Well it’s been over three weeks now since the Botox treatment and still no change (not that I’m getting inpatient or anything!). In my Neurologist’s experience if people are going to respond it will be within two to three weeks. Frustrated is not a strong enough word! I did have a moment the other day when gravel didn’t make me want to pass out or vomit so I did get quite excited but that was followed by two days in bed – bit of a bummer! My insomnia is back so I’m so exhausted during the day I wouldn’t even know if it was working or not, it’s like I’m sabotaging myself!

I have managed to do some baking which has been a good distraction. I’m loving sweet stuff at the moment. I don’t think it’s helping my mum’s boyfriend’s diet though 😉

I have also done some swimming which I absolutely love. I get very annoyed this time of year as it gets full with people starting new years resolutions – don’t they know it’s my personal pool? Although I got there the other day and it was empty apart from a man getting out wearing a wetsuit! The heater had broken and it was a tad chilly. Because I’d driven all that way there was no way I wasn’t getting in so I had the entire pool to myself which was great. I then sat in the sauna for three days trying to get rid of the brain freeze. Maybe the submersion in cold water will do something to my mental brain and fix me – you never know? Do you think I’m getting a bit desperate? 😉

Well here I am again a year later feeling pretty awful wondering if this will be the year I crack this God dammed awful illness. I say crack, just a slight improvement would be quite refreshing. I had the Botox injections nearly three weeks ago. I was so caught up in what may or may not happen after the procedure I hadn’t really considered what it involved. 31 injections into your head isn’t exactly pleasant but most normal people would have figured that out before having it done. I clearly remember having the first one and thinking ‘that pangs a bit – oh well only another 30 to go’. All in all it doesn’t even nearly compare to dealing with MAV on a daily basis. I told my consultant I’d inject it into my own eyeballs if I thought it would do something positive – he didn’t suggest it.

So Christmas has been a bit of blur to be honest, too preoccupied by thoughts about if this treatment will be the one to actually do something. I’m so all over the place I don’t know whether to cry, scream or just drive straight to Beachy Head (as if I could even get myself there!)!

At least you know the JobCentre can always be relied upon to bring good will to all men over Christmas. Threatening to stop my benefits two days before Christmas because I have been too ill to attend a mandatory course is almost funny – I had been kind of trying to tell them this. I did have a lovely Christmas day with my family you can’t beat playing ‘Who Am I?’ after a few glasses of champagne. My lemon tart went down quite well – good old Mary Berry!

Anyway, although life has been extra hard of late I guess I have to remain positive that things will change. Fingers crossed that this plan works 😉

Yes, this is what I now look like – amazing stuff Botox 😉

Well you have probably realised things haven’t been exactly great from my lack of blog entries. I had an absolutely brilliant yoga holiday in Sardinia. The yoga was fantastic on a sun deck down by the sea with wonderful teachers. The food (and wine!) was great I’ve never eaten so much in all my life (clearly because I did so much exercise I really needed it!) . More importantly the company was exceptional I haven’t laughed so much in far too long. I managed my symptoms really well and felt like my old self again.

I really thought I had this awful illness sussed if I did small activities with lots of rest. I even considered that, maybe, what I needed was just to have more fun as, lets face it, I’ve not had a lot of that of late. Unfortunately I had that all very wrong as I completely crashed and burned on my return – it has been heart-breaking. I have hardly been out of bed in weeks I have been so ill. I have seen a new Neurologist who seemed pretty confident that he could help given time (yes more of that!). He has changed my drugs and to be honest the last 5 weeks have been horrendous. Coming off  one of my drugs has been like I’ve had the  ‘Worst Hangover Ever’ on top of my usual fun and games. Sadly, I’ve not had the pleasure of drinking three bottles of red per night – perhaps that should be my next plan of action!

So here’s hoping that my new Neurologist’s plan works. He actually uses Botox with quite good success in some patients so I’m going to give it a go. I’m really hoping it will have a positive effect on my symptoms. I can’t get too excited as I’ve been disappointed too many times with failed treatment plans.  On the positive side a bit of Botox makes me wonder if I will start getting ID’d again!

My next appointment (when I have the Botox) is not for a couple of months so it gives me a chance to get over my bad patch and start the newly prescribed drugs (joy!).  In the interim I’ll just have to stick to my friend Karl’s suggested therapy of ‘One Person Helps You Stand On Your Head Whilst The Other Spanks You’.  You  never know it could catch on! 😉

Well I’m off on my Yoga holiday. When I went last year it was the best I’d felt since becoming ill and I have been counting down ever since.

I think Yoga has been amazing for me for the following reasons:

1. My stupid brain (which has a hissy fit about most things) actually allows me to do it as long as I’m sensible
2. I’m now far more flexible – It’s now so much easier to paint my toe nails!
3. It calms me down when I’m feeling stressed
4. It gives me a sense of achievement managing to do some Yoga even if I manage little else in the day
5. I now don’t have to ask random strangers to help me out with sunscreen on my back!

I don’t think it was just the Yoga that made me feel good it was the amazing people I met. I feel so lucky that a lot of the friends that I made last year are heading back. I think you can underestimate how spending so much time on your own pondering your lot can be quite bad for you. I can’t wait to catch up over a nice mojito by the pool! Speaking (or writing) of mates and cocktails we had a couple for Steve’s Birthday – you’d never guess look at those rosy faces 😉

I just hope I can make it through the airport alone. I have to admit I’m really bricking it. You have to laugh, most people are fearful of actually getting on the plane – I’m just terrified of the actual airport! I can’t even have a quick GnT if I get into trouble. You couldn’t exactly be annoyed at airport staff for putting two and two together with me smelling of alcohol and falling over. Keep your fingers crossed for me!

I think Harry has his own version of Downward Dog 😉

Just what you need from the Job Centre when you can hardly get out of bed. They have got to be kidding right?

#almostfunny

Well things have been a bit up and down this week in so many ways. Good days followed by bad days. Lovely moments which then crash and burn. The feeling like I’m literally going up and down as if on a boat in a storm which is how I’m feeling as I’m writing this. God I hope we get to port soon!

I went for a lovely picnic with my Father at Ivinghoe Beacon. It was beautiful, peaceful and a perfect opportunity for a good chat and a catch up. It was all going swimmingly until his suggestion that I get a caravan at the bottom of my Mothers garden to give me a bit of independence – not one of his better ideas. I was literally speechless!

Don’t worry, if that time comes when he loses all his independence and really needs me I’ve got his place reserved at ‘ I’ve Sat in my Own Urine for Three Days but I’m Happy About it Because I’m Eating Blamange Again Nursing Home’ – what goes around comes around 😉

Fortunately I was reminded that I have some good friends. Yes, I guessed who sent the anonymously sent Furniture and Cabinet Making magazine straight away (it’s actually more interesting than it sounds). He clearly has a direct line to my Father for a little renovation work on the caravan!

It has also been really helpful to get support from fellow MAV sufferers – I think it really helps knowing I’m not alone in going through these ridiculous debilitating symptoms, thank you 🙂

It is so frustrating that I can do 40 lengths in the pool with no difficulty but a trip to Boots floors me for the rest of the day. This little old lady asked my for my help to find a lipstick for her and I couldn’t say no. It was really hard for me and made me feel quite ill, I bet she would feel terrible if she realised. I found it though!

Oh well, at least there is always Mary Berry (I’m not even supposed to eat this but bugger the MAV diet!)

Still, better than my Mothers effort 😉

I don’t know about dreams but a good GnT would do 😉

Oh dear God the last few days have been rather a challenge that’s for sure. I’ve hardly been able to get my head off my pillow. I think I may have jinxed it by daring to think that things were getting better.What’s so frustrating is I can’t even identify the cause as I have been so careful. It’s not like I’m doing a lot – my days are extremely dull!

Feeling so awful it was quite annoying to get a letter from the Job Centre with a mandatory two week programme to go to next week (great notice!). Basically you’re not long term sick anymore you just lack the motivation and skills to get a job so they give you a helping hand or else they stop your benefits (which are bugger all and have only just started incidentally!). I called up to say I was too sick to attend but after talking to about 29 people who repeatedly told me that their system said I was well enough (that must be one hell of a smart computer system!) and that I had no choice it was starting to get annoying.

It was so frustrating explaining that I’m on this ‘course’ because I’m sick so how can it be that shocking to them that I’m too sick to attend? I eventually got through to someone who had a brain and she saw from my notes (nobody else had bothered to actually look!) that I had some ‘slight mobility problems’ (that’s one way of describing being confined to bed for four days!) and visual difficulties. She realised it was all a bit crackers in the end and said I could do a phone interview instead.

The phone interview was pretty amusing as I was laying in bed at the time unable to get up. ‘So on a scale of 1 to 10 what is your motivation to look for a job?’ – hmmmmm about zero because I can’t actually imagine working as I can’t get off my bed and what’s the point when I have one already waiting for me? It all got rather silly especially when she was trying to work out what skills I would be required to learn to make me more employable when you have all the qualifications I have.

So things have been pretty awful made worse by (when I could actually manage to get out of bed) putting my bright red shorts in with my washing and turning my clothes pink. I’m strawberry blonde I can’t do pink!

That was topped off nicely by wondering why my face cloth keeps looking really grubby all week (I changed it frequently) and realising that the guests we have staying with us have been using it to clean the bath with once they have finished. Nice!

So feeling better today my Auntie took me for a trip out to Primark (don’t judge me I have no money and I don’t do pink!) for some shopping and then out for lunch in a beautiful setting with a nice view of the A41 something – I don’t know why this view doesn’t feature in more postcards of the local area? Good steak sarnie though 😉

Oh and just in case anyone from the Job Centre stumbles across this site and gets excited about me going out for the morning – dont worry I’m paying for it now and I don’t know how long for but trust me, I want to be out of bed much much more than you want me out of bed!