Sunday, 25 January 2015

Charity Support and Winter Running

13 Weeks to go.......its creeping up is the London Marathon, to sponsor me to raise money for the Encephalitis Society click here!

Charity Support

We all know the big charities and a very good idea of the work they do. But what about the smaller charities, what do they do?  How can they help people?  I hope here to offer once insight into the support they do and it is something I very much appreciated at the time.  My wife suffered some 3yrs post illness a downward decline in her mental abilities putting more stress on myself.  This period was really bad for all of us, as none of knew what was happening or why.  My wife's capabilities finally required her to be reassessed in both her neurological and psychological areas and was eventually re-admitted into hospital as a result on these on going assessments.What I found then was the lack of information that was forthcoming from the various medical staff.  Very little was passed onto myself and I only gathered up mutterings from the nursing staff.  I felt I was left out of the loop regarding my wife's assessment and everyone we knew was asking me what was going on, and of course I had no answers. 
I think it was a combination of frustration, desperation and anger that I contacted the CEO of the Trust to complain about the lack of information that I was getting (or not getting).  A meeting was arranged with a member of the CEOs staff and one of the Consultants.  I was also in contact with the society as well to try and get more info about what else I can do and I mentioned about this meeting that I had arranged.  Ava kindly volunteered to attend the meeting with me.  She arranged to come to Derby and I met her the night before and we discussed at some length my wife's full case.  The next day we went to the meeting were I aired my views and the Consultant replied.  At various points and at the end, Ava added with her thoughts.  This was great to hear.  Someone who has a good understanding of this condition and the possible/various options in terms of diagnosis replying to a Consultant.  It seemed to be 'fighting fire with fire'.  From this meeting, Celia was referred to the National Neurological for further assessment, a re-assessment with the neuro-psychologist who first assessed her 2yrs precious and a commitment to keep myself better informed.  For me, to have Ava give up hr time in meeting with myself as well as attending the main meeting was something I can only say a very big thank you to her for.  It felt for myself, here is someone who is on my side and will fight for a better understanding of what Celia is going through, and thus hopefully for myself to help plan what to do.

All in memory of Celia.....(and a wee baby Zoe)

Winter Running

Marathon training is not easy.  For myself it is a 17 week programme - that's about 1/5th of the year dedicated to 1 run.  At this time of year to go out in the evenings (or mornings) when its is dark and very cold is not nice.  At times, seems a better idea to stay in with a cup of coffee, but no - training must go on.  However, there are road races that do occur and last weekend (19th Jan) I had hoped to run a 1/2 marathon in Cheshire.  Several reasons, based in a village where I went to school, a good race organised by a small club.  on the morning it was a lovely cold, crisp misty morning and off I went to the race HQ.  Meet some old friends, said hello and waited.  Got told that the start had been delayed to due a number of places the ice had not quite cleared.  So, a bit more waiting about.  Then we got the sad news that the race had to be cancelled on recommendations of the Police.  It was fine for us runners, but the concern was cars and how they would go on the ice, esp with abt 2000 runners on the road.  These things happen and safety does come first.  Head back to my sisters, where I promptly change and then go out for a run around hers - so all was not lost.

Cheshire on the weekend 18th Jan - lovely


So far, 4 weeks total of 93.6miles, ave of 23.6miles, kept up the 4 runs a week and only abt 4miles behind the target (due to race cancellation), Thats the base training done, keeping going through the dark & the cold.  The mileage will creep up from now on.

Sunday, 11 January 2015

15 weeks and counting......

It 15weeks to the Virgin London Marathon, one of the greatest sporting events in the World.  An event that seems to capture the hearts, minds and bodies of the UK.  While it may not be my first marathon (that's was Edinburgh 2008) it is my first London Marathon.  I said many years ago that I would not do any more charity runs except (I) A marathon in my 50th year and somewhere a bit different, or (II) London - well it is London, and this year, on my 49th birthday (so very close to the 50 lol).

Why run for the this charity?  This is a very personal thing for myself and my daughter.  My wife suffered from this illness some16yrs ago, yes at the time she was pregnant.  So a time that should have been great joy was a time of stress and worry for very different reasons.  Celia's mental behaviour at that time altered, became strange, reasoning and logic went out of the window.  A lot of this was put down to stress being 36weeks pregnant.  After some assessments, I was told it wasn't a mental issue and would be referred to a neurologist, but until the baby was born, they couldn't do a lot.  Anyway, Zoe appeared a few days later and after a period of rest under went test inc a MRI.  I was told that there was a shadow on her frontal lobe, but it didn't look like a tumour.  More rest, more test and then she was referred to the specialist neurological unit in the Queens Medical Centre in Nottingham who concluded the same, but they also did a biopsy and it was only at this point was I told that she was suffering from encephalitis and would be discharged in a few days!!

A couple of years later as I balanced various issues, I finally found a charity that offered some support.  I booked and attended a conference/meeting session in York (chance to get away as well to a beautiful city) and it while at this meeting that I met/saw the full scale of encephalitis and the aftermath it plays.  At this small meeting I saw that we weren't clearly not the only family who have suffered from this illness and luckily met one of the speakers who explained in 2mins, more about my wifes potential issues than any Doctor or psychologist had in the previous 2 years. In many ways presented a great relief to myself.

This is only a brief and small into why this charity has helped me, and why I wish to help them.  I will add more incoming weeks about our we suffered, how the charity helped (esp Ava) and what they do.

Please, if you can donate, do so here: Fundraising Page
Charity Page