July 31, 2014
(at 16 months post taper)
To blog or not to blog, that is the question.
I have not felt the need to start a blog and am not sure how this will go. My days are so much the same that I might not have much to write about and as I am still stuck in bed there is not much happening in my life except what goes on in my head (and my body!!). Maybe it would be best to just leave it there, hidden and private.
Sometimes I think I will go mad with all this enforced isolation. I have been in bed for 10 months now. I was so ill during the first three months that I did not see anyone at all. Since then I usually have visitors about once a week. Apart from a few phone calls, lots of texting and posting on BB, I am on my own. I have not found the isolation a real problem. I enjoy seeing my friends for a couple of hours but my brain is still too woozy for much face to face social interaction. I occasionally feel lonely but that is hardly surprising.
I seem to be very comfortable with my own company nowadays perhaps because I feel more comfortable in my own skin than ever before (benzo withdrawal symptoms excluded). I am 60 years old so it was about time I came to terms with my life, my past and now I can look forward to the future.
August 02, 2014
I had to start my blog on a good day. I can’t mull over my life on a bad day. There are parts of it I avoid thinking about because they were just too awful. I was so deeply depressed and had lost all will to live. Benzo withdrawal has been bad but not as bad as the mental anguish I went through in my 20s.
I am so hoping to find out what I am really like off nitrazepam. There is no evidence that I have depression any more. It would be so wonderful to live the rest of my life free from it but I need to be able to function again to really find my true self. Hope I like what I find.
Life is certainly full of surprises.
August 06, 2014
A sleepy week
Not wakening up until afternoon. It is good really because it means I am not having to endure what is the worst part of the day for me. No feelings of desperation.
Not doing very much at all. Have had spells when I could do a bit more. Oh well, that is how it goes I guess.
Yesterday was the centenary of the outbreak of World War 1. The loss of life was beyond words. We cannot begin to imagine what it must have been like. All those young men, just lads really. They had no idea what they were going to face. Wars carry on all over the world, when will we ever learn. The commemoration on TV included German and British personnel. Very fitting.
The Commonwealth Games in Glasgow are now over but have been hailed a great success which is wonderful. I enjoyed the swimming and the diving. Scotland did well in achieving 50+ medals. Hannah Miley from Inverurie got a gold on the first night.
Back into the Independence debate. Alex Salmond and Alistair Darling were on TV tonight but I forgot about it. I would not have enjoyed it anyway. I know how I am going to vote anyway.
It is good to remember the outside world during this period of enforced isolation.
August 06, 2014
Tragedies and triumphs
I guess we can choose to focus on the tragedies of this world or celebrate the wonderful triumphs. It is the same on a day to day basis. Why think about all the negative things that might happen when we can just as easily think about the positive things. It uses up the same energy.
I wonder if different forms of stimulation help our brain cells to recover. The warmth of a bath, the smell of body lotion, the colours of flowers and fresh fruit, the sound of soothing music, the gentle stimulation of mental activity. Nothing too strenuous. Just gentle stimulation to coax them back to normal functioning. They have endured so much, our poor brain cells, now they need pampering. Such ideas are maybe fanciful but I feel that I am actively doing what I can to get better whilst being stuck in bed most of the time. Forcing my brain to work only backfires and makes me feel really ill, much better to go gently.
It will soon be a year since I ended up in bed. Just another 5 weeks. Somehow it does not feel that long. It is a pity to miss the summer but there will be many more summers for I am ever hopeful that I will recover enough to enjoy life again.
August 06, 2014
Beauty of life
There is so much beauty in life waiting to be appreciated each and every day. We don’t need to seek it out. It is just there, waiting. We don’t have to wait until we are better.
The beauty of nature, the sea, the sky, the birds, the flowers, the people. The sights and sounds of the seasons. A beautiful painting. A haunting piece of music. The sound of children playing. Enjoy these things. They cost nothing yet they lift the spirit. Live for the moment, the here and now. Make each moment count. This is a wonderful thing to learn.
Tomorrow will bring more moments to enjoy, for now just enjoy the moments of today. In the hustle and bustle of life we spend so much time thinking about what we have to do tomorrow, next week, next month, next year, we don’t have time for today. We plan, make schedules, worry, and forget to live, truly live. I hope this is a lesson I will never forget.
August 07, 2014
Awake all night
After 5 days of excessive sleepiness, I have just spent the whole night awake. I should not complain really because I feel better during the night so being awake is not that bad. However, I have run out of things to keep me occupied.
I have done puzzles, listened to music, posted on BB, listened to the radio, news mainly, looked at beautiful paintings, and posted on Facebook. Also made cups of tea and my milk has run out. I would really like to get some sleep now.
Benzo withdrawal sure is hard work. It is like being on a rollercoaster, swinging from one extreme to the other with no happy medium. My brain cells sure are confused. I hope they sort themselves out before too long. I have every sympathy with them though and don’t want to rush them. They have had enough abuse to last a lifetime.
August 11, 2014
A Good Day
Did not sleep much last night but slept from 6.00 a.m. to 2.30 p.m. Friends came just after 3.00 so had a good afternoon chatting and looking at their holiday photos. Discussing conceptual art.
Feeling emotions again which is so lovely. Realised last night I was looking forward to today instead of worrying about whether I would be well enough. It was a thought accompanied by emotions. Felt more emotions today.
August 12, 2014
Good signs
I only slept for 2-3 hours last night but I feel quite good this morning. That only happens occasionally but is no doubt a good sign. There are lots of good signs now and I am in no doubt I will get better. I just need to be patient as it won’t happen quickly.
August 14, 2014
Yesterday was a lost day
Felt awful yesterday and it is just a blur today. Slept most of the night and half the day. Down in the dumps tonight. My back is sore. Hobbling about like a 90 year old. It will soon go away but I could do without it. Have been thinking what if I don’t get better. Well, I would just have to live with it. There is no point in thinking about it really. It changes nothing and only makes me miserable. Far better to have hope and be positive.
Wallowing in misery is no good to anyone. Tomorrow is another day.
August 16, 2014
Crazy Days
Thought I would try to force myself to get out of bed more today. Started by staying up for 15 mins between 9.00 and 10.00. Had a lot of muscle contractions in legs and pelvic area. No let up. Had a bath. Eventually fell asleep. Woke mid-afternoon. Forced myself to do online grocery shopping – sheer necessity. Felt terrible
Gradually started to feel better. Went to sleep about 1.00 a.m. Woke a couple of hours later feeling so good. Compared to this morning, it is sheer bliss. Hopefully in time, things will settle down somewhere in the middle.
It sure is crazy days – from despair to bliss in 24 hours. Definitely not under my control.
August 23, 2014
Posted a dedication
I posted a dedication to my great uncle who died in World War 1, age 22. He died in France & Flanders in 1917. A website has been set up to remember all the services personnel who died, including women. Anyone can post a dedication even for someone they don’t know. It is hard enough thinking about the waste of young lives then but the never ending conflicts round the world just makes me despair of humankind. I don’t suppose it will ever end.
The change in my feelings may be a good sign. The unrealistic optimism during the night has gone. Perhaps I am just experiencing more normal emotions now. I feel angry at times which I haven’t done so far in this process. Also feel a bit lonely which I have not done before. If my emotions are normalising then perhaps the rest of me will follow suit. I preferred the abnormal feelings of optimism. I don’t really believe that second last sentence, just trying to be positive but my heart isn’t in it tonight. Maybe I will feel better tomorrow.
August 24, 2014
Feeling good at night
Slept off and on last night but felt really good physically and mentally when awake. Then back to feeling miserable all day. Friends were due to visit again but I had to ask them to postpone.
As usual, felt better in the evening. This pattern has been going on for some time now and each day I feel I can’t take it any more. Muscles contracting all the time in legs and pelvic area, so exhausting. Then it all stops in the evening and at night. Definitely not within my control. It is always much worse if I don’t sleep properly. If I sleep really well I feel better physically but my brain is much more sluggish so I can’t do things.
I am sure lots of Buddies would be glad to swap their symptoms for mine. I know they are not that bad but my quality of life is so diminished by all this. Acceptance, positive thinking, living in the moment are all very effective tools but sometimes, just sometimes, I need to let off steam and have a good old rant about it all. It sure does help.
Soon be bedtime again. At least I get respite every night from feeling miserable.
August 25, 2014
Awake at nights
I have slept all day, until 5.00 p.m. It takes a couple of hours for my brain to start working in a useful fashion after a deep sleep like that. The evening has been good. No physical symptoms, no emotional angst. I really do appreciate these calm times, listening to soothing music, enjoying lovely paintings and posting on BB. It is not surprising I have no desire to sleep at night.
August 27, 2014
Almost a year in bed
Not such a good day. Not much sleep last night and no sleep today. Had a bath, did puzzles, posted on BB & FB. Tried to read magazine but no use. However, I did get the answer to the Scrambled Word Game – antidisestablishmentarianism – don’t know when I last heard that word!!! When I first joined BB I could not get the simplest anagrams.Progress is being made but it is so very slow.
I can’t believe it is almost September. Almost a year in bed. Who would have thought it. If my brain would function, so too would my body.
August 28, 2014
Keeping a record
I am awake too. My mind is never alert nowadays, just half awake. My body likes sleeping. Has done for 12 months. Yes, a record is good. My memory is bad, really bad.I don’t remember from one day to the next what has happened. I would not know how I had progressed without a written record.
August 29, 2014
A sleepless night
Well, here I am in the middle of the night as usual. Have slept for one hour. I do try to enjoy the nights instead of wishing I was asleep. It makes no odds really when I sleep except for friends who want to visit. I play classical music during the night but not during the day. It makes the two a bit different.
August 30, 2014
New neighbours
My peace and quiet was shattered this morning at 8.30 by drilling and hammering upstairs. Then a couple round about my age came to my door to apologise for the noise. They moved in 4 weeks ago. They seemed nice so that is good. New neighbours. At my worst in the morning.
I can’t lie in bed awake, I have to do something or my mind fills with gloomy thoughts. Why can’t I think happy thoughts ??? It is the withdrawal I suppose.
August 30, 2014
Awake all night
I am enjoying the peacefulness of the night once more, it is 6.30 a.m. so should get off to sleep soon. Someone has to do the night shift. I hope you are sleeping right now. I feel very well but tired, even a bit sleepy. If I put my head down my eyes will waken up, ready for action. I guess my brain is just muddled and firing off the wrong signals and who can blame it. It is amazing that it has the capacity to heal after all these years.
(at 17 months post taper)
September 01, 2014
Wakeful Ruminations
Another sleepless night. I wouldn’t mind if I felt good, but not tonight. Gloomy thoughts swirling inside my head. So much suffering on this forum. Makes me want to weep. I know my gloom and despondency will pass, either tomorrow or the next day. Others do not have that consolation.
Illness wears you down. I should know, it has been my shadow most of my life. I had 10 good years from age 8 to 18. Prior to age 8, I was pretty poorly and surprise, surprise the doctors could not agree on the root cause. Not much has changed in 50 years. Missed a whole term at school in my first year. What a start!!! I was provided with a car to take me to and from school on health grounds. It was only a couple of miles. My sister, 7 years older than me, still had to cycle. I bet she loved me for that. I did share MY car with some other 5 year olds so was not totally spoiled. By age 8, I had thankfully become quite healthy and that continued until I left school. Cross country running, hockey, swimming, oh the joys. Out on my bike, cycling miles, country walks with my dog, unlimited freedom, not like kids today. No computers, no telephone, no car, no central heating, no washing machine or microwave, black and white tv, the good old days, not on your life. Give me the mod cons of today every time.
Left home at 18 and set off to London to my first proper job. What an adventure after the remoteness and isolation of the north of Scotland. Had the busiest of years, out most nights, working hard, then zapped by myoclonic epilepsy. The downward spiral began. But at least I had had 10 good years. Not everyone can say that.
September 02, 2014
Two awful days
I have just had two really awful days. Worse than I have had for many months. Terrible head pressure and nerves screaming at me. Then it all disappeared in the space of an hour tonight. What does it all mean, I wonder. Once again I feel good and am wide awake in the middle of the night.
Well, I wanted something to change as it is a new month. Did not expect anything so dramatic though.
September 07, 2014
Unexpected friendships
Polar bears and dogs playing: http://youtu.be/JE-Nyt4Bmi8
Friendship is priceless and can come from unexpected places. Laughter surely is the best medicine and it costs nothing.
September 08, 2014
Simon & Garfunkel – Bridge Over Troubled Water
https://www.youtube.com/watch?v=CKZFdkCUksg
I am feeling much better tonight, More like my cheery, chirpy self that comes alive at night. Just getting short episodes now of head squeezes. I am sure things are looking up again.
September 09, 2014
After my pain free night, I have slept all day with painful episodes when awake. I am so grateful for the sleep.
Will be around in the early hours. Meantime, excuse me while I do my head squeezes and muscle contractions. Who says you need to get out of bed to exercise?
What do they know?
Have started a new thread for pure, unadulterated self indulgence and happiness only – “Chocolates, cakes and celebrations”.
September 12, 2014
Independence Referendum
Just catching up with the happenings of the week whilst I have been sleeping. In Scotland, there is only one topic in the news. Independence Referendum. Passions are running high, but I’m afraid my brain is too woozy to care!!!
Will go with the flow, it won’t make too much difference at my time of life. I would rather not take the risk of becoming Independent but admire all those who are ready to take a leap of faith.
Not impressed by the current incumbents at Westminster. The rich get richer, the poor get poorer. Not my idea of a fair or healthy society. I so admire the Scandinavians who have much less inequality in their societies. Too tired to do anything about any of it.
Woke up today very worried. Why am I not worrying about not getting better? Everyone else seems to be. Maybe I am just deluding myself. Maybe I won’t get better. I am not exactly going to win a prize for speed of recovery!!!! Maybe I will get dementia. Maybe already have it.
Oh well, who knows??? Can’t stay in the doldrums for too long. No point in wasting my cog fog on worrying. Got cakes to post and paintings to look at. Buddies to cheer up. Far too busy to worry.
September 13. 2014
Well, I have been awake all night. Serves me right for boasting about my marathon sleep. No one else is admitting to having marathon sleeps, just me. It is one year since I took to my bed. It is hard to believe really. Won’t be celebrating that particular anniversary.
I refuse to be despondent. I am alive. I am not dying as far as I know. I think I am still sane although that might be debatable. I do not have a permanent disability. I have every chance of getting better. The world is full of people’s who are in far worse circumstances than me. Looking forward is the only way to be.
Face the sunshine and the shadows will fall behind you. That is so true. Pessimism only drags you down, optimism buoys you up.
Between the optimist and the pessimist, the difference is droll. The optimist sees the doughnut, the pessimist sees the hole. Oscar Wilde
Give me the doughnut any day!!! Cakes on the brain!!!!
September 14, 2014
Bad day
I wasn’t able for visitors today. Nerve pain, head squeezes, headache and nausea all afternoon and evening and into the night. It looks as if I won’t be able to vote after all. It is a shame but I am sure there will be an unprecedented turnout. The referendum has certainly grabbed everyone’s interest which is good.
September 15, 2014
Contractions in my bum
I am getting really strong contractions in my back passage. Numbness and partial loss of control have been my most distressing symptom over the past few months. Last week it was nerve pain in my bum, now contractions. This must be a sign of things trying to get back to normal. It makes the misery much more bearable when there seems to be a real purpose to it. I just wish you could all get more tangible signs of getting better.
Most of my body and my brain has been numb for the past year so it is not really surprising that I can’t function physically or cognitively. Yesterday I felt really upset about it all but today is another day.
Well, I have voted ‘no’. A friend popped round so is going to post my ballot paper.
September 19, 2014
Listening to the radio, just waiting for the first referendum results to come in. The final result will come around 6.30 a.m. It is an exciting time for sure. I haven’t been able to listen to much of the discussion because of cog fog but I know the main issues.
Had a crappy day but ok just now.
Feeling like a butterfly
I had a window this morning – I had a clear mind and a great feeling of optimism. I thought “I am ready to be set free from the prison of the past 40 years (withdrawal just a wee blip), I am ready to fly like a butterfly ……” Pity about the wonky legs but hey I’m a butterfly.
September 20, 2014
It’s like waking up with a hangover every day. Nerve pain. Muscle contractions. Gloomy thoughts. “I hate this life.” Feel like Jekyll & Hyde character.
Watched a BBC documentary “Brass Tacks” about the dangers of ativan from 1987. So sad. Made me so angry. That is almost 30 years ago.
dangers of benzodiazepnies part 2: http://youtu.be/OWHKri71qaE
dangers of benzodiazapenes part 1: http://youtu.be/q2iZQ9tVSAU
How can this drug still be prescribed?
September 20, 2014
Bad day
No one brought me (virtual) breakfast in bed today. I was getting rather used to being pampered. I am just feeling very sorry for myself. I know this will pass. I know it. I know it. In the meantime just let me die quietly.
If anyone mentions cakes, chocolate or parties …..
September 21, 2014
Hoping to have visitors tomorrow afternoon if nerve pain does not hit me. I really could not stand it if it went on and on. Life is going to be good again. For all of us. Everything will be so much better because we will appreciate every second of it. I know how much I appreciate my “windows” and all the little moments of pleasure even during waves.
- A phone call
- A text message
- A funny video clip
- A beautiful painting
- A funny comedy prog
- A cup of tea
- A nice cake
- Yummy chocolate
- A lovely message or post on BB
- A get well card in the mail
- A visitor
- The sun shining
- A child outside my kitchen window
- A beautiful song
- A lovely bath
- A hug from Ted
……. many moments in a day
September 22, 2014
Unbearable pain
This has been the worst day of the past 12 months. Unbearable pain and nausea. Was unable to have visitors. Just curled up in bed in agony. Most of the pain is in my bowel. It has subsided for now. I can only console myself with the thought that this is part of the healing process and the numbness in my bum is diminishing. I hope I never have to go through another day like today. No little moments of pleasure. Until I saw the paintings. How can one not be uplifted by beauty? Tomorrow is another day. I hope it will be a better day for all of us.
September 24, 2014
Felt a bit manic this morning. Positive thoughts so strong they were hurting my brain!! This is crazy!!
Tonight I am so so very sad and just want to cry! I hope all my Buddies have had a good day. I hope tonight will bring us all some peaceful sleep.
September 29, 2014
Went to bed last night with an ice pack (for pain) and a hottie. Slept well from 3.00 -10.00. So far so good.
Looked in the mirror this morning and saw this old woman looking back. Time to get my eyes tested, right?? It could be those perceptual disturbances again. Sigh!!
I am ok tonight. Still can’t believe how bad that nerve pain was. It was my whole body, my head, face, even inside my mouth. Everything was sore to touch even when the pain stopped. If that is what it takes to get my body back then it is worth it but it was beyond my limits of endurance.
(at 18 months post taper)
September 30, 2014
Almost cried
I had a nice surprise today. A couple moved in upstairs a few weeks ago. They came to my door one morning. They phoned today because they were worried they had not seen me. I was so touched. These things mean such a lot just now.
I almost cried tonight watching a TV programme. Haven’t cried for a year.
October 08, 2014
Can’t function
What a day!! Can’t believe I slept until 3.00 pm. So groggy, can’t function. Took a huge effort to order tablets online, have a shower and make something to eat, with rests in between. Head so heavy.
October 10, 2014
Managed to have a bath and wash my hair. What a humungous effort it was. Put out the garbage. That was slightly easier.
October 12, 2014
You’ll never walk alone
The sun rises, a new day dawns. Do not be afraid, for I am with you, until the end of Time.
Gerry & The Pacemakers – You’ll Never Walk Alone: http://youtu.be/OV5_LQArLa0
October 13, 2014
Sleepy day
No pain today. Some brain squeezing and muscle contractions but not too bad. Just can’t stay awake. There is no happy medium, is there!!
October 14, 2014
Massive contractions
Just slept another 5 hours. Woke up to massive contractions in my pelvic area + brain squeezes. It is as if my body’s capacity for childbirth is being optimised. Does my brain not understand I am 60 years old!!! Honestly, I am exhausted. I don’t worry about muscle wastage, mine get plenty of exercise lying in bed. It is like a full body workout, I kid you not!!
October 16, 2014
Not such a good day. Brain squeezes and hours of muscle contractions in my legs and pelvic area. Fingers very numb.
October 19, 2014
Nerve pain
I’m afraid today has been horrid. Nerve pain again for 4-5 hours. Not able for visitors. Hands not any better. I did sleep ok.
October 21, 2014
Body felt almost normal
I was awake all night. However, I felt much better so can’t complain. My body felt almost normal for a few hours and it was a strange experience. I guess I have got so used to being in pain or discomfort everywhere. I just wanted to lie in bed and enjoy feeling normal again, no symptoms, no discomfort, no muscle contractions or nerve pain. I have not felt like that since Sept last year. My brain wasn’t right but hey one step at a time. I feel very uplifted by the experience.
October 23, 2014
I am ready to fly like a butterfly.
Dolly Parton – Love is like a butterfly.
Haven’t been too bad today though I can feel low level discomfort all over. Typing still difficult.
October 28, 2014
Yesterday was a brilliant day. No pain. Felt good. Today not so good but that is because I hardly slept. Feel as if I am just on the cusp of being well again.
Still can’t believe it. A dramatic change which I never imagined would happen. I will be very upset if I get thrown back into a wave.
(at 19 months post taper)
November 08, 2014
Today has been awful with a long session of nerve pain and brain squeezes. By evening the pain had passed. I got up and spent half an hour doing little jobs in the house.I managed to do what used to take a whole week. Went outside with garbage. Legs felt stronger, head clearer. Physical functioning better. Played online scrabble. Have downloaded more word games. I am doing quite well. Cognitive functioning improving.
November 13, 2014
Less sensitive to news
I don’t expect to sleep tonight after sleeping 20 hours. At least I can listen to the radio and do puzzles. No pain or discomfort.
I think I am less sensitive to bad news on the radio/tv. Had to switch off before. May not be a “good” thing but is more normal.
November 14, 2014
Felt ill last night. Slept from 1.00 to 3.00. Woke to a bout of nerve pain. It has passed but no more sleep. How many more months? Fed up of this life!!
November 15, 2014
So tired of this whole business. There is not one hour when I am free from symptoms. It would be nice to feel well just now and again. Fed up in bed. Fed up watching tv, listening to the radio and doing puzzles. Fed up being awake at night. Hate the nerve pain. It is horrible, hate my numb hands. Want more company. Want to get up and do things.
There, that is better!! A good rant always helps.
Love posting/seeing cat pics. Love looking at paintings. Love looking for funny pics. Love chatting to friends on the phone. Enjoy my meals usually. Enjoy a bath or shower. Enjoy cartoons and comedies. Can concentrate on more serious programmes now.
(at 20 months post taper)
December 06, 2014
Excessive sleeping
Just slept another 6 hours so that is most of the night/day/night. At least I get respite from feeling ugh!!
Groggy after all that sleep. Just want to go back to sleep.
December 11, 2014
Nerve pain
Today has been miserable. More nerve pain. I am lucky it is now an occasional bad day rather than every day.
December 14, 2014
Sleeping better
My sleeping pattern is starting to normalise. I sleep most of the night now and am awake most of the day., usually. I actually feel sleepy at bedtime, not wide awake as before.
December 15, 2014
Best day so far
My best day so far, I think. Up and dressed by 12. 30. Visitors 3 hours. Coped well. Brain fuzzy. Slept 2 hours. Very tired.
December 19, 2014
Slept a lot
I have slept most of the day and all night. Was not able for my visitors.
Sad tonight.
December 22, 2014
Finally fell asleep only to be woken by the postman. Never mind, he had some flowers to deliver for me so that was lovely. Never had flowers in the mail before. Inside a box.
Had a Xmas card from a friend. A little butterfly on the envelope beside which she had written “you”!! She does not know about my visions of flying away like a butterfly when I am better. Uncanny. I am going to fly very soon.
December 25, 2014
Christmas Day
I slept until noon. Woken by an unexpected visitor whom I had not seen for many, many years. She is 84 and had driven across town to see me. Lovely surprise. My other friends came at 2.30 and stayed for a couple of hours. It was lovely but took a lot out of me. Fell sound asleep for two hours.
December 28, 2014
Brain squeezes/muscle contractions
Have slept most of the day. Wake up to brain squeezes and muscle contractions especially in the pelvic area, Can’t do a thing except go back to sleep. It will get better towards midnight!!
December 31, 2014
Good Hogmanay
Have had a much better day. Awake since 10.00 a.m. Shopping came, had a proper meal, did some household chores, had a shower, phoned a friend. That is a lot for me!!Put out the garbage. A lovely evening for Hogmanay (New Year’s Eve). Cold but not too cold. Can hear fireworks going off already.
(at 21 months post taper)
January 03, 2015
Sleep, sleep and more sleep
A cup of tea. Wonderful. Just have to stay awake long enough to drink it. Sleep is wonderful but this is not!!! Can’t stay awake and can’t function when I do waken up.Manage to have a cuppa and a snack then back to sleep. Posting is hard and can’t do puzzles. Just sleep, sleep, sleep, sleep.
January 07, 2015,
A BREAKTHROUGH
OMG!! The contractions in my legs and pelvic area are so strong!!
I can feel the energy getting into my legs. It as if a wonky electrical connection has been fixed!!
The signals are coming through from the nerves to the muscles.
It has stopped now but it felt so good.
Yippee!! Want more!!
January 09, 2015, 01:39:12 am
I have been snoozing off and on when I get the chance. More head pressure, brain squeezes and muscle contractions. Just the usual!! It will be weird when this is all over. It will take time to get used to being well again. I might sleep tonight because I don’t feel so good. Hope so.
January 18, 2015
Patience is the key
Well, I was awake all night and felt good. Had a few bouts of nerve pain today. My brain shuts down and I go to sleep. Must have slept 7 hours today. Afternoon was ok, phoned a friend. Slept all evening.
Would so love to have my life back but have to keep remembering how far I have come. It is only natural to feel frustrated but I try not to dwell on what I can’t do. The excitement of ironing my duvet cover has worn off already!! Patience is definitely the key. Getting annoyed is pointless.
January 24, 2015
Not happy
I got a bit more sleep too. Not happy today. All these muscle contractions inside my bum for hours at a time. I hate it so much and just wish it would stop. It has been painful this morning.
January 24, 2015
Black mood
Just read my progress log for the past 6 months!! Why the hell is it called a progress log?More like a “record of daily torture”!! Good bedtime reading for a sadistic individual.Oh dear, I am in a black mood tonight. Or I am just fair scunnered as we would say in the north east.
I knew it. It’s that b***** government again.
January 25, 2015
I managed to sleep some more. Have managed to tidy up in the kitchen and have my breakfast. Was on my feet for 30 minutes. A year ago that was unthinkable. I have to drum that into my head. I am making progress but a trip to Australia is perhaps a tad ambitious.
January 28, 2015
Not a good day. Just more of the same old ……….
When will it end? Month after month after month ……
I hope I get another jolt tonight. One that jolts my brain and body back into normal functioning.
(at 22 months post taper)
February 03, 2015
I ate my macaroni sitting at the table. Felt good for a few minutes, then the heaviness returned in my brain.
February 04, 2015
Bedtime again. Had a bath and washed my hair so feeling nice and fresh. A year ago, having a bath just about finished me off. It is easy to forget that. Now I can enjoy it.
February 05, 2015
New telephone arrived. Can now block all unwanted calls. (Had been in tears over this issue.)
All this technology is too much. Especially when you are sitting in bed, trying to fix laptop by following instructions on tablet, with mobile phone, landline phone, tv remote control at hand just in case you need to text, chat, catch up with the news.
Phone rings, point mobile phone at tv and answer landline by placing tv remote to ear …….
February 10, 2015
(New telephone not working)
I am sure I put in the microfilter to stop interference from.broadband!!!!!
all ok now.
(tablet stopped working, bought new batter)
Not so good news re tablet. Got battery but now know it can’t be changed except by Samsung. Can’t see to that just now so will get a new tablet. just thankful I have the money to buy one. My emotional response to all this has been way too much. you would think it was the end of the world.
(I felt absolutely bereft without the tablet. I needed access to BB and it was very difficult on the mobile phone.)
(at 23 months post taper)
March 10, 2015
Brain squeezes and muscle contractions in lower half of my body are now almost gone. My only symptoms now are in my brain. Heaviness, fuzziness both still make functioning very difficult but otherwise I seem to be fairly well.
21 days to go to my 2 years anniversary!!
(and later in the day)
I feel almost 100% well, physically. Brain just a bit fuzzy. I do believe that I am almost there. I tried to do a few things around the house but no change in how much I can do.After being in bed for 18 months, it will take a few months to get back on my feet.I am just waiting to see if this good feeling lasts. My mood is quite stable. No euphoria. I can’t believe it.
(and later in the day)
OMG!! Is this really it? Am I really almost well again.
Best wait and see.
March 11, 2015
I haven’t had any sleep during the night for 2 weeks. Just during the day. I was lovely to sleep during the night even for a few hours.
March 23, 2015
I am still in a mood. So fed up with everything. Could not have visitors yesterday, again!! I think I have seen my friends 3 times this year. Have lost another filling and can’t go to the dentist. All in all, I am just plain fed up.
Doing puzzles, eating, drinking, going to toilet, sleeping, posting on BB, listening to the radio, that is my life and has been for 18 months. I am feeling so sorry for myself today.
March 25, 2015
Very strong contractions in my bum as always but the head pressure which always comes with it has stopped. A huge relief. Will see if this is just a temporary change or if the head pressure has gone for good. Have had it daily for almost 18 months.
March 31, 2015
I can’t believe how close I am to being well again. The rest of the journey will be easy now. Just a bit more patience and acceptance needed. Nothing happens quickly in benzo withdrawal. Just make the most of each day as best you can.
(at 24 months post taper)
April 02, 2015
I dusted my bedroom tonight and then I had a shower. This is a rare feat for me. Was on my feet for an hour and did not feel like I was dying afterwards.
April 06, 2013
Childhood memories
http://i.ytimg.com/vi/qRJzRfASUX0/maxresdefault.jpg
My first ever TV programme. Oh my. Black and white TV, posh presenter’s voice. I remember it well. I was ill in bed as I often was as a child. Nothing much has changed!! Bill and Ben and Little Weeeeeeeeeeeed!!
ATV – “Bill & Ben The Flower Pot Men”: https://youtu.be/hcF9JSxkUSE
There was a different programme on every day. We only had one TV channel.
Mondays – Picture Book.: https://youtu.be/qE9dsOu3oE8
Tuesdays – Andy Pandy 1952: https://youtu.be/XuPVcxzVD5A
Thursdays – Rag, Tag and Bobtail.full episode.april 1957. https://youtu.be/cW0yPnGXFDU
Fridays – The Woodentops 1958: https://youtu.be/QewiLgTJYyQ
Oh my, what one does to pass the time in benzo withdrawal.
April 07, 2015
Watching those childhood programmes again was a lovely experience for me because I was able to once again connect emotionally with myself as a child. I have not been able to do that for 40 years. Always wondered why. I once again feel the emotional security I was lucky to have as a child.
At last I am a complete, integrated whole again. How sad I had to wait this long.
Better late than never though.
April 10, 2015
I feel like I am drugged during the day then wide awake all night. Neither state feels normal.
April 11, 2015
3.00 a.m. feeling better so wide awake now. Just fed up really. Went out with the garbage. Lovely night. Not cold Still far from being well when up on my feet. ok in my bed though.
It is amazing what we humans can get used to. All these symptoms. Can’t wait to get rid of them though. I usually do a few things but only after midnight. Oh dear!! At least I can do them!!
April 12, 2015
Yes, my biological clock is reversed but am sure it will un-reverse itself again. I have just let everything sort itself out so far and it seems to be working ok. I was awake all day yesterday and just felt miserable. I would rather be awake at night and feeling good. At some point I may decide I need to take a more active role in trying to speed my recovery but not yet.
(Note – any attempt to force myself always backfires and I feel so much worse)
April 13, 2015
Just woken up from my slumbers. It is 7.00 p.m. Wish I could be awake during the day.
April 15, 2015
Sometimes wonder if I will ever get out again!! This is such a slow process. So glad to be free from pain but now stuck at the limbo stage. No longer very ill but still not well and still not functional. Listening to the news soon ends my self pity.
This daytime sleeping is bad just now. Woke at midnight yesterday and 10.00 pm today. The contractions in my bum seem to be getting weaker and weaker which is really good. Hope I will come out of this phase with a higher baseline. It does worry me though. But what can I do about it? Nothing!! Worrying is just a waste of energy.
April 16, 2015
My ability to recall words seems almost back to normal. Doing crosswords fairly easily.Reading still difficult. That will come. I was getting very despondent but now hopeful once more.
April 19, 2015
Awake all night here as usual. Feeling ok though and walking about in the house seems easier. Not quite up to long city walks just yet. Can do arm exercises no problem. Arms not heavy any more.
April 21, 2015
Slept 3 hours during the night.
April 23, 2015
Slept until 10.30 a.m. About 7 hours in total.
The head pressure is 95% gone.
April 24, 2015
I have lost 2 fillings and can’t go to dentist so have to be careful. I have made an appointment for 10th June in the hope I will be able to go. We’ll see.
I only slept 2 hours. Contractions in my bum off and on all night. As soon as I settle down to sleep, they start up. My brain shuts down first which I interpret as needing to sleep, so I settle down, then the contractions start. Fed up with it. Must be a year this has been going on. Have really bad haemorrhoids now which worry me. Checked out local private hospital on the web and they do treat them so if the worst happens I can go there. NHS has long waits. Not up to going to hospital either but if it became necessary I would have to. I hate what this withdrawal is doing to my body.
I can’t read or watch tv very much at all so I downloaded an audio book today and managed to concentrate for 30 minutes. Wow!! Pleased with that. Not easy but I did it. The visual aspect of reading/tv must be the problem. My brain is less fuzzy now and time is now dragging. Able to do a bit more cognitively but not enough to pass all the time I have on my hands.
Anyway, that is a symptoms update. The little signs of improvement keep me going. Every little achievement is a victory. We will get well, for sure.
April 26, 2015
It is a lovely day here though it is cooler again. Wish I could go for a walk. Had hoped to see friends today but not up to it AGAIN!!!
Slept on and off last night. It sure is a drag. However, the longer we can’t do things, the better it will be when we can.
I am getting so much pleasure from listening to my first audiobook. Not able to read for 2 years and I spent half my life reading as it was a big part of my work. I can concentrate and follow the story for 30 mins and even better remember it. How’s that for progress!!
Sitting at the table for meals is such a pleasure too after 18 months of eating in my bedroom.
We have so much to look forward as our symptoms diminish, rediscovering life with fresh eyes and renewed vigour whilst other folk just take it all for granted. I think it will make up for the many months spent cooped up at home.
Life will be good again.
April 26, 2015
My day has been mixed as most days are now but at least I get a few good hours every day now.
April 27, 2015
Can’t believe I slept ALL night. I get so caught up with the daily grind of symptoms I forget how far I have come.
NO DEPRESSION
NO EPILEPSY
AFTER 40 YEARS
Only got cog fog and contractions in my bum + some brain squeezes and head pressure.
Why am I still complaining?? I have no idea!!
Now a question. Why do my head and legs still feel like lead when I wake up? Is it sleep paralysis or something else? It’s nothing new. Had it for 18 months. Just wondering if a hormone is involved or if sleep paralysis continues after waking. Don’t know what induces sleep paralysis. must google it.
Most curious. Why just my head and legs, why not whole body?Ah well, my brain is working!!
And later …..
http://www.huffingtonpost.com/2012/07/18/muscles-paralyzed-sleep-sleep-act-out-dreams_n_1677587.html
Might have known it! GABA receptors involved in switching on/off sleep paralysis.
Not worried, just curious. Had this while on drugs too but not as bad as it is now
And later ….
Just been looking at above link. It is no wonder we are so badly affected when you look at all the functions of the nervous system. Fascinating really.
April 28, 2015
My perception of time has changed so much!! April seems to have gone on forever, yet the last 18 months seemed to pass by quite quickly.
I wonder how our perception of time is affected by neurotransmitters/hormones?
Another thing to google!!
April 29, 2015
Pssst, I slept all night – AGAIN.
It really is AMAZING after all those months of being awake all night and asleep all day that suddenly my body clock has normalised, almost. Still feel drugged when I wake up and still sleep during the day when I feel bad, but still amazing. I feel sleepy at bedtime now, not wide awake as before.
April 30, 2015
Slept all night and all morning again. Sorry to those of you who can’t sleep. I am very groggy for a few hours after waking up. I also don’t seem to get the spikes of mental energy I used to get. Much more sluggish.
25 months off today. Will it ever end?
Time seems to drag so much now. April seems to have gone on for ever, unlike previous months.
All these changes are a good sign really but just wish I could get into my tardis and be whisked into the future.
Now there’s an idea ……..
And later ….
I managed to do some bits of housework. Was up for an hour.
Usually only happens about twice a month.
May 02, 2015
It is incredible how my sleeping pattern has just switched round. Can’t say I feel better as I used to feel quite good during the night. Mornings are lost to sleep, afternoons are not good, but evenings are pretty good. It is probably much the same, just a different pattern.
Psychologically it is better, feels more normal. Can have regular meal times too. See more daylight. It is lovely to feel sleepy at bedtime instead of wide awake.
All positive.
May 14, 2015
Put the garbage out during the night. Walking is definitely easier but it still makes me feel awful after just two minutes!
May 21, 2015
Had little sleep. Toothache too bad to ignore, emergency appointment at dentist. Half my tooth had broken off, not just the filling, and it is infected. Also a filling lost from another tooth. Broke down at the dentist. The pain + the effort of going to the dentist was too much. I cried for the first time in 20 months. Dentist prescribed antibiotics and I get tooth out on Monday. Antibiotics don’t upset me.
Friend met me at the dentist and came home with me. Took taxis. He also got antibiotics for me. I could not walk to pharmacy to save my life.
Pain has eased a little but not up to posting any more just now.
May 25, 2015
I had such a weird day yesterday. Woke at 2.00 pm. All day, I thought it was first thing in the morning, right up to bedtime. It was a perceptual thing not just the usual mixed up feeling or losing track of time. Then I had these giggling fits followed by great sadness. It is just as well I live on my own. It is crazy.
Then there is the never ending problem of going to the toilet. It is very difficult to tell when I need to do a poo. Generally I get leg twitching, then this downward pressure on my brain and a vague sensation up my back that something just might be there ……. It is one of the most difficult symptoms I have to deal with. I often get really strong contractions for a microscopic poo and no sensation at all for enormous ones. As soon as I pass something the pressure on my brain is released and I can function physically and cognitively.
Going to the dentist was ok (for tooth extraction). Just very unsteady on my legs which is only natural and then quite dizzy afterwards. Friends took me home and stayed a couple of hours. Bumped into my upstairs neighbours who are very nice. What a busy day.
So lovely to be outside and see the world again.
May 26, 2015
Feeling ok today. Tired but ok. I did enjoy getting out but it really has hit me that I am still very ill. As the fuzziness in my brain gradually clears I can see things more clearly. It has cushioned me from the worst of the pain I think and from realising how ill I really was and still am.
How can it have taken 19 months just to be able to sit up at the table? It took months and months to be able to sit up in bed propped up with pillows then I gradually needed less support for my head and back. How can it have been this bad?
Ah well, no point in dwelling on these things. Just enjoy the progress. Progress means there is always something to look forward to.
Sat at the table for 2 hours yesterday chatting to friends.Wow! 2 hours! And after getting a tooth out!
May 27, 2015
I decided to vacuum the carpet this afternoon and hurt my back. Honestly!! What a life! I was so pleased with myself too. Up and about, doing one or two things in the house.
May 28, 2015
Well, my grocery shop came today. Managed to hobble to the door and put most of my groceries away. But wait, 6 punnets of plums!! I only ordered ONE! Didn’t I??
Ah well, diet of plums for the next week.
May 31, 2015
26 months today. Can’t believe this is taking so long!! I am very fortunate to be largely free from pain and distress. My ability to function physically and cognitively is still so very limited but slowly improving nevertheless. So I don’t have much to complain about.
My 61st birthday is next month but now think I might be 62 before I am well. The main thing is to make the best of each day, doing whatever we can to enjoy it, or at least making it as bearable as possible depending on where we are in this journey.
I have to keep reminding myself how far I have come.
I keep saying to look forward and not back but sometimes looking back is a good thing because it is a measure of how far we have progressed.
June 01, 2015
Just in a fed up mood. Nothing to complain about really. Each day is more or less the same here. Sleep from 4.00 am to mid afternoon. Very groggy for a few hours plus leg twitching/muscle contractions and downward pressure on my brain. Starts to ease off mid evening and my best time is 9.00 pm onwards. Usually have a shower and do little bits of housework!! Then the next day …..
June 02, 2015
BREAKING NEWS – 100% IMPROVEMENT
Getting out of bed 2 hours a day instead of one.
June 07, 2015
I went for a little walk at 2.00 am. Not far but my first walk other than going out with the garbage.
June 14, 2015
DRUG FREE FOR FIRST TIME IN 40 YEARS.
Tapered off 225 mg effexor from August 2014 to June 2015. No apparent withdrawal symptoms.
June 17, 2015
Wrote to GP practice, explaining my experience of benzodiazepine withdrawal syndrome and the fact that I am now free from depression after 40 years.
June 19, 2005
Watching unwanted dogs on TV. Battersea Dogs’ Home in London. Not much unhappiness in it. I have not watched TV since last year. Still doesn’t “feel right”. Maybe watching and listening combined is too much. Back to my puzzles!
June 21, 2005
Had my very first “all night” virtual birthday party.
Registered for UK Conference “More harm than good” – more in hope than anticipation!!!
4 phone calls …… 4 hours on the phone. Shopping delivered. Went out for my little walk in the daylight. Yes, progress is definitely being made.
Taxi ordered for trip to dentist tomorrow. Getting a filling.
June 22, 2015
Back in my bed. Face even more numb than usual. Drinking tea with a straw. Was an awful struggle. Felt sooooo ill! Did not sleep much so that did not help.
Saw the trees, flowers, grass ……. wonderful. Quite cold for June.
June 23, 2015
Has been a rough day but feeling better now that night is here.
Have now written 10,000 words of my life story. It is just pouring out. The more I write, the more I remember. Not sure what the title will be but “One bloody disaster after another ….. ” seems appropriate right now! It is not going to be a depressing book, I hope. Of course it is sad but there is plenty of humour too. It is not primarily about benzos either, my life has been about so much more than that. Will see how it develops but at this rate it might be a bestseller by next week! I wish!
Just organised a service for my gas boiler.
June 24, 2015
Just reached the 17,000 word mark and can now see 20,000 words as being feasible. Keep remembering bits and pieces to add in. I am finding it very easy to write about my life. It used to take a week to write one academic paper so this is a new much more pleasant experience. I have gone over and over my life in my head ad nauseum so no wonder it is flowing onto the computer with little effort.
June 25, 2015
Got a nice reply from GP answering my letter. Sympathetic and offering help. ?what kind Don’t need any. Too hard going to see doctor anyway.
June 26, 2015
Ordered a new laptop. Can’t access internet on my current laptop.
Will continue to do what I doing ……
June 30, 2015
I don’t know if this is a reaction to doing too much or just the “natural” course of benzo withdrawal. Do I just get a good “window” and do stuff then a “wave” just follows. Whichever way it is, I just hate being totally incapacitated. It feels as if a plate is pressing down on my brain. It is usually ok if I can do something but being unable to listen to tv/books/radio and unable to type is too much. It is as if the connection between brain and body is almost severed. Next stage would be paralysis, or so it seems. Have just been sleeping today.
When the plate descends not only am I physically and cognitively non functioning, my emotions and thoughts are dark. As soon as it lifts my thoughts/mood are upbeat again. It happens within seconds, like night turning into day. I find it unbelievable.
July 01, 2015
Laptop going back. Cost £500. Mouse pad too stiff, cursor hopeless to control. Hate Windows 8.1
Ordered MacBook.
July 03, 2015
Body kaput, brain half kaput, fingers useless.
July 06, 2015
Typing on my new Mac. It is absolutely wonderful compared to the Lenovo Yoga and Windows 8.1. I am just so pleased. If I had been well I probably would not have been willing to pay for a Mac but as I am not spending money on anything else really I thought why not. Every cloud …….
I can type ok on the keyboard but not on tablet/phone. Must be using different part of my fingers I guess. Otherwise I just don’t understand it.
July 08, 2015
I am feeling much brighter now that it is bedtime here. I should really stick to doing difficult technical tasks during the night and just do some dusting during the day! I just feel so much better during the night. I have been trying to find a mobile hairdresser but it isn’t very easy. Not had much luck so far.
July 09, 2015
I went out for a little walk this morning. Managed to leave the complex where I stay and go onto the street. First time on my own since Sept 2013. It felt so good. Not so low today.
My MacBook is just wonderful. No comparison to the Lenovo Yoga but of course it was almost twice the price.
I am happy tonight. Miserable feeling has lifted. Afternoon wasn’t good at all and I fell asleep. But tonight I did my “long” walk outside the complex again. It is really quite chilly for this time of year but I don’t really mind.
I felt quite well tonight for a little while. Not just a bit better than usual but actually WELL. I have had a couple of times before when I got a glimpse of what was to come. Once a rush of energy through my brain, the other a rush of feeling through my legs. Both were fleeting experiences but just gave me a glimpse of what was going to come. I think tonight I had a glimpse of what it will be like to be well again.
July 11, 2015
Have written another 1,000 words of my life story, now nearly 31,000 words.
July 12, 2015
I was “gallivanting” again this morning. I went to the corner shop – not been to a shop for such a long, long time, I just had to buy a few things just because I could. The shop is a new one since I became ill. It was a Post Office which was handy but it closed. I bought some lovely birthday cards. Have missed sending those over the past two years. Also some lovely Scottish shortbread (biscuits), yum yum and a newspaper. I now feel more normal.
Not feeling so good though as i hardly slept last night. Not a setback just lack of sleep. Have been playing around with old photos on the computer and putting some into my “life story”. It looks much more interesting with some pictures.
Have had the men’s tennis final on and it was exciting as usual. I don’t watch it, just glance at it now and again.
July 13, 2015
I made it out for a couple of walks today but didn’t feel good. My legs would not function properly, brain too sluggish. Never mind, tomorrow I have a hair appointment and looking at the map i realise the salon is within walking distance even for me. Unfortunately it is at the bottom of a hill so may not manage to walk back home. If I can’t manage tomorrow I have a mobile hairdresser booked for Friday so one way or another I hope to get my hair cut.
July 14, 2015
Oh my word, I made it to the hairdresser. Yes I actually walked there and back (only 5 minutes each way but down a hill and coming back was hard). Also went to the cash machine. These are such ordinary things but so good to be able to do again.
July 15, 2015
Today has been busyish again. Slept well. Scanned more old photos onto my MacBook. My sister phoned. My shopping came. Went out for a little walk and bumped into my neighbours in the car park. It has been all go!! My cousin has arrived in the UK from Australia and is visiting my sister today and tomorrow. I will see them at the weekend. I am so pleased I got my hair cut.
July 17, 2015
I haven’t been so good today. Slept okish but not enough hours. Went for a walk in the rain at 6.30 a.m. New BT Home Hub (modem) came. Set it up but apparently it can take hours to come into operation. Don’t understand why. Realised my landline was cut off because of it and of course no internet. I could not cope with being “cut off” so set up the old modem again.
Then heating/hot water stopped working so have neither. Got very upset, can’t cope with these mini crises. No resilience for extra challenges!!
Cousin from Australia arriving tomorrow. Knows nothing about boilers. I hope the house isn’t going to be too cold. It is ridiculous for the middle of July even in Aberdeen!!
Someone will come out Monday or Tuesday to fix boiler. I can cope until then. Don’t know why I am so upset about it all. It isn’t really a major problem at all.
Have been thinking back to my aunt and uncle who only had one tap with cold water in their kitchen, no bathroom, outside toilet and that was the way they lived for years and years. I can cope for a few days.
A good sleep will help.
and later ….
STOP PRESS!! I JUST FIXED THE BOILER.
Will still get engineer to come and look at it though in case it happens again. It is 15 years old and it is maybe time to get a new one. I am feeling so clever but I just turned a valve and released an air lock.
July 18, 2015
Walked down to my little supermarket today and back again. Then my cousin and his wife arrived from Australia and I was so happy to see them. We chatted for a couple of hours and then they went to their hotel for a rest. They came back at 6.30 and we went out for dinner. Got home 10.00 pm. My most amazing day so far.
July 19, 2015
I had another lovely day. Slept 12 hours – no wonder after my busy day yesterday. Went out this afternoon with my cousin. His wife had an upset tummy so stayed in bed in their hotel. My cousin and I went to the beach because it was sunny and warm. We were no sooner seated with coffees outside when the rain came on!! Just typical Aberdeen weather. Never mind we had a good chat then we went to a local park to the indoor gardens – all kinds of exotic plants in large greenhouses.
Anyway it was a good day and I feel fine – just tired.
Have just been out for another little bedtime walk (10 p.m.) – about 20 minutes. Very slow so I don’t go very far. It is wonderful, just seeing people again and the fresh air, the weather doesn’t matter too much. Will keep trying to go a bit further.
July 20, 2015
It is 5.20 a.m. and I cannot sleep. After 12 hours last night and 12 hours the night before it is hardly surprising. Went out for a walk at 3.00 a.m. It was quite mild. Didn’t go far, just round the perimeter of the complex where I live. Only saw one other person. Hope I get to sleep soon.
Just been watching videos about a charity in Malawi which supplies artificial limbs It was started by a Scottish woman. She was a lawyer and one day she wasn’t feeling well and ended up in hospital. She had meningitis and within 24 hours had lost both hands and both feet. I think she is amazing to be out there helping others and getting on with her life. She was in hospital for a year.
July 21, 2015
Lots more rain forecast here apparently. What on earth has happened to summer this year? Ah well, can’t do much about that either.
Plumber has been and I need to get a new boiler. I am not surprised as it is 15 years old.
And later ….
I was quite happy with the idea of getting a new boiler until the “boss” came and told me what it is going to do to my kitchen. Boiler will be smaller, at a different height, tiles will have to be taken off the wall, no doubt some redecorating will be needed. I can’t cope with all this. He is sending me an estimate so will have time to get used to the idea. Not happy tonight.
Spent an hour with my neighbours upstairs.
July 22, 2015
I have been out for another walk tonight but it was a struggle trying to put one foot in front of the other. My brain is still not connecting properly with my legs. I just need to be patient, I am doing so much more than I was able to even a few weeks ago.
July 23, 2015
I have had another busy day. Saw my neighbours in the morning because they knocked on my door to tell me something and so we had a chat.
Took a taxi to the hygienist in the afternoon. Decided to take a little walk after my appointment and had a coffee and a cake in a little cafe not far from the dentist. Popped into a bookshop but felt really ill by then so had to give that up and get a taxi home. I get frustrated of course but I had done quite a lot so am pleased too.
Went out for another walk in the evening.
July 26 – bad wave
Bloody awful day. Downward pressure on my brain. Breathing difficult. Can hardly walk. It all seems so much worse after a good spell. I know it will pass but it is upsetting to be so incapacitated once again. I just hope this will pass soon.
July 27, 2015
I have had another horrible day. I just can’t do anything. Typing a few posts is my achievement so far and it is evening. I hate these days when I just have to lie in bed and do nothing. Can’t use my brain and can’t use my body. Tried to go out for a little walk but it was no use, had to turn back. Tried to do a few puzzles but my brain would not function.
July 28, 2015
I have had a good day. Morning wasn’t great but from about 2.00 pm onwards has been fine. My friend, M, came and stayed 4 hours. That was a long visit for me and i was tired by the time she left. Then I had a phone call. Finally had something to eat at 9.00 p.m. Then I started fiddling about with a self publishing software package for the umpteenth time and actually succeeded in getting the text of my book into it. I have tried so often and failed so I am very well pleased. I still have to add the photos so there will be more tears before I finally get it all into the package. Not sure if I want to go down the self publishing route as opposed to getting someone to do it for me but I was so upset that I could not get the hang of that package. Now that I can, I am happy whether or not I actually use it to publish my book.
I had a good afternoon. Went out for a coffee to the university campus with my friends. We like it there and of course it is yet another trip down memory lane. The university is centuries old. Of course there are lots of modern buildings round the campus too.
It is cool and showery here and of course we are all complaining but it is better than having hot weather like you are having.
July 30, 2015
I have also now mastered the self publishing software but still not too happy with it. For example, it does not have the facility to wrap text round photos so you have to fiddle about creating text boxes above and below and at the side of the photo. Either that or leave blank spaces at the sides of the photo. I prefer the text wrapped round. I am sure that if I paid someone to make my manuscript into a book, it would look much better but who knows, I don’t really know that.
I don’t have the patience or the dexterity just now to fiddle about with minute changes on the computer.
It isn’t easy with a compromised brain, poor short term memory, fingers that aren’t working quite right …. think I am doing rather well given all that!!
Just filled in a form requesting a copy of all my medical records. I wonder what they will come up with.
nevertrustadoctor 
