Never Walk, Run or Drive Faster than you Guardian Angel can Fly

Hi, My name is Jenny and this is my "Auto-Blography"

No, I'm no-one special and my story is by no means unique. I'm not ever going to be famous or rich, nor a great explorer or inventor. I'm just another face in the crowd - my only outstanding features being my height at six foot one and a half (or five foot thirteen and a half as I used to say with a smile to elderly patients), the fact I have Multiple Sclerosis, I was unable to have children (life sucks!) and I had to take ill health retirement following a back injury just as I'd qualified as a District Nursing Sister - Family or career? someone somewhere didn't want me to have either!

I have not lived a particularly exciting life (yet!!) but if one person finds a little comfort or inspiration here then it has been worth it.

Enjoy your visit

Jenny's Blog

Trips, Falls and Liver Scans

Well, it has been an eventful few weeks, including a couple of falls and an abnormal blood test that has concerned my Neurologist enough to request a Liver Ultrasound Scan - one of my MS Nurses called to let me know earlier today. Of course it might be said that anything Him-in-the-shed can do I can do better. He has also got to have a scan on his liver due to some abnormal results picked up at his Lipid Clinic appointment.The usual reason for a 'fatty liver' which he has, is alcohol, but I know for certain that that is not the cause as I don't think we have had more than one bottle of red wine at Christmas time. Reassuringly, his cholesterol is the best it has ever been but his liver enzymes are concerning his Consultant.

My abnormal results are hopefully just due to my Rebif injections as they have been gradually increasing over the past few years. If I can change to an oral medication I will be thrilled - I am fed up with doing an impression of a pin cushion three times a week. Fingers crossed it is not something serious in either of us. I have noticed an abnormal permanent salty taste in my mouth so whether that is relevant I don't know.

On a positive note my weight loss is continuing slowly and I have lost around 3 stone in the past year with Him-in-the-shed managing to lose the stone that his consultant ordered him to, since October.

Thanks to my MS I have had a couple of falls over the past month or so - the first at the swimming pool when I was hauling my bag out of the locker and toppled backwards with the effort. Then on Saturday, I had just come out of Shanklin Theatre following a breathtaking performance by Lionel Richie tribute act Malcolm Pitt and the Jonny Miller Band (Oh,What a Feeling!), when I was leaning against a rocky wall attempting to ring hubby to come and collect me, when my feet slid from under me and down I went on to my right hip. No-one saw me, (or if they did they ignored me) and I felt helpless as I wasn't sure how I could get up from that position. I had to turn over and get on my knees and haul myself up on the wall - grazing my hand in the process, I then realised I had my foot on my mobile! Fortunately it wasn't broken and my Knight in Shining Armour arrived to take me, and my bruises home. I have quite a bruise on my hip and my arms ached terribly yesterday, but I forced myself to go for a swim today (1 km 40 lengths).

Getting to grips with Caz the Kuga - it is VERY thirsty and seems to be very poor MPG, perhaps its my driving (or the air con!). One issue I have is that my proprioception isn't very good and I think it is much wider than Hettie the Yeti was so I am tending to drive very wide of parked cars which annoys oncoming traffic (I did fail my 1st driving test due to driving too close to parked cars!)

In the process of selling the holiday chalet now - trying to find a solicitor to do an ID verification is proving annoying to say the least. Then our next excitement is a cruise to Norway next month.

New set of wheels!

Well, I can't believe it but I have now had Hettie the Skoda Yeti for 3 years.  I get to choose a new car from Motability every 3 years as I receive the Higher Rate Mobility component of Personal Independence Payment (PIP). I am eligible for it because my mobility is often limited due to my MS.

"But you look OK!" I hear you cry!

Maybe, but I am unable to feel the pedals in the car because it feels like my feet are permanently either wrapped in wet bandages, or my shoes are full of gravel. I defy you to walk more than 20 metres if you have a single stone in your shoe!

As before I have had the car fitted with hand controls which can only be done to an automatic and am having to get used to this new cars steering which seems to be quite a bit heaver and causes some pain in my left elbow and shoulder. Hopefully this will get easier if I do a few short journeys every few days. We have no longer trips due until May so with a bit of luck,some practice and some swimming to build up the deltoid muscles I should be OK for the M3 and the M11!

What is it? Didn't I say? This time I have gone for a classy Ford Kuga ST Line in Diffused Silver (OK it looks brown like Hettie, but if the light catches it there is a definite silver tinge to it.

Now what should I call it. I did think of 'Caz' as I chose it the same day that I found out my best Nursing Buddy Carole had passed away from breast cancer. Hopefully if her sister Sue reads this she will approve! What do you think - Caz the Kuga?

                           

 

So here we are in 2019

Wow, how did that happen? Three years have flown past and this Autoblography website (that I had forgotten about) came back to, well, haunt me isn't really the term I need.

I received an email out of the blue from a lady called Selina from the British Science Museum regarding some Iron Lung Ventilators, that they might be being gifted from Newmarket General Hospital , and could I provide any background information on their history and use. She had obviously Googled 'Iron Lung' and my little website and photo popped up.

I have given her my memories from the 1980's and have even found our (dare I call her old?) Ward Sister Jean Berrigan. She has given me some more information which I have passed on to Selina, and Jean is still in touch with a number of the Nurses from the 'Renovation Game!' Selina is also in communication with Dr Shneerson himself who will remember where they all came from - he apparently put out a Nationwide Appeal for any Iron Lung Ventilators and Pumps for us to renovate and get back into working order and amazingly a number arrived at Newmarket in various states of disrepair - one even had a skeleton of a bird in it, and another was the size of an incubator so obviously meant for a small child. Jean Berrigan at one point had a number of the metal ones in her garage that she was sanding down before they were resprayed for us at a local garage. 

Right, so how did I get on with my 2010 resolutions?

Open University

Well, amazingly in June 2017 I graduated at Ely Cathedral (just across the road from the Sue Ryder Home where I worked as an Agency Nurse in the early 2000's). I know, it is a long way from the Isle of Wight but I really wanted my Mum and Mother in Law (who had her 89th birthday the same day) could come along. I am now a BSc Open and very proud of it. I actually managed to achieve it without taking a single exam as the modules I chose - Psychology, Science of the Mind, Counselling, Exploring Aging, Death and Dying and Sociology were all assessed on Computer based Assignments. Living on the island meant I was also unable to attend any tutorials as they were all on the mainland. My first marks were not brilliant and I got Grade 4 passes for my first 3 modules and then I seemed to grasp what they wanted and was getting grade 2's. Amazingly, my last one which my graduation depended on (Making Social Worlds) had me worried as while everyone else had their results mine was held back. I was anxious for almost a fortnight believing I was a borderline pass/fail. But then.... It came through at 85% which was on the cusp of a grade 1 and 2!  I was given a Grade 2, a 1 would have been incredible but I was happy with that. I didn't get Hons but there were no other level 3 modules I could do without an exam. After my Graduation there was I would have loved to do but my transitional arrangements meant I couldn't have any more funding.

Volunteering

Well, I  achieved that too, I was a shop volunteer at the MS Society shop in Shanklin since 2012, when our wonderful Shop Manager and Welfare Officer Jane Dollery, left the position in 2015 due to poor health, and wanting to move to the mainland to be closer to her family. This meant they needed a replacement to take over offering support to newly diagnosed, and others with MS related concerns. I therefore became the official Lead Support Volunteer for the island Branch of the MS Society, and was given the support phone and an official email address. I did explain that I had social anxiety issues using mobile phones, but the rest of the Committee were happy that I used it for text and voicemails only (no-one else wanted to take it). As it happens I get no mobile phone signal at home, so they would be the only way people could contact me anyway.

I always prefer email anyway and this now seems the most popular form of communication except for a few die-hard technophobes. I also set up a new Facebook page with over 200 'Likes', and a Twitter Account, and I now send out a monthly e-newsletter to over 150 people with little snippets of information and a list of upcoming events and activities on the island. 

I promoted a joint venture with the island Branch of the Oddfellows to enable anyone with MS to go Ten-pin bowling once a month for free (funded by our MS Group), with their Carer or Friend paying just £6.95. I really did this to try to encourage younger people to come along but it worked out that our star player is actually 78 and plays from a wheelchair!

Another thing I introduced was Free Swimming for people with MS at the Saturday Swimming Club for people with Disabilities that I attend. This has attracted a few more younger people, and last year our two teams of disabled swimmers (Tortoise and Hare Teams), along with many other groups through the day took part in a Swimarathon event which raised nearly £1000 for MSS IoW Group! We were one of 4 charities selected for donations which were gratefully received. 

MS Update

I fear it is now getting worse and moving into a Progressive phase -  my cognitive function is in decline, (not helped by my 1pm and 4pm Fatigue attacks). I feel very unsteady on my feet at times, especially after swimming, which I still love, in fact last week I had a fall in the changing rooms which knocked my confidence and bruised my pride (and bum). I am fine in the pool and could probably still swim a mile (64 lengths) but I have to remember I need to walk to the changing rooms and get showered and dressed which totally saps any energy I have left. Yesterday I had to literally think of every task involved in getting dressed and was quite dizzy in the shower. Fortunately I managed to get into one of the disabled changing rooms so could sit down and shower and take my time. I really struggle to get dried though and putting clothes on straight is becoming a real problem. I am even beginning to think that I might need to get Him-in-the-shed (HITS) to come and help me get dry and dressed, this is not what I want from my MS thank you very much. I cannot walk very far so swimming is my only exercise. I am also noticing when I am lying in bed I am getting  hypnogogic type spasms in the morning where as I used to get one very occasionally at night before falling asleep. You know the feeling - a jolt like you step off a high kerb!

Diet and Weight Loss

I am doing quite well on the weight loss front, not doing anything too drastic just stopping eating when I am full, and not having much meat or alcohol. I am at my lowest weight since before we got married, but I still have a little way to go to meet my target. HITS isn't doing so well though and I weigh less than him now, yet he is supposed to lose a stone by the end of February and started in November. So far he's lost about 9lb and I've lost nearly 2 stone. He is on a strict low cholesterol diet under the care of the very scary Dr Al Bharani at the hospital - only fish and chicken with red meat and an egg once a week (I am having to keep up with the girls all on my own at the moment!). But then, I don't think you even know about the girls - that's a story for another day!

 

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

 

 

 

View older posts »

Jennys Blog Page

 

 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 2019