©Jenny Harrod 2019

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!

 

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