Still on that boat…

Strawberry blonde in a dizzy world!

All very well but…

July31

 

…if someone says that to me right now I will punch them in the face and tell them ‘oops sorry I made that mistake but I’m only human and now at least you feel feel alive – hope you feel better soon’ 🙁

 

(Image stolen from a fellow Lymie who is trying to be supportive to everyone suffering and I’ve just been a miserable so and so!)

Are you having a laugh?

July30

I’ve had the headache from hell for over three weeks now and it is awful. I went to my local surgery to have some ‘safety’ bloods done – yeah that fills you with confidence right? Anyway, I looked so awful that the nurse said I needed to see a Doctor. I explained that I really didn’t think that there would be much that they could do but she insisted and I was right, nothing could be done to help. I’m already on maximum doses of the medications they would put you on for my cervicogenic headache – yeah worked out what it is between two doctors and Google. I then went to the receptionist to book in for my next blood test and she then said I should see one of the doctors as I looked so awful. It’s like busses, you can never get an appointment and then offered two in one day! It was really good that they were trying to help though 🙂

So I’m basically stuck with this headache that isn’t just a headache it’s like the mother of all hangovers. I couldn’t even stand long enough to heat up some food in the microwave the other day as it gets worse the more I stand or move. So I can hardly move my head but on a treatment that makes me sick – hmmmmm life not playing fair at all!

 

Hands up if you wanna vomit but…

July21

…the drugs that you have just taken are too important and expensive to do so!

 

 

Thank god for gluten free pasta

July20

Well, things are bloody awful. I feel so sick I can’t even open the fridge as the smell of pretty much anything makes me retch. My head and neck are still killing me and when it has been over two weeks you do start worrying that it will never end. Especially since nothing helps it, I only get some relief from ice packs and hot water bottles.

I have to eat when I take the antibiotics and the only thing that has worked so far is pasta and pesto. I’ve had that every day this week. It keeps the tablets down but the nausea comes back not long after. I went to bed last night (after taking a zillion essential tablets) taking deep breaths and saying to myself ‘don’t be sick, don’t be sick, don’t be sick’. Not the most relaxing way to go to sleep!

This morning I feel like I’ve had about four bottles of red wine and not the good stuff! God even mentioning wine is making me want to hurl. I guess I have just got to focus on the end game.  🙁

Oh and looking for images of vomiting was a really dumb idea!

Bring me some beef flavoured Hulla Hoops now please :-)

July14

I want to feel like this:

Unfortunately I feel like this:

Well they say that with time you forget extreme pain for example during childbirth. The same thing happens with feeling nauseous. I thought it would be fine, I’d get in all the foods that help with the nausea and batten down the hatches until that part of the protocol was over. Oh how very wrong I was. I sat on the sofa all day one day unable to move, eating beef flavoured Hulla Hoops for breakfast, lunch and dinner. My Mum offering to bring around some chicken liver pate was not well received even if it was bloody home made! Blugh!

It’s ok though as I only have two more cycles of this…or so they say. I think I’m doing better than expected as I’ve not had to back off on this protocol so I’m taking that as a positive. On my weeks off I have managed to do a few things. I went to the village fete where there were floats big…

and small…

This time I didn’t have any ‘incidents’ and wasn’t going anywhere near a hospital!

It was very hard mentally as this time last year I was able to follow the carnival all the way down to the next village and walk around the village green looking at the stalls. Oh dear this does sound a bit Mid Summer Murder’ish – maybe that was a lucky escape!



I don’t think I’ll be entering my produce into the village competition:

Anyway I currently have a really bad headache which nothing can settle. I wouldn’t complain but its been ten days now. It’s not a good look walking around with a hot water bottle attached to my head and a ice pack around my neck – not to mention a tad inconvenient 🙂

It’s the downwards pressure of the string that makes me look like I have loads of wrinkles. Doesn’t it? Am I kidding myself? Someone get me a mirror now!

Yamas!

June25

Whoop whoop I made it! God only knows how as two days prior to leaving my Dr prescribed a drug to stop the shaking but it made me worse. My mum said I went into a trance and I  didn’t know where I was or even who my mum was – it was a proper trip but not at all enjoyable that’s for sure!

It was so amazing that I made it. It wasn’t looking too positive when during check in I had my head on a table in Costa Coffee doing deep breathing exercises. I looked like such a nutter, funnily enough I wasn’t asked to purchase a beverage. So when we got there it was such a miracle we totally embraced the Greek life style.

I even had a go myself. When the lady next to me asked me if I spoke French and I replied ‘un peu’ that was kind of the end of our deep and meaningful but we still had a nice dance.

It was hard at times as we were much more limited in what we could do in comparison to last year when I was doing much better. I did make it to the beach really early a couple of times to do yoga which made me really happy. Look the internet is always required (the sign in background) – hello Facebook lets show off that we are on holiday having fun 😉

The highlight of my Holiday was watching my other half trying to get into the sea with me. It was fairly wavy and a shingle beach so not the easiest to get in the sea for a swim. He was shouting ‘I’ve got soft feet’ for about half hour before finally getting in after several failed attempts.

I laughed so much I got a few good mouthfuls of salt water (probably served me right!). It still makes me laugh and that’s well needed now. I’ve started a new protocol and I want to vomit for about 80% of the day which is fun so I just think ‘shingle beach’ – I think it was one of those ‘had to be there’ moments 🙂

Shake it, shake it, like a poloroid picture, shake it , shake it (oh oh)

June16

Yeah bit random I know but that lyric from Outcasts’ song Hey Ya sums it up nicely! Well to add to my problems I have developed shaking and twitching. It’s like I’ve been plugged into the mains. It’s pretty scary but I could cope with it (well just about – knives and forks can be a bit dangerous!) if I felt better in other ways, but no, that would be all too easy.

My vertigo is really off. I’m all over the place and I almost even missed sitting on a stool the other day as the world just dipped from under me. I have also slept for days. Not the best timing when I supposed to be going on a holiday in a week.

I was having one of my random good days last week so I psyched myself up to go to Tescos. I made sure my phone was fully charged, that a responsible adult was about if I had trouble and then took a few deep breaths and left the house. I managed to battle the traffic and get to the shops. I had one of the closest parking spots to the shop, I almost did a ‘hi-five me’. I went to get my bag and realised that I had all my bags for life but no handbag. A few naughty words were shouted and I drove home. I was so mad at myself I missed the turning for my village and almost doubled my journey length. Another thing to add to my list of things to remember on the inside of my door…if I remember of course 😉

Ups and downs

May29

Sorry for the comms down I’ve been a bit too fed up with it all and I didn’t want to bore people with the same old same old. It’s certainly boring me! The treatment has been really tough and as this is my ‘break’ protocol I’m a bit concerned about the protocol being ramped up next month. I can’t even think about that when I’m feeling so pants now.

I can’t totally complain though. I had a lovely ‘night off illness’ where I had a great night out for my birthday seeing a cover rock band. There is nothing like a bit of Jon Bonjovi to make you forget your troubles. Well a few troubles caused by multiple really odd guys in stripy t-shirts but that’s another story. We still managed to have a really brilliant night out.

I also managed to get to a friends wedding. I had decided not to go as I didn’t want the pay back and the risk of a ‘power down’ was quite high. Then at the last minute I decided sod it, this illness can’t rob me of EVERYTHING and I got there just in time. It was worth it. Oh dear I was sporting the ‘eyes in different directions’ look – I don’t think it will catch on!

Things are not great now. I’m having some horrible side effects from the drugs so not only am I all over the place my face looks like I’ve had a chemical peel. My chest and shoulders have flared up with something crazy i.e. unidentifiable on Google. I look like a spotty teenagers’ forehead is on my chest. I call it my frackne (front backne).

I tried to go out the other night. Once again to try and have some normality. Big mistake this time, huge! We went to Café Rouge for the evening as we have not been out for ages. More like ‘Face going Rouge’! I had a ‘powerdown’ as soon as I walked in. Going down like a sack of potatoes meant that the ‘event’ wasn’t exactly discrete. I had to be dragged to the side so that people could get in and out – it was all very dignified! Needless to say we left and I’m NEVER EVER setting foot in there again.

So I’m not really looking forward to adding in more drugs. Fortunately (or unfortunately depending on how you look at it) I have a holiday booked.  Its slightly concerning that I can’t even make it out for dinner without disaster. Hopefully I can have a nice relaxing time before bringing on the big guns.

Total fool?

March19

This is my period of having a ‘break’ from the gruelling treatment that is my entire life. A time to get stronger before the next attack of my body with toxic drugs. The only problem is is that I’m feeling worse and worse. It’s almost funny, I have calculated that this year I have spent about 95% of my life in bed or more excitingly on the sofa watching shit shows that my pathetic brain doesn’t even remember let alone actually understand.

I’m pinning all my hopes that this one doctor can help me. Following this protocol like a god dammed desperate idiot making myself sicker and sicker and sicker thinking that it will be worth it in the long run. But just how long is this run going to be because I’m so exhausted? Does the finish line actually exist?

A move?

March9

Well the trip to Washington was both good and bad news. They have taken a step back with treatment as my body isn’t coping well. I need a couple of months where they relax my brain after the total mess that it has been in. This is good as it should give me a better quality of life for a couple of months but clearly this is period of recharging the batteries before I attack again. Previously I had wanted to go through a period of hell and be better quicker rather than prolonging the course of treatment. After 6 weeks on the sofa unable to move I can confirm this is not the way to go and there was no way that the clinic were allowing that anyway.

I managed to have fun in Washington as I was not confined to my hotel room which was absolutely amazing! We made a lot of famous friends but to be frank they didn’t have much chat and seemed a bit fake.

Bieber was not at all impressed:

The word cougar has clearly not crossed the Atlantic:

Brad didn’t even acknowledge I was even there!

Taylor told me to just ‘shake it off’

Oprah totally agreed:

and George was a total gent and we discussed it all over a cup of Nespresso (decaf):

It always helps when you are in a position of power – ‘that’s two cups of Earl Grey, a slice of gluten free Victoria sponge and some cucumber sandwiches with no crusts NOW! Oh and why does the budget not stretch to a smartphone?’.

 

So I checked out my new pad. Hmmmm it would be a shorter commute to my appointments but where would I put my veg patch?

Michael was quite happy with a good American breakfast

 

And (a slight) upgrade 😉

Nah just kiddin – he couldn’t afford the babysitting bills!

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Who am I?

Was – independent, intelligent (with plenty of dizzy moments), successful, busy, funny (depending on how much Prosecco I and the people around me had!), quite stressed out but overall happy, without even realising how lucky I was.

Now  – ? just a mess really! I was diagnosed with Migraine Associated Vertigo (MAV) two and a half years ago when my life changed dramatically. It’s a variant of migraine that means I feel dizzy and tired nearly all of the time. If I try and do anything ‘normal’ this sparks of vertigo which gradually gets worse and worse until I pass out unless I lie down for hours, sometimes days. What this means is I spend 90% of my time in bed in a quiet dark room. Normal activities like shopping, walking, going anywhere bright or busy, the cinema even visiting friends who have patterned wallpaper or a gravel drive is a nightmare!

I’m continually trying new medications, all of them with quite nasty side effects (worsening of vertigo, weight loss, hair loss and sense of humour loss to name but a few) to try and find the magic one that will work for me. Fingers crossed the one I’m on now will work, time will tell.

A good friend set up this website so I could become a ginger whinger. No I’m kidding, so people can understand what I’m going through and maybe it would help me to have a bit of a rant. I have quite a dark sense of humour, I think that’s the only reason I haven’t gone completely bonkers! I clearly don’t have the most exciting of lives but I live in a small village with some entertaining characters and I’m always having blond moments (I blame the meds but I’ve always been a bit dappy!). Who knows I may even get better, and I can assure you life will be filled with amazing adventures then!

Scrap that! After zillions of Consultants all saying that they know what’s wrong with me and that they can get me better. Endless drugs and procedures I was finally Diagnosed with Chronic Lyme which was great – until I find out that nobody in the UK has a clue how to treat it. That complicates things some what 😉

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