Lazy? Really??!!

Good Morning Bleeps.

A few times this week it has been implied that all I do all day long is sit on the sofa (in fact, it has actually been said this week; twice!) and I am getting sick of it.

Yeah OK so I sit on my arse on the sofa but WITH A LAPTOP - WORKING!!!

What about the millions of people that, right now, are sitting on their bums in front of a computer, doing what they do, in an office in London, Manchester, Canterbury or where ever they work? What makes them different to me? Location? The suit? Commuting? The lunch hour with colleagues?

OK so some days I sit and talk to clients on the phone in my PJs but they don't know that. I am still getting the job done, whether it is a website or a brochure.

I also write this blog (obviously) and I have started my first novel. So you see, as much as some people might think that I just sit and eat chocolate, file my nails and watch daytime TV, the reality is much different.


Granted I also used to also balance that with photography (you can see my work at www.tinymoments.co.uk ) but am not accepting new jobs right now as it is so physical and I don't know from day to day if I will be too dizzy to drive or have the energy. I actually feel SAD about this, I feel the loss of not being able to do something I love. Some people need to stop and think before they make stupid, hurtful comments. I don't need to be made to feel worse about myself than I already do, I am already struggling with my self worth since getting ill.

Now don't get me wrong, if I ever win the lottery I will be singing from the rooftops that this shop is closed. I won't be one of those people that say if they win the lottery "they would still work, blah blah blah". Frig that! I will be horizontal on a beach somewhere, sipping sangria and I will be making no apologies for it.

As you can probably tell I am really frustrated. I think it is because I am pushing through pain to keep on working when all I really want to do is lay in bed and feel sorry for myself. When you are putting all of your energy trying to keep going, even with pain in your gut that feels like you are being stabbed and someone makes a dumb comment, well it is a bloody insult.

I guess I shouldn't really give a crap but I am feeling sensitive right now. I don't need other people making me feel like I am lazy when that is the very last thing that I am. Sure, I won't lie, I am struggling to juggle it all (work and home) especially since my cleaning company let me down and trust me when I say there isn't a line of people in my house volunteering to clean the bog! I am exhausted all the bloody time but I don't WANT to feel like this.

NEW FLASH: I want to wake up full of energy and NOT feel like shit on a stick every day. I'd love to bounce around my house like Mary Flipping Poppins, working, cleaning and being super woman. If any of you know how I can achieve this then please, let me know!

So today I am pissed off, you might want to approach with caution (or wine!).

So enough about me, how are YOU?

The Weeding Tool

Good Morning Bleeps.

What another beautiful day it is in the South East of England, it is such a mood changer for me. I am in pain yet again (boooooooooring) and feel nauseous as usual but I actually don't care. The sun is shining and I have lots of work to be getting on with today - no time for feeling down.

I was thinking about changing the name of my blog to "My Journey through Limbo Land and into the unknown world of maybe MS or possibly Lupus or maybe something entirely different that Doctors are yet to suggest" but I couldn't fit it on the banner. Hmmm, whatever is a girl to do?

Through my blog I have made many new friends and it makes me feel really blessed. I have such a support system around me and I am humbled by it. I have people that I can turn to when I am feeling down that pick me up and offer me support, ironically most of them I have never met in person.

One thing that seems to come up a lot when I talk to my friends is that the people that you THINK will be there for you when you get sick quite often are not. Getting ill is an amazing weeding tool. I have learned a lot about human nature since this all started.

In particular, I have learned that sometimes your best friends can be people you have never even met. Today I would like to talk about a couple of these people. I have met many but for today I want to focus on these two lovely women.

I got chatting to one lady (Lisa) after she made a comment on my blog link on Facebook. She was so lovely and was trying to get more of an understanding of her friend's MS. I think her MSer friend had shared a link to my blog and before long we got talking. One day another lady (Kirstie) commented on my blog and Lisa said something along the lines of "Kirstie, you read Karen's blog?" It turned out that these two ladies know each other and are good friends in real life, what a small world.

I have become very close to both of them and they have been such great sources of support. Kirstie is a total inspiration to me because this woman has been through hell. She was fobbed off by Doctors for years, dealt with the same "it's all in your head" attitude until she started to think (like me) that maybe she was going mad. It turned out that they FINALLY discovered that she had a brain tumour. A freakin' BRAIN TUMOUR on her brain stem but, oh yeah, it was all in her head. I want to hunt down those Doctors that implied she was imagining her symptoms for YEARS and put this beautiful woman's life in danger. Jerks!

She endured a nine hour life saving operation just a few months ago and is still trying to recover. She was then accidentally exposed to chicken pox and had to go on a high strength chemo medication because it is SO dangerous for her to get sick. She has been left with other effects from the surgery that she continues to fight and deal with but let me just say that this woman, this friend of mine who has been through and continues to go through so much has been such a massive tower of strength to me, selflessly putting aside her own pain to cheer me up.

I talk to Phil about "my friend Kirstie" or "my friend Lisa" as if I have known these women for years and yet even though I have never met them in person (yet!) this is exactly how I feel.

I was chatting to Kirstie the other day and she said "I have friendships and support that  I NEVER thought possible. Friends that I THOUGHT were close to me were not at all - in the past few weeks I have learnt what friendship truly is."

I couldn't have put it better myself. Isn't it amazing though that someone who is recovering from a brain tumour operation is there for me every single day and yet there are people in my life that I thought were friends (and in some cases family) that don't even bother to pick up the phone or send an email. It has made me toughen up a LOT and made me realise who really matters.

Kirstie is my inspiration, I don't think that even she realises how strong she is, how beautiful she is both inside and out.

Lisa is one of life's good people. She has a heart of gold and is constantly opening her heart (and in some cases her home) to help out people in need. I can't go into details without possibly betraying a confidence but let me just say that she has gone above and beyond what most people would do to help out people she either hasn't seen for years or in some cases hasn't even met. If we could bottle up her kind heart then the world would be a much better place to live in for sure.

Is it a bit weird that when I think of all the lovely people I have met (and there are too many to mention) that I am actually almost grateful to getting ill. Without this illness (whatever it is) I wouldn't have started to blog and then my path might not have crossed with all of these wonderful people.

I get messages from people saying that my blog helps them but really it is everyone that reads and comments that help ME. To my friends who have been disappointed by people who you thought would be there and are not, don't give them your energy. You can't make someone be there for you (even if it hurts) but just take a moment to look around and think about the people that are constant and true in your life, they are the ones that really matter.

So enough about me, how are YOU?

A Right Pain

Good Morning Bleeps.

I hope you all had a lovely weekend and start to your week. I haven't felt much like blogging because to be honest I feel a bit exposed and creeped out.

Someone from my past has been reading and then taunted me by text calling them my "online rants" and "nonsense", using my illness as a weapon against me by saying cruel things about "not being right in the brain". Well duh, I think my abnormal brain scan showing lesions has already confirmed that not all is right in my brain, a bit sick to actually use this as a way to be abusive though I think. It has left me feeling stressed and vulnerable and that is the last thing I need right now as we all know the direct link between stress and symptoms. I almost thought of not blogging any more but then this person wins and I will be allowing myself to be controlled by their nastiness. I have decided to ignore the abuse and carry on because I really feel it helps to put my thoughts "out there" and I have had enough feedback to know that some of you relate to what I say.

On the upside my blog hit over 20,000 views this weekend, which just blows my mind because I only started it (not even) three months ago. I am honoured, humbled and very, VERY grateful. Thank you!

Yesterday I ended up back at the Doctors. I am still struggling with this pain in my right side along with constant nausea. I wake up feeling sick (watery mouth like I am going to throw up) and it gets worse after I eat. I saw a different GP, in fact he is the main Doctor at the practice but it used to be so hard to get to see him because he split hours with another surgery. He has now come back full time so (fingers crossed) it should be easier to get appointments with him.

I explained what was going on to him and he has ordered an ultrasound of my abdominal area to check my gallbladder. He had a prod around my tummy and there was pain where the gallbladder is. I also often get a bitter taste in my mouth, usually after I eat, so he wants to just check it out. The pain today is bad, going once again through to my back. I am feeling sick but at the same time I am nervous about eating because the nausea usually gets worse once I do. Even my black coffee today made me want to throw up.

I have had this pain before but it usually comes and goes and it only really ever at night. I haven't had this nausea with it before either but now it has been constant for a week so I am glad that he has ordered tests.

I had a friend who was in pain and left it, just assumed it was MS related and she ended up in the hospital with a severe kidney infection.

I don't think this pain has anything to do with MS. They do list abdominal pain and nausea as a Lupus symptom so that brings me back to wondering what really is going on with me. All I know for certain at this point is I have an A4 sheet of paper almost full of symptoms along with an abnormal brain MRI. Some symptoms are more MS based, others scream Lupus and some cross over both. I feel like I am going mad. It's funny too because I get messages from people saying things like "It definitely sounds like MS to me" or "it doesn't sound like you have MS to me based on your symptoms". At this point I don't really care what it is, I just want to know so that I can get on with my life and find a way to manage the symptoms.

I talked to my GP about the "probably MS" diagnosis and the brain lesions and he agreed that if my Lumbar Puncture and spine MRI tests come back clear that we should probably explore the possibility of Lupus, this reassured me as I was really worried I would be just left in limbo. He told me that after I see my Neuro on April 12th, depending on what he says then we will look at a referral to a Rheumatologist.

I explained to him that feeling like this every day is affecting my family and also my work, I feel like my life is just on hold. This weekend Phil ended up taking the girls down to the beach by himself because I literally didn't have the energy to make the five minute walk down the hill. I felt like I let them down.

So today I will try to get some work done although it has been a challenge this week because of the pain but as the saying goes, the show must go on.

So enough about me, how are YOU?

Losing The Plot

Good Morning Bleeps.

Actually it is NOT a good morning. I am in so much pain and was yesterday too. I was fighting back tears as I kissed Phil and the girls goodbye when they left for their day a little while ago because I feel really down.

I am sort of used to dealing with some of these symptoms now and nothing is really stopping me in my tracks but this pain, well, I actually don't know what to do with myself.

When I was pregnant with my (now) 15 year old daughter Madeleine, my Doctor was concerned by how many urinary tract infections I was getting. I had suffered my whole life with them so I didn't really think about the "why" and just accepted it as part of how my quirky body works. I was sent to a specialist who ran a whole bunch of tests and it was discovered that I have a dodgy right kidney.

Now I know that "dodgy kidney" isn't very technical but I can't remember the exact diagnosis. What I do know is that my little right kidney doesn't function as it should but was functioning "just enough" that it didn't warrant taking out. I was advised to take a tablet every night when I went to bed to keep infection away from my bladder (and to reduce the risk of damaging the kidney any further). The problem is that I have a bit of a phobia of medication. I don't even take a pill for a headache and so I never did as I was told. I know, big shock!


Then a few years back (probably about five) I started getting abdominal pain on the right side, it used to wake me up at night it was that bad. I instantly thought of my poor liver because back then I was in a very unhappy marriage and drinking too much wine (not proud but just being honest) and so I went off to the doctors. He ran full blood tests (including liver function) and ordered a complete abdominal ultrasound. Everything came back fine. I remember laying there while the technician looked at all of my organs asking "is my liver ok?". He reassured me that it was fine and I won't lie that I was very relieved (and I confess somewhat surprised).

The pain continued so I went back to my GP who decided to send me for a colonoscopy. I know quite a lot of people that have had this test and reassured me that there was nothing to it. Yeah, right. Let's just say never again and leave it there. Nothing sinister was discovered and so the abdominal pain was never really explained other than it was suggested that maybe I had IBS. Personally, I didn't buy it but what else could it be? I'd had the tests and nothing else was flagging up as a possible reason so I just accepted it and carried on. Eventually the pain subsided by itself.

Yesterday I started to get serious pain in my right side and it kept waking me up all through the night. I went to bed by 8.30 because I was literally dead on my feet. I felt like I had been hit by a bus. I was even struggling to walk, my legs were so heavy. I was having to make a conscious effort to tell my brain to move each leg and I was exhausted.

Today the pain is still with me. It is in my back on the right side but is radiating right through my body. I can't really tell if the pain is coming from my kidney, from my abdominals or both! All I know is that it really bloody hurts and I don't know what to do about it.

It is at times like this when Lupus pops back into my mind because I know that Lupus can affect internal organs, mainly the kidneys and heart. My visions is shit again today and I am dizzy. My face is numb, my legs are heavy and burning. I am so pissed off with feeling like crap every bloody day. Honestly, I feel like I am going mad.

What do I do? Suffer out the pain and hope it goes away again? Go back to my GP to be treated like a hypochondriac nut job? No thanks. I honestly want to cry because I feel so alone and like I am going crazy. Sometimes I wish that how I was feeling on the inside would reflect in the way I actually look because then maybe other people could understand just how awful I feel.

I worry also because I have no faith in the NHS. My Uncle was sick for TWO YEARS and was fobbed off by his GP. He was suffering with pain and throwing up. They ruled out heart issues but ran no other tests, they just told him it was heartburn. He collapsed at work and was taken by ambulance to hospital, again all the heart stuff was checked but nothing else and he was discharged and sent home. Maybe I am too simplistic in the way I think but if someone is COLLAPSING and throwing up and you rule out one thing, don't you keep investigating until you figure out the cause?

He collapsed again and went to A&E. He was FINALLY diagnosed with gall stones but because he had been fobbed off for so long, one of those stones managed to block up his bile duct causing his pancreas to be poisoned. After two weeks in hospital his organs failed and he died. He was 41. This was just three years ago and I will never get over the anger at the way he was failed so disgustingly by our medical system and it certainly doesn't fill me with confidence, especially since I feel fobbed off too.

So my friends, what do I do? I don't feel like I have a Doctor that I can go to and even if I did, I bet they have a little note on my file that says "whack job alert, just smile and nod". The reality is that in the last two years I have only been to see them maybe 8 times and I certainly am not one of those people that is down at the surgery every week.

I have contacted a private Lupus clinic in London but testing and appointments will cost hundreds of pounds so unless I win the lottery, that isn't going to happen. Oh I don't know, hopefully the pain will just go on it's own and I will be able to get back into a positive mind-space again. Today I am sad, in pain and my mind is in over-drive with all the possibilities of what this might or might not be. I just have no faith in the NHS right now and this makes me feel scared.

So enough about me, how are YOU?

Always Look On The Bright Side

Good Morning Bleeps.

Another good nights sleep (yay) but woke up feeling rubbish again (boo).

The pressure in my head is unreal, like my brain is going to explode. My vision is blurry and the black floaters are still in my eyes. I am tingly, my face is numb on the left side and quite frankly, I'm pissed off. The room is spinning so much and I am really tired of feeling so dizzy, it makes me want to throw up. My blood is once again running cold through my veins and my skin feels like it is on fire. The feeling of bugs crawling under my skin is back. Brilliant.

I really hate that this is something I can't control. I have had two good nights of sleep and taken care of myself. I haven't overdone anything, I should feel quite good. I get that MS doesn't work like that but it frustrates me that it doesn't, that you can do everything right and still feel wrong. OK, so Dominos pizza isnt a healthy dinner but I only had 2 slices and there is calcium in the cheese right? Come on, work with me here.

They say that stress makes MS symptoms worse but how do you avoid it? I have been under a lot of stress lately but life is stressful in general, what are you supposed to do? I am so lucky in my life in as much as I have such a wonderful man by my side who loves me and who I adore in return. I have great kids who are my whole world and fill me with joy every day. I have a great family and fabulous friends who are so supportive. In my personal life I am blessed.

It is all the other crap that life throws at me that stresses me out. The outside world that likes to poke it's nose in and stir things up. We all have every day stress and I need to figure out how to just "put it in a bubble" and blow it away because when I let it get to me I end up feeling physically rubbish.

I will just ignore the negative forces today and focus on what is wonderful.  As it is Wednesday it is custody switch over day and I get my two youngest girlies back home. I LOVE Wednesdays for this reason (except the ones where they are going to their fathers for a week). As I do most weeks, I will trawl my favourite recipe website to see what great family dinner I can make because one of my favourite times is when we all sit around the table together and swap details of our day. We do this most days as both Phil and I feel that it is important to eat as a family, it keeps everyone connected. Life can be very busy and so taking that hour every day to sit, eat and talk is very bonding.

I am going to have to work hard to ignore these symptoms today because they are plenty and are challenging my positive outlook BUT I will win this battle. I do honestly believe that our thoughts can affect our physical symptoms. I am thinking happy thoughts today, even if my body is working against me.

So enough about me, how are YOU?

The Secret

Good Morning Bleeps.

Yesterday I tweeted out to the universe asking who had turned my blood to iced water. This is a sensation that I get quite a lot recently, sometimes in my head (you may remember me talking about the ice cube in my brain) and often in my arms and legs. It literally feels as if my blood is running cold. I got tweeted back by a friend who said "oh bless you" to which I replied that I wasn't bothered by it, just taking it in my stride. He commented that I was "strong" (I don't think I am) but I let him in on the fact that I certainly have my days where I am full swing throwing a pity party for one (balloons and all) but yesterday wasn't going to be one of them.

I was still riding high (although hung over) from my great night in London and NO WAY was I going to let any symptoms get me down. The sun was shining and my mood was good. I have also started reading a book that was recommended to me by my lovely friend Lisa called The Secret, which basically applies the principle that whatever we put "out there" in the Universe is what you will get back. So for example if you are wearing a white dress and you constantly send out thoughts of "I bet I spill something on this white dress" you undoubtedly WILL spill something. 

So with this in mind I decided that I would not send out any messages of "I hope I don't feel any worse" or "I wish these feelings would go away" and instead I would think of "I feel great, the sun is shining and today is a good day". Logically this would mean that the Universe should actually send me a good day. I think that is how it works, although I must confess that I am only on the first chapter and have a lot of reading to do yet.

We decided to have an early night (what is it about getting older that causes hangovers to last for days instead of hours?) and was in bed by nine. As I went to bed my vision was really squiffy. The black floaters in my eyes seemed to have decided to get friendly with each other and hold hands, creating a dark grey, cloud-like disturbance to my vision. Oh well, a good night sleep would sort that out.

We watched the TV show "Embarrassing Bodies" in bed and by "watch" I mean cower under the blankets while people showed their most intimate body issues on camera (I have never seen or heard of a Buried Penis before and hope to never again!). If you are not in the UK then you should YouTube the show, it is quite a "treat". Last week there was a woman who was putting a hosepipe up her bum and giving herself coffee enemas, who does that? Yikes!

I fell off to a lovely sleep shortly after ten and didn't wake up until seven. For a change I got a lovely nine full hours of slumber. You would think I would be on top of the world today, right? Wrong!

I have woken up this morning feeling awful. There is pressure in my head and my right eyeball feels like it is being squeezed from behind. I am so dizzy and feel nauseas. The numbness in my face is back along with tingling in my lips. My legs are heavy and full of iced water again. I also have the fog over my eyes and I am exhausted, as if I haven't rested for days.

I am really trying to not let this get me down today. I am sending the Universe a very important message today of "I have work to do and so I feel great". Hopefully the Universe will send me the ACTUAL feeling of "great" back to me. While I am at it I wonder if I sit and think of how wealthy I am, will I win the lottery? I think I need to chat to my friend Lisa and find out how this works.

I really do think that your frame of mind can determine what sort of day you have but it is really hard when you feel like crap to feel positive. I told Phil the other day that I don't think my symptoms bother me any more, that I am an observer of them but they will no longer make me sad. I said that maybe finally I had "let it go" and reached the acceptance stage of living with a chronic illness. Today I am not so sure, today I am feeling fed up that even though I had a great night sleep, I feel worse today than I did yesterday. Maybe my body is just rebelling because I gave it a good pasting with alcohol on Sunday but is that what is going to happen now? A good night = pay for it later? That sort of sucks to be honest.

I think I need to read some more of this book because although I haven't slipped completely back into the pity party today, I am sort of standing at the back door, holding a balloon and am tempted to go in. I simply do not have time for it today however as I have websites to work on. I have to keep the positive energy flowing.

So enough about me, how are YOU?

London Baby

Good Morning Bleeps.

What a beautiful, sunny day. There is something about the sunshine, it just makes me feel happy. I am sitting here with a raging hangover but I don't care and I worked hard to achieve it.

We got up bright and early yesterday morning because Phil was schedule to do a 10K race in Ashford. I sat in the sun and waited for him to cross the finish line, which he did in 54 minutes. While we were waiting for it to start I couldn't help but feel a bit bummed out as the runners started pouring in. I miss running but was sat there with my legs killing me so I know that for now it isn't an option for me. I do need to do something though so I might go back to swimming, that way I wont over-heat and also it will be more of a low impact exercise. The sun is another reminder that the better weather is on it's way. Better weather = bikini, yikes! I need to kick this half a stone off that I have gained since getting sick and the way I see it is that I have two choices; sit on my arse, do nothing and feel like crap about myself or re-work my attitude towards what is a good workout.

I used to get off on that feeling of adrenaline that runs through your body after a gruelling run. If I wasn't killing myself I wasn't working hard enough. I need to readjust that way of thinking because doing something, ANYTHING, is better than nothing right?

Approaching the finish line

Anyway, I don't think I will ever get over the feeling of pride that I get when Phil approaches the finishing line of a race. He always puts a smile on my face.

We came home, got ready, packed and jumped on the high speed train to London. What Phil didn't know is that I had arranged for some good friends of his to join us in the bar for a drink before we were going to dinner. We went down for a drink quite early and Phil started to get itchy feet, wanting to go off somewhere else so in the end I had to tell him just to cool his jets and let him know his friends were coming.

We were joined by Stefan, Tara and Andre and managed to polish off three bottles of champagne between us before we had to catch a cab to Knightsbridge. It was such a laugh and as much as we were looking forward to our meal at Heston Blumenthals restaurant, we didn't want to leave. Those couple of hours flew by! It was so nice to just let our hair down, relax and catch up.

Me and Phil

Me & Tara

Stefan, Phil & Andre

We arrived at Heston's restaurant at the Mandarin Oriental Hotel in plenty of time so we were shown the bar and had yet another glass of wine. By the time we got to the table we were a little bit tipsy but it was lovely. We were sat right by the window overlooking Hyde Park. The menu was very adventurous and it was really hard to chose because it all sounded lovely. Phil had the meat fruit to start, which was a chicken liver parfait stuffed inside a mandarin orange and served with grilled bread.

I had the Salamugundy, which was Chicken oysters, salsify, marrow bone & horseradish cream. I was a bit wary of the marrow bone part but thought what the hell and went for it. I was glad I did because it was amazing. Very rich but the texture and flavours worked beautifully together.

For our main courses, Phil had chicken with lettuce and I had the fillet steak (which again had a bone marrow butter on top). This came with Heston's famous triple cooked chips, which I have to be honest I didn't really care for. I am sure I am in the minority on this one but they looked like a chip (fry), tasted like a crisp (chip) and felt just really over-done and not at all fluffy inside like I think a good chip (fry) should. 


The fillet steak was literally the best I have ever had, it just melted in my mouth. I could only manage half of it because it was huge and I was stuffed. When we placed our order we had been told about a "special" dessert that takes half an hour to cook so if we wanted it we needed to order it in advance. Of course at that point I was starving so I went for it. After leaving half of my steak I was regretting that decision but I had faith in my man that he wouldn't let me down and would help me eat it. I wasn't wrong!

Fillet Steak

Chicken cooked with Lettuce

Tipsy Cake

We were going to have a chocolate martini nightcap at the hotel but we didn't make it, we ended up crashing out. Today I am totally hungover and my body is tingling like crazy but I loved every second of it. Can't wait for my next naughty night out on the town with my man. It has been too long!

So enough about me, how are YOU?

McBrilliant

Good Morning Bleeps.

If you caught yesterday's blog you will know that I went to see McFly in concert with two of my girls, it was brilliant. There is something quite special about seeing a band you love playing in a small venue. Folkestone's Lees Cliff Hall only hold up to 1000 people so this was very "up close and personal".

Maddy and her friend went ahead to line up early so they would be near the front. Kassidy and I got there ten minutes before the doors opened and as we walked toward the venue one of Maddy's friends spotted us and called my name. I went over and gave Maddy and her friends a hug, the excitement in the air was electric. All of a sudden the doors open and we were swept up in the wave of kids surging forward and sort of just went with it. On some level I was feeling a tiny bit guilty for pushing in because it is so not me (anyone that knows me will tell you that I hate people who cut in line) BUT I thought "what the hell" and just went with it. I didn't have the balls to look behind me though, the daggers I could feel in the back of my head were punishment enough.

Me and my lovely girls <3

As we got inside I handed my ticket to possibly the most unattractive security man I have ever seen. He took my ticket and said "wow, if I knew you were coming I would have combed my hair". I did have a chuckle but it's hardly a compliment is it?!

We went into the venue and were right up the front, brilliant. Before long it started to fill up and we were quickly surrounded by a mass of teenage girls. Kassidy, my 18 year old kept saying "Are you OK Mum?  are you sure? Your aren't too hot are you? Are you OK?". She was a proper Mother Hen clucking around me, I know she was worried because she knows I can't take the heat these days but I reassured her that I was fine. 

Maddy in the crowd.

The opening acts came on (there were two) and the crowd surged forward. I was being pushed from behind so I just pushed back. You know, teenagers have no respect for personal space ha ha!

Before long I was baking. I could feel myself getting a bit light-headed but no way was I going to a) admit it to Kassidy b) admit it to myself or c) lose my great spot.  Security started to hand plastic cups of water to the crowd and one of Maddy's friends grabbed on and handed it back to me. I was being taken care of!

Eventually the lights went out, the music started and the crowd went wild. McFly were on stage. I felt like I was 18 again, screaming, dancing and as Maddy would say "getting down with the kids". I lasted three whole songs and then I started to have a mental argument with myself.

Danny

Karen: You are getting too hot.

Karen: No, I'm OK. Keep going.

Karen: Nope, the room is spinning, you are going to pass out.

Karen: Oh stop nagging, I am fine. I can handle this.

Karen: No you bloody can't, get out of this crowd before you hit the deck and freak out your kids.

Karen: *sigh* Oh, OK then. Where is the bar?

I looked over at Kassidy and she instantly knew that I needed to get out of there. We struggled through the crowd and into the bar for bottles of water. The cool air hit me and it was like heaven.

Dougie

We watched the rest of the concert from the side but since it is such a small venue, the view was still amazing. McFly were just brilliant and for a few hours the black floaters were replaced with stars in my eyes. 

Today I am completely knackered. My legs are aching and even though I had a great night sleep I am exhausted but it was totally worth it. McFly ROCKED!

My apologies for photo quality, all taken on a mobile phone.

So enough about me, how are YOU?

Five Colours In Her Hair (actually, just one!)

Good Morning Bleeps.

Happy hump day, all downhill now until the weekend. I am celebrating this special day by going to see McFly in concert with two of my girls tonight.

My fifteen year old (Maddy)  is going ahead with her friend because they want to do that teenage thing of lining up for hours before to get near the front. Me on the other hand, well, I will follow with my eighteen year old daughter (Kassidy) just before the doors open. Luckily it is being held at a very small venue just up the road (literally a five minute drive) that usually hosts smaller bands, tribute bands and comedians so the fact that someone like McFly is coming to town is pretty exciting.



I will stay near the back, away from the screaming teenagers just to be safe because my eyes are a bit squiffy today (black floaters a-plenty) and I am a bit dizzy. I am sure I will be fine when I get there as long as I don't get too hot. There is a bar upstairs so if I get too overwhelmed I will escape up there.

Maddy and Kassidy have been planning their outfits whereas I am more concerned about my roots so I decided today to put a hair dye on my head. It is one of those foam ones that they keep advertising as "easy and no drip". Yeah right, I was covered in the bloody stuff. Seriously, I thought it would be a good idea to do it in my undies since I usually ruin towels or clothes and now I look like a bloody zebra, covered in black stains. What? I hear you say! You are not a natural brunette? Well of course I am (ha!) but I do get the occasional (tons) of greys lately and no way in hell is that happening! I don't DO grey roots and the darker the hair, the more they show.

It cracks me up to think of the advert on the telly where the oh-so-glam chick has a foamy mousse in her hand, applies in with one swift swoop and sits there looking gorgeous before she shakes out her long mane of hair. Not me! I had it splattered down my back (can't reach it) and the pump action bottle was so hard to use (or maybe it is just the weakness in my hands at the moment) so I had to rest the bottle on my leg to puuuuuuuuush the nozzle down. As a result I ended up with black dye rings (like a coffee cup rings) all over my legs, not a good look.

So I rinsed it off and as well as the dye coming off, half my bloody hair came out too. Starting to really worry about my hair loss again. It did this a couple of years ago but seemed to slow down, now it is back to coming out in handfuls again. Stress maybe? Can MS cause hair loss (without drugs, I know some meds have that as a side effect).

To add insult to injury I still have some little grey hairs around the front. I thought about plucking them out but then remembered what my favourite Sex in the City character (Samantha) said about for every one hair you pluck out, six more come to it's funeral. Cant risk it.

So enough about me, how are YOU?

Let Light Shine Through

Good Morning Bleeps.

What a GLORIOUS day. I am such a great mood today. As I look outside I am looking at a cloudy sky but in my heart the sun is shining.

Why this wonderful mood you ask? It is because I am blessed with the most amazing people in my life. I remember writing (on one of my bad MS days) that I must have done something bad in a previous life to be suffering like I was but you know what? I take that back. Without this illness I would never have started this blog and as a result come into contact with the most amazing people.

Yesterday started out very well, my symptoms were almost non-existent, the sun was shining and I had some energy for a change. I was working happily way, published my blog and then all hell let loose. I guess some people recognised themselves in what I wrote and then posted very nasty accusations about me on a friend's wall (after she shared my blog on her Facebook timeline). I was accused of vile and disgusting things, all lies but boy did it hurt. I made what was written about me public on my own wall in case anybody else had heard these lies and had considered any of them to be true. The downside to "support" groups is that you can end up with mutual friends. I needed to make it clear that these were the rantings of a very unhappy individual and that there was no truth in them. That is all I will say about that part of the story as evil can only live if you feed it and this slanderous lie was evil.

I was thinking to myself then "enough", time to close off to the world, time to protect myself. I was done! As I got upset I started to get chest pains, dizzy, light-headed, my arms and legs started to tremble and I felt nauseas. Why bother blogging and sharing my life if it invites this in? Here I was feeling physically ill and yet I had done nothing wrong. It is true what they say about stress and MS not being a good mix because boy did my symptoms flare.

What happened next filled my heart with such love and reminded me WHY I do this. I got over 70 comments on the thread from my REAL friends offering me love and support, telling me how much my blog means to them, how much my friendship helps them on down days, how they didn't believe the lies and to hold my head high. Before long I was crying again but for a different reason. You know for every one awful person there are hundreds of GREAT people out there and I sure was remind of that yesterday.

I got Twitter messages from people telling me how they too had fallen victim to this sort of thing and had left Facebook as a result, how sad it that? I will be honest that I got friend requests yesterday that I thought about not accepting, how do you tell who are the wolves in sheep's clothing? How can you tell who is really there for you and on your side. I am the sort of person who just opens my life and my heart to people. That is quite a risk.

I told a family member that I am afraid to trust now, what if this happens again? She said "Not everyone will be kind but trust is earned. Thick skin is developed one layer at a time. Forge ahead and duck when those who throw barbs aim at you. That's the miracle of delete button! Have fun. You matter to a lot of people. Trust until the trust is broken. Then delete and move on."

So there you are, I am moving on. I am smiling and I feel so happy. Each message of support made my heart grow, I feel loved.

Last night my baby girl was in a school play, it was for her GCSE exams (for my international friends, this is an important "end of school life" exam here in England that is instrumental in helping you get into University/Colleges of your choice) and she was one of four girls in a scene that lasted 45 minutes. She played various characters and was SO amazingly brilliant, I couldn't stop smiling as I sat in the front row thinking to myself "wow, that is my baby up there". At 15 she is slowly turning into a beautiful young woman and I am so very proud of her. As she stood and delivered her monologue we made eye contact and my whole body was tingling, for once it wasn't MS, it was pure love and total pride. That girl of mine has massive talent, I see an Oscar in her future. It put my day into perspective, our loves ones, family and true friends are the people that really matter.

The same family member also reminded me of the Dr. Seuss quote, which is so true:

“Be who you are and say what you feel because those who mind don't matter and those who matter don't mind.”

I am surrounded by love and people who really DO care. I am blessed. All of this positive energy has made me feel so GREAT today.

So enough about me, how are YOU?

True Colours

Good Morning Bleeps.

What a glorious day it is today, the sun is shining here in the South East of England and that just makes me feel so much happier. Today has started well, I slept great and was showered, dressed and out of the door by eight.

Some of you have asked me why I didn't blog this weekend and so to you lovely people I would like to explain. When I started this blog I did it for me. I knew that I was going to be going through a lot of crap and I thought it would be a good idea for me to document my journey so that in a year, five years or even ten I would be able to look back and see how far I had come.

Obviously a lot of people could relate to what I was writing due to the number of messages I started to get, Facebook friend requests and blog page views (almost 18,000 in two months). I have always worn my heart on my sleeve, been open and honest. I don't do conflict (really, I can't deal with it) and probably care way too much what people think of me. I still have many friends that I have had since my school days, I confide in them and they share their problems with me too. A lot of people have written to me saying that they loved how honest I am in my writing but I don't see it that way, I am just being me. Why bother to blog if you are going to hide behind a mask and pretend to be something or somebody that you are not? I don't see the point in that at all.

I have met so many lovely people over the last couple of months, some that I know in my heart will be life-long friends. I have had visitors that have left comments on my blog that have made me cry because they are so lovely. I really did (still do most of the time) feel like I am doing something good here, if nothing more than letting others that may be going through similar stuff to see that they are not alone in their struggle.

I was also added to some MS support groups by people who had read what I was going through and all of a sudden a whole new side to Facebook opened up to me. I didn't even realise that there were such a thing as closed support groups. I only ever used Facebook to keep in touch with friends, family and to occasionally stalk the school bullies to see if they had become fat or ugly. Oh come on, don't judge, we've all done it!

I thought I would make new friends, get support and advice and even offer some virtual hugs back in return. One of these groups has been great for that but what I started to notice in some of them was an undercurrent of meanness. Like all of a sudden people wanted to "win" at having MS (which, by the way, is bloody ridiculous because nobody wins with this thing).

Arguments broke out over this treatment or that treatment. Name calling erupted over this diet or that diet. I stayed away from the conflicts but just witnessing it was getting me down. These groups were mostly "closed" groups where you were supposed to feel safe and supported but there was nothing safe feeling about some of them. Some people's masks were slipping and I decided I needed a break from it all, it was all too emotionally consuming.

I was sick of Karen with MS and Karen that feels like crap every day. I was sick of the negativity of some of the groups and so I decided to start my own group that was NOT to be about MS. I wanted somewhere I could go and have fun, share with other ladies (sorry boys, it was a ladies only deal), swap recipes and naughty jokes and just be Karen for a while, like an online "girls night out". I messaged a friend (she has MS) asking her if she wanted to join and she initially said no, she was sick of all the doom and gloom. I told her that I was too and that is why I wanted to make the group, an escape. I promised her fun, laughs and some funny pictures that are just a bit too saucy for my regular Facebook page. She was in!

I made it clear in the group description that this was NOT an MS group although lots of us had the illness. As a newbie to creating groups I didn't add any settings preventing other members from adding their friends and before long other people that I don't know were added to the group. Cool, the more the merrier right? Wrong!

Before long the dialogue started being more MS driven than not. Now don't get me wrong, I even mentioned it myself in there because let's face it, it is part of who were are and it will come up from time to time but it was slowly turning into something I didn't want, another MS group.

I had some private messages from friends who do NOT have MS who had said they didn't feel comfortable joining in as they didn't know what to say. This was the total opposite of what I wanted when I created this space. Since it was ME that created it I did feel that I should be able to lay down the guidelines.

I politely (really, it was polite) asked if we could NOT talk MS and boy was that like "can open, worms everywhere". People took offence, one woman left the group and then I was promptly talked about in another group. I wasn't saying I didn't want to talk about MS ever, in fact when one member finally got her diagnosis we talked about it and I told her I was happy she had finally been heard. I was there for her, I supported her and offered kind words. I just didn't want EVERY conversation to be about it and that what was happening. The backlash was out of control and really very hurtful. Geez ... had I woken up in 1986? Was this High School again??

One person wrote that it was their job to "educate the non MSers". Well, not in this bloody group love! My friends read my blog, they gain understanding through my regular page, this was not the place.

Is it so wrong to want to have somewhere that I can go and just be Karen? Karen who is in love with Phil, Karen who is a mother, Karen who likes wine, Karen who thinks Shermar Moore is a hottie (sorry Phil!), Karen who wants to go back to Tenerife NOW, Karen who thinks she can sing on the Karaoke, Karen who hates laundry and Karen who eats way too much junk food and then moans about gaining weight?  Is it wrong to want just have one little corner of the world where I am NOT Karen who is living with a chronic illness?

I didn't blog all weekend because quite frankly I felt like a wounded animal. Why should I? Why should I open up my feelings and my life if this is what happens when you do? I was accused of being "too sensitive" and maybe I am. Maybe this is the risk when you put yourself "out there". It's funny how some people say things like they "tell it like it is" and they don't care if people do or don't like it. Isnt it about HOW you say things? Like I said a few blogs ago, whatever happened to just being NICE?

One of my friends (non MSer) shared a really special and intimate thing in the group, something that may be considered controversial to some (not to me, I think it is awesome) and one of these members wrote "I'll keep my opinion to myself". Why write that? My friend was hurt and it was unnecessary. Why do people think it is OK to be so abbrasive just because it is via a keyboard and not face-to-face. If they are like this face-to-face then I wonder how many friends they have. I am guessing not many!

So I closed the group down and I left most of the MS groups that I had been added to. I don't need that in my life. I am dealing with feeling like crap, a slow medical system that keep messing me about and the actual stress of living with this invisible monster. I need to surround myself with good people and not people who will drag me down when I am already down enough.

It's funny because I was talking about this to someone and my 12 year old must have overheard the conversation because she asked me if I know these people. I said no, not in person and she said "so why did you add them on Facebook, you always tell me to not add people I don't know on Facebook because you don't know who they are really". Out of the mouths of babes!

I thought about closing down my Facebook, locking down the comments section of this page and even deleting my Twitter but then I thought about people that I have met via this (too many to mention but you know who you are) and decided just to hold my head high and carry on. I know I have a good heart, even if it is too soft at times. I feel pretty good about who I am as a person and it is time to brush off the "Mean Girls" and grow a thicker skin.

So enough about me, how are YOU?

Mood Swing Alert!

Good Morning Bleeps.

I am having a bad day. I wasn't going to blog because how many times can you write the same thing without your readers eyes glazing over?

I have woken up three nights in a row with such intense nausea. Really awful, the kind where your mouth is watering and you wish you could just throw up as it might make you feel better. Last night I reached across to the night stand, grabbed my bottle of water and just lay there holding on to it. I knew I needed to sip some of it but my arms were so heavy that I just lay there for ages with it in my hand, willing the awful sick feeling to go away.

This morning it is really bad, if I didn't know better I would be doing a pregnancy test (what was that loud crash I just heard? Phil fainting??!! haha). I just feel soooo sick. I am also dizzy as hell, my vision is funky and my body is tingling. I am so tired of this. I am so flipping BORED with feeling like rubbish every day. Sure I have some less crap days but they are still crappy. On a scale of one to total crap, today is a seven.

Then I feel guilty and give myself a bit of a mental slap around the face because the reality is that I am lucky to only feel like this. There are people out there that have so much more to deal with so who am I to complain? I can still walk, I can still drive (although some days it is a bit of a dodgy thing to do) and I am still able to live my life in an independent way.

I can intellectualise all of that but it is still tough when I feel sick, dizzy and in pain to remember that I am one of the lucky ones.

Oh sod it, who am I kidding? I am feeling sorry for myself. I am supposed to be going to see my good friend today who I haven't seen in weeks but I am stressed about driving just the short distance to her house because of how dizzy I am. I have to drive later anyway because I need to do the school run so not going out isn't an option as I think that child abandonment is still largely frowned upon.

I need a mental kick up the backside, yes it is a bad day but it sure as hell could be worse. I apologise for my language today but quite frankly I have toned it down compared to what I REALLY want to say.

So enough about me, how are YOU?

So this is usually the end right? You see "So enough about me ... " and you know I have said what I wanted to say. I bet you were secretly relieved because boy was I in a bad mood eh?

Then the doorbell rang and my whole day changed. How can I NOT blog about what just happened when once again, it seems that when I am having one of my really bad days an act of kindness makes me feel oh. so. much. better. To use the words used by my special second Mummy Joy, it is as if there are angels right here on earth keeping me sane, making this awful time easier to deal with.

I just received these most beautiful flowers with a box of chocolates from my lovely friends Dina, Azril and their gorgeous baby Salma. I met them as a photography client but we clicked and have become friends over the last couple of years, we were supposed to meet up in London for burgers but then I got sick and it has been postponed (but we will do it!).

You guys don't know how much this means to me, in fact, I am sitting here crying like a baby. I feel physically so rotten today and yet my heart is filled with such warmth. I am so touched, I am speechless and SO GRATEFUL. I love you and will hide the chocolates to stuff all by myself when my nausea passes.

To any of you reading this that live in or visit London then you MUST go and try one of their Chewy freshly baked puffs, they are delicious, simply to die for!

So (again) enough about me, how are YOU?

Pay It Forward

Good Morning Bleeps.

You may have noticed a lack of blog yesterday, I apologise for it but I was having a bad day. You will know when I am having a terrible day when I don't blog and am quiet on my favourite Social Networking sites. I was feeling very sorry for myself because I was awake on Tuesday night from about 2am with intense nausea and severe leg pain. They were burning and tingling with such intensity BUT worse than that was the feeling of throbbing heaviness, like growing pains times a million. I just lay there in the darkness, silent tears running down my face.

I sat in my bathrobe for most of the morning yesterday with chest pains, leg pain, more nausea and of course exhaustion. I was feeling seriously fed up and sorry for myself. At times I feel like this horrible invisible illness is changing who I am as a person and that worries me.

The past three years have been the happiest of my life. I escaped an emotionally abusive marriage, met my soul mate in Phil and have had some wonderful times. I have watched Phil complete a marathon in New York City with his boss (who between them raised over £10,000 for the Children with Leukaemia charity), had amazing holidays (both with and without the kids) in places such as Tenerife, Majorca, Greece, and Florida. Phil and I have had many boozy nights in London, seen shows, been to concerts (how much do I love Daughtry?), had luxury spa breaks and pretty much I have had more fun and excitement than I had in the previous ten years before we met.

I have done things I never thought I would (Karaoke) and have rediscovered my "fun" Karen. I got into running, changed my body and got into the best shape that I have ever been in my life. Everything came together and it was awesome. Then this happened.

The symptoms started gradually (numbness in my face that would come and go) until last year around September when the numbness came, stayed and invited loads of friends to join it. I was talking to a neighbour who has ME (so she gets it) and I told her that at times I feel like I am slowly sinking into a dark place, losing the fun me.

I feel resentful towards physical symptoms that I have no control over and I feel angry towards the Doctors who are taking their sweet time to help me. I am disappointed towards family members and people who I thought were friends who haven't even bothered to reach out and offer ANY words of comfort since diagnosis. Someone said to me that maybe they don't know what to say. Rubbish! Sending a little message of "how are you feeling" or "sorry you are going through this" takes five minutes and means the world.

I like to think that I am the sort of person who cares. When a friend's sister died of breast cancer I filled her freezer up with ready cooked meals that she could just throw in to the oven. When another friend's son got sick I helped run a campaign to raise awareness (even if it was just to get people to send positive thoughts and prayers). When Phil's Dad was in hospital I spent all morning in the kitchen before we went to visit baking cupcakes just for him. I donate (as much as I can) on people's charity pages be it for "Race for Life", "Movember" or another charity.

A business client attempted a challenge that included running from London, swimming the channel and then cycling to Paris. I jumped on it, promoted his cause, got people to donate to his charity and went out to support him during the run. I always send messages of support to people who I know are struggling in some way. I believe that showing people that you care when they need you is what helps them to get through it. I am not telling you this in a "look how great I am way (although I am pretty fantastic ha ha!) but just in a way to show you that I do put my money where my mouth is. I believe that when people need you, you step up and do the right thing.

Since getting sick I have been so touched by some people and equally disappointed by others. Sadly the "others" are the ones I would have expected to be there but something like an invisible illness is a great weeding tool. Let's give those people the attention they deserves shall we? None!

I have had some unexpected people reach out to me and that has really touched my heart. There have been many and I can't possibly fit everyone into one blog (this is already turning into a novel) but I just wanted to share a couple of recent things that have really meant a lot to me.

Phil's good friend in Denver (who I have never even met) sent me a Facebook message to tell me that she is doing a MS charity cycle of 150 miles. She wrote that she signed up with me in mind and that I will be in her heart while she punishes herself through the ride. Like I say, I haven't even met this lovely woman and that really choked me up. I have had messages through Facebook from work friends of Phil, they have offered words of support, made me chuckle, shared my blog with others and just simply been supportive. Phil's "Aunt" Jill has sent numerous Facebook messages, offered advice (she has a family member with MS) and has been just lovely.

Then yesterday happened and it gave me a whole new feeling of "wow, there really ARE great people in this world". Like I said at the beginning I was having a TERRIBLE day until just after lunch when these beautiful flowers arrived. I opened the card to see that they were from the company that Phil works for. It said that they had heard I was going through a hard time and that they were thinking of me. I was absolutely speechless and I am not ashamed to admit that I shed a tear.

The company that Phil works for (Ink Publishing) is a large one. It has offices all over the world and the fact that they did this just meant so much to me (and of course Phil). Their Facebook page is called HappINKness and part of their bio says "Ink is a happy place to work. Be it in Atlanta, London, New York or Singapore. This is part of our culture and we want to share some of our happiness with the rest of the world." They really did share their happiness with me yesterday, it completely changed my awful day into a wonderful one. I am so grateful and it just goes to show that just one act of kindness, be it a bouquet of flowers or a simple message, phone call or card can make such a difference in someone's day.

Today is a better day, I slept OK and have a lot more of a positive attitude. I have a pounding headache and my eyeball feels like it is being squeezed out of it's socket. My legs are hurting and the floaters in my eyes are plenty but today I don't mine. I am OK with it. "So what?!" girl is back. It might have something to do with the fact that the room in which I am sitting is filled with the lovely scent of these flowers.

Thank you once again, everyone at INK. Thank you all for reading and supporting my blog. Thank you for your lovely comments (I do read them all, even when I don't have time to answer). Thank you and good luck Lauren on your bike challenge. There are so many people that have been great but this is starting to be in danger of turning into a bit of a thank-a-thon so I will stop now.

I just feel so blessed, I feel lucky some days to have this MonSter because without it I wouldn't experience these wonderful acts of kindness or have met such wonderful new friends. It has shown me where to focus my attentions, which people really care and just how rich my life is. Pay it forward Bleeps, just reach out to one person today and show them you care, you will never know how much it will mean to them.

So enough about me, how are YOU?

The Weak Positive

Good Morning Bleeps.

I had an appointment with my GP yesterday and was quite proud of how strong I was in the meeting. I went in there with the voice of a Facebook friend who had said to remember that the Doctor works for ME and that I had to be strong. I told him I would "try" and he said "Not try, do it, you have this".

I thought to myself as I sat in the waiting room "you know what? I DO have this". My whole attitude shifted, I felt myself grow calm but strong. This is my life and my health, I have to be my own advocate.

As I sat there waiting to be called in by the Doctor I listened to the conversation between two elderly women who were also waiting. I tried so hard not to laugh out loud (yes, actually LOL) when one said to the other "you better come in with me in case the Doctor tries to touch me somewhere he shouldn't". Bless her, I wonder if she realised how loud she was talking? I looked around the room and could see other people's mouths twitching as they tried (like me) to not chuckle.

I went in and told the Doctor that I was there to get the results from my blood work, in particular the ANA test, which looks for the Rheumatoid Factor (and is one of the screenings for Lupus). He looked at the screen and said it was negative. I asked him for the actual number because I told him that the surgery had called me to tell me that the RF came back elevated. He pulled up the screen and said it came back at a level of 21. I looked at the screen myself, which clearly said that a negative result was less than 20.

I asked him what that means and he said that mine was a "weak positive" which apparently is the same as a negative. Huh??? Isn't that like getting a faint blue line on a pregnancy test and only being a "little bit pregnant"?

I explained to him that I am concerned about some of my symptoms being Lupus-like and with a result of 21 can I rule that out? He couldn't answer me, he just said to speak to my cardiologist and neurologist. So, I guess I just have to wait this one out some more but at least I have the number (for what good it is!!).

I have many symptoms that sound like Lupus (fatigue, aches & pains, Raynauds Syndrome, abdominal pain with nausea, a dodgy right kidney, palpitations, chest pains with shortness of breath as well as just feeling unwell) BUT I have the other symptoms that have led to my original MS diagnosis (via my brain MRI) such as numb limbs, a numb face, dizziness and vertigo, visual disturbances, black floaters in my eyes, ice cold sensations in my head, tingles and electrical storms in my entire body (as well at the fatigue, aches & pains that applies to both MS and Lupus). Confused? Yeah, me too!

The good thing is that at least this Doctor did say that if after seeing the specialists I don't get any definitive answers (I told him that I am not happy with my diagnosis being changed from MS back to Probable MS) that I could come back to him and we could decide where to go from there.

So if any of you have an knowledge or advice with that "weak positive = negative" thing please let me know so I can either scratch Lupus off my list or keep it in my top pocket as another avenue to explore if my Neurologist won't validate my original diagnosis and keeps me at Probable. I am not a "probable" type of chick, I am "yes" or "no" kind of girl. You would think that in this day and age of modern medicine it wouldn't be so bloody hard to get an answer.

So enough about me, how are YOU?

Going LUPY!

Good Morning Bleeps.

Is it really Monday again already? Ugh, who stole the weekend?

I had a crappy night sleep again last night, for some reason lately when I want to sleep my heart decides it wants to party and it literally wakes me up. Last night was quite scary because my heart was racing so fast that it felt like it was going to gallop right out of my chest. Yesterday was a "bad breathing" day too, I just couldn't get enough air in my lungs.

I know the other day I was trying to focus on my "so whats" but my "what ifs" came back to me yesterday - they always seem to be able to sneak back up on me no matter how hard I try to keep them at bay.

You see, since my "Mad Scientist" post I can't stop wondering about Lupus. I tick so many of the symptom boxes and some of them are more "Lupus like" than "MS like" (like the racing heart, high blood pressure, Raynauds Syndrome, abdominal pain with nausea and hair loss). I came across it when I researched other illnesses that could show up on a brain MRI and this is one of them.

A while back my GP ran a series of blood tests that were "normal procedure" when starting patients on the blood pressure tablets that I take. I got a call to say my Rheumatoid Factor came back elevated (as well as my cholesterol) and that I needed to have a telephone appointment with the GP. When the GP called she asked what I wanted and I replied that it wasn't ME that initiated the appointment, it was them based on my blood results. She looked through them (seemed a bit put out that she had called me) and said my results were all fine. I asked about the Rheumatoid Factor thing and the cholesterol but she said they were fine and nothing to worry about. WTF? Alright then!

Anyway that was months ago and before my flare up of symptoms and so I didn't really think much of it, other than the usual "My GP surgery is crap". Lately it has started to creep back into my mind. I know my Neurologist has run a lot of blood tests and one of them was the ANA test, which I think is one of the screenings for Lupus. If it is had come back dodgy then I am thinking that I would have heard about it. Or is it like trying to diagnose MS in that you can get normal blood tests but still have Lupus? I don;t know. I feel like I know the diagnosis procedure of MS like the back of my hand but this one is new.

Phil had a date with a football yesterday so I had a secret rendezvous with Google, I didn't want to do it in front of him because I don't want him to think I am neurotic (or a hypo) but yet I needed more information. One of the things that I came across was that when you get one autoimmune illness, it can trigger others. So of course my brain instantly went into "melt down" mode and I started to over think it all. What if I have both? What I have neither and it is something else? What if, what if (again).

I know I have a dodgy right kidney (have done for years) and Lupus attacks the internal organs. Having said that my kidney function blood tests came back OK and wouldn't something have shown up?

Lupus affects the joints and from my reading also the ligaments. Is this a possible reason that I had so many ligament related injuries when I would run? Is this why at night my knees feel hot and throb?

As you can see, I am going a bit crazy here. It is the not knowing, I can't stand it. I have just made an appointment with the GP (a different one) and I am just going to ask him for my blood results so that I have the information. I don't expect anything else, just the information at this stage. That way, when I finally go back to my Neuro in April (yes, two months after my additional tests were done) if he keeps my diagnosis at probable MS then I will have another avenue to explore.

It seems to me that you have to be your own advocate with your health. The idea that you get sick, Doctors CARE and help you to figure it out is a bit of a myth from what I have experienced so far. Having said that, my cardiologist was very understanding and I DID feel concern from him. The irony is not lost on me, a heart specialist that really does have a heart! I am sure there are many great GP's out there that do give a damn but so far this has not been my experience.

Wish me luck bleeps, I am going to try to keep my calm and have a direct, mature, emotionless conversation with a GP this afternoon. For someone that is intimidated by Doctors (because they make me feel like a whack job) this will be a challenge.

So enough about me, how are YOU?

Silly Sunday

Good Morning Bleeps.

How are you on this rainy Sunday morning (well, at least it is here in the SE of England)? I am having a "symptoms on speed" day so far (crazy tingles, leg and face numb and I can't breathe, which is making me feel light-headed and more than a little panicky) but I am NOT going to bore you with that today. I will chalk it up to a crappy day, keep smiling and carry on.

I have decided to chill out (after shopping), watch TV and cook a nice roast later. Can't beat that on a lazy Sunday so sod the diet today. To do this however I will first have to battle that place where mothers take their children to have tantrums - yes, the supermarket. I hate grocery shopping but the cupboards are bare and so I have no choice.

I wasn't even going to blog today but I know Clifford is sitting out there waiting (ha ha) and so these are for you my friend.

My Sunday Sillies - some might be offensive or politically incorrect so if you have had a sense of humour transplant or if you are of a sensitive nature then click off now.

Hope they made you smile.

So enough about me, how are YOU?