Where Am I Now?

-Healing from a Protracted Withdrawal from Benzodiazepines-

This is written by a sufferer of Benzodiazepine drugs prescribed for sleep over 40 years. Her numerous undiagnosed or wrongly labelled illnesses over all that time and her eventual realisation that she was suffering severe, ongoing tolerance symptoms from her decades of a prescribed medication. She subsequently cold turkeyed and entered a very protracted withdrawal. In spite of this long and difficult journey as well as her age, she has slowly, mostly recovered from the damage she suffered.

Of course that sufferer is me and it’s my story and my slow, barely perceptible recovery as symptoms waxed and waned over several years. I’ve been asked to write this by others in a long recovery from Benzos. Mostly they are concerned about the phrase ‘everybody heals’ in spite of there being little discernible evidence for this amongst the protracted community. I clung on to the phrase in early withdrawal but gradually, as the years went by and I saw so many suffering, even bedridden, there was little hope for my continued belief in this. Far better to research my own ways to cope and get through the bad times rather than wait for some miraculous happening, somewhere in the future, especially at my age which meant maybe I wouldn’t live to see it anyway!

No I am not fully recovered from the experience but I do consider myself very well for my age of 75. I still have some bad nights and I am very susceptible to stress at nearly eight years since my last benzo tablet. However, this is nothing compared to the past years. I know others at my stage and beyond still with symptoms and still finding it hard to believe that they can get better. This is entirely understandable as with no medical support and no understanding out there in the world we only have each other to rely on and keep us going. Doctors want to label this such as anxiety, depression, undiagnosed symptoms, Chronic Fatigue, Fibromyalgia, mental breakdown, you name it and they’ve got a label and, of course a drug for it! Even other members of the benzo communities want to say there must be something else wrong with us and this can’t be withdrawal. They are wrong, for most of us this is definitely still recovery from the damage the drug can cause to body and brain.

I also write this for the education of those who are carers, whether they be friends, families or medical professionals, of anybody in benzo withdrawal especially a protracted withdrawal and perhaps many years after the last dose of their drug. It exists, the symptoms can be just as bad as in early withdrawal and occasionally even worse. Your loved one or your patient may be unable to get out of bed for any length of time due to debilitating pain throughout the body; they may be unable to put together a coherent sentence due to cognitive issues; they may suffer many nights of insomnia due to akathisia (inability to keep still), sweats, cramps and so forth; they may be sensitive to many foods and have to watch their diet and most are unable to tolerate any further drugs or supplements due to severe reactions. The list is endless but it all indicates a disturbance in the brain that has been caused by these drugs and can take many, many years to heal.

I have been there, been disbelieved and tested for numerous other illnesses and spent night after night screaming in terror from pain and from the horror of the nightmares that dominated any sleep I did get. I learnt to trust no doctor and steered well clear to prevent further misdiagnosis and disbelief that this could go on for so long. I just held on to the best of my ability and got through the days in a haze of fog and pain. The lack of knowledge in the real world was frightening and quite scandalous as I saw more and more of the protracted sufferers almost forced to add further drugs. Luckily most are able to avoid that route and realise what is happening to them and that this is continuing to be a healing process.

I am attempting to convey that healing happens but sometimes it can be excruciatingly slow for a few of us. We live each day in hope as symptoms continue in whatever form they have taken for us. I’ve never given up on my healing and I now go for long periods with no symptoms at all. When they do return, mostly because I am under a lot of family stress, they are nowhere near the hell of the first year or two. It does get better so please, all of you suffering a protracted withdrawal keep going through and never lose hope. When you arrive at that final destination and can celebrate please let us have your success story as well. Protracted people more than ever need to be provided with that continued hope for healing.