Mum With MS

Post Christmas Bruise

So.....I swore that this year I would NOT get swept up with the Christmas frenzy and would use the season of goodwill to reflect on what has been quite a frantic year. It started well. But then I made the mistake of confusing being reflective with being ineffective which resulted in being swept up with the frenzy on Christmas Eve. Well, actually that might be a slight exaggeration since I only needed an alarm clock for my 96 year old grandmother and a roll of wrapping paper suitable for wrapping all the presents for the kids that I swore I wouldn't buy. ( I do a lot of swearing.)

It took exactly 3 hours to buy 2 items. And one of them wasn't wrapping paper.

I had to have my first sit down after about half an hour as I was not only dealing with the MS tiredness but also with a back injury I'd picked up whilst trying to persuade Ben to put down the toy hoover he was using on the stage at church during the nativity whilst dressed as a donkey. (He was dressed as a donkey not me.) He stole the show. I was torn between being mortified and bursting with pride. Anyway, we (Ben and I) had a half hour sit on The Rows in Chester listening to the Sally Army Band play festive tunes for the shoppers. I kept welling up and Ben was rooted to the spot in absolute wonderment. It was beautiful to watch his little face.

I found an alarm clock in a jewellers but made that time old fatal error of thinking I might see something better in another shop. I didn't. We went back there 2 hours later with a stupid grin, a limp excuse and a limp.

Between the first and last visit to the jeweller I bought a plum pudding in Lakeland (not on the list but it had a Gold taste award and I thought it would be perfect for one of my neighbours) and had another rest on The Rows, this time at a little cafe and ended up being joined by a lovely lady called Ann who, it turned out, was spending Christmas at a hotel in Chester and was being collected by a neice on Boxing Day. We got chatting, as you do, and I discovered she was a widow of 2 years and hailed originally from Wigan. Being a St.Helens girl we had a good laugh about the local rivalry (our 2 rugby teams were always battling for various league and cup glories) and used the phrase "Isn't it a small world" on more than one occasion. (My mum is also called Ann and a widow of 4 years. I miss my dad so much it hurts.)

We bid our farewells and as I paid my bill I decided to pay for Ann's aswell. It was only a latte but I think it was this little gift that gave me the greatest pleasure of the whole of Christmas.

Christmas day was lovely. Ben has still not quite grasped the whole present concept and was more interested in watching the telly than opening the mountain of gifts that had mysteriously appeared under the tree. (Not all from me and The Husband I hasten to add.) We spent the day at mum's and since I was still suffering with the back I was driving so not having a drink made a huge difference I have to admit. Begrudgingly.

Then Boxing Day.

To cut a very long story short and avoid lawyers getting involved I saw my own backside Big Time. Let's just say we had to be out by half ten and we left at 11.10 and that in the time it took The Husband to get ready I'd got the boys up, dressed, breakfasted, done some ironing, made a sugar syrup stock and got myself ready. I was ready to hurt someone very badly by the time we left in the car. It still has the ESP warning light on by the way. I think I spoke 2 words to him all day. (We were at mum's again)

Anyway, the energy it took being annoyed all day wore me out and resulted in some spectacular acrobatics when my legs gave way coming down the stairs after putting the boys to bed. So now I have some quite decorative bruising on my left arm and down my left side.

We've made up since then. And he's done loads of housework. Note to self. Must see my own backside more often.

Mummy's car is not a toy

So.  Yesterday I got youngest male child out of the car and eldest boy child refused to leave the vehicle.  "I'm going to be my driver" he said enthusiastically.  Youngest male child is now such a porker I find him difficult to hold for more than 10 seconds so I scooted him into the house before I dropped him on the driveway. 

I went back for Son No 1 who had now managed to lock himself in the car, eject 2 CD's and put muddy shoe prints on the dashboard.  Thankfully I had the keys so it was easy to free him from the Passat playground.  I ruffled his hair and said something like "Oooh you're a cheeky little imp wrecking mummy's car!" as it's Christmas and I didn't want the neighbours to hear me screaming like a banshee. 

Never gave it a second thought until 7am this morning, with the 2 boys strapped in the back ready to be transported to Grandma's while mummy went to work to get some pennies, and discover that I have a pretty new warning light that I've never seen before on my display.  I reach for the manual and grope at fresh air.  I always keep the manual in the car but The Husband has been using my car while his was off the road and he's taken the liberty of rearranging things.  I take a deep breath, let myself back into the house and ask my husband through gritted teeth where exactly the manual is.  I know where I'd like to put it. 

Anyway, he sheepishly retrieves it from a drawer and we find the relevant page and I discover it's my ESP (I'm still none the wiser) and that if the light stays on permanently (it does) then there is a fault with the system.  Now, I read this in about 0.4 seconds but The Husband is not as quick a reader as me so I stomp off whittering as loudly as you can at 7 in the morning without disturbing next door "Why do they call it 'The Joy of Motoring'  should be 'The Bottomless Pit Of Endless Things That Snap/Break/Fall Off And Cost An Arm And A Leg'."  I get in the car and hit the ESP button several times like you do when you repeatedly press the button at a pedestrian crossing even though the 'Wait' light is already lit. The warning light stays on.  So there's a fault in the system. He then appears at the door in his dressing gown, manual in hand. Bear in mind I'm now 20 minutes late.

"The ESP button is on the left near the radio." 

"Yes.  I know where the ESP button is."

"Just swich it off."

"Yes I've tried that already."

"Ah well there's a fault with the system then." 

AAAAAAAAAAAAAAAAAAaaaaaaaaaaaaaaaarrrrrrrrrrgggggggggggghhhhhhhhhhhhhhhhhhhhhhhhhhhhh!!!!

If you read of a man admitted to hospital after being impaled on a VW Passat Manual, I never did nothing officer.......

Pre Christmas Treat

I received yet another parcel through the post today. God bless Amazon. I think I've bought every Christmas present from them this year. In today's package was a treat for me though. It's a book called Pushing The Limits by Mark Eccleston. Mark dived out of a tree into a haystack in a game of high jinx when he'd just left school. Sadly he missed the haystack, broke his neck and ended up in a wheelchair.

But this is no tale of woe. Mark went on to captain the British wheelchair rugby team, switched sports to tennis, became the first English player to be ranked World No 1 and won silver at the Athens Olympics. Talk about triumph! Can't wait to read it.

Since being diagnosed I have given in to moments - ok days, maybe even weeks - where I've used MS as an excuse for not getting up and getting on with my life because 'I'm too tired and my leg hurts and I can't see properly sometimes' (imagine high pitched whine for previous). Then I read about people who have had it proper hard, and I feel slightly ashamed. Then I go the other extreme, feel a complete fake because I haven't got Primary or secondary MS (the more aggressive types) so I plough myself into a very deep trough and end up laid flat for a few days, no use to man nor beast. Happily I'm starting to find some middle ground and have decided not to be so hard on myself.

So I shall enjoy getting stuck into Mark's book and be inspired by someone who has dusted himself off and taken on the world. I have a little confession..... I went to school with Mark, we grew up quite near to each other and he's a day older than me. We still keep in touch and his mum and my mum often natter at the bus stop in the village. When I think back to when the accident happened and remember what he was like in those early days and see how much he's overcome and how much he's achieved, I feel full of admiration and respect. And I also feel immensely proud that a lad I know has written a book that I bought on Amazon. How cool is that? Maybe one day he'll be buying mine.

Keep the eyes right!

It's days like today when I really know I've got MS. I've been in denial for the last few years and then I have a day flung at me like today and I'm left a gibbering wreck on the sofa.

So. Yesterday limped hubby's car to the garage. Took the kids over to mums in a friend's car (I have very trusting friends) and had a rare night out at a Christmas do with my hubby. Was V weakwilled and ended up having chocolate and coffee and several glugs of vino de callapso. I paid in full this morning and for anyone wondering if giving up caffeine and dairy might be a good idea to help their MS, I can assure you it is. I felt, to paraphrase Withnail, like there was git behind my eyes. This can't be down to just the vino as I only had a glass, well ok, two, but it was more like my whole body had been hit by a bus.

And so much for a lie-in this morning. Old habits die hard so I was wide awake at 6.30, Dan's normal rise and shine time. I popped to Tesco in my friends car - it so lovely shopping at 8am, no queues - then went to collect Audrey (it's her car I'm gadding about in) and she took me up to the garage to collect hubby's car. Head gasket, £550, thank you very much. What does a head gasket do???? I drove down the hill for about half a mile and the clutch cable snapped. Thankfully Audrey and another kind soul were on hand to push me accross the junction on which I had now brought traffic to a halt in all directions.

After a reviving cup of hot water, lemon and honey (I've learnt my lesson) I left again in Audrey's car to collect the boys. Audrey, you are a true friend and an inspiration. Hugs.

To add insult to injury, when I eventually arrived at mum's, she happily informed me that Dan slept until half seven and Ben didn't make a peep until after half eight!!

I've kept going til now by not sitting down and just pushing myself to get what I need to get done for tomorrow. And of course now that I have sat down I can feel the pain in my left leg and realise I'm seeing double when I look to the left.....

Not good, need sleep.

How did that happen?

So here I am, married, 2 gorgeous boys, own teeth, own hair (well not strictly true, but L'Oreal Dark Reddish Brown is so much more flattering than mousey with grey bits..) and, since June 2005, it would appear a neurological disorder. Although my consultant reckons I've had Multiple Sclerosis for at least 13 years!

But the really weird thing is that I was probably more informed than the average Joe about MS. To cut a very long story short, my mum worked on a hospital unit that dealt with neurological disorders (including, obvioulsy, MS) and would regale me with the latest antics of various characters treated there . At uni I helped a friend make a film about MS sufferers being treated in a decompression chamber. And then a friend was diagnosed a year before me and, armed with knowledge I'd picked up from my mum and the patients I'd filmed, told her confidently that this was not the end of the world, that MS didn't necessarily mean she'd end up in a wheelchair. Little did I know that 12 months later I would be calling her for some words of comfort as those two little letters crashed into my world. "Darling," she said in her best posh voice (as apposed to her normal posh voice) "I refuse to call it by it's proper name so from now on it shall be known as More Sequins. Now go and drink some champagne, I've done lots of research and can assure you a few bubbles won't harm you in any way." Needless to say, I took her advice.

It's taken the last couple of years to come to terms with this More Sequins thing, and I'd be lying if I said I haven't thrown a few pity parties in that time. But I quickly found out that nobody actually comes to a pity party so I had to accept that life would be a little different from now on. I've finally got round to changing my lifestyle and am working through Tessa Buckley's excellent book The MS Diet, which I have to say I baulked at when I first read some of the suggestions in there. For example the Best Bet Diet is not for the faint-hearted. It would be quicker to list the foods you can eat. Not that I'm knocking this diet, it's helped thousands of people with MS, it's just that I've got no willpower when it comes to food. Also, there are differing degrees of MS and I'm fortunate that I have relapsing remitting - although there are no guarantees that things won't get worse. But hey ho, if it means I may have to forego caffeine and dairy in order to have the energy to play with my two little cherubs then so be it. I'm sure I'll get a taste for herbal tea at some point in the not too distant future and be able to finish a cup of cammomile without looking like I've swallowed a wasp. I'll let you know how I get on.....