Spring is here.

Spring often hits suddenly here.  While last week it was cold and rainy (it even snowed a little) this week the grass is turning green, the tulips are out and the buds are starting to open on some of the trees. I took some photos of my front garden tulips.

My health/energy has been fairly decent overall.  However, I woke up today feeling very leaden and achy.  I know I've been pushing it just a little lately with outings (generally more than two short ones a week and I go down-hill healthwise).

While it's a fairly personal topic, I've also been attempting to treat my bouts of low moods with a course of St. John's Wort.  It's been shown in some studies to be as good as an antidepressant in cases of mild or moderate depression.  I've been taking it about three weeks, and if I make it through a certain time of month feeling more balanced, I'll know it's helping.

Today, however, I'm feeling pretty "down" just because I feel so ill and weak and heavy.  I'm pretty sure if I could actually treat this disease/virus, that I would feel better emotionally, as quite often my low moods are connected to when the disease is worse.

The witching hour….

Thanks to all who read my "what you can do" post in honour of M.E. awareness day May 12th.  It was  more about "what you can do" for people you know who are disabled by chronic illness. It was focused on the personal level, rather than "what you can do" for those with M.E. on a bigger scale.

Of course you could write to your representative to demand better funding for M.E., or bust myths when you hear people spouting ridiculous beliefs about those who are ill, or give money to good research that's going on.  People have started fundraisers, or run races, raising money for M.E.  Others have created awareness videos.

Moving on from awareness, I wanted to write about the "witching hour".

I consider myself to have a moderate version of M.E.  People who have severe M.E. are bed-bound, too weak to bathe themselves, some are even tube fed, and yes, some have died from it.

I have been borderline "mild"-severe just a few times, too weak to walk or stand at all, too weak to talk in more than a whisper, too sick and exhausted to even watch TV…but mostly l live in the land of moderate.

I feel great empathy for those who are worse off with this disease….It's a horrible place to be, especially since, due to lack of research and the stigma associated with the disease, the chance to get any kind of treatment or medical support is rare.  It's rare for any of us, but for those who are severe it must add to the devastation and hopelessness.

Lately, I've been riding the roller coaster of M.E.
I realize that experiencing this roller coaster is evidence that I don't have severe M.E. in that  I have days where I feel fairly decent (still mostly home-bound), and days where I can't take another moment, I feel so ill.

I wake up almost everyday lately with ideas and ambitions for my day.  Work on my PhD stuff in bed, work on a lino-cut print, do an errand, do some small things in the yard…nothing overly ambitious, just things like fill the bird feeder, or a couple weeks ago, plant the peas.

But after my 1hr - 2hr PhD session working in bed each morning, (or even if I skip this session), around noon it all goes down hill.  I have called it the "witching hour" or "turning into a pumpkin" for years.  It's like coming down with influenza, it happens fast.  And while it is a physical worsening (my immune system flares), all sorts of feelings are associated with it:

• Panic, that I didn't get much done before the witching hour set in. 
• Surprise, that all of a sudden I feel so ill and weak, while minutes earlier I wasn't feeling so bad (which is pretty amazing given I've been ill almost 13 years, and dealt with this witching hour almost every day of those 13 yrs) 
• Sadness, that I can do so little, that this illness has, and has had, so much power over my life. 
• Anger, that I have to feel so awful every day, that I can't do even a portion of the very small tasks I set myself, that my life is seemingly going to waste, that I have no way out, no pill I can take, nothing!
• Desperation, that I have the whole rest of the day to get through - too weak to do much more than lay in bed or on the couch.  Some days this is daunting and overwhelming….mindlessly boring.
• Fear, sometimes rational, sometimes not.  Especially if I have to do something (push through while ill and socialize) or cancel something due to being so ill.  And there is always the fear of a crash being relapse, that I'll feel this bad, be this disabled constantly for the next 6 weeks, instead of until tomorrow morning, or that I'll never have a good moment again.

Not always, but often, around 7p.m. the worst of the flu symptoms and weakness lift a little.  I'm not as well as first thing in the morning, but I can breathe without feeling so ill and sick, like someone scoured my lungs with steel wool.

Despite the witching hour, I do get little things accomplished.  The dishes (sitting on my stool), very very short sessions outside, an article read or summarized.  I wish I loved watching movies and TV more, but I can't tolerate too much of it so I try to keep that as my evening activity rather than watching stuff all afternoon as well.

Lately, I've also occasionally been attending a dog class (with accommodations - basically, for the most part, someone else does the dog training while I watch with my feet up), but it's been so wonderful to get out of the house and interact with other people once in a while.  While on the one hand, I think it's been negatively effecting my health, on the other hand, it has been good for my social/emotional health.

On the humorous side, there has been a lot of crying associated with this dog class.  Sometimes I cry before going (because I want so badly to attend, but feel awfully ill).  At least two times in the last few months I've sat by the door with my bag packed ready to go, sobbing, trying to garner the will power to push through.  Then sometimes I cry after going, because it was a bad choice, I was so dizzy the room just moved on it's own the whole time, or it caused an immediate and horrible crash.  Finally, there's the days I can't manage to go at all, and I cry because it sucks so much to have to miss it.

I cry for missing the dog class, but also for missing out on so much - having a job or career, doing all the outdoor sports I used to love, going for a run, having a social life, dating, having children, earning my own way in the world.  Missing a dog class can trigger all the losses that have come with this &*^% &%$##$@ illness.

M.E. Awareness Day Approaches, What You Can Do.

https://www.psychologytoday.com/blog/turning-straw-gold/201207/what-those-chronic-pain-or-illness-do-want-hear

As I so often find, Toni Bernhard's posts hit the nail on the head.
While I've written before about the things people with M.E. and invisible chronic illnesses find hard to hear, on the other side, there are things you can do and say that are helpful and supportive.

If you read the link, Toni has some great ones.

May 12th is awareness day for M.E., and due to my inability to deal with the stigma and ignorance that surrounds M.E., I am a terrible advocate.  I advocate within my very small community of friends, and on this blog (albeit anonymously).  Otherwise, I can be found lying about, or avoiding revealing my diagnoses to avoid people's (often ignorant, dismissive, and sometimes inappropriate) reactions.

However, living with moderate M.E., I thought I'd share the top 5 things that people can do or say, that I find really helpful and/or supportive.  But let me also say, if you use these, don't do it just because you're afraid to say/or do the wrong thing.  Make sure you are sincere. For me, it's almost as bad to sense insincerity than to hear inappropriate and dismissive comments.

1. Helping….I think helping someone who's chronically ill is difficult.  I love Toni's number 2, it rings so true.  Having to ask for help puts the sick person in a very vulnerable place.  It's really hard to ask for help, and to receive help.  It's a constant reminder of all the things that I can no longer do, or that are especially painful/difficult for me. I hate having to ask for things all the time, especially things that seem small, it is really difficult.  For one, I want to be able to do stuff for myself, if possible.  Obviously.  I crash and make myself sicker all the time overdoing it.

Also, I don't want to be an inconvenience/burden to the people around me. If someone doesn't specifically offer to help, generally I am going to assume they'd rather not….and this is true of most people I know who are ill and at least somewhat disabled.  Like Toni said, the best way to help someone who's chronically ill is to offer something specific.

The more you know about what is especially difficult for the sick person, the easier this will be.  If you want to help someone who's ill and more of an acquaintance, ask a close friend or family member what specifically might be useful. Offering to take their child for an afternoon outing? Offering to run an errand for them? Offering to do something social with them within their limits e.g. visiting them at home?

Personally, I'm always so touched, and so grateful, when someone does something for me that they know is really hard for me.  Or similarly, if they ask, "Hey, I'm going to the store, do you need anything?"  It's still hard to take help, but it's super nice to not always have to ask.  When you offer, you are sharing just a little of the vulnerability with me.  For example, I could say "no thanks" to your offer.

2. Share your life with me.  I still get the occasional pang of jealousy when I see people my age, out in the world living their lives (e.g. someone out running, going to work, or interacting with their kids).  Or people in their 80s who are far more capable than I am (physically).  On the other hand, being so isolated and living such a limited life, I LOVE hearing about what my friends and family are doing. Because I can't do a lot of what I would like, I think it makes me even happier when I hear about the ways my friends are living their lives fully.  Just because I sometimes wish I could do it too, doesn't mean I'm not happy for you that you can.  And even some of the seemingly smaller mundane things sound like adventures to me. Feel free to share your life adventures with me, I can live vicariously.

On the other hand, I also realize that everyone has struggles and hardships.  I think sometimes people avoid sharing these with me, knowing what I face with my health every day.  But I love being a sounding board for friends, too.  It's one small way I can give something back.

While seeing people in hard places can give us perspective on our own situations, I don't see the point in comparing hardships.  When I'm having a really hard day, to be honest, it usually doesn't make it any less hard to know that someone's dying of ALS, unable to breathe, or that babies are starving in some country somewhere.  Just like despite the M.E., I can have empathy for a friend struggling in a relationship, or a family member who has a bout of influenza or strept throat.

3. Don't take offence, please keep asking. I have very very limited opportunities to make friends or even acquaintances.  The friends I've managed to keep are especially important to me.  Sometimes, when I'm feeling super weak and fluey, or dizzy,  I'm not up for talking on the phone.  If I'm doing an outing, sometimes I feel Okay, but that can go down-hill in minutes.  As well, after an event (sometimes even a phone call) I often crash, meaning I have flu-like symptoms and increased weakness.  It feels a lot like the first day of a bad cold virus or influenza (symptoms milder, weakness and ickiness worse).

My point is, if you invite me to do something with you, or if you call and don't reach me, or if I cut a call or outing short, it has NOTHING to do with you.  I absolutely love your company, and I'm touched you made the effort.  I'm just ill, and I can't control how I feel (unfortunately).

What you can do is keep trying.  Call again, invite me again.  And on my end, I'll keep making attempts too.  One of the hard things living here is I so rarely get any kind of invitation to do anything.  Even people who used to invite me, or made attempts in the past, have stopped….I'm guessing because 9 times out of 10 my answer is no.  I love it when my roommate "invites me" to watch a movie, or share a meal.  It's about the only interest there is in my company, at least where I live.  Don't give up if you have sick friends.  Even if we can't visit, attend, come, the gesture means a lot.

4. What to say. I guess if you're close to me, just be honest.  And we don't have to talk about me being sick.  It consumes so much of my life, it doesn't need to consume my conversations as well.  But as a rule of thumb, ask, don't tell.  Rather than telling me what I look like or how it looks like I'm doing…. "You're doing great, look at all you accomplish!", or "You look great! not sick at all.", try, "How are you feeling?" "Is this a crash day?" "How are you coping?"  "Are you dizzy? Do you need to get your feet up?"

Also, one of the things I hate, is when I tell my parents on the phone that I've been really ill or relapsed and they say "cheer up", or recently, "maybe the nice weather will help." If someone told you their cancer or MS had relapsed would you say "cheer up!" or "get some sun."?  Generally "cheer up" would be a response for "I've been feeling sad." although even for sad, not the one I'd go to.  On the other hand, a healthy friend told me recently "I hate M.E!" For some reason I was so touched. Maybe the acknowledgement in that statement that M.E. had impacted her life too (also, just the acknowledgement that M.E. sucks).

5. Show an interest.  I'm always so grateful when friends or family members do research about M.E. or POTS.  It takes the burden off me of always having to explain everything.  For example, when the "Canary in a Coal Mine" fundraiser was going on, I had friends who donated and shared info about it online.  I felt so supported and cared about. Really, I've got some pretty good friends.

Obviously, if you're alive on this earth you will have friends and family members with a host of conditions.  It's not all about me all of the time, I get that.  There are so many worthy causes and issues (environmental, social, health etc.).  However, when someone cares enough about what I'm going through to look it up, or get involved in some small way, I'm always super touched.  For example, even though I gave them to her, it meant the world to me when my mom cared enough to read a summary about POTS and Laura Hillenbrand's "A Sudden Illness" story.


If you have M.E. what do you find most helpful and supportive?

Do any of these ring true?

Will you do anything to advocate for the cause on May 12th?

Time for a Change?

Warning! heavy topics discussed below:

I'm debating making some big changes.  More than once this past year, I've wanted my life to end.  This is the morbid truth. My life is often pretty miserable (I feel so ill, weak, and dizzy), and I also feel very alone, isolated. What is the purpose of keeping on? How does my life add anything to this wide world? Who enjoys my company, especially when my energy, stamina, and symptoms effect my ability to be social?

When I returned from visiting my brother and his family, the depression hit hard again.  Outside of my housemate/friend, there's not a single person who cared or noticed I'd been away.  The dog walker maybe?  There wasn't a single missed phone message, or a single piece of mail waiting for me.

How purposeless my life seems.  Also, adding another layer, I've had severe insomnia since the trip.  Worse than I can remember having in my whole life.  I go to bed exhausted and doze a little, but mostly lay there for hours and hours, sometimes gaining only two or three disrupted hours of sleep a night.  At first I think it was due to the three hour time change.  But it's been almost 2 weeks. My usual sleep aids are doing little.  I've also added melatonin to the mix, to no avail.

This house is also weighing on me.  While in some ways I love having a home, (and it's a pretty cute one) there are many problems (some structural) that need to be addressed.  I have no extra income to address them, and I don't have the health to manage even some of the smallest tasks that somehow I thought when I bought the house, that I would manage.

So anyways, something flipped inside of me this week and I've started considering another option.  Options are something that are hard to come by when you're ill to the point of being unable to do a lot of stuff.

My disability income is contingent, for example, of me living in this province.  Since I spent the decade before getting ill out of the province, I have very limited community here.

However, I started questioning this week, why stay here in this city?  What other options could I consider? Is there somewhere else I could go and make a home for myself, somewhere where I might feel less isolated? Or is there a way for me to feel less isolated and disconnected here?

Also, could I be less burdened by a fixer upper not to mention all the usual maintenance a home needs? Could I find something much smaller and low maintenance, for example? (e.g. I've been reading a book about a tiny house, not that I necessarily want a tiny house, it just encouraged me to think outside the box).

I don't have an answer yet, but I've tried to put these questions out into the universe.  Is there a way to stop feeling so helpless and dependent (on the government, on my housemate) just wishing it would all end? Am I too sick and too old and too useless to find a life that's a little less lonely? Yes, I realize I'm very very lucky to have the security of a home to live in, and disability income to help me exist.  But even this is tinged with guilt (receiving social assistance) every time I think about it.

I feel stuck in a rut.  I want to start thinking in a less fatalistic way.  There's all sorts I can't control, most frustratingly, my health.  But what can I control? What steps could I take to deal with some of the worst burdens in my life (basically lack of employment and income, a home that's too high maintenance for someone who's ill, and most importantly, social isolation).

Recovering, or trying to.

Having travelled, I have no idea how long it will take me to recover.  On the one hand, I could be in a lot worse shape right now (I'm not as relapsed as I was in February). On the other hand, while I expected it, it is nonetheless frustrating to feel so ill and weak/tired.

I actually had a bit of a break-down this week.  I think a lot of it had to do with post-travel fatigue and lack of proper sleep.  But I'm also just so tired of being ill and unable to function.  There are so many things each day I either want to do, or attempt to do. I get so frustrated with my complete lack of energy/stamina or strength. Also, I'm lonely.  M.E. is so isolating.  I only have one friend in this city, and she has her own busy life. I just am not well enough to go out and meet people, it's not like I have a job where there's social contact.  I wonder sometimes what I'm doing here? But I don't know where else I could go?

As for recovery, I decided I would wait a week after returning home to start working on my dissertation again.  I have managed to get approval from my program for a medical leave this summer.  I still have to get approval from the university itself, and will find out next week.  If I'm approved, this doesn't mean I won't continue to plug away, it will just take the pressure off a little.

I still seem to have jet lag. I'm up until 1 or 2 am, then I sleep in, but I'm not getting very good sleep, or the 9 hours I seem to function best on.  If I get less than 9 hours, the M.E. seems to get worse.

Here's a print I created before I left on my trip, I just had to print the final layer, or key block.
Tell me which version you like better, the lighter one, or the darker/bolder one.

I'm also posting a few photos from around this time last year when the ice was going out on Lake Superior.  It might be hard to see, but they partly inspired the print.

As for the poll on the right, it seems that most of us with M.E. have some form of OI, and POTS is the more common one.

I was super lightheaded a few minutes ago and took my BP and HR.  It was 98/70 and 133.  I should maybe give the Florinef another go, it was the best drug for me although it caused significant pulsate tinnitus. I did start a beta blocker, but it made me super super lethargic and fatigued, more than usual if that's possible.

Travel, it's super hard.

Sorry I've been absent, I travelled to see family (my brother and his family).  As you might guess, it was really hard, although great to see them.  I stayed long enough that I had time to recover there before the return trip (the travel days were brutal).  While I'm glad I went (so far) I doubt I'll be keen to do it again for a long while.

I managed two outings while there, and spent a lot of time in bed resting, just like I do here. And I had to navigate stairs multiple times of day (the guest room was upstairs), which is more draining.  It would have been imposible during my relapse.  Now that I'm home, I have no idea how long it will take me to recover.

I sat beside a woman with MS on my last flight home and we commiserated about traveling and visiting while ill.  She had what sounded like similar fatigue, (I mean it was really similar, I've never heard someone with an illness outside M.E. describe fatigue that is so similar). We could relate. I very rarely disclose, but I shared that I had an immune disease triggered by severe mono.  She had had to sleep on the couch at her daughters rather than a spare bed to avoid having to do stairs so often during her visit.

Once I recover a bit, I will write more. But the area where my brother and his family moved, is incredibly beautiful.  I spent a lot of time (when I wasn't in bed or visiting) sitting on their little deck with my feet up looking out at the lake in the valley and the mountains beyond.

Here's a photo from one of the outings.