Stop! I Want To Get Off!!

Good Morning Bleeps.

I was really hoping to wake up and feel better this morning. Oh well, I guess more of the same today. My legs drive me NUTS when my symptoms flare. I wonder if any of my fellow Spoonies understand what I mean when I say they feel heavy, like they are full of lead. They ache just like when I was a kid and had those awful night-time growing pains but much more intense. To add insult to injury I feel like my skin in on fire, like sunburn while my blood is running cold like iced-water.

I am light-headed and feel odd in a way that is hard to explain. Almost like being a bit drunk or something, it is so hard to explain and even harder to not get down about. I can deal with the numb face, this has been my longest (and first that I noticed) symptom so it is just something that lives with me. It is the stuff that comes and goes that gets to me, I never know from day to day which physical oddity is going to test me.

I wish I knew what had caused my body to slip back into this symptomatic phase after it seemed I was getting "better". Am I EVER going to get better or is this it now? I sure was lulled into a false sense of security over the last couple of weeks of feeling good (and like my old self).

What did it? Was it the 5k run? Is it stress? Is it just how it is going to be forever and there is no rhyme or reason? I hope not because at least if there is a reason then I have a chance of being able to control it. See? There I go again, wanting to control this flipping mystery that has taken over my body.

On top of all that my kidney is hurting like a Mo-Fo today. Brilliant.

I have had a LOT of stress on a personal level dealing with children and ex's. There is other stuff going on that I can't really share that is weighing heavy on my mind too. I tend to dwell on stuff and get all stressed about things I can't change, I know this is having an effect on my daily symptoms but I can't control how I am. I wish I could just "switch off" sometimes and tell all these little voices in my head to shut the F up. Just to be clear, I don't have actual voices in my head, I am not crazy but you know what I mean (hopefully).

I know people say that you shouldn't get stressed because it makes symptoms worse but life doesn't work like that does it? Exercise is supposed to be great for reducing stress but I think running is definitely out of the question for me right now. I don't have time to get to the gym for yoga classes so I am a bit stuffed with that right now. I really want to lose about 5lbs but I'm not going to do that sitting on my arse watching the Jeremy Kyle show. My body however is calling the shots - totally bloody frustrating.

Oh well, I guess there are people worse off and getting down in the dumps isn't going to help is it? It is really hard not to though, just saying!

So enough about me, how are YOU?

Being Sick Sucks Balls

Good Morning Bleeps.

Well this stinks.

I have had a couple (maybe just over) of really good weeks. I wouldn't say symptom free but I would say pretty darn close. I was starting to think this invisible monster was getting bored living with me and all my moaning and had decided to leave home and me in peace.

On Friday I decided that I would go for a run. Yes, you read that right; a RUN! I did 5k in 33 minutes, which is slower than my pre "being taken over by this illness" time but not bad considering my running shoes haven't hit the ground in eight months.

I felt a bit tearful half way around my old circuit because I was struggling (which of course is to be expected) and it was a depressing reminder of my loss of fitness. I held it together and in the end I suppose I was quite pleased that I didn't give up and managed to complete the target that I set for myself.

Saturday I could hardly walk. Seriously, I was walking as though I had pooped my pants. NOT a good look at all. On top of that I had a yoga class booked. I wasn't sure if I should go or not, would it make my muscles worse or help to stretch them out? I decided to go for it and actually although it was a hard class it did loosen me a bit.

Sunday was nice and relaxing. We went for a lazy pub roast lunch (and a glass of wine) and just chilled.

Monday: BAM!

I woke up completely full of symptoms. Dizzy, numb, tingly, squiffy vision, tightness in my throat, foggy brain and just that horrible feeling of not being quite "present" in the room. Had I overdone it? Maybe my body was just rebelling as a reminder to take it easy.

Yesterday was pretty much the same and I am now on my third day of feeling awful again and I am so fed up with it. I really saw a light at the end of the tunnel over the last few weeks and now I feel like I have been propelled back to crappy land. I feel really fed up over it. I know stressing out makes symptoms worse but really if you can stay stress free through this crap then please let me know how because I feel like I am going bloody mad.

I have my MRI appointment for this weekend and although the Neurologist said he would do them with contrast, the appointment has come through without. I called his secretary and left messages but haven't been able to speak to her yet. What do I do? Stressed!

I returned the heart monitor to the cardiology department on Feb 22nd. I followed up on April 12th, asking them when I will get results because I sure as hell still have the chest pains. I was assured they would rush me an appointment. Rush??? It was already almost 2 months later. I just got my appointment for my follow up and it is August 20th. Almost SIX MONTHS after the last test. I get chest pains often so do I just ASSUME that no news is good news? I am sorry but with the way I have been treated by the NHS I don't have much faith. I am so fed up with it all.

I had my ultrasound a couple of weeks ago to try to get to the bottom of this pain and it was revealed that my right kidney has deteriorated even more. I should be going back to my GP to follow up and get referred but I don't have the energy or the fight in me right now. I am at the stage of 'what's the bloody point of keep fighting when nobody in the medical profession seems to care?' I have a CT scan coming up with contrast of my chest and have recently read that the contrast isnt good if you have kidney problems. Who knows if that's true? I feel so confused.

I get told to "keep positive" and boy am I am trying but it is so hard when people don't really understand (and I dont expect them to really) how I feel.

I haven't even had it in me to blog (as you may have noticed) because what is there to say? I am still none the wiser but it seemed like it was getting a bit better. Now that I am on my third crappy day and I feel like I am back on the hamster wheel - I just want off!

I want to be able to go for a run. I want to have energy. I want a face that doesn't feel numb and weird. I want to be able to work without getting electrical zaps shooting up my arm every time I move the mouse. I want bloody answers!!! Oh and I want to go to Tenerife!

So enough about me, how are YOU?

The Wedding

Good Morning Bleeps.

It's been a while - sorry about that. I needed to take a blog break for a while, sometimes focusing on my symptoms and the negative feelings about them can get a bit draining. I had to take a few days to just put everything to the back of my mind.

For the people that messaged me following my "breaking point" blog - thank you! I had a bit of a melt down last week but have picked myself back up again.

Last weekend was lovely, it was just what I needed after all of the stress of the previous week. Phil and I went up to London on Saturday to stay for two nights as we were attending our first Hindu wedding.

I had my two dresses picked out, my lovely pink one for day time and my silver sparkly one for the evening bash. That is the advantage of staying in the hotel where the wedding is being held, you have the luxury of being able to change if you want to.

We arrived at the hotel Saturday afternoon and spent a couple of hours in the spa area. We had a nice swim, sauna and soak in the jaccuzi. I couldn't stay in too long as the heat made me feel a bit squiffy but boy was it lovely to spend time just the two of us and relax.

After that we had a nice drink in the bar and then went for a walk along the Thames. The hotel was right oppositve St. Paul's Cathedral so the area was lovely to take a stroll and play tourist for a couple of hours. In the evening we ate dinner at Benihana, which was lovely. For those of you that may not be familiar with this restaurant, it is a Japanese menu and the food is cooked right at your table on a large hot plate. Usually you share your table with others but luckily for us it was quiet and so we had almost the whole place to ourselves.

We woke up early the next morning to room service breakfast and started to get ready for the wedding, which was starting early at 9am. I put on my pink dress, got my hair and makeup sorted and then went down to join the wedding. Now, I was aware that I had to tone things down with my outfit to be respectful of the Hindu faith and when I picked this dress out online I thought it would be perfect. Pretty, classy and not revealing. What I didn't consider was that the model on the website was very skinny and had modest boobs, you know, a model's figure.

Well, lets just say that I have some curves and so the dress looked quite different on me. When we got downstairs I was PAINFULLY self conscious of my cleavage. Such a faux pas at an Indian wedding. I was literally squirming in discomfort. I decided to go back up to the room and change into my "evening" dress because it is cut higher at the front and would completely cover the "girls". Anyone that I was introduced to in that first 20 minutes must have thought I was a whack job, one minute in pink and then next in silver. Oh well, I was a lot more comfortable. Next time I will be be more careful!

Nishan and Ushi - the beautiful bride and groom.

Our friends Tara and Andre arrived shortly thereafter as well as some of Phil's other work colleagues and the party got started. There were lots of parts of the actual ceremony where I was a bit lost but there was a scroll on each table describing each part of the service and explaining the traditions and the meanings behind it. The bride was stunning and Phil's friend Nishan (the groom) was very handsome. They made a beautiful couple.

We went up to the roof terrace - lovely view and totally naughty as it was out of bounds!

I did make one stupid comment when we were waiting at the bar. A large group of us were standing and moaning about the slow service. Someone commented that the one and only bartender had been working on the same cup of coffee for about ten minutes when I piped up "who orders coffee at a bar anyway?"

One of Phil's work ex-colleagues turned around (I just met this lady), raised her hand and said "me". Did you ever want the ground to open and swallow you whole? Yup, this was one of those moments. Of course everyone was laughing and I apologised after saying "awkward" and trying to make a joke of it but my subconscious was saying "nice one Kaz, once again your foot is inserted in your mouth".

The beautiful Tara and Andre 

The food was lovely (vegetarian during the day) and the evening party was a lot of fun with dancing and yes, you guessed it, more wine!

Monday we woke up with a hangover and made our way home as we had to work. Tuesday was a bad day symptoms wise. I felt like hell all day. My body was rebelling for partying too hard but it was OK. I have had more good days than bad lately and I am so grateful for that. Dare I say I feel almost like my old self. I have the usual numb face, tingles and electrical zaps but nothing that really makes me feel ill or down. I am almost nervous to say this out loud in case the Universe hears me. I don't want to tempt fate.

Phil and I - at the evening party - a bit tipsy to say the least ;) 

I still sit here in limbo land with more tests to come but I think in some way I have made my peace with it. I am a control freak by nature but I think sometimes you have to just let it go and let whatever is going to happen just happen. I find when I get stressed my symptoms get worse and so I am trying to stay as calm and positive as possible.

So enough about me, how are YOU?