In May 2003, everything changed.

Over the course of a few days I had continuous pins and needles in my hands and fingers which annoyed me, particularly when trying to do intricate dressings and suture removal. We had a few days away on our boat  and the day after we got back I developed a similar feeling in my toes and feet. It felt like there was wet sand between my toes. There was also a feeling like a tight band around my chest. It was a Saturday before a Bank Holiday weekend. I phoned the GP who said to come in on the Tuesday morning.

By the Tuesday morning things were very odd, it felt like I was sitting on airbags and the car seat behind my back felt as if it was padded, I was also losing feeling in my "nether regions" He did some checks and sent me straight into hospital - yes, that's the one, Bury St Edmunds. I phoned my manager from the ward and explained I couldn't come in for at least the next week but would keep in touch. She organised a collection and in a few days a card and some beautiful flowers arrived

Over the next few days and daily weights showing a loss of about 2lb a day and paralysis creeping up my legs a diagnosis of
Guillain-Barré syndrome was considered, but after I went through a myriad of tests,  Lumbar puncture, MRI scan, blood tests, scrutinised by medical students who had never seen anything like it before, a confirmed diagnosis of Multiple Sclerosis was made. I now realise I was lucky to have a diagnosis so quickly, many people are in "limboland" for months or even years.

I was in hospital for 3 weeks altogether, my wonderful husband visited everyday, juggling his night cleaning job, cleaning the house, doing the washing and trying to fit in some sleep. Family visited often and my friends from the Red Cross set up a visiting rota and provided a wheelchair from the medical loan department. All I wanted to do was sleep. After a course of intravenous steroids I got my legs back and learnt to walk again, with a Zimmer frame at first but then slowly back to normal.

I was discharged on our 10th wedding anniversary and went straight to bed at home and hubby and I both slept from about 5pm until the next morning. When I weighed myself the next day I had lost 2 stone in the 3 weeks I was in hospital!

Adjusting to life at home with MS was initially difficult, I couldn't cope with buttons and other fastenings and even pulling up clothing was at times impossible as I always thought I had a firmer grip than I did - public loos were terrible as I often accidentally "punched" the walls when I had let go of my jeans whilst trying to pull them up. I ordered a RADAR key to allow me access to disabled loos as they are bigger cubicles and allowed for the flailing arms I was consequently left with. Little things we all take for granted like hanging out the washing was impossible as I couldn't cope with holding items in place and manoeuvring pegs. I couldn't (and still can't) prepare and cook food as I lose my grip on knives and saucepans, fortunately hubby is an excellent cook and enjoys preparing meals - even if his portion size is much larger than I can comfortably manage. Throughout all this, my work colleagues kept me up to date with the progress of moving premises and one of the Nurses, Rachel, even took me in for a look round. I was supported by my "virtual" Nursing friends too, on the UK Nurses website                                                                         

I wasn't allowed to drive until I had an assessment arranged by the DVLA, to make sure I could manage the steering, gears etc. Fortunately I passed this without too many errors but can only have a 3 year licence due to the disability.

I sought information and support from the MS Society website, the other sufferers on there were a mine of useful information, and I soon found myself able to help other new sufferers too. Often there is a long period between developing symptoms and actual diagnosis. I called this period "limboland" which is a term the Society has now adopted on it's website - my claim to fame!

I was away from work for four months adjusting to my new disabled status. My employers were so understanding - only to be expected from a GP Practice. They understood the problems I would have due to reduced dexterity and came up with an amazing solution.

At about the same time the Government had introduced new targets for GP's to reach in clinical, and organisational areas. They gave me a new title "Clinical Quality Manager" and gave me responsibility for chasing up the clinical points whilst also maintaining the CHD register and seeing the heart patients. I relished the new responsibility and as the Practice had moved to new premises during my sick leave found myself in a new consulting room with a new title. Perhaps I wasn't on the scrap heap after all.

I threw myself into my new role and even felt well enough to increase my hours to 24 per week and this was fine until in December 2004 I went to a two day course on Stress Management. It was here that everything must have come to a head and I just burst into uncontrollable tears. I have no idea why but I coudn't stop the tears for pretty much the whole two days. I was having a nervous breakdown.

After the study days I went to see my (wonderful) Manager, Hazel, and I was in floods again. My GP wrote me "off sick" and prescribed anti depressants which, although I had them at the time I was diagnosed with MS when they worked well, didn't touch it this time. He changed them to dosolupin, which I am still taking and although I do have some tearful episodes they do seem to keep it reasonably well controlled. When I went back to work I decreased my hours to 10 a week but oddly seemed to be doing more work.

When I left the Practice in April 2008 I was responsible for                                                                                              

  • Chasing QOF points in all clinical areas including CHD, Heart Failure, Stroke, Kidney Disease, Mental Health and Diabetes.
  • Practice Booklet design
  • Website design and updates
  • Life support training for non clinical and junior nursing staff
  • Developing guidelines, protocols and procedures
  • Developing Smoking cessation stategy (we were awarded Best Practice status for that)
  • Sourcing and displaying posters and patient literature
  • Health and Safety representative
  • Sending questionairres and reviewing patients with heart disease and strokes

and all in just 10 hours a week!

I stayed until April to help the Practice meet their targets which we did!! but we planned to retire to the Isle of Wight whilst my health and our finances permitted. It is by no means certain thet the MS will get worse but due to its unpredictability I wanted to enjoy the Island for as long as possible, hopefully until the natural end of my life.

In 2005 I had suffered 2 minor relapses of visual disturbances and the "MS Hug" This is an odd feeling when you feel as if you have a tight girdle around your middle, It can and did make me feel quite short of breath as it's like your lungs are being compressed inside your chest. This meant I was given the chance to go on DMD's (Disease modifying drugs) The one I chose was Rebif, this is an injection I have to give myself 3 times a week. I use an auto injector called a rebiject which I find easier than actually sticking the needles in myself. Yes it does hurt and sometimes stings after it's been given but with the auto injector it is at least quick. The research shows that these interferon drugs can reduce the number of relapses by about 30% and the severity of relapses by a similar amount. Since I started it in August 2005, I have had no real relapses (touch wood!) but if I get over tired then my residual symptoms do get worse - blurry left eye and painful hands/fingers and toes. I also still have backache almost all the time for which I take CoCodamol and use a TENS machine. After using the gym I do tend to feel I am trying to walk on someone elses legs but I suspect that is much the same for everyone.

 In 2008 hubby and I moved to the Isle of Wight - thanks to some backdated underpaid benefit and a legacy from a much loved Auntie (God Bless you Peggy), we were able to pay off our mortgage on the mainland and buy a bungalow near Sandown. We spent 18 months settling in, decorating and getting the garden to resemble something more than a jungle as you can see from the IOW page. We also brought a chalet with the intention of having somewhere for family and friends to stay when they came to visit. However they didn't seem too bothered about it so we now advertise it for holidaymakers (a couple or family only) on our other website www.harrods.me.uk.

In 2010 I decided that the time was tight to try and find a job on the Island and after a couple of failed applications  I was lucky enough to apply for and be offered the job of Clinical Governance Administrator at a small GP surgery on the Island. Here I taught myself the basics of another medical software programme, Vision, which was totally different to the Emis that I had got used to on the mainland. I was also responsible for many  tasks including clinical audits, summarising the notes of new patients, inputting data from hospital letters, doing the recall letters for diabetic appointments and maintaining the diabetes and cancer registers as well as anything no-one else wanted or didn't know how to do. I loved the job initially as it gave me a purpose in life but after six months I started to suffer relapses and I was becoming increasingly unhappy that I had no patient contact and even worse felt undervalued being unable to even offer advice if a patient phoned up in distress - being employed as 'admin' and not 'nursing' meant this was inappropriate and could open the practice up to litigation. I bet they could if it came to light that a tragedy happened through the omission of timely advice from someone who could have helped. The first relapse, in November 2010, came just three weeks before we were booked to go on a cruise - it affected my feet and legs and I couldn't drive. I hated being reliant on others to act as chauffers but did manage to go on the cruise although on shore excursions I did slow up other holidaymakers as my walking was also affected and I felt very unsteady - thank goodness for hubby and my stick.

On a more positive note, in 2010 I also managed to complete the flat Walk the Wight in May, and start an Open University course with the ultimate aim of doing a degree.

I struggled on with the job, with no real training but muddling through as best as I could until  following the death of my father in March 2012 (oddly just the day after I had been in the job for 2 years!), I knew that another relapse was iminent. It was, and struck just a week after my birthday in June while we were visiting our families on the mainland (I missed dad's funeral as I knew I would find it too difficult to cope with emotionally). Again I was unable to drive and instead of sharing it, poor hubby had to drive all the way back to the island himself - I felt so guilty but as I couldn't feel my feet it was unavoidable for the safety of other road users and ourselves. When we got home I made the decision to leave the job - I handed in my notice and officially left on 7th July 2012 without being able to go back since returning from holiday. My feet are still numb and I am still not driving. My job was actually advertised in the Islands newspaper the day I left - insensitive or what. I have not had a leaving present or even a card just a brief email wishing me well in my plans to get back into nursing again. I didn't want a leaving do - they know I don't do socialising as I am in bed at 8pm every night, but a little bit of appreciation wouldn't go amiss, especially as it is the job that has made me ill and since a couple of practice nurses left after just a few months and were shown more respect. How different to when I left my job on the mainland.  They are advertising it as a "key position within the practice" - ha! I wasn't even mentioned on the website as a member of the team, although everyone else was. Bitter, moi? yes, but maybe I was just too good for them, still I will need a reference God willing so best not make waves.........




 

©Jenny Harrod 2009