5 year update - TRIGGER WARNING FOR SENSITIVE FOLKS

 

Tapered Jan - Mar 2013, 6 month time lag, bedridden Sept 2013, then suffered hell and torture for several years, unable to leave my bed for the most part.  Nerve pain, head pressure, brain squeezes, light and sound sensitivity, unable to process text and speech, only saw visitors maybe once or twice a month for a couple of hours.  Slept a lot. Memory atrocious, unaware of passage of time, depersonalisation and derealisation.

 

No problems with food or supplements, no anxiety. 

 

Communication disrupted between brain and body, limited use of legs and arms, unable to move neck, shoulders, spine very rigid. Bleeding at back of left eye, sight damaged (I believe related to benzo withdrawal).  Early last year, jolts to back and front of brain restored some of the communication between brain and body.  Suddenly could feel all the sensations coming up my legs from my feet which meant I could not put my feet on a hard surface for several months without my legs going rigid.  Gradually acclimatised again.

 

So over the last few months, spine, legs, neck, shoulders etc loosening up and feeling more normal.  Still cannot stand or walk for very long so require walking frame or wheelchair outdoors.  Still in bed much of the time but feeling so very much better.  Cognition is improving greatly - short term memory, longer term memory also.  Trying to read a book, a few pages only, have not been able to do that since 2013.  Spatial awareness still impaired, brain does not seem to process external surroundings at either side. 

 

So although I am still disabled and unable to participate in outside life, I am very busy campaigning online every day to raise awareness re prescribed drug dependence, withdrawal and iatrogenic harm.  I now have a home help who takes me to the supermarket once a week and I get out for a coffee with friends some weeks.  Have even made it  to a shop to buy new shoes, I generally order everything online.  I have a mobile hairdresser now which is much easier than trying to get to a salon.

 

I hope that over the next year, I will continue to improve and still have hopes of being able to stand for longer and walk a bit further than I can do right now.  I also hope to be able to read again .. for pleasure even if only a little bit at a time.  I can write by hand again, something that was very difficult until recently.  Last year I was able to do some swimming and that is something I would like to try again as I found it helpful. 

 

I have adapted to my situation and look forward to some better days ahead and maybe spending more time out of bed and hopefully out of the house as well.

 

Life sure is a funny old business and I could never have imagined this would be my retirement but we have to make the best of things and try to adapt to our circumstances if they are not quite what we had hoped for.  I can laugh, enjoy company, chat on the phone, read a little, watch TV a little, listen to music a little, enjoy my meals, sleep well etc etc etc  ... I am not unhappy.

 

Best wishes to all

 

Fiona 

 

 

Fiona, five years is a huge milestone for sure, it’s really hard to fathom the depth and extent of damage from these medications, I’m so sorry for your suffering. I am simply in awe of your strength of spirit and coping skills. Much respect and admiration for the way you've carried yourself with such dignity and grace through an experience that’s unimaginable.

 

You have been tirelessly campaigning on all our behalf for prescribing changes and awareness of iatrogenic injury in the UK. Thank you for all your hard work, this is simply a tragedy of epic proportions, too too  many lives are turned into utter turmoil by these medicines. Wishing you all the best and most of all for continued healing.

 

ps. On a lighter note thanks for introducing me to grumpy cat and the animal antics. 

 

 

Thank you so much, Saga, I am very touched by your very kind response.  Unlike many folks here, I knew about the damaging effects of benzodiazepines many decades ago, although I really had no idea of the widespread destruction of people's lives.  But I believed I had to keep taking Nitrazepam for myoclonic epilepsy and of course I had become dependent so withdrawal did not seem like a realistic proposition as I tried to earn a living.  What has happened to me as a result of withdrawal is very unusual, I know of no one who has been affected in the way that I have. I am of course bereft that I cannot have any semblance of a normal life any more .. I was at the eye clinic yesterday and when I go out it hits me smack in the face how unwell I really am, at home, sitting in bed, I feel quite comfortable and quite positive.  However, a year ago I could not attend medical appointments on my own, I was too ill, I could not absorb what was being said and what I did absorb I would almost immediately forget.  Now I can attend on my own and although I still struggle with absorbing speech I manage to cope.  I can enjoy chatting to the taxi drivers and the other folks in the waiting room.  I can enjoy a cup of coffee.  And of course at these appointments you see many other patients in very poor health also.

 

And then of course I come home to the antics of Grumpy Cat and co who inhabit my blog ...  :D

 

Life isn't all bad.  :D :D

 

Do take care, and I wish you all the best for better days to come ... as I wish for all of us.

 

Fiona 

 

Wow. Amazing, story Fiona.

 

I am blessed to read this and hear it. Thanks.

Hey Fiona!

 

I am so sorry that you have suffered with these unusual, debilitating symptoms    It sounds like you haverecently had slight improvements...This is GREAT news! I am glad to hear this! Gives everyone suffering some hope. Our brains do have a remarkable way of healing.

 

You are such a warrior. Accepting & making peace with these challenges that benzos cause takes a great deal of inner strength.

 

All of the a online advocacy you do is commendable...keep up the good work my friend! 

 

 

Grumpy cat rocks...  Glad you shared your story! 

Thank you so much, azalea and Bella Amis.  I wish you both continued healing also.

 

Fiona 

 

 

Aw, Fiona, I wrote you a whole long post and just lost the whole thing!!!  Maddening!  So now I have to start afresh, am sooo ticked off!

 

I was smiling reading your update, I cannot believe it's been five years already for you.  From our wild/crazy days as mere young 'uns on the CCC thread (*BEST* thread everrrr, by the way) to still slogging it out on a daily basis, who'd have thunk?  Soooo much admiration and respect for you, my friend, at how you've managed to carry yourself so consistently with such unflappable calm, dignity, compassion, and humor.  Plus, being a great voice of reason on BB.  I was smiling reading of all your improvements, through this topsy turvy tumultuous journey, so small in the grand scheme of things and yet so enormous in light of the magnitude of this whole disastrous calamity.

 

And am so happy you've been able to channel your angst, grief, and disappointments into campaigning so passionately for such a vitally important cause.  I can only imagine how gratifying it must feel that you're slowly but surely beginning to see the fruits of your labor.

 

Wishing you more and more better days and only good things ahead for you, and I do hope you manage to get some swimming in this summer.

 

I am sorry you had to post twice.  Thank you so much, we sure did have some fun on that thread, I still do have fun on my blog ... the family of critters has expanded considerably, I can tell you ..

 

I am sorry you are still slogging on as well ...  I hope eventually it will become much easier.

 

Going to the pool was supposed to be "me time" .. but you know ...  I can never seem to escape ..

 

http://media1.s-nbcnews.com/j/MSNBC/Components/Photo/_new/tdy-110627-swim-cat-1-12p.grid-8x2.jpg

 

Take care

 

Fiona 

 

 

 

 

Abcd: Thanks for the nice clip! I love animal programs, especially orangutans. They are so intelligent, and incredible. I see some similarities to the one swimming around the pool, it just has to be me!