Floating in Denial

Good Morning Bleeps.

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

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

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

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

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

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

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

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

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

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

Bugger. Bugger. Bugger.

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

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

So enough about me, how are YOU?

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?

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?

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?

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?

I'm an Angry Bird

When I was a bereavement counsellor, I had a client who was "stuck" in her grief and at every session would wail "why me?"  As a non-judgemental counsellor it was my job to help her through these feelings but I have to be honest, there was a tiny part of me that sometimes thought "why not you?"

Fast forward a few years and as I face this new challenge of MS I have been all over the place with my feelings, even dipping into a little bit of "why me?" but as I thought of my client - why NOT me?

Of course it is only two short weeks since I was officially diagnosed but since my first Neurologist maaaaaaaaany years ago, the symptoms that I have been experiencing over the last couple of years fit MS so much that I suppose in some ways I had almost diagnosed myself.  It's fair to say it wasn't a surprise at all.

The day I was diagnosed was December 22nd and my Mum had flown in from Florida, where she lives, to spend Christmas with us.  That night as I was going to bed, after talking it all through, my Mum actually said to me that I needed to take this "more seriously" as it is in my nature to joke (I guess it is a coping mechanism).  Well, I have moved on from the jokes and now I am ANGRY!

Even though I had my suspicions I was also hoping it would be something like a trapped nerve or something that could be "fixed".  MS can't be "fixed" and each day seems to bring a new sensation and I am getting pissed off at the body that I have exercised and  looked after most of the time (with the odd burger and bottle of wine thrown in for good measure) for betraying me.

I lay in my bed at night feeling awful and I picture my brain, wondering what is going on in there?  Is more damage being done or are these symptoms a result of the lesions already there?

I am usually quite a happy person and I feel like I am turning into a grumpy, moody, weepy, pathetic person.  How annoying I must be to know right now.

I am also quite vain (which woman isn't?) so I wouldn't dream of leaving the house without my full face of make-up (including lashings of the very best under-eye concealer to hide these dark circles) so I LOOK alright to everyone, which of course is the goal when applying the cosmetics.  Then I get MAD that they can't tell how ill I feel.  

I feel myself feeling frustration towards well meaning friends who tell me that it could be worse or how they know someone with MS that is doing great.  I KNOW this is coming from a loving place to make me feel better and I would probably say exactly the same thing to someone if the situation was reversed.  I want to say that I am NOT your Auntie Mabel and the reason that MS is referred to as the snowflake disease is that no two patients are the same and will experience their MS in a different way.

Of course, this is what I want to say but I wouldn't because at least these friends and family have offered support and said something. I am so thankful for each of my lovely friends and family who have offered support, listen to me moan about my symptoms (usually for the 100th time) and have never once made me feel like I am putting on them.

The people that have hurt (and angered) me the most are the ones that have said nothing at all but then I guess at times like this you discover who you can really lean on and who really cares.

I know that anger is part of the grieving process and as an ex-counsellor I know that when a person is diagnosed with a chronic illness they may go through all sorts of emotions of grief including denial, anger, depression and finally (hopefully) acceptance.

I am in the angry bird phase right now so I apologise in advance if I am a snappy cow-bag.  I hope I don't offend or push you away along the way. I really don't mean to be such a drag.

So, enough about me - how are YOU?

x