More details will follow – this is more of a ‘save the date’ if you will.

The general idea:

11^th-17^th May is ME/CFS Awareness Week, anytime that week we would love you to:

• Get together with a group of people (friends, family, colleagues – up to you)
• Set aside a drink in recognition of people with ME/CFS, who would love to join in on social activities etc. but are unable due to illness
• Donate the cost of a drink to the ME/CFS association (or your local ME/CFS group) – details to come
• Let us know how you go, even include photos if you feel like it!

Any ideas or feedback would be appreciated!

Some info about ME/CFS http://www.mecfs.org.au/?q=node/7

“Sometime, somewhere you need to take something to be the truth. But if you cling to it too strongly, then even when the truth comes in person and knocks on your door, you will not open it.”

BUDDHA

Well, here I am again… up against the ‘oh so familiar’ brick wall!  It’s been a hard month, and I find myself unable to paddle against the current at the moment.  I have been here many times, and I keep telling myself I will move past it, however when I’m here I can never believe it will end… I guess I have to try and practice some faith.

Although my specialist has treatment options for me to try, they are so expensive which presents another problem.  I should say bigger problem as this problem already existed.  And how do you decide between making yourself more broke (if that’s possible) and choosing not to persue treatments.  I am also not looking forward to the fun little game I call “test the medication” as so many react badly with me, with what he’s suggested at least one or two will likely be a problem.

On top of this and other things, I missed a really important wedding on the weekend, and I am absolutely devastated!  My hubby’s brother (L) and his (now) wife (A) were being married and hubby was the best man.  Not only did I miss a family wedding I really wanted to share with them, but I also missed my husband standing up with his brother, reading a message from L to A, and doing a speech.  I wanted to share in his pride, and show my pride for him.

Aside from that, I feel a great sense of loss in not getting to meet A’s family and be part of that ritual of families merging.  They don’t even know I exist!

Sometimes it just really sux!

I have to admit that by the end of all of that, I don’t really understand everything he said, so you will have to bear with me…  The awesome thing is that he gave me a report with all the test results, findings and conclusions with a basic summary of what it meant.

I’m going to have to post everything in lots, as it is too much for me in one go, so the first one is oxygen therapy – as I have just had it set up for me.  I have to be honest and say I can’t remember why I am doing this, apart from that it is supposed to help with the chemical and environmental sensitivities, and increase the amount of oxygen in my blood.  Someone came and set up an oxygen concentrator at home, and I am to start with 5 min four times a day and build up to an hour four times a day… It feels really wierd, but let’s see what happens…

It is one of those things I mostly manage to let go through to the keeper when coming from someone I don’t know, although I have not experienced it in quite the accusitory way Rachel experienced.  However it really upsets me coming from family and friends.

I have tried many responses such as “Yeah, I know I do – but it’s not how I feel” or “Really?  cos I don’t feel good at all”, yet the same people keep saying it.  I know it’s a well intentioned way of showing an interest in my health, but it almost comes across as minimising the pain and crappiness I am feeling.

Is it one of those things I have to just let go?  Or do I actually sit down and have a conversation with the repeat offenders? :-p

I don’t want to make someone feel awkward when they are trying to be supportive, so it’s a hard one for me to judge.

Not sure which to talk about first, so I’ll just say what they are.

I have been really enjoying the group on second life.   I have to admit, I really didn’t think it would work for me, as I tried it a year ago and gave up because I couldn’t work out how to move around let alone find anything interesting on there.  That’s the brilliant thing about having a supportive group… not only do they help with the technical aspect of the program, but I really look forward to catching up with people from the group now.  For anyone who’s interested, there’s heaps of information about it at the ME/CFS Centre website.  Anyone with ME/CFS, family and friends are welcome.

Also very exciting, is that I have opened up a shop on madeit.  It is called Joyful Creations, as it is the thing in my life which brings the most joy to me at  the moment.  I”m not trying to make money with it – I’m certainly not fast enough to make an income… just put things there to help recoup costs, and share what I have made.  It is a fantastic hobby, but not cheap!  If you are interested you can check out my store and see what I have been making.

I have been taking heaps of tests for my specialist.  I really hope it proves useful as they are expensive and so tiring!  Sometimes I feel like a lab rat :-p  So far a few food intolerances are the main thing we have found.

I have begun to really enjoy twitter, especially as I have found some really nice people to interact with.   Although I am not on there often enough to engage a lot, it is really nice to have conversation with people who are so friendly.

That’s enough for me… Hopefully I’ll be back sooner than last time!

When I have the energy and concentration, I love to read other people’s blogs, and I like the idea of connecting with other people who have similar interests or are going through the same issues as me.  This is why I am trying Twitter and have joined an experimental group in Second Life (although I have no idea how to use it and have only managed to join the group once so far)

I am also enjoying learning how to do beading and wirework, and have found so many interesting and very helpful blogs to read – and would love to connect with the people creating them.  I just find it so hard.  For some people, like Mick, connecting with people online is so easy, and writing blogs and sharing his thoughts with others comes naturally.

Face to face I can connect without much hassle, however every time I go to write something, or post it on Twitter I find myself double guessing and asking myself – Why would someone else want to read this?  I feel as though I am in a foreign world.  You would think it would be easier with a husband who works with social media!

I guess since  being this unwell and not being able to connect with people face to face I am challenged to find a new way of interacting and am moved outside of my comfort zone.  I will take this as an opportunity to reflect on my experiences and thoughts, and if I happen to find people I can connect with that is a bonus!

If anyone has any suggestions on how to make the process easier, please let me know!

Have a read of “A life turned upside-down” from Independent ie. if you have time.

This happened as Mick was saying goodbye on his way to work.  The pain was so intense that I was gagging and couldn’t move.  All day was excruciating, despite taking Nurofen+ but the most difficult part was not being able to move.  I had a respite worker come around for 2 hours which was helpful and she helped me to the bathroom and back, and into bed again.

This is not a one-off.  Every time I come close to chemicals – cleaning products, fragrances, cigarette smoke etc I loose all ability to move my muscles, get a terrible headache and nausea etc.  Not to mention the times when I have done too much and ‘crash’ (too much can be talking on the phone for 30min or standing in the kitchen for more than 5min.)

It is a lesson in humility.  For someone who is used to being independent, it is quite an experience to be so dis-abled that you need someones help to use the bathroom.  Showering and dressing etc. is one thing, but there is a different element of helplessness when it goes that far.  It is a feeling you can’t imagine unless being in the position yourself.

Millions of people experience this every day of their lives, and for those of us who have an “invisible illness” it can be made harder by the fact that people don’t even acknowledge that we are unwell.  Mick’s parents will never know the impact that their visit had on me (which is fine by the way because I am still too embarrassed to discuss it that openly with them).

We never know what someone else is experiencing, which makes it so important to be compassionate regardless of what we think we see!!!

So I look for the little things which give my life meaning.  One of my cats jumping onto the bed, curling up next to me and purring away.  My dog running around like crazy chasing flies   Hugs from Mick, phone calls from friends, visits from family and friends.  I try and focus on the people who still stay in contact instead of the many who have disappeared since being unwell.  There are many things, but it is sometimes hard to remember amongst all the difficult stuff.