Mum With MS

I am soooooooooooooooooooooooooo rubbish!

So... I thought I wasn't subscribed to my blog anymore and thought I'd just better check.....and here I am!!!! 

It seems I have been existing in the ether of the interweb all this time.  I really must get my head around this blogging thing properly, I mean I'm supposed to be a writer for Cliff's sake!!!!

As you will no doubt have discovered by now I have commitment issues.  I say one thing and blatantly do another (which if I'm honest is generally a big fat nothing).But I have been busy.  Ish. 

I've been on clinical trials for a new drug being used to treat relapsing remitting MS.  I was so looking forward to seeing if this drug would perform some sort of miracle and allow me to get on with life a bit more.  Admittedly the biggest attraction was having a legitimate child free day (the infusion took 4 hours plus bloods and other tests) but I was also feeling altruistic helping medical science in search of a cure for MS.  Imagine my disapointment when on the first day of having an infusion I break out in huge allergic reaction after about an hour - covered in bright red rash and starting to feel a weird tightening in my throat.  Needless to say they stopped the infusion straight away and were under no illusion that I was having the drug (it was a blind trial).  I'm still on the trial so go in for brain scans and blood tests every month. 

I find MRI scanners strangley soporific and always start snoring within about 10 minutes.  I did one of those falling asleep jolts last time I was in and I thought they were going to have to start the scan again!  And a couple of tips for anyone going for an MRI.  Remember to shave your legs and paint your toenails.  And never wear socks.  They just don't go with the gown.  You either look a bugger with them on or end up with a telltale line around your ankles.  Usually at different heights. 

Where was I?.....

...oh yes. I'm not very good at remembering to do this blogging lark.  Have promised myself I will be more vigilant in future.  Don't hold your breath!

Well where do I start?  In a nutshell I've fallen off the wagon and keep having cappuccino's in Costa Coffee when my mum has the kids and may have fallen on the odd piece of carrot cake.  The worst part about it is that I do feel worse.  When I was going through my newly converted smoothie for breakfast, salad for lunch, and something dairy free for dinner routine, the weight fell off. I felt like I had bags more energy and I may have even been a bit less narky.  It's willpower with me.  Or boredom.  I think I may be a bit bored.  I mean, I love my boys wholeheartedly, but Ben is now going through the dawdling and whiny stage and throws a wobbly every time I ask him to perform everyday tasks such as washing hands or cleaning teeth.  And there are only so many times a day you can say "Ben, leave Dan's hair alone, stop pulling it," without pulling your own hair out.

He's got a real thing about hair.  Since he was a baby, Ben has played with my hair but now he does it with all and sundry.  No-one escapes his twiddling fingers.  It would be really endearing if he didn't pull it as well.  He doesn't yank a handful, just tweaks a couple and it REALLY hurts.  And it's REALLY annoying.  He's got a shoe fetish too but that's a whole other story. 

I keep wondering if I'm not taking this whole MS thing seriously enough.  The Husband has had several well meaning digs at me about taking care of myself better.  But I like wine.  I like chocolate.  I especially like crisps.  I'm not that keen on exercise.  I'm my own worst enemy.  

I once went to see a comedy called Frank Farmer's Pants.  It was a sketch show and one of the characters was called Can't Be Arsed Man.  Everytime the not-so-super hero was called upon to help, he would show up with compulsory tights and cape and apologise to the victim saying "Well, I would help....but I can't be arsed."  That's pretty much my approach to MS.  Yes, I know it isn't healthy, so I intend to change my ways.  So from now on I will eat better, do my core stability exercises with my Swiss Ball, and endeavour to do 3 sessions of cardiovascular workouts per week.

I hate being married to a sports scientist.

A lot can happen in 4 months.....

Doesn't time fly when you've got MS!  Can't believe it's been so long since my last post.  Very remiss of me.  

Since I was last here I have had a little relapse but all in all been feeling, well, average.  How dull is that?  I've tried to be one those people who 'fake-it-til-they-make-it' (You know the type.  Whenever you ask "And how are you?" they bedazzle you with their smile and say "I'm great! Yeah, doing really well, feeling on top of the world!!" ) but trying to keep up all that positive energy completely wears me out and I end up in a heap on the floor after 3 days of it.  I've decided that the best response to the well meaning "How are you?" is a dramatic pause, a rub of the chin, and a vague "I don't want to commit myself right now...." 

But the biggest decision I have made since being here last is that I have handed in my notice at work.  It was a  toughie as I had a well paid, part time job with a fantastic boss, but in the end, health and sanity won out.  I was finding it harder and harder to keep the energy levels up, traipsing the kids around to be looked after by mum and then schelpping off to work, on my feet all day teaching overexcited primary school children how to make film and television programmes, that in the end I just ground to a halt.  After long discussions with The Husband it was decided I would call it a day, and I have to admit I feel better for it.  Although I do still have the odd numbness and tingling and need to have a kip most days to get me through, I am feeling better.  We're beyond skint, but hey-ho, there's more to life than money.  Not sure what, but I'm sure there is....

I fancy myself as a writer of children's books and have managed to discipline myself to sit down twice in the last few months and write something.  The end result isn't that bad, even though I do say so myself, but I don't think I'll be paying off the mortgage any time soon.

Oh, and we've had the Dyson fixed.  Very nice man came at half past eight one Saturday morning with his own Dyson rug to cover the carpet.  I can now vaccuum the house in one go!  Unfortunately I now realise that it is hard going doing it all at once and it took a while to recouperate after my first enthusiastic whizz around the house.  Not sure which was worse, coping with the fatigue or having to admit to The Husband that he may have actually been right about it being better when the Dyson cut out all the time so preventing me from housework overload. 

I hate it when he's right........

Lost In Translation

I watched the film of the above title last night. V funny, but nothing really happens. Unless I've missed the whole point. What did occur to me though, is that this is very much how my life has been during this relapse. Months of not very much happening and yet life still grinds out the days without so much as a please or thankyou to those who aren't quite up to the task of being actively involved in the day.

Before you think I'm feeling sorry for myself, I'm feeling quite the opposite. I think I may have learnt over the last dark weeks that 'stuff' doesn't matter. This was no big epiphany. Rather a dazed tut as I was looking out of the bedroom window with Ben as the recycling bin men (they're probably called something more PC nowadays I'm sure) emptied the green waste bin.

And while we're on the subject of bins, is it just our council that are bonkers when it comes to sorting out which bin has what in it and on which day they are collected? On red days we put out our green coloured wheely bin that contains household waste. On green days we put out our brown bins that contain green waste. We also put out the red box that contains plastics. Is it me?

Anyway, felt a bit better over the last few days so hopefully I'm coming out of the gloom. Just feeling sapped of all energy hence the lacklustre entry on todays blog. Off to bed. I have a date with an electric blanket and a duvet and I don't want to be late....

Symptoms, symptoms everywhere.....

So....I ran around the house like a loony on Monday morning getting Ben ready for pre-school, and then of course he needs the loo just as we're heading out of the door. When I say he needs the loo, the truth is he's still in nappies at the grand old age of 3, (I KNOW!!!), so we were delayed getting out of the door. Dan was virtually thrown into his seat and we hot tailed it so we wouldn't be late for the first day back after half term. My Passat kept pinging telling me it was -1 degree outside. Luckily for me I didn't have to do any scraping or de-icing as the car is parked on the drive near the outlet for the central heating and since our system is so inefficient and we don't have cavity wall insulation, so much heat escapes from the house resulting in the prevention of ice formation. Anyway, we drove carefully, keeping to the speed limit at all times (I once met a police man whose favourite phrase was "It's called a speed limit, not a speed target...") and arrived only 5 minutes late. Only to discover I was the only person there as it was a training day. I'm pretty sure they must have told me, and it only adds to the long list of Fi Fi Forget-Me-Not (kids' programme, a character who always forgets stuff in case you're wondering) moments in the last few weeks, including me completely forgetting to take Dan for his jabs. By this time my hands had started to seize up. By the time I drove home I was having such bad pins and needles I couldn't get my daft digits to do essential tasks like unbuckle Dan's seat belt. Then I had shooting pains in my leg and finally the fatigue kicked in.

I managed to drive to Person Without Whom I Would Be Lost's house (Audrey, you're a star as always) and she and her lovely hubby Phil rescued Dan from his seat, got me and Ben in the house and watched me like a hawk until I felt able to go solo again.

I'm so blessed to have such supportive friends on my doorstep.

I'm thinking of moving in with them....

Vaccuuming for the MS patient

One of the plus sides of having a condition that leaves you exhausted, as well as having 2 small children, is that people don't frown because your house is a tip. It's a given that the physical strain of brandishing a duster and vaccuum cleaner is too much for someone who has spent the morning playing hide and seek with a 3 year old and has a neuroligical condition with symptoms including fatigue. But there comes a point when no amount of turning a blind eye will conceal the fact that the house needs a damn good vaccuum.

So.....I got the trusty old Dyson out of the cupboard under the stairs, dusted it off (is that irony?) and determined that the 2 and a half hours that Ben was at pre-school would be spent trying to clean the house. After around a minute, the Dyson cut out. So I had a little rest. After about 10 minutes I tried again. Same thing. So I had another little rest and sang Row, Row, Row Your Boat to Dan. I'm still not sure about the new fandangled version of this children's classic with the "If you see a crocodile, don't forget to scream..." at the end but Dan seems to enjoy the screaming bit. Although it really is more of a shout that he does. Anyway, I managed to Dyson the upstairs in about an hour and a half after more than several stops and starts.

When The Husband got home, looking it has to be said like a broken bag of biscuits, I was surprised to discover that after a long day at work and an evening coaching future football stars he wasn't really in the mood to spend any of his precious half hour before it was time for bed following instructions on the troubleshooting page of the Dyson website figuring out why it kept cutting out.

"Besides," he said with his best concerned face on, "It probably helps that it keeps cutting out because then you can't do the whole house in one big go and wear yourself out. You know you shouldn't overdo things."

He really is quite brilliant.

A Little R&R

So... I've not been feeling great the last few weeks. Overdid it Christmas and New Year and now paying the price. A few disturbed nights with a sore leg has meant that the fatigue has been nigh on crippling. You know when you start a sentence and then for the life of you, you have no idea what you were going to say. And you walk about thinking "What on earth am I supposed to be doing?" Mind you, that does sound like my mum on an average day, so maybe it's age rather than my neurological condition.

Anyway, things came to a head yesterday when my right Latissimus dorsi went into spasm. (It's that big muscle under your shoulder blade and I only know the Latin name because I bought The Husband a huge mug with a rather fetching design of the human skeleton and muscles. Thought it might help him when he was studying for his coaching science degree.) It was pure agony. The nearest I can compare it to is having contractions during labour. Which will mean nothing if you haven't had the trauma of squeezing a baby out of a very small tunnel. I may have screamed. Anyway, The Husband was marvellous, despatching the boys to our dear friend Audrey (where would I be without you? xx) for the day and he took me to see my lovely GP who prescribed diazepam and rest. I haven't slept so much since I was a student.

This is the 3rd time I've had these spasms and I'm not sure if it's MS or some sort of anxiety attack that brings it on. Whatever the reason, I was so grateful to be zonked out and spent virtually the whole day asleep. The boys have now been packed off to Grandmas for a couple of days whilst their mother feels like a stoned hippy. I have a strong urge to listen to the Mammas and Pappas.

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.