Rehabilitation at Home
The diary entries are from months 8 through 13 after my TBI. The numbers shown after each date represent my wellbeing score:
1: Excellent, 2: Good, 3: Average, 4: Poor, 5: Dreadful
Monday 14th March 2016 - 2
Felt OK most of day, did a bit much on rower but mentally OK.
Went for walk to Higherlands with Ruth later and started to be physically OK.
Would say that mental condition was good from 2pm till going to bed, though tired in evening.
No afternoon kip.
Tuesday 15th March - 3
Visit by Jon. Felt a bit more head weary than expected (could be a bit of stress).
No afternoon kip.
Wednesday 16th March - 1
Went to Headway. Was anxious in morning but thoroughly enjoyed it, though pool caused eye difficulty. Went to mum's and Higherland once back, so still had energy. Felt fine in evening - much better than anticipated.
No afternoon kip, or rest whatsoever.
Thursday 17th March - 1
Had basic day staying in. Needed afternoon sleep.
Head / brain felt much clearer than usual, though had downside of bad throat infection.
Friday 18th March - 3
Saw Dr Ball in morning - found it rather stressful and brain became pressured.
Walked to mum's then doctors and it was rather tough.
Saturday 19th March - 2
Footloose day. Head strain anxiety in theatre. Overcame once well into production. Came out feeling very well and was nice return journey head-wise. Was anxious and dizzy before lunch.
Sunday 20th March - 4
Really bad finger tingles. Felt tired and miserable all day.
Monday 21st March - 2
Shelton visit to Leslie.
Finger and mouth tingles.
Tuesday 22nd March - 1
Walked to Trent Vale GP, quiet day.
Wednesday 23rd March - 2
Didn't go Headway as Olivia came over with her bad throat. Miserable day where didn't really do anything. Tingle in left fingers developed quite badly.
Thursday 24th March - 1
Ruth at home. Saw Sue Jones in morning then had trips to and from Springfield garage for the Golf.
Friday 25th March - 1
Had first tingle pill last night. Slept through in morning very well.
Felt clear headed and positive in morning - rather strange!
Sue and the girls came round for tea.
Saturday 26th March - 1
Felt very good all day. Head never felt muzzy at all.
Three consecutive good days - wahay.
Sunday 27th March - 3
No four days in a row, a little bit head weary today and tingles are a bit more evident.
Not a bad day in truth, just not as good as the last three days.
Monday 28th March - 1
Ruth and I went to Trentham Gardens and walked up so DoS.
Tuesday 29th March - 2
Felt a little head pressure but otherwise felt mentally positive, maybe helped by early YKW.
Fingers became bad tingle sensations in evening.
Wednesday 30th March - 2
At Headway. Enjoyed ping pong but head became a little fuzzy. Generally feeling positive.
Thursday 31st March 2016 - 1
Generally felt reasonably well with no mental distractions. Had haircut, did rower pb. Slowed down significantly during Suzanne and Martyn visit.
Friday 1st April 2016 - 2
Took first morning tingle pill. Tingles slightly better.
Saturday 2nd April - 2
Felt a bit head weary all day.
Sunday 3rd April – 1
Monday 4th April – 2
Tuesday 5th April - 3
Felt miserable all day, had bad feeling in fingers, swallowing was difficult and hearing unbalanced.
Wednesday 6th April - 2
Headway in day, Claire and Jay visited - was very nice - was up until 1AM.
Thursday 7th April - 1
Bad tingling in fingers, but otherwise felt well
Saturday 9th April - 2
Sunday 10th April - 1
London trip was excellent and felt really good all day.
Monday 11th April - 1
Was very positive and quick to dismiss any negative feelings. Felt like the benefits of the List neon trip was lasting. Ears becoming quite bad though.
Tuesday 12th April - 1
Visit from Bev, PB on rower. Felt positive and good all day. Was knackered at 9pm.
Wednesday 13th April - 2
Overdid it at gym with Headway - made me tired for remainder of day.
Thursday 14th April - 1
Friday 15th April - 1
Felt reasonably good all day, especially in evening.
Saturday 16th April - 1
We had outside fire, had no bad moments all day.
Sunday 17th April - 1
Another good day.
Saturday 23rd April - 2
Out shopping for a pushbike.
Sunday 24th April - 2
Went to Barlaston.
Monday 25th April - 1
Picked up bicycle
Tuesday 26th April
Ran out of Propanalol.
Wednesday 27th April - 3
Did too much snooker at Headway that troubled my eyes.
Gave up on gym fitness after bike as I was knackered.
Felt a bit lousy.
Friday 29th April - 1
Saw Physio from complex case.
Felt much better and far more positive all day.
Thursday 28th April - 3
Felt lousy all day.
Finger tingles came back in anger, also more lip tingles.
Saturday 30th April - 1
Felt good all day - enjoyed it.
Sunday 1st May 2016 - 1
Trip to Madame Tussauds in London.
Really enjoyed the day and felt really good.
Monday 2nd May - 1
Felt well all day.
Tuesday 3rd May - 1
Felt well all day.
Wednesday 4th May - 1
Didn't go Headway 'cus thought Olivia would be having eye test.
Thursday 5th May - 1
Felt generally good apart from finger and mouth tingles increasing.
Friday 6th May - 1
Felt generally good and did work on Olivia's bike.
Finger and mouth tingles increasing.
Saturday 7th May - 1
Really good day. Fixed Olivia's bike and did lots of odd jobs. Didn't really have bad moments, tingling still on the rise though.
Sunday 8th May - 1
Felt very good, even some glimpses of "normal" during of the day. Saw Suzanne and Martyn.
Monday 9th May - 3
Didn't feel good, disappointing.
Went to Brum for psych tests.
Tuesday 10th May - 3
Still not feeling well, drove to Worcester in evening.
Wednesday 11th May 2016 - 1
Worcester psych tests.
Felt reasonably OK.
Thursday 12th May - 1
Flew to Portugal.
Saw Jeanie and Horst in evening and felt well.
Friday 13th May - 1
At Alvor and felt really well.
Saturday 14th May - 2
Went to Pintadinho.
Felt a bit cloudy in morning.
Sunday 15th May - 1
Last full day in Portugal - very good.
Found out about dad.
Monday 16th May - 1
Trip back went well.
Tuesday 17th May - 2
OK, but not as great as I thought I'd be.
Wednesday 18th May - 2
Not bad, just a little fuzzy.
Thursday 19th May - 2
Did fast 2K on rower, felt I suffered for it.
Friday 20th May - 1
Dealt a bit with Bradwell regarding dad's funeral and felt better for it.
Saturday 21st May - 2
Sunday 22nd May - 1
Went out on bikes.
Monday 23rd May - 1
Felt better all day. Trying to maintain positive attitude.
Tuesday 24th May - 3
Disappointingly head pressure, surprising after two good days.
Wednesday 25th May - 2
Headway. Felt OK.
Saturday 28th May - 3
Felt terrible mentally.
Sunday 29th May - 2
Still zombie-field but not as bad.
Monday 30th May - 2
Still on 3 Pregablin.
Went to Mow Cop with Ruth and mum which was lovely.
Tuesday 31st May - 2
Still not right yet.
Sue came up today.
Wednesday 1st June 2016 – 2
Thursday 2nd June - 1
Friday 3rd June - 2
Saturday 4th June - 1
Biked at Carsington Water. I got anxious and didn't wanna go but Ruth was quite firm about it. Fantastic that we went, I really enjoyed it immensely and felt really well and positive about the day.
Sunday 5th June - 2
Didn't do much but I felt a bit strange all day. Hopefully due to recovery from big day out yesterday.
Sunday 10th July 2016 - 4
Had Olivia round. Felt OK, though it was miserable weather and we did very little. I did an easy rowing 2K and a little bit of running on treadmill. Felt bit better after doing it.
Monday 11th July - 5
Felt mentally miserable all day, don't know why. Went to gym and was unable to do much good work. I didn't feel bad, just hard to be motivated.
Tuesday 12th July - 5
Didn't want to do anything all day, didn't venture out at all. Felt a bit low all day
Tingles in left hand fingers are getting worse, and eating tingles and swallowing problems more apparent over last week compare to a couple of weeks ago.
Wednesday 13th July - 5
Did bike ride during morning as part of going to mum's. Quite enjoyed it, but it was much harder work than expected.
Gill visited and did the NOT-TENS thing.
Thursday 14th July - 5
Did quite a lot of phoning in morning with British Gas, etc. and it took a lot out of me mentally - not at the time, but perhaps an hour later once I'd stopped doing it.
Went to the gym later, 5-7. While I was OK, after I came home I was very tired and in bed at 9:30 where I slept through to 7.
Friday 15th July - 5
Hot day, didn't do much.
Saturday 16th July - 5
Didn't have Olivia.
Sunday 17th July - 3
Went to Roaches for long walk. It was lovely. We were both knackered, I slept in car on way home.
Monday 18th July - 4
Still feeling well, though too knackered to do anything but go to mum's and back.
Tuesday 19th July - 3
31C. So hot, had a chilled day doing very little. Felt a bit positive after enquiring of IT Buddy.
Saturday 23rd July
Had Olivia and Alex round - very nice day. Felt reasonably good.
Sunday 24th July
Still had Olivia and Alex.
Monday 25th July
Rode to Bramptons and mum's in morning. Did a session at gym, surprised it wasn't tougher. Though tiredness caught me up in the evening.
Tuesday - 26th July
Did a trip to Lymebrook for speech therapist. Felt ok generally, though finger tingles are more pronounced.
Wednesday 27th July
Rode bike to Hanley for RVS check. It felt like a long slog but I wasn't unduly knackered and would like to do more of this stuff.
Gill did the TENS stuff and somehow the pulsing of the electrodes on my left hand caused my usual tingles to cease.
Did a 5k row in 2:06.4 - did huge breathing and this seemed to help. Have now set myself of a goal of 5k @ 2:04.9!
Noticed that the tingles returned after the row.
New system of scoring: 1 (very good) to 9 (terrible)
Hand (after TENS) 1
Thursday 28th July
Didn't feel with it in morning - so skipped gym which I had planned and had a really easy morning.
Forgot to update diary.
Sunday 31st July
Lovely day waking in Ilam.
Lips were really getting me down.
Monday 1st August 2016
Felt a bit miserable. Went to mum's but didn't feel like I had the energy to go to the gym from there.
Eating is becoming more of a problem and fingers a little less useful.
Felt very frustrated with lips in evening after having tea and then supper.
Decided I had to have more Pregablin despite the mental issue I have had with it.
Tuesday 2nd August
Lips seem better straight away, though fingers are no different.
Pills have caused a fuzzy head which have prevented (along with the rain) me going to the gym.
Did a fast 1:57 2k session on rower with no negative effects.
Beat Ruth at Scrabble.
Wednesday 3rd August
Went to see Leslie with Ruth.
Felt good walking back from mum's - almost "normal".
Did a 2k on rower at 2:01 - slightly disappointed, but then probably expected too much after my good 1:57 yesterday.
Thursday 4th August
Didn't do any exercise due to Mark visit and Olivia coming at 2, etc. Didn't feel bad or good, bit of an indifferent day after the good yesterday.
Arranged to visit the air ambulance manager.
Friday 5th August
Quiet day, still no gym or exercise. Got Olivia at 2pm and went on nice walk with her.
Upping dose to two Pregablin pills is not having any negative mental effect - pretty confident taking it now.
Saturday 6th August
Trip to Llandudno.
Lovely day - once we got there!
Felt very tired in evening.
Sunday 7th August
Didn't do a lot.
Monday 8th August
Felt good. Did a bit of stuff like replying to BG, engaging with solicitor over Apedale.
Had a clear head for most of the evening and felt quite positive mentally.
Sunday 14th August
Felt really good. Olivia was fantastic.
Monday 15th August
Still OK really - did a nasty hill climb in Clayton Woods which was satisfying.
Wednesday 17th August
Saw Gill who did the TENS work - tingling disappeared. Re-appeared a little bit after hard rowing (5k @ 1:55).
Felt rather positive, but after effects of fast row did me in in the end.
Thursday 18th August
Deb dropped Olivia off.
Had a bit of a miserable day - think it was a hangover from the rowing yesterday
Tingling was back with some force and I felt generally under the weather.
Friday 19th August
Saw Dr. Ball with Fran and agreed to stop Pregablin.
Perkin was very good all day.
Felt generally better and more positive all day.
Saturday 20th August 2016
Trip to London.
Madame Tussauds & Ripleys 'Believe it or Not'.
Felt worn out after a bit of a walk in Hyde Park.
Monday 22nd August
Tuesday 23rd August
Hand and lips feeling worse.
Didn't feel like doing anything
Passed up an easy opportunity to go to the gym.
Thursday 22nd September
Went to acupuncture consultant. Before consultant hand was 7 - uncomfortable; after it was much better - 2. The first acupuncture was focussed on my fingers - but there was also some relief for my lips.
Positive effect lasted overnight.
Friday 23rd September
Benefits of acupuncture had worn off in morning.
Had MDT meeting and was knackered and to bed for 10.
Saturday 24th September
Lips in morning felt numb, tingly before having eaten.
Hand also a bit worse than usual.
Sunday 25th September
Nothing much to report. Was very tired and fell asleep in summer house.
Thursday 6th October 2016
Acupuncture 1st session.
1 hour after the session, then back to as before.
Lips didn't get any improvement.
Friday 7th October
Was knackered and slept about 3 hours at mum's.
Tuesday 11th October
Acupuncture did a good job on hands, but nowt on lips.
Went to gym straight after which seemed to eliminate the acupuncture advances.
Thursday 13th October 2016
Acupuncture helped hand - and lips a tiny bit.
Went to Polish lunch and not gym and felt a little benefit with my eating.
Fingers OK, then tailing off at bedtime.
Tue 7th Feb 2017
Simple fusilee pasta was a tiny challenge. Focus on the fact that extended discussion / testing doesn't result in fatigue in the same way it did in the early days of recovery.
Sunday 21st May 2017
New system of scoring: 1 (bad) to 5 (good)
Monday 22nd May
Tuesday 23rd May
Wednesday 24th May
Morning comment: Slept right through the night - a first for maybe a year. Finger tingles felt lesser - am I getting a placebo effect?
Felt generally more positive about myself in the morning. First time I've actually had a positive thought about epilepsy!
Breakfast of bagels and then Shreddies felt a tiny bit less uncomfortable on the lips than usual.
Evening comment: I've felt really positive today, it's been excellent. I feel a lot more confidence in my likelihood at a decent recovery, which among other things seems to be reducing my anxiety. I saw Mohinder this morning and it went really well, I then saw Gloria this afternoon to help her with her phones and that also went really well. To top it off I did a "post recovery PB" for 5K on the rower... the only way is up. I'm so happy about the rower as I'm now able to row really rather hard and physically knacker myself and not get a load of "mental" side effects which was happening previously.
Thursday 25th May
Comment: Slept right through the night - again. Another positive day as IT buddy and I want to do a bit more. Rowed very hard sprints again with no problems.
Tingles have remained at 3.5 which I am happy about.
Friday 26th May
Comment: Didn't row, but slept through all the same - indicating it is the medication and not simply exhaustion that is helping my sleep. Head still better.
Saturday 27th May
Comment: Head felt well in morning. Another good day.
Sunday 28th May
Comment: Another good head day. Possible improvement on dexterity. Mouth Tingles while not reducing in sensation level are seemingly resulting in less discomfort.
Monday 29th May
Comment: Another very good head day. Either dexterity is improving or I am less distracted or feel less debilitated by it.
Tuesday 30th May
Comment: Head felt a little bit fuzzy, but persevered and had a good row anyway.
Wednesday 31st May
Comment: Did sub 2min 5k on rower. Head felt ok all day, so well that I decided to push hard on the rower.
Thursday 1st June 2017
Comment: Had a really good day
Friday 2nd June
Saturday 3rd June
Comment: Head still feeling well.
Sunday 4th June
Comment: Another really positive day - the only way is up!
Monday 5th June
Comment: a good day.
Tuesday 6th June
Comment: a very good day.
Wednesday 7th June
Thursday 8th June
Comment: Didn't have much of a break in the day and started to feel rather tired about 5pm. I know it is early days, but I get the question of whether the potential benefits are not worthwhile given the side effects.
Friday 9th June
Comment: Felt strange in morning, like the upped medication is really having an impact on my clarity - not enormously, but observably.
Had notification from Met Police and felt very upbeat about it, very excited about possibilities.
Saturday 10th June
Comment: Feeling like I am coping better with the increased medication. Had a very good day, feeling positive all day.
Sunday 11th June
Comment: All positive, all day. I continue to feel mentally better. Didn't get any tiredness whatsoever. Finger tingles have marginally improved.
Monday 12th June
Comment: I am getting involved in the Met Police engagement (by email) and have really enjoyed it. My mouth tingles are remaining the same and a tiny bit troublesome during my pate sandwich at mum's - but somehow I am dealing with it better because I feel things are on the up.
Tuesday 13th June
Arrive in Kefalonia
Comment: I feel fantastic. Had a wonderful start to our holiday. Everything's just perfect. Even went for a reasonably lengthy swim with no negative head concerns. I can never express the love and adoration with which I hold my darling Ruth.
Wednesday 14th June
Comment: Another fab day where I felt really well.
Thursday 15th June
Comment: I drove back from Myrtos and was very satisfied. Had a fab day and became very tired at nine. I can live with that!
Friday 16th June
Comment: Antisamos beach and Melissi caves / absolutely wonderful.
Felt good all day. Wasn't knackered until 10.30. Excellent.
Saturday 17th June
Comment: Fiscardo fab. Tough 90 mins drive back. Ended knackered but hugely satisfied that I felt very safe the entire journey. Great.
Sunday 18th June
Comment: Agostili and Trapezidi
Felt great all day. In evening we went past loud music in town and it set my head back a bit. Slept well though and was ok next morning.
Monday 19th June
Comment: A day at the hotel. Felt well all day. Mouth tingles are noticeably improving. Ran out of gas in the evening again, determined not to make anything out of it.
Tuesday 20th June
Comment: Return flight. I felt really good, at times I didn't feel far off normal. Started reading Ice Girl and found it really easy, no worry about following the plot or character development.
Wednesday 21st June
Comment: Still good. Run out of gas in evening, probably due to all the Met dialogue I was engaged in, or perhaps the holiday journey catching up.
Thursday 22nd June
Comment: Awoke refreshed for a new day. Spent a lot of time emailing and phoning about Met Police. Felt I dealt with it better - a slight dip but still good progress.
Friday 23rd June
Comment: Felt better mentally today and didn't run out of gas in the evening. Tingles are no better, so be it.
Saturday 24th June
Comment: Felt really good mentally all day - perhaps the very best during my recovery. Felt good on slippery surfaces at Trentham. Started going through some Met laptop stuff and CG email, etc.
Sunday 25th June
Comment: Felt really good again.
Monday 26th June
Comment: Nothing changed tingle wise.
Tuesday 27th June
Comment: Nothing changed tingle wise. Head has been good all day.
Wednesday 28th June
Comment: Drove to Chesterfield which went ok, then put together new bed frame. I felt ok, but was aware of fatigue so I went to bed about 5pm. I slept for 2 solid hours. I am aware of me getting fatigued easily but am able to deal with it.
Saturday 1st July 2017
Comment: had a lovely walk from Deep Hayes, my favourite day yet. Felt good all day. Got tired about 9pm, happy with that.
Sunday 2nd July
Comment: Still improvement all around
Monday 3rd July
Comment: Still improvement all around.
Tuesday 4th July
Comment: Woke up feeling clarity in head, could be a little more mentally tired - but dunno if I am over-analysing everything!
Certainly felt more mentally tired by two pm, I do feel a bit different. Me being me, I'm relishing the challenge of getting past this little slip.
By about 8pm the "tiredness" had gone, I feel like I'm now gonna cope with the dosage increase ok.
Wednesday 5th July
Comment: Still feeling better, had a tired moment in the afternoon but I carried on and it went away.
Thursday 6th July
Comment: Had a tired moment in the afternoon and slept for ninety minutes. Went for walk in Keele with Ruth and had a meal at Sneyd Arms. Felt generally ok.
Friday 7th July
Comment: Had to deal with mum's problems. I felt I did as well as could be expected.
Saturday 8th July
Comment: Had Olivia for first time in what seemed like ages. She was wonderful, I'm so proud of her.
Sunday 9th July
Comment: All good health wise for me. I slept at mum's again because of her high BP.
Monday 10th July
Comment: Very tired towards middle of day, but no other drama to report.
Tuesday 11th July
Comment: Very good day.
Wednesday 12th July
Comment: Being honest, my fingers inhibit me less than they used to
Thursday 13th July
Comment: Good, busy
Friday 14th July
Comment: Good, busy
Saturday 15th July
Comment: Good. Went to sleep for two hours at about 5pm. Haven't been sleeping beyond 4am for last three evenings so hoping that is all the tiredness is down to
Sunday 16th July 2017
Comment: Felt really well all day. Went to Formby and surprisingly went asleep about 3pm and missed Ruth's beef. All else positive though.