February to April 2015
I’ve looked back over my posts of the last year and been reflecting on my journey and its outcomes. It’s certainly been a much longer one than I anticipated over two years ago. I really expected to be one of the lucky ones who would be done by six months. That was a fool’s paradise, which stretched to one year, then eighteen months and then two years!! Now, at 29 months free I can see the light and know I’m finally reaching my destination. A few symptoms linger but they are nothing to the ramping up of acute at 24 months that needed all my powers of belief and acceptance to survive for nearly three months.
I know how much sufferers want to hear what problems I encountered and at which months but I think its essential to emphasize that everyone’s journey is different. There are no two withdrawal patterns exactly the same and no two Benzo stories exactly alike. Some had many other drugs, such as antidepressants, thrown into the mix by uneducated doctors, while others suffered hospilisation and subsequent rapid withdrawal again due to uneducated medical staff. We all have a different genetic coding so vary in how we respond to drugs anyway. Age may play a small part as may sex and time on the drugs. There are many variables but the only one, indisputable fact, is that everybody heals in their own time.
I’ve come through periods of intense pain, panic, unbearable anxiety, temperature fluctuations, suicidal thoughts, brain fog, cognitive impairment, fear, supplement, food and drug intolerances, total insomnia for days on end and many bizarre nerve problems but I’ve survived. It’s only the belief that I’m going to be ok eventually and that my body and brain are strong and doing their best to recover that has carried me through. I travelled with HOPE beside me and I’ve never let it go.
Sadly I have lost friends along the way but this is something I’ve had to come to terms with. It’s the total ignorance of the population (through no fault of their own) that causes others to disbelieve our suffering and want to apply the labels used by their trusted doctors. They can’t fathom an Iatrogenic illness produced by prescription drugs and in many cases don’t even want to. It causes the foundation of their lives to be swept from beneath them. I can understand this but feel sorry for the terrible lack of human understanding due to withdrawal problems going unrecognized. It’s not even withdrawal from Benzos alone as antidepressants, pain killers and many other drugs have withdrawal syndromes of their own. I forgive those that cannot contemplate all this and truly hope their own lives may never be blighted by such turmoil.
I will continue to blog here until my life takes over again and I can fully participate with benzo withdrawal far in the past. The only help I’ve received throughout all this is from the forums and the many friends I’ve made on line. Also through the support sites, information and books that have been set up and written by former sufferers. I’m indebted to them as many never had the support from the internet that exists today. I can't imagine going through this alone. I am now looking at ways in which I can help further and perhaps write a book of my own. Any ideas on what’s needed to help fellow sufferers out there in the UK would be gratefully received.
My next posts will continue in Recovery Blog 5
As I move along the road to full recovery I’m wondering just what I’m going to be left with after all this plays itself out. Certainly, already I’m not the same person that I was for so many years on the drug. I’m much calmer and feel at peace within myself. Some days I think I could scale mountains and experience the exhilaration of reaching the summit while on others I want to curl up in bed and let the world pass me by as I drift into a restful slumber. I suppose I'm still facing the extremes of healing but I am so much better and any anomalies in the recovery pattern are mostly positive and my brain reasserting itself. When I’m tired I’m very tired and when I’m awake I’m wide awake and wanting to fulfill myself in all sorts of ways. I think eventually this pattern will smooth itself out and my feelings and emotions will settle. I’m still very excited at the prospect of being well after so long. The world is my oyster!
I’ve read that many people after experiencing withdrawal from benzodiazepines are better than they’ve ever been in their lives. They are so much stronger and more compassionate. They are far more tolerant of others and let very little upset them. They have a love of life and enjoy the moment rather than constantly seeking more…….more money, more holidays, more possessions etc. I’ve learnt to be grateful for what I have and to not seek an elusive goal to satisfy the criteria of others. I have a wonderful family, I have health and a loving marriage and have no desire to travel to faraway places on expensive holidays or the need to buy unnecessary possessions just because I can. I feel at peace in my own skin at long, long last.
We are all going to be so much stronger for this suffering from benzos and their withdrawal effects. In some ways its intensity and the very fact that there was nothing to help the terrible onslaught of symptoms can only benefit how we face our lives in future years. It has shown me who my real friends are, who has true compassion not just superficiality, and what is really important in my life. It has strengthened my marriage, my love for my family, there for me whatever and made me many new, interesting friends all over the world. What else could leave such a wonderful legacy. As you know I believe that positivity is the only way forwards but I am also aware that one of the main and saddest gifts of this ordeal will be an ongoing distrust of the medical profession and prescription drugs. It has made us all aware that we cannot accept the word of doctors and that everything we are prescribed must be researched before we approve any diagnosis or drug. This can only be good. We’re no longer candidates for labels of mental illnesses created by man himself or for drugs invented to make profit for an industry seeking to validate these labels. We are free!
There’s a lot more to be said on this subject and I may add to it as time goes on and my own healing continues to happen. I expect many of you will have your own views especially as your recovery gets underway.
I wrote on Recognising Recovery nearly a year ago but I got it wrong that time! I certainly wasn't ready to recover and only hope I am now.
How on earth do we do this, recognise recovery? I'm sure I’m recovering but also I’m aware it could just be another window. Many times, throughout this Blog and over the year I’ve been posting here, I’ve believed or hoped the window I was experiencing was actually recovery but, every time the window has slammed shut and I’ve suffered another bad wave of anxiety and its accompanying symptoms lasting weeks or months.
This time it does feel different but I'm reserving judgement for a few more weeks before I announce those ecstatic words, 'I'm Recovered'. I'm over 28 months off benzos with about three years of bad tolerance withdrawal preceding my discontinuation of the drug and forty years of occasional panic and anxiety attacks caused, I now realise, by following doctors' orders that I must take sleeping tablets. My full story can be read in Journey to Benzoland and Tolerance Tales.
I have just experienced another bad wave and a sleepless night of full on anxiety, panic and restlessness. I believe it was caused by overdoing things while away for a few days. I walked in the sunshine and forgot about withdrawal and pacing! Never a good thing to do. This wave lasted one day and has disappeared again leaving me pain free, energy filled and clear headed. I believe the waves continue to happen as we recover but they are themselves fragile and quickly give way to a further upgrading of our bodies as they disappear into oblivion. Nevertheless in this wave I was screaming for help as we all do and refused to recognize its transient nature.
I am constantly saying what a weird process we are having to endure but it is just that. It seems recovery may be heralded by an upsurge of symptoms followed by a further window but as time goes on waves become wider and wider apart and less and less intense, lasting just a few hours or days. I’m hoping this is my pattern but I’m all too aware of those that have believed themselves recovered only to return to benzoland, six months later, due to an upsurge of symptoms. We obviously remain fragile for awhile after all this and must never get complacent.
I would love to hear from others who have recovered and how it happened for them. I will ask on the Facebook site as I think it’s something we need to be aware of as time goes by and we think we’ll never get there. I’m over 28 months out and so much better in so many ways.
I've learnt that you can go on long after you think you can't, perhaps this is the biggest lesson of all throughout the withdrawal experience.
I’ve now set up a Facebook Group called Beating Benzos which is linked to this website. Its primary objective is to provide hope and positive messages for those still in the throws of tapering or who have already stopped their benzo drug.
There are several groups on Facebook that give support for those in benzodiazepine withdrawal but mostly they discuss symptoms and seek assurance that what sufferers are experiencing is normal. That’s fine but I feel a more positive group is needed that provides evidence that we do heal and gives links to posts and articles that prove this. It’s all to easy to be negative and bemoan our lot but we do need to see that out of all this suffering comes healing and a return to normal life. I know just how hard it is to lose sight of recovery.
If you would like to join us and take part in the discussions that arise from the topics posted by members please just take a look. It may be that your partners or other family members and friends may like to join as well to give you support and ask questions. I look forward to meeting you there. The group is closed and completely private. Please log into Facebook here with your account and request permission to join. Any problems contact me at firstname.lastname@example.org.
Today I want to write about how brave we all are to keep on going through this with little encouragement to show we really are recovering. The symptoms can be so relentless and just as bad two years off the prescription drugs as they were two weeks off. It’s very very demoralizing and hard to accept that everything will get better in spite of the intensity of the symptoms and little sign of progress.
Anyone who hasn’t endured this process could never understand or possibly empathize with us. They just wouldn’t appreciate how bad it really is and assume it’s all in our minds or we have some other illness. After all how could doctors possibly make us this ill? It’s hard to accept but sadly all too real and one of the terrible outcomes of conventional medicine and its failure to recognize the damage an everyday drug, such as a sleeping tablet, can do. Doctors have buried their heads in the sand for over forty years and seem determined to remain that way. They belong to an arrogant profession that can do so much good yet can also do so much harm to vulnerable people dependent on them. With the Hippocratic oath saying, ‘First, do no harm’, it almost makes a mockery of the prescribing practices happening today. It seems there is nothing that can't be cured without a ‘pill’ in the minds of doctors. Many have suffered from unrecognized tolerance withdrawal and doctors have gone on to prescribe antidepressants, anti psychotics, stimulants, muscle relaxers etc etc. This poly drugging can only lead to even worsening symptoms as the brain struggles to regain normality. It’s all so sad.
As you can see I’m having a rant! Several people have written to me or messaged me over the last few weeks to say how much they are suffering many months or years off the drugs that it has stirred me to want to do more to help them. Until I’m fully recovered there is not a lot I can do except offer advice and compassion through my own experiences.
There can be no doubt that symptoms do get worse before they get better and leave us in peace. I believe I’m well on the way towards my own recovery now. I’ve had a major downturn from months 24 to 27 but since then I’ve been feeling much more positive with just an occasional blip if I forget to pace myself or watch what I eat. I am sleeping most nights in spite of regular wake ups and I’m not resorting to bed during the day. My head is clearer and I’m functioning at a better intellectual level. I do have a return of some pain symptoms but I’m sure they will burn out over the coming weeks as I get stronger. I implore everyone in a major downturn to have faith and know this could well be your final upheaval before recovery happens.
I’ve endured this discomfort before and survived it, and so I can survive it today. I’ve felt these feelings before and sat with them, and so I can sit with them today. I’ve felt like giving in before and held onto hope, and so I can continue to hold on today. I made it through yesterday, and so, I can also make it through today. I can do it. I will do it. I am doing it. I am strong and I am capable. I will not give up.’
(A prayer from the International Acceptance movement)