Bad

Everything aches I can't get a comfy position and my stomach is so painful I have tears. Daughter is out. I'm lonely.

Bad

Stabbing genital pain, still heavily menstruating, soiled, ankle back shoulder pain, headache, itching, dehydrated.

Good

Glad to have non-dx concerns to baffle me parenting, politics and periods.

Neutral

Woken by the worst/heaviest menstrual period of all time. Surprisingly none of my usual aches and pains. Bonus.

Good

Having a lazy morning playing with blog templates no pain.

Parking Wars

At midday on 28 December 2010 some friends and family called to visit in 3 cars. 3 pensioners, 3 adults, 3 ½ toddlers. (My sister is 7 months pregnant.) I was at home with my carer, my daughter and her school friend. I have been quite unwell over Christmas. 

I was unable to spend Christmas with my family and it was important to us all to celebrate together somehow. My brother and his family were visiting briefly from Scotland and my parents have been quite nervous on the ice. This was the one day we could coordinate for 3 hours and I was really looking forward to it.

12.40 My car took my daughter’s friend home, whilst we got my parents inside. I say we, I actually watched ineffectually, whilst everyone else made busy. The street has been packed with cars all week, it’s Christmas! There have been 2 strange cars outside my house and next door for days, since before the snow, again it’s Christmas! On its return we parked my mobility vehicle further down the road, where there was room, near no 41 in the lay-by, displaying my timed blue badge to indicate that this was temporary. I know we had a lot of cars and didn’t wish to unduly inconvenience anyone.

 !3.00 I noticed, through my living room window, that a woman was marching, in a comical fashion, through the sleet and snow. It’s a quiet street and only a handful of people had braved the elements all day. I was surprised when the woman rang my doorbell as I didn’t recognise her at all.

My carer answered the door. The woman was rude and abrupt, demanding that we move the car and never park near her house again. The woman then left. I was put out by her manner and instructed my carer that I would not respond immediately as it was lunchtime when I require various procedures including hoisting, toileting and maintenance of my gastronomy tube all of which whilst hosting a family get together.

13.15 The woman returned muttering and making irate gestures as she walked. This time when she rang my doorbell I moved my chair to the door. She was extremely rude and threatened to smash my car if I did not move it. I said I’m sorry but no. She left murmuring unintelligible threats.

13.20 A large thickset man came to my door. With some trepidation I went to see who he was. He again asked if the car could be moved. He was extremely polite and I agreed. As he left he became insulting saying that I had better move it. The threat was implied.

13.30 My carer went to move my car. The woman came out of number 41 and started to shout at her insulting her driving, threatening to turn over my car, calling my carer a blonde trollop. On hearing the altercation my Brother in Law went out. He stood some way back so as not to further antagonise. The woman was behaving in an intimidating way towards my carer who is a young girl in her early twenties who certainly didn’t sign up for this kind of abuse. The woman approached the driver’s window. My pregnant sister attempted to calm the woman down and the woman turned aggressively towards her. My Brother in Law advised the woman to go back inside before her violence was reciprocated. She threatened to see to his car and called him a ginger freak. She was pointing at a car that was nothing to do with my party.

My carer moved my car but to date number 41 have not moved theirs from where it was behind mine. I am confused as to why the urgency if they had managed anyway. Having parked my mobility vehicle at the other end of the street near the church we all returned to number 47 and resumed our festivities. When everyone had gone I remained anxious for my security. My mobility vehicle is a lifeline and I am in no fit state to defend myself against a clearly explosive but able bodied woman.  

                                                          

Bad

raging headache too hot dehydrated back ache foot stuck on one side ankle hurts

Good

Visitors for three hours. Amazingly tired but amazingly happy. Took Voltarol at 5 for backache - works.

Bad

Woke twice postural pain and soiled myself. Catheter stoma really painful. Blood clot in urine.

Neutral

Fairly stuffy nose but otherwise fine.

Neutral

Fairly restful night. Woke once with cramps. Friend moved my legs and I went back to sleep.

Neutral

Taking it easy. Sleepy but not fatigued.

Good

Still drunk and happy.

Good

Drunk and happy.

Neutral

Full of a cold but the added bonus of excited daughter at Xmas was that she moved my aching legs.

Bad

Really wanted to spend Xmas eve with my daughter. Slept nearly all day. Can't keep my eyes open. Bed.

Love Note to Mytobii

Dear eye gaze system,  thank you from the bottom of my heart, thank you for changing my life.


Before you came along, I felt empty inside. You filled a cavernous and lonely void in my life and I can never thank you enough for being my voice and my contact with the world, unconditionally there for me. (Apart from the broadband contract condition and conditions of internet use...  actually there are quite a few!)

In his essay, 'Night' Tony Judt writes of how MND affected him. I am at the same stage. 
By my present stage of decline, I am thus effectively quadriplegic. With extraordinary effort I can move my right hand a little and can adduct my left arm some six inches across my chest. My legs, although they will lock when upright long enough to allow a nurse to transfer me from one chair to another, cannot bear my weight and only one of them has any autonomous movement left in it. Thus when legs or arms are set in a given position, there they remain until someone moves them for me. The same is true of my torso, with the result that backache from inertia and pressure is a chronic irritation. Having no use of my arms, I cannot scratch an itch, adjust my spectacles, remove food particles from my teeth, or anything else that—as a moment’s reflection will confirm—we all do dozens of times a day. To say the least, I am utterly and completely dependent upon the kindness of strangers (and anyone else).

He goes on to say that in this 'cockroach-like existence,' night ' is, like the disease itself, incommunicable.' 

My Mytobii,  you make everything communicable. 

C10, I want to spend the rest of my life with you. I want to wake up to you every morning. I want to hear you whirring while you're downloading films. You are my comfort during those interminable nights. When I am trapped inside my own head, you are my outlet. The type of 'locked-in syndrome' associated with quadriplegia is truly horrific to imagine. Julia Tavalaro writes of her experience of 'locked-in syndrome' in the book, 'Look Up For Yes' 

Here I lie in my bed

Just as if I were dead 

Hoping wishing Hallelujah praying

That my last breath will be my next 

You offer me a pass-key to escape and allow me to dream of many breaths to come, assisted or not. 

Thank you. 

You make my life complete . You make me feel like a valid human being with much to offer and a means of expression. I went shopping with you and picked out a beautiful gift for my daughter, I can't wait to see her face on Christmas morning. With your help, I thanked the postwoman who brought it. 

It is said that the way we communicate with others and with ourselves ultimately determines the quality of our lives. Thank you for enhancing the quality of my life. 

Sometimes I can laugh so hard I cry; you let me share the joke with friends.

See also http://t.co/onz7xnO






Listening to 
YouTube - Cosmo Jarvis - Gay Pirates

Bad

Trying out new splints. Sudden agony. Back pain pales into insignificance.

Good

Still snuffling but feeling quite jolly. Energy levels up.

Neutral

Oxymetry test all night. Ironically the best night's sleep I've had in ages.

Neutral

Respiratory clinic all day. Shattered.

Respiratory Appointment at Wy Hospital

Blood gas test normal. Dr C read Rachael's notes and said that he understood her effort in breathing. He said that although blood gas tests are consistently normal, the oximetry test indicated fluctuations. He ordered an overnight oximetry test. Sarah setup the machine and gave it to Rachael to run the test overnight. Depending on the results of the test, Dr C will call Rachael in to provide Bipap. Another appointment to be arranged for 2 months time.

Bad

Up for hours. Can't move. Everything hurts.

Bad

So tired!

Bad

Head, back and legs hurting. Can't get my breath. Need to move.

Good

Clean, fed, entertained and exercised.

Neutral

Well rested but a bit concerned I might be coming down with a cold.

Good

Still tired. Still glowing from last night.

Bad

Slept through til 1pm. Shivering. Headache. Struggle to breathe. Blood in urine. Very tired.

Bad

Headache, choking. Dehydrated. Leg and ankle cramps. Runny nose. Disorientated.

Bad

Fatigued. Nose running, choking. Finding it hard to concentrate.

Bad

Woken up with foot cramps and back and neck pain. Dehydrated. Had soiled myself.

Good

Had a brilliant hydro session. Feeling really relaxed.

Hydro

Katie went through full range of motion exercises with Rachael, focusing on all joints which were additionally stiff. 

Bad

Foot cramp. Ankle painful. Dehydrated. Dull headache.

Good

Slightly breathless but catheter working well.

Bad

Shattered and very shaky, choking in the night scared me.

Email exchanged with Occupational Therapist

Email was sent querying when situation with front door would be resolved.


Debbie replied saying she will continue to chase up situation with front door.

Visit from Physiotherapist

Kathryn brought "Leder Boots"/ foot splints. She showed Rachael how to use them and when the best time to use them would be.

Good

Eating yogurt, clean, hydrated, reminiscing listening to the velvet underground.

Bad

Cystitis like pain, gunk from both stoma. Itchy groin, can't move, cramp, heels hurt.

Good

Sleepy after attending urology clinic for 1st catheter reinsertion, old one blocked.  Draining well now.

Catheter Change at TG Hospital

Catheter tube was changed to a size 16 silicone tube. An outpatient appointment was made for the next catheter change on 22/02/11 at 1pm.

Neutral

Have defecated but at least I'm no longer constipated.

Good

Went out, socialised. Fairly tired but not fatigued.

Bad

Woken up with cramps and positional pains. Head thumping. Generally not a good time.

Neutral

Totally shattered. Neck pain but my daughter and I are decorating the tree so I'm happy.

Not Nerys Hughes

Wednesday 8^th December 2010

My urine was slow and I had pain in my bladder.

Thursday 9^th December 2010

3.15 am I awoke in extreme discomfort.

6.20 am My carer got me out of bed. The night bag had very little in it but what was there, was dark orange and pungent.

8.30am My leg bag was empty. I urinated from my urethra. (In the hoist, all over my carer. Sorry E!)

11.00 am My carer changed my leg bag and noted shards of a crystallized substance on the catheter.

Friday 10^th December 2010

The catheter was still blocked. I emailed the Urologist who expedited my catheter change to next week and recommended that the District Nurse effect a bladder wash in the meantime.

I was really impressed with the Urologist's response. Email ftw! 

My carer made an appointment for the District Nurse to call the next day, for an am appointment.

Saturday 11^th December 2010

The District nurse arrived at 12.23pm

She introduced herself as K? (I didn’t quite get her name.)

She came in and took her notes out. She read aloud that I have a peg feed!  I pointed out that it is a rig not a peg. You will recall the trouble that I have previously had about this issue. (Rig Problem) 

She seemed to ignore me so my carer interjected, repeating what I had said.
My voice is weak and muffled at the best of times, so it is perfectly possible that she didn’t understand me but my carer was clear. Even if it is difficult, I would rather people speak to me , not directly to somebody else about me. I prefer to communicate through my eye gaze computer but with a little patience my speech is intelligible, it is just quite tiring for me. I could not get the district nurse to pause for long enough to direct her to my eye gaze.

K? maintained that I would have been referred to her, to have my balloon water changed weekly, if it was a rig. She told me that my peg only needs changing every month. I repeatedly explained that I have no balloon or peg and attempted to explain the pig tail but she ignored me and spoke over my already weak and desperate voice. She insisted that her eight years experience and three patients with rigs proved that I had a peg. Unable to follow this bizarre line of discussion and increasingly disregarded by the District Nurse, I told her that if she couldn’t follow a fairly simple statement of fact I would not allow her to perform a procedure and asked her to leave.

She evaded my request and continued to tell me that it was a peg and not a rig. I urged her to leave several time, at least ten, becoming progressively more distressed and anxious.

When she finally agreed to leave instead of going she began to make notes. I asked her not to and that I wanted her to leave my house now. She demanded the name and details of my carer. I told her it was none of her business and insisted that she should go. At this point I felt quite panicky. She prevaricated and stood her ground. I moved around the room, trying to catch her eye but she was looking at my carer asking about my bladder. I had to move away as my chest tightened and I began to feel light headed. My speech had become a thin scream as I attempted to shout “go, get out of my house”.

In a surreal moment the District Nurse said “I have to go now. It’s been lovely to meet you”. “No it hasn’t” I growled. She left at around 12.35pm protesting that she “really cares”. (Not enough to actually listen to me though.)

Sunday 12^th December 2010

10.30am The same District Nurse turned up at my door. I told her to go away. 

Listening to Mike Harding – Napoleon's Retreat From Wigan

Off to watch Merlin! 

Neutral

calm after a truly awful day, yesterday.

Bad

dehydrated, shattered. Pretty well slept since midday, ache, dreading the hoist. Everything hurts.

Bad

Ridiculously hot, stomach cramps, back pain, foot hurts and my dongle fell out before the end of the girl with the dragon tattoo.

Good

meds taken, washed, fed, joked with daughter. Speedy response from catheter team, booked 2 gigs, plotted the revolution on line!

Bad

Pretty much slept all day. Raging headache. Sweats. Catheter blocked. Pain at night. Urine painful and concentrate. Back ache.

Email exchanged with Dr Gu

Rachael sent an email to Dr Gu saying her catheter was completely blocked and requested an appointment to amend.
Dr Gu responded advising Rachael to get the District Nurses to try a "wash-out" and will arrange catheter change with OPD.
Dr Gu emailed back later on saying a catheter change appointment had been set for 14/12/10.

Take a deep breath!

Tuesday 9^th November 2010. I was admitted to Hospital for a Supra-Pubic Catheter insertion. The anaesthetist was amazing. Even my inappropriate giggling (emotional lability) as he injected my spine, didn't phase him. I haven't been called bach for a good many years, it was comforting. Eventually I was given midazolam and sedated. The anaesthetist explained the added risk, inherent in sedation, for patients with MND. I had every confidence in him.
Both before and after the procedure, the Respiratory Team under Dr. B put me on a Non Invasive Ventilation Machine ( NIV ). This afforded me enormous relief.

Ordinarily I struggle with extreme tiredness and headaches. It takes such an effort to breathe in and out that I am exhausted and fatigued before I even attempt to do anything else. I do not feel the benefit of a night’s sleep and wake already feeling shattered. When I am tired I have a weak gag reflex, causing me to choke frequently. I also find it difficult to speak or use what little mobility I have left, including control of my power wheelchair or Eye-Gaze computer. Breathing is effortsome and tiring. Often in order to catch a breath I need to jerk my head backwards. As well as being dangerous, this places strain on my neck muscles. I already have a neck brace to assist in holding my head up and need to avoid unnecessary trauma.

When I used the NIV I did not have to make the effort to breathe. I was able to relax and woke feeling refreshed and strong, in a way that I have not felt for a very long time. This effect lasted for a good few hours after a relatively short session of less than an hour.

The only other time I feel anything like this effect is being driven in the car with the windows down. This effect however only lasts as long as the car journey and is a poor comparison.

Despite the results of my Blood Gas Tests being consistently within acceptable parameters, I felt such benefit from the NIV that I would like the opportunity to use one at home. I am confident that having access to an NIV would greatly relieve a number of my symptoms. Used regularly, perhaps overnight, I should wake feeling refreshed and energized without the sluggishness and headaches that I currently experience. With an NIV at home I would also be able to alleviate symptoms when my breathing and speech becomes laboured and difficult.

Neutral

up and cleaned just a back ache now. Looking forward to a shower

Very Bad

Catheter stoma really painful feels like cystitis. Back ache, anxiety, breathing is effortsome.

Bad

head pounding, chest tight, back aches, foot hurts

Bad

head pounding, chest tight, back aches, foot hurts.

Good

despite a fairly sleepless night, morning headache, carer issues, back from MNDA meeting feeling cheered, if breathless. 

MNDA Support Group Meeting

General discussion of MNDA. Dierdre mentioned after hearing about Rachael's effort to breathe and how Bipap was helpful whilst in hospital, but was unsuitable for home ventilation due to "normal" blood gases, that her husband Robert encountered the same problem. Dierdre said she took Robert to his GP who referred him to Wy Hospital for further tests into his fatigue and difficulty breathing. Robert was then granted Bipap overnight.

Orthotics Appointment at B Hospital

Rachael asked for staff to be shown how to put her shoes on for maximum ankle support - shown. Rachael was also told that foot splints would be ordered for her to assist with any ankle pain.

Bad

Lower back pain, foot drop ache, disturbed night, coughing, gagging.

Bad

Shattered

Good

Another terrible night but hydrotherapy has sorted me right out! Relaxed in places I had forgotten hurt.

Hydro

Rachael went through full range of motion exercises, focusing on Rachael's knees, which Katie said were very stiff.

Good

snow day and my daughter is off school, my catheter stoma has stopped weeping and my headache has passed

Gynaecology Appointment at R Hospital

Dr A asked how frequently Rachael was bleeding and how heavily. He asked as to her previous treatment. Dr A recommended Norethisterone for 21 days then a break of 5 days. He also advised of the next stages and possible procedures if Norethisterone was not effective.

Visit from Physiotherapist

Kathryn came with an assistant physiotherapist to train staff on how to manipulate Rachael's muscles and joints when she is in pain. Demonstration and practice occurred. Kathryn said she would get us a copy of a booklet detailing all movements shown.