Hey, sorry for the lack of updates – things have been rough and technology has let me down. I have deteriorated big time, so much so that it really scares me – what will I be like this time next year? I always imagine I will feel better in the future but I’m not worried that I’ve been rather foolish. I get let down over and over and the more I try the worse I seem to get. It has been a really stressful few months with lots of bad things happening (other than my decline) and I don’t think all of that constant epic stress and worries have done me any favours. I think even a fit and healthy person would struggle.

Fortunately for me I have been supported by my friends and family – everyone has really upped their game. I received Eunice the unicorn from a good friend and it made me laugh so much I realised how rare me laughing had become. I decided I needed to find the fun me again – yup I could fit in the cardboard box that it came in. I had a GnT with her but found out she was more of a Chardonay kinda ‘gal!

With my condition being a bit dire we decided to try something different. I have a charity MS centre close to me and it is a truly amazing place. I have been doing HBOT which is hyperbaric oxygen therapy.

You basically sit in a pressurised chamber with an oxygen mask on. Yes, it is extremely claustrophobic and not for the light hearted but I’m desperate here, I’ll do anything! The theory is that the nasty Lyme bugs can not thrive in a high oxygen environment and die yay!

It is so amazing that I often share the chamber with people with such awful disabilities and I have NEVER been with anyone that complains and I have been over twenty times now. I make sure I get my moneys worth though – my mask is on so tight that I have the imprints for the rest of the day. Sexy huh?

I have also decided to now try the herbal route. The antibiotics, antivirals, antimalarials and god know what ever other crap that I have been doing have started to knacker my kidneys. I’m drained physically and emotionally. I can’t spend any more time on the bathroom floor wishing that I hadn’t woken up – and that feeling will never get me better. It’s hard as I’ve invested so much into the treatment I have been doing but I think it’s time to be brave and jump ship. Eeeek.

I’ve got to get back to the fun me, no matter what it takes!

Well since that appointment things have been extra tough. I think I’ve been pretty much asleep ever since DC. My mobility is getting worse and worse and I’m spending even more time in bed or on the sofa than I was before the appointment. I think of what I’m going through is due to the fact I’m reducing my neuro medications but you can never quite tell when there is so much going on, there are far too many variables to be sure. I was on really high (maximum) doses of a couple of drugs and now I’m trying to reduce them and it’s proving to be really hard – my body is not happy at all! I feel I need to join Ant in rehab – at least he could make me laugh about it!

On my quest to find answers on how to deal with this living hell I went and ordered every secondhand self help book that has ever been recommended by anyone. They are currently piled up on the coffee table looking like the leaning tower of Pisa.

Most of them just piss me right off if I’m being honest. Dealing with a chronic illness which may or may not resolve isn’t really covered by most books. Think I may write my own! One book was recommended by a friend, I won’t mention the actual title as I wouldn’t want to put anybody off reading it. Someone else may get real benefit from it as its definitely not a one size fits all with these types of books. It was about how you have to basically chill out, wish for what you really want and the universe will look after you. Well, that very quickly got launched across the room with me shouting ‘no it bloody doesn’t!’. I think I’ve reached a new low point when I’m having a go at a book, that’s clearly not doing what it says on the tin. The only book that I found to help me with my frustrations was ‘The Art of Happiness’ by the Dali Lama. There are really simple suggestions and observations that have made me feel less frustrated and helped me a bit with acceptance of my circumstances. I mean, not totally – it’s a work in progress.

I have now updated my list of which three people I’d have at a dinner party. It’s now James Corden, Adele and the Dali Lama, I think we would have a really good laugh!

With the Dali Lama in mind I stumbled across a Buddhist monastery (not literary I used Google) not too far from me that where they give meditation workshops. Now if you’d told me a few years back that I’d be taught by a monk in a temple how to meditate I’d think you’d taken some sort of hallucinogenic drug and suggest YOU go to rehab! I never would have done this if I hadn’t got sick, not in a million years.

The workshop was lovely. It was so peaceful in this beautiful temple surrounded by amazing scenery. There were about 60 of so people there, all ages, races and backgrounds and it was so quiet. There was something really calming about it, being surrounded by this huge group of people who want to learn to meditate for what ever reason they may have for exploring it. I’ll try and go again at some point. You won’t catch me in orange robes though – red heads don’t do orange 😉

I take that back, some red heads can!

Yes not that catchy really, can’t see that taking off!

It was hard going trip. On the positive on the way out the plane had hardly any people on it so we were spoilt by the cabin crew. On the negative I got a migraine. On the positive we got through security and out of the airport in record time. On the negative the hotel we had only chosen because it had a bar and a pool – well both were closed. On the positive there was a health food shop opposite with a bar in it – only in America!

The clinic seemed to think I was doing well (hard to comprehend when you’ve been in bed/on sofa for six months, just had a migraine and had been in a wheelchair the day before) so they are reducing my protocol and hopefully my own immune system will kick in and take up the slack. They seemed pretty positive so I guess I have to go along with their plan and trust in their wealth of experience. My GP and I both think I’m deteriorating (I am – that’s a fact) and that my body is not coping with the drugs so he wanted less drugs to be taken too. So on the one hand I’m reducing drugs because I’m getting better versus the other hand where I’m reducing the drugs as I’m getting worse and need a break if that makes sense? I really hope that the clinic is right and prove my GP and I wrong.

I have been told to be more glass half full about this but anyone who has followed my blog for any length of time will know I’ve been at this kind of point hundreds (mini exaggeration) of times before and each time I get let down it’s taking me longer and longer to pick myself up again. I certainly need more brains (what’s left of mine needs an upgrade!), more courage to continue on with this never ending battle, more heart to stop the jealousy and ‘why me?’ that I just can’t shake off and that my doctor isn’t just a ventriloquist – it’s ok he never brings in a puppet!

I started the new reduced protocol (looks like it – practically needed a suitcase to take away my drugs from the pharmacy!) yesterday so please God let them be right – I really badly want to believe them.

So at the end of the consultation I wish I could have just tapped my heals together and been in my own bed. There is no place like home, there is no place like home – especially when you feel rubbish 🙂

This is a lovely poem by Australian Lyme Patient Karen Smith. I came across it (I think I was Googling ‘Can Coconut Oil Cure Lyme?’ or something else equally as daft) and felt I should share it to help spread awareness. This lady has done just that for people in Australia where the diagnosis and treatment of Lyme is even more of a battle than it is in the UK. It is very simple but brought a tear to my eye:

Invisible

Invisible is really not all it’s cracked up to be

It is dark and painful, lonely and bleak

It is the realisation that you must constantly fight

If there is any chance to be reunited with the light

Invisible is the desire

To live without pain and to return to a normal life

To be able to work, drive, listen to music or dance

Where the simple act of catching up with friends

Doesn’t come with the ‘pay back’ of a few days in bed

It is the dreams to participate once again in life, to live to the fullest, not simply exist

Invisible is the longing

For the understanding of family and friends

To know that they truly remember who we were before illness

That they believe that we are doing our very best to return to that life

To know that we are still loved and respected for the people we have always been

And not judged by the illness that has consumed our body

Invisible is the despair

That one day you will not keep finding a reason, or the strength to continue on

It is the midnight tears and the questioning of ‘who am I now?’

It is wondering will this pain ever end, will these voices ever cease

And will I ever find ‘ME’ again

Invisible is the cloak we wear

The smile on our face and our light hearted jokes

Are veils and armour that hide the pain and heartache

Look into our eyes and you will see

Invisible is a place you don’t ever want to be

Help us bring invisible into the light

So that no others have to suffer and fight

Tell our stories, believe our plight

Stand up with us and say, enough of the suffering this just isn’t right

Being chronically ill with an illness that nobody seems to have a clue about is awful. Being treated like a guinea pig, taking tablets that make you sicker and sicker each time. This treatment being your ONLY chance to have any type of life and that’s only if it even works is pretty stressful. Then you have to make the crucial decision each day. Bed or sofa? Bed or sofa? Bed of sofa? They advise you to avoid stress too – how crazy!

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 🙂

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 🙂

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

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 🙂

…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!)