Pull the mattress to the lounge!

This past weekend was a tough one.  It gave me a wake-up call, a shock & reminded me that I do still have Myasthenia Gravis – no matter how hard I try convince myself that I am Superwoman in regular clothing.

We have been quite hectic lately with so much going on – I work a full day, then on top of that we have been attending a marriage course; doctor’s appointments an hour away; engagement parties; baby showers; birthdays; kitchen teas; farewells; weddings and just general life.

I have been determined to have a social life & not miss out on everything around me; but I think it has just been too much for me.  I noticed that my talking was going down last week, but I thought it was just perhaps because it was THAT time of the month.  It usually does affect me, but this month was worse than normal, with a definite lack of energy & I was battling to talk & swallow.  I just felt pap!

There were many plans for this weekend & I was looking forward to each & every event that I had been invited to.  Unfortunately, by Saturday midday I could feel my body starting to give my signs that it wasn’t happy.  I was slurring my words quite badly, & eating my lunch took me over half an hour.  I couldn’t smile properly & I felt a bit faint.  I thought maybe it was just due to the late night on Friday & fell asleep at our friends’ house whilst “playing poker”.

Sunday was an early start as we were on duty at church & we are in charge of the breakfast team – i.e. we couldn’t be late!  I could feel I wasn’t myself & really struggled to talk to the patrons that I was serving.  My legs felt terribly weak, & I had to physically pick them up in order to go up the stairs.  I couldn’t pick up anything heavy, & when I did I felt like I was going to drop it almost straight away as my fingers couldn’t get a firm grip.  It was awful.  There is no way to explain it to anyone, except maybe those who have had a really hard workout & have fatigued their muscles beyond what is “normal”.  Even that doesn’t properly explain the weakness associated with MG – and it gets progressively worse the harder you try to just “push through it”.

I also hate letting on just how grim I am feeling.  I try so hard to keep a smile on my face & not let people see my weakness.  I tell my husband & he is also good at helping me & covering up my lack of abilities at that moment in time.  We tried to have breakfast at church but after what felt like an hour of battling through, I eventually gave up & had to throw my cold food away.

We got home (with me almost falling asleep in the car – something that hasn’t happened in ages) & husband pulled our mattress into the lounge so we could watch movies together & just chill.  I don’t think I even lasted 20 minutes before passing out!  I woke up 2 hours later to have a quick snack then climbed straight back into bed & woke up 4 hours later – with husband gently stroking my face & telling me I need to take my medicine as it was already overdue.

I missed out a kitchen tea & baby shower this weekend which makes me very sad.  But at the same time, I don’t think I would have coped with these events & it would have ended badly.  I honestly feel if I hadn’t slept away the whole of yesterday I would have ended up back in hospital.

It is so frustrating knowing I am not coping.  And that I cannot keep up with “normal” life.  I hate the fact that Myasthenia Gravis dictates what I can & cannot do.  I am worried because I know that CellCept helps me & does make me stronger & able to cope with life, but then I cannot have children for at least 6 months after stopping it.  I have to decide on my priorities & listen to my body.  I need to be strong & healthy to have a baby, & husband & I have said as soon as I have had a baby I will go back onto CellCept & build up my strength once more.

I wish I was strong & healthy.  I wish I could cope with a full day of work without wanting to collapse on my way home.  I wish I didn’t have to miss out on major events in my friends lives & that I could have a normal conversation without people without struggling to form every word.  The struggle of daily activities is getting to me at the moment & I sometimes feel like curling up in a ball & having a good cry.  I feel like I am not coping too well at the moment, but yesterday’s sleep made the world of difference to me.  Perhaps that’s what I need at the end of every week?  Maybe I need to slow down & take a step back from life for a while.  I wish that I could cope with a full day of work.  I wish I could actually talk like I used to – without the slurring, problems, & difficulties.  I wish my hands were strong, my legs able to walk & my eyes able to close.  I wish I could smile a full, happy smile; & not look like I am snarling at people.

I am trying so hard to stay positive & keep a smile on my face.  I don’t want people to worry about me, or to simply see me as “the sick one”.  What should I do?  What CAN I do?

Friendships - and the hardships

This week has been a very tiring one – both emotionally & physically…

It is my first week back at work since my op & I am finished.  I didn’t think I would be so exhausted, but my MG has been flaring up this week, with my talking going down by lunch time & sometimes I am unable to swallow my dinner.  I try keep on a brave face for those at work to not pity me, but I often find myself wishing for my bed.  It doesn’t help that it is so cold at the moment! Extreme temperatures are not good for us snowflakes – constant shivering means that our muscles are moving, which leads to muscle fatigue.  I also find I am battling more & more with the use of my fingers – typing can sometimes be a bit of an effort & making dinner is a bit of a chore currently.  Sometimes my hands just need to have a little snooze!

I have been thinking a lot about my friends this week, & how sometimes I feel it is easier to shut myself off from the world than to keep trying to fit in & just get hurt again.  Friends seem to be making plans right in front of me, without including me, & it reminds me time & time again how much I miss out on.  Just this week, I have had 2 friends make plans almost every night & talking about how much fun it will be – with no invite extended to me. 

Am I being oversensitive?  Perhaps. 

Are they sick of inviting me & I turn them down because of my MG?  Perhaps.

Do they think I am no fun because I am tired & slur my words?  Perhaps.

Do they presume I would rather just go home & sleep than spend time with friends who will make me laugh & cheer me up?  Perhaps.

I really feel like I have been missing out on a lot. 

Missing out on the fun evenings with friends; the dinners to celebrate the end of exams; the random braais or get-togethers; the gymming;  the nights out…  Sometimes I get so mad about having MG.  I feel like I have missed out on a lot, & I often feel that friends have given up on me.  Maybe they don’t have patience for me anymore, or the fact that I have often cancelled at the last minute.  I don’t enjoy cancelling, but I would rather stay at home & sleep than be out in public unable to talk or battling to swallow.

Sometimes I think it is my school friends who know me best & still love me.  They have seen me at probably my worst & are more understanding of when I cancel or stay at home weekend after weekend.  For example a very good friend of mine used to wash my hair when I was at hostel & didn’t have the energy to lift my arms.  There were plenty of giggles & we still joke about it to this day.  They were there for me to lift me up when I was down, to help me find something that I could swallow besides hostel food & to break into the kitchen to cook popcorn once I was finally able to swallow & was starving.

It is not easy meeting new people or having to explain why I am “thspecial” or why I am missing yet another social gathering; or why I have to ask to go have a snooze on their bed whilst there for a braai.  We have a wonderful couple who are so understanding with my sleeping the whole time – I think the very first night I met them I passed out on their couch, with all the dogs cuddled next to me.  I am lucky to have people like that in my life.

Currently I feel like I am all alone in the world.  I know it is just a phase.  I have had this feeling before & got over it.  I am very lucky with my husband who understands & knows to ask before making plans; or will happily leave a braai/party early so I can get home to sleep.  Same thing with my family – in fact they often encourage me to rather stay in than to go anywhere!  I can’t miss out on more than absolutely necessary though.  I have missed out on so much, & I HATE it.  I hate that I am not involved in planning of certain events; or that I am sleeping when that funny moment happens or when everyone is seeing the New Year in.  It hurts when I see yet another picture on Facebook or Whatsapp profile pic showing my friends out having fun.  Yet again I wasn’t included.  Yet again I was probably sitting at home watching a movie or sleeping.  Yet again I was thought of to be the boring old married woman (because yes, I have been told this is what I am!).  I have been told time & time again that I used to be fun & I used to go out partying – that was when my MG was co-operating.  Believe me, if I could I would still be doing it every night.  Sometimes just getting out of bed to go to work is enough of a chore for me, & going out jolling would probably be the end of me.

Thank you to my friends that have not given up on me.

Thank you to those that still continue to invite me.

Thank you to those that still come to visit & make me laugh.

Thank you for the memories.

Thank you for loving me even when I am not myself, but a melting snowflake devoid of all but the basics.

Thank you for including me.

Thank you for making me feel special.

Just remember, I am not saying “no” because I choose to.

I am not saying “no” because I don’t want to see you. 

I am not saying “no” because I don’t want to go out. 

I am saying “no” because MG has dictated to me that I will not be leaving my bed. 

I am saying “no” because I just don’t have the energy to say yes & put on a happy front.

I am saying “no” because I don’t want to draw attention to the fact that I am battling to swallow & talk.

I am saying “no” because I don’t want to ruin the fun.

I am saying “no” because I don’t want to take away attention from the guest of honour.

I am saying “no” because I don’t want to drag my husband from yet another event early.

I am saying “no” because I hate letting people down by saying yes first, then at the last minute realising I can’t make it.