My list of medication daily is now...
oral morphine-around 20mg/10 ml
tramadol-6/8
morphine tablets-60mg
lyrica-350mg
prozac-40mg and
amitriptyline-30mg.
a year ago i was on
Fentanyl patches
2400mg of lyrica!!!!
and 100mg of amitriptyline which caused a problem called prolactinanemea!! (angry)
Everyday is a struggle, I look a complete fat mess, I cannot walk my children to school and basically just feel like a very shit person.My partner has to work 12 hours then come home and sort the children out and take them to school. No 2 days are the same, there is no pattern, nothing that makes its any better and there have been many times I have considered leaving this world. My children deserve a much better mummy and my partner could be so much happier with an able happy lady.(blush)
I have been sliced, diced,stented,botoxed and electrocuted from the inside while awake. Non of these procedures lasted long if they even worked at all!!
I have been seen by the gastro team, the neurology team, the pain team repeatedly, the team who confirmed the Prolactinanemea and recently was told by the pain team they have no answers for me whatsoever and discharged me into the care of my doctor and when it gets severe A&E department.(shock)
I am so shocked that there are so many of us suffering, and the doctors really don't understand this awful illness nor understand what we unlucky people have to cope with day in day out.
And now to the seizures!! 2 years ago the seizures suddenly started, no warning I had been out walking the dogs (the pain wasn't at its worse at this point, I did get an odd hour or two where I could do something normal!) all I remember is leaving the house, crossing the road into the field and then I came round strapped to a board extremely confused and pure panic, There were police and ambulance in my face and I really really freaked out. Luckily a neighbor passing recognized me and ran to get my partner. he ran to me and I can remember clinging to him in absolute fear, begging him to take me home, it was only then I realized I was covered in blood and wet through.
I got a copy of the police report a week or so later and it seems a man just about to round the corner had slowed down to let me cross the road but I just dropped, smashed my head open on an old church wall and then dropped and had a full blown tonic-clonic seizure. To say I was lucky is an understatement! I was literally in the blind curve of the road and a double decker bus would have been using that route every 10 minutes! Thank god for that man stopping in time. (shock)
Because it was my first seizure ever the doctors thought it might just be a one off but from then on I was getting them every 4-5 days!! I was petrified of being alone, leaving the house and dying during a seizure, I was a mess. Then suddenly they stopped again!! I would have episodes of absent seizures and get very shaky but not develop the full seizure. Except now I have been very very stressed with debt etc and they have started again, however this time they are different, I am having absent seizures where I just sort of freeze and switch off for 20 minutes, I'm told I garble some strange words before and then just completely tune out! Couple of weeks ago I was doing some B&M shopping with the family, I was fine all I remember is forgetting something at the till so went back to get it, next memory is coming too in a crowd of people, sat on a chair gripping a handful of bags very tightly. My little girl was crying and I blamed her sister for being mean, for me its basically like someone paused me and then I switch back on and carry on where I left off!! My partner was on the phone to the ambulance crew, the staff were crowded round me trying to stop people staring! I just sort of looked at them, stood up from the chair and started packing shopping! I really was oblivious to what had just happened!! apparently I had stood rubbing carrier backs and muttering and then started violently shaking. they had sat me on a chair just in case I dropped.
I also have started having seizures but I'm conscious!! I can feel myself sort of being sucked into a hole, pretty much like when you faint, I will then make a loud urgh sort of noise and then all my muscles freeze up and then I start shaking where my muscles are contracting and releasing very quickly, its agony and the fact I'm awake baffles and scares me.
Back at the start they did all the neurology tests and said it wasn't photo sensative epilepsy and have now concluded it is non epiletic stress disorder seizures!!
sorry this is such a long post, it feels good to get my feelings and thoughts out there.
Claire xx
p.s-does anyone claim DLA benefit or PIP benefit because of this awful illness? I was on DLA for 3 years but have now being refused PIP, How I am financially going to cope I don't know, that money mainly goes on transport for me getting to appointments etc. (sad)