The Beast Vs The MonSter.

One of the hardest thing about MS is the lack of control. The unknown. As I've mentioned here before, I've a history of mental health problems. BPD to be precise. In the past, the BPD part of me, has always really struggled with uncertainties in life. Now, here this Beast has been thrust upon me, who can come and visit any time and wreck everything.
Every single plan I make, is made in the knowledge that MS has the capability, at any time to come along and quash it.

Everything from saying 'I'll Cook Tonight Honey' to 'Let's Go On Holiday Next Summer'.

There is the day to day fluctuations, one day I might wake and symptoms will feel relatively mild. I might be able to go out in the day AND the evening if I'm lucky. Another day, I might wake up and struggle to make it from bed to sofa.
You can just about get used to the day to day fluctuations by pacing yourself (a technique I practised in the Mindfulness sessions). I never over plan, I always under plan - then if it's a good day I'll see if I can make last minute plans.
Then there is the wider uncertainty of relapses. Looming on the horizon, like an axe swinging above my head ready to drop and cause damage any time. I am hoping this feeling will recede somewhat if I manage to go longer without a relapse on the Tysabri. But for now, it is there, like an ominous grey cloud on a hot summers day.

People with progressive MS often say they don't envy the unpredictability of relapse remitting MS. I can see what they mean. Although I personally do not envy those with progressive MS in the slightest.

I have my access course starting in September. I AM excited about it. But MS looms, threatening to destroy it. It's no different to having mental illness looming really. It's just that with mental illness gives more of an illusion of control, because you always hold this belief that somehow you have a choice in it, even though you damn well don't. But because it is 'of the mind' you seem to think the mind can somehow keep the control and sway the power in the direction it really wants. However experience has taught me over the years, that mental illness has access to the same licence as MS when it comes to being able to come along whenever it wants and disrupt life.

Don't get me wrong, I am happy 'n all. In fact, I am fucking surprised and how well I have coped with this MS lark. For the reasons above, the uncertainties, which before I have never quite coped with in life.
I think it was a mixture of being mentally strong enough at the point the diagnosis came along, and it being a real do or die situation. Everyone expected me to go totally off the rails, I expected I would if I'm honest. And I didn't.
Now that does point to a certain element of self control in the situation of mental illness. Maybe there is to some extent.......but it isn't anywhere near as simple as saying 'I am going to cope with this' and therefore coping with it. Sometimes you just can't no matter how hard you try. Sometimes you can.
Again, comparisons can be drawn here with MS. MS is out of my control, for the most part, but there are still things I can do to give my body the best chance of going longer without a relapse.
With both mental illness and MS, all you can do is arm yourself as much as possible against each Beast, but ultimately - when they decide they want to come out and play, that is what they do. You have to work hard to make sure you are as strong as you can be in order to try have the best possible outcome when they do decide to rear their ugly heads.

The mental health things I've been through in the past probably gave me better capabilities to deal with the MS. I was armed with years of advice from various therapists running through my head.
It wasn't easy, but it wasn't the crisis that it at one time, would have been.

So yes, MS is hard because, aside from the physical challenges, the uncertainty and unpredictability is a huge mental challenge. However it also brings many rewarding aspects to life. So much of my life has been changed by MS, but if you wrote them all out in a list I am pretty sure the good side would beat the bad. On the bad side would be 'I have Multiple Sclerosis', which granted is pretty damn crap. But on the good side would be a list much bigger in numbers than those four little words.

Maybe for my next post, I will compile said list ;)

Up In The Air

Last night I was thinking how that, at the moment, it really feels like everything in my life is coming together. This led me to think back to when did it fall apart to the point of needing to be put back together?

All the parts of my life had been thrown up in the air and were just there, floating about above me, banging in to each other, and just hovering with no particular order, rhyme, nor reason.

It's only on looking back now, with everything feeling like it has landed in to some kind of tangible shape, that I realise just how up in the air everything had been.

So when did that happen I started to think.

17th January 2010. I knew at the end of that year, that it had been a terrible twelve months, but I was still so in the midst of it all that I couldn't hold all of it together in one place.

On that date, I received the devastating and mind shattering news,  that a close friend has committed suicide. That is the first time I have written those words. She was my friend, and she took her own life. It still hurts and my eyes are prickled with the threat of tears as I write this now. I am sure I don't need to explain in any further detail, the emotional turmoil that followed in the massive shadow that is grief.

9th July 2010. Physical symptoms hit for the first time, in a big way and quite literally knocked me off my feet. I was given the life changing news that it might be M.S. That physical turmoil continued throughout the rest of the year, culminating in my diagnosis on 21st December.
As as result, the difficulties of 2010 did not, sadly, get left behind with a drunken chorus of Old Lang Syne, although not through want of trying!

2011 brought about a lot of changes and adjustments to life because of the M.S. I started a treatment (Copaxone), it didn't work. I moved house. I faced a redundancy and ill health retirement situation at work. I stopped doing the job I'd done for eight and a half years on 5th December, the same day that a family friend sadly lost his battle with M.S.

In two years, there had been two deaths, a life changing diagnosis, moving house and leaving my job. No wonder everything had felt up in the air for so long.

This year, 2012, I decided I needed some help in dealing with all of this, in order to stop the vicious cycle of thinking that I had gotten in to, before it spiralled in to my own self destruction.
I asked my doctor for help, perhaps a short course of CBT, I suggested. Sadly, a mental health history is akin to having a criminal record in such situations, and no help was available. As far as the NHS were concerned, here was someone with a history of mental health problems, but who was currently sane enough to be asking for help. Unfortunately funds do not stretch so far as to cover preventative measures.
Sink or swim time had come. I grabbed hold of the sides with both hands and started kicking fiercely, doing everything I could to be able to swim with the power of my own strength,
This is when I booked on to the mindfulness course, pursued ill health retirement (rather than redundancy); started a new treatment (Tysabri); began a numeracy course and applied for an Access [to Higher Education] course.
With all these things happening, my life is once again changing, but this time it is for the better.

The answer now as to where all this began, is glaringly obvious, but it is only now that it has all fallen in to place, that I can dare to look back and see just how difficult the last two years have been.

That was going to be the end of this post, right there. However, as I write this, I am sitting in a beer garden soaking up the sun and feeling full of hope and excitement for the future. I felt I had finished writing, put my iPod in and turned to face the sun.
The I realised, one massive part of my life is not mentioned in this post: The Boyfriend.
He isn't mentioned, and he should be. He isn't included in the above reflections because they were reflections on the bad in my life. However he should be mentioned now, because he has been there by my side, through all of it.
When we got together, in 2009, I was so ridiculously happy. I remember sitting on a bus and listening to 'One Day Like This' by Elbow, and just feeling so happy. The words reflected that happiness perfectly.
Since 2010 I have not listened to that song. I have heard it a few times in passing, but I have not really felt the words like I did on that bus in 2009.
Today, after writing most of this and listening to the iPod, I remembered that song. I put it on (repeat, of course) and for the first time in more than two years, I really felt the happiness again.

So, to The Boyfriend, if you read this, thank you for being there with me through the last two years and for still being here now. You make me just as happy as you did when we met, and here's to the next two years being focussed on us, just as the last two should have been.

I'll leave you with the lyrics of One Day Like This - by Elbow, as they really do sum up just how happy I feel right now, and how relieved I am to have shaken off the darkness that has been the last two years.

Drinking in the morning sun
Blinking in the morning sun
Shaking off the heavy one
Heavy like a loaded gun

What made me behave that way?
Using words I never say
I can only think it must be love
Oh, anyway, it's looking like a beautiful day

Someone tell me how I feel
It's silly wrong but vivid right
Oh, kiss me like the final meal
Yeah, kiss me like we die tonight

Cause holy cow, I love your eyes
And only now I see the light
Yeah, lying with me half-awake
Oh, anyway, it's looking like a beautiful day

When my face is chamois-creased
If you think I'll wink, I did
Laugh politely at repeats
Yeah, kiss me when my lips are thin

Cause holy cow, I love your eyes
And only now I see you like
Yeah, lying with me half-awake
Stumbling over what to say
Well, anyway, it's looking like a beautiful day

So throw those curtains wide!
One day like this a year'd see me right! 

Breathe through THIS? Are you SERIOUS?!

I don't know why I've come to a bit of a block with my blog. I need to get over it and so have just opened a new post and started typing with no intent other than posting a post.

So, what's been happening? Mindfulness is still going well, although I've not been practising it as much as I should, it is still a really useful tool for dealing with anything in life not just pain. I've been finding myself much happier just being, not having the constant need to block everything out. I never used to be happy sitting in silence, now I am quite comfortable to sit, soberly, with no music or television on and just exist and inhabit my body and mind as fully as I can. To start with when doing the Mindfulness, I really struggled with the concept of 'moving towards' the unpleasant. Surely not I thought? How on earth can concentrating on something like pain make it any better? For a couple of weeks I really couldn't get my head around this idea. Then it sort of fell in to place. By blocking out the unpleasant, we also inadvertently block out the pleasant. If I'm constantly trying to ignore a pain in my shoulders I am not just blocking out the pain in my shoulders but numbing myself to all bodily experiences. There is also the realisation that all pain is fluid, ever changing. When blocking out pain, we can't actually totally block it out as we are always aware that this pain exists. For example recently I've had a really bad neck that has been very painful indeed. By moving towards this pain I was constantly aware of when it changed and as such the times when it was better. Even though it was one of the worst pains I've experienced there were still moments where there was some relief from it and this in itself was a very pleasant experience. By trying to ignore the pain I would've, got up thinking 'I am in pain today' and then done everything I could to ignore the pain. By moving towards the pain, there were times when I was, for example, laying on the sofa and I realised the pain level had actually dropped quite significantly. So rather than it being 'Today I Hurt' it was 'Today I Hurt and......' Pain doesn't have to be solid, if we focus on it we soon realise the even smallest fluctuations in it.
 The same goes for mental pain, if I'm feeling like a bout of depression is coming on I usually try and resist it, yet by doing this I am also blocking out any nice feelings I might be having at the same time and also not looking at the reason for why the depression might be appearing. If I move towards the fact I'm not feeling so chipper, sometimes I can find a reason for it and as such work on that reason or even just by having found a reason begin to feel better. I think with depression I get so scared of NOT finding a reason and it being clinical (which in my experience is harder to move through) that I do everything I can not to think about it, but more often than not this just prolongs it with The Beast grumbling away in the back ground and I'm aware of its threat hanging over me. If I face up to it as soon as it appears, it no longer seems like The Beast, more of a small ant or something - it can be dealt with, doesn't have to be feared and also has its uses.

I haven't had to apply this thinking in a real depression situation as yet, and I am sure that when (if?!) I do, it will be much easier said that done. Let me tell you, with that neck pain it was very very difficult to breath through it and move towards it. There were points when I was thinking "f**k this hippy crap, this f**king hurts go away go away go AWAY" and I am sure I will have times where I have the same response to mental pain. Yet I can already see and feel the benefits of changing my way of thinking about myself, about others and about the world, so I shall continue to do this and practise it and hopefully get better at it with time.

A Spiritual Sunset

Today was a lovely sunny and warm day. It feels like a welcome change after the recent cold snap. I got up late and went to the mindfulness course. When I came out of the course I was just going to go to Sainsburys for some dinner ingredients, come home and do my usual evening thing (laptop, tv, dinner, music whatever). As I was cycling I found myself wanting to enjoy the outside and what was left of this lovely day. I diverted from the supermarket and went and sat by the river and had a bit of a late lunch. Then I cycled home and decided I would try and walk to the nearby ‘hill’. It’s really just a small mound where there used to be a castle, but for an area that is primarily flat it is a prime position for seeing the City from a height. The flatness of the whole area gives a special kind of view when you do get to a higher point, as far as you can see is flat in every direction, the massive expanse gives a great feeling of openness.

I quickly popped home to leave the bike and get my iPod. I walked to the bottom of the mound (it really doesn’t deserve to be referred to as a hill!) and had to sit down. The sunset looked good from where I was so I was happy with where I had got to be it for a break in the walk or my final destination. After a bit of a sit, I decided to go for it and attempt the mound. I made it to the top, and at that point I was thinking it deserved to be referred to as a mountain! I was quickly drawn to the sunset, a wide array of colours, orange, yellow and gold against a back drop of blues with spattering of grey whispers of cloud over the top.

I initially sat looking whilst listening to music. I then started to feel that I just wanted to be totally there in the experience and so removed the music and took in the scene as it completely was. Along with the gorgeous view there was the birds singing, a couple sat near to me laughing, car horns hooting in the rush hour, people going in and out of the restaurants and pubs below, a dog barking, the wind rushing by.

I decided it might be nice to try a bit of the mindfulness of breathing meditation practice. I looked over at the sunset, moon and clouds and started to become aware of my breathing. I was aware of the couple sat nearby and what I was most aware of was how I did not feel self-conscious. In the past, if I was sat near to two people laughing I would’ve been distracted by it. I would’ve been wondering if they were laughing at me even. Today, I was not thinking any of those things. I had not become comfortable in their presence by ignoring it, or by overthinking it, I was just aware. I then suddenly felt a kind of connection with them. I suddenly realised they feel the same as I do. They have pain, emotional and physical; we all have a human experience of life on the same planet. Of course we all have our own individual experiences within that, but we have that as a shared basis. Although I have always thought about others and always tried to appreciate others feelings and experiences, I’ve never actually felt it – if that makes sense.

I suddenly felt like everything was all a part of itself, all consumed by this common ground we quite literally walk on.

I looked over at the universities and no longer felt anger or jealousy or just the general sense of divide I usually feel being on the ‘town’ side of the age old ‘town and gown’ issue. I felt a part of it in my own way.

I’ve heard the phrase ‘we are as one’ so many times but never really thought about it much before. Today I really felt like I understood not just the meaning but the feeling of being as one.

A Mindful Body Scan

When I went to the Mindfulness course last Thursday, we were given a CD of a body scan to do at home. It had a short body scan and a long one. I'd done the short one on Sunday and it didn't really do a lot for me to be honest, mostly, I think, because I didn't like the guys voice, and you could hear him really breathing and moving saliva in his mouth - it was all a bit creepy.
Today, I decided I'd better check out the long body scan as this one is with a woman's voice so I hoped she'd be less weird sounding. I think for something like that you need a very neutral voice. 

I'd been having a bit of a bad day MS wise before I started it. Pretty tired, a bit dizzy, the same patch of headache that has been present on and off for the last few weeks, nerve pain between my shoulders rather bothersome and it spreading in to a burning sensation across my torso. I'd not got dressed all day, not showered, just hadn't felt the inclination to do so. I'd promised the boyfriend a cooked dinner and I was wondering how I'd manage to get it done. I'd got to the point in the day where I'd usually just give in and have a nap, probably for a couple hours and wake up only feeling marginally better. 

Do the body scan instead I thought, if only for the rest. I expected to fall asleep and at best it'd be a break from how I was feeling. Well, it certainly worked a lot better than I was ever imagining it could. The woman's voice was much better, not intrusive at all. I didn't fall asleep but I did go in to a very deeply relaxed state. At the end, I couldn't believe I'd been there for 45minutes. I got up feeling much better within myself, the burning sensation was no longer there and the shoulder pain was unrecognisable from its previous form. I slowly got myself up, following the instructions not to rush it. I immediately felt inclined to have a shower, get dressed and cook dinner. After 20minutes or so I noticed the headache had also gone. 

As I only started on the Mindfulness course a few days ago, I still haven't got to grips with the whole idea of it. I was finding it difficult to focus on each area of the body during the body scan. I am usually trying to do whatever I can to distract myself from various pains and weird sensations, so to go through the entire body focussing on each part seemed like a bit of an alien concept to me. I was starting to wonder how it could work, surely not focussing on pain is the best way to deal with it? But in this longer body scan session, it was explained that you are not only focussing on the different sensations in each part of the body, but realising that how they change. Not thinking of the body as a solid state but more fluid and ever changing. This, to me, does make sense as a good way to deal with pain.

I don't know what it was that helped me, it could have been simply laying in a darkened room for that time would've had the same affect although I am doubtful of that as it never has in the past. Whatever it was, I'll take it and I'll certainly be doing more of it!

Today I Was Mindful.

Mindfulness is something I've been vaguely aware of for some time. I've known people that have used it and found it helpful, I've had a book about it waiting to be read on my bookshelf for a few years. It was previously recommended to me for helping with depression. I never looked in to it further and my awareness remained vague. Since I've had M.S, it has been a term I've heard more and more and I've heard more and more positive stories from people who have used it. Last summer, I picked up a leaflet in a local pub advertising courses run at the local Buddhist Centre, in there they had a course on Mindfulness for dealing with pain and chronic illness. I toyed with the idea at the time, but the idea never quite grew in to action. 

A couple of weeks ago, I met a friend for lunch in the same pub and they had a new leaflet from the Buddhist Centre. I picked it up, stuffed it in my bag and forgot about it until the next morning when I came across it. I noticed the same course was running starting the next week, so without giving myself time to think and worry about it and talk myself out of it, I picked up the phone and booked it right away. 

The first session was today, and I have to say I am feeling very positive about it. The course is 8weeks, 2.5hours a week and one full day. This course in particular is based on the Breathworks approach and I think it is something that has real potential to help me. Today we covered primary and secondary suffering. The primary being the pain you feel in the body at that time, and the secondary being the resulting thoughts from it. The aim of the course is to accept the primary pain. I was pleased to hear that was the case and that there are no grand claims to be able to make the primary pain vanish. The aim is to change the way we deal with the secondary pain. For example, today I am still in a lot of pain in my legs from the walking involved in the Bus Shenanigans. The pain itself is the primary suffering. The secondary suffering (I don't like the word 'suffering' I might change it) in this case, is a mixture of feelings. I feel proud that I walked so far (hence why I don't like using the word 'suffering' as one umbrella), and yet now I am in pain I am frustrated that just a relatively short distance has had such strong ramifications and I am annoyed the pain is there and wondering how long it is going to stay.
So in that case, with using mindfulness I am hoping to change the way I deal with the 'secondary impact' ('impact' does that work more than 'suffering'? I'm not sure, but I'll go with it for now). 

We also did some breathing exercises and a 'body scan', I found it very difficult to keep my mind in the present, but I am hoping that will come with time and practise. It looks like I certainly shall be practising a lot, we have homework to do, not something I have ever been any good at since I left school. I am however going to give this course my all because I really want to give it the best chance I can.

 Although I don't want to have too many expectations, we wrote down our own personal aims for the course and what we each were hoping to get out of it. I shall share my course aims here and then in 8weeks time, I can look back and see how close I've come to achieving them. 

• To deal better with pain.
• To not worry so much about the future
• To enjoy each moment for what it is and not be caught up in the past or present.
• Be more accepting of self.

 I am normally quite sceptical, or rather cynical actually, but I do try and keep an open mind on things. I am very sceptical of anything that claims to be a miracle cure so I am very happy that this isn't the claim here. This is something that claims no miracles but instead, only to change the way we think in order to get the best out of ourselves and our situations. Although I do actually think that the power of positive thought really is quite miraculous in itself at times. So, from this first session, I have not come away sceptical or cynical, more tentatively hopeful. I am certainly going to give it a good old go, after all, I've paid for it now.