Quick Rant...

We had a long weekend this past weekend - Monday was "Youth Day" so we were lucky enough to be able to stay at home & enjoy time with the family - in my household this means husband, the 2 cats & the puppy.

It was very relaxed, low key & not much happened.

Then why did I go to work today with slurred speech & problems swallowing?

I didn't do anything hectic this weekend!

I slept most of it away, & only left the house for Father's Day on Sunday to be with the family.

Now I sound drunk/stupid/thspecial & have zero energy.

Not sure if it the stress of being back at work after my op; if my MG is just acting up again; or if I am just having a bad day.

AAAAAAH!

Very frustrating.
Yesterday everything was fine - I sounded; looked & ate like a normal person.  Now I go back to work & am around people & embarrass myself.

OK, rant over.

Sorry - just had to get that out!

Have a good evening, keep warm & take care of yourselves xxx

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.

Operation Time

Last week Thursday I was admitted into hospital to have some ovarian cysts removed, as well as to have my tubes checked out & ensure everything is in tip top order.

The day before I had to stay at home as I had to take 3 sachets of Klean Prep.  For those of you that have never taken this, thank your lucky stars!  It is grim.  There is no other way to put it.  You mix each sachet with 1 litre of water & have to drink that within an hour - sounds easy right?  Wrong!  The first glass isn't too bad - in fact I found myself saying, "This will be easy!  I've got this!".  That was until I had to start on my next glass, & my stomach was already full from the previous glass.  I finished the one litre & it started working straight away.  It empties your stomach.  Of everything.  The toilet was my best friend!  In fact I left a book next to the loo so I didn't have to really move.  I mixed up the next sachet with water & as I held the glass towards my mouth, I could feel goosebumps starting.  The smell, along with what I knew was coming, made me feel ill.  I managed to finish this litre with great effort, & even though I thought there couldn't possibly be anything left inside me, there was still stuff coming out!  I hadn't eaten since that morning so didn't have anything to add to what had to come out.  It was gross.  Thank goodness I was home alone that day!

We arrived at the hospital at 6am to check me in & husband waited with me while the anesthetist came to check me over & chat about what drugs he would use - as someone with Myasthenia Gravis, we should not go under anesthetic or have an muscle relaxants as our muscles are relaxed enough!  Luckily he told me had worked with quite a few Myasthenics so was confident & had this under control - this made me feel a lot better & a lot calmer.  The surgeon also came to introduce himself & let me know what he would be doing.  He said judging by the size of the cysts & all the drama that happened last time, they probably would have to do a big incision.  He would start with keyhole surgery & see if he could manage it that way, but I should expect a proper cut when I woke up.  I appreciated his honesty.  At least I knew what to expect!

I had asked friends & family to wear teal in order to raise awareness for Myasthenia Gravis on this day & also to show support for all of us snowflakes fighting an ongoing battle.  I am so blessed with all the support & love I received.  Here are some of the people who sent me pics showing their support:

I really felt the love that day & appreciate it more than you could have realised.  It really made me feel safe, secure, & honoured to have you in my life.

At the hospital the nurse came in with my sexy (teal!!) hospital gown, along with one-size-fits-all disposable panties that I had to go put on.  The look on my husband's face was priceless!  I just got the giggles - especially when I opened up the panties to all their glory...  They could have fitted husband & myself in them quite comfortably!  Anyway I got dressed & sat waiting on the bed for them to come whisk me away.

Waiting to be taken away!

I think the waiting to be taken to theatre is almost worse than the actual operation!  Luckily my wonderful husband was there with me, holding my hand & calming me down.  He kept me smiling & helped the time pass.  Eventually 8am came & they gave me an injection for pain, to calm me down & prepare me for the op.  It knocked me out!  (I am not a great pill popper so even Panado makes me sleepy!)

Ready for action...

They started pushing my bed to the theatre & husband came along with me.  He gave me my final kiss goodbye at the entrance to surgery & then it was go time.  Into the theatre we went, & straight into the operating room where the Gynae, Specialist Surgeon, Anesthetist & nurses were waiting for me.  I climbed across to the operating table & they covered me with blankets.  They put my drip in & gave me something to make me feel sleepy "in a few minutes".  Well, they had hardly put the mask over my face & I was already off in la-la-land.  I am not afraid of going under - in fact it is probably the best sleep you can ever have.  Nobody should fear that feeling - the doctors are in control & you are blissfully unaware of what is going on.  Then you wake up like Sleeping Beauty - all fixed & less the weight of whatever was removed!  Amazing!

I woke up some time later (4 & a half hours to be exact) in Recovery - shaking like mad.  I was FREEZING.  They kept putting more & more layers of blankets over me & eventually put a hot air blower under the blankets to get me nice & warm.  I had to wear the oxygen mask for a further 2 hours as an added precaution.  As soon as they wheeled me out, husband was there.  He jumped up, gave me a kiss & walked me back to my room.  I was still very dozy & apparently told him the same thing over & over again.  He gave me the best news though - they only had to do 4 little incisions.  I was so relived & thankful that I wanted to cry.

I was very sleepy for the rest of the day & only woke up to take my tablets, go do a wee (they were threatening me with a catheter so I had to stop that before it went any further), try eat some food & when my visitors came that evening.  I felt amazing.  I had a slight bit of pain, but nothing too hectic & I could move around without experiencing any nonsense.  It was such a relief to be rid of that dull ache that was a result of my cysts, & I was allowed home early on Friday.

I still can't believe it.  That was my shortest hospital visit ever.  The doctors all said they couldn't believe how well the op went & how quickly I bounced back.  The left hand cyst was 10cm long, whilst the one on my right was about 6cm.  Not your average cyst thats for sure!  No wonder I was in such pain.  They also said my tubes were quite badly damaged & are very thick.  I may have trouble falling pregnant, but right now is probably the most fertile I will be as everything is cleaned out & ready to roll.  I also believe in miracles.  This will happen for us!

I went to see a very good friend of ours who is a fertility specialist & homeopath & he has changed my diet (no wheat, no sugar, no alcohol, no coffee) as well as giving me supplements to get me on my way, & hopefully help with my MG simultaneously.  Through all of this drama my MG has been very well behaved - in fact I would say it even deserves a gold star.  It hasn't reared its ugly head & has let me recover from the op completely without trying to take over & control my life again.

So for now I am still trying to raise awareness for MG.  June is the Myasthenia Gravis Awareness month, so I have made little ribbons to give to my friends & family & am posting something about MG on a daily basis on my Facebook, Twitter & Instagram accounts.  The more people who know about MG the better.  Hopefully this will lead to more compassion, love, understanding & patience shown towards us snowflakes.

I am also hoping to create awareness through local media - newspapers, TV, radio, magazines & the sort.  It is not easy & people are not always interested but I am going to continue trying!  There is a walk in our little town on the 22 June & I am hoping to have shirts made to raise awareness for MG, as well as perhaps getting some branded helium balloons to catch people's attention.  I will not be running, but I will try complete 10km.  I will beat my MG & I will stay a positive snowflake!

So please, if I can ask you a favour, help me to raise awareness for Myasthenia Gravis & all the snowflakes out there.  Wear teal, make a ribbon & research what MG is.  Talk to people about it.  Show an interest.  Stay positive.  But most of all, let all the snowflakes around you know that you are there for them & you love them.