Sneeze and Snap

Good Morning Bleeps.

So I have been attacked this week - by a sneeze. Yes you read that correctly, a bloody sneeze has knocked me on my arse.

Friday morning I was getting ready to climb out of bed as I had a business meeting with potential new clients. I was taking stock of what was happening in my body and apart from my heavy, lead legs I was feeling like it was going to be an OK day. Well, apart from the fact that I had to cancel my Body Balance class because of the meeting, I do hate when business gets in the way of my Yoga classes!

I was literally lifting my head off the pillow to get up when AAAACHOOO and "snap". As my head flew forward with the sneeze, something pinged in my neck or back. I can't be certain where exactly but what I did know is that I couldn't move. I couldn't turn my head, move my neck or even get out of bed. OMG!

I have somehow managed to trap a nerve or pull a muscle somewhere in my neck and or between my shoulder blade and I am now on day six of torture. For those of you that may be familiar with the TV show Red Dwarf, my children have nicknamed me Kryton as I am moving like a robot.

Ironically, the new clients that decided to go ahead with a new website (of course, I am brilliant ha ha) are cameramen and one of them worked on the recent series of Red Dwarf! The Universe has a sick sense of humour sometimes.

I have tried to get relief from heat pads, pain killers and heat rubs but nothing has really worked. I have kept going to yoga as I was to keep moving and stretching, my guess is that if I am inactive then I may cease up entirely. I am not sure if it has helped but it certainly hasn't hurt and I love it so it would take a lot for me to stop going.

My yoga instructor showed me a lovely stretch that does seem to help a little. I have a bit more movement in my head today (four days on) so I am hopeful that it won't drag on for too long.

I do know that I will not be doing any headstands for a while.

So enough about me, how are YOU?

The Return of the List

Good Morning Bleeps.

I was thinking yesterday how we forget things. Not just those of us that have cognitive issues and therefore the memory of Dori ( from the Disney movie Finding Nemo) but as Human Beings in general. What do I mean by that? Well, if it wasn't for the ability to forget then I think the world would probably be full of "only children". Let's face it, labour bloody hurts and childbirth isn't something to be taken lightly but yet a lot of us go for a second (or in my case and third and fourth) child.

I remember when I was having my second daughter, Kassidy (now a beautiful 18 year old), my waters broke in the middle of the night and I excitedly toddled off to the hospital. As soon as my first contraction hit it all came flooding back to me and I remember thinking "oh crap, I remember how much this hurts now." Thankfully it was a relatively easy delivery (drug free) and I cherish the memory of that day.

When everything settles down and you get on with your life then the really tough stuff sort of fades into the recesses of your mind. You stop focusing on them because, quite frankly, you don't have to any more. For example, at the moment I am sitting here writing with a tightness around my throat. It feels like a pressure around my windpipe. I used to hate this symptom because it makes me feel like I am being strangled and it panics me slightly. It is usually accompanied with the inability to get enough air into my lungs and as hard as I try, I feel like I can't breathe. It feels like a tight band around my middle.

It occurred to me yesterday that I had forgotten a lot of what happened to me when my symptoms were rampant during the first third of this year. The one thing that has come back to me, that I hadn't even realised had gone, is my list.

I call it my stock list. I wake up and immediately take stock of what is happening in my body. For the first time in MONTHS yesterday I got the electric shock type zingers as I got out of bed and so today I gingerly lowered my feet to the floor and stood up slowly. I used to do this every morning but I had stopped (as the zingers had gone away). Sure enough, the old electric zaps travelled up through the soles of my feet into my legs. I then got my old list out (in my head), blew off the dust and went down it. Hello old friend, it's been a while.

Zingers in my feet. Check.
Arms and fingers tingling. Check.
Legs heavy like full of wet sand. Check.
Left side of my face numb but tingly at the same time. Check.
Pressure in my head. Check.
Blood feels like ice water. Check.
Disoriented / dizzy. Check.

What really stinks is that my real life "to do" list is getting longer and longer as I don't have the energy or focus at the moment that I should have. I am determined to focus today and get a lot of work done. I won't give in to this illness, not today, not ever. I am hoping to put that symptom check list back in its box very, very soon.

So enough about me, how are YOU?

Don't Let It Get You Down Dog

Good Morning Bleeps.

I am still experiencing a symptom flare / relapse and so I decided to bite the bullet and call my Neurologist's secretary and ask for an appointment. For those of you that don't know, the last time I saw him was on April 12, 2012. He ordered more blood work, MRI's (both brain and spine, with and without contrast) plus a CT scan of my chest.

I have been waiting (probably stupidly and overly patient) for a follow up appointment. I didn't push for it because a) I am too passive and b) my symptoms had subsided and I was getting my life back. I was back at the gym, doubling up on classes and feeling quite well, not perfect but nowhere near how I was earlier in the year.

As I said in my last post, the ugly monster has reared it's head and my symptoms have all come back with a vengeance. I called the secretary and explained my situation. She told me that my Neurologist couldn't see me until NEXT YEAR. What??? Apparently he is the hospital attending for the next month and so he is only running one clinic a week. I asked if I could see another Neuro - answer? No.

I then asked if I went back to my GP and asked to be referred to a different Neuro would that work? She replied (quite rightly) that this would take longer. I asked her what the heck I was supposed to do? Apparently, there isn't much I can do. She said she would talk to him and see if she could "add me on" to one of his clinics and she would call me back. She didn't call me back. No big surprise there, it has happened before.

It isn't like I expect him to DO anything but the last time I saw him he said he couldn't give me an official diagnosis until I had experience two very separate "flares" of symptoms, which now has happened (along with my brain MRI that is abnormal).

I said to the secretary that friends tell me to call my MS nurse but of course I don't have one because (and she finished my sentence here) "I don't have an official diagnosis yet". You don't get an MS nurse for "probable MS".  I have had people tell me to call the MS Society or other places but it is hard to explain how I feel about this.

I have the abnormal brain scan, I have the symptoms, I have the body that if it gets hot starts twitching (visibly) but without that rubber stamp of a diagnosis I feel like a fraud, a fake, a hypo. For any of you that were maybe left in limbo, you may understand this feeling. I don't feel like I have the right to call these places.

I did go to the gym on Sunday to do a Yoga class. I was in down dog position and my right hand was spasming uncontrollably. I was looking at it shaking and willing it to stop, which of course it wouldn't. I was upside down, choking on tears of frustration that I have no control over my body.

In the real world you have control dont you?

If you get fat you can control what you eat, up your exercise and lose weight. If you are tired because you stay up all night watching movies then you can choose to go to bed earlier and get more sleep. If you have a headache you can take a pill and it goes away. With a chronic illness you are not in control of your own body and it is frustrating and so hard to explain to people who are well.

Speaking of people who are well, I posted something about how I was feeling on Facebook recently and there were some family members and so-called friends who didn't even respond. I commented to a friend who has MS how hurtful it is and he quite rightly stated that when you get a chronic illness your world tends to shrink. I have found this to be a sad and true reality.

On a brighter note, I managed Yoga on Sunday and yesterday I went to "Body Balance", which combines Pilates and Yoga and I did very well in that class. I have had to stop step classes (I would fall on my arse if I tried that one) and there will be no wiggling in Zumba  probably for a while but I will keep going as much as I can with the classes I can manage. They make me feel positive and I need that right now, more than ever.

I did explain to my Step instructor that I won't be in her class for a while as I am having a relapse to which she replied "but you were fine last week". I patiently explained that yes, I was fine last week but sadly this is the nature of the beast. One minute you are living your life and then the next you can be knocked sideways.

So enough about me, how are YOU?

Snot Bubbles & Yoga

Good Morning Bleeps.

It's been a while. I guess the truth is that I have been feeling quite well and so I was just getting on with my life.

I went to see my kidney specialist who informed me that although my kidney is tiny, it works and so it will be staying put for now. I guess it is good news (who needs another scar, right?) but in a way if I am honest I was disappointed. Why? Well I did some research about symptoms that can be caused by a badly functioning kidney and the list was long and included a LOT of my symptoms. I started to fantasize that if they took it out then it would take away all of these symptoms too. Wouldn't that be awesome?

I asked my Doc if it was working then why was I getting constant pain in the area. He said that my brain in likely sending messed up pain signals via my damaged nerves to that area. Brilliant - not!

Anyway, the last few months I have felt quite well. I have gone back to the gym, taking a variety of classes. I started out with Body Balance, which combines yoga and pilates (with some Tai Chi thrown in) and I LOVE it. I slowly added other classes such as Zumba and more recently Step.

As I have become stronger and fitter I have started to double up on my classes. Step for an hour followed by Body Balance. I was slowly turning back into a gym bunny, a throw back to my old life. Loving it and loving seeing the changes in my body - who knew I could change the shape of my bum in my 40s?

The thing about having a chronic illness however is that really, we can get lulled into a false sense of security because I have been knocked on my arse the last three days. I feel like I have gone into a time machine, back to the girl of a few months ago who sat every day, blogging while crying and blowing snot bubbles.

I have had to cancel my classes today because I cant get off the sofa without feeling like I am going to fall over. I am SO pissed at my body for betraying me. I am SO pissed that I have no control over this bloody thing. I am SO pissed that I dont have a Doctor I can turn to. I am SO pissed that my diagnosis is "probable MS". WTF does that even mean?

In the summer when I got hot my left leg started twitched (visibly) uncontrollably. More recently when I tried out the sauna at the gym my left leg started to spasm once again and I felt awful so had to leave. I can't have a hot bath without feeling like crap. I KNOW in my heart this is MS but I have no medical support. I am told by friends to change GPs but I am out of energy.

The last time I saw my Neuro was in April. I had more MRIs, blood tests etc in May/June and yet here we are in November and I am yet to get a follow up appointment. I suppose I should call, fight, follow up but I am all out of fight. I just want my life back.

For the first time in a year I got my studio lights back out. I was feeling good so thought it was time to get back in the saddle and revive my once thriving photography business. I stopped shooting because I was unable to commit to these very physical sessions, not to mention how hot I get under the lights. Now what? Is this some kind of cosmic sick joke? Is the Universe saying "oh she thinks she has her life back. Look at her, going to the gym and feeling good. Now she is getting her equipment out, let's show her who is really in control".

Seriously, I WANT OFF THIS RIDE!!!!!

So enough about me, how are YOU?