How To Pass The Time - Spoonie Style

I thought, I'd give you all a well earn rest after making it through two quite technical & hard going posts to read by doing what I guess is a "Day in the life of me & M.E".  I also need to give my poor little brain a break from all the technical stuff too!

So here it is, how I go about my day & what I get up to: 

Monday 11th August 2014

For the record, today was quite a bad day so I was less active than normal, not that I'm very active any day really.  But today I'm dealing with double Post External Malaise or payback:

9am or not long after I woke up.  I'd thankfully had my first unbroken nights sleep in what seems like forever!  I slowly let myself come round & gain the energy to actually move & get out of bed.  This usually takes about half an hour or so.

Around 9:30am, I'm out of bed.  I put on my lounge pants & t-shirt.  Then I slowly make my bed & pack up the things I need to come down stairs with me for the day into my messenger bag.  Before leaving my room, I feed Sheldon Fish, as once he sees me move, he's at the side of his tank pestering for food!

Before heading downstairs, I stop by the bathroom to have a quick wash, today is a no shower day as I simply do not have the energy for one.

It's now coming up to about 10am & by this point the pain is kicking in, as is the flu feeling, the very fuzzy head & a few other symptoms.  So I down my green veggie juice:


and my first load of medication & supplements:



Then, as my lovely mum makes me a cup of tea, I go off into the lounge & sort out the stuff in my bag that I want out & grab my duvet.  It's freezing here today & as I'm feeling so rubbish my duvet is must:


Then I get settled in for the rest of the day.  I'm in no fit state to move much at all today.  I only just about managed to do a bit of my Animal crossing, like the bear minimum of the tasks you have to do:


Once that was done, I pretty much did nothing at all until about 2pm, or maybe just before.  So for almost 4 hours I laid in a kinda dark room: 


Under my duvet with my eyes closed.  I struggle to sleep during the day, so when I lay with my eyes closed, I'm not sleeping but I do tend to zone out.  This means I'm actually getting some proper rest, mentally as well as physically & that's what I struggle with most days - decent mental rest, mainly because I find it difficult to not doing anything at all.

When my pain can no longer be ignored again, I somehow find a little bit of energy to get my lunch.  Another green veggie juice, followed by a pack of breakfast biscuits, a cup of tea & my next round of medication:


It was at some point between me trying to zone out & my lunch, that two of my friends were having a party in a group text session I was included in.  Now my phone is permanently on silent as I simply cannot stand the noise of it going it off on the best of days.  But the vibrate was just as bad today (normally it doesn't bother me) but I was feeling so rough & my head was pounding so much, that my own voice was hurting me.  In the end my iPad was silenced & my phone was banished to the hallway stairs.

An hour or so after lunch & when the pain killers had started to kick in a bit, I checked my iPad & this is what I was greeted with:


There was actually close to 80 messages by the time I began to read them & oh man how I love my friends!  Yes ok, the constant buzzing of my phone at first, really annoyed me but I soon remedied that & there was no way I could stay mad at these two for even a second.  Their banter & pictures were just the pick me up I needed!  I'm so grateful that I have these two in my life now because they make my daily life quite entertaining to say the least & help me not to focus on my situation so much, which helps me stay positive, even though they're almost 4,000 miles away!

So after catching up on all the messages & slowly browsing through a couple of my social media sites, I again put my head down & close my eyes for some more quality rest.  At some point during the afternoon I was joined by the Dex cat, who actually is never very far away from me on bad days:


Once 4:30/5pm came around, I managed to find a bit more energy to make myself some dinner. That was nothing more than a small chicken sandwich with some no egg, no dairy & no gluten mayo (nicest mayo ever!) a granola bar, more tea & more medication:


Shortly after having this & with the arrival of a couple of extra noisy people in the house, I retreated upstairs to the comfort & quiet of my bedroom:


It's here I stay now, with my companion:


Thankfully my head is beginning to clear (that's why I've managed to write this actually on the day) so I should hopefully get a good nights sleep. Just as a side note to show how awesome my two friends are, they're still at it!  My phone & iPad are still going crazy with messages after 6 hours!

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It's now after 10pm & I've spent most of the last two hours, messaging with one of my friends, cuddling Dex cat & then having moments of being laid down with my eyes closed.  I'm now properly in bed & just having another cup of tea, yes I drink a lot tea, I'm British, it would be treason not too.  I've also got some human company for a little bit, my mum is sat with me.

This really ends my uneventful day.  I've had varying degrees of symptoms today.  However, now my head is starting to pound again & my pain is starting to make itself more noticeable.  I'm going to drink my tea & then it's lights off & head down.  Hopefully I'll have another night of unbroken sleep as I really could do with it.

Just before I do end this properly, I will give you some incite into my mood during a day like this, a day when most of it is spent in a dark room, laid under a duvet with your eyes closed, using most of your energy to breathe & using any slight feeling of improvement to get food & try to chat with friends. These days can be pretty soul destroying to say the least, especially if you take the crazy friend interactions out of the day & you can't deal with being around others because their voices hurt your head more than your own so are pretty much by yourself for most of the day.

During days like these, I usually have highs & lows throughout the day.  I try my best not to indulge the lows too much & try to find some way to bring me back up, que the friend interactions!  I'm thankful that I have at least one friend that actually messages me every single day, throughout the day, & keeps me going & encourages me so much!  They keep my focus off myself & on other more important things.

However, even with that help & encouragement, I do still get moments throughout the day when the low just hits, like a ton of bricks, & it can be really hard to pick up from that.  To be completely honest, somedays I don't even try, I just go with it.  I've done that a little today, just given myself some moments throughout the day to feel sorry for myself.  The trick is to try not to indulge those feelings too often, acknowledge them, as it can be good to do so, but then go with the thought that a bad day only lasts 24 hours & so try not to carry the negative over to the next day or let the negative over rule the positives, no matter how small they may be or seem to be.

So I'm going to say goodnight to my bad day & look forward to a new one that will hopefully bring symptoms in a strength that is easier to cope with & allows me to enjoy the day a little more.

I hope all my fellow M.E Warriors are doing as well as they can be & hopefully this will show that we are all in the same boat, we all have to deal with similar days.  It's not easy but we do it & when we look back, our success rate of getting through the bad days will be 100% & that's something to remember & hold on to.

Also remember we only fail, when we stop trying, so stay strong & keep going.  Better days are coming, believe me. 

L x