Thursday, August 02, 2012
should of posted this blog yesturday lo but didnīt have the time so here it is one year late.
exactly a year ago today my life changed and the start of what has been my hardest year yet began.hard both physically and emotionally and it is not over yet.what happened that was the day i had my facial paralise.you know what when it happened i didnīt even notice or feel anything.i we were on holiday in tunisia and visiting my sil and her husband and seeing her new baby for the first time.when suddenly lotfi interupted me speaking to hudia to ask what had happened to my face.i didnīt have a clue what he was talking about.then hudia and shokari started staring as well i went to a mirror and the face that was staring at me wasnīt mine even though it was.it was such a shock.we went to the dr there and they thought it was because of the change of air between germany and tunisia i would have smiled if i could lol as i thought it was such a stupid diagnosis.when i told my sister this she laughed and said i now know where the english saying comes of /donīt pull a face if the wind changes it will stick like that sistzers they are so heartless sometimes.anyway the dr said it should last a few weeks and ordered physio theraphy 3 times a week.what it entailed my face being paralise.at first i thought i was talking normally but it wasnīt coming out to others as i thought i was speaking(that was what made lotfi look at me when i was talking to hudia)i couldnīt drink without it all slipping out of the side of my mouth and making a complete mess.eating forget about itin .the first 4 weeks after this happened i lost 20lbs without even trying.i felt self concious the whole time(still do a bit if i am honest)my face was really ,really slanted.couldnīt close my left eye.still canīt to a certain extent.every time i went to physio theraphy i felt like i had gone 10 rounds with muhammaed ali and was laid up several hours afterwards.as it was also ramadam like it is now and also very hot let just say i didnīt have much holiday spirit.i spent the first two weeks after the paralise only going out of the house to specialist and physio.afeter the two weeks i pulled myself together the bast i could for the kids sake and took them to the beach every day trying to hide myself or my face with my headscarf,a big floppy sun hat and sun glasses.the kids enjoyed it but i just tried to hide the fact how tired i was with all the strain of it all.had constant headaches which i still have and pain or rather a pressure around the eye which i still have.as you all know when i came back home to germany i was sent by my dr for test to see if i had a stroke or not despite my blood thinners.i was also having problems with my left hand and arm and my left leg.which are nearly gone now and had differant reasons for the problems i where having.well the two day in hospital for test turned into 27 days as they found the aneurysma so luck in unluck.after waiting for the drīs to decide which was the least dangerous,to operate or not(i have antiphosphate lipid antio body sydrome which is a blood desease that cause the blood to clot hence the blood thinners)and in my last op 2010 i ended up haveing a cluster of lung embolies so they were worried about operating.after the exploraty op to see how big the aneurysma was they decide dit was too big to leave as it could rupture any moment.so two ops later and two coils in my head(as the aneurysma was even bigger than first seen on the exploratory op that the coil wasnīt big enough. also with problems with the cathertah they left in the artery in my thigh(where they traveld through the vein to the brain)from the exploratry op for the main op.it ruptured the vein in the night causing internal bleeding and alot.of pain.they then had to do a ct of my thigh and stomach at 2am to find out what had happened,they then discovered i had a bleeding cyst on my left kidney.another luck in unluck like finding the aneurysma.this luck in unluck was to continue later on.they also did schock treatment(again very painful)three spinal tapes to rule out barrials (i think that is what it is called)when they were trying to find out why i have the paralise which they too this day have not found out .we know what it isnīt,it isnīt a stroke,it isnīt bells plaurisy, it isnīt bipolar(never knew bipolar caused facial paralise)it isnīt insect bite.as i said luck in unluck continued later when i went for a check up on my aneurysma and the mri showed up a small tumour on my brain which allhamdullah was benign but the three weeks it took the neurologist to decide weather they needed to operate to remove it or not,was again very terrifying.they decided not to remove it so i am now left with the knowledge that i have a tumour in my brain which they will be monitoring to see if there are any changes so they can deal with it as and when there is no other option.when i first heard about the tumour though shocked by the word itself i was in a way relieved thinking they had now found out the reason for the paralise.i was wrong it has nothing to do withthe tumour so we still donīt know why and the dr says we probably never will.well all that weight i lost at the start of the paralise i put back on with the stress following the dianogise of the aneurysma the op etc. and this feeling i had of being ugly and the depression i got when looking in the mirrow etc.i stopped being as active on spark i stopped blogging in fact i went in hiding which i still do to a certain extent but i AM getting better.i still have moments of self loathing and depression like when i wrote my last blog,my eye still isnīt working probably.i still canīt drink out of a water bottle with out some of it dripping out the side of the mouth but i just drink out of a glass because if i drink very carefully it doesnīt spill or not as much.i can eat nearly everything but know it doesnīt look pretty to watch so i try not to eat in public or infront of strangers even in the privacy of my own home.also closing the eye is better than it was but not perfect i still have headaches which in turn make me tired .i still have to use eye drops every hour and the dr has perscribed me another medicine which she hopes will help the nerves and muscles relax around the eye though she admitted she doesnīt know if it will work.the mouth doesnīt slant as much as it did so is not so noticable unless i talk.i can nearly spull my mouth out when i clean my teeth,nearly but takes alot of concentration and i dribble lol.i still canīt blow up balloons for the kids when they want or make sounds like neighing horses like i used to do when reading farm books to the kids.the left cheek and eye area looks swollen often because the lymps are not working probably and i go two times a week still for physio and lymp drainage other than that i guess i am lucky .this has really been a very stressful,teidious year for me and i know i will still have a constant battle every day probably for the rest of my life with eating,drinking headaches etc.also there were times this last year when i even lost hope if i was honest.i wrote all the kids a letter for when they were older just before my op for my aneurysma as i had little hope of coming out of it alive(my nan died of this same operation on the operation table when i was 24)so it tells you how close it was to lfe or death that i even agreed to the operation.i kept the letters i wrote for the kids several months after the op then burnt them.i never even told lotfi i had wrote them didnīt want to worry him any more than he was and knew the hospital would have given them to him if i hadnīt made it.why i am writing all this you are wondering especially as you all know the story already.i guess the fact that it is exactly a year ago that this happened,and even though it has been my hardest by far i still have alot to be grateful for and to celerbrate .the main thing being i am alive.even though since this time last year with loosing the weight and putting it back on i am only 2lbs less than a year ago.but i do see that as a really big success.when you think all of what the year has brought i still lost 2 whole lbs.i have really fought for those 2 lbs and i know i will have to fight and fight hard to loose any other lbs as i still have to fight with my innerer demons and my emotional eating.i have another MRI on monday and on wednesday i see another neurologist my neurologist ie on holiday till end of september and the dr says canīt wait that long.hoping the new tablets i picked up today as the chemist had to order them,and the new neurologist might come up with some answers to ease my headaches and the pressure arond my eye.but in the meantime i am going to be too busy to worry too much.tuesday was the last day of school for the summer holidays and tomorrow is the last day of kinder garten for the holidays.so what with drīs ,specialist,physio and the kids i should have enough to keep going.lol.thanks once again for all your love and support you have given me over this stressful time it is more appreciated than you will probably ever know.love you lots.take care and keep smiling.