First Holiday of the Year!

My last post left the story at the point of me taking some real time off work and receiving the brain scan results.  I felt exhausted to the point where it was impossible to look at the computer screen or read a book, my vision was so blurred.  During this time I started to experience new symptoms, like my eyes bouncing up and down and feeling like the room wouldn't keep still, random nausea that would send me running to the toilet to heave for ten minutes, buzzing in my legs which would last hours at a time and would also come and go intermittently, like there was someone holding a mobile telephone on vibrate against my left foot - but only near the outer toes!  How strange!

It seemed like there was a new symptom every day; dry and stinging eyes, a dry mouth (I was always having to lick my lips), neuropathic sharp pain in my legs, the need to urinate constantly, and the newest - difficulty swallowing.  I have had this for about the last three weeks but it has now left me with a throat infection - which I'm pretty sure has been due to a piece of food which I wasn't able to swallow properly getting stuck in my throat and causing infection.  MS can cause weakness of the throat and mouth muscles.

On Saturday 28th September I went on holiday to Greece.  Bear and I had paid over 1.5k for this holiday, during which we would attend one of my close friend's wedding, so even though we were very close to calling it off, we went away under the pretence that I would be doing no different than if I was at home.  And the fact that it was All Inclusive meant that neither of us had to cook at all.  Happy days!  All in all I had mostly good days, although there were more moments of intermittent bad symptoms than I had suffered at any point earlier.  For example, the buzzing in my legs was constant 24 hours a day, my vision was so bad that I couldn't read my book for the first three days of my holiday, my balance was poor and my friends noticed it when i walked towards the buffet, and my speech was constantly slurred making my ftriends ask whether I had hit the margaritas before midday!

It's incredibly difficult to be socialble when it's hard to hear and subsequently understand people, especially when they are talking over one another.  When I'm having a bad day I find concentrating on even simple things difficult, like having a one-on-one conversation, but then put me in a situation where there are lots of people all talking at once and I just back away and I am quiet because I can't comprehend and respond fast enough to join in.  It's daunting and exhausting all at the same time.  This is why on the night of one of my closest friends wedding, at which I was a bridesmaid, I had to leave early.  My mouth wouldn't form the words that my brain was delayed in creating, and I was so exhausted that it wasn't enjoyable for me or anyone else who was around me.  What were my options?  Sit there and outwardly appear hostile and difficult, refusing to take part in the entertainment because I'm "tired" - there becomes a point where people get fed up of you using that as a reason no matter how true it is - or to retire, even if it involves leaving people bereft because I'm not there to join in.  At the end of the day, it is difficult for friends to watch a loved one act so unlike they usually do.  Normally I'm the life and soul of the party but these days I'm the first to call it a night, mentally putting my pyjamas on, the milk bottles on the doorstep and climbing in to bed by 10pm.

The Story So Far - Part Two: No Man's Land

No Man's Land

After being discharged from Hospital on the Sunday I came back home with Bear for complete relaxation and recuperation.  The Consultant advised that I should take sick leave from work for at least the beginning of the week, which, for a change, I listened to!  Bear was great; fetching me cups of tea and making dinner, even though he had to go to work himself!  During this period the only symptoms I was having were problems with vision (everything was easily blurred and I had to really concentrate to focus, however putting my glasses on helped quite a bit), my balance was poor and my walking was very slow and deliberate.  I had to really concentrate on putting one foot in front of the other and I felt like my legs didn't belong to me - like I couldn't tell how much weight or pressure I was putting on them so I had to be careful.  The tingling that I had experienced earlier when in the hospital had started to ebb away and my concentration and mood were significantly improved.

By Thursday I was gagging to go back to work and have some semblance of normality in my life.  At work my colleagues were understanding and concerned, and I was open and honest about what was happening.  Although to be fair, I didn't really know what was happening myself - just that something wasn't right and there would be further investigations.  I have a great rapport with my senior colleagues and peers at work, I do my job well, and although I think some of them were guilty of thinking bad of me for taking such a large amount of time off, I think they understood when they saw me at work that Thursday and Friday that this wasn't a minor illness or over-exaggeration.  My boss, unbeknown to him that I had even been in hospital over the weekend, exclaimed loudly whilst I walked to the printer, "Is this the World's slowest walking competition?"  I saw the funny side, how could I not?  But I just couldn't walk any faster.  I shook when I got the milk out of the fridge to make a cup of coffee, I was holding on to desks as I walked by for balance, I had to squint at the computer screen (even with my glasses on) to see what I was typing, I couldn't hold my pen properly to write, my speech was slurred to the point where someone asked in a meeting if I had been drinking at lunchtime.  I found typing whilst listening to someone explain how a specific portion of code flowed through the system impossible.  This was the most worrying thing for me.  I'm constantly doing three things, never mind TWO, at once - I can't just watch TV, I have to be playing a card game on my iPod whilst also texting friends and flicking through a magazine.  I PRIDE myself on my ability to do two things at once - I did it at work ALL of the time.  So why did it sound like the person sitting next to me was speaking Vulcan whilst I was knocking out the simplest of requests by email?

I found that relaxing would temporarily take my symptoms away, and one minute I felt almost back to normal again and so would do something like clean the bathroom with a surge of energy, only to get half way through and collapse in a heap on the sofa unable to move.  Despite this my spirits were positive and I was sure that it was all still a big fuss about nothing still.  I wouldn't have been surprised if my GP or a consultant had suggested that I was just stressed and needed some time out - besides I hadn't had any proper time off from work since December 2012!

On the 17th September I had a brain scan, which I found out about purely by coincidence!  That day I had woken up feeling like someone had repeatedly been hitting me all over my body.  My skin felt bruised, my legs were so weak that even walking to the toilet was difficult, I had an awful headache and I couldn't see properly.  This was the first time that I experienced real vertigo.  Everything seemed unreal, like I was existing in a bubble and it just wouldn't stop moving!  All sounds were muffled and my brain wasn't registering what I was seeing straight away - there seemed to be a slight delay.  I had taken Valium before whilst admitted to hospital in 2011 for a severe panic attack and I felt similar.  Needless to say, I called work to explain and they were thankfully understanding.  Half an hour later I received a call from the Imaging Department at Charring Cross hospital to say that my appointment for a brain scan that day would have to be cancelled as the MRI hadn't switched on properly.  This was the first that I had heard about any brain scan!! I had received no letters, phone calls or emails!  The radiologist, although sympathetic and most probably not very surprised at the lack contact, said that if they had to re-arrange they would try and make it ASAP and before I went on holiday.  Deflated and angry at the obvious failings in NHS administration I expected not to receive a further appointment for months BUT the Radiologist called back and said that the MRI machine was now working and if I could still make it today that would be great! :)  I wasn't really in any state to go anywhere and the thought of getting on the tube from Ealing to Hammersmith made me want to cry, but I did it and I got there (with a very large Costa Coffee caramel latte in hand!).

Some people find MRIs scary.  I don't often get the opportunity to lie down and think of nothing (certainly not without feeling guilty about it!) so for me, being enclosed in a coffin like environment and having loud noises radiated through my ears didn't bother me in the slightest!  The concerned face of the Radiologist when she asked me if I had an appointment to see the Neurologist urgently did, though.  She knew something and when asked if she spotted anything told me that it would have to be confirmed by a Neurologist.  I was still hanging on so desperately to the hope that I would be shooed away and told to shake myself off and get on with it because it was just a little dose of stress.  But at that moment, I knew it wasn't.  I knew that the organ upon which I relied so heavily to make me ME had let me down in some way or another.  It hit me that I wasn't making it all up (irrationally I think we all worry that we are doing this, whether it's narcissism or self-preservation, I don't know) and then I started to get scared.  Surely she would have told me that 'everything looked OK and not to worry' if it had all been fine?  I decided that I needed to take action and be in control of something, so I went to the Outpatients Appointment department to check if I had any other tests or appointments booked in without my knowledge!  I did! Neurology Outpatients appointment on the 19th NOVEMBER!!!  But that was two months away!  Surely that wasn't right?  Didn't they know that there was something wrong with my brain?!?!  It takes a while to become rational in these situations and realise that:

a)  There might not actually be anything wrong - a worried Radiologist's face does not a tumour make;

b)  That there are probably thousands of people in the same boat - I'm no more special.

I struggled through the Friday at work and relished a weekend of relaxation and no plans.  The weekend came and went and although I managed to go to Ikea with Bear and pick up a few home furnishings I didn't get overly tired, mostly probably because I insisted that we sit down and drink coffee every hour or so!  On Monday, however, around 11am at work, the fatigue hit me like a punch in face, torso and legs all at the same time.  My brain swam and my eyes dilated.  I couldn't concentrate on what people were saying in meetings, I just stared in to space willing myself to concentrate and understand.  I felt humiliated and just glad that we didn't have clients with us that day.  I couldn't go on like this so I called my managers in to a meeting and explained how I felt and admitted that I was struggling.  they admitted that they could see that i was too.  We decided that it was time for me to take some time out and to use the time to try and find some answers from the Consultants.

That afternoon I called my GP who suggested that I see her the next morning where she could take some more bloods and she would try and chase up my brain scan results.  For the first time that all of this had been going on, I sobbed down the phone to her and I think she recognised my utter desperation and confusion.  I just wanted my life to go back to normal - why was this happening?!

At the time the waiting for results seemed worse than actually having the results - but I think this is only when you are still clutching to the naive insistent hope that you are going to be told that it's 'just stress'.