All posts by das48

A moment in Time

Every so often I’m reminded of Vicki, and today was one of those days.

Being a nice day I went out in my power chair to a local pet store for some cat food, and on my way back stopped at the supper market,  after a few minutes I saw my daughter she was buying supplies for Sunday lunch. .

So we went round together, my word she is picky!!!! Eventually she was finished and paid for her shopping. As we were leaving she wanted some paracetamol, so back she went got what she wanted and stood by the till.

I looked at her and the expressions on her face, it was like looking at Vicki,  my eyes filled up and I looked away and smiled. So today had a special moment for me.

Advertisements

4 Years & How time flies

It was 4 years yesterday that Vicki passed away. So my daughter and 3 granddaughters  went with me to Lichfield Cathedral to light candles and write prayer cards, that done we left, although if I’d been on my own I would have stayed longer as there was a music and choir festival on.

We went outside and the girls played on the grass as others did, then as we made our way back  I did a fast getaway racing down the hill in my wheelchair, and waited for the others to catch up. I brought 2 Chinese take-away in small boxes, girls  wanted chocolate ice-cream, and we sat by the Minster Pool, afterwards  went to The Faro Lounge for coffee, bit of shopping after then home, Nikki and the girls left.

On my own again cats fed, more coffee then fell asleep, waking an hour later, just lately I’m getting tired a little more, must be (all the exercise I’m getting), before 8.30 (the time Vicki passed away) I switched on the lights in the garden and lit some candles, at 10pm lights off candles out I went to bed, I even remembered to alter the clocks.

Sunday afternoon I watched some recorded programs, The Best of Men, Hachi a Dog’s Tale ( Vicki loved this film) then My right To Die-Debbie’s Story, this is something Vicki didn’t agree with. I told her that she would live to spite me, how I wish it was so but sadly it wasn’t to be. They say with MS no 2 the same, well symptom wise  I have to say yes,  speech, swollen purple feet, painful multiple leg spasms’  and the way they both sat in the powerchair, not the weight loss, as Vicki was fed through a Peg in her stomach, as she couldn’t swallow (Dysphasia).

By this time Vicki didn’t have a say how her life would end, the last 12 months of her life had been a struggle, several chest infections Pneumonia and UTI’s, then seizures, into hospital and ITU on life support, and being told that the MS had damaged  her internal organs and would cause them to slowly shut down. I don’t know if Vicki new how ill she was, I certainly couldn’t tell her, it was bad enough telling family and friends, so I always tried to smile.

So now I often look back and smile thinking of the many happy memories I have, even telling her how and what I’m doing, especially when I go sit-skiing, some call it 3track, I like to think she is with me, That’s Life.  Carpe-Diem

 

 

My Inroduction to Adaptive snow sport

My introduction to sit skiing was quite by accident, I went to Tamworth snow dome to see if I could manage the toboggan run, answer was no. One of the staff suggested I try sit ski and gave me a leaflet for adaptive snow sports run by DSUK, I read it and phoned them gave my details and booked my first lesson for my 67th birthday, a treat to myself, the day arrived my instructor was Duncan, I completed a form then instructions over off we went. Over the next couple of months, I had 4 more lessons plus a 3-hour group session.

The 2nd week in February I had a 4-day break in Aviemore, it was a long drive in my new car but so worth I had a fantastic time. Trying to describe to a none skier the feeling and exhilarations you get when skiing down a slope on a mountain is like watching paint dry, I’ve been told by someone who skis that when I talk about adaptive sit ski my eyes light up

After 5 months on a bi-ski and my last lesson with Paul Williams, I asked if I could try  mono ski, Paul said yes and to book last lesson on a Thursday, which I did.

My first mono ski lesson started near the bottom of the slope, I felt very easy, so different to a bi ski, so more technical have to learn again. I painfully found out base of the slope is very hard, compacted snow and ice, the next day I went to the Urgent care at my local A&E, tissue round my right shoulder and collar bone very swollen hardly move my arm, after some prodding and X-rays I was told nothing broken, just severe bruising. I had another lesson the next week so 2 days before I purchased some body armor, on the day I took out the chest and back protection, kitted out and into the mono ski, the lesson went fairly well I fell over a few times and didn’t feel it well hardly, that is until I hit the side barrier, and another visit to UC care next morning, left side chest very painful, bruise showing. I was greeted with the words didn’t you come here last week a skiing injury? I smiled said yes it’s my ribs this time, checked by the nurse a little prodding and told nothing broken and could take a while to heel. I’ve had 2 lessons since with 1 more on 26th May, I even tried wheelchair basketball on 21st, a 2-hour workout

Yes, there’s life in the old dog still.

A big thank you to Paul Williams, volunteers and the team at disabilitysnowsport.org.uk

CARPE DIEM (seize the day

Hard to believe it has been 3 years since Vicki passed away time seems to have gone by so quickly. Every day I’m reminded of her in some way, like the saying carpe diem. (Definition of carpe diem; the enjoyment of the pleasures of the moment without concern for the future.)

Recently my 5-year-old granddaughter Ellie Mae asked me why I went to Scotland in the snow and did your wife like the snow. For some reason she calls Vicki my wife instead of her nanny, I think it’s because her other nanny died last year, but she will often say that she has 2 nannies that live in clouds in the sky.

Occasionally I tell them a little about Vicki, like on boxing day 1982 we went to a fiends house I pulled our daughter on a sledge in the snow, and much later and after many drinks as we were leaving I picked Vicki up put onto the sledge and push her down the hill screaming (spontaneity) and yes she forgave me eventually.

This brings me to the title, I’m sure she would be happy for me as Vicki would often say seize the day, be impetuous like you used to be, so for me the time was right I had the opportunity to go to Scotland for 2-4 day’s sit-skiing, my new found hobby, it was a long drive in my new car to Aviemore but so worth it and I had a marvelous time, I’m already looking into next winters break perhaps somewhere further afield who knows.

I had another sit ski session with Paul on Wednesday, afterwards he asked if I’d fill in a short questionnaire and a video of what skiing with DSUK means to me. It’s the feeling of freedom wind in your face as you ski down a mountain and if you fall over you get back up and do it again, and feeling like everyone else, no one is different you are all there to have fun. I have more sessions planned over the next couple of months, I’m getting quite good even if I say so myself, there’s life in the old dog still.

A big thank you to Paul and the team at disabilitysnowsport.org.uk

Mother’s day remembered

March 9th 2013 11pm my wife was rushed to A&E and 4.30am Vicki was put on life support, and taken to Intensive Care. At 9am the consultant talked me through what had been done and what couldn’t be done to help Vicki survive.

Sadly, with the chronic PMS, lack of mobility, numerous chest infections and being confined to bed the last 5 years had taken its toll on her internal organs, he said if her heart stopped clinically there was nothing that could be done so the decision was made to take her off life support, so the process started.

So 10am on mother’s day when our daughter arrived I had to tell her, it was highly likely that her mother would not survive and was a question of when not if, but not to forget her mother had been fighting for a long time and didn’t give in easily.

Vicki came round in HDU 24 hours later, sadly she gave up the fight for life 15 days later.

This was 1 sad day out of many good and very happy memorable days.

My granddaughters said they’ve all made cards for their mommy, because they love her very much

So please for those who have a mom, give her an extra hug or 2 or more.

 

 

Day 2 & 3 SIT-SKI then Home

I had a better night’s sleep, woke at 5am looked out of the window no snow, decided on a coffee then a 2nd coffee. Hour later I looked out the window, snowing heavy couple of inches outside already, just hope there’s not too much on the mountain road.

A quick shower got dressed in ski cloths so I can have an early start, 8am now for a full cooked breakfast pot of tea, and away at 8.45. Arrived mountain car park 9.30, a little scary in places temp down -6, but road is clear except for the last mile. Was about 8-10 inches of snow up here I parked up wheelchair out sat at entrance waiting for Instructor. A little late we boarded the Funicular train to the top 1,097m.

Transferred from chair to sit ski, it’s not as cold and windy as yesterday, moved away from the entrance and off downhill for first run. Being able to see feel and here the fresh snow is unbelievable and exhilaratingly, 4 minutes down and 7 up not including putting the harness on to go back up. Second run this took 14 minutes because I hit some ridges I was off center in the seat, so stop reposition myself and away, this was a long run, back up on zip line harness put away and into third different run down , back up for final run quick chat with a couple of skiers, check leg restraints final run is called The Gun Barrel, narrow slopes each side and go faster snow, get as many tight turns as I can underneath the train tracks and stop at station half way down, board train up to the top and stop for hot chocolate before heading back down.

Chat on way down talked about possibility of coming back before end of snow season in April, told to keep an eye on website as fully booked till April 5th, said quick thank you as he had another lesson.

I pack away and headed down the mountain, halfway turned round went back, wheelchair out and into the lodge off car park for lunch. Left at 3pm back into the village brought some presents for the girls, topped car up with diesel, back to the Inn.

A couple of drinks hot chocolate then early night, long drive back home.

Awake at 6am shower coffee dressed pack all the gear in the car, inside for breakfast only cereal this morning, handed key in and just 1 stop to take some pictures. I decided to go back up mountain, wheelchair out onto the train going up top for a bacon roll and hot chocolate. I finally left Aviemore at 11am,

Journey back home wasn’t too bad, caught up with traffic south of Manchester arriving home 6.40pm, tired and aching, but it sure was worth it.

A Short Break in the Highlands

Day1

Monday I googled my trip to Aviemore early next morning, and I thought ******* that’s a long drive, from Glasgow it’s still about 3hours. Still I have my new car all topped up with diesel.

It’s 3am coffee then showered dressed car loaded up quick breakfast coffee, and 5am my journey starts. I stopped 4 times 1st just hot chocolate, 2nd was a Farm Shop services loo and tea and toast, 3rd to avoid traffic and 4th at Sterling services, a traffic update for the road to Inverness all clear. The A9 I enjoyed driving apart from a camper van travelling at 45mph, limit was 60 and 50 for HGV’s, views were excellent in the distance snow on mountain tops.

I arrived in Aviemore at 1.30pm, as I couldn’t check in till 4 I headed up the mountain to have a look around car park was full but found an empty BB bay and parked up. I found the DSUK office and met my instructor David Thomas, I chose the sit-ski and it was set up for tomorrow morning.

At the inn I was shown to my room, it was as they say adequate an end to a means somewhere to lay my head, the heating was sorted. Into the village for food then back for a drink before bed, Drambuie with hot chocolate, and to bed, my god the mattress and pillows were hard. I felt really tired and my spine was very painful from the drive up, so popped the pain pills, ended up lying on top of the duvet and had couple of hours’ sleep, pity I forgot morphine tablets they will be missed.

Up at 6am shower while kettle boils then 2 cups coffee dressed in ski gear went out to the car, -5 startup and defrost, then inside for cooked breakfast, now  off to the ski Centre. Met David at entrance then lift, train to the top, wished I’d used wheelchair instead of sticks. Into sit ski strapped in over to the start, my word its really cold -8 and wind building up (was told wind chill -15+) goggles down camera on and away for 1st run of the morning.

Can feel the bumps jarring my spine, last 3 runs the wind was really building now, goggles and gopro lens keep icing up, visibility very poor after 20m low cloud and sleet, difficult to see except for dark shapes, good job David’s telling me right/left center, finished run’s now down on the Funicular train, get wheelchair and back up mountain top restaurant for lunch and hot chocolate back to the village.

Into my room 4.30 chill with coffee or 2 then bar for drinks before early bed.

 

Things that go bump in the night can be explained?

A few weeks before Christmas I was lying in bed watching the film Ghost on TV, about halfway through a vase with some silk flowers in fell off the chest of drawers onto the carpet, I thought Vicki’s spirit might be playing a joke, so I got out of bed and as I picked it up something ran over my foot I put on the light in time to see a small rodent run to the space by the lift shaft.

I remembered the night before hearing some lite thuds in rook below, (no carpet downstairs its easier for wheelchair) Willow (cat) sometimes brings in live playmates and this was one that got away from him. Over the next few days or so me and the 3 cats saw ratty as soon as it stopped making screeching noise cats left it alone, it then moved into my new kitchen (big mistake) it went behind tumble dryer, fridge-freezer and climbed up heating pipes under the oven unit, so off to B&Q for traps. Back home traps set with chocolate, things put back holes for central heating pipes filled, I sat in front room with a coffee less than hour later I heard a loud snap the trap was sprung and ratty was dead.

Christmas eve I put a few drops of Vicki’s perfume onto the silk flowers in the bedroom and top of the stairs for when I came home after the service at Lichield Cathedral, Christmas morning 3am 1971 is the time I arrived at Vicki’s parents house, so every Christmas was our day, also Vicki passed away on 25th March so the 25th will always be a special day. I digress over next couple of weeks I stopped noticing the perfume, then after falling asleep watching a recording of Mash I woke up TV was off I felt or sensed something a sudden whiff of perfume then it was gone. The window was closed I couldn’t feel a draft, the same has happened with fresh flowers, just when you think it’s time to take them out I get a sudden burst of flower perfume.

Some may have an explanation, others might say Vicki’s spirit is present and watching over me, either way I don’t mind, as I’m typing this all is quiet apart from the pitter patter of the rain well more like someone tapping on the windowsill and the cats are sleeping

I have an open mind

 

A Carers Life After MS

After nearly 28 years of living with Multiple Sclerosis the last 5 confined to bed Veronica passed away in hospital where she had been for 16 days.

So what does an ex carer do, well once the funeral was over, in between fighting with the DWP regarding a fine because I didn’t phone them to say Veronica had died (I won that). I couldn’t stay in the house, to me in a way it was freedom but I felt very guilty at not having to rush home.

Gradually my life was changing, I had replied to an advert in the local hospital newsletter sent to Vicki July, and in August after meeting Jo Scott from the MS Society I became a member of a pilot scheme in the West Midlands as a neuro champion.

At the official launch I met and had a talk with the Neurologist who treated Vicki until 200, and as a result I went to a meet the scientist’s day at Imperial Collage London, and what an afternoon, not only a talk and video show but to see an actual brain cut and prepared for research, I didn’t even ask if I could take pictures.

Over the last 2 years I have met people with MS at various stages in their life’s struggles, met Clinicians, Neurologists Rehab consultants MS nurses whom we cannot do without as they are the force behind consultants, sadly like neuro’s there are not enough.

I have attended meetings many local, some a few miles away and some in London, I’ve been asked how I became involved, and have told them of our story (I can now tell it without my eyes leaking) well sometimes.

After badgering my CCG over the lack of Neurological services they put it into their 5-year plan, I was full of hope, not just for MS but all Neurological conditions. I was invited on to a STaR Group or Task and Finish group, alongside CCG commissioner, Clinicians and others at the hospital, sadly 18 months on I’ve realized that they are No farther forward, the Neurologist stayed on after his retirement and is now due to leave again, the Locum, well can’t say too much about that, and now 3 other Hospital trust are involved. I have cut back on a lot of my voluntary work to enjoy life as Vicki would want me to.

I have a friend that I met she is 33 and has aggressive relapsing MS, diagnosed 06 and now she has a live in support worker as the MS has progressed, I was sitting with her the other day, she has problem with speech and swallowing and after drinking through a straw she apologized because some of the drink was coming from her nose, then said she feels comfortable with me being there because I know what it’s like.

So what next, well I’ve had 3 lessons in sit-skiing and more to come my plan is to ski down a mountain slope next winter, and my MS friend and another wheelie want to come to the Snow Dome at Tamworth for a lesson or 2

A Christmas Morning Anniversary

Well it’s nearly that time of year again the 25th to me it has different meanings.

The first is when I arrived from Burton-on-Trent at Vicki’s house 3am, greeted with a vision of a red headed girl standing in a lighted doorway in her nighty is something I will always remember, this would have been our 44th Christmas together, the 2nd is Vicki’s passing again on 25th.

This will be my 3rd Christmas morning alone, I will be returning from the service at Lichfield Cathedral, being alone after 41 years together is something you don’t plan for, but I am one of many who have lost a loved one, so in that respect I’m not alone.

MS has a lot to answer for, although it’s difficult to think what life would have been like without it after living and sharing MS for nearly 30 years

Enough of that, it’s about celebrations of passed life memories the present, future and what is yet to happen, you can’t hug a memory but you can love many memories, so when you wake up in the morning wake with a smile, be thankful and make plans to do anything you want to, hence my sit-skiing lessons indoors at the moment, I want to go to Scotland next winter on a longer run down the slopes.

Yesterday my 3 granddaughter’s and I took 2 large cakes that I had made to the A&E at my local hospital for Matron and others on duty, while talking to Matron Ellie Mae said  my grandad’s wife (she has called Vicki my wife a few times lately) was in hospital, he has a picture of me sitting on her bed with my mommy and she lives in the sky now, I have 2 nannies in heaven, times like that it’s hard not to get upset.

Earlier this week I was reminded of the frailties of life, in a card from friends I’d not seen for 2 years, so I phoned him, he was diagnosed with a brain tumor a few months ago the treatment is going very well and has set goals to reach, I’m hoping to go and see them sometime next month

I wish everyone who reads this a Happy Christmas and a Happy New Year