Expecting Times

December 21st 1978 Vicki was very pregnant our 2nd baby was due on 26th boxing day, and Vicki was concerned that she wouldn’t be here for our son Lee over Christmas.

The midwife had told things would be alright and not to worry, obviously she didn’t know Vicki very well.

This week was a busy time work wise for me today I was only local and then prep coach for early start tomorrow morning 4,30am start.

Tuesday 22nd a long day, little did I know just how long, taking a party shopping in London, phoned home couple of times check how Vicki was, reply just chilling with Jane friend and neighbor. Returned home 6.30pm, I was a bit annoyed Vicki was lying down said she didn’t feel well, Lee was playing

Then Vicki told me that lunch time she had a curry pasty followed by Castor oil in orange juice, and that she felt ok till she went to see her aunt at her mother’s and had a cup of tea, when home the pains had started, 7pm I phoned the maternity unit they said to take Vicki in.

Jane had Lee and I put Vicki into our mini, we arrived at maternity just before 8pm,i the midwife said that it would be a long night, so Vicki was prepared put into a ward nurse left. After about 10 minutes Vicki said call the nurse my waters have broken, the nurse said I don’t think so it’s too early, she looked and said she could see the baby’s head.

They rushed Vicki into the delivery room and I was asked if I wanted to be there for the birth, Vicki gave me one of her looks so I said yes, midwife said in that case you can hold her hand and support her neck, it was all over very quickly our daughter was born just before 9pm. I felt drained having been awake since 3am, but so proud to have shared the birth of our daughter with Vicki. Nurse asked if I would like a cup of tea yes please, I have never seen or had tea like it since, the nurse said it’s just what you need.

Vicki didn’t tell the midwife or nurse what she had taken that day, they were surprised by the quick birth, Vicki was allowed out on Christmas eve I was told not in the mini so her sister picked us up.

Our daughter Nikki was our Christmas gift.

HAPPY BIRTHDAY NIKKI   xxxx

 

Vicki’s 60th birthday date & last goodbye

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This was Vicki’s 50th birthday party pic                                      Nikki & myself scattering Vicki’s ashes

Veronica (Vicki) was born 21st June 1955 She was a summer solstice baby and today should have been Vicki’s 60th birthday. We celebrated Vicki’s 17th birthday on the Isle of Wight, where we lived and worked, we had been together just over 6 months and living together 6 weeks.

I remember all Vicki’s birthdays some more than others, for her 21st I brought her an Afghan  pedigree mountain puppy 10 weeks old, all legs as Vicki said she decided to call him Chez after the rebel and because of his antics.On her 30th she was diagnosed with MS what a present, birthdays after were sometimes better, her 31st and our 11th  anniversary I was away in Italy  on a 10 day tour, she wrote a wonderful letter with instructions for me not to open it till our anniversary, she even phoned the hotel where I was staying another lovely surprise I still have the letter.

After Vicki was confined to bed January 2008, birthdays and anniversaries we spent  at home instead of going out except on the odd occasion with the district nurses permission we went to see Status Quo at Cannock Chase open air concert.

Sadly Vicki passed away 25/03/13, 3 months short of her 58th birthday , we celebrated her life by releasing 58 balloons on Cannock Chase near to where we used to pic-nic.

For Vicki’s 40th in 1995 I managed to get permission for us to be allowed into the stone circle at Stonehenge, so that she could see the sunrise through the stones. We had to meet with others at a car park in Salisbury at 3am, and what a site, our first real Druids all in their attire, after what seemed a long time we were told we would not be allowed to go ant further as the barricades had been breached by thousands of. unofficial worshipers  and that it was not safe for anyone

So as this year would have meant a lot I contacted the Heritage Trust and was given permission to scatter Vicki’s ashes on a burial mound to the East of the Stone Circle, my daughter, 3 granddaughters and I drove to Stonehenge, we arrived at 8.30  scattered her ashes then back to do the tour. It was a happy time.

I still celebrate her birthday and our anniversary with flowers and a glass of wine or two. This morning my daughter and granddaughters will be here with as Ellie Mae said a cake for nanny’s day ❤

For Carers week

For 5 long and wonderful short years I was a full time 24/7 carer for my late wife who had MS,  and now  I’m a redundant carer, and I miss everything about that life that  I had.

For those who are not, for those who are and those who are daunted by the word and work of a carer. It can and will be the most stressful and rewarding time in your lives, you probably won’t be paid in cash but the rewards and feeling you have being a carer are not measured by the trappings of life riches.

Yes I miss being a carer for Vicki, to some people the lack of sleep, menial and mundane everyday tasks 0ne performs for a loved one, should be done by a paid professional, they may love their job, but you love the person.

After 5 years of a carer’s life I would like to think that I became the best that I could be, you are always fighting to get the best equipment, treatment and whatever medicine they require just to make their life a little more comfortable, they don’t ask or complain, communication can be difficult they may like Vicki give you the finger or The look Vicki was good at both, but however they communicate you love and care for them for who they are.

I never thought of it as a job or work, to me it was my chance to show how much I loved sharing our life together, sometimes I would sit quietly and watch while Vicki slept, hold her hand.

If you’ve read this then thank you for taking the time, if you’re a carer don’t be afraid to ask for help, there is a lot of support if and when you need it.

It is still a little difficult for me to put into words my role as a carer.

Oh the words of the able bodied

Friday 24th April I took my friend who has aggressive RRMS, can’t walk unaided and is visually impaired, to see her brand new built apartment. Supplied by her local housing association, described as ideal for her complete with a walk in shower.

It’s so typical of non disabled people to say oh what a lovely place, it’s perfect for you, all on 1 level, kitchen/diner so you don’t have to walk far to also the lovely shower room.

I said that she should arrange for her OT to go with her to view it, but No she will do so when she’s moved in, she is a stubborn and determined woman.

The removal men were there to look at it as they would repaint the walls over the weekend, I remarked on the shower not being a walk in, one said all she has to do is open the doors step over sill and move as she closes the doors easy

The good points are no stairs, that’s as far as I would go, bad ones the electric gates vibrate against the outer wall when opening/closing, shower room with wash basin toilet shower cubicle in a room probably 3m x 2.5m, toilet is 30cm from shower with triple doors, so you have to manoeuvre as you close them a 3-4cm lip (as they call it ).

I didn’t say much and as we were leaving the external door intercom didn’t work, builder said it will be ok.

I’ve had a chest infection for 4 weeks and just started anti biotic’s so the day she moved in I was quite bad , I phoned her 2 days later, intercom still not working so she has to keep getting up to open the door, raw sewage coming up the shower drain and flowing over the floor.

I phoned and went to see her on Saturday afternoon, she passed me the key though the window, once inside she told me the intercom still not working the room was cold, this lady always has the heating on at least 21c, she was cold the heating was intermittent, her bedroom radiator was cold. we chatted she will phone her OT on Tuesday. I had taken her some heat pads I brought from Naidex, she used all 3 on her feet most of her cloths are still in suit cases before I left I done a micro meal she asked for. At least her mother will be with her Sunday and Monday.

The Last Goodbye

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It is now 2 years today April 5th 2013 that I, my children, family and friends said a last goodbye to Vicki (Veronica). Where has the time gone? They say that time will fly by when you’re having fun, but it’s not much fun trying to adjust to living without Vicki. I admit I have had some fun times with my daughter; granddaughters, one sister-in-law and couple of friends.

Friends I’m not sure I could call some friends, when you or partner has a chronic illness, the people you thought of as such seem to disappear, they say I’ll visit, or phone and gradually visits phones calls and txt’s stop. Then they all send cards, some say I wish I’d phoned or come to visit more, or I thought that one day we would have kissed and everything would be ok, they all want to come to the funeral, then it’s we must keep in touch and have lunch or a drink, but time passes.

So the day was to celebrate the life of Vicki, which we did with food drink and talks of Vicki and a laugh or 2. Although some might say it was cut short, Vicki and I packed a lot into our 42 years together, nearly 38 of those were married life, we made love in many different and unusual places, we enjoyed our life together and I have no regrets other than Why. Was It  fate that brought us together and so it was fate with the MS, I could not have had a better friend and wife.

So it is Easter Sunday I’ve cooked roast lamb with roast vegetables baby potatoes, the vegetables I enjoyed  while listening to ANDREA BOCELLI  the cats had the lamb all 3 cats loved it. I was doing ok till “The Time To Say Goodbye” came on, as it was played at  the end of the service for Vicki.

If you are reading this than thank you, if not thank you anyway.

Have a good life don’t be afraid to do the unusual or the unexpected..

 

 

MS Life and Death

After the news of the death of Debbie Purdy yesterday 29th who died on 23rd December, I imagine that it has alarmed people who have or just been diagnosed with MS, for most with MS there are (DMD’s) drugs that can and do help RRMS, but can come with side effects.

What about the people with SPMS or PPMS? Drug trials are ongoing.

Clinicians and people say MS doesn’t kill, No but it doesn’t help, on Vicki’s death certificate it states, cause of death 1 (a) Type 2 Respiratory Failure, (b) Pneumonia (c) Multiple Sclerosis, 11 Impaired Swallow so for me the word progressive says it all, your born you die, it’s what happens in between that matters, some call it fate.

So as Vicki would say take life with a pinch of salt, enjoy your life, even with MS anything is possible.

Early this year I met 2 women who were diagnosed with MS in1974 and 1975, both were using a wheeled walker to get about, both still fairly mobile.

For those who don’t know, my late wife Vicki was told on her 30th birthday she had MS June 1985, then we were not told much about it or how it would affect our lives, other than it was suggested not having any more children.

December 28th 07 Vicki was confined to bed with a grade 4 open pressure wound 6cm x 7cm x 3cm, we were told it would heal in about 6 months it took 22 months, Vicki could not sit up and by this time we were told her MS was now chronic progressive. Her neck muscles had become weak and couldn’t support her head, in 2010 another pressure wound on her spine, 2011 pressure wound on original site, with new treatments both healed in less than 12 months, with the help of the district nurses I became quite proficient in pressure wound care.

Unfortunately time in bed had taken its toll on Vicki’s health, with UTI’s chest infections, and losing use of both arms and hands, right arm fixed at 45 degrees and left leg at 40 degrees, Vicki had Botox injections in groin, thigh and calf muscles, also in hamstrings both legs, every 6 months, the nurses often asked is any Botox left over. Constant visits from GP, physio, social worker, speech therapist Dietician and others, Vicki’s weight 6 stone, caused concern September the nurse manager came to do a health check, the result when I read it to her was not what I expected, she broke down crying, saying that’s not me I’m not like the kids. The report stated that Vicki was severely malnourished. June 26th 2012 what a game we had, she spent 5 hours lying on a trolley in A&E as no bed was available, then put on a bed 1 hour later Vicki was admitted to a ward and spent our anniversary in hospital on a nasal food drip, July 4th had a peg feed tube inserted into her stomach, I received training on the maintenance of the system and how it worked, and Vicki was discharged 2 days later.

On the news a man with locked in syndrome was asking for the right to die with help and dignity, Vicki and I talked about it at length, Vicki said it was not for her, and subject was closed.

2013 January another chest infection, March 9th Vicki was rushed to A&E spent 6 hours in Resus, intubated and taken for a CT scan then to ITC, where she spent 24 hours, the next day in HDU I was told they couldn’t do anything more for her (as in the Registrars words the MS had done too much damage) clinically there is nothing they could do. Vicki contracted pneumonia while in hospital and despite the efforts of the nurse’s doctors and physio, Vicki passed away very peacefully March 25th.

I’ve read Professor Gavin Giovannoni’s blogger, I agree with most of it, except the bit, “it only clips about 8-10 years off the average life span”.

But each to their own. My daughter was told via a medium that Vicki felt she had done enough and it was her time.

Listeningto the Spirit World

I believe that anything is possible, and have an open mind, many people visit a spiritualist or medium and find comfort in doing so it’s not for everyone, but what my daughter told me made me cry mainly because Vicki is happy again.

I went to my daughter’s (Nikki) yesterday afternoon, not stopping for dinner just a cuppa and a chat, as I was going to my local council’s Scrutiny committee meeting later.

Over a cuppa she asked me if I had a problem with my arm, (this is the conversation) I said its my shoulder and asked why, she had been to see a medium that morning for a reading, and her mom told her, (Nikki asked why I hadn’t said anything), also that I was to do more and move on. Nikki said I’ve told him he does too much and to rest more, No he needs to get out more and enjoy his life because it’s precious, and she loves us all very much

Nikki is then asked why Christmas day special is for your mom and dad, because she is smiling, Nikki laughs and said it’s personal, I only told Nikki why a few days ago.

Your mom is stamping her feet and it’s as if she‘s kicking her leg, do you know why? Yes she had dreadful spasms due to MS. Your mom says she should have talked more about her MS when you were little, and she never wanted it to turn out the way it did, but she’d had enough and was tired of fighting, and felt it was her time.

Has your dad mentioned anything about dreams? Because your mom visits him often in his dreams, Nikki says yes quite a few. Your mom had difficulty speaking didn’t she, also she had  problems other than MS, she keeps pointing to her chest, she talks about our granddaughters and how proud she is, she has had her hair done and it’s her own natural colour (red).

A friend of your mom’s with initial G, is going through a bad patch at the moment, this worried my daughter and could only think of one person so she sent a txt explaining why, the reply was yes and she told Nikki.

That’s it apart from one of us will have a problem with a door on a tumble dryer.

I might pluck up the courage to visit a medium one day, till then I’m content  with my daughter telling me about her mom and knowing they’re both happy sharing this bond.

Sharing a life with MS

January 86 Vicki was offered a job working for her sister and brother-in-law, the following year after an accident I was declared unfit for work, and later became a taxi for my family. Drop the kids at school then take Vicki to work, back home and rest before the afternoon run.

After a couple of relapses in 1990 Vicki was now using a pair of elbow crutches for short walk and a manual wheelchair for distance, this helped both of us as I could use the chair for support, when out together.

Using crutches didn’t stop Vicki and her friend going to gigs to see bands, they went by train and I would pick them up, I always took a flask of hot water and slices of lemon for return journey. One time I took them to a village near Monmouth, where they stayed the weekend I returned home, next day I had a phone call Glyn Vicki’s friend had slipped and broke her ankle, unfortunately she was sober at the time.

Sunday I drove down and picked them up, they didn’t stop laughing on the way home, telling me all about it Glyn being taken to hospital in a stretch limo.

Everything changed January 1998, we had gone to Old Trafford to see Manchester United play Walsall in the FA cup, our son went by train with friends, and our daughter went on a supporters coach with friends. after the game for some reason I missed a turn and ended up on the M62, few minutes later we had a crash in the 3rd lane, while waiting for emergency services a St Johns nurse stopped and sat with Vicki.

I stood by the car as the Walsall coaches drove passed slowly, hoping Nikki wouldn’t recognise the car, police came and dragged our car onto the hard shoulder, AA arrived they had to carry and lift Vicki into the truck, then drove us to Warrington to wait for a driver back to Walsall. I phoned home and told our daughter what had happened and we were both ok, we arrived home after midnight.

Sunday morning I was in the kitchen when I heard a thump upstairs, Vicki had fallen and was crying, she couldn’t feel her legs, I picked her up but she could not stand, we tried many times result was the same. Next morning the doctor came, his knowledge of MS was very limited, he made an emergency appointment for her to see the neurologist.

Following week we were told it was unlikely Vicki would walk again, the day after Vicki’s sister phoned while I was out, Vicki explained that she couldn’t walk, the witch as she became known said it would be best if Vicki didn’t go back to work as she was always wobbling around the office and there was no room for a wheelchair. Sad to say Vicki and the witch never spoke, after Vicki had passed away I received a sympathy card from her, it simply said she thought that one day they would kiss and makeup, and would she be welcome at the funeral, short reply No.

So we became closer than ever, Vicki was quite independent and determined, she had a wonderful OT who filled in all the forms and in 2001 Vicki’s DFG was done, she could go up and down in her lift do whatever she wanted as Vicki often said because she could. We both became directors of a charity, Vicki company secretary, and we helped set up the first shopmobility service in Walsall.

January 2008 10 years after the accident Vicki was confined to bed, over the next 5 years Vicki had 3 really bad pressure wounds grade 4, lost use of her left arm, she learned to type with her right hand after 6 months lost use of right arm it became fixed at 45 degrees, and could only use her index finger and thumb. The rehab team were wonderful also the district nurses. 2012 due to her malnutrition, weight loss and difficulty swallowing she was admitted to hospital to have a peg tube inserted into her stomach, this was the turning point for Vicki as she was a strict vegetarian, and over the next 8 months she had numerous chest infections. Then 10.30 Saturday night 9th March she was rushed to A&E, on the Monday morning the Registrar told me they could do nothing for Vicki as her organs were failing.

I’m not sure if Vicki knew, I couldn’t tell her, it was hard enough telling the family and friends, Vicki passed away very peacefully 8.30pm March 25th with our children and elder sister around her bed.

Now every time Nikki drives past the hospital with her 4 year old daughter, Ellie-Mae says nanny was there but she lives in the sky now, don’t cry mommy.

Fate and Destiny

I have just watched a film called “Dear Santa”, it’s about a woman looking in a store window when a letter is blown in front of her, she grasps it and see’s it’s addressed to Santa and reads it.

To some this is called fate.

That is what happened to me December 1971, I had sent a Christmas card to Vicki early December and not had a reply, so arrangements were made for me to spend Christmas day with some friends.

A couple of days before Christmas I had a phone call from Vicki, she told me I had a missed word in the address, she explains that she was talking to a customer whose hair she was cutting, one thing led to another and by chance or fate the card was given to Vicki.

Vicki said she had asked her parents if I could stay, and they reluctantly agreed. I must admit I was over the moon, I booked a taxi for Christmas eve, after work.

Christmas eve I packed a few things in a bag and left the hotel where I worked at 1am Christmas morning and waited for the taxi in the office, it came and I arrived at Vicki’s home at 3am.

As I walked up the drive she stood in the doorway, I will always remember her red hair and with the light shining behind her I could see through her nightdress,  We had a truly wonderful time together, her parents were quite good about me being there, although I did hear her mother telling Vicki to stay out of my bedroom that night and many nights after.

Boxing day morning It was time to leave as I had to work, as they say in life nothing is easy, I had to walk from Lichfield to Burton on Trent about 13 miles was late back and in trouble, but it was worth it. After all it was fate and my destiny.

So the 25th is the most memorable date for me as it represents the start of our life 25/12/1971 and end 25/03/2013 of my life with Vicki.

I still have the Christmas card that started it all, as Vicki kept it safe.

My first Train Adventure

My first Train Adventure

 

In early March I was asked if I would go to a Neurological Alliance Local Influencing members meeting at The Dana Centre in London.

 

I thought why not it could be very interesting.

Then I began to think about it, and over the next few days I pondered how to get there, should I drive or go by train.

 

The week before I decided to go by train, I had not been on one for nearly 40 years, and no it was not a steam train as a few people have jokingly said.

 

So on the Monday a few days before, I went to the station and purchased the ticket along with a senior rail card that gave me a reduced fare to London at peek times on Virgin trains.

 

On the morning I was up at 4am shower n shave then breakfast and coffee, the cats were waiting for food so they were fed, then time to get dressed, I’ve decided to take my newish manual wheelchair, got in the car turned the master switch on and the alarm started and that’s how I drove for the first couple of miles, alarm and hazard lights on and off.

 

Arrived 6.20am at the station parked up master switch off, saves jump start, into the lift and sat by the waiting room (step) few minutes before train came the guard  took me down the platform,

Amazed the carriage stopped by the guard who then placed the ramp and pushed me up he apologised for pushing on my shoulders I said it was ok.

 

I found my reserved place brakes on and the train set off, I set up my tablet to read draft report from the Neurological Alliance, I could not get used to the motion of the train, so stopped reading.

 

A man sat opposite me and we started a conversation and after a while we stopped talking, later he fell asleep and snored which woke him

All too soon we arrived at Euston station, people moved to get off, it was one big rush, I made my way to the door and waited and waited, just as I was thinking I’d been forgotten a porter came on a buggy, placed the ramps and helped me down I managed to get on to the buggy, porter was amazed how light my chair was.

 

I was surprised how long the platform was and glad of the buggy ride along and up the steep ramp, where he left me by the mobility assist reception, he then told me about the lift to the taxis.

 

I then went in search of food, so many to choose from I chose ham/ cream cheese croissant, again something new for me but very enjoyable then coffee.

Time to go for a taxi into the lift down and wait, taxi came no new access cabs only old ones, once in I told the driver where I was going, 10 minutes later I arrived at the Dana Centre.

 

I pressed the call button and was let in and shown to the coffee bistro, I met the lady I needed to speak to and she told me the floor I had to go to, except I couldn’t leave(no pass) so wait for someone to let me out, into the lift and made my way to meeting room.

It’s a nice building very security conscious, pass keys needed on all floors,

Once in the room I was introduced to some of the people I would be with, I young lady asked how I became involved so I explained and told her about Vicki before I had finished she cried, I apologised for upsetting her she said it was alright as it’s an emotional story.

 

Meeting started introductions I said my name and that I am a Neuro champion for the Black County Neurological Alliance in Walsall.

We were put into 3 groups and I was to go in each one.

Lunch break then back to work shops, and finally we were finished, thank you for coming, a quick chat and I left.

 

Outside I went in search for a taxi, found one then back to Euston station, made my way to Mobility Assist and asked if I could travel earlier and was told yes, on the way to the platform I brought a large hot chocolate and free wheeled  down the ramp and was pushed up the ramp into 1st class carriage, I didn’t have a drink just the free food.

Arrived back at Sandwell & Dudley station where the porter was waiting for me, he helped me off the train I thanked him and tweeted about the excellent service from Virgin rail staff.

 

In the car and arrived home very tired, had a coffee and went to bed before 9pm.

What a day I enjoyed the journey and have already planned my next one to Manchester for MSLife 2014 on 26th April.