My Story as I Recover - April to July 2014
As the 'real' me emerges from the mist I'm confronted by a new problem, loss of confidence. The severity of the withdrawal symptoms have left me fearful of going out and facing the world alone. I feel like a different person and someone I don't
really know. I was on the benzos a very, very long time. My pre Benzo self lived in the 1970s, I was in my late twenties and I'm now nearing seventy. It's difficult to appreciate how much those lost years have affected me. Any personal development, learning
and experiences during the interim years may well have been influenced by the drugs. It's impossible to ever know what I would have been like without them.
I have to concentrate more on who I was during the last few years prior to jumping rather than how much I may have lost since the 1970s. I was certainly confident in spite of the anxiety episodes and many minor physical problems. I could drive long distances and created a busy, happy life, although retired, with good friendships. I was a member of various organisations as well as being a voluntary visitor for the elderly housebound. All this I have to retrieve as I find my feet.
I also feel I should throw out all my clothes and start again. They're part of the old me and I want a fresh beginning. I'll wait awhile and see what unfolds over the next few months before making major decisions. Even moving house is a difficult change that needs to be made. My present house is too large for the two of us as we get older and also holds memories of my nights pacing the floor in and out of rooms as well as unimaginable suffering. I don't want these reminders.
Finally, as the major withdrawal symptoms lift I'm finding the smaller stuff is coming to the fore. Things that were niggling have become chronic and frustrating. I'm thinking mostly of my disturbed nights as I continue to wake approximately every hour then waking around 3.30 a.m and staying awake until morning, the low back pain that's stabs away incessantly, the irritating itch, the general feeling of weakness and debility and the mist that shrouds my brain. But, how much better to be complaining of the minor ills when the severe acute periods have eased and hopefully left for good. I must always look on the bright side of life!
Today I’m continuing in a window and the fresh air is blowing away any previous waves. It feels good and even the dense fog within my head has lifted. It’s a calm day and it’s been over a week of good days now. This doesn’t mean symptoms have entirely disappeared more that they are grumbling along in the background without forcing their presence. I feel more motivated and energetic. These sorts of days help me to believe in healing and that one day I will be symptom free and living a fully functional life again. Perhaps it’s not that far off.
It is difficult to know when and how full recovery is going happen. Some say the worst symptoms just dwindle away over a period of time, perhaps years in a few cases. Others say they have woken one morning to find themselves entirely symptom free and able to start living again. Still others say the windows stay open longer while the waves become fewer and further between until they disappear completely.
I rather feel my progress is more along the lines of a combination of the dwindling symptoms and a lengthening of the windows. I have had good and bad days throughout the last 17 months although, over a period of time, I’ve also noticed that every five or six months I’ve entered a long and horrendous wave. This happened at my third month, my ninth month and then at my sixteenth month. These Tsunami type waves have lasted six to eight weeks before I’ve returned to a calm window, often much improved over the previous one. In other words there always seems to be a storm before the calm. I then return to the milder waving in and out on a daily basis but this baseline has been raised and is less intense. A complicated process that’s difficult to explain. Whatever happens it’s all healing.
It really is amazing how quickly things can change. One minute I may be despairing of ever being well again, imagining all sorts of illnesses that must have created the havoc within me almost to the point of arranging my funeral . The next I’m feeling well and looking towards all I’m going to do in the future and almost symptom free. It’s no wonder others, including doctors, cannot fathom the complexity of the process and are all to ready to label us with one of those ‘obscure’ illnesses that have no identifiable cause. I’m thinking of Chronic Fatigue Syndrome, Fibromyalgia (I’m supposed to have had both of these), a Generalized Anxiety Disorder (also had this), Depression, Post Traumatic Stress Syndrome and so forth. The list is long and in our society there seems be a need to label anything that can’t be explained rationally or cured quickly. This is a cause for concern in education where children are labeled with a variety of diagnoses for not learning successfully such as Dyslexia, Attention Deficit Disorder and Hyperactivity. Even more worrying when these children are given psychiatric drugs from a young age to dampen their behaviour.
So, for now I hope that my recovery is well underway however it may unfold. I’m certainly happier and more positive for seeing the disappearance and easing of some of the more intense symptoms at long last.
I’ve been submerged in a catastrophic wave that sapped all my energy and took my sleep. Today I have surfaced and feel relatively calm and normal with no pain. This is the pattern and has to be accepted and surrendered to until full recovery is mine. I’m now 17 months and one week away from my last benzo. It’s been a long hard journey but I’m still breathing and I’m still alive, my new mantra!
Over this time I’ve learnt to take pleasure in the small things in life. Just to wake in the morning to another day, the beautiful view from my home on the hillside, the wagging tail of my devoted dog and so on. Such small details become the very essence of life when you are unable to join the hustle and bustle of the outside world. I shall never disregard their importance again.
At present the anxiety level is low and my brain is clearer. They have been talking on Benzobuddies about whether life is too short to embrace withdrawal and perhaps those of us suffering should have remained on the drugs for the rest of our lives. It has helped me to gather together my own reasons for quitting suddenly when I did and thought it may help to list them here …….
- I was suffering ‘tolerance’ or ‘relative’ withdrawal for several years preceding my jump. I understand this as my brain having become used to the drug and needing more and more to remain at status quo. The symptoms I suffered when in tolerance were as bad as the symptoms I suffered over this last 17 months. The only way to quell them would have been to updose and take more Nitrazepam although I didn’t know this at the time so never did take more than the prescribed dose.
- The threat of possible dementia hangs over anyone taking long term benzodiazepines especially those who are over 65. I was then 67 and very aware my cognitive functions were severely compromised.
- I was unable to live my life to the full due to the over reaction of my Central Nervous System. I could be plunged into episodes of chronic stomach problems, shaking, sweating, and weakness for very minor reasons. Once I appreciated the cause of this I knew I wanted to be fully functional again and without this threat constantly hanging over me.
- I had night sweats every night for forty years which I always thought were caused by the early, enforced menopause. I now know they were probably exaggerated by the disruption of the brain by the drugs. The proof is that these have been one of the symptoms to ease and almost disappear since my temperature control has regulated. I am expecting them to go completely with more healing.
- More than anything I wanted to show my family, my sons and my grandchildren that I wasn’t the sick, elderly lady that I had become. That I wasn’t the rather erratic mother that I had been and that my husband could enjoy the happy, confident wife he had married again. Perhaps this is rather ‘pie in the sky’ but I can dream.
- I had many, many physical problems which I won’t list here. They all became worse in tolerance and withdrawal. They now mostly only appear if a bad wave threatens. My theory is that things get worse before they get better and this is just an example of the brain trying to heal each nasty symptom once and for all.
There are probably other reasons that have faded from my memory but these represent the most predominant. I feel thankful I recognized so many problems for what they were and through research and talking to many experts on the subject have been able to take the long road to recovery before, hopefully, I’m too old. It’s not been easy but I’m surviving.
Before I leave today I would like to mention the launching of a site called www.cepuk.org which is being used in the UK to inform parliament of the dangers of all benzodiazepine drugs as well as antidepressants. To a certain extent I’m disappointed with its emphasis on antidepressants rather than benzos which have been in use since the sixties and are being prescribed by a medical community that still has its head in the sand. This is a major scandal and it’s inevitable that anti depressants would cause similar, horrendous withdrawals with their targeting of the same brain pathways. I only hope it goes part way towards heaving the GPs out of their entrenched position of prescribing drugs rather than seeking the cause and helping their patients deal with depression without threatening their very lives! In their support the short time of each consultation, perhaps only five or ten minutes, gives them little space for ‘talk’ and understanding and so they resort to the ‘quick fix’ that could become this life threat. I understand Prescription medications are the third most common cause of death in the UK. Doctors need to go beyond seeing their patients as a collection of symptoms to be treated to seeing them as 'whole people' with life problems that need sorting.
This is a post I made on Benzobuddies today which relates to the various diagnoses I've had from doctors over the years.....
Over my years of Benzo use I've been diagnosed with so many different illnesses that I now realise are highly likely
to have been the benzos......lupus, third stage kidney failure, IBS, a degenerative disc in my spine, Hypertension, CFS, Fibromyalgia, psoriasis, rheumatoid arthritis, generalised anxiety disorder, depression, post traumatic stress syndrome, leaky heart valve
and I'm sure many more that I've forgotten. I'm still alive in spite of all this and improving slowly. I don't have Meniere's on the list but I have had chronic ear problems in the form of infections, rushing and some ringing in the ears.
It remains to be seen if I'm left with any of these once withdrawal clears. Somehow I doubt it.
While in withdrawal I have had blood tests for various other problems that could be the cause of such intense symptoms. All the results were negative and so I was left with it all being down to an underlying anxiety problem caused by my early, near death experience in childbirth. Doctors attempt to find anything else apart from their prescriptions to make sense of what is happening to us. Luckily I know my body and have now read sufficiently to have a some understanding of what I am suffering. Also, a good friend alongside me in all this is a GP herself! She has a much better and more reflectve view of the whole process due to suffering herself. She despairs of her profession. For some reason doctors want to believe their text books and drug company hype not the patients themselves. I know I am a reasonably intelligent woman who used to have a brain but I have been made to feel I'm an anxious, neurotic wreck! Believe me I most definitely am not and as days go by I get stronger and more determined to educate and help others in this. It's been happening ever since the mid seventies and must be acknowledged and centres set up to help those wanting to withdraw from their drugs.
Today I am reasonable. I did have a mild wave for the last two days but this has not degenerated into the intensity of previous waves. I am hoping my baseline is improving and it will never be as bad again.
The wave left at 5 pm yesterday. I woke from a toxic, afternoon's sleep around 4pm suffering intense symptoms and not knowing who or where I was. An hour later I was well. No anxiety apart from mild flutterings in my stomach. I was calm and able to pass a normal evening with my husband.
This pattern of windows and waves can be wearing. There's no way of telling when the bad times will strike. Their onset may be signaled by rumblings in my stomach, heat, palpitations and intense anxiety. They do not frighten me but the constant, intrusive thoughts are annoying. They take away the belief that this is healing and my brain is readjusting to a drug free exisistence. If I can understand this process then why is it that doctors are so blinkered? I am horrifed by the lack of education shown in this by many in the medical profession. My GABA receptors are trying their hardest to come back on line while my amygdala is seeking to find what is real and what is not. (The amygdala is a small almond-shaped structure in the limbic system that is linked to emotions and aggression. It functions to control fear responses, the secretion of hormones, arousal and the formation of emotional memories). Eventually the lack of evidence to support an appoaching tiger allows it to calm down and set me free. Unfortunately while my brain comes to grips with reality it crashes about looking for the truth. This is healing and it may happen many times again before I fully recover.
Briefly to clarify waves and windows......waves = periods of time when symptoms are at their most severe while windows = periods when everything eases up and you can feel almost normal. Faith is needed at all times that eventually windows will get longer and longer while waves will slowly disappear.
Today I am well and will walk and tidy the house ready for my family to visit for the next week. I am fine.