always seem to plateau back to that same level of crap :)

And then of course those horrid  'crashes' which are the effects of doing to much - for me, these arrive between 24 and 48 hours after doing too much but typically last less than a week. It's like having a mild case of influenza but the weakness, ick, and dizziness is influenza x 3.

Another reason it's so hard to know if I've improved over time is I've both de-conditioned and aged. I've been sick going on 17 years, more than 1/3 of my life. It's hard to know what living in healthyish late 40s body might feel like.  I have no idea.

One thing that's come with both age and years of suffering and being limited is an understanding that this is the life I get - life in a sick body. Which means for me, some things are worth crashing for (not relapsing, but crashing).  The last few years I've been playing with fire a bit in that I'm pushing myself pretty hard.  I'm working part time and trying to be a care giver for my father, and I'm trying to eek out some non-work and care moments as well. While I do love being able to work, I do NOT ever want to live again in that relapsed body. It is absolute hell on wheels.

Has this fear held me back? Yes, likely, on the other hand it may have also saved me from going too far, pushing too hard.  And having lived this M.E. life for over 16 years, I've learnt something about where that line is (although I can never know for sure).

Right now I am crashed. Even standing a few minutes and my legs are shaky.  I overdid it yesterday trying to haul a piece of heavy garbage out of the snow and carry it to the car.  Today I can barely lift my arms.  No, I did not strain a muscle, this is the M.E. effect of exercise or 'pushing'.  It's like nothing I ever felt before M.E. but if I had to compare, perhaps if you exercised some muscles to the point of complete and utter muscle weakness and lactic acid burn (it's not this but it's the closest I can come).  However, with M.E. this effect shows up (for me) one or two days later. I get the same if I try to shovel a little snow. Oh and then add flu-like symptoms, shakiness, dizzies.

I won't harp on about the crash though, I should have known better.  I'm trying to prepare my house and yard (very slowly) for my new arrival in just over a week.  Yes, I went and did it, I'm getting a puppy! Maybe the stupidest choice I've ever made, I'll let you know soon enough.  I have had lots of offers of help, though, so hopefully with my village I can make it work.

If you have M.E., what has your illness course been like? Are you improved, the same, or worse? Do you fluctuate year to year?

Happy New Year! Why I'm Grateful

I'm feeling grateful today. It's January 2nd and I've spent the last few days (except the 1st) preparing for the online course I'm teaching next semester - I'm really enjoying it. This has me thinking back over the last few years and the challenges and struggles I've faced as well as thinking ahead to what's coming.

I try not to do too much worrying about the future or the past, it just puts me in a bad place. When you have a chronic illness (or two) and there is no cure and no real treatments, I believe it's best not to get your hopes up too much. What I've learned after 16 years is that, at least for me, it's important  to make the absolute most of the abilities I have, the few good moments I have, and try not to think of how much left there is to endure/suffer or put my hopes in some future cure.

That said, I could use a few less people in my life who think it's "not that bad" to be sick everyday or that it's just a matter of will power, "look at all you're doing", or who believe thinking on the bright side on my behalf is equivalent to being supportive. Which doesn't mean I'm not grateful for what I do have and can do.  I absolutely am.

Here's a list of things I was feeling grateful for today:

1. That I was able to get an education while ill (and fund it without working).

2. That because of this education, I have a part-time flexible job that I have successfully done now (on and off) for almost 3 years!!! Not only does it give me a sense of self worth, but unless you've faced trying to get through life with almost no income, I don't think you can really understand how horrible and crippling it is.  I'm still quite low income, but the extra I earn makes an enormous difference to my quality of life and I feel so so so so lucky that despite illness/disability that I have something I can do from home in bed. I realise most don't.

3. This will sound odd, but I'm grateful that no one really close to me died last year. After a couple really hard years of loss and grieving it was so nice to have a break. (I'm still grieving my mom, but at least I didn't incur another big loss).

4. I'm grateful (I think) that I'm getting a new dog, a puppy in 2019! Insane! and maybe unwise?  Back to the income thing, I'm trying to figure out how I am going to manage this on my income, but I am so looking forward to having a young life to love and nurture and train.

5. While I'm grateful for friends (I have the best friends). I'm feeling quite distant from most of them lately.  With work, my dad, and my health (inability to travel much) it's been too long since I've connected with some of my nearest and dearest.

I hope you have some blessings/good things in your life these days? If not, or if they are hard to see and feel through the veil of illness or other challenges, hang in there. I've come to believe that life in reality is really tough (and sucky) for a lot of us a lot of the time.  That said, I want to make the most of, and be grateful for the small things if at all possible when they come around.

We had a big snowstorm right after Christmas and I was snowed in for a few days. Here are a few photos of what looks a bit like Narnia.