I had the best birthday ever! Not only was it the best I’ve felt on a Birthday since I’d become sick (last year I was a total mess!) I had a lot of surprises (to put it mildly!), cards and visits.

The big shocker that I still can’t get my head around is that my friends have clubbed together and booked for me to go back to Sardinia Yoga. Not only am I shocked about how generous everyone has been (and pretty secretive!) but I’m totally overawed that my friends have realised just how important going to Sardinia is to me. It is the one place I have been able to feel like a normal person and not an invalid. The yoga has really helped me cope with this illness both physically and mentally. I still can’t get over it and I am welling up just thinking about it. I may have been dealt an unlucky hand with my health but I have certainly been blessed with some amazing friends. Thank you so much, I’ll never forget it 

I managed to go for another walk last week in a place that actually has tics – I was pretty careful, I’m not getting bitten again!

On the illness front I’ve had a blip for the past couple of days (I think I’ve had way too much excitement!), I’d be lying if I said I wasn’t a little terrified. I’ve started another course of antibiotics so the pattern so far is that I pick up a couple of weeks into them. So I have to stay positive that in three weeks I should be back walking around the park. Until then I’ll focus on Sardinia – is it too early to pack there’s only 125 days to go? 😉

I’m now on the third week of the second lot of antibiotics (if that makes sense, I’ve done six weeks of antibiotics in total) and dare I say it, I’m doing quite well. Now the nausea is settling down the vertigo has been so much better, and I’d take nausea over vertigo any day!

I’ve had blood taken at The Hospital of Tropical Medicine that has come back positive for Anaplasma Phagocytophilium (yup, I had to Google that one!). It’s a co-infection, spread by tics and is commonly passed on at the same time as Lyme disease. I’m not entirely sure what this means for me, apart from its looking like the Lyme diagnosis is more and more likely. Oh and that tic was one nasty little so-and-so!

I had a lovely visit from Soph where we turned my kitchen pretty much into a sweat shop making dresses.

I have finally finished my 60’s dress and I can’t wait to wear it.

I have managed to do lots more. Including going to the cinema which is something I’ve not done for a lot of years, and if I’m being honest I was pretty scared to do. I was so happy that I managed it without incident or paying for it after. Although, in hindsight seeing ‘Still Alice’, a film about a bright woman whose life tragically changed after illness was perhaps not the most sensible of choices – a bit too close to home!

I even managed to go for a walk the other morning and felt fine, well apart from looking like a loon grinning and taking pictures of where I’d manage to walk of course!

Today, I even managed John Lewis with absolutely no vertigo at all. I feel really happy (I’m not sure my credit card is quite so thrilled) although a little shattered after, but I think even 100% fighting fit people feel done in after a visit to Milton Keynes!

God I hope this lasts!

Well since the last post I’ve been in a total mess. My vertigo has been the worst it’s ever been, I’ve been mainly confined to bed – a trip to the wheelie bin two metres away from the back door was quite an achievement yesterday!

I have been enrolled in a sewing course and I’m looking forward to seeing how this will turn out – I’ll keep you posted.

My poor Mother is forever thinking up activities I can do that won’t take up to much energy to try and save my sanity – I even did a flippin jigsaw puzzle the other day! I have also been trying to brighten up my life in other ways.

The Yoga Girls certainly cheered me up, who can’t laugh with Prosecco, Dolly Parton, Moon walking and versions of ‘Everything is Awesome’ from the Lego Movie until three in the morning – I’m sure my neighbours were thrilled!

I have had some news though. The Hospital for Tropical Medicine wanted the opinion of a Doctor who specialises in Lyme to see what to do with me next. I was prepared to pay as this has gone on long enough but it turns out all the money in the world won’t help me as the NHS has pulled funding of his Lyme clinic so now it doesn’t exist – I know, just to make things a bit more fun! Fortunately he contacted me and after discussion with the Doctors at the Hospital feels that a trial of longterm antibiotics is worthwhile, seeing as it’s the only blood test to come back positive and the only treatment that I have responded to. So today is day one of a three month rotating course of antibiotics. This has to work – I’m seriously out of options and more importantly patience!

Well that appointment was rubbish. I started to deteriorate again after coming off the antibiotics which to me made me think that this was the key, I just need to be on them for longer. After getting my hopes up that I’ve finally cracked it I left that hospital absolutely devastated not feeling like I had that many options.

I was told that three weeks antibiotics was sufficient to treat Lyme disease (very controversial) and was discharged from their care. I did argue about guidelines being just that, guidelines and that surely treating according to how the patient responds is more important but it fell on deaf ears. I felt completely ignored, the decision had clearly been made before the appointment and It really didn’t matter what I said. I am being referred to another doctor who has more of an interest in Lyme but the earliest appointment is April and I was led to believe that his treatment (or lack of it!) would be the same. What am I supposed to do until April, haven’t I wasted enough of my life?

Fortunately my GP is really on my side and has given some good advice. I feel better now that I have been proactive and contacted some people more experienced in Lyme explaining my story to see what their opinion is. I can’t accept that this is it for me!

So I have been pretty low (to put it mildly) but managed to distract myself with my sisters Christmas present to me – a polka dot knickers making kit! I think pants pretty much sums it all up nicely!

Well Christmas was fun. It was actually the first Christmas since the illness where I’ve actually fully joined in and not had to go for a sleep or leave early. We had a lot of fun at my cousins, we even had some special guests popping in.

New Years is a difficult time of year and I’m sure I’m not alone in feeling that way. This is the forth time where I have hoped that this will be the year I get my life back and each year gets a bit more difficult. Fortunately I was once again surrounded by friends and family and there is always enough drama (and Prosecco) going on to allow you to forget your problems for a while.

I’ve been doing really well apart from the insomnia which is really catching up with me at the moment – I’m really losing my sense of humour! I’m being extra healthy after my months of the ‘Dairylea on Toast’ diet. I’ve even bought a juicer, not my usual (or preferred colour) for a Saturday night. Is it bad that I followed that with a GnT, or is that the definition of a balanced diet?

I have been doing loads of yoga, Pilates and if I do anymore swimming I think I’ll develop gills. It feels good to be off the medication which furthers by belief that this isn’t all migraine and something interesting is going on with the Lyme thing. Also, I pick up every time I have any antibiotics so it really is most odd. I see my consultant in a couple of weeks and it will be interesting to see what his take on it all is.

Oh, soph and Hayden cheers for the Spirulina powder it’s an absolute delight to take 🙂

Well the last few weeks have been utter hell. I’ve come off some drugs that I’ve been on for years and I’ve been like a drug addict going cold turkey. Nausea, exhaustion, aching, insomnia (or nightmares if I do actually sleep) not to mention the worst vertigo ever – not fun at all! Things can only get better.

Needless to say Christmas shopping hasn’t been high on my to do list. Thank goodness for Amazon and a little creativity. I just need to fill them with something or my cousin’s boys may be a tad disappointed!

I did manage to go to the local last night for some Christmas carols so I’m not a total grinch 😉

Right, time for a massive glass of mulled wine – don’t worry it honestly is a tiny tree!

Happy Christmas xx

Well, I only have three days of IV’s left not that I’m counting or anything! I would be lying if I said I felt better. It has been a real challenge, having my head down the toilet for most of the time but it will be worth it if it works. The ‘Hospital at Home’ nurses have been a God send. lets face it when you feel that sick you just want your own bed (and bathroom for that matter!) so I have been really grateful that they have allowed me to do that.

I have had lots of (extra) support from family and friends, and I really do appreciate it thank you, the flowers have been beautiful.

I can’t wait to get this over and done with. I can have a shower without having to construct a massive waterproof (ish) glove with one hand every time and eat something a little more exciting that Dairylea on toast!

This had better work 🙂

Well I’ve just had a horrible two weeks which is a bit devastating, even more so after having such a good period. On the plus side this is exactly what happened the first time I tried the antibiotic treatment for Lyme disease, so it kind of backs up that it may be doing something but just for a limited time. That’s twice that I have had a really good few weeks towards the end of the treatment and then I totally crash and burn about three weeks after I complete the course. It could be a coincidence though.

I’m going into hospital on Monday to start a three week course of IV antibiotics that are more specific to the treatment of Lyme disease. Or IVF, which is what my mum has told half the village I’m starting – I think a few people are wondering what on earth is wrong with me!

I’m really scared. Not of the hospital stay, the needles or even the potential side effects of the treatment. I’m scared that it won’t work, I don’t think I’ve got it in me to go through another failed treatment. This had better work!

Well, I’ve had a great couple of weeks. I’m even starting to dare to think that the antibiotics are actually working because it is Lyme Disease after all. So many people (some of who are unaware that I’m even sick) have commented on how I’m looking better. I’ve had lots of friends come for visits and although I’m always a bit worn out afterwards it has not been for days or weeks which is generally how things go. It has been so great to feel a bit more normal.

The Elphic’s and the Bradshaw’s came for a family outing and Zara made sure I didn’t miss out on desert (I had been a very good girl after all) and got me a Punky Penguin.

The Yoga girls came for a reunion where we did absolutely no yoga (as usual) but drank lots of Prosecco (err as usual) and ended up all joining in with a singing Mexican wave in the local pub (not so usual!).

Soph came for a couple of days bringing a nice bottle of Cremant from Paris (did I tell you she’s my favourite?) and we had a great time getting bargains in the local charity shops and making pumpkin soup. The kids almost knocked me over grabbing sweets on Halloween – who knew four year olds were so strong, it’s amazing what a few kg’s of sugar can do!

I just really hope this good patch continues. It looks like next step is IV antibiotics for a while and see if I can get this thing shifted once and for all (if it is Lyme). I hardly dare imagine what life would be like if I get better as I don’t think I can cope with another wasted journey. I’m so excited about potentially being able to go for a walk without drama or going to a shop and not having to do a super market sweep style grab and run before I pass out. Once more, fingers crossed!

Well I have to do something for my British Bake Off withdrawal symptoms 🙂