Still on that boat…

Strawberry blonde in a dizzy world!
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Hazardous shopping

January9

Well today I managed a trip out to Dunelms whoop whoop! It was a risky choice with my current penchant for spontaneous Greek nights and having previously passed out (didn’t break my plates that time!) there a couple of years ago. I did consider going to a different branch but instead went for the ‘wear a hat and keep your head down’ approach (no fake moustache). So I managed it with a few wobbles and got home feeling pretty awful but now proud that I’m saving the environment from my excess paper plate usage – just kidding!

I’m upright. Small steps 🙂

Another wonderful New Year ahead I’m sure ;-)

January6

Going to bed with a cup of tea at 11pm on New Years Eve and then waking up with a migraine is a great way to see the new year in. Hey, should I have expected anything else the way that things are going?

My life is like groundhog day (got to love Bill Murray!). The only variations are bed or sofa? bed or sofa?

Things have been shit shit shit apologies for my language but I can assure you I’ve been using far stronger. Even had a little plate therapy due to my frustrations. It was really good, I may be on to something. I’m well past colouring therapy that’s for sure!

But on reflection I have achieved some things so it’s not all bad. I made this cake for my mums 60th birthday. She is known in the village as the ‘old lady on the bike’. Fortunately she finds it funny! I’d like to say it was just one of those things that I just ‘whipped up’ but a lot of hours and YouTube videos were used in the process!

I also did some ‘photo bunting’ and decorated the house with it. So many people got involved sending me pictures that we managed to decorate the entire house.

Everyone had to send a photo and a funny comment:

It was very sad going through all the photos  – my life was so full of potential and its all been wasted. My poor mother is still having to hold me up!

It’s been very tough and I would have lost my mind if I didn’t have support from certain people – you know who you are!

Just some advice for those of you that have friends with a chronic illness. It is so hard to make contact with people when you feel ill. You feel like you don’t want to call up and bug people when they are busy with their own busy lives. That you have nothing to say as there is nothing going on in your life except illness and you don’t want to be ‘that person’ who just complains. Phone them (they can always ignore it if they feel to too ill) or send a quick message (I don’t mean me). My friends do this and it means the world when you’re stuck in all day on your own. So go on, do it now 🙂

Adult tantrum alert

October11

 

I don’t want to play anymore it’s not fair 🙁

Open wide

September29

The muscle tension in my jaw has caused my jaw to keep locking and this has meant that I have been eating and drinking through a straw at times. Laughing is not good (not too much worry about that at the mo!). I have had to cancel my dental appointment reason being ‘I can’t open my mouth’ – the fun continues!

No chewy NKD bars for me for the time being 😉

I did have a nice trip to Spain (airBnB is awesome!) but I’ll write about that when I’m not feeling really ill as I managed well there 🙂

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 🙂

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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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