Keeping fit ... and rest too!

So, aside from everything MS related, my life is pretty hectic at the minute. Our wedding is less than five weeks away and while the majority of the organising is finished, there's still 'stuff' to be done!

As I write my intended is partying in Barcelona with a bevvy of his mates and I'm taking the chance to catch up on some rest and take it easy. It's no surprise to find that I'm holed up at my parents ... no better place to chill out.

But on a serious note, rest is something I have to take seriously. Fatigue is a symptom of MS that raises its head when you least expect, or need, it. With my own hen weekend starting on Friday and the honeymoon just over six weeks away I want to be in the best possible shape so that I can enjoy everything wedding related - and the big day itself of course :)

Thankfully, my feet are almost back to 100%. I have no difficulty walking at the minute and aside from some sensitivity they're behaving okay. I'm also going part-time at work on Monday which will be a real help in keeping any tiredness at bay.

I've also started working out at a gym. My instructor has helped devise a plan that allows me to keep off my feet for the majority of my 40 minute workout and I'm actually really enjoying the process. It's true that keeping fit is something everybody needs to consider in order to keep healthy but with MS playing a role in my life now, it's something I've decided to prioritise. After all, if I look after my body the best I can when it's well, there's a chance that I'll be better placed to keep on top of the MS in the long-term too.

Not so scary MS guy

So, today was the all-important MS specialist appointment. I was a bit anxious this morning, couldn't really eat (that'll help the diet!), felt on edge etc etc. For some unknown reason I had Mr MS guy boxed away in the scary corner, someone to be feared - but I shouldn't have worried. Yes, he was to-the-point and precise but his straightforward approach was exactly what I wanted - no bullsh**!

Again, there wasn't much more to add to what we already knew. But before we start looking at the drug options I have to have a lumbar puncture done - that's that horrible procedure where they stick a needle into my spinal cord and remove some fluid. That fluid will hold the definite, definite information they need to allow me to go a waiting list for the medication.

It's not something I'm looking forward to, but I understand the need too. Basically the drugs cost money - and whether we like it or not, money makes the world go round - so before they start anyone on them they have to be double sure that there's a need. Thankfully the puncture won't be done until after the wedding - which is now just over five weeks away - eek!

On that note, some of my family and friends took me out for dinner at the weekend, sort of a pre-hen hen do! Was great fun and I wore heels for the first time in twelve weeks - and while my feet burned just a tad, they were bearable - proof that the 'stupid feet' are getting better. Made me nice and tall again too - I've missed height :)

Positive thinking is key

In a previous post I mentioned that my attitude during all of my investigations, consequent diagnosis and every day thereafter, has been generally very positive. That's just my way.

From day one, I have never wanted the sympathy or the pity looks, but most importantly, I fully believe that your attitude can have a massive impact on how you certain situations affect your life. It would have been the easy option to feel sorry for myself, put my head in the sand and talk to no-one. Instead, I did the very opposite.

Everyone who knows me, knows I have MS. I find it helps to be open about it, then there's no lies to tell when I'm off to the hospital to see the consultant, there's no pretending to be OK when the pain is excruciating, and most importantly, my family and friends know where I'm coming from.

To say they have been supportive over the last ten months is an understatement. Some just let me rant, allowing me to get whatever it is off my chest, others listen patiently while I try desperately to explain what it is I feel on any particular day, and then there are those who allow me a weak moment, a few tears at the seeming injustice of it all.

But all of them boost me up, allow me to be me, regardless of the MS, and for that I am extremely lucky.

The fork in the road

So, I had my appointment with the neurologist on Wednesday and he didn''t really tell me anything I didn't already know. That can sometimes be the problem with being well-informed. The internet is such a wealth of information that I've almost diagnosed myself before I get there. BUT, that said, it does help to go with some idea of what the professionals are going to say - it means nothing is too much of a shock.

Anyway, he confirmed that the sensory problems in my feet were officially a relapse. He also seemed relieved to know that my appointment with his colleague, who specialises in MS, was soon (next Monday, 25th). I suppose it makes sense that I have more specialised care - and since my neurologist seems to think that my next route is disease-modifying drugs (DMD's) - he is more than happy for me to have someone who knows more about the condition looking after me.

The news about the DMD's, is again, not unexpected. The implications of them however are certainly hard to take in. More specifically, the information that you are advised not to conceive while taking them (because there has been no research done to tell what damage the drugs may have on the baby). Obviously I am at an age where having a family is becoming a distinct possibility - especially given that I am getting married in less than seven weeks.

So now, we face a dilemma. Do I start the drugs asap and give them a chance to get working before I embark on a family, then come off them in a few years time to have children.
Or, do we decide to have our family straight away, and start the drugs in a few years time, never to come off them again.

In my mind there is no right answer. I have thought continuously about it since Wednesday, and there is never a solid reason to go with one option or the other. The only conclusion I have come to is simple - we want a family, it's just the 'when' part me and J need to figure out.

These feet were made for walking

In addition to the continence advice, my neurologist also sent me for another MRI scan. This was completed in Sept 2009, nine months after my original scan.

Before it was completed he saw me at an outpatients clinic and seemed pleased with how I was doing. In fact, his words were simple, “If I hadn’t seen your MRI scan, I would be convinced that you were doing well, so my advice would be for you to go off, enjoy your life, plan your wedding and I’ll see you at the start of 2010.”

But, just a week or so after the MRI scan I got an unexpected appointment to go in and see him again. Naturally, this worried me. And I was right to be worried. He immediately told my fiancé and I that the MRI showed new areas of demyelination. For these to have occurred in less than nine months was a scary prospect.

So a new plan of action has been taken and I am now being referred to an MS specialist at the end of this month. Since then things have taken a downward turn.

My attitude has not changed - I’ll talk about that at a later stage - but I have suffered a few setbacks. The major one involves my feet. At the end of October they started to get a bit numb on the outside edges and it was initially so slight that I hardly even noticed, if anything my shoes sort of felt tight. But then it was very obvious.

I remember having a bit of a cry to myself, but it was more to do with what I thought was coming up ahead than the actual numbness itself. Over the course of a few weeks they did get worse and by the time Christmas came around, I could barely walk.

The numbness started to be intermingled with a burning sensation, which would then give way to a series of pins and needles. It’s a weird feeling, hard to describe and I almost find that what I’ve written doesn’t quite do it justice.

There are also moments when I touch my feet and they are ice-cold, but I can’t feel it. Then when they heat up, they are lukewarm to the touch but absolutely burning inside. At one stage the pins and needles crept right up my foot into my ankle, and the pain was hard to bear. I started hobbling about on my heels, desperately trying to keep the weight off the foot to try and minimise the pain.

It was then that I spent a whole week laid up, moving only to use the bathroom and little else.
To say I found this time hard is an understatement. It was very isolating and my mood dropped considerably. Family and friends were busy getting prepared for Christmas and I know if I had asked them to visit they would have done so but I felt guilty taking them away from busy schedules.

In the end, I made myself get dressed up and join people for dinner and a few drinks here and there. I always drove, or was driven, rarely drank alcohol and was always home before midnight - but the company and atmosphere in itself was enough to get my mood up.

By the New Year the pain had moved from an unbearable grade 10 to a more manageable grade 3. That’s where I am today.

Going every five minutes ...

Since then I have been placed under the care of a new neurologist. His approach has been much better - and because he wanted a thorough look at me, he started all of the tests from scratch.
However, in the initial stages he didn’t seem too concerned, mainly because I had no new sypmtoms as such. But he did refer me to a continence nurse which was a major help.

Those with MS will understand when I say going to the bathroom was starting to take over my life. I didn’t like going anywhere if I didn’t know where one was and long journeys had started to become a real difficulty. This is because I was going practically every hour, if not more.

Looking back, I had spoken to my GP about the frequency with which I went to the toilet, but he fobbed me off saying everyone was different and I would get used to it. But I now know that this is actually a sign of MS.

Thankfully, my appointment with the nurse has changed how I live my life. She has given me a prescribed drug that regulates the frequency with which I need to go, and to say it has given me back my freedom is not overstating the situation.

Emotionally, the bathroom issues were one of the hardest to deal with. I used to be embarrassed that I was running to the toilet so often and became paranoid that everyone was watching me go all the time.

It was even consuming me so much that my upcoming wedding day started to look like it was going to be taken over with me running to the toilet in my gorgeous gown - and it wasn’t a prospect I was looking forward too. Now, with the tablets working really well, it’s a problem I’m no longer worried about!

Getting some help

Thankfully, my uncle is a doctor - a retired one but someone who knows what he’s talking about. After calling my parents and telling them the news, he was my next point of reference. And was amazing.

Immediately, when I said the neurologist was vague, he scorned, “He was just too scared to tell you the news properly. That’s what these people are like. He’s only flown in to cover a back-log, and he has no vested interest in your long term health.”

Straight away he started thinking positively. His friend and colleague works closely with MS patients and he believes fully in the treatment of Hyperbaric Oxygen Treatment (HBOT). This sort of treatment is a controversial one in the land of MS, some patients feels it gives them a boost, others believe it does no good whatsoever.

It basicially involves sitting in a chamber (not unlike those used to help divers who fall victim to the BENDS), being decompressed to 16, 24 or 32 feet, and once the chamber is decompressed, breathing in pure oxygen through a mask.

The idea is that the decompression allows oxygen to get into the system more effectively and subsequently helps repair the nerve damage in the brain that causes MS. In my mind, there was no question about whether or not I would give it a try - it is simply pure oxygen, and even if it does me no good, it certainly won’t harm me either.

In the immediate six weeks following the inital tentative MS diagnosis I undertook 20 hours of oxygen treatment. Since then, I have tried to get at least two hours of HBOT every month, sometimes four.

Meanwhile, I asked my GP to refer me to see a more permanent neurologist based in my Trust. Going back to see the initial doctor was simply not an option.

“Is it MS? Maybe. Maybe not.”

These early posts are a background - getting to where I am today - and follow on from previous posts.

I was called back to see my neurologist - someone drafted in by my local health trust to plug the gap in neurology services. As such, he only came to the city during weekends and my first proper appointment with him was in April 2009.

Because it was a Saturday, my other half (from here on in, called J) was lazing about. He had been up early for work all week and I insisted that he stay at home. This is a reflection on just how sure I was that nothing was wrong. But when I sat in front of my neurologist, he talked around the results before tentatively coming out with, “There’s a chance that you have MS.”

As a journalist I had interviewed MS patients before, I knew what it meant and I remember switching off a bit as he continued the conversation. He was very vague. “Is it MS? Maybe. Maybe not.” But he was very clear that my MRI scan had showed up sections of demyelination in my brain - a sign of the condition.

The rest of the conversation seemed to fly by. He told me to go home, live my life and see what happened. In fact, his very words were, “Come back and see me if something happens. You know, if your foot falls off or whatever.” On reflection, his manner with me was disgraceful. I can only hope that anyone else who has the unfortunate circumstance of seeing him after me is treated with a bit more dignity. That he told a young woman, with her whole life in front of her, news with such massive consequences, and play it down so off-hand, is beyond belief.

But, there was nothing I could do but drive home and ponder the future. When I walked in the front door, my fiancé took one look at me and I burst into tears. In the few seconds it took for me to get out exactly what the consultant had I said, I think J had me dead and buried.

In all of this situation, that’s something I hold close. I was not given a death sentence.

Investigations begin

Visiting my doctor was not very helpful. Rather than focus on what I was telling him, he seemed intent on finding out if I was depressed or not. I suppose it didn’t help matters that I was sat in front of him, near breaking point and unable to voice my real concerns.

But the second collapse had really shook me up. And while I have real empathy for anyone who suffers from the horrors of depression, that wasn’t what was wrong with me.
Eventually he was convinced that I needed some further help and/or investigations done.
So, I was pencilled in for a neurology appointment.

Again, the doctor wasn’t the most helpful - which is becoming a recurring theme - but he did decide to send me off for an MRI scan.

Given that the scan wasn’t completed until January of 2009 - some six months after the second collapse - I had honestly put all thoughts of being sick to the back of my mind. Apart from feeling tired and few headaches here and there, I felt fine.

Also, in October 2008 my darling boyfriend proposed, and my thoughts had been taken over by wedding preparations.
But when the MRI scan came round it did make me think - what if there is something wrong?

Then, the women operating the MRI explained that I would be in the tunnel for around 40 minutes, with four seperate scans being taken. I counted out the scans and was relieved it was over.

However, when I was taken out she explained that I actually needed two more scans done. It worried me that this was in addition to the usual procedure - and I did wonder if there was something amiss that she felt was worth investigating further.

But told myself that if anything was REALLY amiss then my neurologist would be duty bound to tell me asap - with nothing forthcoming from him, I put my head down and got on with organising my wedding.

My feet just gave way beneath me

To make sense of where I am now, it makes sense to give some background.

I firstly collapsed at work. My feet just seemed to give way and one minute I was chatting to a colleague, the next I was on the floor. I’m not sure who was more taken aback, me or her. Once I had gotten over the mortification of collapsing in the middle of a busy news office, my boss demanded I go straight home and take a few days off. But if truth be told I felt fine seconds after I fell.

However, I had just started a new role at work, my duties were increasing by the day and I did feel exhausted. Being sensible, I took his advice and spent a few days at home making the most of being pampered. Then just a few weeks later, with work getting busier and me taking little rest, I found myself at breaking point.

I spoke to my boss again and he apologised for my workload getting beyond anyone human. As such, he told me to take it easy the next day, have a lie in and meander into work once I was up and ready. Taking him at his word I slept until I woke and decided to treat my boyfriend and I to a homemade breakfast of pancakes and syrup. And then, standing at the cooker, in charge of flipping over a pancake, I fell to the floor again. No warning, nothing.

I was literally standing there one minute and my other half was picking me up off the floor the next. It was an experience I wouldn’t like to repeat in a hurry. My abiding memory of the day was him panicking, saying over and over, “What happened?” and me unable to answer. I just couldn’t put into words the way I felt.

But I knew this, I had to get some answers.

And so it starts ...

As someone who writes for a living - in my capacity as a journalist for a local newspaper - I have toyed with the idea of setting up a blog many times. In fact, a few years ago I even contributed to one as my colleagues and I attempted to lose a few lbs after Christmas and we thought writing about our lapses into chocolate binges would help keep us away from the inevitable munchies.
Now, a few Christmases later - and probably only a few lbs lighter - I have finally bitten the bullet and decided to write a blog of my own. And it comes off the back of a more life-changing topic than losing weight.

Last year, in April 2009, I was referred to see a neurologist after I suffered from chronic headaches and collapsed a few times with little explanation. As an otherwise healthy 26 year old, I honestly thought my problems were down to stress at work and little else.
So, I was completely floored when he mentioned the possibility that I may in fact be suffering from Multiple Sclerosis.

A bigger blow he could not have thrown at me.

I’m hoping this blog gives me an outlet to vent my exasperations and rejoice in the good as I try and live my life in as positive a manner as possible - this is my account of a life coping with MS.