Groundhog Day

Urrrg Monday morning  7am alarm clock, get up, shower,dressed,breakfast then rush out of the door, to fight the early morning rush hour to work 8 maybe 9 hours in a boring job.

This is the day after day living for most of the world. Home, food, television, bed, ready to start the day over again and again. Groundhog day



For me and the rest of the chronically sick we have a different sort of groundhog day.

Now this isn't to start a pity party or a woe is me tale,  I can only tell you mine, and it may be the same or vastly different to yours but ......

It  usually starts around 3 am, that's if I have slept at all that night, sometimes I only wake up a few times before 3.
That's when the pain starts a dull aching nagging pain, which I toss and turn trying to ignore as I really don't want to wake my hubby up, he has such a long day ahead.

You see most of us with a chronic illness would rather keep quiet than to make life difficult or harder for our loved ones.
This is not being a martyr.  

We just would rather think about you than ourselves, and are so desperate to be "normal", that we will hide and cover our illness just to fool and distract ourselves by caring for you .

I manage to cope half dreaming half day dreaming for a few hours until the 5.30,/6.00am alarm goes off.

This is when I can stretch my really sore legs and arms, take a couple of pills , on some days a few more.

I kiss goodbye to my hubby as he rushes out on his way to fight the morning rush hour, hmmm now I need to sleep,
 "you have had all fooking night to sleep and you choose now great"
this is my morning grunt to myself.

If I haven't got an appointment,  I usually give in to my body and drift off to sleep again.

BIG mistake... huge!

Which I am usually lulled into making again and again. because every time I do this, I wake up in more pain, feel sick and have a headache.

 Don't get me wrong I have these anyway but to nap again, wow its 10 fold .

So my day begins regardless of an appointment or not. I gently sit up not moving more than I need to. and reach into my drawer for my medication case.

The  reason my pills are in my drawer are because for some reason, it makes me feel better not letting anyone see the amount of pills I take so I hide them like a pill addict.
I wont even take them in front of you because it will remind you I am sick.

 I get my medicine case, . It has all the days of the week on and am and pm, which along with a dressing gown and slippers, I got for Christmas

When I received this particular gift I hated it, again it reminded me I`m sick and it was like something old people use because they cant remember what they had for dinner.

Wake up call I can't remember what I had for dinner most days not to mention if Iv taken my morning pills.
So with great reluctance it is hidden away like my shopping trolley, used but never to be seen by my hubby.

 I now actually find the pill case is my godsend, even though sometimes I take my pills, refill the case, then can't remember if I've taken them because I have refilled it !!!

After taking pills, I then make my way to the bathroom.

Even though I`m lucky and have an on suit, it feels like walking miles in tin armor that is in dire need of oiling clunk clunk clunk.

 Once I have taken half an hour putting my slouchy clothes on, with so much ooohh and haaa noises, that I have to keep the bathroom window closed..... as the neighbors will think we have very noisy sex every morning....

second thoughts keep it open they may be impressed......



I then clunk my way to the kettle morning coffee hmmm......








I then spend sometime on the laptop procrastinating taking a shower,
For anyone with a chronic illness you will know that this is probably the most exhausting part of the day.

God bless Johnston facial wipes and dry shampoo for my bad days, the chronic illness survival pack must contain at least these two items.

After this exhausting event I then get breakfast, how much depends on how sick I feel.

 The decider then comes whether I can face shopping or whether I txt my hubby to pick it up on the way home.

Most days I decide to make the trek to the shops, and we all know how difficult that is, so I wont bore you with that saga again ( The Light keeper).

Again this isn't martyr ism, it is me just like most chronically ill folk,  pretending be a normal house wife/husband, a lifestyle choice, a choice that involves my best friend and hubby, going to work whilst I did the day to day chores.

Now before all the feminists yell and scream, I said I pretend, because the reality is I want to work, be a normal functioning partner that is an equal money earner.
Not to be able to be this or a " normal housewife" either is hard.

So as I say most days I push to do the shopping, on bad I make the call or txt.

The rest of my day will consist of, me doing my blog or page, or bad bad days laying napping in bed.
I then greet my hubby, ask how his day was, and like all of us down play how bad mine was.

Have tea ,which with any luck wont involve a brain fog induced visit from the fire brigade. However if this happens too frequently ..... maybe its just a perk

Watch television go to bed, ready to start the day over and over again. same ground hog just different day

 This is to give you a little insight into my day as a chronically sick person. So if you are sick it may be similar and it may give you some reassurance you're not alone.

 If you're a loved one of someone who is chronically ill, maybe it will just give you little insight into our day.

Me, a mirror and a parallel universe

Sat in a doctors waiting room, palms sweating, stomach churning and a friend or loved on comforting you, " It will be OK , I`m sure its nothing just routine"

Most of us have been there at some point in our lives, either as the patient or the comforter.

We as humans are programed to fear the the worst in these situations. Fear the doctor Will reveal the test was positive , you have such and such and that they will need to operate as soon as possible.

But what happens when you are fearing the doctor wont give you bad news????

This is the feeling I had sat waiting to see my cardiologist.

To sit there praying that he will say he has found something, and that he will have to organise surgery is a very scary place to be , it makes you question you're mental state, still does.

Does this mean I have some other disorder?

Munchausen??       OMG! 

Ok I`m going to backtrack and explain why I came to this very dark and odd place.

The last visit I had to my Cardiologist I was very proactive in my approach.

I went in armed with information on my unusual heart, I told him about my chats with other TGA survivors,who had undergone procedures that had helped them feel a lot better, given them a better quality of life.

My Doctor Disney assured me he did have a plan, the next thing was to look more closely at my leaky valves with a view to replacing them.

So in the last two months......

I have had all the tests that they arranged, talked to my friends, my kids and my hubby and somehow convinced myself, that when I saw him, Disney, that he will have the " magic pill" that came in the form of an operation.

Then just like all conventional illnesses, it would cure me, make me feel human again,give me back my energy, my life.

                                              ( well maybe not quite this)

So here I am sat with my friend, whom I am so grateful to.also, between you and me she not only came to give me some moral support but to get a look at the infamous Dr cutie whom she definitely thought was hot!!! 

" Jo " my name was called and off I proceeded into his office, as I sat there I tried to focus on his words, "fluid restrictions", another "Medication" to try, 

 "Not sufficient leakage to warrant the risk of surgery"

There it was, those three words "not sufficient leakage", my hopes of a magic pill dashed in 3 words. 

I felt the tears welling up as I sat there, listening to him explaining that my heart was still weak but not enough to warrant all my symptoms, neither he thought was Fibromyalgia, so he was going to chat to colleagues see which was the best specialist to see.

 A ray of light at the end of the tunnel, but all I could silently cry was, your not going to help me are you? ? ., I need you to help me.

As I thanked him and walked toward my friend the tears started to flow, 

I just couldn't believe how empty, devastated I felt over what the whole of society would think was good news, 

I felt like now no one would believe me, where was I supposed to go from here my last grip on hope gone.

I am very lucky for my friend really gets it for a Muggle ( healthy one) and the bits she doesn't she tries too.

And the last things I thought was OMG I wasted spoons putting on mascara and curling my hair for my Disney appointment!!! Devastated!!!!!!!!!!!

Anyway the days have gone by and like any newly diagnosed I once again scrolled through the Internet looking for a life raft to cling on to , still battling with myself for wanting what I thought were terrible things to happen,

 I also in my dispar  wondered if i did find a magic pill what would happen then?,  

Would I know how to live as a Muggle anymore ????

Walking down the street on my way to the shop, which I had procrastinated about for hours, like we the chronically sick do, as it takes so many spoons just to get ready 

If you are not familiar with why we, the chronically sick have an obsession about spoons, then you must read ..

http://www.butyoudontlooksick.com/…/writt…/the-spoon-theory/

I started to remember  a convo I had with my Muggle friend about their experience with cancer, and how they felt going through the tests and having to wait, 

Then I got to thinking about how muggles feel when they receive bad news and that their reactions and thoughts must be

Almost a mirror image of mine a parallel universe.

 ( sorry SiFi geek) except their good news was your bad news, vi ca versa .

Lost, confused, scared not knowing what going to happen, only they get an end result good or bad, 

As for this side of the mirror we hang in constant limbo with no ending.

Anger , denial, sadness, loss, acceptance both felt in each world.

So now I don't feel so bad, my feelings are not wrong.

 I have no disorder. 

I just live on the opposite side of the mirror

 In the parallel  universe.