This is my life - as I see it.
Diagnosed in 2004 when I was only 15, I fight the battle against Myasthenia Gravis every. single. day.
I write from my heart; keep it real; & try to create awareness in every way possible!
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 had made 2 cakes the night before (no electricity until
11:30 so I only started baking then! I
had tried to mix the batter by candlelight thinking our electricity would be
back on soon, then eventually went to bed.
I was up baking when the light came on until about 1:30am for 2 cakes
& a batch of cupcakes to take to my neuro & family) & had them iced
& ready just in time for work. The
one was a bit of a flop, but I think they forgave me for that in light of the
fact that Eskom was not my cooperating.
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!
Always a wonderful thing to get good news on your
birthday! She is so happy with my
progress that she has stopped my cortisone (YAY! No more moon face or chubby cheeks!!) &
only wants to see me in about 6 months – or when I am pregnant. We are looking into alternatives to CellCept
now as well as the side effects for my unborn child are just awful. We are praying so hard, & have so many
people praying for our miracle child to come into our lives. I believe it will happen, but better to go
off the CellCept (read: poison) sooner rather than later. I have been off it for 4 days now & am
feeling fine – don’t feel like I am slipping back or being “thspecial” at
all. Very excited!
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.
My Kindle!
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!
Me with my gorgeous husband
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.
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.
Yum yum!
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.
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.
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.
exercise
ˈɛksəsʌɪz/
noun
activity requiring physical effort, carried out to sustain or improve health and fitness.
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.
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
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.
