am in so much pain at the moment, over the last 3 weeks my pain levels have gone through the roof, having episodes each day that feels like i must be dying, its so scary how much this hurts.
i feel absolutely useless at the moment, incapable of doing anything at all , i get into work and sit there most of the day just sobbing quitely to myself, at home im useless around my kids, cant play with them, cant even read them there bedtime story, i have to go and hide somewhere as i really dont want them to see me like this, they know im poorly but i think it would be quite distressing for them to see me in such a state when the pain levels go haywire. they are only 5 + 4 so they dont have much of a grasp that daddy is not like he used to be, they know my face hurts, its all i talk about these days! it seems somedays that all i am is pain, i cant remember who i used to be. just over 12 months now, a few days here and there respite but not at any point have i been completely pain free.
have been on oxcarbazepine since april and at first it seemed to be working and controlling the constant ache/burning grinding pain which is 24/7, it didnt stop it by any stretch but seemed to be reducing it and even the mild shocks of 7/8 were reduced, then 3 weeks ago it just stopped being effective and every minute of every day is a struggle.
am so tired and exhausted all the time. am waiting to hear from neurologist, neurosurgeon and pain management clinic, there is lots in the pipe line but thats no help to me today or tomorrow, i am so grateful for my kids and my wife and that is why i get up every day and fight, sometimes i just dont want to, its not fair on my wife, she gets so distressed to see me in such a state, i cant imagine how hard it must be, i dont know what i would do in her shoes.
if i had an off switch i would go and curl up in a dark corner and just turn me off, i must be faulty, i cant find the manufacturers warranty.
everyone on here must have days like this, i know there is always something to lift you up, i just cant find mine at the moment.
think its partly due to my guilt (i know its not my fault) at seeming like a bad parent (i know im not) but my kids just want me back, i want me back. none of my family, no one unless they have experienced this, can even begin to grasp what we go through, had 2 episodes yesterday and i seem to be right on the edge today, its almost teasing me, a flash of pain every few minutes, just to remind me its there and taunting me.
im scared, tired and very fed up