Uneasy truce? Oh no sir!

Recently I wrote how I had realised that MS had become my excuse for not doing things that before diagnoses I would have done. It was a tale of regret and grieving.
But yesterday I discovered that MS is actually sometimes (And I only mean the once in a while, count your blessings for small mercies sometimes) good for something.
It is absolutely brilliant at giving you an instant reason for some random, innocuous and not-serious health complaint that may strike.
Take the common garden cold for example. Pre-diagnoses days, I would have sniffed my way limply into the chemist, bought a mountain of flu remedies and tissues and felt extremely sorry for myself while dabbing vaseline onto the end of my sore and red snout.
I would have moaned to anyone who would listen that this wasn't just a cold - this was flu and they had better feel sorry for me.
Now, when a cold strikes my reaction is this: "Bloody MS - I wouldn't have caught this cold if it wasn't for the MS." And I find myself angrily fighting the cold blaming it all on my old friend MS (which on this occasion hasn't actually done anything wrong). But it feels so good to remind my monster that I hate it and it can think again if it even thinks that its home in me is going to be anything but a dark, cold place to be.
I'll give you another example. Recently I've been suffering awful achy knees. I've been moaning about it constantly.
Have I been to the GP to discover the reason? No.
Do I tell myself that it is probably an age-related thing? No.
Does the thought that as a teenager I managed to strain the ligaments in both knees on separate occasions ending up on crutches both times and it is probably the niggling of these old injuries? No of course not.
What I have done though, is during my moaning about how sore my knees feel is say: "Bloody MS - it's got to be something to do with that." Maybe it is, maybe it isn't.
But yet again, I remind my MS monster that I seriously am not a good place to be setting up camp and that it needs to change locations fast.
It's quite liberating to realise that for everything that goes wrong now, I have a fantastic reason to shout loudly into the face of MS that it needs to move on now, there's nothing to see here.
And it is even better to remind my MS monster that we do not have an uneasy truce. Oh no sir! There is no truce at all. In fact there is only one four word sentence that sums up our current situation.
We are at war.

Fighting a losing battle

Realising I am fighting a losing battle has never been a strong point of mine. But my MS monster has other ideas and is letting me know in no uncertain terms that sometimes I need to stop fighting and give up.
It's the old fatigue again.
It's finally won. I can't push on anymore.
My shifts in work are pretty insane with the level of intensity needed and for the last few weeks battling through shifts I've noticed a couple of worrying things.
Weird little black floating spots cross my vision. I keep seeing spiders climbing on me in my peripheral vision which has me panic hunting the imaginary beastie. Little electric shocks run down my arms into my hands. Driving home is an effort of untold proportions in order to keep my concentration on the job in hand. Most days, the 15 minute drive home is a total blur when I finally fall through the door and onto the sofa.
I won't lie - it's worrying me a bit.
Recently I attended a newly diagnosed with MS workshop. I can't say I was looking forward to it much. And my fears weren't without foundation. Seeing people with MS which was affecting their daily lives in a really negative way in terms of their balance, their mobility, their swallowing, their memory was quite breath-taking and got me wondering when it was going to get me like that.
I sound selfish - I probably am. But quite frankly, this is my MS and I'll deal with it how I want to. (All said in a very whiney and snotty little voice.)
Everyone there seemed to be dealing with their demon in their own way. Some seemed - on the face of it at least - positive and hopeful. Some seemed desperate for some kind of cure. Some seemed defeated while others seemed like they were taking on the fight of their lives.
The monster was lurking in every one of the MSers there. The stand out observation for me was not one person there could understand what the hell they had done to deserve this thing intruding into their lives.
But back to my current woes that fatigue is becoming more and more apparent in my life. At the MS day I learned there are such things as fatigue management workshops happening locally - something that I fully intend to embrace when the chance comes up. I'll let you know how I get on.
Onto other things, I've just had an invite to another neurology appointment - wonder if it will involve another MRI scan? I'm quite interested to see if the Big A treatment has prevented any new lesions forming since I had the first round in November.
So I'll sign off now - I don't feel too positive at the moment and for that I apologise. Hopefully when I say hello next time, I'll be feeling a bit more myself. Until then, I'll keep my upper lip stiff, my chin held up high and the very best of British attitude to stop me from falling apart.

My MS excuse

It's been a while since I updated my blog. Since my return to work, my life seems to be one long roller coaster of getting up, work, going to bed, getting up, work, going to bed. And so the cycle continues.
My energy levels are at an all time low and I am permanently tired.
But it got me thinking.
Until June 2011, I didn't know I had MS. I felt tired all the time, but I kept going because I didn't know it wasn't just tiredness but actually MS fatigue.
In my pre-diagnoses days when I obviously had MS but didn't know I had it, I didn't allow myself to stop. I maintained a very active social life. I worked extra shifts. Sometimes on a Friday night, I'd volunteer to do the overnight shift after a full day of working using all of Saturday to catch up on my sleep and then by 8pm, I'd be on the bus to town to meet my friends and dance the night away stumbling through the door at about 3am.
It seems like a dream when I think about it now - I was totally wiped out on a permanent basis but I kept going. I thought that everyone got tired like me and that it was completely normal.
But now I have a reason for why I feel so half-baked all the time. Why I feel like I am functioning at under 100% the majority of my waking hours.
And suddenly it has become a reason... no, that's the wrong word. It's become an excuse for me to avoid social occasions. It's become an excuse to opt out of things that I would have forced myself to do pre-diagnoses.
This realisation has made me think that although it is a relief to have a diagnoses about the 'physical' symptoms of MS, it has actually had a really negative effect on my outlook on whether I can do something or not.
I notice my automatic reaction to the possibility of a weekend away or a night out or a shopping trip is always to think: "I'll be too tired - I have MS you know."
Sometimes, I'll speak the words aloud. Other times I'll agree to go to the said event and then pull out the day before citing those reasons of fatigue. Occasionally I'll go - have a blast and feel good I did something even if it did leave me feeling too wiped out to carry my handbag up the stairs on my way to bed.
On analysing my reaction to this realisation that MS has become my fail-safe excuse to avoid doing things (I mean who is really going to argue with me that I won't feel awful if I do something they want me to do - mentioning my old friend MS has people recoiling in a horror of not understanding and bringing to life that at-the-moment hidden thing I have?) I am experiencing a whole range of emotions.
I feel cross and narky at my own sappiness.
I feel slightly miffed that I have let MS do this to me - I could do things before so why not now?!
I feel guilty - guilty for my loss of the experience and guilty for not sharing that experience with people who wanted me there. Guilty for letting MS do this to me. Just plain old guilty.
I just feel ever so sad and mourn that life I've lost and that part of me that would put aside my own body weaknesses to embrace life.
I suddenly feel like I have allowed MS to change me. Instead of recognising I have MS and getting on with life, I have unwittingly let it creep into my very being and have let it alter who I am. And this despite my efforts that I would not allow this to happen.
Will this realisation change my outlook? I hope so.

Sick of the sick

Being newly diagnosed with MS brings a huge head rush of emotions which need to be dealt with and over the last nine months I think I have gone through the seven stages of grief at being told this monster is now living and thriving in my body like some sort of parasitic alien.

I’ve clumsily dealt with:

1.       Shock and denial

2.       Pain and guilt

3.       Anger and bargaining

4.       Depression, reflection, loneliness

5.       The upward turn

6.       Reconstruction and working through

7.       Acceptance and hope

It all sounds very American and therapy-like but it is exactly what I’ve been (and still occasionally find myself) dealing with to get my head around the fact that just as I live and breathe, so MS is part of me (despite my absolute hatred for it).

But I’ve now found that I have become... well to put it bluntly... a bit of an old bag when anyone close to me starts moaning that they’re not feeling very well.

Be it a few little sniffles to a full on bout of flu, I simply cannot find it in me to be all that sympathetic.

To be fair, even before my old friend MS made itself known to me, I kind of stood in the ‘tough love’ category of caring for my nearest and dearest when they were struck down with a bug. I was pretty good for a day or two, making the right sympathetic noises, making caring cups of tea and chicken soup and even resorted to forcing the patient to rest while I did everything. However this soft side of me never ever lasted longer than 48 hours and then I would start demanding they got up, had a wash and went for a walk to get some fresh air.

But now I simply cannot stand listening to anyone moaning they feel under the weather.

If someone starts blowing their nose noisily into a tissue, I feel disgusted by them.

If someone complains about having a headache, I throw some paracetamol at them.

If someone dares mention that they feel cold and shivery, I snap grouchily “Put a jumper on then!”

I’ve lost patience with the patients.

And it’s actually not a very nice thing.

All they want is some sympathetic words, someone to look after them for a few days, for the heating to be turned up... All I want is for them to go away and don’t come back until they have stopped whinging.

I just can stop myself from thinking: “YOU’VE NO IDEA WHAT FEELING ROUGH IS!”

I can’t bring myself to empathise with them because in truth I am jealous that all they’ve got is a cold. That all they’ve got is a temperature. That all they’ve got is a cough. And that in a few days or weeks time they will be completely well again.

Because this is all I want – to be completely well again. MS has other ideas. 

Back to the grind

I have just completed my first week back in work after 14 months of maternity leave (with a bit of annual leave thrown in).
This time off has been pretty life changing.

1. I had a beautiful baby boy who makes me laugh every day and who I love so much.
2. I got told all these weird things that had been happening to my body was down to MS.
3. I had some treatment which could halt MS in its tracks, for a little while at least.

I'm sure you can imagine there has been some dark times, magical times and hopeful and hopeless times that I've worked my head around.

Sometimes when I look back at this time, I cannot actually believe these things have happened to me - and it's a bit of a head spinner.

So on my return to work as a journalist in a busy newsroom, I was expecting... I don't know, something *different* I suppose. But I've been amazed that actually nothing seems to have happened.

There are a few new faces, the old faces are, well, older looking, and the prices in the canteen have increased, but in essence everything is just the same.

It's weird. 

People in the office are still complaining and moaning about the same things they were complaining and moaning about 14 months ago. And the answers they get to the questions they ask about their complaints and moans are the same.

In equal measures I find it comforting and depressing.

Comforting because in this MS world of uncertainty, there is one huge solid I can rely on. Something that I can use to define and identify who I am.

Yes, I'm now a mum. And yes, I'm now a wife.

But my career and what I do is something that is totally, utterly and completely me.

It frightens me, that if I get a relapse which affects my arms and hands, I may not be able to type and therefore will see part, a huge part, of my identity (as a print journalist) get taken away from me by MS.

It scares me, that if I get a relapse which affects my legs and balance, my colleagues will start to look at me differently.

At the moment, I have a reputation as the 'office noise' which I am happy to have. I have a reputation as someone who is pretty feisty, good fun but also deadly serious and passionate about my work and if I do say so myself, someone who is bloody good at their job. 

I don't want to be known as that 'girl in the newsroom with MS'.

So my old friend MS is taking a back seat in my priorities. It can sit where it is quietly and without making a fuss or it can take a run and jump because I'm fed up of it taking over my life and thoughts.

I feel like I've got some certainty back with my return to work and although I never thought I would say it... it's great to be back (even if nothing there changes)!

Stressing out

I'd love to write something that will be intriguing, inspiring and revolutionary in the fight against MS but my old friend has been so quiet lately that I'm starting to wonder if it has gone into hibernation.
It's a good thing. I've been feeling happy, healthy and 'normal' and it is great. Long may it continue.
However, I fear that things may be about to alter the status quo with my impending return to the land of work after a year of maternity leave.
My job is stressful, full-on and can leave me buzzing with negative (sometimes positive) thoughts I find hard to banish when I am trying to sleep.
Stress is apparently a trigger for my old friend to wake up and shout out: "Coming out to play?" so I am feeling a little apprehensive.
I am determined to be one of those calm, sandal-wearing, chilled out souls when I get back to the grind but I know this dream will be laughed and mocked at by my alter-ego working self. I'm determined to do some kind of class like pilates or yoga but after a 10 hour shift I think this will also be something that is sidelined for an hour slobbing on the sofa in front of the box grunting conversation with my long-suffering husband.
So who knows what is going to happen when I get back to the office. Things will either be A-OK or my old friend might decide to join in the fun and make life hard. I'll let you know.

Yawn

Isn't it great when you wake up from what should have been a lovely refreshing nine hours of deep sleep only to feel absolutely shattered, minus any energy and engulfed with a general feeling of fed up-ness?
My old friend MS has decided that after the miracle of the baby sleeping straight through for the last six nights that I have got too used to feeling raring to go on waking and that it is definitely time for it to remind me that it is boss and the best way to do that would be to give me a delicious dose of fatigue. Brilliant.
Now I know many with MS already know exactly how I feel but for those lucky enough not to realise what fatigue is, let me explain.

• I don't feel tired - I feel absolutely and utterly exhausted.
• I don't feel a bit weary - I feel like I've been trekking a mountain for the last three days. Without a break.
• I don't feel like I need to put my feet up - I feel like my legs will collapse under me if I stand.
• I don't feel like I can't be bothered today - I feel like if I did, I would die.
• I don't feel like I've had a late night with a bottle of wine - I feel like I was beaten around the head with the bottle and then kicked in the face and forced to stay awake for three nights straight.
• I don't feel like going up the steps is a drag - I feel like the steps are so steep I will need a pulley to help me.

The thing is with this fatigue is that when you tell people without MS you feel tired, people without MS relate it to when they feel tired... but is it SO different.
In fact it is so different that I am getting too tired to explain any more.