Still on that boat…

Strawberry blonde in a dizzy world!

Day 38

November27

Another duvet day unfortunately. I’m so sad the highlight of my day was having a chat with the bloke who checks the boiler. Turns out he suffered with vertigo recently and would prefer the horrific injuries he sustained in a motorbike accident over having vertigo again, no contest. it was good to have a chat with someone who ‘gets it’. I have started a new anti motion sickness patch suggested by a doctor I contacted in Germany (don’t even ask) and I think if anything I feel worse. I’ve tried so many things now and every time something is suggested you can’t help but have this little bit of hope that this will make all the difference. One day 🙁

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Day 37

November26

It’s always when I start to feel a bit more positive about things this illness just kicks me in the guts. I was so excited today to go out for lunch and had really rested up for it. It was lovely to get out, even cracked out the rug/dress that I made.

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Boy am I paying for it now though, I’m exhausted, my whole body aches I feel plastered and the tinnitus is driving me crazy. I’m not sure I’m winning this battle, role on tomorrow 🙁

Day 36

November25

Well it feels like I spent most of the day at my GP surgery, I was seriously considering taking my slippers and a thermos flask. I have to say my GP was really lovely, I really don’t know what I’d do if he ever retires. I think it helps that he has known me all my life so he knows what I was like prior to the illness and knows that I’m not just going bonkers. Everything was fine in the end though. I had to laugh when my GP took me aside and said very seriously ‘I’m going to have to apologise, you know our surgery is going all out to make you’re life as difficult as possible’. Got to love a sense of humour! It probably helped that I was feeling a little better today, I find I totally lose my ability to cope when I’m feeling really ill but today I found it all quite amusing. I hope tomorrow is like today…or better!

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Day 35

November24

One week to go! It was so nice putting the last lot of drugs into my organiser, I’m not even going to think about the very high likelihood of repeating this in a few weeks time and concentrate on the Gin and Tonic at the end of this treatment! I managed to go to yoga this morning which was fab to try and do something vaguely energetic after so much sofa time. I even got a ‘well done’ from the instructor which really pleased me, I think that was the first time in three years – lovely but a hard task master. I know yoga is not supposed to be competitive but I managed something that nobody else could do, it just made me have a little chuckle to myself and confirm that my body isn’t quite ready for the knackers yard just yet!

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The bad news is I’m getting a cold (like most of the country expect!) which is hardly surprising considering the state of my immune system. I can cope with the cold I just hope it doesn’t impact on the vertigo to much. Bring on the Lemsip 🙂

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day 33 & 34

November23

A lot of Netflix value for money has been achieved this weekend. I’m not actually doing to bad on the vertigo front but I’m having a lot of headaches. Only about a week to go now on this treatment. I’m not sure what I’m counting down to exactly – hoping its to a (long!) period of good health…if not at least I can have a GnT!

 

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Day 32

November22

I went to yoga this morning which was great. it was much easier than usual because my yoga teacher had had a bout of vertigo (poor woman!) after an ear infection so a lot of it was done sitting on the floor – nobody can relate to needing to do that more than me! I was pretty pleased with myself for managing it.

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It has to be said considering I’ve been on and off antibiotics for over a year now my stomach has done really well. I kind of put it down to having a strong constitution from when my parents divorced and I had to endure weekends of dads ‘cooking’. He had this habit of not using up what was in the fridge unless it was almost walking out by itself. I think it has left me with a pretty cast iron stomach to deal with the abuse I’m giving it now 🙂

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Day 31

November20

Yay I got dressed. My head has settled down a lot thank goodness. I even managed to get to my massage and I really didn’t think I’d get there this time yesterday that’s for sure! Still taking it easy as I can’t cope with another day like yesterday. I could just do with a bit more quality sofa and tea time 😉

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Day 30

November19

Another awful day. I managed to bake a Christmas cake, going back to bed in-between steps. I don’t really know how I managed it using a copy of Delia that Noah probably used on the Ark. What was I even thinking attempting it, I don’t even like Christmas cake and I’m certainly not supposed to eat it?!?

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I found that the smell of All Spice really brings on my nausea so that was handy once my entire house was infused with it. My head is banging and the tinnitus is driving me crazy. I really hope tomorrow is better – may even manage to get dressed with a bit of luck 😉

Day 29

November18

I’m still not sleeping well, even fell out of bed the other night which is something I haven’t done since I was about two years old! Looking on the bright side I must have been asleep for a little bit to actually manage that. I felt pretty bad again today but went to the shop with my good old mum and got some food. I was called by my GP who was concerned as my latest blood tests showed that I was neutropenic and a little anaemic.

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This means that my white blood cells that help to fight bacterial infection are very low. Glad to see that all the things I have been doing to improve my immune system (supplements, herbs, diet, sauna) have worked so well! I have to avoid people with germs and colds – not to difficult as I’m not exactly a social butterfly at the moment. Thinking about it, although it’s bad it kind of backs up that I have a chronic bacterial infection using up all my resources, so maybe, just maybe, I am on the right track? The diet to improve me immune system is clearly not working, where’s that gluten full cake?

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Day 28

November17

Bleugh!

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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) eight 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 😉

 

@still_on_that_boat