Daily Troubles

There are many situations I have found myself in, and sometimes still find myself in, that make me laugh out loud!  This is due to my wonderful illness that developed – out of nowhere I may add – in 2003 when I was 15.

Getting up off the floor is near impossible.  If I have to get onto my haunches or sit on the floor, it is often easier to crawl to a chair or the like in order to pull myself up.  If there is someone nearby then I will ask for their assistance.  Have to giggle at the fact that when I am down I am stuck there!  No squats for me – tried this once at gym & promptly fell on my bum before having to ask the instructor to lift me up again.

Getting off a chair, or even the loo is tricky at the easiest of times – trying this in heels is next to impossible without leaning on the table, pulling at the door, or having to call a friend in to help.  Note to self – do not lock the door to the loo when you are feeling weak; you could be stuck there for a while!

We love our church.  I don’t know what we did before it.  We have developed amazing relationships there & the service gets you ready for the week ahead.  However, the constant standing up & sitting down for an hour long service can sometimes feel like running a marathon.  I need a snooze after them.  And singing (not that I am any good, people tend to block their ears when I start) is near impossible.  I can’t get the words out, it is an effort, & sometimes no sound comes out.  Maybe God is saying its better I just praise him on the inside?!

Sitting up on a bed is not fun.  You try & try, but your neck just seems to want to stay behind.  Your head doesn’t want to leave the pillow as your neck has just given up – it is easier to roll onto your side & push yourself up that way.  And don’t even talk to me about those chairs at a salon where you get your hair washed!!  When the lady washing my hair asks me to “just lift my head for a bit” so she can wash the back, I have to ask her to give it a push.  Thank goodness I go to a friend of mine so we can chuckle about this together – it can be slightly embarrassing when it is someone who doesn’t know.

Standing in a queue, shopping, washing dishes, cooking dinner, & so on makes you feel as if you have run a marathon.  I often use a trolley as a crutch of sort so I have something to lean on & carry me around the shop/back to the car.  The one time my very sweet husband offered to push the trolley for me as he could see I was tired & I almost started crying – if I had had the energy.  Now he knows to leave me ‘pushing’, & he often pulls it slowly from the front to help carry the weight.

Climbing stairs is like mountaineering!  One little step takes great effort & concentration – a flight of stairs is like conquering Kilimanjaro.  So if you see me taking a deep breath in preparation, laugh along with me & let’s do this together – no really, I do much prefer walking up stairs next to someone.  In fact when I was very ill my sister used to walk behind me & push my bum – I think we laughed more than getting very far but I appreciated the gesture.

Following on from the above, I trip over the smallest thing.  A carpet, grass, stone, you name it.  My feet don’t follow where I tell them & I can’t pick them up higher than just necessary without extreme concentration & watching exactly where I am going.  Walking in heels has become a fine art, one which I am slowly learning to perfect as my husband is a giant next to me & I like to look at his face rather than into his armpit!

Now, I am a girly-girl.  I like to look my best & in fact studied Beauty Therapy after school.  Have you ever tried to put on make-up after working out at the gym, & your arms feel like they just cannot hold themselves up?  Mine are like that almost on a daily basis.  When putting on make-up, I support my right arm with my left, & often lean on a counter to ensure I don’t just blob it onto my face.  I also had my hair cut short for many years as I could not hold up my arms long enough to tie up my hair (especially when I was at school).  This is my early morning workout – gym, who needs you!  I can wash my hair & do make-up & get a workout like you cannot believe!

I am a nerd.  A complete & utter bookworm.  In fact I cannot sleep without reading before bed.  It drives my husband mad as I will climb into bed complaining I am exhausted, & then stay up longer reading my book.  But holding up a book takes extreme effort.  My arms tire quickly & I often have to rest them on a cushion, or sit up again & place the book on my lap.  After a couple of pages (especially at night), everything goes a bit blurry from the double vision, & this is when I know it is definitely time to go to sleep.

When I tried to go to school my first year I was diagnosed, I ended up dropping my files & books more often than being able to carry them.  When I went back to school in 2005, I had an amazing friend that would pick up my bag after every lesson & carry it to the next.  He was such a sweetie – he was a big tough man that carried a bright pink school bag with a little Piglet keyring attached.  I felt for him but he never let me down, he was always there to lend a hand.  Now I battle with carrying heavy dishes, boxes, groceries or the sorts & more often than not end up dropping these onto the floor.  It takes me longer to lay the table at dinner or carry things to & from the car, but rather that than drop it all & have to start from scratch.

Washing windows, holding the steering wheel to drive, changing gears in a car, or any other tasks that involve lifting my arms can be totally exhausting.  Sometimes I have to physically put my whole body weight behind my arm to change from 2^nd to 3^rd gear!

Extreme temperature makes me miserable.  Hot/cold food, hot/cold drinks, hot/cold rooms, hot/cold weather, hot/cold showers/baths etc.  They exacerbate my symptoms & often leaving me feeling weaker than ever.  A complete & utter drain of power.  They are my kryptonite.  Luckily these can be avoided majority of the time thanks to aircon, but if you see me slowly melting, please pull me to safety.

I hope you can laugh along with me at some of these – tomorrow I will post some different ones.

This disease has been a huge learning curve, & I have had to figure out different ways to conserve my energy & cope with the day, especially now that I am working.  Luckily my work colleagues understand & are very helpful in everything they can be.  Husband is a saint as he cooks dinner more often than not, especially when I am feeling pap after an extreme day (you know, an 8-5 day with temperatures reaching 30 degrees – that kind of extreme!).  Mum still stresses about me, but I always will be her baby.  I am slowly learning my limits & learning not to push too hard.  It is just not worth it in the long run.  I have missed out on a few things, but I also realise that I have to go through this to get to a specific destination in my life.  There is a bigger picture.  I can’t see all of it right now, but I know that something great is going to happen!