Limbo

It's been a rough year. So many seizures in Jan. & Feb. that I ended up in hospital 4 times, 3 in the ICU, chest infections.  Then went to the dentist for dental work and had more seizures, poor Bob scared the living daylights out of him and his staff.  Then because of that trip I did damage to the right knee so then had to have surgery in April and as I'm coming out of the general anesthetic I start doing the funky chicken again.  Had 3 I think in recovery, 2 in post op which is when they sent me to the emerg because the nurses didn't have the staff & equipment to handle the situation.  So then you think things are going good, and that fucking cloak drops on me and it is so heavy, the heaviest it has ever been.  I wake up crying and go to bed crying.  My poor husband doesn't know what to say or do so he does nothing.  My son tries to help by telling me to exercise, walk, meditate.  All my friends are so tired of hearing my problems that they start telling me to take walks, and have you tried the medical marijuana.  I'm so tired of hearing that line.


The thing is, I started having seizures when I was 8 1/2 yrs of age, and was told because they were such severe ones that I wouldn't live to my teens, then our family doctor wanted me committed to a Mental Hospital in Sudbury.  Back in the 50's, 60's & even the 70's it was believed that if you took seizures without having had a head injury of sorts then you must be mentally retarted or had Down Syndrome.  Although some would argue this point, I am not Mentally Handicapped as it is referred to today nor do I have Down Syndrome.  I am just an unlucky person with parents that both are caring the gene and  so I now have the diagnosis of "Genetic Generalized Epileptic with Grand Mal Cluster Seizures".


So I continued to have seizures all thru my teens, was told to never marry and definitely not have children.  So I did both and after the birth of my oldest son I didn't have another seizure for 18yrs.


Then one day, December 31st, 1992 to be exact we were visiting friends in town and it began to rain and then quickly turned to freezing rain.  So we headed home and within a minute my life changed forever.  We hit black ice and did 3-360's, flipped up on our rear wheels and then went end over end into the ditch landing on the roof of the car.  This left us hanging from our seat belts and my husband undid his and then mine.  He panicked and got out and I couldn't move from the severe pain.  Then a yr later in November had another MVA and suffered whip lash.  Three weeks later the seizures returned with a vengeance.  I sunk into a deep, deep depression.


Once I got to a London University Hospital and saw a specialist that deals only in seizure disorders things started to happen.  I hadn't taken medicine for all those yrs and now I was on all kinds of pills, some for Reflux & Ulcers, some for pain, some for depression and of course 3 different pills for seizures. 


It was after all this that I found out that with Epilepsy comes depression, and with the pills that control epilepsy comes side effects 1- depression 2-diarehea 3- fatigue 4- weight gain.  Oh joy is me, and I have all 4.  It's the depressions that is ruining my life now not the seizures, this flippin cloak is so heavy some days that it's hard to think of anything other than death.  After all I'm 60, my kids are growing and from what I've learned over the yrs is that life moves on no matter what.  Look at 911 in the States, the death of my nephew, my mother, my father and so on and so on.


So I go back to see my counsellor but he can only see me for 6 wks, because it is a Government funded agency and it is called a crisis centre.  So in all this time from January of this yr till now my Dr. takes me off the Dilantin that I have been taking for 20+ yrs and puts me on Keppra, Lamictal, Primidone and 2 anti depressants.  But they take me off the dilantin  to quickly and that G.D. Cloak has become so tight and it is like being a Mummy it is wrapped around me so tight.  So thoughts of suicide start to enter my mind again and then I start having seizures again.  Within a wk, I've had at least 50 seizures, so there I go back to London University Hospital to see the specialist again.


While I'm talking to him, I turn to look at my husband and start to shake uncontrollably and then I have a seizure right in front of the dr.  It takes him about 5 mins to get me to respond and he tells me that they are not Grand Mal seizures but Suedo Seizures, but to be sure he sends me over to have an EEG.  While having the test in fact I think it was near the end of the test I had another seizure.  Again it was a suedo seizure.  He brings me out of it and he tells my husband that I have no control, I am not bringing them on, it is my bodies way of handling the stress & depression I am under.  When they tell me, I start crying all over again and think why would I do this to myself.  They are so hard on me, I loose memory, I usually hurt myself somehow but he repeats that I do not have control it is my bodies defence against the pain of depression.  I'm sorry but Fuck, I don't know what hurts me more knowing that they are not Grand Mal and only suedo seizures. 


So here I am in Limbo until I get off the Dilantin totally.  I'm in Limbo until the new dose of anti-depressant kicks in.  And I'm in Limbo because although I would love to end it all I can't I promised my sons, husband and my counsellor yet don't think for a minute that as long as this damn CLOAK hangs around my shoulder Limbo is my life. 


I'm tired and am going to bed, my hubby is on midnights this wkend and this is another thing that depresses me, he should have retired over a yr ago but he can't because of my medical costs. LIMBO!!


night all Moe

Advice from a Pro

My counsellor wants me to post my journals as he feels it will not only help Epileptics but those who suffer from depression.  I hope it does because without the love & support of my sons, my councellor, my friends and my wonderful husband ( and my housekeeper who I can't live without) my suicidal thoughts would be more than just thoughts.  It is because of the meds, that cause those thoughts, it is because of the Epilepsy that causes most of my depression that paired with the rejection of most of my siblings.  It would be easy for me to do this, for lord knows I have enough drugs in my house that I would slip away without no one knowing.  But it is because of my boys, my husband, my coucellor and my computer tech (who suffers from the cloak too) that I get thru days. 


So don't give up, my nephew died before Christmas and I saw how it effected everyone and it made me realize that although life moves on whether your in it or not, your purpose in life is to live.  Much like the wedding vows that people take "For better or worse"  Love to all of you and this has become my other purpose, I hope someone out there reads these post and I hope I give you some peace in that we are not alone.  Moe aka "Maureen"

My Cloak is so Heavy Today!

Well since my last post I've had over 60 seizures, lost 1 bra, 2 sweaters, 2 tops and 1 pair of shorts.  At this rate Pennington's is going to join the billion dollar club.  Went up there today and spent 200.00 dollars in less than 15 mins.  Oh well in retrospect I've gained 3 hospital gowns, 1 housecoat and one of their warm flannel blankets.  I've used the ambulance service so much in the last 6wks that I think I'll invest in a good used one for my own personal use that way it won't cost me as much.  It's a good job I don't remember all the shit that goes on once I've started having the seizure and I usually lose a day or 2  after too.  The thing that comes with the damn seizures is a giant size cloak.  Hell I'm barely out of bed in the morning when it drops on my shoulders.  Yesterday for instance I cried non stop, my poor husband just went on and did the laundry, put the dishes away, cleaned the kitchen and made supper as if this was a daily routine for him.  I feel so very sorry for him, yet I don't think I could love anyone not even my parents as I do him.  He holds me, kisses me, doesn't ask for anything just does what needs to be done and then says with a little grin "I did say for better or worse".   He always says that he can't imagine what I've gone thru after and during a seizure and if doing all these little jobs makes it easier for me then so be it.

I saw my counsellor today and he made me feel so much better.  He always tells me what I need to hear yet never lets me forget the times I should think twice or undo what I've done.  You can undo what you've done but you can never ever undo the words you say, for they linger like the cloak and there is always some measure of truth in the words you've spoken. 

The last time at the hospital when I went into the seizures at the emerg the nurse told me I started screaming for my mom.  They couldn't get an IV started so they gave me the Ativan thru my nose.  She then said when the seizure was done that I curled into a fetal position and cried softly.  I can't figure out why I called for her when it is my husband who I always look for after.  I have to think about this for awhile, my mom was always embarrassed by my seizures and you were not to talk about them outside the family circle.  Hell half the time I wasn't even allowed to talked then.  I know seeing me in a seizure is dreadful and back when I started having them it was believed that only brain injured people suffered from them or mentally retarded people had them.  Please no disrespect but that is what was told to me & my parents.  I fought hard my whole life to make sure that people didn't think I was stupid.  In fact I still do.

I can remember when I was a little girl and we were at Sick Kids Hosp. in Toronto and I was having my very first EEG, that gives them a reading of the electrical activity in the brain.  They would put 27 needles into my skull and it would take about an hour or so, because if one wasn't in just the right spot they would have to take it out and redo it.  I was crying after about the 6th needle because it hurt so bad, my mom asked the tech if she could give us a minute, so he left.  Mom then slapped the back of my head and said if your going to cry I'll give you something to cry about.  When the tech came back in he had a sucker, cherry I think and he told me it would help with the pain.  It did in that it took my mind off what was going on and I never cried again and I always got a sucker from the tech. I'm very tired and think I will lay down, no one has read my last post and I don't suppose anyone will read this one.  But it is helping me.

My Cloak of Horror

Well it is Saturday, July 11th, and I'm in a horrible panic attack.  I have a toothache, and the cloak that I carry is hanging heavy.  My husband is going to the car races in Barrie today and I want him to go so badly because he has been on 2 wks holiday and he has done anything other than take me to London for my specialist appointment.  Whoopee!!  But I believe that is the reason I'm so panicky is because he is going where I can't reach him.  We don't have cell phones and I don't want one and either does he.

He has become my rock, he is about the only one, no that's not true.  My youngest son can calm me too.  Greg can undo the buttons on my cloak, he does it many ways.  Kindness, physical touch, or just being around and knowing that if I need him he is within yelling distance.  I'm a selfish bitch because I can go out and do a lot to play cards and that seems to be okay and I now know why, it is because I know where he is, not within yelling distance but he is at home waiting for me.

How do I get over this dependency I'm not sure for it is not good for me or him.  But writing this down helps for it lets me see that within my selfishness I see that only what I want counts.  Not fair to all around me, because if I do it to him I must be doing it to my friends. Another silly thing, no not silly but self destructive thing I've done is chew & tear at my cuticles till they are in such pain and are bleeding.

So you see the cloak has more powers than you can imagine, from panic attacks to literally eating yourself to cause such pain and bleeding.  God I wish you would help me thru this so that when I die, I die peacefully and not in such pain that my loved ones around remember the good times I gave them rather than the anguish I caused myself, them and others. 

I'm feeling a little better so I think I will lay down for awhile and maybe when I wake up the cloak will have shrunk.

Love to me and all those who love me & care for me.  Maureen

Stage 2 of my Journey

Well I've had my naop, my son made me the most amazing supper then he went off to North Bay for a concert.  I'm sweaty, but I don't know if it is because of the heat or how I'm feeling.  My heart is still pounding, I'm shaky, want to talk to someone but who do I call.  It's the wkend and everyone is with their families but me.  Isn't that pathetic!  I know what I'm doing wrong but can't change it.  WHY???

How I miss my mom because whenever I was alone she was usually the one I called and talked to.  She sometimes would know there was something was wrong but most of the time I don't think she did.  My mom had her own cloak which she called her blanket of hell. 

I remember when mom went to the psych hospital, she was suppose to be gone only for a wk or 2.  Then they didn't know when she was coming home.  Because of my relationship with my older brother & sisters I was sent to Auntie Vera's till mom got home.  The hell I put her thru was not near what my brother & sister did. Then as my mom got older and dad died, they seem to enjoy her company as long as she was taking them somewhere.  I gotta stop this it is upsetting me more.

Dummy Doing Blog for the very 1st time....

So here I am trying to learn at the ripe old age of 60 learning to use a computer that I've had for 8 yrs.  About time you say.  Hell yes.  Pray for my teacher Sherry as she has no idea the turmoil about to enter her life.  So if you are weak and can't handle all my language or mistakes then start watching Lawrence Welk because he might be more entertaining but I doubt it.