If I am completely honest, the truth is I am utterly scared of medications. ‘Meds’ scare me because they are the unknown and what they can do can be horrifying, although we hope they are going to be helpful.
In fact we want help so bad that we are willing to jump off the cliff into the unknown in order to reach relief.
In the beginning I believed everything I was told and took everything that I was offered. I trusted that people knew what these meds would do and that it was all a very precise science. A + B = C.
Today I see it more like a casino roulette table. Spin the wheel and hope the odds are in your favour.
You may think that sounds strange until you are here, and then you know it’s mostly accurate.
Today I am going through withdrawal for an anti convulsant drug supposed to help with my absence seizures. It feels like I am in junkie hell!
The drug didn’t work for me; it didn’t reduce my seizures or the effects. So I discontinued it…And then this happened.
Nobody can ever tell you with anything approaching certainty what will happen. We can all be so very different. But suffering is a language that is universal and cold turkey is a term that is highly underrated. Cold turkey evokes images of festive leftovers and snacks. Withdrawal is a completely different place and experience.
My body aches. I have chills. I cant sleep for longer than an hour without waking and hurting. I have deeply disturbing nightmares. I feel completely exhausted ALL the time. I can barely move. Emotionally I am in pain and suffer constant mood swings. Headaches that feel like the universe is screaming…And bowel/bladder problems on top of everything.
And there are no guarantees about how long it is going to last.
The better question might be “how long can I last?!”
Worse than this is the realization that I have been here before. Several times. Different reasons. Different drugs. Similar problems and pains. I feel a little like a painful, tired and broken record.
Withdrawal is an agonizing trip into the unknown.
A horror ride you can’t get off.
When you are given a drug you are never told how hard it is going to be to stop. Ever. Or what will happen when you do. That’s what I find so hard to understand and why I feel so much mistrust and skepticism now.
I truly believe that a thorough discussion of the possible adverse effects and withdrawal experiences would be more complete and helpful.
Autoimmunes have so much to battle that we often feel that anything is worth the risks and side effects. Anything is worth trying to have some kind of former life back.
There are no easy choices in our world but I still think we are owed a complete picture when it comes to our care, medication and treatment.
Over the past ten years I have been through many withdrawal experiences but I can assure you that it doesn’t get any easier.
I am now permanently on some meds because my body will not allow me to stop and the repercussions are life threatening.
The only way I can mentally cope with this period is by researching other people’s experiences and taking comfort in our collective accounts and hardships.
Dr Google allows me to connect with other sufferers and helps me feel less alone. And I am feeling completely alone right now. Like I am drowning.
So for now… I must wait, hope, write, love, hold on tight and never stop hoping that tomorrow will be a little bit better. Just a little.