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
Tuesday, 17 June 2014
Thursday, 12 June 2014
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.
Saturday, 7 June 2014
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!
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.
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!)
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.
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! |
 |
| Ready for action... |
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.
Saturday, 24 May 2014
Birthdays!
Last week Friday it was my birthday – and I turned a
whole 26!!
What a wonderful day it was. I was so spoilt in every way possible. My husband woke up singing happy birthday to
me, then sent me back to bed (after I had iced my cakes) to bring me tea &
a full breakfast, along with my stunning presents. I arrived at work to a
birthday banner, balloons & a card signed by all my colleagues.
 |
| With my 2 special friends & work colleagues |
I got so spoilt by everyone here – socks (you will
understand me laughing at this if you know me…
Socks in my opinion are something you give to someone when you don’t have any
other ideas or when you don’t really know them.
My boss knew how I felt about them so got me some as a joke! I wore them around the office.); books of faith; a herb planter with herbs; a pen with my name on it & so many
hugs. We only work half days on Friday, &
I rushed off from work to quickly get everything in my car & head off to
the doctor.
 |
| My beautiful herb planter - even came with pink ribbon! |
Anyway, we spent the night with Mum as she lives closer
to my neuro & had lovely Thai curries for dinner. Where we live we don’t have this luxury, or
at least not that I know of so this is a huge treat. Poor husband got the “Jungle Curry” & was
sweating after about 5 mouthfuls. Thank
goodness Mum & I got a milder one so I could actually enjoy it. I got terribly spoilt by my mum with clothes,
books, & all sorts of lovely things; & my sister blessed me with a
Kindle. Yippee!! No more book falling on my face at night time
or when my arms have given up! And I can
take it with me wherever I go – because yes, I am that much of a bookworm/nerd.
The following day started with going to see my godson to
give him his present (his birthday is the day after mine! ); then popping in to
see my brother; before heading home where I had planned a tea party with my
friends. I wanted something different to
the usual & during the day, as I usually start going down from about 5pm. My nearest & dearest came to celebrate
with me & the table was groaning under all the delicious food. It was so lovely spending time with everyone,
but my late night on Thursday was catching up with me by the time everyone
started arriving. I was battling to talk
& was feeling rather overwhelmed by everything. Luckily people do understand & I do hope
everyone enjoyed their day as much as me.
I got spoilt rotten again with everyone bringing me such lovely things –
clearly they know me & my love for girlie things, relaxation, warmth &
chocolates. It was just a pity I couldn’t
enjoy the day more – I was battling to swallow & so didn’t get to enjoy all
the yummy foods available, & with my funny talking I didn’t get to catch up
with all my friends & family there.
I really do appreciate everyone coming & making the effort - &
for spoiling me so much! Thank you,
thank you, thank you!
When I got home that night, I passed out on the couch in
about half an hour - & woke up there after 11 while husband was still
playing Call of Duty with his “clan”. I
went straight to bed & woke up feeling a lot better on Sunday morning. I went with Mum to go visit my gran who lives
in frail care. We spent the morning with
her catching up & laughing lots.
Family is so important to me & I honestly don’t know what I would do
without them & all their love.
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| My Kindle! |
 |
| Me with my gorgeous husband |
My birthday continued on Monday when my best friend came
to visit & brought the most amazing pizzas ever (if you are ever in
Pietermaritzburg you need to try Pizzology – really) & we spent the evening
catching up & just having some much needed girl time together. She means the world to me & has been
there for me through everything. We don’t
get to see each other as often as I would like, but I know she will always be
there for me no matter what.
The week continued in an amazing way, with dinner with
our Connect Group (from the church) ladies on Tuesday; puppy classes on
Wednesday (and my little Lola was so good & is learning so much); a
completely relaxed evening of Grey’s Anatomy on Thursday; & on Friday another surprise visit from Miranda along with some beautiful gifts.
 |
| Yum yum! |
The only grey cloud was news that I received yesterday from
my gynae… All tests for husband &
myself came back perfect – except for one.
I had hormone tests, & the one for Anti-Mullerian Hormone came back
very poor which shows that unfortunately I don’t have many eggs left. The gynae also wants me to have my op as soon
as possible to remove the cysts & check my tubes. They won’t do keyhole surgery because of all
my previous issues & the scar tissue that has formed. She is getting hold of a surgeon & an anaesthetist
that have dealt with someone with MG & will get back to me by early next
week to give me the date of my next op.
I am terrified.
But I know that God has this under control, & that He
doesn’t give me anything that I cannot cope with. I am trusting that this op will be the end of
all my issues, & that by my next birthday I will be celebrating along with
my sproglet!
Thank you to everyone for their messages, love, spoilings
& treats for my birthday – and always.
Thursday, 22 May 2014
15 things NOT to say to someone suffering from MG
I have been wanting to write this for a while, to get it off my chest... I have heard all of these at least once & they have really stung. Some of them I am learning to brush off, but some still make my blood boil. So this is my vent. It is often my responses I wish I had the guts to say to those who have said it to me.
You may think you are being kind or supportive, but know that more often than not we are sensitive & embarrassed by our MG. Words can be very hurtful, & stay within someone's heart for a lot longer than you may realise.
We are all beautiful individuals - some of us are just more "thspecial" than others!
So here it goes...
1. I know EXACTLY what you're going through.
No, I can pretty much guarantee that you don't. You don't know what it's like to battle to get your words out, choke on your own spit or have difficulty getting up off the floor. You may have some understanding through us explaining what we are going through, but you do not know what it is like to live with MG. And everyone who has MG is different, & suffers from varying degrees of symptoms - nobody is the same, so we don't even know what the other snowflakes are feeling!
2. Nobody could ever love you with this disease.
Yes, I have actually had an ex say this to me. It broke me. Still to this day it lies heavy on my heart, & every fight I ever have comes back to these words that were spoken over my life. I often distance myself from others as I would rather not become too close to anyone than lose them (friendship or otherwise) due to the fact that they cannot handle my disease. It is a heavy burden to carry, & try as I might I cannot forget it. Even if you say something like this in the heat of the moment it cannot be taken back. I am so grateful for my wonderful husband, family & friends that have proven that they CAN love me with my MG & will be my pillars of support through the good & the bad. I am truly blessed.
3. You need to be more positive.
This one irks me like you cannot believe! I am a very positive person. I laugh throughout life & always try to see the best in every situation. Yes I was given the short straw with regard to this illness, but if I hadn't gone through everything I have, I wouldn't be the person I am today. But sometimes I do have my down days. Sometimes I will cry for anything. Some days I am sick of being sick. I battle with hearing bad news about my illness or my medicine. But I don't need to hear that I need to be more positive! I try every day to see the good in every situation I find myself in. I try to greet others with a smile, make them laugh & show compassion towards everyone I meet. I would love the same in return! Help lift me up when I am down. Make me laugh. But please don't tell me to be more positive!!!!
4. It's not that bad.
Um... Sometimes it is! Have you lived with this? Have you wondered when things will get better? Have you thought you were in remission, only to end up back in ICU? Have you sat on your bed unable to stand up or brush your hair or pick up your bag? I agree that some days are absolutely fantastic, but when I say I am having a bad day this is probably because it is quite awful! Many of us snowflakes keep smiling & positive for as long as we possibly can, & we are probably dealing with a lot more than you possibly realise. We live with this every day. We try cope with it to the best of our abilities. We don't use it to our advantage or enjoy being sick.
5. You need to get over this.
I would love to! I would love to not have to put 22 tablets down my throat daily. I would love to be able to walk up stairs without having to physically lifting my legs by the time I get to the top. I would love to not slur my words by the end of the day & have people say to me, "Shame are you tired?". We do not put this on! And we would love to be 'normal' like everyone around us.
6. You don't look that sick.
No, probably not. Except for maybe if you see us late at night or if we are really tired, & our eyelids start drooping or we can't smile properly. But MG is a nasty disease that drains all our energy & makes our muscles forget their job. We may not look sick, but we are fighting a constant battle with our own bodies.
7. Just drink water/eat yoghurt if you are battling.
Shame, people who have said this to me have really just been trying to help. They most probably did have my best interests at heart but just did not understand. When you cannot swallow, it means you can't swallow anything - sometimes not even your own spit. I can count many a time where I had to use paper towel/toilet paper to soak up my saliva as I kept choking on it & it was dribbling out onto my chin. So drinking water or eating yoghurt is not going to help the situation - I would probably need more paper towel to clean up the mess if anything! When I am having a good day this is perfectly fine, but when I am battling this is near impossible...
8. You need to get out more.
Walking makes me tired. Working makes me tired. Talking makes me tired. Flip sometimes even putting on a happy face makes me tired! So when I am feeling vrot & weak, the only thing I want to do is climb into my bed & sleep. I wish I could go out more. I wish I could spend more time with my friends & enjoy braais & parties with them. I thrive off other people & their energy. It hurts when people say this to me, as I used to be very outgoing & a real party animal. Now staying up after 10 at home is a big thing! I often have to cancel/postpone plans as I realise my body just can't cope & I cannot take the risk of having another relapse. On my good days I do as much as I can without overexerting myself (my mother may disagree here...) & I always go to bed much happier. I will come out whenever I can. But please understand that my health is my number one priority & cancelling plans hurts me a lot more than it hurts you. Please don't exclude me from everything though - I do feel like I have missed out on a lot with friends due to my MG & this hurts. Perhaps make plans for during the day over a weekend, or on a public holiday. If I can't make it at the last minute, be understanding. Don't fight with me about it!
9. It must be nice to sleep so much & have everyone run around after you.
I have had plenty of people say this to me. Even some of my own family! Some people take advantage of being sick, that is true. They're crazy in my opinion! They almost seem to enjoy it & lap up the attention. I hate it. I hate that my husband has to carry in the groceries for me. I hate that I can't help move the furniture around at work or home. I hate that often over a weekend I have to take an afternoon nap to see me through the day. I feel like I am missing out! I hate having to ask people for help; or even to admit that I cannot do something on my own. It makes me feel inferior & makes me have to acknowledge my illness. I wouldn't sleep so much if I didn't have to, & I would do everything for myself if I could!
10. If you exercised more, you'd get fitter & feel better.
This was taken from Google. So in other words, energy is needed for exercise & exercise uses muscles. Over use of muscles in a person with MG makes them give up. So in other words, exercise actually makes us weaker!!! We can do basic exercises, but only when we are feeling strong & can cope with it. Sometimes walking from the house to the car is enough. I have tried to go to a gym class once before & feel on the ground unable to get up. My muscles had had enough & I suffered for ages afterwards with weakness all over my body.
11. Everyone gets tired.
Yes, everyone does get tired. But tired for you is very different to tired for me. We all cope in varying ways. Myasthenics get tired from a normal day at the office! Realise what it is that our illness does to us before you say such things.
12. You're just having a bad day.
Hmmmmm... Perhaps we are. But probably not. It is probably a normal day for us, but the first time you have noticed us letting our front down unable to keep up the facade any longer. Perhaps we are finally letting you in to see what we live with. Perhaps we are just having an "all fall down" kind of day. You can't really tell us what kind of day we are having though. You don't know the battles we are fighting or what we are coping with on a daily basis. We say we are OK but that may just be because we are too tired to explain how we are really feeling.
13. It's all in your head.
Really? REALLY? You think I would make something like this up? You think I enjoy this? Do you honestly think we would want this? I would not wish this illness onto my worst enemy. But it is very real. It controls my life. It shows me what I can & cannot do. It has built me into the person I am today, but it is most definitely not all in my head! It is not psychosomatic.
14. There are people worse off than you.
Absolutely. I agree. And I pray for those people every day. But when people say this to me, it is said in a condescending way that makes me feel stupid or like I am putting this whole thing on. I am grateful for all I do have in my life & I do not need more negativity coming my way!
15. Maybe if you lost some weight you would feel better.
Grrrrr! This one grates my carrot. Yes, I probably am looking bigger than I did last time you saw me. It is most probably as a result of all the medication I am on. These cause water retention, which in turn causes "moon face". It is not attractive. I hate having pictures taken of myself & seeing how big I look. I am trying so hard to lose weight, but it is not easy. I cannot exercise, & I try to eat what I can - depending on how my swallowing is at that particular moment. But telling anyone, especially a girl, that they need to lose weight is like poking a sleeping bear. Not clever. I would love to lose weight - AND I AM TRYING.
Sorry for this rant - but I needed to get it off my chest. For so long I have simply been accepting what people throw my way. I just want to create awareness for what people say. Watch your words. They can hurt. They can be taken the wrong way, especially when the other person is having a sensitive day. Every day we are fighting a battle. We try so hard to be strong & make it through the day.
Support us.
Love us.
Make us laugh.
Keep us positive.
Give us a hug.
But most of all, try to put yourselves in our shoes.
xxx
You may think you are being kind or supportive, but know that more often than not we are sensitive & embarrassed by our MG. Words can be very hurtful, & stay within someone's heart for a lot longer than you may realise.
We are all beautiful individuals - some of us are just more "thspecial" than others!
So here it goes...
1. I know EXACTLY what you're going through.
No, I can pretty much guarantee that you don't. You don't know what it's like to battle to get your words out, choke on your own spit or have difficulty getting up off the floor. You may have some understanding through us explaining what we are going through, but you do not know what it is like to live with MG. And everyone who has MG is different, & suffers from varying degrees of symptoms - nobody is the same, so we don't even know what the other snowflakes are feeling!
2. Nobody could ever love you with this disease.
Yes, I have actually had an ex say this to me. It broke me. Still to this day it lies heavy on my heart, & every fight I ever have comes back to these words that were spoken over my life. I often distance myself from others as I would rather not become too close to anyone than lose them (friendship or otherwise) due to the fact that they cannot handle my disease. It is a heavy burden to carry, & try as I might I cannot forget it. Even if you say something like this in the heat of the moment it cannot be taken back. I am so grateful for my wonderful husband, family & friends that have proven that they CAN love me with my MG & will be my pillars of support through the good & the bad. I am truly blessed.
3. You need to be more positive.
This one irks me like you cannot believe! I am a very positive person. I laugh throughout life & always try to see the best in every situation. Yes I was given the short straw with regard to this illness, but if I hadn't gone through everything I have, I wouldn't be the person I am today. But sometimes I do have my down days. Sometimes I will cry for anything. Some days I am sick of being sick. I battle with hearing bad news about my illness or my medicine. But I don't need to hear that I need to be more positive! I try every day to see the good in every situation I find myself in. I try to greet others with a smile, make them laugh & show compassion towards everyone I meet. I would love the same in return! Help lift me up when I am down. Make me laugh. But please don't tell me to be more positive!!!!
4. It's not that bad.
Um... Sometimes it is! Have you lived with this? Have you wondered when things will get better? Have you thought you were in remission, only to end up back in ICU? Have you sat on your bed unable to stand up or brush your hair or pick up your bag? I agree that some days are absolutely fantastic, but when I say I am having a bad day this is probably because it is quite awful! Many of us snowflakes keep smiling & positive for as long as we possibly can, & we are probably dealing with a lot more than you possibly realise. We live with this every day. We try cope with it to the best of our abilities. We don't use it to our advantage or enjoy being sick.
5. You need to get over this.
I would love to! I would love to not have to put 22 tablets down my throat daily. I would love to be able to walk up stairs without having to physically lifting my legs by the time I get to the top. I would love to not slur my words by the end of the day & have people say to me, "Shame are you tired?". We do not put this on! And we would love to be 'normal' like everyone around us.
6. You don't look that sick.
No, probably not. Except for maybe if you see us late at night or if we are really tired, & our eyelids start drooping or we can't smile properly. But MG is a nasty disease that drains all our energy & makes our muscles forget their job. We may not look sick, but we are fighting a constant battle with our own bodies.
7. Just drink water/eat yoghurt if you are battling.
Shame, people who have said this to me have really just been trying to help. They most probably did have my best interests at heart but just did not understand. When you cannot swallow, it means you can't swallow anything - sometimes not even your own spit. I can count many a time where I had to use paper towel/toilet paper to soak up my saliva as I kept choking on it & it was dribbling out onto my chin. So drinking water or eating yoghurt is not going to help the situation - I would probably need more paper towel to clean up the mess if anything! When I am having a good day this is perfectly fine, but when I am battling this is near impossible...
8. You need to get out more.
Walking makes me tired. Working makes me tired. Talking makes me tired. Flip sometimes even putting on a happy face makes me tired! So when I am feeling vrot & weak, the only thing I want to do is climb into my bed & sleep. I wish I could go out more. I wish I could spend more time with my friends & enjoy braais & parties with them. I thrive off other people & their energy. It hurts when people say this to me, as I used to be very outgoing & a real party animal. Now staying up after 10 at home is a big thing! I often have to cancel/postpone plans as I realise my body just can't cope & I cannot take the risk of having another relapse. On my good days I do as much as I can without overexerting myself (my mother may disagree here...) & I always go to bed much happier. I will come out whenever I can. But please understand that my health is my number one priority & cancelling plans hurts me a lot more than it hurts you. Please don't exclude me from everything though - I do feel like I have missed out on a lot with friends due to my MG & this hurts. Perhaps make plans for during the day over a weekend, or on a public holiday. If I can't make it at the last minute, be understanding. Don't fight with me about it!
9. It must be nice to sleep so much & have everyone run around after you.
I have had plenty of people say this to me. Even some of my own family! Some people take advantage of being sick, that is true. They're crazy in my opinion! They almost seem to enjoy it & lap up the attention. I hate it. I hate that my husband has to carry in the groceries for me. I hate that I can't help move the furniture around at work or home. I hate that often over a weekend I have to take an afternoon nap to see me through the day. I feel like I am missing out! I hate having to ask people for help; or even to admit that I cannot do something on my own. It makes me feel inferior & makes me have to acknowledge my illness. I wouldn't sleep so much if I didn't have to, & I would do everything for myself if I could!
10. If you exercised more, you'd get fitter & feel better.
exercise
ˈɛksəsʌɪz/
11. Everyone gets tired.
Yes, everyone does get tired. But tired for you is very different to tired for me. We all cope in varying ways. Myasthenics get tired from a normal day at the office! Realise what it is that our illness does to us before you say such things.
12. You're just having a bad day.
Hmmmmm... Perhaps we are. But probably not. It is probably a normal day for us, but the first time you have noticed us letting our front down unable to keep up the facade any longer. Perhaps we are finally letting you in to see what we live with. Perhaps we are just having an "all fall down" kind of day. You can't really tell us what kind of day we are having though. You don't know the battles we are fighting or what we are coping with on a daily basis. We say we are OK but that may just be because we are too tired to explain how we are really feeling.
13. It's all in your head.
Really? REALLY? You think I would make something like this up? You think I enjoy this? Do you honestly think we would want this? I would not wish this illness onto my worst enemy. But it is very real. It controls my life. It shows me what I can & cannot do. It has built me into the person I am today, but it is most definitely not all in my head! It is not psychosomatic.
14. There are people worse off than you.
Absolutely. I agree. And I pray for those people every day. But when people say this to me, it is said in a condescending way that makes me feel stupid or like I am putting this whole thing on. I am grateful for all I do have in my life & I do not need more negativity coming my way!
15. Maybe if you lost some weight you would feel better.
Grrrrr! This one grates my carrot. Yes, I probably am looking bigger than I did last time you saw me. It is most probably as a result of all the medication I am on. These cause water retention, which in turn causes "moon face". It is not attractive. I hate having pictures taken of myself & seeing how big I look. I am trying so hard to lose weight, but it is not easy. I cannot exercise, & I try to eat what I can - depending on how my swallowing is at that particular moment. But telling anyone, especially a girl, that they need to lose weight is like poking a sleeping bear. Not clever. I would love to lose weight - AND I AM TRYING.
Sorry for this rant - but I needed to get it off my chest. For so long I have simply been accepting what people throw my way. I just want to create awareness for what people say. Watch your words. They can hurt. They can be taken the wrong way, especially when the other person is having a sensitive day. Every day we are fighting a battle. We try so hard to be strong & make it through the day.
Support us.
Love us.
Make us laugh.
Keep us positive.
Give us a hug.
But most of all, try to put yourselves in our shoes.
xxx
Monday, 5 May 2014
Cysts & the sort
So today I went to the Gynaecologist...
Yes, that doctor that strikes fear into every woman that I know. Why anyone would CHOOSE to go to one is beyond me, but it is a necessity & I am lucky to have found one that is just wonderful & keeps me laughing throughout everything.
I have had bad luck with doctors (especially gynaes) & the issues that come with them...
I have had ovarian cysts, pain, botched operations (that ended up with my bowel being nicked, me getting septicemia & ending up on a ventilator in a medically induced coma...) & all sorts of "fun" tests. So as you can guess, I was NOT looking forward to this appointment at all. But with all my meds, & the fact that I haven't fallen pregnant yet, I thought it best to go to one & get everything checked out to make sure I am working correctly.
I tried a gynae closer to home that many of my friends had recommended & she was wonderful! She put me at ease straight away, although after I had told her all my medical issues (Myasthenia Gravis; medications I am on; history of operations; history of ovarian cysts), she laughingly told me I am proving to be a problem patient already!
We went through to her other room, I changed into the gown & lay on the bed with husband sitting next to me. Already I was freaking out, & she hadn't even started anything yet. We put through the usual prodding, poking, squeezing & all that nonsense; & then she started with the proper examination.
Straight away I could see that something was wrong. By looking at the screen I could see a lot of dark blobs, & tiny "bubbles" on my right ovary. Yip, the cysts are back - with a vengeance. The main cyst is huge - enormous actually. She tried measuring it from all different angles & said it was one of the biggest cysts she has seen. She said surgery is probable, & while they are in there they will test my tubes to see if they have been damaged by my previous surgeries, or if they are just blocked. I also had to go for a blood test - one as a fertility-type test (have to go for another one on day 3 of my period) & another to make sure the cysts aren't cancerous. She is concerned at the size of it & would rather be safe than sorry. Results will be back with her soon & I will go back in a month to decide where we go from here. Oh, & she said it looks like I have developed endometriosis on top of this. All of these factors have impacted on me not falling pregnant.
I feel completely drained. I had to try so hard to hold myself together whilst in her room, but when I got back I just broke down. Why me? I would love to go to the doctor & just have one of them say, "Wow! You are in perfect health! Why don't you just go home & have a huge chocolate ice cream?". I wish. Right now I am terrified. I know God doesn't give you what you can't handle, but sometimes I feel like I can't be tested or pushed much more.
But I am thinking positively - maybe once they do the op, they can clear my tubes & we can make mini-me's! Wouldn't that be fantastic? So please keep us in your prayers. My next appointment is in a month, & from there I will probably have to go see a fertility specialist ($$$$$$$$$$$) & take things from there.
Love, light, sunshine & happy thoughts coming to each of you.
Thank you xxx
Yes, that doctor that strikes fear into every woman that I know. Why anyone would CHOOSE to go to one is beyond me, but it is a necessity & I am lucky to have found one that is just wonderful & keeps me laughing throughout everything.
I have had bad luck with doctors (especially gynaes) & the issues that come with them...
I have had ovarian cysts, pain, botched operations (that ended up with my bowel being nicked, me getting septicemia & ending up on a ventilator in a medically induced coma...) & all sorts of "fun" tests. So as you can guess, I was NOT looking forward to this appointment at all. But with all my meds, & the fact that I haven't fallen pregnant yet, I thought it best to go to one & get everything checked out to make sure I am working correctly.
 |
| Interesting scars from my last operation |
We went through to her other room, I changed into the gown & lay on the bed with husband sitting next to me. Already I was freaking out, & she hadn't even started anything yet. We put through the usual prodding, poking, squeezing & all that nonsense; & then she started with the proper examination.
Straight away I could see that something was wrong. By looking at the screen I could see a lot of dark blobs, & tiny "bubbles" on my right ovary. Yip, the cysts are back - with a vengeance. The main cyst is huge - enormous actually. She tried measuring it from all different angles & said it was one of the biggest cysts she has seen. She said surgery is probable, & while they are in there they will test my tubes to see if they have been damaged by my previous surgeries, or if they are just blocked. I also had to go for a blood test - one as a fertility-type test (have to go for another one on day 3 of my period) & another to make sure the cysts aren't cancerous. She is concerned at the size of it & would rather be safe than sorry. Results will be back with her soon & I will go back in a month to decide where we go from here. Oh, & she said it looks like I have developed endometriosis on top of this. All of these factors have impacted on me not falling pregnant.
I feel completely drained. I had to try so hard to hold myself together whilst in her room, but when I got back I just broke down. Why me? I would love to go to the doctor & just have one of them say, "Wow! You are in perfect health! Why don't you just go home & have a huge chocolate ice cream?". I wish. Right now I am terrified. I know God doesn't give you what you can't handle, but sometimes I feel like I can't be tested or pushed much more.
But I am thinking positively - maybe once they do the op, they can clear my tubes & we can make mini-me's! Wouldn't that be fantastic? So please keep us in your prayers. My next appointment is in a month, & from there I will probably have to go see a fertility specialist ($$$$$$$$$$$) & take things from there.
Love, light, sunshine & happy thoughts coming to each of you.
Thank you xxx
Sunday, 20 April 2014
M.I.A.
I do apologise... I haven't been around for a while. Life seems to have been on fast forward, with hardly any time to just sit down & relax. Work has been hectic with month end reconciliations & trying to make sure we get out statements in time. I have been working & getting home to just BLOB in front of my tv with my new puppy cuddled on my lap. Thank goodness my husband is so understanding & gets home from a very busy day to cook us dinner & take care of me!
My MG seems to be under control lately - I know I am not getting any worse, even if I am not quite 'normal' just yet. My facial muscles are 'melting' by the end of the day (best way I can think if to describe it - they seem to have met their match with gravity & don't want to lift up to smile or anything) & I do slur my words slightly; but I am not feeling as weak throughout my body & I can still cope with what is happening. I have learnt to take things easy & am not pushing myself as much as I was previously. No more late nights, no more going out after work to all sorts of places, no more hectic weekends going to visit 10 different people, no more thinking I am superwoman. I have learnt my limits (thanks MG) & now have to stick within them. I often feel like a boring old lady, but I have realised that my health is more important than a late night! Friends & family are very understanding; & we make plans for convenient times. They are also understanding if I cancel plans at the last minute - I definitely don't mean to but sometimes my body tells me I cannot carry on!
I went for a check-up with my neurologist on Thursday. She is happy with my progress after my last visit (a month ago, where my medicine was increased from 4 tablets a day to 40! Shake, rattle & roll baby...) & said we could try decrease my prednisone. I was so relieved to hear this as I am beginning to look like the Oros Man - gotta love the side effects of cortisone, which include an increase in appetite (and yes, its bad. I will eat anything that is not nailed down. I am hungry THE WHOLE TIME. I will finish supper & start looking for my next snack. It's bad.); increase in water retention (hence the "moon-face" I have developed); insomnia (I will be EXHAUSTED, but not able to fall asleep. Or I will fall asleep, but wake up every hour. Yuck.); increase in facial hair (anyone wanting to grow a moustache? Go onto cortisone & one will sprout out of nowhere... It's fantastic. Thanks medicine - I have always wanted to look like a man!!); & thin skin (I bruise from bumping into the door! People must think I live with a wife beater. Let me tell you now that this is most definitely not the case! My husband is the most gentle, loving, amazing man in the world. I am just a clumsy oaf! It also means that I should not have a wax as it can remove my skin, as well as cause terrible bruising. But I do it. I have the best beauty therapist ever. You should try them.) Anyways, back to my medicine... I was so relieved to have the drop in my cortisone. We are going to see how I cope during this next month, & at my next check-up reevaluate & perhaps stop it completely (when I am better), or have to increase it again (if it happens that my body is not coping on the lower dose).
The other medicine I am on is CellCept. This is not a pleasant pill.
This pill is deciding for us that we cannot start a family until it is stopped. I am the reason that we cannot have kids. Growing up when people asked me what I wanted to be when I was big, my answer would always be the same - a mum. This may be due to the fact that my mum is the most amazing, strong woman; but a huge part of it is also that I love kids & I can't wait to have my own little family. It is not worth even risking falling pregnant. There is a 70% increase in the chance of miscarriage, & it is almost guaranteed there will be birth defects. I have heard that you cannot even breastfeed whilst on CellCept! This has been the biggest blow to me ever. I have shed many tears, & often cannot face the world with this on my mind. My neuro has suggested we look into surrogacy or adoption - I don't even know where to begin. Also how to you ask someone to be a surrogate? "Sorry, would you mind carrying our child for 9 months, coping with morning sickness & more stretch marks, feeling it moving & growing inside you, & then handing it over to us quite happily?" Also I want to be pregnant! I want to feel my child moving & growing. I want to go through morning sickness. I want to experience pregnancy for myself, & not just through stories told by other women. I know this may sound selfish of me, but it is my dream. I would love to adopt a little baby, but I still want a child that is a mini-us.
And lately it seems like everyone around me is pregnant or just had a baby. I am thrilled for them - especially one special couple that has had a really rough time last year. All these people deserve kids & I am so happy that they get to be parents. But I have to admit that this little green monster still comes out & I shed a few tears every time I hear of another one. Maybe it is because I know we can't have kids right now that I notice it more, but wowzers, it is not easy! Also people keep asking us when we are going to have kids. Once you are in a relationship, there seems to be questions with the rest of your life; i.e. "When are you getting engaged?", then goes to "When are you getting married?", which ends up at "When are you having kids?". How do I explain to others that I have a potentially life-threatening illness & am on chronic medication that hinders my ability to have kids? Do I say it just like that & shock them into silence? Or do I try give a long explanation? Or do I lie & say we want to wait until we're a bit older? People don't necessarily realise how much their questions can hurt. I know they don't mean them to, but more often than not people who don't have kids haven't had them for a reason.
Now, it is just a matter of getting better so I can go off the medicine again. A professor of neurology that my doctor has been consulting with says he wants me on CellCept for life. This is shocking news. And I don't want to believe it. I will not believe it. God has a bigger & better plan for us. We cannot see it right now, & don't understand the reasoning behind having to go through this. But one day we will look back & understand - hopefully!
Thank you for all your understanding & patience with me through this difficult time. And thank you for not asking me when we are going to have children of our own - when it happens believe me I will be shouting it from the rooftops & celebrating every day.
Much love & happiness to all of you xxx
 |
| Lola - my precious pup |
I went for a check-up with my neurologist on Thursday. She is happy with my progress after my last visit (a month ago, where my medicine was increased from 4 tablets a day to 40! Shake, rattle & roll baby...) & said we could try decrease my prednisone. I was so relieved to hear this as I am beginning to look like the Oros Man - gotta love the side effects of cortisone, which include an increase in appetite (and yes, its bad. I will eat anything that is not nailed down. I am hungry THE WHOLE TIME. I will finish supper & start looking for my next snack. It's bad.); increase in water retention (hence the "moon-face" I have developed); insomnia (I will be EXHAUSTED, but not able to fall asleep. Or I will fall asleep, but wake up every hour. Yuck.); increase in facial hair (anyone wanting to grow a moustache? Go onto cortisone & one will sprout out of nowhere... It's fantastic. Thanks medicine - I have always wanted to look like a man!!); & thin skin (I bruise from bumping into the door! People must think I live with a wife beater. Let me tell you now that this is most definitely not the case! My husband is the most gentle, loving, amazing man in the world. I am just a clumsy oaf! It also means that I should not have a wax as it can remove my skin, as well as cause terrible bruising. But I do it. I have the best beauty therapist ever. You should try them.) Anyways, back to my medicine... I was so relieved to have the drop in my cortisone. We are going to see how I cope during this next month, & at my next check-up reevaluate & perhaps stop it completely (when I am better), or have to increase it again (if it happens that my body is not coping on the lower dose).
The other medicine I am on is CellCept. This is not a pleasant pill.
 |
| Me with my grandpa when I was little |
Now, it is just a matter of getting better so I can go off the medicine again. A professor of neurology that my doctor has been consulting with says he wants me on CellCept for life. This is shocking news. And I don't want to believe it. I will not believe it. God has a bigger & better plan for us. We cannot see it right now, & don't understand the reasoning behind having to go through this. But one day we will look back & understand - hopefully!
Thank you for all your understanding & patience with me through this difficult time. And thank you for not asking me when we are going to have children of our own - when it happens believe me I will be shouting it from the rooftops & celebrating every day.
Much love & happiness to all of you xxx
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