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?

Normal is NOT always a good thing!

Good Morning Bleeps.

Well, yesterday sucked. I went to the Doctors about this UTI and the first question he asked me was did I have a urine sample. Yeah, I always carry pee around with me (roll eyes here). I told him that no, I didn't but I do know my body and I knew I had a UTI and needed antibiotics. I guess he had to make sure so off I went with a little bottle to get him the sample as requested.

While I was gone I guess he looked at my notes and when I came back in he told me that my kidney scan came back normal. WTF?!

The urologist told me that if I had a normal result then he would just write to me and would only send an appointment if it was NOT normal. Since I had the appointment come through I assumed that they found something had changed since the last time I had it done. I had hoped that maybe they would offer some treatment and that might lead to some of my symptoms being alleviated. How the hell can it be "normal" anyway when it wasn't normal 14 years ago? It isn't like kidneys just magically fix themselves, can they?

I started to cry and the Doctor looked surprised, he said to me that it was "good news" and I guess it is but I explained to him that it has been a year since I had a melt down in his office (not to mention the years I was fobbed off before that melt down as an "anxiety" case) and begged for help and that a year on all I know is that I have an abnormal brain MRI and a shit-load of symptoms. I told him my life is on hold, my business is going down the toilet and that I am so sick of feeling so unwell every day. He looked at me like I was a drama queen (it feels like a lot of people look at me like that lately) and sent me off with a prescription for the UTI (the sample proved that yes, I do in fact know my body and when I have an infection, go figure eh?!)

So I came home thinking sod it, what is even the point of going to the Urologist next month? For ANOTHER Doc to give me a great big dose of sweet FA? Then I wondered, maybe my Doc read the letter from the cardiologist and not the urologist? What if he got it wrong? Who knows? My experiences over the last year have led me to trust nobody in the medical field.

When I go to the Urologist next month, if he says it is a normal result I am going to give him a piece of what little sane mind I have left. I will remind him that he said he would inform me by letter of a normal result and that I have had my hopes up of getting some actual news when getting the appointment instead.

So I am back on another course of antibiotics, I am in pain (kept me awake all night), I am fed up and stressed out but I am so trying to keep on smiling. I have two friends in hospital right now and so my heart goes out to them and I hope the steroids kick in fast and they are both home quickly, MS is a bastard of a disease.

Thank you for all of the lovely messages I got from my blog yesterday, it means a lot to me to know how much people care.

So today I will pop matchsticks in my eyeballs to keep them open (no sleep does not make for a happy Karen), I will put on Nickelback at full blast (not long until the concert, woohoo) and I will work on my new business idea. I might even get started on my book.

So enough about me, how are YOU?

It's been a while ....

Good morning Bleeps.

It's been a while eh? I have taken a step back from my blog because I felt like I was going around in circles. It still does in some ways because I am none the wiser and no better off but today I decided to talk it out as I really need to offload. I have this need to write down how I feel but that is confused with a feeling of wanting to retreat into myself and hide away from people and the world, it is a weird old conundrum.

Well, the last time we spoke I think I had been to the Urologist and he was going to run a test where they would check my kidney function. I had that done in July (with the dye running through my kidneys to track how they work after filling me with water and then a diuretic) and the Urologist told me that unless they found something to worry about he would just write to me with a letter of discharge. I already know I have a shrivelled kidney that 14 years ago was functioning just over the level where they remove it but I haven't been under the care of any Docs since or had any follow ups - not sure why?

At the beginning of last month (Aug) I was hit with an awful UTI and so I called my Urologist's secretary to see if my results were back as I was worried about the pain in my right side/back too in case the UTI was affecting my already dodgy kidney. Her response was that my results were back and she was about to write me a letter. I asked if I could get any feedback over the phone but of course I couldn't, I mean it is only MY body right? It is only MY health but heaven forbid I am given any information about the test, I have to sit and wait for the "system", which in this case was waiting for her to type up a letter and send it by second class post! A week later I got my letter, except it wasnt a letter, it was an appointment for October to come back.

I will admit that it was a bit of a surprise as I honestly was just expecting to get a letter saying there was no change and have a nice day. To get an appointment means he wants to see me, to discuss the results. Does this mean that they need to do something about this kidney? Finally?! If so, does this mean I wont be in pain in my side/back any more? I can only dream of that at this point.

Last night I was hit with the familiar feelings of another UTI (my second in as many months) and this morning I am in agony with the addition of the familiar back pain. Oh the joy!

I have however been Googling (Dr. Google is more helpful than anyone else has been so far) and I have come across some very interesting information.

I have read about some symptoms caused by poorly kidneys (or CKD) on this website as well as others and I am interested that unwell kidneys can cause symptoms such as:

high blood pressure - I have this.

fatigue and weakness - always put this down to chronic fatigue as part of MS - could it be my kidneys?

loss of appetite, nausea; - Yup, all of the time!

itching, easy bruising, and pale skin (from anemia);

shortness of breath from fluid accumulation in the lungs; - I literally am doubled over trying to force air into my lungs on a regular basis and always put this down to MS Hugs.

headaches, numbness in the feet or hands (peripheral neuropathy), disturbed sleep, altered mental status and restless legs syndrome;

It is very easy to get carried away with diagnosing one's self when reading up on stuff like this and with what feels like very little help from my Doctors at this point, I dont have much choice! Unfortunately it can drive you a bit mad because these symptoms cross over so many conditions.

Here I sit, a year on from when I first went to my Doc and had a melt down and begged for help and I am no better off. In fact, I would argue that I feel a hundred times worse and I still have no help, no meds, no answers. I am also running low on faith and hope because it is bloody hard to stay positive when you are peeing razor blades on a regular basis, when you are dizzy and light-headed every single flipping day, when you wake up in the morning feeling like you haven't slept in a month, oh I could go on and on with the symptoms I feel every single bloody day!

My business is going down the drain because although I have my loyal clients, I am struggling to acquire new ones because I am simply too unwell and have no energy. I REFUSE to give up though, I have to get the answers and help that I think I deserve.

It's a lonely old world this one of chronic illness. I will sometimes mention not feeling well but I no longer talk about it much - when I do it feels like it is met with blank stares. It isn't that my family don't care but how bored must they be of hearing it? Probably as much as I am with saying/feeling it!

So, back to the Docs this morning for yet more antibiotics, which I loathe. Another long wait until I see the Urologist in October although you would think I would be used to waiting by now. After all, I saw my Neuro in April (the 12th to be exact) and he ordered more tests (blood as well as more MRI's, CT scans etc) and I am yet to get a follow up appointment for the results. It's like living in a third world country sometimes and it is very depressing!

So enough about me, how are YOU?

Birthday Wishes to Fairies & Angels

Good Morning Bleeps.

Today is a very special day because thirteen years ago my youngest daughter was born. My little Alice came into the world via c-section. It was planned because the placenta was too low for her to come into the world the natural way. My other three girls were all just above seven and a half pounds but little Alice came into the world at a tiny five and a half pounds earning her the nickname Tink (after Disney's fairy Tinkerbell).

It wasn't completely smooth sailing when she was born as she somehow contracted Staph infection from someone at the hospital and ended back in the hospital a few days after we got home (on a children's ward) on a drip for a week. I noticed she had some skin lesions before we were discharged on day five but I was told maybe I had scratched her or stuck the nappy (diaper) tape to her skin. Since she is my fourth child and it wasn't like I was a "new" Mum, I knew there was something wrong. They took a swab and sent me home with a medicated powder and I was told to just keep an eye on it. As the lesions spread over her body, the midwife that visited me at home jumped into action, called the hospital and demanded that they admit my baby for treatment. Thank God for her because if it had been left it could have turned systemic and since she was such a tiny peanut, quite dangerous.

My Baby Girl is a Teenager - how did THAT happen?

It was a stressful time but thankfully she recovered and we were home after a week. I refused to leave her side and so I lived on a diet of crisps and biscuits for a week, not ideal when I had just gone through a major surgery myself with the C-Section but since I had no family support (my family are all in the USA and my Ex's family were just AWOL) I didn't really have much choice.

Looking back on that time I realise that it was actually quite difficult and very stressful but it is now just a memory and I am thankful for her good health. Not all parents have it so "easy".

Today I saw a Tweet from the parents of a baby girl called Lottie. She shares Tink's birthday and today turns one. She is a miracle baby in so many ways because she was born with a rare disorder that meant her parents had to face the awful choice of either turning off the machines that were keeping her alive or wait and hope for a liver transplant that would save her life. Thankfully Lottie recieved her liver just in time and became the youngest and smallest baby to survive a liver transplant. Tomorrow her charity single will be released to raise awareness of her story and also the need for more organ donors. Please visit the website here and download the single tomorrow. Please share the link on your Facebook, Twitter, Blog or however you share ... if it wasn't for the gift of that liver then little Lottie probably wouldn't be with her parents today.

Happy Birthday Tink and Happy Birthday Lottie. May you both be blessed with love, happiness and most importantly GOOD health.

Lots of love.

xxx

Dinky Kidneys and Pancake Bums

Good Morning Bleeps.

For some reason I have woken up in a good mood today. I shouldn't be really because I have a stonking headache, a really bad one today. I am tempted to entirely blame the pressure in my head from MS because my eyes feel like they are going to pop out of their sockets but have a sneaky suspicion that it might also have something to do with the three large (read JUMBO) glasses of white wine that I had last night.

Wednesday nights are date night for me and my lovely bloke and we usually end up at the Indian restaurant at the end of our road (walk there, stumble back). The food is amazing and the staff are awesome, last night was no exception.

It was nice to get out and reflect on my day as I had my hospital appointment with the Urologist, which went quite well. He was a lovely chap and to be honest I felt honoured to be able to see him. The reason for this is that as I sat in the packed waiting room I heard the receptionist tell another patient that the Doctor would be reviewing notes and then deciding IF he was going to see you or if you would be just seeing his registrar. I sat there silently seething thinking that if that happened to me then I was going to walk out. I have been fobbed off one too many times in this lovely health care system of ours.

Luckily I mad the "cut" and saw the main guy who turned out to be lovely. Very smiley and easy to talk to. He reviewed my CT scan results and confirmed what I already know, that I have a "dinky" kidney. His words, not mine. I wonder if that is an medical diagnosis? Yes Miss, you have what is known as "Dinky Kidney Disorder"- Ha!

He is referring me for a scan to see if the kidney is functioning as it should and IF it is working at less than 15% they will whip it out. I am hoping not (of course), not because of being scared of surgery or being left with one kidney but purely for vanity reasons of not wanting another scar. Yup, judge away, I am THAT shallow!! I already have a scar on my tummy from a previous surgery and so I don't really want another one or I'll end up looking like a road map.

He said he would just write to me with the results and wouldn't need to see me again if the function was more than 15% unless I wanted him to see me in person. I told him that with all due respect, I am more than happy to tick an "ologist" off my list. I am sick of Doctors so I would rather NOT have another appointment unless it is entirely necessary. It's a shame in a way that he isn't a Neurologist because he had a lovely "bedside" manner.

So now that I am in a better frame of mind (weird how this thing gets you down one day and you are able to make your peace with it the next and yet the symptoms are still present) I have decided that I need to spring into action and start exercising again. It will help me feel better emotionally I think and plus I have gained a bit of weight since I haven't been able to run like I used to and that adds to me feeling a bit crap about myself. I need to lose that if possible, it is only 5-7lbs but it makes a big difference to how I feel about myself and I also want to tone up.

The thing I would like to work on most is my bum. I have never been one of those chicks that asks "does my bum look big in this" because quite frankly I don't really have much of an arse. I think the official term is "pancake bum". I decided (after seeing photos of myself in a tight dress) that I wanted a bigger, curvier "Beyonce" bum.

I would be tempted to go for bum implants (feel free to judge the shallowness of this - haters gonna hate!) but I don't think I am brave enough and I am certainly not rich enough so what IS a girl to do? I did some research and  found some knickers that have padding in the back. I actually got the idea after watching a reality TV show and I thought why not? Girls wear padded push-up bras or "chicken fillets" to bolster the boobs, why not the derrière too?

So the new padded knickers arrived in the post and I decided to try them out with my new, tight-fitting dress to see how much of a difference they made. Phil was there cracking up laughing at me as I popped the over-sized "chicken fillets" into the pouches on the inside of the knickers. I pulled them up (massive granny pants - not at ALL sexy in any way - think Bridget Jones) and honestly they made NO difference. I put on the dress and it totally was not worth the £20 I spent on them. I couldn't even see the difference. Phil decided to do the " squeeze test" and declared that he hated them, he likes to be able to grope my ACTUAL bottom!

I decided they were complete rubbish and as I took them off, the fillets fell out and plopped onto the floor. Can you imagine if that happened in a public bathroom? What would that look like under the door?? I was literally holding my tummy laughing, it was hilarious. I think I am going to embrace my little bum and maybe just work out to make it more "pert" instead. I will never have Beyonce's backside and until I win the lottery and can consider surgery then I will just have to live with it.

That's me for today folks. The girl with the MS symptoms, dinky kidney and non-curvy bum.

So enough about me, how are YOU?

Miserable Cow Bag

Good Morning Bleeps.

Sorry its been a while again, I have lost my mojo a bit where my blog is concerned. This is for a couple of reasons. I have been feeling really crap lately and feel like a broken record. I don't know why my symptoms seem to be so bad right now, whether is just "one of those things" or if it is as a direct result of the stress that I have been under.

Also a blog is weird when you think about it. I always used to keep a diary but there was always that tiny voice in the back of my head that would say "be careful what you write, someone might read it". With a blog you HOPE that people have an interest and want to read what you say but then that does open up the conundrum of "self censorship".

It's like recently when I was talking to my Mum on the phone. I had just had a bit of a cry and told her how crap I was feeling. While we were talking my Dad walked over to her desk (they work together) and he asked (I was on speaker) how I was feeling. I answered "fine", my bog standard response these days. My Mum responded with "No you don't, you feel awful, why are you saying that?"

Why DID I say that? What am I supposed to say?

I feel like shit. I am dizzy every day. My body is numb in weird places. My face is numb and my tongue tingles. I feel like I have creepy crawlies under my skin, always. My legs are heavy and I feel like I am walking with concrete boots on. My right arm is heavy and dead. I have muscles that twitch involuntary. My vision is squiffy and I am exhausted every. single. day. I have pressure in my head. It feels like my blood is iced water but my skin feels like it is on fire. Is THAT what I am supposed to say every time someone says "how are you feeling?"

How fu**ing boring!

I am so sick of feeling like shit every day. I am stuck in a miserable cycle of feeling like crap, drinking too much wine and feeling depressed. Statistics show high levels of depression in MS sufferers. I am not surprised. It is a very lonely world. Family and friends mean well but really, they can't possibly understand understand how it feels and I don't expect them too. It just makes me feel very, very alone and very, very sad.

Last week I had a complete melt down because I posted a status on Facebook about being sick of feeling nauseous all of the time. Another MS sufferer asked me if I had heard of Gastroparesis. I hadn't so of course immediately Googled it. Turns out that it can be yet another MS related symptom, the delayed emptying of the stomach resulting in the feeling of sickness. I lost the plot because I thought I knew pretty much anything that could/would happen and to peel yet another layer off the onion that is a chronic illness, well, it hit me like a ton of bricks. I literally cried my eyes out for hours.

I am back to the hospital tomorrow. Meeting the Urologist to discuss my shrivelled up little kidney. I am so bored with Doctors so part of me can't even be bothered to go. What's the point anyway? It isn't like I have met a Doctor that can give me any answers ... yet! 

So there you go, that is me right now. A bit of a miserable cow-bag with way too much on my plate. I need to let go of the stuff I can't control or "fix" as it is making me feel even worse. I have to concentrate on the people that make me happy, ignore the assholes that don't care and keep on keeping on, it's not like I really have a choice is it?

So enough about me, how are YOU?

Positively Positive

Good Morning Bleeps.

Yesterday was a bad day. I was super sad because my family left to go home to Florida and as always it hit me like a ton of bricks how far away they all are. Thankfully in these modern times of the internet (Facebook) I am able to speak to them most days but it isn't the same as being able to get/give that important hug on a down day, is it?

Thankfully my Sister and Mum are coming back at the end of next month as we have another family wedding to attend so that is something positive to focus on.

My legs were really bad yesterday. I mean REALLY bad and it makes me feel a bit worried. Lots of "what ifs" whirl around my mind but really what is the point of torturing myself with "maybes" because it might never happen. It hurts to walk right now but that doesn't mean that it is going to stay like this or (God forbid) get worse, does it? I have to keep thinking and believing that tomorrow I will wake up and the pain has gone again. Maybe I just over did it a bit with having company here and being out of my normal routine. I will try to rest a little more over the next few days and keep my fingers crossed that they start to feel better again.

I actually need them to feel better sooner rather than later because I have been eating like a pig over the last two weeks. I blame my sister (ha ha) and her love of English cuisine. Whenever she comes "home" she wants to eat all of the foods that she misses from her homeland. You know, the British greats like curry, biscuits and sausage rolls! It would have been rude to not join her, right?

Well I also have a love of dresses by The Pretty Dress Company (the dress that I was wearing in the photo in yesterday's blog was the Hourglass in Blush Pink). These beautiful creations are very figure hugging and I have the Red Wonder to get into for the next wedding. The problem I have is that with the leg pains I cant exactly get my fat ass back to the gym right now to burn off the sausage roll & pork pie calories that I consumed recently. I NEED my legs to stop hurting so that I can at least get in the pool or do some yoga/pilates. At the moment I am hurting to walk. Grrr!!!

I did get some messages after yesterday's blog from people telling me that sometimes they also wallow in a bit of self pity and that it is normal and OK to feel like that. I was comforted and felt less guilty reading those. I also got a couple of "keep positive" messages, which I know were meant to help but you know when you aren't feeling very positive it can be the last thing you want to hear, you know? I want to slap my forehead sarcastically and say "ooooh, stay positive? Why on earth didn't I think of that?"

I know people mean well  but just because someone is having a bad day/week/month, it doesn't mean they are negative or giving up. It just means it is a bad day/week/month and that is OK! OK?! If you are feeling low or in pain and want to lay in bed feeling sorry for yourself today then go for it, you totally have the right. Living in a body that hurts most of the time GIVES you that right and if someone tells you to "look on the bright side" or "keep your chin up" or my FAVOURITE "there are others worse off" then you have my permission to tell them to shove their heads up their bums - positively ;)

I have had some MSers tell me how they don't let it get them down, they stay positive all of the time etc. and I think that is amazing, I admire them so much and I wish I knew how to get there but sometimes (like yesterday) I just want to throw a little tantrum like a two year old about how it is not fair. Thankfully that isnt very often and I am able to keep on smiling.

So enough about me, how are YOU?

Still Here ... Just!

Good Morning Bleeps :)

I got a Facebook message from somebody asking if I was ok as I hadn't blogged for quite a while. Well, here I am my friends, still smiling - just!

I have had my lovely Sister, my wonderful Mum, my Nephew and Niece over for a couple of weeks from Florida. It feels like just yesterday that I was jumping up and down with excitiment as their taxi pulled up outside and this morning I waved them goodbye as I stood in floods of tears by the front door. I HATE living so far away from my family.

The first weekend they were here we travelled North to Liverpool for a family wedding. It was a lovely day and we drank and danced the night away. This is me with my Sister & Mum.

We had a journey from hell back down south the next day but then one could argue that we were complete morons for taking a train on a Sunday AND on the day of the Jubilee. It was pouring rain, none of us had coats, we got sent from coaches to trains as everything was disrupted and then just when we arrived back in Ashford and thought the nightmare was over, we realised we had left the backpack on the train with the CAR KEYS in it.

Nightmare! We got home in taxis and thankfully the bag was found and we were able to collect it the following day. We are able to laugh about it now but at the time we were all tired, cold and it nearly sent us all over the edge.

I have been dealing with a LOT of personal stress lately and I think that is why I am really struggling the last few days. I can really feel a difference in my legs lately and it freaks me out a little bit to be honest. I want to stay positive but the days of pain seem to be getting more and more. My legs ache to the bone, like growing pains but MUCH worse and they feel heavy. It is such an effort to stand up or to walk. I feel like such a drag, like a moany old cow bag and I dont like to feel like that. It isn't who I am!

Last week the wedding was amazing and I felt GREAT. I danced, I laughed and I didn't feel one ounce of how I feel now. Part of me thinks that I need to just be grateful for those great times and I AM but I am resentful and frustrated that it would seem that I then have to "pay up" for the good times. I don't want to always be in debt to my body but really, that is how I feel. A couple of days of fun = a couple of weeks of pain and exhaustion.

You see this is why I haven't been blogging. I don't want to be constantly complaining as I know I need to stay positive and enjoy the good days, roll with the bad ones etc. I KNOW this, I am not stupid and I AM grateful but lately I have felt so low whenever I think that this might be it, how it is going to be ... forever. How bloody bleak!

I also know that there are people out there a lot more flipping worse off than me so then I feel guilty for even moaning. It's all a bit crap and I feel like I am stuck on a hamster wheel of self pity and maybe even a touch of depression. Yuck! How do I get off?

People have been asking where I am at with the tests, results, appointments and such. I have had my CT scan of my chest and abdominals (with contrast), which was easy peasy compared to other tests. I have had more MRIs (with contrast also) of my brain, neck and spine. I have my next appointment with my cardiologist in August, a mere SIX months after returning the heart monitor that I was required to wear for a week (back in Feb). I guess I have to just assume (or hope?) that these ongoing chest pains aren't going to kill me in the meantime.

I don't even have a follow-up appointment for my Neuro yet but to be honest I am past the point of caring now. I have an appointment to see a Urologist in early July to see about this duff little kidney of mine but again, I am sort of apathetic about it all now. I have lost interest in the NHS and Doctors because to be honest I feel like they have no interest in me or my symptoms. I have reached my "bollocks to you all" point I think. It isn't like an official label of what is wrong with me is going to change my life or my symptoms. Does it really matter?

So enough about me, how are YOU?

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?

Breaking Point

Good Morning Bleeps.

Do you ever think about your breaking point? How much can one person take before they can't take any more? I can't stop crying this morning so my guess is that I am close.

I can honestly say that the last few days have pushed me pretty close to, if not over, the edge. I can't go into detail because as much as I like to share MY life, the things that have happened involve other people and I won't betray their privacy. It is suffice to say that the stress from outside sources have me at my breaking point. I know that people around me see this strong woman, someone who cracks a joke and has it all held together but let me just say that I am a flipping good actress because that is NOT how I feel on the inside.

I feel like crap today. Actually I feel like crap every day. This invisible monster with no name grinds me down on a daily basis. I am so bloody tired. My legs are like lead weights, my face is numb, I am dizzy, I have pressure in my head, tingles all over and the list goes on and on. I ignore it and get on with it the best I can but it is like a constant torture that never lets up. For most people this would be enough but for some sick, twisted reason the Universe keeps throwing more at me to deal with.

I had another sleepless night as the accumulation of everything that is going on with me was running through my mind and it occurred to me that I can't save everyone. I can't fix every single situation and I can't please everybody. I like to think that I am "there" for people, that I offer support when needed but I am thinking that sometimes I give too much of myself away.

I have too let go of some of the situations in my personal life that I can't control or "fix" because it is having an affect on my health. I feel more than just "down" and I am self medicating every evening with wine. I need to let some of this stuff go. I have to stop banging my head against this wall and start putting my health (physical and emotional) first.

They say that symptoms flare if you get stressed - no shit! My body is going mental today. All of my symptoms are magnified and I have just had yet another emotional meltdown. My poor daughter Kassidy is so lovely but because she is the last one to leave in the morning, she seems to always be the one who has to see me cry. I feel bad about that. No child (even if she is technically an adult now) should have to see their mother cry so often.

So enough about me, how are YOU?

Another "Ologist"

Good Morning Bleeps.

If you caught my blog yesterday you will know I was scheduled for an ultrasound of my abdominal area. I have been having right side pain that radiates to my back for ages now and I was worried it might be my gallbladder. Thankfully my GP was a good listener and referred me for a scan. Well, the good news is that the pain is not being caused by gallstones and my liver is nice and normal (that was a bit of a surprise but I'll definitely drink to that!) but it looks like my right kidney is being even naughtier than usual.

I was diagnosed with a "dodgy" kidney about 14 years ago. When I was pregnant with Madeleine (who is now 15) my Doctor didn't like the protein levels in my pee (eewww!!) every time I was there for a checkup. He sent me to a renal specialist and they did a bunch of tests (after my chick was born) and it was discovered that my right kidney was a shrivelled up little runt and was functioning at just over the level where they remove it. I think if it works at 25% they leave it in and if my very bad memory serves me correctly it was functioning in the high 20s somewhere.

My ultrasound yesterday revealed that it is super small and she feel that is what is causing my pain. She suggested that I am referred back to the renal specialist. Insert sarcasm here: Brilliant!

If it was only just above the functioning level back then (and it wasn't causing pain) and we are now 15 years on and it is now waking me up at night, does that mean it has deteriorated? If what is affecting my body is not MS and it turns out to be Lupus then it would sort of answer this question as Lupus can affect the kidneys (it is quite a common symptom apparently). I feel absolutely rung out both physically and emotionally.

I did read up on it and if you have a kidney that is duff it can affect blood pressure (mine is high), make you feel nauseous (often am) as well as causing a bitter/metallic taste in the mouth (get this a lot, that is why I wondered about my gallbladder). It also can cause itching and I am always itchy - I was putting that down to my nerves with whatever is going on the "is it or is it not MS" thing.

Honestly bleeps, I want to just curl up into a ball and not move. I am already under the Neurologist (obviously) as well as a Cardiologist for my chest pain/palpitations etc. Another specialist now? I don't even know what kind of "ologist" a renal Doctor is? I do know that I need this like a flipping hole in the head.

I have been awake since 1.30am with so much crap whirling around in my mind - surely everyone has their breaking point right? I was supposed to be going to Pilates this morning but there is no way I can face that today. I have work to do and a lot of emotional crap to try to process. I think I am going to have to blast a bit of Daughtry (my FAVE band ever!) and get stuck into this brochure job. I need to put my health issues and personal problems to one side for today because I am on the verge of losing my mind!

So enough about me, how are YOU?

Happy Hump Day

Good Morning Bleeps.

How are you today? Today I am back to the hospital (I know, right?!) I should be getting a loyalty card or something by now. Free parking would be a start since it costs a bloody fortune.

I am having my abdominal ultrasound because I have this pain on my right side that I am concerned about. It hasn't been as bad the last few days (touch wood) so I am hoping it isn't anything to worry about. Even though my liver function blood tests came back normal I always worry that my liver is in trouble because let's face it, by most people's standards I probably over indulge in the liquid grapes. I wonder if when they look inside of my abdomen, my liver will be in a jar like most other pickled items are? I doubt they will tell me anything today but it will be another thing I can cross off the list (hopefully).

I am dizzy today, I am tingly and my face is numb. I have symptoms every single day at the moment and sometimes it just really pisses me off. It would be nice to wake up just ONE day and feel good, you know? Especially because I want to exercise! Still, I just called the gum and the Body Balance class today is full (booooo) so maybe my Pilates DVD at home today instead.

I have ordered this dress for a wedding and I only have two weeks to get my body ready - I am already feeling better from the body balance (a combo of Yoga, Pilates and Tai Chi). Maybe it is psychological but I feel like I am already walking with better posture. Yesterday was a bad food day though, nothing all day and then a curry for dinner (and wine of course). I have been trying so hard to lose weight but for some reason it just isnt shifting. To be fair, I am only 4lbs heavier than I like to be (I know, that is a bit mental to worry about 4lbs) but it just wont go. Very frustrating when you are trying so hard to lose it. Might need to wear some Bridget Jones pants - oooo sexy!!

I hope you all have a very happy hump day. All down hill now to the weekend.

So enough about me, how are YOU?

The Journey Continues ...

Good Morning Bleeps.

I haven't really felt much like blogging lately as you may have noticed. I was building up to last Thursday (12th) with such high hopes of answers and sadly it was not to be. In fact, I left the appointment with nothing ruled out and just more possibilities added to the list.

I think maybe I am destined to live in limbo land forever. My Lumbar Puncture came back negative so my Neurologist wants to run more tests. He pulled up the pictures of my brain MRI and pointed out the small white plaques on my brain, which he said he isn't really worried about but then there is a big one right next to some lobe or other that he doesn't like the look of. He said he isn't ruling out MS but wants to do an MRI with contrast, a CT scan of my chest and a load more blood tests. I am starting to feel like a bit of a lab rat and also more than a bit sad.

Yesterday was what I would call a bad day. Dizziness, numb face, numb thigh, blood like iced water, vision all squiffy and exhausted. I sat on the sofa thinking "WTF is going on in my body and why is it so flipping hard for a Doctor to figure it out?!"

I have had many people write to me and tell me how they were in limbo for years, what I depressing thought. In some ways I am extremely grateful to my Neurologist. After all, he could just "rubber stamp" me as an MS patient and tell me to have a nice life. He said he doesn't want to stop looking, just in case. I respect him for that, even as frustrated as I am, he is doing his best to get me my answer.

He said he isn't "worried" about my symptoms (I hate when he says that) and I do get when he means. I don't have symptoms that will kill me (although when the chest pains hit I do sometimes worry about dropping dead of a heart attack) but like I said to him, even though my symptoms might not be life threatening, they are affecting my life every single day.

I am unable to take on photography work as I don't know from day-to-day if I will be able to drive or if I will be too dizzy or fatigued. What can he do though? What did I expect from him? From a medical point of view he is doing what he can do. I have to find a way to make peace with my current situation and just ride the ride.

Leading up to my appointment I had lots of good luck wishes, which was so lovely and so appreciated. A couple of my friends told me to "put it in God's hands" and trust "His" plan. Now, I have a confession; I am NOT religious. I am not even sure that I believe in God. I struggle with it because I WANT to. I really do but I just don't know if I do. I am on the fence. I wouldn't say I am an atheist but I am not convinced either. I do believe in fate. I do think that everything happens for a reason.

As I sat in the office and my Neuro started talking about lobes and the biology of the brain, my gaze wandered out of the window and I found myself asking "what am I here for? why is this happening?"

Who I was asking I don't know really. God? Myself? The Universe?

If it wasn't for that brain MRI I would be starting to think it was all in my head and that I am going mad. Maybe I am not meant to find out, maybe this is my fated path. Maybe I am supposed to just blog and share, to reach out and maybe touch people that could possibly be in a similar place, so that they know they are not alone.

Over the last few months I have made some really good friends, people that I know I will have in my life forever. If it hadn't have been for getting sick and starting my blog this would never have happened. Maybe this is the answer to my question of "why?"

I left the appointment feeling so very sad. Phil had arranged to take Megan to Karate so I had the house to myself. I poured myself a large glass of white wine and had a bloody good cry. I felt so sad and so lonely. I had put so much of my energy into that appointment and it was such an anti-climax when I left, still none the wiser and waiting for more letters for yet more tests and appointments.

I am exhausted both mentally and physically but I will just have to keep my chin up and get on with it. I don't really have much choice do I?

So enough about me, how are YOU?

Two More Sleeps

Good Morning Bleeps.

I took my first body balance class on Saturday, which went really well. It is a combination of Yoga, Pilates and Tai Chi. I was surprised how hard it was actually and my muscles have been quite sore over the last couple of days in that nice "worked out" way.

I hope you all had a lovely Easter (or weekend if you don't celebrate Easter). Mine was quite low-key, the kids of course had lots of chocolate and we had a family dinner with turkey and all the trimmings.

The girls had their usual egg hunt, which I wasn't going to do this year as I thought they were too old for it. I mentioned to Phil that I wasn't going to do it and he said "OK" but with a face that said "big, fat meanie" so I felt bad and did it anyway.  The girls, of course, loved it. Funny how kids think they are so grown up until the holidays come and they still want to hold on to their childhood traditions. Either that or it is just an excuse to get even more chocolate, can't blame them for that!

Yesterday was a bank holiday here in England and so quite predictably, the weather sucked. It always seems to happen. Holiday Monday = pouring rain. It actually didn't bother me too much because I felt awful and so it sort of forced us to stay home. I am used to the left side of my face going numb but yesterday my whole face was numb, including my tongue, lips and right down on to my neck. I felt like I was wearing a mask. I also felt dizzy, my eyes were cloudy/floggy and I had electrical zaps in my fingers and toes.

The kids (and Phil) played the WII for a few hours so I just sat and read my Kindle (I am loving the second book in the Hunger Games series right now) and tried to put my symptoms out of my mind. I cooked a hotpot with the left over turkey, which turned out yummy. I also baked a loaf of bread. I briefly mentioned my numb face to Phil but other than that I don't think anyone in the house was aware of how crummy I was feeling. I think I pulled it off OK.

Sometimes I wish one of my MSer friends lived here so that when I have a day like yesterday (and it would seem that today is going to be the same as my face is numb and I am dizzy) I could have a bloody good moan to someone and not feel guilty. I don't like to talk about my really bad days now, like I said I did mention to Phil that my face felt horrible and mask-like but that was it. I didn't go into detail and although there were moments when I wanted to let the tears flow, I held it together. Nobody has said or done anything to make me feel like I can't talk about it, it is just that I feel a sense of boredom from people when I do. It might be something that I am imagining but it just a gut feeling, I wonder if other people with chronic illnesses feel like this? Like a boring scratched record?

I don't mean that in a self-pitying "poor me" sort of way at all. It is what it is, I can't change it (whatever "it" is) and I certainly can't control or help it. It is just something that makes me think sometimes, usually on a day like today, when my symptoms seem to be running wild.

I only have two more "sleeps" as my kids would say until I go to the Neuro to get the results of my Lumbar Puncture and spine MRI. I had my original appointment at 12.45pm but got a letter the other day to let me know they have changed my appointment time to 4.45pm. I thought to myself  "bloody hell, like I haven't waited two months already, now I have to wait another four hours". Silly I know because it is just a few hours more but I already feel like I have waited a million years and I just want to know. I have gone back to being an insomniac over the last week and I am sure it is because my mind is racing and my stomach is in knots over the whole thing.

What if they are negative and he isn't happy to give me an official diagnosis (again)? Will I just stay as the "The Girl with the Abnormal Brain Scan?" Not quite as cool as "The Girl with the Dragon Tattoo" is it? I do have a Tinkerbell tattoo so maybe I could just be "The Girl with the Tinkerbell Tattoo and Lesiony Brain". Hmm ... thinking that won't be a best-seller either!

Limbo sucks! I am just trying to keep my quickly fading humour about it all.

Anyway, the kids are still off school and I have a brochure to work on so I think Phil is going to take them to the cinema later. I will try and keep myself busy because I am going to pretend I don't feel like crap and just try to get through the next couple of days without going mad.

So enough about me, how are YOU?

Floating in Denial

Good Morning Bleeps.

What a crap night. I woke up at 3am and that was it, wide awake. Insomnia sucks, doesn't it? I think the worst part for me is laying there in the dark and quiet because my mind starts racing with all the things I am stressed about, right now that is a LOT.

It occurred to me last night that I have been floating down that great Egyptian river - denial!

When I went in for my brain MRI results in December I was fully expecting to be told that there was nothing abnormal to see. After all, when my Neuro thought I had MS when I was in my 20's that is exactly what did happen. I had all sorts of tests leading up to the MRI back then. One was with electrodes all over my body testing my muscles responses to electrical currents and another where the Doc put hot and cold on my shoulder blades, asking me to tell him what I could feel. Those tests were enough for him to send me for the MRI but it was clear.

When my Neuro's secretary called me in December saying the Doctor wanted to see me to discuss my results I just thought it was to put my mind at rest. That was not the case, in fact he showed me all of the white matter on my brain and told me that yes in fact, there were lesions and this was MS.

I was OK with the diagnosis, almost relieved I suppose. Sure I had some up and down moments as you would expect. I was joking about it one minute and crying the next but I was able to take it on board. When I went to see him on the NHS in January (because I was a private patient up until then) as many of you know, he changed my diagnosis back to "probable MS" pending more tests.

I think somewhere between January and now, on some level, I have convinced myself that I do NOT have MS. I have been consumed thinking about the "next step". My mind has been going along the lines of "when I get the negative results next week then I will go back to the GP ... blah blah blah".

It hit me last night that I don't actually know what he will say or what my results are. I have just been assuming. I have been fully expecting the Lumbar Puncture to be clear as well as the spine MRI. I reminded myself last night that I thought that in December too with my brain MRI and it wasn't the case.

What if I go next Thursday and he says that the other tests confirm his original diagnosis? That thought hasn't really been occurring to me, but it would seem that the reality of it has hit me.

I was laying in bed with that feeling of adrenaline rushing through my body, that panic feeling that you get when you think of something awful happening. I haven't felt like this up until now and maybe that is just the body's way of protecting itself. After all, I have had to wait for two months for these results and if I had felt this fear for all that time then surely by now I would have gone completely bonkers.

I really thought I had made my peace with this but actually I haven't at all. If he confirms it is MS then I am going to be a mess. If he tells me it is negative and I am back in limbo I am going to be a mess. Basically I am already a bloody mess. Sure on the outside I am holding it together but if you were to slice me open there are thousands of little Karens running around in circles with their hands in the air, screaming obscenities.

Bugger. Bugger. Bugger.

It isn't like it is going to change anything one way or the other. My symptoms aren't going to just disappear one way or the other are they? I don't believe in all of the drugs so I won't be taking any "treatment" other than my vitamins and trying to live somewhat healthy. So, really, does it matter? When I think about it on a conscious level I am able tell myself that it really doesn't. The LABEL doesn't matter or make a difference. On a different level I am shitting my pants. I am genuinely scared and I don't even know why?!

Oh well, one day a time I suppose, my guess is that today is going to be a long one. I wish my sister & my mum lived closer. It is at times like this that I really, REALLY feel the distance between us. It is at times like this when I wish they could just pop over for coffee and give me a hug.

So enough about me, how are YOU?

The Right Direction

Good Morning Bleeps.

How the heck are we all?  I am super-duper tingly today and my face is numb as usual. I  have black floaters in my eyes and the cold pressure is back in my head (on the back left side). I also have this flipping pain in my right side that has been constant for twelve days now.  *sigh*

I have my second yoga class today and I am sitting here thinking HOW? How the heck am I going to get through this class when quite frankly I am struggling to get on and off the toilet with these sore leg muscles from my class on Sunday? Too much information maybe? Oh well, you know me, I do like to share -  ha!

I can hardly move my arms (I can't tell which muscles are hurting most, the biceps or the triceps) so the Sun Salutation should be interesting. In case you don't know what that is, you basically go through a range of movements and one of them involves lowering yourself down (like a push up) and then pushing back up again. Yeah, right! That will be a challenge since lifting my coffee cup is making me feel like a weight lifter today.

The upside is that since I started my diet on Saturday I have already lost a couple of pounds - woohoo! Two down, six to go! I'm definitely heading in the right direction. In fact, I just treated myself and ordered some new fancy undies and a pretty dress to celebrate (that's a good enough excuse for me). Some might say the new lingerie is more of a pressie for Phil (and they would be right haha) but he deserves it for suffering through yoga with me.

Yesterday I told my daughter Kassidy that I had ordered a Yogalates DVD for when I can't get to classes. Her reply was "Mum, you already have that".

"No I don't." I replied.

"Mum, it's in my room. You have it." She answered.

Bugger! That is SO like me. Order a DVD with great intentions, never take it out the wrapper and forget I own it altogether.

I have never actually re-ordered one before though, this was a first.

Luckily there are about eight DVDs in the Yogalates series and the one I ordered (Yogalates for weight loss) is different to the one I forgot I owned, which is Yogalates for Body Toning. Cool, I am building up a collection - might work better if I actually use it though!

I am usually quite good when I set my mind to something although I tend to be an "all or nothing" person. I am either stuffing cheeseburgers and chips or I am starving myself. I am usually the same with exercise too but I need to re-adjust my attitude with Yoga. I have a friend who is a Yoga teacher and she reminded me yesterday that Yoga is a journey, I won't be able to just pop up on to my hands on the first class. The head strong, competitive Leo in me is NOT happy about this but I will have to learn some patience as I build up strength.

I am trying to not think about next week too much. I am sort of dreading getting my results. I have a good friend (Judy) who is also getting her diagnosis on the same day. She has to endure a 90 minute MRI beforehand and then the Doctor will interpret the images for her right there and then, letting her know if it is indeed MS that she is dealing with. In some ways, because she has become such a special friend to me, I feel that we are sharing this journey even though she is on the other side of the globe. I will be mentally holding her hand, as I know she will be mine.

I am not sure what I want to hear - does that sound weird? In one way I want to hear "The lumbar puncture and spine MRI came back clear so it is probably not MS" but another part of me wants an explanation to all of these symptoms. I am also nervous about starting the whole process again. I have been in limbo forever and so the thought of having to start all over is quite depressing. I know I will go back to my GP and he will refer me to a Rheumatologist for Lupus screening but goodness knows how long the waiting list will be and I can't afford to pay private again. I suppose I shouldn't jump the gun but it is hard to not play the "what if" game. All I know is something is going on - I have the brain MRI to prove it. At least it is nice to know it isn't in my head, well, actually it is but you know what I mean.

Anyway, for today I will just concern myself with trying to move like a normal person and not a robot and get through Yoga. I am looking forward to doing something good for my body again. I am hoping that it sort of makes up for all the Pinot Grigio I had last night.

So enough about me, how are YOU?

Getting Back To The Gym

Good Morning Bleeps.

I hope you all had a good weekend, I certainly did. We were kid free this weekend so it was just the two of us for most of it, it was like a two-day-long date!

Saturday we went up to Blue Water, which is a lovely big shopping centre here in the South East. We did a little bit of shopping followed by a lovely light lunch of chicken breast with a side salad. I wanted the wild boar burger but I started yet another diet on Saturday because we received our third wedding invitation and it was a wake-up call that I need to get toned up so that I can wear the sort of dresses that I like. I did cheat and have a couple of glasses of wine with lunch but I passed on dessert so surely that just balances it out?!

After lunch we went to watch The Hunger Games.Phil treated us to the the "Gallery", which means you get your own entrance and lovely big, sofa-like seating. You also get chocolates, nachos and muffins, ALL of which I resisted. I know, right?! How good am I?

I am half way through the book and so there was a tiny part of me that was worried about seeing the movie before I had finished reading in case it made me not want to bother but that hasn't at all been the case. I really liked what they did with the film and although I now know how it ends I am still unable to put the book (or in my case, Kindle) down.

Yesterday I did my first ever yoga class. I was so nervous when I woke up, I did my usual symptom inventory list in my head and thankfully I was feeling OK, the only thing bothering me was the side pain and nausea that seems to be with me constantly these days. Phil was going to do it with me (he has done Yoga before) and so I wasn't going by myself, which meant there really wasn't an easy way to back out. I didn't want to back out but I was literally shaking with nerves when I got there. I was also a little worried that the pain might get worse.

I spoke to the teacher and let her know that I am waiting for my official diagnosis and that I didn't know how much I would be able to do. She was great and all through the class kept asking me if I was OK. I managed to keep up and found some of the poses familiar because my old personal trainer used to have me doing some of them. Anyone who thinks that Yoga is easy hasn't been to a class like this, I came out sweaty and my legs shaking as if I had been for a long run. Granted I haven't done any exercise in months but still, she put us through our paces.

My body did sort of rebel in the afternoon, my face went numb and there was an electrical storm raging wild through my limbs. The black floaters in my eyes were plentiful although I can't be sure if this is because I pushed myself hard in the class or if this would have happened anyway. I wasn't about to let it put me off though and called the gym to schedule my next class, which will be tomorrow. The one good thing was that the pain in my stomach/side was gone. Maybe those pain relieving endorphins had worked their magic?

Today I can hardly move, I feel like I have been hit by a bus. I am hurting in muscles that I didn't even know I had. Being an ex runner, I am used to feeling this sort of thing in my legs but I never felt such stiffness in my upper body. I am taking this as a good sign that I worked my muscles, they will tone up if they like it or not!

For any of you out there that are in a similar situation as me as far as feeling like you want to do something to increase your fitness but are no longer able to go to the gym, if you are able to find a yoga class near you then try it out. My sister has been recommending it forever (she is a huge Yoga fan and says that doing Yoga got her in the best shape of her life) and so I think she will be pleased for me, I can't wait to tell her about it.

So enough about me, how are YOU?