How Many Spoons Do You Have Today?

Good Morning Bleeps.

It is freezing here in the South East of England today. I am snuggled in my fluffy white robe on the sofa (not like me, is it?) and I just can't warm up. It's times like this I wish I had some thermals. I have woken up with "heavy as a hippo" legs again today. Actually I had them in the middle of the night too, I lay there in bed with legs so heavy that they felt like they would go through the mattress. Those invisible aliens sitting on me again, cheeky gits!

Actually what woke me up in the middle of the night was the fact that the bedroom was like the Antarctic.  You see my sister, Diane, told me about a Dr. Oz who was on a US morning talk show speaking about how to help insomnia. One of the tips was to have the bedroom cold and so I decided to open all of the windows. The thing is, it dropped below freezing and since we overlook the sea it got bitterly cold in the bedroom. Not even snuggling under the duvet was enough to keep warm but it was too cold outside the covers that I couldn't face getting out of bed to close the windows (come on, most us have been there, don't judge). It is safe to say I wasn't very popular with Phil, in fact his exact words this morning were something along the lines of "It's bloody freezing in here, I hate you". A bit harsh, ha ha!

So I am sitting here with my second cup of coffee of the morning trying to warm up and also trying to ignore my dizzy head and left eye pain. After my freaky episode last week of going blind I get nervous when my eye starts to go funky now. I really hope that was a one off but every time it starts to feel weird, I get nervous.

Anyway enough about what ails me today, I wanted to share something with you that I read yesterday. One of the most useful websites that I have found since being diagnosed (well, actually it helped me to recognise some symptoms before my diagnosis) is the MSRC (Multiple Sclerosis Resource Centre). I follow them on Twitter and Facebook (blimey, I sound like a stalker now) and yesterday they Tweeted a link to a story called The Spoon Theory. I decided to check it out.

The Spoon Theory, written by Christine Miserandino, is a great way to explain to someone what it is like living with an invisible illness. It is written so beautifully and to summarise, Christine talks about going out to dinner with a friend who asks what it is like having Lupus, another chronic illness. She explains it to her friend by having her collect all the spoons on the table. Each spoon represents a unit of energy that people with a chronic illness start the day with. She then goes on to talk through a typical day and has her friend hand over a spoon for each task, from getting out of bed to choosing what to wear. By the end of the hypothetical day she is left with only one spoon but has yet to eat. If she uses that spoon to cook dinner she doesn't have a spoon left to wash dishes or do anything else that evening and if she uses it to go out to eat she might not have a spoon left to get home.

I thought it was a lovely way to try to explain it to someone who doesn't have to think about what they can or can't do on a day-to-day basis. I am sure a lot of MSers will already be familiar with it but if not check it out, it really hit home for me.

This morning I don't have as many spoons as I would like but I am feeling quite positive. Sure, I could feel better physically but I could also feel worse (hey Universe, that wasn't a challenge). I was supposed to see a friend today but had to cancel as I simply don't have enough spoons. She also has a chronic illness and so she totally understood, which is lovely because sometimes you feel like you are making excuses when you have to cancel plans. It is nice to know she doesn't think that and that she really "gets" it although it sucks that she gets it because I hate that she struggles with her illness (Sjogren Syndrome).

Before I leave you today I just wanted to thank a reader called Ems, who made my day with her lovely comment yesterday.  She wrote that "It is so great to hear someone else express so well how MS feels on a day-to-day basis. Although you think you are being negative you are actually being a real help to people like me who need to know others are going through the same things." Thank you Ems, that comment actually brought tears to my eyes.

Sometimes I sit here blogging away and thinking to myself "Bloody hell Karen, you sound like a miserable cow again" and so it is nice to know that sometimes people can relate, it means a lot!

So enough about me, how are YOU?

Speak No Evil

Good Morning Bleeps.

Monday again, already? Where do the weekends go? Yesterday, as you may have read, I woke up feeling squiffy. My face was numb and my left arm had been taken over by aliens who were weighing it down and zapping it with electric currents, pins and needles. I decided to ignore it and just enjoy the day as much as possible.

I have mentioned that I am conscious of not talking about how I am feeling all of the time, that I am worried my family will get fed up with hearing it. The response I got from this was very supportive with comments (on Facebook) such as "I know the feeling of not wanting to talk about how you're feeling or wanting to harass others with it, but I do think it's the best thing you can do for your mental health. Anyone that truly loves you will understand that you need to vent and will deal with their own frustrations."

My sister also commented that "the people that love you will be here to support you and want you to vent to them. This is our journey together. You are never alone. Love you" (love you too sis). These comments and the support I have had from friends and family mean so much to me. I am not sure how other MSers feel about this? How do they balance the need to share and offload with not being a burden to their family and friends? Without making people want to say "we get it, now shut the heck up"?

Lately there have been times that I have mentioned not feeling well to the response of a blank stare, no response or a bog standard reply of "that's not good". At that point I feel like a jerk and slightly embarrassed and immediately wish I hadn't said anything. I don't blame anyone for this, how bloody boring must I sound and how many times do I have to let people know how tired I am or how much part a, b or c of my body is tingling, numb, hurting or heavy? What do I expect them to say? Do?

The reality is as much as feeling like this sucks, I have so much to be grateful for. I am in a happy relationship with a lovely man and my children are healthy and happy. I have a wonderful family and I have caring friends (some great new ones that I have met as a result of this invisible monster). We have a roof over our heads and food in the cupboard. I work for myself and I play by my own rules, I am blessed and I know this. I like to think of myself as a glass half full person and I guess this is why being stuck in this rut of negativity (and I do feel a bit stuck) isn't sitting well with me. I am not happy with who I am at the moment and I resent my body and the way I feel most days.

Take yesterday for example, even though I felt awful when I woke up, I was determined that I was just going to get on with it. I drove to collect my daughter from a friend's house, went to the store and bought food, came home and made bacon sandwiches and then went on to peel a billion vegetables (ok, maybe only a million) and cooked a roast.

Phil left at about four to take his daugher home (about 4.5 hour round trip) and I flaked on the sofa watching Friends re-runs with two of my girls. It got to about six o'clock and I completely hit a wall. I felt like I had been hit by a truck, I was exhausted.

I wondered if maybe I was tired because I had been sitting still too long. You hear all of the time people saying things like "I am so tired and yet I haven't done anything" and so I decided to do some housework to see if I could "perk" myself up. I cleaned the kitchen, vacuumed the carpets and basically made the house sparkly clean (with candles lit and everything). After an hour or so of playing Mrs Mopp I sat back down with a glass of wine and all of a sudden my legs started to burn like you wouldn't believe. They felt heavy as though filled with wet sand and the ants were back crawling up and down under my skin. I felt so nauseas that I thought I was going to throw up and I was just exhausted. I wanted to cry.

My body was letting me know that I had overdone it. Just regular household stuff is now over-doing it? That sucks. I vented on one of my MS support group message boards about how I was feeling, hoping that I would "get it all out" before Phil came home. Of course I did tell him how I was feeling but then felt pathetic and weak for not being able to keep it to myself.

Later on, as we cuddled up in bed, Phil commented that I was being a fidget and asked was I not comfortable? I told him I was fine but I wasn't fine at all. My arms were dead weights and my fingers were throbbing with intense tingles, like they each had an electrode attached to them and were being zapped in time with my pulse. I just didn't want to bore him (or myself) with saying it out loud.

Today my legs are KILLING me. Did you ever get "growing pains" as a kid? Imagine that times ten. They are throbbing and feel heavy. I have a lot to do today but luckily it is graphic design / brochure work so I don't have to get off the couch too much until the school run later (oh, and take a shower in there somewhere too).

So today I am venting about how I am feeling here (you can click off, my family can't) but I really am going to try to not burden my loved ones too much. Hopefully by the time they all get home I will be feeling better and so when I tell them that I am fine, I will mean it!

So enough about me, how are YOU?

A Rude Awakening

Good Morning Bleeps.

I hope you all are having a lovely Sunday (or indeed whatever day it is that you are reading this). I woke up this morning from a nightmare. Was I being chased by a mass murderer of falling off a cliff? Nope, I was being told that I was no longer allowed to see my Neurologist because I had missed an appointment. Doesn't sound like much of a nightmare but it was really stressful as I was crying and begging, trying to explain that I need help (and treatment) and they can't just send me away.

I know where this is stemming from. When I saw my Neuro on Jan 12th he told me that although the MRI showed lesions on my brain, he wanted to send me for a lumbar puncture as well as another MRI on my spine and an EVP test. He called the LP unit as I sat in front of him and was advised that there were only fifteen people on the waiting list so I should be seen in two to three weeks.

I have to admit that I am really nervous about this test. I know people have told me that it really isn't bad and that it isn't the scary experience that many would have you believe but I am the woman who had three of my four babies with no drugs. No epidural for me and not because I am some sort of wonder woman (although I bet I would look great in the costume) but because I am scared stiff of the idea of a needle anywhere near my spine. Yikes!

I did have my fourth little Angel (don't care that she is twelve now, she is still my little 5lb newborn in my eyes) by caesarean so I had to have the spinal block then but all cared about was the health of my baby, my own fear didn't come into it.

Anyway, I have had letters for all of my tests (MRI, EVP, Cardio Stress Test, Heart Monitor) and yet the one that I expected first hasn't arrived. In my dream the hospital called me to say that because I had pulled a "no show" for the lumbar puncture test that they had removed me from the Neuro's list. I was trying to explain to them that I never got the appointment. I was crying and pleading but the receptionist was a complete cow-bag and refused to believe me.

I woke up with the feeling of frustration and despair. It would seem that my MS is following me into my dreams. I think that as much as I am not in a hurry to have this done, I will phone my Neuro's secretary tomorrow and just make sure there hasn't been a blip in the system.

Today my face is driving me crazy with the numbness and my left arm feels heavy and weird, like it isn't part of my body. I am putting on a brave face and am about to make bacon sandwiches for breakfast. The family don't need to hear "yet again" how I am feeling. I am sure they must be getting as fed up of hearing it as I am of saying it.

So enough about me, how are YOU?

Run Forest, Run!

Good Morning Bleeps.

For those of you that knew me in school I am sure that you must find it quite amusing that I like to run. You see it was usually me that came in last in cross country at school. I remember one time it was foggy and I actually got lost and crossed the "finish line" over an hour later than my classmates. The teacher was less than impressed.

In my twenties I lived in Florida and discovered a passion for fitness. I trained hard and finally qualified as a fitness instructor. I spent my days on the beach topping up my tan and my evenings in the gym teaching step aerobics and providing personal training. Life was good.

I moved back to England in my mid-twenties (not through choice) and fell off the exercise wagon. I had my little spurts of "I'm going to get fit again" but I basically got really lazy.

Fast forward a few (ahem, ok fourteen) years and I met Phil. He told me how he was training for his first marathon, I was impressed! I was inspired by this and went out and got myself a pair of running shoes. The first time I hit the pavement was a little bit embarrassing because I walked more than I ran but I was determined to continue. I built up my fitness gradually and before long I was a runner. Not a fast runner but a runner none the less.

New York Marathon, November 2009

I went to New York with Phil in the November and watched him with complete admiration as he crossed the finish line. I almost burst with pride, seeing him reach the goal that he had trained so hard for. He didn't let his knee injury stop him, he was determined and it paid off. I sat in the bleachers and when I got my first glimpse of him I couldn't stop smiling. The atmosphere was amazing and I decided that next year it would be me crossing that line, I wanted to train hard and achieve something as amazing as running a marathon.

I started to train and got my entry place but I was plagued with injury. During the BUPA 10K run in London I pulled my calf muscle at the 3K marker. Phil said we should stop because he could see I was in pain but I was determined to finish (I wanted that medal) and so I finally completed the run (by limping) in just over an hour. I was disappointed with my time but proud of myself that I hadn't given in.

I decided that if I was going to train for a marathon then I probably needed some professional help. I got myself a personal trainer but all he did was tell me how running was bad for me, how I shouldn't do it etc. It was not the kind of "encouragement" that I needed when I already had voices in my head full of negativity after my 10K "disaster". I stopped working with him and found myself a new PT. She was great because she was a runner herself. She told me that as my PT she should advise me to not train for the marathon (by this point I had pulled my calf and my hamstring muscle) but as a fellow runner she understood my need to see it through.

BUPA 10K, London 2010

It would seem that every time I recovered from one injury, I got another and so I decided to go for my longest run yet and it was going to be my deciding run. If I reached my goal of 13 miles (a half marathon) then I would go for it and continue to train. At around 8 miles I pulled my groin, fate had decided.

I always remember sitting in the sauna at the gym with Phil and he said "maybe you should just accept that perhaps you are not a runner". I think the look I gave him must have shown that I was trying to not kill him and he quickly rephrased his sentence to how he actually meant it and that was as much as I wanted to run a marathon and my head was in the right place, my body was telling me no.

From that point I just used running as a way to keep fit, staying around 6K on the treadmill and mixing it up with weights and other equipment.

Since becoming ill in November I haven't done any exercise at all. I live in a four story town house (by the sea, very lovely) and just walking up and down the stairs exhausts me these days. I miss going to the gym and continue to pay my membership in the hopes that I will get my energy back and will be able to go back and pound the treadmill. I miss the rush of endorphins that you get after a kick-butt session in the gym. I miss the gentle ache in my muscles that tell me I worked them hard, completely different from the ache I feel in my body these days.

I hate that my life seems to be on hold or is at least dependent on how I feel from day-to-day. I want my life back. I want control back. I resent this illness that seems to change from day to day, hour to hour. I resent that there isn't a magic pill to make it go away. Growing up we are taught that when we are sick, we go to the doctor, find out what is wrong and then they make you better. I want to be better. Where is my prescription?

I WILL get back to the gym, I just need to listen to my body and right now my body is saying "get back on the sofa woman", I better listen!

So enough about me, how are YOU?

TGIF

Good morning Bleeps.

When I started this blog it was to just document and talk about my MS journey but it has become much more than just about my illness, it has become a way for me to talk about my life as a whole. I hope that it gives you more insight into this awful disease and at the same time you are enjoying sharing my life as I am enjoying sharing it with you.


It has been a very sad week with the loss of Ronny and then I got the sad news that a lovely lady I know lost her baby yesterday. Why is the world so cruel at times?

I feel so sad for her and her husband and once again I am reminded by the fragile nature of life. I ask that you send a prayer (or whatever you believe in) out into the universe to help heal their broken hearts. I feel so very sorry for them.

This week has been a bad MS week too, what with going blind and feeling terrible most of the time but today I have woken up with minimal symptoms (just a numb face at the moment), so I am grateful for this while it lasts.

I have had a lot of grief from my ex husband too this week, which has been very stressful. As we MSers know, stress is not good for symptoms. I sadly can't just wipe him out of my life as we share children but wouldn't it be nice if it was that easy? The hardest thing for me as a mother is seeing how his controlling behaviour makes my daughter cry. Sadly there is no reasoning with him and I feel my symptoms getting worse as the abusive text messages escalate, so I have to just stop responding and trying to reason with him for the sake of my health. It is frustrating and I am at a loss how to handle the situation.

As this week draws to a close, I want to thank you for reading my blog, which hit over 5200 views yesterday. I am quite overwhelmed by the love and support from both MSers and also people who know someone with MS who have commented that the blog has helped them in some way, even if by just knowing they are not alone. I am happy and feel honoured to have you along with me for the ride.

One lady wrote that my blog "helped her to understand what her Dad goes through". I am truly, deeply touched when I read things like that. Having MS sucks at the very highest level but it has also introduced me to some lovely new friends and for that I am grateful. I hope you all have a great weekend with minimal (or no) symptoms for my fellow MSers, surrounded by people that you love.

So enough about me, how are YOU?

The Kaleidoscope

Morning Bleeps.

If you caught yesterday's blog you will be aware that I was already struggling with fatigue (and a sprinkling of self pity). I had work to do but yet struggled to get off the couch and into the shower before Noon, it was definitely a bad day.

When I asked the Universe if the day could get worse, I don't think it realised that it was a rhetorical question and it decided to answer with a resounding YES!

I have had visual disturbances for a few years now. I  have been to get my eyes checked and explained to the optician what is going on but my eye tests have always been ok. The only thing that my last one showed was that I had Diplopia, caused by impaired function of the extraocular muscles. This basically means that whilst both of my eyes are still functional they struggle to converge to target the desired object. Basically, lazy muscles resulting in blurred or double vision. From my research I understand that it can be an early symptom of MS without people realising it.

Phil sometimes tells me off because I don't wear the glasses that the Optician prescribed but you see, they don't really help and to be honest the pressure on the bridge of my nose (even though they are super light) gives me a bit of a headache. I explained this to him (again) the other day but got a reply of "yes but they make you look like a sexy secretary". Now I see why he nags, oh, and no secretary for him at his office in the future unless vetted for an appropriate amount of ugly and non-sexy by me! Ha!

Another problem I get with my eyes is pain. Mainly my left eye, it feels like someone is literally squeezing my eyeball from behind although I get some light relief if I push back on it (sounds gross but it does help).

This has been it as far as visual disturbance up to this point. Sometimes painful, sometimes disconcerting but never debilitating. Until Yesterday, thanks Universe!

I was on my laptop when I realised that as I was typing words, I was only able to see some of the letters from each word. Literally my sentences were looking like this: w y the he k am I l  ing le te s? (why the heck am I losing letters?)

I squeezed my eyes shut, shook my head and when I opened them expected for all the letters to be back again. Nope. Try again. No, sight still squiffy and messed up.

OK, deep breath, don't panic.

Then slowly but surely the most peculiar thing started to happen. I will try to explain it in the best way I can but since I am still trying to make sense of it myself I might struggle. Do you remember playing with those kaleidoscope toys as a child? Where you look down the tube and twist the end and all the coloured beads would turn and change shape? Now imagine there was no colour but instead really bright, white lights spinning really fast around the perimeter of your vision. That is what was happening to me.

I could sort of see through the middle of it but not enough to able to function. The short video below is the closest thing I can find to almost describe what was happening, although there were no dark (black) colours, it was just all bright, white light.



After a while I lost the plot and called Phil in floods of tears, asking him to pick the girls up from school as there was no way I could drive. I can admit with no shame that I was panicking. I know that visual disturbances are all part of MS but this was the first time that I was having a symptom that was stopping me in my tracks. Phil comforted me over the phone, told me to close the curtains, shut my eyes and try to calm down. I was sobbing "but I can't see". He reasurred me "it will be ok, just try to relax and I will be home soon".

I took a deep breath, closed the curtain and lay down in the darkness willing for it to go away. I called my sister crying and feel terrible that I made her cry too. I feel bad about that as she is dealing with the loss of a very close loved-one and doesn't need psycho-sister freaking out down the phone. Sorry sis!

It didn't last very long thankfully and my vision slowly returned leaving in it's wake a headache and usual throbbing of my left eye but nothing I couldn't handle.

I am hoping that it was a one off experience as it was scary as hell. Honestly, I take most things on the chin (I might moan or complain as we all know by now) but this had me once again questioning why my body is rebelling in this way. What ELSE was happening in my brain yesterday? Was it a new lesion happening or just one of the old ones "acting out"?

I feel like my body is a school and my symptoms are the students. It seems that just when I think I have called the register (role call) on all my symptoms and they appear to be present and correct, a new kid joins the class. Well thanks body but this class is FULL. No more symptoms allowed thank you very much. Hopefully the eyeball kaleidoscope was just an "exchange student" and has gone back to wherever it came from (for good).

So enough about me, how are YOU?

Bleeping Fatigue

Morning Bleeps. Bleeps? Peeps that blog, like it?

If you have come here today hoping to be lifted up with a silly anecdote or embarrassing story then sadly I am letting you down because I am feeling totally hacked off.

I am so tired and yet I have slept through the night four nights in a row, a minor miracle for this insomniac. I should be refreshed, with a spring in my step but it would seem that my "get up and go" got up and went. What is left behind is someone that resembles a hot mess in a bathrobe, sitting on the sofa trying to build up enough oomph to shower ... again.  This is getting OLD!

I have some design work to do today, which is good as business sucks right now. I love running my own business and being able to work from home but the downside right now is that the economy has hit hard. The first thing people seem to cut back on is advertising, brochures and websites (I get that rent needs to be paid but you also have to advertise and keep trying to get business people!) and so it makes it so hard to survive right now. The end result is a seriously overdrawn bank account and no apparent light at the end of the tunnel.

The problem is that I literally do not have the energy to be as pro-active as I need to be. It is making me nervous because the reality is that I need to figure out how I balance feeling like crap every day with getting new clients and keeping my business afloat. How do people with MS run marathons when I don't have the energy to run to the front door when the postman comes?

Thankfully I have my loyal clients who are amazing and are totally supportive and I appreciate them so much. It isn't working with existing clients that I am struggling with, it is trying to get "out there" and gain new accounts that I can't handle right now. I have no "fight" in me and it is a competitive market, I need to fight for new clients.

I'd like to digress here for a second to tell you something that happened with a client yesterday. This lovely client sent me an email asking if I got her web updates done from the day before. I replied that I did it right away when she emailed me (I'm good like that ha ha), had she refreshed her computer? I felt really bad when she replied that she had been expecting my usual "all done" email. Bloody cognitive issues I thought to myself, I was sure I had emailed her. I apologised for my brain fog.

Luckily she knows about my MS and she was totally understanding, as she always is. About an hour later I was looking through my sent emails looking for something else when I came across the email that sure enough, I had sent the day before. I forwarded it to her, saying that I thought I was going mad but relieved to know I hadn't imagined sending the email. She hadn't received it and apologised for making me feel like I was going crazy, she then asked if she "made tomorrows blog". So here you are Victoria, you made it and for the record I appreciate your business and your support.

I am drinking cup after cup of coffee to the point where I feel like if I was to cut myself open it would be coffee that came out of my veins instead of blood and yet I am not at feeling "caffeinated" enough to deal with my day. I think this is one of the hardest things to deal with, the mind-numbing, body-crushing fatigue.

When you try to explain MS fatigue to a non MSer you get the "oh yes, I get tired too" sort of response. This is literally debilitating. I know I have talked about it before and no doubt I will talk about it again because it is so hard to explain. This isn't just tired, I literally feel like I want to curl into a ball and not move. Blinking takes effort today. My body feels heavy, like it is being weighed down by an invisible force.

Anyhooo Bleeps, that's me for today, cheery cow aren't I? I am broke, fed up and have no energy to do anything about it. For the first time in years I have no holidays booked and no money to make plans for one (anyone that knows me will tell you how much my drunken, karaoke breaks mean to me). To add insult to injury, I am sitting here and my knees are throbbing and feel crazy hot from inside.  Who the heck has throbbing, burning knee caps? Sod off MS, I am not in the mood for you today.

So enough about me, how are YOU?

Remembering Ronny

Today I am sad.

I am reminded how precious life is and how we should cherish those that we love.

My sister (Diane) and brother-in-law (Robert) said goodbye to a life-long friend yesterday. Ronny was one of my brother-in-law's best friends for over thirty years. Robert met him when he was just a young man and Ronny became a very special friend that would stay very dear to his heart for the rest of his life.

Ronny was my sister's biggest fan. She said that he was "the man I should have married (only because I was always right in his eyes.....even when I was wrong". It's true, she could do no wrong in Ronny's eyes, he would always stick up for her no matter what. He was also intensely proud of her and the children, always talking about them with the sort of pride usually reserved for Fathers or Grandfathers.

Ronny was diagnosed with stage four lung cancer between Thanksgiving and Christmas. It was a shock and devastating news. After a few weeks in the hospital getting treatment, Diane and Robert brought him back to their home in Florida (from Rhode Island) to care for.

Ronald G. Plante (Ronny) 6/20/31-1/23/12

They brought in the New Year all together sat on the bed. In his last few weeks he was surrounded by people that he loved and who loved him so very much, a true tribute to the fact that you don't need to be blood to be family. He was Godfather to my Nephew, their Uncle Na Na and my sisters "Sunshine". She told me how his face would light up when she sang to him.

He sadly lost his battle yesterday with Diane and Robert at his bed side, holding his hands and telling him that they love him.



Ronny was one of life's good people with a wonderful sense of humour. He was the person that my sister and I called from Las Vegas a few years ago, drunk and singing Abba songs down the phone. Even though it was the middle of the night, he never got mad, he just laughed at us and played along. I could tell you many funny stories about this wonderful man but for now I will just say that Ronny will be in the hearts of all of those who had the honour of knowing him. He will be missed.

Rest in peace sweet man.

It Wasn't a Drive, Drive!

Good morning friends.

I would like to share a funny story with you today, something that I did that I probably won't live down for a while. Even when you can attribute something silly that you do to something serious like MS it can still be ammunition for the family (and in this case, your man) to take the Mickey out of you. This is definitely one of those times.

On Saturday, Phil and I didn't really have any plans and we had a "kid free" day so we wanted to do something to get us out of the house for a while. Since he isn't originally from our lovely, little seaside town (he moved down this way after we met) there are still a lot of local villages and towns that we haven't explored together.

We decided to visit one of them as I had heard it was very quaint and neither one of us had been there. Well, it was a little disappointing (apart from a lovely little tea room where we stuffed our faces) and not much to look at so after an hour or so we got back in the car and started to drive, not really knowing where we were heading to.

I was having a good day (dizzy-wise) so I was in the driving seat and as I was driving along I jokingly asked Phil if the fact that we were "out for a drive" made us officially OLD now. Only old people "go for a drive" I said. He replied with "We are out for a drive, but not a drive drive".

Now I don't know if you guys are familiar with one of my favourite comedians but I started cracking up laughing at this point because I was instantly reminded of Micky Flanagan's stand-up routine of "Out out".

We were out for a drive, but not a drive drive. Ha ha! If you don't know Micky (shock, horror - how could you not?!) then take a minute (OK, just over 2 mins) to enjoy his genius!




Anyway, we were driving along and I asked Phil where he would like to go. He replied that he didn't know the area and so I suggested another little quaint seaside town (Whitstable) that I have been to and is really nice with cosy pubs and cute shops.

Off we went.

When I turned off at an exit, Phil asked where we were going (apparently he had just seen a sign saying it was 9 miles to go) and I replied I was taking him the "scenic route". Since he doesn't know the area that well he had no reason to ask for any more details.

We drove through country lanes for quite a while and then Phil realised that he was on familiar territory, roads that he recognised. It was at that time he asked "so how far to that place we are going?"

I looked at him all confused, "what place?" I asked.

"The place that begins with w"? at this point he looked at me like I had completely lost my marbles.

"What do you mean?" I replied

He looked at me for a second and asked "where are we going?"

"Home" I replied (at this point I was wondering why he was looking at me like he wanted to call the men with the white jackets).

"So, I guess we are not going to that seaside town that you told me about with the pubs and shops?" He asked.

OH. MY. GOODNESS!

I had completely forgotten where we were going. I had for some reason just started driving home, completely not realising that even though it was my suggestion, I had forgotten that we were on our way to Whitstable.

I started cracking up laughing but inside I was thinking "oh crap". I joked that I need to maybe start putting post-it notes in the car to remind myself where I am supposed to be going. How do you just forget where you are going? Especially when it's your own idea, you are en route and you are the driver?

Phil has since joked that he doesn't have to worry about me ending up going out and getting lost because I am like a homing pigeon and I will probably just keep driving home.

So enough about me, how are YOU?

Knock Knock

Who's there? Haven't got a bloody clue!

Where's she going with this I hear you ask yourself? Well this is what is on my mind today; lately I have been questioning who I am. Not literally of course, not in a " please read my name tag and return me to the mental hospital" kind of not know.

You see, I was recently approached by a student in the medical field who told me that their class was doing a study on MS and could they ask me some questions about what I was going through. For a moment I felt quite special and not in a "I lick windows" sort of way but more like "feel like I'm on Oprah" kind of special.

The questions started and I answered in the most honest way I could. Most of them were quite straight forward and dealt with the practical stuff like diagnosis and how I have been treated in the NHS (can open, worms everywhere!) but one was more personal in a way and this is the one that has stayed with me.

The question was something along the lines of "do you think people look at you differently or have changed how they see you since you have been diagnosed". It was something I hadn't really thought about up to that point but it did make me wonder.

Do people see you differently once you are diagnosed with a chronic illness? I mean, I don't want to be seen as "Karen with MS" or "Karen the sick person". I mean I have always been "Karen, a bit sick in the head" and I can understand that with my sense of humour. My friend Gill calls me "Karen, best boobs in Sandgate" and I am TOTALLY cool with that too (ha ha) but in all seriousness I don't want to be defined by MS. It might be what I have but it is not who I am.

I slept quite well again last night (two nights in a row now, woo-hoo!) although have to admit to feeling a bit muzzy this morning from over-indulging in the liquid grapes again. I know, I know, it's bad for me and I need to drink less but hey it was Friday and besides, you can't tell  me what to do, you're not my Mum (I bet my Mum will call to tell me off now).



Having said that, even with the self-induced head fog my MS symptoms are definitely milder today.  In fact thinking about it, they were milder yesterday too. Does this mean I am going into remission? Do I get my hopes up?

Will I no longer be "Karen with MS"? Will I soon be "Karen, all better now"? Or is this just how this is going to be? It will come and go, some days worse than others? Some days good, some days not so good? Maybe I am "Karen feeling good today, I'll get back to you tomorrow". Perhaps that is all part of learning how to live with any chronic illness, you take one day at a time and celebrate the good days.

Thinking about it, I think I will just see myself as "Karen with MS (and great boobs) taking one day at a time and appreciating my friends, family and life every single day regardless of how I am feeling". Yes, I like that - let's run with that one!

So enough about me, how are YOU?

Who's Your Daddy?

Yay, it's FRIDAY!!!

I feel a bit of a fraud being so excited about it really because like I said yesterday, I get to work from home in my PJ's if I wish so it isn't like I have to worry about a horrible train commute or going out in the cold to get to work all week. I don't have a boss breathing over my shoulder, I am very grateful for that!

What I really love about the weekend though is that it means that we get to lay in bed and be lazy for two days in a row. There are no school runs, no reasons to get up early. Phil and I have a deal where Saturday is my turn to make coffee and bring it back to bed and Sunday is his. One Saturday he even convinced me to make a bacon sandwich with the promise that he would do it the next day. He went back on that promise so I won't be falling for that one again!

The best part is that together we watch the Maury show and goof on how outrageous some of the guests are! We actually get disappointed when he does the shows where he brings on exotic animals. I mean, if we wanted to see that then we would go to the zoo.  We want to hear "You are NOT the father".

We also crack up at the ones where the "cheater" gets busted by the "sexy decoy" in the green room and still tries to convince his partner (before I get any comments, it is usually the men that fall for a sexy decoy) that he isn't cheating.  Even after a lie detector, I mean come ON, where do they get these people?

Does it make us sick in the head that we enjoy this stuff so much? Can I blame my brain lesions? Phil doesn't have any brain lesions, he has no excuse!

As you might be able to tell already from the tone of today's blog, I have woken up feeling GREAT today. Not physically but mentally strong. This is the second day in a row of feeling positive and I am going to try to keep it going.

I will be completely honest I had a little wobble yesterday in the early evening.  I had spent most of the day with my fingers in my ears saying "la la la la I can't hear you" to my body tingles and zaps and by about six o'clock I was being worn down and really wanting a glass of wine. You see as soon as I have a glass of wine these physical feelings go away and it is such a relief but then I feel like rubbish the next day if I have too much.  As I said to a fellow MSer (also a wine lover), it seems to be a choice between going insane from the mental torture of MS symptoms or risk liver disease.  Decisions, decisions!

Anyway, I had two SMALL glasses (probably one pub measure) and that was it. I had the BEST night sleep last night too, which is the first in many months without the help of wine or sleeping tablet. I fell asleep by about 10pm and woke up to the alarm at 6.30. I mean an ACTUAL alarm, on a CLOCK. Not my body alarm that seems to want to kill me every night!

It isn't even 9am and I am up, showered and make-up on. This is the first time in weeks that I have had the energy to shower before noon.  I am meeting a lovely friend for coffee this morning (I haven't seen her since August of last year so I am very excited) and I feel like today is going to be a good day.

The ice cube is back in my brain (not literally of course, it's just how I can describe how it feels) and my left eyeball feels like it is being squeezed from behind. I am having pins and needles type tingles in my feet and I am light headed but once again I am NOT going to let it get me down.

I do think my decision to choose to be happy yesterday made a big difference to how my day panned out. I uploaded a few funny photos to my facebook and had some lovely chats with friends (oh, and got some work done too, don't want you to think I just goof around all day). I chose to be happy and the end result was that I felt happy. I made a nice spicy chili for dinner and enjoyed the company of my daughter and her boyfriend.


So for today I will leave you with a "Friday Funny". I think I will try to bring you a "funny" every Friday although I should probably warn you that I can't guarantee that my jokes and funnies won't sometimes be a little "close to the mark" but hey, that's just who I am.

So enough about me, how are YOU?

Today I Am The Pigeon

Today is going to be a good day, simply because I say so.

I am exhausted this morning from another night of insomnia. It wasn't as bad as usual though as Phil was awake too so we watched "The Running Man" in the middle of the night. It is shocking how bad the selection of TV viewing is at 3am, it's almost as if people are expected to be asleep at that time! It is also shocking how the writers thought that some of the one-liners in that movie were funny!

Amber: (after Richards cut Buzzsaw in half with a chain saw) "What happened to Buzzsaw?"
Ben Richards: (Arnie) "He had to split."

Really?! Ha ha! You just have to love those 80's movies.

I also have to confess to being a little hung over too as that one glass of wine that I had planned with my Indian meal turned into three (ok, ok four), oops! So even though I have a fuzzy head and am very tired I have decided that today I CHOOSE to be happy.

When you have a chronic illness one of the things that you don't want to hear is that it "could be worse". Even though the person that says it is usually well meaning, it makes you want to high five them, in the face, with a chair (I have to admit to seeing that "high five" saying somewhere but it made me chuckle and I can relate so I have borrowed it to make my point)!

However, the reality is that it COULD be worse.

I have a lot to be grateful for. I am head-over-heels with an amazing man who has been by my side every step of the way with 100% support. He makes me laugh and is the most caring, loving man I have ever known (and on top of that he has a really nice bum).  My children are healthy, happy and fill my heart with pride and joy.  I have the love and support of my family (in particular the best sister in the world) and I am surrounded by wonderful friends (both new and old).


I am lucky that I get to run my own business and work from home. I can do this in my pyjamas if I want to and even (with my laptop in front of me) watch the Jeremy Kyle show at the same time. If THAT show doesn't make you feel good about your life then nothing will!

Yes my body is going through a little rebellious stage, so what? I won't let it get to me today.


I am going to ignore the numbness, tingles and zingers in my body. I will say to them (in my head, don't want to look like the crazy lady talking to herself) "you are not going to get me down today, I am going to pretend you are not there".

If I get tired this afternoon after I get my work done then I will allow myself to rest without feeling guilty. I am going to count my blessings today rather than worry about or focus on what ails me.

Life is good and so I will smile and focus on what is positive in my world. Today I am the pigeon.

So enough about me, how are YOU?

Back On The Emotional Roller Coaster

Yesterday was rough. I am not going to lie. I cried ... a LOT! My poor sister took the brunt of my emotional overload on the phone. Even though we live over 4000 miles apart, she and I are super close and speak on the phone most days.

She has a lot going on in her life at the moment, things that would break most people and yet she is always there to listen to me. I will never be able to put into words what she means to me or how much I love her. She is such a special gift in my life, she is my biggest supporter and is always on my side. Poor thing probably regretted asking that dreaded question "How are you feeling today?"

I was having one of those days where I was feeling extremely sorry for myself. I was working on only a couple of hours of sleep and I felt dizzy, exhausted, tingly and numb. I was back on the emotional roller-coaster that is MS.

Since doing my research into my symptoms (both pre and post diagnosis) I have joined many MS groups looking for information about the disease, as well as possible treatment options. I have been very lucky and have met lots of new friends and they too have been a great source of support and advice as I struggle to come to terms and adjust to my feelings, both physical and emotional.

Some MSers that I have become friends with are further along the path of being diagnosed and have learned how to manage their day-to-day "stuff". Others are more like me, still riding the ride of emotions from day-to-day and fumbling around trying to adjust. One of these lovely ladies was offering me support yesterday and I told her that my blog was going to be so depressing at this rate and that I might not bother, I don't want to bring people down. She replied "but it's just the truth of MS. People with the illness will be able to relate".


I got through my day and decided to "snap out" of the funk I was in. I prepared a meal made from a new recipe and pushed all the negative thoughts to the back of my mind so that I could enjoy the evening with Phil and my girls.

However, the only way I can describe my evening as I sat watching TV is psychological torture. It was like there was an electrical storm inside my body. Tingling in my legs, electric type zaps in my fingers and toes, a numb face (complete with tingling lips and tongue) and the return of the ice-cube in my brain. I so badly wanted to neck a couple of glasses of Pinot Grigio to dull these senses but I was determined not to. I don't think the cure to MS is at the bottom of a bottle!

Sometimes this feels like a nightmare that I can't wake up from. I want to wake up! I want to make plans and look forward to them without the immediate thought entering my mind of "but what if I don't feel good on that day". Phil and I were watching a TV show and someone was talking about his trip to Vegas. Phil and I have both been to Vegas but never together, he looked at me and said "we should go to Vegas, we would have a wild time". We WOULD have a wild time because we both like to party but then the little voice in my head said "but what if you couldn't handle it, what if you didn't feel good and ruined the whole trip?" SOD OFF voice in my head, always bringing me down lately.

Last night I couldn't fall asleep so I took a sleeping tablet. I lay in bed willing my body to "switch off" so that I could sleep. Finally the tablet did work its magic and I drifted off, sleeping right the way through until 7am.

This morning I have a sleeping pill "hangover" and my body is zippy-zappy as always. I won't let it drag me down today however because it is "Date Night" with my man and I have a lovely Indian meal to look forward to. I might even have ONE glass of wine.

So enough about me, how are YOU?

Have A Heart

When I went to my Doctor back in October and had my "you HAVE to help me" meltdown, one of the symptoms I told him about was chest pain and the inability to get enough air into my lungs.

He put me on an ECG monitor, which showed a slight abnormality and it was at that time that he referred me to both a Neurologist (for the other symptoms) and a Cardiologist.

As you may know (if you read my first blog) I paid privately to see the Neuro because I didn't want to wait the three months for an appointment but I waited for the Cardiologist as my gut instinct was that whatever is going on with me was not a heart issue.

I have continued to get the chest pains and shortness of breath but I believe them to be MS Hugs. I asked my Neurologist about this and he seemed reluctant to attribute these symptoms to MS and advised me to keep my Cardio appointment anyway.

I went along to see the Cardiologist yesterday and he did another ECG, which again showed the slight abnormality.  I then asked him his opinion about the kind of chest pain I get and he said that his gut instinct was that the issues I am having are NOT cardiac but he wants to be careful anyway.

I do have high blood pressure and heart disease runs riot in my family on my paternal side so because of this he said he wants to check me over a bit closer than he would "the next person" just to be on the safe side.

He has ordered that I wear an ECG monitor for a week (24 hours a day) and also do a stress test, where they stick you on a treadmill and monitor your heart under exertion.

Now, the 24 hour a day monitoring is a bit daunting because ummmm, well, how do I put this?  Slightly embarrassing but will I have to explain myself when it shows times that my heart rate increased?  If so, Phil is out of luck for a week! Or, do I just take off the monitor and say what?  My heart stopped beating for while? I need to think that one through. ;)

Also another concern is how the heck and I going to do the stress test? I have had one of these before and it was a breeze. I was fit back then and had no symptoms so no big deal, jump on the treadmill and keep up while they make it go faster and faster. I have NO energy right now. None, zip, nada.

I am hoping that the NHS is it's usual self and the appointment takes weeks to come through by which time I will hopefully be feeling better and more up for the job.

Wishful thinking?

So enough about me, how are YOU?

Time To Get Busy

Morning friends.

I have woken up today with one thing on my mind, getting my accounts up-to-date so that I can get all of my paperwork over to my accountant. I have been procrastinating and now I have a mountain to climb to get it all done so that my tax return can be filed in time. I have been ignoring his phone calls and it is getting slightly embarrassing now. The problem is that I can't remember exactly what he asked me for, you see we spoke on the phone before I started using Post-It notes. Got to love these cognitive issues eh?

I have been so tired and fed up with feeling rubbish that really I have been putting off a lot of things lately. That leads to me laying there in the middle of the night with my usual insomnia, worried and getting knots in my stomach thinking of everything I have to do. They say stress is bad for MS and I am not really helping myself by putting jobs off and letting them build up. I know this but I just haven't figured out how to deal with it better.

I suppose one of the "tricks" I am going to have to learn is how to juggle what needs to be done every day (both from a personal point of view and business) with managing how I am feeling both physically and  emotionally.

How do other MSers do this? How do they get up every day and go to work, look after their families and get on with it? Is there a class I can go to? Can they send me some tips please?

I wonder if I had medication for the fatigue, would I have energy to get motivated every day? What if I could get a full night of sleep, would that help?

Also, I wonder how many MSers do a symptoms "check list" when they wake up like I do? Am I dizzy today? No? Cool! Oh wait, there is pressure in my head, is the ice-cube still in my brain? Yup, bloody thing hasn't "melted" yet, bummer! Can I feel my face? No but my lips aren't tingling and I can feel my tongue. Hey, every cloud!

Maybe this is a mental game to learn too. Do you ever stop doing a "check list", does this become the new "normal"?

I see a LOT of coffee being consumed today because I don't think Mr. Tax Man will be as understanding of my condition as my friends and family have been and so I must get done what needs to be done today, regardless of how my head feels.

So enough about me, how are YOU?

Iced Brain

It is Sunday afternoon and I am sitting on the sofa watching two of my lovely girls do my Zumba workout. They are having a great time, laughing and joking away with each other. I say MY Zumba workout but to be honest I have never even done it.  You see it was around the time that I ordered the entire kit that my symptoms all flared up and the most energetic thing I have done since then is start this blog.

I keep waiting to wake up symptom free, is that ever going to happen? I want to Zumba!

Today I have been on pain pills (the strongest over the counter ones available) trying to relieve some of the pressure in my head.  It feels like someone literally has my head in a vice grip. It is NOT nice.  I have never really been a person who gets a lot of headaches or migraines (in fact I don't think I have ever had a migraine from my experience of friends who suffer with them) and I would rather not start now thanks.

Last night the insomnia kicked in and when I got up to go to the bathroom I noticed a really strange (new) sensation in my head.  It was as though somebody had popped an ice cube into my brain.  Literally the left side (near the top) of my head had a feeling of being freezing cold and almost wet.  It felt weird and more than a little worrying.

When I saw my Neurologist last week he said that he "wasn't worried" about any of my symptoms although he understood that they were "bothersome" to me.

Bothersome?  BOTHERSOME?  Hey Doc, let me stick that pencil in your eyeball and then tell me if THAT is bothersome (sorry but I do get annoyed when how I feel is minimised by someone that should have more understanding)!!

So, once again I am back on the internet to see if the ice cube in my brain is something typical for MS sufferers and sure enough, the cold and wet sensation seems to be quite common.  I think my Google is going to start saying "Oh no, not you again" soon.

I have spoken to so many people who have felt like their Doctor didn't believe them or thought they were exaggerating.  It seems to be such a common theme.  I am almost at the point where I am not comfortable reporting any of these new symptoms or issues as I don't feel like he wants to hear about another "bothersome" issue.  I think that is quite sad really but it just seems to be the way it is.

I truly appreciate all of messages I have received from other MSers sharing their own experiences because it is a reminder that even though it feels like it sometimes, I am not alone in this nightmare journey.

I am determined that I WILL be doing Zumba soon. I just need my friend Caroline to finish the magic fairy dust that she promised me she is working on, which is really nice of her since I would never let her be "Sandy" when we did our version of Grease. I just hope that this new feeling in my head won't be a regular visitor.

So enough about me, how are YOU?

Bottoms Up!

Yesterday I decided to pick myself up, brush myself off and get on with it (whatever that means).  I mean, if the Doctors won't help me then I just have to help myself!

I was speaking to an MSer who has been fighting for an "official" diagnosis for YEARS and has been where I am.  Her advice was to find a way to deal with my symptoms without drugs (not that I can get them anyway).  She gave me a ton of useful tips and I felt really encouraged by her positive messages of support (thanks Kay).

I am also quite aware that I don't want to be a complete drag where my man is concerned.  He met a healthy, happy, FUN woman and not someone who is sick and tired all the time.  I don't want him to get sick and tired of me being sick and tired!

I pulled out my skinny jeans with a sexy, low cut top (hey, if you've got it flaunt it right?) and got myself glammed up to go out for a nice Indian meal.  Since I got sick I haven't been able to go running and then on top of that we have had Christmas so I have gained a few pounds. I have had people tell me that I needed to and that I was "too skinny" anyway (is there such a thing as too skinny?) but I need to feel good about myself so I have been dieting this week (or at least laying off the pork pies and biscuits).

When Phil came home and asked how I am feeling, I replied "Fabulous". Little white lies don't count in this situation.

We arrived at the Indian and I was given my usual large glass of wine (they don't even ask now, the waiters know us so well that they just bring our drinks) and I slowly sipped on it as I munched on popadoms and looked over the menu.  Because I hadn't eaten much during the day the wine went right to my head.

The things is, as soon as I start to feel tipsy I stop feeling tingly.  The horrible sensations that seem to constantly run through my body fade away and I feel like my normal self (almost).  I am not even bothered by my numb face, all feels right with the world. So one drink led to two, led to three .... you get my point.

I have asked other MSers if they drink alcohol and some do while others can't touch a drop.  Much like the disease it seems that it is different for everyone with how their bodies respond to it. I don't feel any worse for drinking usually (and I do like my wine) but let me tell you I was awoken by the most intense electric shock sensations in my finger tips in the middle of night.  My arms were going crazy, literally freaking out with tingling and zappy feelings with a whole new level of intensity. I was literally jumping with every shock.

Was my body rebelling?  Was it reminding me that ultimately I will have to pay the price for my fun?

I have been reading books about managing MS through diet and healthy lifestyle and I have to be honest, I am not sure if I am up to the job 100%. I have never been one of these people that can throw themselves into what it "good for them", although I have started drinking a "Green Machine" smoothie every day.  It has all of my 5-a-day with algae and wheatgrass thrown in for good measure and it actually doesn't taste bad. That is a HUGE step in the right direction for me as I usually alternate between coffee, starvation and junk food.

Today I feel muzzy headed (self inflicted and totally deserved) but you know what?  It was worth it.  Life is too short to not drink wine and sometimes I think it is important to try to re-connect with who you were BEFORE you felt unwell because it is easy to become all-consumed by it and somehow lose your sense of self.  I will continue to work on that side of myself - I am too FABULOUS to lose "me" to MS after all.

So enough about me, how are YOU?

Back in Wonderland?

Hopefully you will know my story if you read my first blog.  You will be familiar with how I was fobbed off by Doctors until I paid out of pocket to go private and finally got to a diagnosis of MS on Dec 22.

Well, when I had that follow up appointment (privately) with my Neurologist he realised that although he had the results of my brain MRI (which showed the lesions) he didn't have any for my spine.  He re-read his notes and realised that it was his error and that he hadn't actually ordered the spinal one, only one of my brain.  He apologised up and down and said he would need to re-do as he felt that my leg heaviness and limb symptoms may be as a result of spinal lesions.

It was at that moment I asked him if I would need to pay again for the test as I was self-funding. He said that he hadn't actually realised I was self-funding and that he had probably saved me hundreds of pounds. He went on to add that he would transfer me across to his NHS list and see me in clinic, I felt that finally I had someone on my side.

Yesterday I went to see him, armed with a list of new symptoms and to find out what the next step is. He explained that they have to run all the tests again (through the NHS) I guess almost ticking off the boxes to fit the protocol to diagnosis (he said it gets tricky with someone that starts private and then goes back to the NHS).  He said that they have to "gather the evidence" and satisfy all the steps so at this point I am at an official diagnosis now of "Probable MS".  Fine, I can accept that.  There are rules and protocol, I get it.

What I don't get is this; Once I do all of these tests and if I get to a diagnosis (again) of MS he said that I need to prepare myself for the fact that I probably won't fit the criteria for the DMD's (Disease Modifying Drugs).

So excuse my graphic choice today but it does accurately portray how I am feeling.  Screw you medical system.  I am fobbed off for years, go back and forth to finally get a diagnosis and then my Doctor jumps back on the fence.  I need to go through more tests, including having a needle in my back to collect spinal fluid (no small thing for a chicken like me) and then after all that IF I do get an answer I won't be eligible for medication.



Until when?  How rubbish does my quality of life have to get before I meet whatever the target is?

Where does this leave me? Am I officially back in Limbo-Land?  Do I get my hopes up that I am not actually a member of this club that nobody wants to belong to? Am I back to facing a name-less enemy (even though I have already been told I have MS once)?  Does it even matter though as I don't get the ammo to fight it because I "probably won't fit the criteria"?

What does this mean?  Is this IT?  I have to feel like this all the time?  I feel like I am going CRAZY.

So last night I was beside myself as once again insomnia kicked in at 2.30.  I lay in bed thinking "what if".  What if the rest of the tests come back negative?  If he is no longer willing to diagnose me based on the brain scan, symptoms and history as he did in December and the rest of the tests come back clear, then what?

He still thinks this is a neurological disorder as I have had every blood test under the sun, ruling out other mimics such as B12 deficiency, Lyme etc so in the early hours of the morning I Googled; Neurological disorders that mimic MS.

Nothing fits my symptoms except something called Fibromyalgia, although apparently this doesn't show up on an MRI and I have something on my MRI.  Also, it just doesn't quite "fit".  Am I grasping at straws? Uugh I am soooo confused and sad.

I have had many facebook messages from other MSers who took YEARS to get their diagnosis and I am so worried that I will be in their shoes.  I just want to KNOW.

Maybe I should change my Blog title to My Journey Through LaLa Land because that is how it feels.  I am sure there will be Limbo-Landers who can relate to this Blog today as well as MSers who may have had the ups and downs to diagnosis.

I am convinced that it is not only the disease that causes the 75% depression rate but also the way we have to struggle and fight to find out what the heck is going on with our bodies.

So where do I go from here? I will do all the stupid tests and regardless of whether I get an answer or not, drugs or not, I will continue to be fabulous and live my life, enjoy my family, love my sexy man, have my laughs with friends, take my holidays, drink my wine and sing karaoke.

So enough about me, how are YOU?

You Are Invited

To my pity party.  Mood swing alert!  Has anyone seen my sense of humour?  I seem to have mislaid it this morning. Anyone that has been reading my blogs (thank you) may have noticed that I am trying my best to "soldier on" with a smile (and a laugh) and not be dragged down by this thing but let me tell you that today I am finding this really tough.

Yesterday afternoon I lost my right arm.  Not in a "where did you last have it" sort of way but it just went "dead" on me.  I kept feeling like I needed to stretch it out or shake it.  It felt like someone had filled it with lead and at the same time like ice cold water was being poured up and down inside.  This was a new feeling, another symptom to add to the list.

I decided to shove this horrible sensation to the back of my mind because I had arranged to go see my lovely friend for a coffee and catch-up. I excitedly told her about my blog and how I was determined to keep positive and happy.  She listened thoughtfully (as she always does) and then she asked me if maybe it hadn't really sunk in.  She knows me quite well and can read me like a book most times and she commented that while she thinks it is great that I am keeping my chin up, she wondered if maybe "somewhere" I was still hoping or expecting the doctor to tell me that this was all a big mistake and that I don't really have MS.  Rather than tell her she was wrong or off-base, I sat and thought about it for about two whole seconds and then I started to cry.

There I was all, "I am so cool about this, in fact I am enjoying my blog and this could be a whole new thing in my life" (which is partly true) but then once again it hit me that actually this SUCKS.  I don't want MS.  I want to return it but can't find the receipt.  Where are the ctrl, alt, delete buttons for this thing?

Today I have woken up (after another night of tossing, turning and hardly any sleep) with my arm still heavy like lead.  I am seeing my Neurologist this morning for the first time since my diagnosis and I am going armed with a list of questions and new symptoms with the hope that he will start me on my treatment.

I don't know the protocol of how this all works, I guess today is the day that I will find out.


So I guess this is a bit of a reality check in as much as I won't always be able to smile on this roller coaster and I will have the occasional pity party (cue music; "it's my party and I'll cry if I want to").

I SO don't want to be a "Donny Downer" as I have had so many people tell me how they admire my positive attitude but I guess I am just a mere mortal after all (boy, is that disappointing to realise) and today I am feeling a bit sorry for myself.

So enough about me, how are YOU?

Laughter Is The Best Medicine

When I started this blog just over a week ago it was largely for selfish reasons. I wanted to write out my thoughts, feelings and experiences as I faced this challenge head on.  I have been overwhelmed by the fact that it has been read by thousands of people already (seriously, how crazy is that?) and I have had such an outpouring of support and love.  I have had other MSers tell me how it has helped them to read about someone that feels similar to them and I have been very humbled and honoured by the messages.

I have also had a couple of people ask if I am concerned that I might offend other MSers with my sense of humour. I really hadn't considered this as a possibility as I simply write from the heart and from my own experiences. I do use humour to express myself but I am in no way trivialising this awful illness.

Ask any of my friends (going right back to primary school) and they will tell you that I have always been a bit of a clown.  I will be the first person up on the karaoke (even though I am tone deaf - sorry Pixie Lott for killing your songs!) and I will quite often be the girl that makes a complete idiot of herself at a party.

It's just who I am and who I have always been and let me be clear, I have MS but it doesn't have ME.  I won't let it change who I am as a person.

It did get me thinking though that when we are faced with something negative in our lives (and surely a chronic, life-long, possibly life-changing, brain-eating disease with no cure qualifies?) then in my opinion this is the EXACT time that we need to dig deep and try to use our sense of humour. What is the alternative?  Crawl up into a ball in the corner of a room, wailing "it's not fair"?  No thanks.

I wont lie, I have had my moments and I am sure I will have many, MANY more.  I have sat and cried like a baby but it is usually out of frustration that I am feeling weak or I have a new symptom that makes me wonder if the rouge soldiers in my brain have launched a new attack.  Then it is time to dry the tears, take a deep breath and carry on with a smile.

When I came up with my T-Shirt idea of "It's Not Merlot, it's MS", my partner Phil said he would get a T-Shirt to wear at the same time that reads; "I'm with the Drunk".  I couldn't stop laughing at the visual I got of us both wearing those shirts.  I supposed there might be some people that might not "get" our sense of humour or our ability to make jokes at a "time like this" but actually it is the jokes and laughter that have kept me from sinking into a very dark place.

I read an article that said statistics show that 75% of MSers suffer from depression.  That is awful but I can understand why, it can be a very lonely disease.  They say that you don't "get" MS until you GET MS and that is why I am trying my best, through sharing my own experiences to raise awareness.


So, I leave you with this little poem that I threw together (hope you enjoy):

Tingle tingle on my tongue,
Please go away, it isnt fun.
Twitchy twitchy little toes,
When will it stop?  nobody knows.

Feeling numb all in my feet,
Makes it hard to feel the street.
I stumble left, I wobble right,
I must look drunk, a funny sight.

MSers listen, one and all,
There is an upside after all.
You forget a birthday or a date,
It's your disease, they cannot hate.

So keep your chin up, soldier on,
Or else this illness will have won.
Keep on smiling, you know its right,
Don't let it beat you, fight the fight!


One of my friends recently said I could be the "Carrie Bradshaw of MS" and what a great compliment although to be fair, if I bought myself a pair of Manolo Blahnik or Jimmy Choos I would probably just fall on my bum!

So enough about me, how are YOU?

The Invisible Monster

Some of my friends have made the comment lately that they don't really know much about MS and yet since I have been diagnosed I have also had so many people telling me that they know someone that has this horrible disease.  The reality is that most of us come in to contact with an MSer every day but probably don't realise it because this is an invisible monster.

How many times have we MSers encountered the "but you look good" comment?  That's because most of us don't show outward signs of our symptoms, it all depends how the condition affects the individual.

My first encounter with someone with MS was when I was in my early twenties. I was living in Florida at the time and met a lovely woman the same age as me with a daughter the same age as my eldest (at the time about 3).  We became fast friends and were almost inseparable as our children played together.  We spent many days at the mall, beach or playground with our girls.

At her daughter's birthday party I noticed that her mother (who I had never met before) was stumbling around the room and I just assumed that she had been over-indulging in the festivities.  It wasn't until a few days later when I asked my friend if her mum was OK that she told me she had MS.

I didn't ask many questions but did feel ashamed that I had assumed (wrongly) that she had been drinking.  This has happened to me recently (in case you missed my previous blog) so I guess it is true about Karma being a bitch, eh?

I still didn't know anything about the actual disease or what happens in the body so when I was then told by a Doctor a short while after that he thought I might have MS I was literally terrified.  I immediately thought my life would be over or I would "end up" in a wheelchair.  I now realise (being older, wiser and better educated) that this isn't always the case and there are many different forms of MS.

My daughter recently asked me "so what exactly is MS?" and the way I described it to her is that our body has good soldiers (immune system) on the look out all of the time in our bodies to fight off any bad soldiers (viruses or bacteria).  Well for some reason some of the good soldiers in my body went rogue (bad working conditions?  Not enough pay? Too much Daughtry music or Real Housewives on TV?) and decided to turn on their boss (the brain and/or spinal column) and attack it.

These rouge soldiers attack the Myelin (insulating coating) around the nerves, which stop some of the messages from the brain getting through correctly.  These soldiers can attack anywhere in the brain/spinal column, hence the reason why the symptoms are so varied and different for each person.

Most of my symptoms are sensory so they can't be seen, although the chronic fatigue is easy to see before I cover my dark circles with make-up.

My Neurologist told me that he feels I have a "mild" form of MS.  Of course that is good news to hear but a little baffling as these symptoms sure don't FEEL mild.  

I was talking to a fellow MSer about this and he too was told he had a "mild case", even though he sometimes completely loses his legs from under him. His advice was that even Neurologists don't understand how we truly feel because they haven't experienced it themselves.  His told me that the next time a Doctor tells me that it is mild I should grab his pencil, jab him in the privates with it and tell him now THAT is mild compared to MS! 

So enough about me, how are YOU?

Don't Get Your Knickers In A Twist!

I thought that this morning I would share an embarrassing moment with you.

On Saturday I went into town with Phil to get out of the house and also to get a little bit of exercise as I seem to spending a lot of time on the sofa lately (thank goodness I work from home).

I had to hold onto Phil's arm as we navigated around the high street as I felt quite dizzy.  It was quite disorientating as people walked towards and around us, I felt as though I was floating or as if I was walking on jelly (that's jello for my friends across the pond) and it seemed as though everyone else was whizzing by at high speed.

However, it was nice to be out despite the way I was feeling and so I decided to take advantage of being in town and pop into a well-known clothing shop to buy some new jeans.

I grabbed a couple of pairs in different styles and headed to the changing room to try them on.  I selected the first cubicle, pulled the flimsy curtain closed and undressed.

Now, I need to digress a little here as I want to tell you about something that happened to someone very close to me, which had an impact on the way I dress.

This person had a horrible sporting accident that resulted in them having to be taken to hospital in an ambulance.  Though this person had awful injuries (that staff said looked like the result of a motorcycle accident) one of the main things that horrified her was that her underwear was old and full of holes and she was embarrassed.


It made me chuckle at the time because we are so similar in the way we think and I would have felt equally mortified.  Thankfully she made a full recovery from both her injuries and embarrassment. Ever since I have always made sure that my underwear is pretty and matching (you never know if you're going to get in an accident).

This Saturday I was very glad for this because you see as I lifted my leg to put into the jeans I completely lost my balance, stumbled backwards and fell BOTTOM FIRST through the curtain.  My bum (and thankfully pretty knickers) on full display.  I quickly jumped back into my cubicle and spent the rest of the time leaning my bottom on the side wall to avoid more tipping over.

Of course, being the changing room closest to the door meant that I would have been in full view of the people in the store (and husbands waiting for their wives/girlfriends) and who knows if they saw anything but I just walked out with my head down and eyes on the floor, too embarrassed to make eye contact with anyone.

Mental  note to dizzy self: always lean on something hard when trying on clothes.

So enough about me, how are YOU?

Have You Heard The One About Twitchy Toes?

One of the things that MSers talk about is the fatigue.  Now let's be clear, this isn't just the feeling of being tired.  This is the kind of fatigue that makes you want to crawl up in a ball on the sofa and not move.

Yesterday when I woke up I had decided that I was going to thumb my nose at MS and finally get that Zumba DVD out of the box.  You see before I had this relapse I had ordered the whole Zumba exercise package, complete with the Toning Sticks (that sound really funky when you shake them and take me back to my school days when I was allowed to use the maracas).  I woke up fully intending to get my bum off the sofa and that maybe if I exercised I would feel better and more energised.

Well, that is what my HEAD wanted to do.  My body however had other ideas.

Every time I stood up the room would spin around like I was on a merry-go-round and my legs felt weak and trembly. By Noon I hadn't even mustered up the energy to shower, which was a little embarrassing when a delivery man (who comes here quite regularly) rang the doorbell.  I apologised for my appearance (didn't want him to think I was a lazy cow for still being in my pyjamas at lunch time) although when I explained why he very sweetly told me that I "still looked gorgeous" to him.  He did make me smile but was clearly not mentally balanced!

You see lately my shower is taken in shifts and goes something like this:

Step one:  Take a shower, wrap hair in towel and put on PJ's.
(Come downstairs and sit on sofa for half an hour).

Step two:  Go back upstairs, get dressed and apply makeup.  Comb wet hair through.
(Come downstairs and sit on sofa for half an hour, let hair dry out).

Step three:  Try to make the best of the hair that now looks like crap because I was to knackered to blow dry.

So to get to my point (oh there is one? I hear you say) you would think that after feeling this exhausted all day long that I would fall into bed and into a full night of blissful, deep sleep, right?


WRONG!

You see in some sort of sick cosmic joke there is a thing called MS Insomnia and I suffer from "Middle Insomnia", which means I fall asleep and then every night, like clockwork at around 2.30am I am wide awake and just can't get back to sleep.

How rubbish is that?

After a couple of hours of laying there in the darkness I was bored with facebook and had read the downloaded digital magazine from cover to cover.  I decided to put the put my iPhone down and try to shut my eyes.




It was at this point that my toes start to twitch.  "You have GOT to be kidding me".  I actually said that out loud, hoping my toes would hear and go to sleep.

My other half, Phil, woke up and asked what the matter was and when I told him he said "hey, I have a joke for you".

"Go on then" I replied.

Are you ready for this my friends?

He replied with "what's the difference between twitchy toes and non-twitchy toes?"

I knew this wasn't going well but played along.

The punchline?  MS!

He started to chuckle to himself (he was so proud, bless) and I just said "not funny".  He was trying to cheer me up but personally I think he should leave the funnies to Michael McIntyre (but don't tell him I said that!).

Today I was supposed to be going to the gym for a swim (thought this might be a more realistic goal than Zumba) but it's almost noon and I am still on the sofa.  I am however showered, dressed and made-up (although I have to confess to wet hair).


So enough about me, how are YOU?
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