Warning: Emotional Wreck Ahead!

Good Morning Bleeps.

I don't know where to start today, I am completely and utterly hacked off. Yesterday I told you about my great day (the previous day) and how I was able to do lots around the house without feeling tired at all. Well, let me tell you that what the Universe gave me with one hand, it punched me right in the smacker with the other. Yesterday was AWFUL.

I woke up feeling OK, nothing out of the ordinary just the usual feelings of fatigue and some tingling. Then as the morning went on I realised that I was starting to lose feeling in my leg. My left thigh had gone completely numb. It is not unusual for me to have heavy legs with what feels like growing pains (x100) but this was different, something new. I DON'T WANT ANYTHING ELSE NEW! Do you hear me Universe? Stop taking the piss.

Emotionally I was a wreck. My friend Gill phoned to tell me a funny story about her other half. He had told her that her car wasn't reversing and that the clutch had gone. She called the RAC to get help but the mechanic couldn't find anything wrong with the car. It turned out that he had been trying to reverse her car by putting it in 6th gear, what a numpty (he won't live that down for a while). Her story made me chuckle but then as soon as she asked the fatal words of "how are you today", I burst into tears. She listened patiently (as she always does) offering her support but boy did I feel like a pathetic idiot when I got off the phone, why was I letting this thing get to me so much?

I decided to shake it off, take a shower and get over myself. So I had a numb leg, so what, right? No biggie, I can deal with it especially when there are others out there dealing with a lot worse. Man up! I couldn't be bothered to do make-up, style my hair or even shave my legs (not like me at all) so it was sweatpants and a ponytail.

I came downstairs to a phone call from my Mum. More tears. Really? REALLY Karen? For goodness sake woman, why was I not able to keep a lid on my emotions? What the heck? Who was this whack job? MS: 2 - Karen: 0.

I made myself another cup of coffee (because on top of everything I am trying to lose the 10lbs I have put on from comfort eating and so have put myself on a very unhealthy coffee only diet) and tried to shake it off. I faffed around on Twitter (which I have a sudden addiction to) and FaceBook and then my lovely sister called. BAM, round three of crying like a baby. It was starting to get embarrassing now. Seriously chick, pull yourself together. MS: 3 - Karen: 0.

OK that was it, I was all cried out. I was exhausted from it all. I decided to say FUMS, you are not going to beat me.  Was it wine o'clock yet?

I had a diversion in the afternoon when the plumber arrived to fix our downstairs loo. He hadn't been here long when all of a sudden the house was filled a terrible smell. When I went down to investigate he told me how had needed to remove the whole toilet to get to the pipes, the smell of drains was disgusting. Suddenly the smell in the house was matching how I was feeling. Like sh!t.

Phil arrived home and I was telling him about the plumbing and I guess he sensed that all was not well and asked "bad day?" Yup you've guessed it, MORE tears. I broke down for the forth time in one day, pathetic. I told him that I feel like a broken record and that people will stop wanting to call me or talk to me if all I do is cry.

He reassured me, hugged me and was his usual supportive self, rubbing my back as I cried like a fool. I poured myself a rather large glass of wine (sod the liver) and started to relax, the rest of the evening was tear free (probably run out).

This morning I have cried some more. Luckily Phil has left for work but I apologised to Kassidy for being so emotional. She is so supportive and such a sweetheart and she said "Mum, you only got diagnosed in December, this is all still very new. I would think you were weird if you wasn't upset now and then".  She went on to say that this was a life changing thing so of course I will have down days. Down days? I feel like I have had down WEEKS.

I feel angry, resentful and basically pissed of with the world. I really need to find a way to deal with this better, some days I think I am doing really well and then like a wave it hits me and I am back at square one. I am told that this is all part of the grieving process and as trained counsellor I can intellectualise it and recognise it but I don't want to feel it any more.

Maybe I am swinging between the anger, denial and sadness parts of the grieving process. I sure as heck am nowhere near acceptance. I think I will ignore the phone today, it isn't fair to friends and family to keep burdening them with this. It is ME that has MS, not them.

So I guess in a nutshell, MS is kicking my emotional bum at the moment but even though I may be down, I am not OUT.

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?

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