Visiting Friends: It's Always A Mixed Bag

Visiting friends is always mixed.  On the one hand, since I never feel well, any visiting means 'sucking it up' and visiting while feeling ill.  This is hard, and only those who are chronically ill can "get it".

I say this not to be like, "oh you don't get me if you're not sick" but because when someone is acutely ill, lets say with a bad cold or flu, they don't try to function on the whole.   If they are as sick as I am on a daily basis they say "I'm sick",  and take a day off work and stay in bed.

Frozen river (from car)

I don't think someone who is acutely ill can really fathom being this sick/ill all the time.  It took me two years to get my head around the fact that a person could be this horribly sick every single day and not get better or for that matter, die.

I'm not talking feeling a little 'off' or 'really tired' or 'unwell' like when you function with a cold virus.  I'm talking so sick that you could be dying, and when you realize you aren't dying, sometimes you wish you were, so you didn't have to look ahead to a life of endless sick hell. And not that every moment is that severe, but I can count 5 times in the last week where I couldn't bare another moment of sickhell.

And it doesn't help outsiders that I don't look very ill, so most people (especially those who don't know me very well) assume it's not that bad and/or I must not be very tough.

So those parts of visiting are all hard.  And unfortunately, it takes not only a physical toll, but also an emotional one (for example, just talking to people when I feel horrible is emotionally straining).  Then, when I travel home I usually crash or worse relapse afterwards, so not only do I get home and am even sicker, but I feel as if I'm recovering emotionally from a trauma too.

On the positive there are also great things about these visits.  My home life on the whole is incredibly lonely.  My roommate and I hang out socially/visit very little.  While just having someone living in the same house when I'm so housebound is useful and I'm not complaining,  I do get pretty lonely as outside my roommate I have no real friends in this city.

I can't say that about visiting in Minnesota.  I see people everyday and visit every day with the people I'm staying with.  I have friends from my past come by where I'm  staying too (because they know I'm in town and I'm not good at outings).  It was so nice to feel so much love, and that people really enjoy my company.  I ate a LOT of good food, watched TV with people (a nice change), celebrated a friend's Birthday, and even played a board game called "Settlers of Catan" twice.  And while I crashed afterwards (from the sitting up I think), it was worth it because it was so much fun.

So now a week or weeks to recover (hopefully the prior).  I have two specialist appointments (gastro and cardiologist) in the next two weeks and I'm hoping to get back to my daily PhD studies.  I'm moving into the research phase soon which at least will be different.

So on the trip home, I got some pictures of the snow (we had a storm and got 8 inches) and also a few GREAT photos of Lake Superior.  It was very sunny and the ice was sparkling again and the windchill was wickedly cold.  But I bundled up in layers and we got out of the car for a stretch and for me to enjoy the outdoors for a few moments and take photos (of course my camera froze as per usual in the cold).

Not a great shot, just wanted to show how 'sparkly' the ice and water was

Blah

I'm sick and tired of being so awfully sick and tired.  I can barely lift my arms today, muscles are so weak…almost fell trying to walk because my legs are weak.  I'm crashed (maybe??) from doing a little too much.  I'm ready to be home and we may have to postpone due to a snowstorm.  Feeling a little sorry for myself and, well, just sick and exhausted and weak.

Visiting Friends

I am visiting friends in the small town where I used to work and live.  It's a four hour drive from home, so coming here means figuring out rides (I can't drive that far due to dizziness and the inevitable terrible crashes that follow when I try driving very far).  My lovely roommate and friend drove me all the way here.  Some of the drive is along the Lake Superior coast.

We had fun and stopped a few times to look at the ice (which was beautiful the way it was refracting the sun), pick up some food, and even spend a few moments looking at art in a gallery that's along the way.

 photo does not do justice to how beautiful it was in the sunlight

The next day I was pretty crashed and wished I hadn't come.  Then both dogs ran away (mine and my friends').  I had no car and can't walk very far so I had no way to go find them.  Later in the day (after they'd returned) the two dogs got in an awful fight and I was too weak and crashed to pull them apart.  It sounded like they were killing each other.  I finally managed to separate them.  We laid in the snow for a while (I had one collar in each hand) because it took so much energy to separate the dogs, I didn't have the strength  to stand up for a while.

Two days later, my arms are still feeling the M.E. muscle weakness I get after I try to do anything strength/muscle-wise (this is a very unique muscle weakness/tremor/fatigue, nothing close to anything I felt with tired muscles prior to the disease).  It's almost like a post exertional malaise for muscles.  Anyways, after the fight, I cried (admittedly) but tried to stop myself because I knew I didn't even have the energy to use on crying. At least both dogs came out relatively unscathed.

Thankfully, the trip has only improved since then.  I've spent lots of time in bed resting, online, and watching TV on netflix.  In the evenings I've visited with my friends some and eaten yummy food.  They go to bed early and work during the day, so it hasn't been too draining social-wise.

Today, I tried to sit up for a while to do a little art and noticed my hands were purple.  I took my heart rate and was at 130 (postural tachycardia) so I'm back in bed.

At the end of my last post I said M.E. is a life sucker.  That is true.  One example is a visit like this.  I would love to go into town, do some shopping. Also, skiing and hiking and dog sledding.  These are all things I used to do regularly when I lived here.  At best, I can sit up for an hour or two (if my feet are elevated) and visit with a friend.  If I'm not feeling too icky, it's not a miserable experience.

I'm sure those who are ill understand the conundrum of living life with a chronic illness.  Either you try to do little things that make you happy (toned down as best as possible) and risk feeling terrible during and/or after due to the effort, or you remove yourself from the world….do nothing but rest and basic needs as best you can (food, bathing, etc.).  It's a tightrope to walk, and only we have to live with the consequences of doing too much….and so we make the best choices we can to get something out of life while minimizing suffering.

On another note, I ran across a blog entry this week and thought it was so good: http://jesscfs.blogspot.com.au/2014/03/diagnosis-anniversary-and-update.html

A Couple Interesting Items

I read a study that came out last month showing that there may be an autoimmune basis to POTS (postural orthostatic tachycardia) from which I (and many others with M.E.) suffer.  Here's a link to the study.  http://jaha.ahajournals.org/content/3/1/e000755.full

Unfortunately, it was a very small study and pretty tough to read unless you are well versed in anatomy/physiology and biochemistry. Hopefully they will repeat it with a larger sample.  

To be honest, I'm not surprised at this research.  I know for me, M.E. is mostly an illness of the immune system. Both M.E. and the orthostatic intolerance started when I got a severe mono infection. I hope it leads to more awareness and better treatment for POTS.  While my cardiologist is one of the nicest Dr.s I've ever met, he has little knowledge about OI, and more research like this will hopefully lead to more cardiologists having expertise.

On a completely different note, here is another project or resource for those living with invisible chronic illness. It's called the thrive show put together by Jennifer Brea (who is also one of those working on the documentary "Canary in a Coalmine").  Especially if you are mostly home bound, it might be a nice way to feel connected to the larger community of suffers as well as an educational resource.  It's hard to say, as I haven't explored it too much yet (she just launched it).  https://plus.google.com/u/0/101935666847847366319/posts
or https://www.facebook.com/thriveshow

I am in crash mode right now.  I had a couple late nights, one where we watched the Oscars here and made a bit of a party out of it.  And maybe my body just knows I'm on a break from writing/researching while I wait for my committee to read my proposal.  I've been feeling especially weak and fluy and dizzy.  Also, it hurts to breathe as if someone scoured my throat and windpipe with a scouring pad.  I just feel heavy, sick, awful.

Sorry for not being around much lately --- either if you email or chat with me, or just follow my blog updates.  I was trying so hard to stay focused on my PhD work and since having a break, I've been feeling so wiped out, I've been avoiding social outlets…even when they are pleasant, they drain me.

I hope folks are doing as well as possible.