Honeymoon, Venice - Lots of photos

Well Hello People…

I’m back from my honeymoon. Here you can see some of my photos. All in all it was a great success. My energy was better than it has been in a couple of years on holidays. What I really noticed is that I’m not struggling as much getting from A to B. I’m still getting post exertional Malaise, but I’m not struggling as much when walking. From day one when I got sick I have yawned excessively when walking(lack of oxygen I guess, as little bugs steal oxygen). This has improved significantly since my last IV treatment. And lucky me, as there is no point in going to Venice if you can’t do some walking. That much I learnt. I certainly would not advise Venice really for someone with severe fatigue. It would have been a nightmare for me last year.

I obviously had to spend a lot of time resting in between doing things, but I’ll take that as it is a hell of a lot better than last year where I had to get driven the five minutes to the beach and use wheelchairs, etc in the airport. These are all small signs, but very welcome indeed. For example in Venice I was loving taking photos and looking around. Previous to this all my concentration and energy went into getting from A to B, in pure survival mode. No luxury for thinking of extra things. Also, in the airports I was happy to walk to gates, and actually quite enjoyed the airport experiences unlike how daunting they have been in previous years, all small but good signs. Oh yeah… and flying with a lot less pain was HEAVEN!!!! Last year for the whole flight home I was in terrible pain. It was horrible.

Mind was called in to lead matter on many a time, so yes work is always involved. I got six bites over the first couple of days. If you are thinking of going to Venice, make sure to bring insect repellent. Another issue with Venice/Italy, and staying in a hotel in general is that it is very hard to stick to ones sugar and yeast free diet. In saying that we had so many lovely meals. Yum yum… take that little buggers, I was on my honeymoon.

By the end of the first week I started to get a bad infection in my mouth. This has progressed over the weeks to many painful and swollen glands around my face/neck/head, although I’m hoping it is improving slowly now that I am back and resting properly. I was just on the oils for the last five weeks following my IV. I had asked my doc if I could just do oils for honeymoon month as antibiotic treatment makes me so ill. I can certainly feel that my body isn’t winning the battle yet. Those God damn buggers come back fighting each time. However, I’m happy to give my body a small break from those yucky antibiotics. They are another problem in themselves; the usual catch 22 that comes with this illness.

After a week in Venice we went to Spain to a family apartment for two weeks. The self-catering was much more suitable for my diet. It was all good, good, good!

The weather is amazing here in Ireland!!! This has helped with coming back to ‘reality’. I’m pretty uncomfortable at the moment with these painful glands. I’m hoping they will improve soon. I have a wedding this weekend and I’m hoping I don’t have a football face sitting on top of my nice dress.

                                      

Over and out for now.

I hope you are all doing ok…

Treya : )

Honeymoon

Hey People,

I haven't been feeling up for blogging for the last couple of weeks, plus I've had to prioritize. Top on the list was getting as much rest as I could before my honeymoon. I'm heading off for three weeks tomorrow, so I probably won't get a chance to write any posts, but you never know.

We are heading to Venice for a week, and then on to Spain for two weeks. I know... Lucky us!

Anyway, I hope you are all doing ok...

I shall speak to you on my return hopefully.

Treya : )

Lets talk about......The same thing : )

Hey People,

I'm still harping on about the same issue. That is because I still don't seem to be able to have found a happy medium. The walking/deconditioning issue that is. I want to rewind back a bit. A while back I was feeling pretty good energy wise. Then over the last few weeks I had treatments and flare ups which seemed to have stolen some of that luxurious energy. So I retreated to the safety of the only place where I can truly stop pushing, which is my bed. I don't sleep there at all during the day, but I usually watch shows or read. I also suffer with extreme cold, and my bed has an electric blanket, and a few duvet covers. I also need to use a hot water bottle. As I said, it is one of the only places where I am relatively comfortable.

So things started to stagnate as they do in that strange cyclic pattern that I live. Last week I found myself having a conversation with someone, and I was mentioning that things had started to slip, and most of my time at home is spent resting in bed. I explained that I seemed to have lost my get up and go... After I relayed all of this I felt quite unsettled for a few hours. Why? My inner critic. My harshest critic. This was the trigger that made me want to give myself a kick in the ass. Perhaps I was right to try and kick myself into action. Perhaps all those years of being judged(or feeling judged) crept in and made me feel uncomfortable, as if I was lazy?

This is just a perfect example of how I am still quite sensitive to how I am perceived with this illness. But at the same time I wonder is it healthy for me to have a certain amount of that? as it leads me to ask those all important questions about deconditioning. I don't know... All I know is my body is feeling some post exertional fatigue... I think my mind tricked my body a bit? Perhaps I need to just walk every second day? Perhaps it is just the treatment? What are you trying to tell me body??? I'm getting confused from all of this.

This all highlights the stop start, too much, too little, psychological battle one experiences when living with such an illness. Today is a fresh day, and I am not going for a walk. I need to rest. Tomorrow is another day, and we shall see. I shall continue to try and find this balance. I shall also continue to try and feed that dear soul of mine.

I am constantly fine tuning............ : )

I hope you are all ok today...

Treya : )

The other side of the scales

Hey People,

I'm not great today, but I wanted to briefly talk about something. Last week I wrote about giving myself a bit of a shake up, and getting myself moving a bit. I would like to make it clear that I am very aware that this is not something I or we have the choice to do most of the time. I would hate for a non-sufferer to read my post and think that having to lie around resting is a matter of motivation. It's not! Maybe that kick up the ass is simply a test for oneself...

It is back to the whole paradox scenario again: We need to listen to our bodies and not push, yet we also have to make sure that we aren't becoming deconditioned. Of course I know all too well what exertion can do to someone with chronic fatigue. But I am also aware what deconditioning can do to the body and mind. I think it is important for me to ask myself if I am becoming too used to lying around. Even if the answer is no, I still think it's good to ask.

Perhaps the constant resting is just as bad for my body as what some exercise is? If lying around directly influences deconditiong of the body physiologically, then is this equally as bad? In relation to myself and the level of debility I am at now, I think it is important to push myself to do little walks as often as I can. Then I can rest after that. This seems like a healthy balance to me. For some this might not be an option(It wasn't for me last year). For some, activity might be something smaller within the home.

All in all I think it is important to keep the deconditioning issue at the forefront of our minds as much as we can, remembering that lying around is bad for the body physiologically too (just research it and see). Of course it is very different for those who are bedbound and hardly able to move. I am talking about someone like me who has always been able for some form of activity.

I can only speak for myself. Others will have to find their own balancing act. I have been keeping up the walking. But I have also been having to rest up in bed. Some days I haven't been well enough to walk, but I'm making sure that each day I analyse it freshly, so as to make sure there is no habits forming.

Over and out for now.

I hope you are all ok today...

Treya : )

Tick Talk Ireland Comment: Testing

Hey People,

This is the comment that Tick Talk Ireland left under the post about testing. It explains a bit more. I thought most people probably don't read old comments, so best to post it.

"Hi there, have had some fantastic news. BCA/Infectolabs are offering 55% off their LTT tests & CD57 tests & 33% of all other tests. This is a special price especially for the conference. LTT tests are useful for showing 'current active' infection whereas as antibody tests may show past infections also. They specialist in Lyme & co-infection testing. I may also be able to offer free courier to Germany via fedex if we can share the same shipment. If anyone would like to see a price list feel free to hollah using our contact page at: http://ticktalkireland.org/contact.php. Will need to know ahead of time so we can order the test kits before the event.

Also a kind soul has offered to do T'ai Chi lessons on the evening of the conference, more details hopefully to follow.

With best wishes,

Tick Talk Ireland (registered charity 19588)"

I hope you are all ok...

Treya : )

A Recipe for the Soul

Hey People,

Action has had to be taken! My soul was deprived after the last couple of weeks of having to lie around like a blob, merely existing. I've decided to fight those little buggers, and reclaim it back. This has been achieved by simply feeding this little soul of mine. And the recipe for doing such is as follows:

Step 1. A good kick in the ass

Step 2. Resist the calling of the bed.

Step 3. A sunny day

Step 4. A walk. For which you will need the following:

• Uplifting views of nature
• A music playlist of your favorite songs
• Warm clothing
• A keen awareness

Step 5. A pat on the back!

Yes, it may sound simple. But it is effective.

I have given in over the last two weeks to what my body was crying out for, which was nothing. This kind of nothingness just seems to slowly and slyly suck the life and spirit out of me. I just couldn't handle any more of it. The doer in me seems to become more and more uneasy with the lack of stimulation. I have had to re-asses the situation I was slipping into, and come to the conclusion that I need to re-visit the all too familiar 'quest to find balance'

Yes, I know... I know... I need to listen to my body and rest up. But this perhaps is not so good for my poor wee soul which fades with such stagnancy. I lost the battle over the last couple of weeks, and it bugged the hell out of me. Being on treatment for three weeks all the time with little breaks in between means that the treatment slowly but surely wears me down. This is the consistency problem that I talk about. Just when I get myself out of that deep dark hole, and I'm lying there with the sun beating down on my face, drawing a big smile, and exhaling with relief, I then get thrown back down the hole again, to start the whole damn process over again. It seems an impossibility to me to remain on a level with such inconsistency.

So it is normal for me to go through these periods when I'm just too worn out to have that luxury of motivation. I had my weekly acupuncture yesterday, and I told her about my weekend depression and that I felt it was some how related to my stomach as it started after I had to take my high dose of oral antibiotics that I take for three days between my IV's. She says that antibiotics really dry out the stomach, and this can result in a ying deficiency which can cause a kind of depressive emptiness feeling in the stomach, and one can feel very unfocused, aimless(which is exactly how I would explain it) and restless.

We continued on with what we have been doing with every week with the acupuncture and she focused on extra points in the stomach. I can't say for sure if it worked or if I've just had enough of my maony, depressing head, but today I have felt more upbeat, and determined to pick myself up. And I started with the above recipe.

I have to say, I had a truly amazing walk. I am SO lucky where I live by the sea. Everything just seemed so alive and vibrant to me. There was the glistening water blanketed under the shining sun, a dappled sky of fluffy clouds which artfully shadowed parts of the sea. And that sea. It was such a magnificent mixture of greens and blues. The beauty didn't stop there. The sand seemed to swirl in such artistic shapes. The jagged rocks below the path I walked on were painted beautifully with green and yellow mosses. Having the sun hit my face, and my favorite music flowing through my ears, each and every sense of mine was alight!

I will continue to feed my soul this vital recipe for the duration of my treatment. It's what I need. It's what my dear soul needs!! And I shall gladly keep feeding it until it becomes obese : )

That's all for now people.

I hope you are ok today...

Treya : )

Lyme Tests available at Irish Lyme Conference

Hey People,

I have read on the Tick Talk Ireland Facebook page that " BCA/Infectolabs will be offering a

third off their blood tests to those coming to the conferene in June". It is a German Lyme testing lab.

There will be arrangements made for all the bloods to be picked up by Fedex from the hotel holding the conference.

To find out more go to their Facebook Page. HERE Scroll down and you will find it. It was written last Sunday.

I hope you are all ok...

Treya : )

An annoying pattern

Hey People,

Over the last day or so I have seen myself once more leave behind that dark shadow which sometimes reveals itself. When I look back over that last post it kind of irritates and disappoints me that I still go through these periods, and that the content of the post is probably not particularly uplifting to read. It seems to be a pattern of sorts. However, in saying that, when I decided to write this blog I promised that I wanted to tell this life exactly as it is. That includes its highs and its lows, for which there are both equally, usually to two very different extremes. And it includes and annoying and relentless pattern!

When you are unwell there is always a pressure to give off an optimistic and positive vibe. And I get this. It’s draining all around otherwise. It’s just that I personally don’t think communicating this only to others is being honest. It does nobody a favour by portraying a false picture, especially to others in the same boat who may beat them selves up over not being as positive. I see this a lot when I watch others write about their lives. There always seems to be a forced emphasis on being positive, and fighting.

As I said there is an equal amount of good times, made even better by the fact that one experiences such desperate times. It is an extreme way to live, and I intend on continuing to write about it with honesty, ignoring my harshest critic: myself.

The truth is, in spite of all these dips I take I do truly believe I am a naturally positive person. It’s just this damn illness sucks the positivity out of me every time I manage to build it up.

Perhaps I will be carried with lightness all the way up to my next holiday in three weeks. Hmmm…. What do you think the chances of that are given I have another two weeks of heavy IV treatment left…….. : )

I shall wrap my heart in hope for now, and see if I can keep it safe until then.

I hope you are all ok...

Treya : )

Hurry up and open gates

Dearest People,

What a strangely bipolar existence I seem to live... It’s like a months worth of emotions and experiences all packed into one week; a weeks worth in one day. Oh my poor little brain doesn’t know whether it is coming or it’s going. And I all the while, I hold on tight and try to consider it all.

I don’t want to go out, yet I am desperately jealous presently as I look out my bedroom window at the sunny evening, knowing that many people are in celebratory mode for the holiday weekend, my husband included, after I encouraged him to do such. My body is leading my mind, and my mind is following, but not without resistance, born out of reflection on all things past.

I guess I’m having one of my ‘sudden moments of reality’: This can’t be my life now. Is this really me? The one who had so much going for her… Who had so much love and passion for all in life… This is not the way it was supposed to happen. This moment has been dipped in chilling awareness.

Some consistency would be nice. Yum yum… Yes please. I’ll have lots of that! But something tells me it is going to be some time until I am indulged with such. Not right now whilst I am on IV treatment, that’s for sure. There’s a war being fought inside me, an important job being done. I hope.

This feeling will pass, and life will do its job and keep on keeping on... Fret not little Treya!

I’m feeling impatient. I’m like a racehorse constricted tightly behind that gate at the start of the race, so full of spirit, and ready to go.

Hurry up and open gates!

Treya : )

Introduce yourself

Hey People,

Many of you will have seen, and already written a little about yourself in my 'Say Hello' section on the right hand side of my blog. For any of my newer followers please feel free to share your story with everyone. It's good to hear others experiences.

If you have a blog, be sure to include a link.

Don't be shy now.......... : )

Treya : )