Jenny's Blog

Remember this?

Hello, yes I am still here and alive and well (sort of!)

At the end of 2009 and part way through my 50th year I posted the following blog post. I don't imagine any of you will have been with me since then but you never know. In my next post I will update you on what if any progress I have made over the past 6 years.

'In 2010 I will ....
December 23, 2009

Hello again, long time no see. OK it's my fault I know but I have been making plans for 2010 to try to improve my self motivation, confidence and self worth. My resolutions are

  1. To start an Open University Course with the aim of eventually achieving a degree (BD Open Degree)
  2. To commence some voluntary work either with the elderly, the British Red Cross or the Hospice. I was a volunteer for years with the Red Cross so my loyalty will always lie with them but I also worked in a Psychiatric Day Hospital for a while with Alzheimers patients and really enjoyed that too. I need something which will find my SRN status useful but that I can do within my own physical limits.
  3. To go on a cruise in the Autumn in lieu of my 50th birthday in June.

What a lot of plans and I have already been in tears just filling in the OU forms when I see the word "examination!" but I must set myself challenges or I will just vegetate'

Hooray completed the swim!

At last I finished my round the island swim. It took 82 sessions to do the 65 miles but the Swim Britain site didn't even offer the chance of printing off a certificate. I would have liked that, it would have been evidence of my achievement. Never mind the record stays on the website.

Well there's good news and bad news!

Well, since I last blogged a couple of things have happened. I applied for a job as a Service Co-ordinator with the British Red Cross and actually got called for interview. OK I didn't get the job but the very fact that I  was interviewed helped me to realise I have skills and knowledge that could potentially be useful to an employer. Sadly I didn't cancel my NMC re-registration as it was between being interviewed and being informed I was unsuccessful. But I have felt useful again since what was a very tough interview.

Since then I have thrown myself in to my swimming - I am now up to about 3 miles a week and am 65% of the way around the Isle of Wight doing my virtual swim. I have just passed Ventnor and will soon be passing Shanklin Chine and in to Sandown Bay! OK I suspect David Walliams would do it all in a week and it has taken me 5 months so far but I am happy. The trouble is that I suspect the DWP and Atos will consider the fact that I can swim will mean I do not need PIP for care or mobility, despite the fact that I can't walk very far or swim to or around the shop! I have to park near the Leisure Centre and swimming does not cause any pain in my feet like walking does. My legs are quite weak though and consequently my arms should by rights rival Popeye's! As for dressing myself afterwards - I  often have to rely on strangers or the staff who know me to tell me if my clothes are awry or my dress is tucked in my knickers! Embarrassing or what?

I still volunteer at the MS charity shop in Shanklin and we recently had a complete refit which makes us well able to complete with the plethora of competing charity shops in the vicinity, a count up has shown eight in Shanklin, four of which are within spitting distance of the MS shop and café - at least we have the additional pull of the café which makes us popular, especially if it is raining.

I have just been struck down by another bloomin cold - the second in 3 months! I am not happy as I normally only get one about every two years. Whether this indicates a change in my MS and a weakening of my normally robust immune system I don't know, but I do know I don't like having colds and the chesty hacking cough that is accompanying it. Before you ask - no I don't smoke (not since 1993). Incidentally we both gave up that year which was when we got married and today is our 21 and a half years anniversary.

That's enough for now as I need a shower with the hot sweats I am suffering now - then Emmerdale and off to bed to watch Corrie.

Night All, keep warm - another frosty night coming up xxx




Maybe just one more year?!

I have had some thoughts, well, after some discussion with my Diabetes Nurse at the Surgery and my MS Nurse and Continence Nurses at the hospital, and I have decided to hold on to my registration for one more year. It has been suggested that I would be an ideal triage nurse to work at the NHS 111 hub in Newport. Now the trouble will be getting my foot in the door, as those posts seem to go to people internally - such as work injured paramedics and nurses from within the trust.

Nonetheless I will try to find a contact address and see what happens. I am also putting my profile on Linkedin although I know very little about it or how it works. Who knows though, someone might see my profile and be able to offer me the perfect part-time job here on the island. A long shot I know but without NMC registration I wouldn't be able to take a qualified position.No-one can doubt my love for the profession even if my stupid body lets me down.

From next year (as well as putting the annual fee up to £120!!) the NMC are implementing a need for re-validation information from employers as a requirement for anyone re-registering which would scupper me at the moment.

If I do manage to find a job, as well as forking out £100 to continue calling myself a 'Nurse' I will have to ensure I have indemnity insurance as well, although most employers do offer this. 

Next June my private pension becomes payable so I will definitely call myself 'retired' then - even if I am in a job.

But I need to go now!!!

Just a quick post to say I saw another specialist Nurse today for the delights of a bladder scan.

A recent issue is that of urinary urgency with occasional incontinence, I know I'm sorry if you are eating your tea! It is a problem a lot of ladies suffer from not just those with Multiple Sclerosis - ladies with weakened pelvic floors (often your fault guys!) through childbirth often suffer. Regular readers will know I couldn't have children so it is purely down to the MS this time.

Anyway, I had the scan and have a residual bladder capacity of 10 mls which means, oh joy! I can start another tablet to calm down the irritation on the bladder meaning  - that when I have to go, I HAVE TO GO NOW! On the plus side the tablet of choice - oxybutinin has the side-effect of possibly helping with the hyperhidrosis (facial and scalp sweats) and the Neuro also thinks it might help with the throat clearing, here's hoping!

Keep taking the tablets

Well, I had my appointment with the new island Neurologist on the 23rd September. Apparently my left leg is weaker than my right and I have nystagmus in my left eye. As I have had no specific relapses since 2012 but residual symptoms he said I was now moving into Secondary Progressive MS from Relapsing Remitting. This means that symptoms may fluctuate but any changes are likely to be permanent rather than go into a full remission. Between 50 - 66% people with R/R MS this occurs between 10 - 15 years after diagnosis - and I was first diagnosed in 2003. I still have continuous numbness and pain in both feet so cannot walk far. Imagine walking barefoot on a shingle beach all the time and it will give you some idea of the sensation. I also have numbness in my fingers and palms and tend to drop things quite often - at least I have got used to the hand controls in 'Bertie' now.

The Neurologist was very impressed with my typed list of 'top to toe' MS symptoms which is a good tip for anyone seeing a new doctor - I encouraged him to have it scanned in to my notes in case they need it for the DWP when I need to claim my PIP in the future. If you rarely see a doctor they are hardly likely to remember you and what worries you most. Another tip is to take a copy of your repeat prescription list so they know what medications your GP has put you on since you were last seen - remember to jot down any non repeat items you take. We discussed the research proving that Vitamin D can help slow the progression of MS symptoms - I had already seen the studies he mentioned and have been taking 15,000mcg Vit D3 daily during the winter months and loved being out in the beautiful sunny summer we have just enjoyed. MS occurs more frequently in the Northern hemisphere and even in the UK rates are higher in Scotland. I was a Night Nurse for many years and for a week at time in the winter didn't even see daylight, and like many others with MS I was born in the late spring/early summer, after a very cold winter - it is believed there is a maternal link to low Vit D levels through diet or environment during pregnancy.

Another drug he was recommending were statins - being a diabetic I have been taking Simvastatin since 2002 and some studies are indicating that statins can prevent cerebral atrophy and new lesions forming on the brain. This research paper in the Lancet describes it in more detail although with a sample of only 140 participants it was a small study.

So, that was this years appointment, he is happy to see me once a year with my MS Nurse in between and I can live with that. Just keep taking the tablets (and injections!) then.

A momentous decision and New Chapter?

Well it has finally happened - the momentous decision to no longer renew my registration with the Nursing and Midwifery Council when it is due in November, and officially call myself retired. It is breaking my heart to do so as it means that I can longer be employed in any capacity as a qualified Nurse.

I posted the following in a Facebook Group for Nurses, Doctors, Carers and interested parties - the group is called 'Who Cares' and is well worth a look if you are on Facebook - Amanda's story on there is heartbreaking. The response I have received to the post was incredible and restored my faith at least a little in some of the students currently training for the best Profession in the world.



Student Nurse Jenny Dec 1979



Letting Go

'I am posting this as I hope there are new Nurses that will carry the baton from here. I have made the decision to relinquish my NMC registration when it is due in November - not because I want to (far from it) but because no- one wants me as a Nurse now I have MS. My brain works and I have enough knowledge to function in many modern telemedicine roles, but because my body is not strong I am on the scrap heap.
I started my training in 1979 but I can still remember the names of the first deceased person I saw and laid out, the first birth I saw, the tragic man who was in so much pain he took his own life in the side room after consistently shutting the door to prevent us monitoring him, the baby that was so poorly he died so soon after birth that a doctor had to christen him as the priest couldn't get to SCBU in time (I cried then and was held up by the Sister as a true nurse - one who had a capacity to care and be seen to have feelings and not like my colleague who kept a stiff upper lip and refused to cry). The teenage Mum in labour who had been disowned by her parents and boyfriend who I stayed with after my shift to hold her hand until after many hours it was decided to perform a C-Section and I was sent home. She put me down in her baby's book as 'my favourite nurse'. All this happened during my training ( I even remember all their names) and shaped me as a person as well as a Nurse. Never being able to have children, a Nurse was who I was and the only thing I was any good at and I will now have a huge void in my life - I have been clinging on by my fingertips, and the depression I now suffer at having to let go will take a while to get over but after 25 years (on and off) of being in the most wonderful and fulfilling career maybe I have touched enough lives to be able to move on now. I hope there is another outlet for my empathy and compassion. God Bless all of you just starting out - I hope that, like me you find it more than 'just a job'.


Sister Jenny 2008




Getting there!

Well, I am still swimming 'around the island' and until the school holidays started I was going 3 times a week. I never thought that I could enjoy exercise but miss not being able to go swimming when the pool is full of children, either islanders or holidaying 'grockles'.

To this end I have now started going to Aqua Rehab, which is a bit like a water workout crossed with hydrotherapy. Unfortunately this is on Tuesday evenings at 6.30pm which means I have to rush around after my shift at the shop in order to get there. On the plus side it isn't too taxing and I stay afterwards to swim a few lengths while the showers and changing rooms clear. (The session includes the Aqua-natal pregnant ladies so there is a bit of a rush for the 4 showers once it ends). I normally manage 20 lengths before too many other people get in. I have recently brought a fitness monitor called a polar loop - this connects to my laptop and monitors how active I am during the course of the day. Most days I only manage about 20% of what I should do, but on days I go swimming it can be as much as 180%!  Not many of these devices are waterproof and suitable for swimming - mainly being like post pedometers - but this one is ideal, measuring steps and calories burned as well as telling the time and telling me when I should get up and move (cheeky bugger - my fingers on the laptop are moving frantically). 

You can connect it by bluetooth to a heart monitor but despite recently buying a tablet with a Android 4.4 Kitkat OS I do not have the modern technology to transfer the data or install the the Polar Beat App. Never mind, I still have my Polar Loop diary page and my Swimfit Dashboard. Incidentally I am now almost 27% of the way around the island now and have just passed Hurst Point having left Newport on 7th June! I successfully avoided the Wightling Ferry and Yarmouth pier - Next landmark will be the Needles!

I only wish my feet were less uncomfortable and I could get rid of the 'stones in my shoes' and 'wet sand around my legs'. On the plus side, we have a new MS specialist Neurologist who comes to the island twice a week - I have my first appointment with him next month - ironically the day before my MS Nurse appointment.

Keep well and upright peeps and enjoy the summer xx

Yes I am still Alive!

Hello, remember me? Yes, me, the Head above the crowds!

I know, I know, this is no way to run a blog but I have been busy (I think). Since the last post, no I have not taken up the bugle, but I have done a few new things.

As well as continuing to volunteer in the shop I set up the Isle of Wight MS Society Facebook page too 

September 2012 - 'Look, no hands, err feet!'

Due to the continued reduced sensation in my feet and the fact I could not differentiate between, or feel the foot pedals in Oscar (my Hyundai Matrix) any more I arranged a driving assessment at the Driveability centre in Southampton. This indicated that I was no longer deemed able to drive a manual vehicle and that I should now have to have a car with hand controls, Gulp! That meant that Oscar would have to go as although Hubby was a wonderful chauffeur and was coping with lifting the 'chariot' in and out, if I wanted some independence I would have to have a Motability modified vehicle - but first I would have to get higher rate mobility DLA! I sent off my driving licence to the DVLA with a copy of the Driveability report (confusing isn't it, DLA, DVLA etc etc).


October 2012 - DLA and a Blue Badge

Hoorah!, Having ploughed through mountains of paperwork and a form from the DWP that requires a degree to complete, I was granted DLA (Disabled Living Allowance) at medium care rate and high rate mobility - both 'indefinitely', Although that term now means something very different with David Cameron's government in their infinite wisdom believing that chronic conditions such as MS are 'curable' and that I will have to be subjected to a medical in order to claim PIP in 2015 or then about. What a waste of money which they are supposedly trying to save. It seems that they are intent on increasing the stress and indignity that people with long-term and chronic conditions need to go though in order to maintain some modicum of independence and self-respect. There have already been a number of suicides as a result of their stance on welfare and benefits and the number of people relying on foodbanks is increasing every week. Had you heard of foodbanks before now? No me either. Still I had my DLA and upon applying to our local council I was also eligible for a blue badge - well worth the £10 paid for 3 years.

February 2013 - Wheels!

Having gone through the rigmarole of  searching for a suitable car to take 'the chariot' in the back, my new Citroen Berlingo was delivered at last. It has a hoist in the back to lift the chariot in and out (hubby removed 2 of the rear seats to make additional space), a hand control lever for the accelerator and brake and a steering wheel knob so as to be able to operate the steering one handed.

Mar - September 2013 'I hate it'

Excuse the pun but I cannot 'get to grips' with driving with hand controls. I hate it, According to Driveability, I should have had some driving lessons in using them, but they said they have no-one on the island that did this so I would have had to drive a strange car in a strange place (Southampton) and incur all the ferry costs etc on top of the lessons. I managed to find someone on the island that could do the lessons in my own car, except for one thing - I needed to provide my driving licence - It is still with the DVLA! Although they were happy for me to drive the car without having lessons and Motability didn't insist on it either - it was just a recommendation of Driveability. Fortunately the patience of 'the chauffeur' meant that he would take me out to some quieter roads for some practice - annoyingly he managed to use the hand controls without any problem, although it is possible for him to drive it as an automatic/manual car using the foot pedals (wish I still could!).

It took until September for me to be happy driving 'Bertie' but I was still not happy parking it in town so 'the chauffeur still had to take me to my shifts at the MS shop and pick me up again afterwards.


September 2013 - 'Taking the Plunge'.

Upon checking the website of the local swimming pool I spotted that they hold a session for people with disabilities. I used to enjoy swimming but my heart was in my mouth as I phoned the Leisure Centre, and with my social phobia was in tears when I asked Lindsay, the receptionist about it. She was so understanding and explained that it was a very small group run by a lady called Carole who had previously suffered a stroke. I decided to, wait for it - Take the Plunge!

That Saturday I found myself paying my £2 fee as a guest and in the water. Not having swum at all for over five years, I was astonished when I managed to complete 20 lengths of the 25 metre pool. I could do it, I could still swim and I was brave enough be seen in public in a swimsuit - well I was over 19 stone, and when it feels like every step you take feels like you have shoes full of stones, as you can maybe imagine pretty inactive.

Fortunately there is a lovely big car park with disabled spaces so I was able to drive myself there - phew!


October 2013 - 'Hip Hooray!'

After 4 years of suffering terrible pain my wonderful brave Mum had a hip replacement. Dad's refusal to go in to respite care despite his respiratory disease meant she had to not only suffer his 'Meldrewitis' but her own pain until after his death in March 2012. At last she has had her operation, and fortuitously it coincided with our annual trip and stay on the mainland so I could see that she was well when we came home. Sadly it meant we couldn't spend as much time with her as I would have liked, but we were coming back again in May so could take her out then. I was also chuffed that I managed to drive the M3 stretch of the journey! 

May 2014 - Another trip to the North Island

This time we did manage to take Mum out, and indeed we took both Mums out together on one day, it was the first time they had met since our wedding garden party in 1993. My mum wanted to go to her brother and sister-in-laws graves near Colchester as she hadn't been able to drive there herself since dear Peggy's death in 2007 - it seemed an odd request but it was quite a long way and a beautiful sunny day and a pleasure to do what she wished. She treated us to a pub lunch on the way back too. We were also treated to a lunch at a garden centre when we took both the mums out together.

Norfolk Broads

The second week of our holiday was spent in Corfu! No not the warm and sunny country, but a Broads Cruiser hired form Stalham. We had a lovely week, meandering along the rivers which allowed me to test out my new camera lens and get some, what I consider to be  rather good shots of Broadland birds including herons, cormorants and ducks - sadly the marsh harriers and kingfishers were a little to fast or far away to get decent photo's of.


June 2014

Another birthday and time to take stock. I have decided that it is a better time to make News Years Resolutions on a Birthday than on January 1st when there are all the remnants of Christmas to feast on.

I have been swimming every week since last September and seeing a big poster at the pool advertising the swimfit initiative thought I would visit the website and maybe set myself a challenge. So for my sins I forked out £140 for an annual 'One Card' which allows me to go swimming in any public session and use the health spa (sauna/steam room/jacuzzi). I then selected my challenge on the swimfit site - A virtual swim around the Isle of Wight! 67 miles of it. OK it is not being sponsored and is just for fun and fitness but it will be a challenge and even if it takes a year I will do it.

Birthday treat! SNAP!

Having seen photography workshops advertised on the Isle of Wight zoo website, Mr Wonderful treated me to the full day experience, which happened to take place on my actual birthday. It was fabulous, there were only two of us and Karen-Jane Dudley who is a world renowned wildlife photographer and is also employed by the zoo. I spent much of the day laying on the ground with  my lens poking through the bars of enclosures just feet away from Casper the White Lion, Zoe and Zena, Aysha and Diamond and Rajiv the tigers. Sadly Rajiv died just a few weeks later but he will be long remembered as he starred in a film which is due to be released later this year about someone who kept an alligator and a tiger in a high rise apartment in America (where else). Rajiv's enclosure was converted into a film set which after the filming he managed to completely destroy. He was a much loved character and having been rescued from a circus and photographer and housed in a zoo in the States was dramatically transported to the Isle of Wight. According to Karen he had a absolute dislike of a certain make of camera and one poor chap was 'charged' during his photography experience when using one of that type. Guess what I was using, yes, exactly the same - a Canon! Fortunately Rajiv (who was formerlly called Rambo) was more tolerant of me and my equipment - Karen has no idea why he disliked Canon's so much but wonders if different camera's have different shutter sounds and the photographer that 'employed' him had a Canon. He was kept in a concrete floored enclosure which was cleaned out using a pressure washer under the bars - he still had the sores from laying on it.  RIP Rajiv.


I really enjoyed my photography day and have posted some of my best images on my Flickr page.




Life is short and MS unpredictable!

Well, so much has happened since I left my job - then again  maybe not. I have somehow found myself co-erced in to 'working' a shift at our local MS centre and charity shop as well as setting up a Facebook page for the Branch. The shop is extremely busy and I admit I am at times overwhelmed by people's generosity, but also by the amount of stock that I seem to be expected to price up and put out on the shelves during a voluntary shift. Some of the more experienced staff seem oblivious to the fact that my MS makes me emotionally instable and that if I feel I can't cope I involuntarily burst in to tears. This doesn't look good in the middle of a shop full of people but I am learning to try to do things at my own pace and leave what I can't cope with. I just think being unable to see the counter through piles of stock looks terrible to customers and would certainly put me off if I was to walk in somewhere like that - maybe it's just me!

Hubby does some 'work' there too in his capacity as a PAT tester - assessing electrical equipment as safe both for the shop and the goods to sell. He also now drives the minibus to take people with MS who wish to go to social events in their wheelchairs or who have no other means of transport once every two weeks. I sometimes go to the friday club which is held at the Ponda Rosa twice a month if he is driving. If you are reading this and live on the island with MS and want more details about this or the MS Society Branch let me know.

I am still unable to drive as my feet have unfortunately not regained normal sensation and I can't feel the pedals in my manual car. This is becoming increasingly irritating to hubby who needs to drive me anywhere I want to go, and me for having to ask him to do so. Fortunately, after spending 3 weeks completing the paperwork though I have now been awarded higher rate mobility component of disability living allowance - and because my walking is now so badly affected - a blue badge.

We also decided that as walking is such a problem I should get a mobility scooter. So seeing one on Gumtree for £600 (normal new price nearer £1000), we arranged a ferry and took a trip to the North island to have a look. It was perfect; strong enough to take my amazonian frame and being capable of up to 8mph, legal on the road (taxed and insured) would be fully capable of getting me out to the local shops and to the MS centre for my shift once a week when hubby isn't there. Obviously in bad weather we would still take the car if my poncho isn't up to the job. I do get some odd looks sometimes but if I need it, I need it and most people are very understanding but if you are one of those who don't like it TOUGH! Actually though I do still try to walk around the supermarket using a trolley to hold on to - I have been on the receiving end of some very poor manoevreing by people using those machines in shops myself and don't want to be responsible for knocking displays or other people over! But as I say - Life is too short and MS unpredictable. One day I might not be able to get out on a mobility scooter so while I can I will!

Tomorrow is likely to be a very important day for me - it is the day I attend the mobility centre in Southampton for my driving assessment. No, I didn't get that wrong, it is not a driving test but rather an assessment to establish if, given a suitable vehicle with adaptations such as hand controls, I could once again get safely behind the wheel and through the motability scheme then 'lease' a car that I can get my scooter (or buggy as I prefer to call it) in the back of, ideally by myself. This will mean I can take myself out on photographic jaunts to the zoo or other places without an often disgruntled hubby tagging along.

Talking of photography I had my first attempt at night photography last night - we went to Robin Hill to see the illuminations at their 'Electric Woods'. I had to read up on long exposures and take my tripod with me and it took a bit of trial and error (plus it was flippin' freezing so  my fingers were number than normal trying to operate the buttons) but see what you think. I have put a couple below.





Thanks for reading as ever, hopefully I will have some positive news after tomorrow - and Pootle and I can venture further fairly soon.  








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 Hello and welcome to my blog. I will update it as often as I can, according to life events and my MS permitting. Please feel free to leave comments but remember I'm new to this so be gentle with me!

©Jenny Harrod 2009