Showing posts with label Jemima. Show all posts
Showing posts with label Jemima. Show all posts

Wednesday, 26 September 2012

OUCH!

There seem to be too many ouch points in my life with MS. Many of them are not physical pain. Recently there’s been

  • the fish food fail - my flatmate was away and, in typical MS fashion, I put a tiny bit of feed in the lid of the fish food container and then, instead of tipping that little portion of granules in the lid held in my left hand into the tank, I tipped the whole container held in my right hand. It was horrible. There were fatalities. My flatmate was ostensibly forgiving;
  • the falling fails – the most dramatic was one I tweeted about. Jemima and I fell in a tangle in the new venue for the show we were in. That was an ouch of physical pain. My bruises were spectacular like this on my thigh
  • the oil cap drop – I was topping up the oil in my car and dropped the cap. It got caught somewhere in the engine and I couldn’t retrieve it. I was in danger of being late for a roleplay job so I drove the short distance to the venue. After the job which finished mid afternoon, I phoned the AA because I couldn’t risk driving further without an oil cap. The very nice man came, reassured me it was not the most stupid thing to have done, shone a torch, saw the oil cap and managed to reach the ledge it was balanced on and replaced it;
  • the scripts that make no sense leading me to query is it my mind or is it poor writing?
I’m tired. I’m very tired. I look at my diary and it’s full. But only for a couple of weeks or is that three… I don’t know any more. I don’t quite know where I am or what I’m doing. I’m suffering.

And I miss MyMan. I miss that person to share my life with. He said on the phone recently, because we still talk (occasionally, not like the phone calls every evening after 8pm meds unless we were together)… Anyway he said: “that’s who I am”. He was talking about going to the gym and cycling and I’m not sure I gave that enough weight.

If that’s who he is, does that mean he’s found himself? And have I lost myself along the way. Maybe I have.

Today of all days is not a day to be lost. Today has been Yom Kippur, the Jewish Day of Atonement. In years gone past, I would have gone to the synagogue. We would all have gone. The whole family. We would all have fasted. The full 26 hours (yes, 26 not 24). Now there’s just me. My brother and sister both have families of their own. I’ve not eaten a meal today, just had fluids to take my meds with and stop MS collapse and I have done some contemplation.

But I do not class myself as a practising Jew nowadays. I probably haven’t done so for years. I am Jewish. I always will be. As a vegetarian I don’t have to consider whether or not I would stick to kashrut (best known as the Jewish dietary laws that include not eating pig, shellfish, any animal that doesn’t have cloven hooves, rodents, reptiles, amphibians, not mixing meat and fish nor meat and dairy at the same sitting – that is not kosher). I have never eaten bacon, pork, shrimp, prawns etc and, if I wasn’t vegetarian, I would be unlikely to start now.

I grew up in a kosher household – for the most part that is, from a food perspective, including having separate crockery, cutlery, saucepans, washing up bowls and tea towels for ‘meat’ and ‘milk/dairy’ or ‘parve’ (neutral) dishes. Meat was bought from a kosher butcher. Friday night was special every week with lighting of the candles, blessings and a meal. Similarly, most festivals were observed. You might say religiously.

However, my mother used to say you can fast anywhere and on this, the holiest of days in the Jewish calendar – the Sabbath of Sabbaths – she professed not to mind if we couldn’t be with her and my dad. I think she would have minded if I hadn’t observed Yom Kippur at all. Hadn’t gone to synagogue. Hadn’t said the Al Chet (confession of sins repeated several times throughout the Yom Kippur services). Hadn’t recited yizkor (a service of remembrance particularly for those for whom one or both parents have died). Today I didn’t. Ouch! That’s my conscience pricking me.

Tuesday, 24 April 2012

I didn't run the London Marathon

Sunday 22 April was a big day. I had been building up to it for months. I didn’t know what it was going to be like but expected something special. I didn’t run the marathon but it was a mega marathon-like achievement for me. @Dr_Neil_ (my flatmate) had asked me ages ago to keep the date free but steadfastly refused to tell me what we were going to be doing beyond it would be partially outdoors and I should take Jemima.

On the day itself he still wouldn’t tell me where we were going until I was in the car. I hadn’t guessed we would be doing this: PenguinEncounter at Seaview Wildlife

Not only had @Dr_Neil_ booked our ferry across to the Isle of Wight and the experience at the wildlife centre, he had also booked a table for us to have lunch at a lovely pub: The Boat House. And then we had time to kill before our ferry back to the mainland so we had a wander round various attractive locations and even had time to play some games in one of the amusement arcades. I’m not sure how I feel about our newly acquired additional flatmate even though I had to admire @Dr_Neil_’s skill with the claw crane to get him -  

The picture next to the smurf is one I took using @Dr_Neil_’s fancy camera. It was actually a double rainbow starting and ending in the sea.

The rainbow was just part of a wonderful day. The sun shone for most of it. We had an easy ferry ride across to the Isle of Wight and when we got to Seaview Wildlife it was fabulous to see so many different birds, otters, meerkats, wallabies and other creatures including fish. As well as beautiful live fish in tanks there were dead ones for us to feed to the penguins. It was an amazing experience. After joining other visitors in giving individual fish to a few penguins whilst they were swimming around,  
we were taken into the enclosure and given a bucket of fish each. Despite the warnings on most visitor information that penguins were not to be touched, we were encouraged to stroke and even tickle the tummies of a few individuals including the oldest resident.  
I had originally said I had no intention of ‘following’ a penguin on Facebook. Needless to say, having met Dippy it would be rude not to ‘like’ his Facebook page.

It has taken me a couple of days to recover from the marathon day but every second of the exertion was worth it. I must have walked a mile or more using Jemima over the course of the day and I have some wonderful memories if only my scrambled eggs will let me remember them. Thank goodness I also have the photographs http://www.flickr.com/photos/69825128@N00/sets/72157629513458338/


I expect my experience matches that for excellence of most London Marathon runners. They may have had to go the 26.3 miles or so distance but I went as far in my own way. Next year I may even join my MSer friend who recently walked a mile for Sport Relief - http://my.sportrelief.com/sponsor/sarahssportreliefmilewalk I expect you can still sponsor her or you could save your pennies for me - big stuff is happening and I would like as much support as possible. It starts with Cake! Cake Break

Friday, 23 March 2012

Busy busy busy

I've not been a good blogger recently. In fact, I've been very bad.
I have often thought of things to say then forgotten to write them down.
Ideas come and go in the blink of an eyelid or snag of Jemima on a pesky kerb.
I have been very busy - this is not an excuse, a boast or a plea for help. Or perhaps it is all three. I have lost count of how many miles I have driven since my last blog post but I've been to London, Leeds, Oxford, London, Oxford, Nottingham, Oxford, London, Oxford.... yes, I live in Oxford!

Somewhere along the way I have been involved in radio interviews on behalf of the MS Society UK about the not 100% nice NICE decision on Gilenya. It's nice for me that they have agreed to prescribe the Wonder Drug but there are criteria to be met and I don't know if I will fall through a loophole. I am hoping not as I have been taking it for a year and have no intention of ever self-injecting again. That would not be nice.
I would rather not be on any DMD than go through the half hour hell of injecting three times a week. Apologies if Copaxone, Rebif etc etc work for you. I think my tummy has only recently recovered from the Rebif injection site side effects and I stopped using it a year ago!

So NICE have made their decision. As arranged by the press office of the MS Society, I recorded an interview for local radio (from my mobile phone outside a jolly* London pub**) saying what it means to me and how the Wonder Drug has changed my life, which it has. I can come and go without thinking about autoinjector, needles, freezer for cool bag, let alone the time it took to actually do the injection.

Some MSers may not take any meds but I do and my morning cocktail is easily supplemented by an additional capsule of Gilenya.

My second interview was for BBCRadio5 Live. That one I did live from a local radio station. Bizarrely, a friend heard it and emailed me: 

"Put my car radio on as I set off about mind ago (sic) .Heard a distinctive voice and thought that's our [Toots]. Missed the beginning of your interview, but caught most of it. You argued your case coherently and eloquently. Thought you would like to know"

Another friend has donated to (one of) my fundraising ventures. His comment is: "You are SO the female John Noakes. All power to you." - how lovely of therm both. (If you don't know who John Noakes is you probably didn't watch Blue Peter on BBC1 in the same era as me)
All the comments and affirmations are truly heart warming and as I carry my mantle of campaigner, fundraiser and idiot - whoops, daredevil - I am glad to be appreciated.

It is spring.  Time for things to blossom.

I have posted pictures to the MS Trust I also have MS project

I am forging ahead and if you want to sit in despair then please don't bother me - I'm too busy!

*busy
** Urban Bar in Tower Hamlets