The thrill of the auction

Those of you that know me, know I am not good with no much time on my hands as it leaves me to think too much   - and that is not always a good thing. And as I work part time I needed something to occupy me on the afternoons/evenings after I have had my wee rest.

So my friend suggested that I start an ebay shop to sell things, which would give me an interest, something to do and make some money. So I did this a week ago and its been fun so far. I used to sell stuff when I was t uni but it fizzled out over time.

I needed some things which I could sell and one of the first things I thought about was my Nintendo Games Console - NES - the original games console brought out by Nintendo in 1983. I used to love playing this when I came home from school - I was 11 when I got my first games console. It was fun - loved Super Mario Bros and Duck Hunt. I became quite handy shooting those ducks with the gun. However over time I started to play it less and less and for the past 15 years its been gathering dust in the attic. 

I put it on for sale and there was some interest - it was exciting sitting watching it, count down the minutes, seeing the bids come in and then finally, it ended and the final price. I went for a price I would never have expected. Its the thrill of the auction I like too. On Friday night I went up to the attic and raided other stuff to sell. It is disappointing when things don't sell - but I still like the thrill of the auction and the last minutes waiting to see if those watching will make a bid.

If you want to check out my ebay shop, please clink on this link which will take you to my seller account. Go on, have a look and feel free to bid as well. 

Treat Me Right

There has been a lot of talk recently about ALS/Motor Neuron disease due to the Ice Bucket Challenge and wanting to raise awareness of the illness and raise money to find a cure.

There has been an MS campaign going on for month, but does not involve gimmicks, called the Treat Me Right campaign where people are asked to help fight for the right treatment at the right time for people with MS, whatever their situation and wherever they live.

There seems to be a unbalanced distribution/availability of MS drugs depending on where you live - you get a better choice of drug if you live in England/Wales but not Scotland/Ireland and there has been all the talk recently about medically prescribed Marijuana being available in Wales and not rest of UK. Marijuana is good for those with MS as it is with other chronic illnesses - it helps with the spasms people suffer from.

The campaign is aimed at bringing a change and making everything available everywhere. We are called to sign up to the Treat Me Right campaign and help make four goals a reality by 2016:

1. All licensed MS treatments available on the NHS to everyone eligible for them
2. Regular reviews of treatment and care by MS specialists for everyone with MS
3. All people with relapsing remitting MS invited to talk with a specialist about their treatment, in light of new disease modifying drug (DMD) options in 2014
4. Accessible information about treatment options, and support to be equal partners in decision-making, available to all people with MS

To find out more click on Treat Me Right  and to sign up click here Sign Up. I signed ages ago and have had responses from two MP's in the Antrim area so far - one from DUP and one from SDLP and both very positive views.  So go ahead sign up and spread the word - and you don't have to get covered in ice to do this. 

Living life

My last post seemed a bit of a ramble relating to the Spoon Theory and through it I changed my way of thinking about MS really.

Yes I have MS and I may not have the life I used to, but I am still able to do things. My friend challenged me the other night not to think about having had MS since January but to remember that the neurologist said this has been creeping up on me since 2006. So I should see it as having lived with MS since then and look at what I did/achieve in those years - and see that these things where done with a 'invisible' illness to me, and if I did them then, then I can do them now.

So what can I be proud of from 2006 to now -

• holding down full time jobs in the Foreign and Commonwealth Office, a law firm and a skills event
• going to Mozambique to visit my sister
• going to Serbia, Bosnia and Croatia on a taste of mission trip
• going to Hungary on two week mission trip
• going on holidays to Morocco, Iceland, Berlin and Italy
• serving in my church
• living in Peru for a year
• going white water rafting

This is to list just a few things, and am sure there are more but these are good memories for me to hold on to.

So yes I did those things with MS lying dormant in me, but showing itself through different illness:

• Vertigo
• Panic attacks
• Anxiety attacks
• Urinary Tract Infections
• Chest Pain
• Post viral fatigue syndrome

But I did not give up then, ok so I had to slow down at times and had times of depression, but I still carried on. So what my friend is saying is, that life still goes on, yes now I know I have MS, and yes I need to slow down when my body tells me, and yes I have to take 26 tablets a day, and yes I have to inject myself every week - but I am still going. I just need to learn how to be patient and take one day at a time.

I may not be able to do everything that I used to do, or do everything I want to do, but I do what I can and I need to learn to be content with that - life ain't over yet - I could still maybe achieve my 'bucket list' - I just need to learn to be patient. The main thing that drags me to the ground is my depression and negative thoughts - need to get a hold on them - its easier said that done - but need to develop my techniques more re getting out of those negative thoughts.

Everyone struggles, not just me. Life is about 'one day at a time' and being thankful everyday.

I hope my ramblings are ok. Anyone who knows me/sees me weekly or daily or had my numbers, email, facebook, twitter then just feel free to remind me of these things and kick me up the backside - but also depression is real and it can really attack someone and no matter how hard we try to think straight we can't at times.

Everyone needs looked after, and everyone needs TLC - no matter who they are or what they are going through.

The Spoon Theory

When people are ill they find it hard to do everything that they used to do and it is frustrating for us who have to go through that, but also it can be frustrating for those around us who do not understand or cannot see that we are sick as many illnesses are 'invisible' and symptoms suffered like fatigue, pain etc. cannot be seen by an outsider.  

It’s sometimes hard to explain how it feels to be ill and what fatigue really does to a person. One woman who found this hard devised a theory called the spoon theory and helps explain what it feels like to the person who is ill and unable to do all they want to do because of fatigue and pain etc. 

The woman in question had Lupus and over dinner one night her friend/roommate asked her how it felt to be ill and have Lupus. She was shocked as she thought her friend already understood as she had been there through the pain etc.  After talking about pill, aches and pains the friend kept pursuing and was not satisfied with the answers being given. She was curious and wanted to know more, what it felt like to be sick. 

The person with Lupus glanced around the table looking for help or guidance on how to best explain this to her friend to best explain every detail or every day being effected and give the emotions a sick person goes through with clarity.  

At that moment the spoon theory was born. She talked about it in terms of Lupus, so am going to change Lupus to MS, but the theory suits any chronic illness. 

She grabbed the every spoon on the table, all the spoons from other tables as well. Looked her friend in the eye and said "Here you go, you have Lupus/MS. Her friend looked at her confused at the spoons being thrown into her hands, but finally took the spoons.

She explained that the different in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn't have to. The healthy have the luxury of a life without choices, something I took for granted before MS. 

Before MS, I started the day with unlimited amount of possibilities and energy to do whatever I desire (well will rephrase that and say before 2006... as that's when my health started to go down) For the most part I did not need to worry about the effects of my actions on my health. 

For her explanation she used spoons to convey this point. She wanted something for the friend to actually hold, for her to take them away from her, since most people who get sick feel a 'loss' of life they once knew. If she was in control of taking the spoons away then the friend would know what it felt like to have someone or something else, in my case MS, in her case Lupus, being in control.

Her friend was asked to count the spoons, she asked why and it was explained that when you are healthy you expect to have an never-ending supply of spoons (energy) But when you have to plan your day, you need to know how many 'spoons' you are starting with. It doesn't guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. But she was not allowed more as this was not a game. It is important to know how many spoons you had and not drop any... 

She was asked to list off the tasks for her day, including the simple such as brushing her teeth and it was explained to her that each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, she was cut off and a spoon taken away.  

And it is important to remember your medication as if you don't a spoon will be lost as, in my case, the pain would be worse without the pain medication which makes me tired. 

Showering costs a spoon, as does washing my hair, bending for the breakfast cereal and bowl etc. would cost a spoon as well. Every little thing costs energy. 

When I write this I know that it isn't just people who are ill that have to face this every day, but it’s mostly everyone, those who don't sleep well the night before, those who do shift work, those who are on call in their jobs etc. - they also have to look after their 'spoons' / energy the next day as well. 

During this explanation the girl was left with six spoons before she has even got to work and was told that when the 'spoons' are gone, they are gone and none can be bought back. She also explained that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on "spoons", because you never know when you truly will need them.

In January/February when I was at my worst with the MS, and other times I have had relapses since then, that is when I really do abide by the 'spoons' theory and try and not do too much or else I run out of energy, but a nap during the day sometimes helps. Now a days, I do what I can and if I need to slow down I do, but I also realise that most people need to do this.

I am trying not to let MS get me, I am trying to 'fight it' but suppose it’s not really fighting it that I need to do, but live with it. I can never make it go away, it is always there, I may have to think about what I do at times because of that - I always have to remember my medication and then the injections weekly at the minute make me miss most of my Saturday, but I am getting up and going on and living my daily life with it - I don't want to consume my life and my thoughts - it does now probably 90% of the time but I am getting there   - slowly but surely.

All of life is a learning process, with MS or not, it’s a learning process. I am learning to slow down as my body needs me to, but my brain/mind is not in cohorts with my body so am need to try and get these two to work together. I need to take one day at time, but I think this is the case for most people anyway - I just never thought that way before. 

It’s weird how this blog post started out - I started out wanting to explain the spoon theory but then my mind kind of went another way. I hope that it’s not too much of a ramble and that it makes sense, well mostly anyway!

During the writing of this I found myself thinking that I use MS as an excuse at times, an excuse not to do things or to excuse myself to other people - but realise I don't need to, as people DO understand, those who know me and love me do understand well as much as we all can understand anything. 

MRI Mark 2

On my first appointment with my MS neurologist in May, he said he was going to organise another MRI for me, so we can see how the progression of my MS - to see whether new lesions had developed and if the original lesions has grown or decreased in size.

In July I received a letter giving me the date of the MRI. I was a wee bit scared when the letter came through as it was many pages long and outlined that I needed an MRI of my head and  of my spine done twice - one normal one and one with contrast dye. 

The contrast dye helps to show enhances the MRI and makes it easier to read and spot things - basically contrasting the two MRI's - the one with the dye to the one without the dye and see how things differ. 

Last Friday (22nd August) I went for my MRI. I tell you, I was less emotional going to this one than I was going to the one on 13th January, and its because in January I had no idea what was wrong with but now I know that it is MS so was not worried about having it. MRI's can be relaxing if you can just cut out the bang bang noise of the machine.

My appointment was at 11am and I arrived at 10.45 and could not find the place (different hospital than the one in January) but found it after going through many corridors. Was taken in at 11.10 and changed into my gown and then had to wait til 11.25 before was taken into the room with the big machine. 

I lay down on the machine, had my ear plugs in my ears and rests against my head so it would be more comfy... and there was a wee mirror so I can see what was going on in the 'engine' room. I was so tired I nearly fell asleep but the bang banging stopped me. I was not allowed to move and at one point I was so focused on trying to keep my body from going into random spasms as it does, that I forgot to breathe!!

The first part lasted about 35 minutes, different scans taking place for different periods of time. Then they came into put the dye into my arm and change me from one bed to another bed so that my spine could be scanned. Then was put back into the machine but this time the wee mirror was not available  - not sure why- so could not see anymore, this was when I did start to feel claustrophobic but was ok. Another 20 minutes later and everything had finished and I was free to go.

MRI's are a painless thing, which is good as will probably have more over the course of my life as they watch the progression of the lesions on my wee brain! The only annoying thing is the bang bang noises but I after having three MRI's am getting used to it and even made wee tunes out of the noises in my head and at one point it sounded as if the machine was saying Oh Dear, Oh Dear!!

Depression

On Tuesday 12th August I, like the rest of the UK, woke up to the news that Robin Williams had died and according to the media, he committed suicide due to depression and booze/drug addiction. Subsequently we have been informed that months prior to his death, Williams was diagnosed with Parkinson's disease and it was this and the fear that this disease would stop him living life to the full which made him end his life.

Whatever the reason, it was sad to hear that this man who had made me and millions of others life over the years decided life was not worth fighting for. 

Robin Williams

I know many people who suffer from mental illnesses and the varying degrees of it - bipolar disorder, schizophrenia, depression, post natal depression, post traumatic stress disorder etc  - and from personal experience know how debilitating an illness it it. It invades your life - getting into your head, plaguing you with negative thoughts and destroying all joy you may have. 

I have had my days where I just pulled the cover over my head and let life carry on without me, and I have had that day where you realise there is something wrong and you need help.I sought help and I carried on with life the best I could. I thought I was getting better of my depression and went off my tablets in 2012, after six years of being on them.  Then in late 2013 I went back on them again thinking I was a failure for letting depression into my life again - but little did I know that the depression was coming from MS - and even though I hate the illness  - I know now that the depression is linked to it and I am not a failure,

However, anyone with depression is NOT a failure, it is not in the head of the person, depression and all other mental illnesses are REAL and dangerous and people need to wake up to the fact that depressed people need REAL help not just a pat on the back and telling them to 'get on with life' - its not that simple and it leads to devastating news like someone taking their own life. Depression is an illness which needs to be treating the way other illnesses are treated - with care and medication. People with depression need to be open to receiving help as well. 

I can understand where Robin Williams was coming from - I know how a chronic illness can turn your life upside down and how hard it is to accept it and carry on - I know what depression feels like, I know what despair feels like, and I know what its like to want to take your own life as it would make things a lot easier for you and for the people around you  - I know what wanting to give up the fight is like.... 

However I also have faith - faith that God is with me and despite the fact that maybe life is not what it used to be like, life can still be good and God has a path set out for me and he has provided people to help me and will continue to support - as I also know you cannot do life alone. You need support in your life and you also need to support others. 

#100 Happy Days

Over the past few months I was noticing a few of my friends putting things on Facebook and twitter using the hashtag #100happydays and was wondering what it was all about so I decided to take a wee look. I googled it and found the 100 happy days website and found out that it is a viral trend which aims to make people feel happier and more fulfilled by asking them to record a cheerful moment each day by posting a picture of what has been you happy that day. 

The thought behind it is that taking notice of what makes you happy and documenting it on-line can help put you in a better mood every day, become more optimistic and realise how lucky you are to have the life you have. 

I decided to take up this challenge 27 days ago because I thought it would help me focus on the positives of life. I have had a rough few months with MS etc and have low moods and my friend keeps telling me to focus on one day at a time and look to the positive things in life - so I thought that doing the 100 happy days challenge would help me as I would be looking for positives. 

The first few days of this challenge I found it exciting looking for something to post on facebook which made me happy - this ranged from jaffa cake ice cream, joker ice lollies, cuddles with Oscar the dog etc - but as the days have gone on am finding it hard to find things of which I can take pictures of and put on Facebook e.g happy thoughts, special times with friends and family which would not be right to publicise on Facebook 

due to people not liking social media etc and because they are between us.

Like other people have said when doing this, the small happinesses are too personal. Doing this has helped change my mindset though - helped me focus on the happy moments more than the negative ones. For example, on Friday what made me happy was getting my MS drugs, because it meant I was on course for getting less relapses, but couldn't really upload this on facebook could I? 

So what has had me happy the past 27 days (what I have posted - other things have made me happy) - here is a list:

Day 1 - cuddles with Oscar the dog (a friend's little cheeky dog - so cute)

Day 2 - a strawberry sundae (which I had in a cafe on a little outing with my Nana)

Day 3 - joker ice lolly - (brought back memories of my childhood as I ate them then)

Day 4 - Jaffa cake ice cream (love jaffa cakes)

Day 5 - a picture of my dad when he was 21 (it was his 71st Birthday)

Day 6 - a pink flower (bright colours make me smile)

Day 7 - Slemish mountain (on my drive home for work)

Day 8 - Alejandro and me (memories of Peru)

Day 9 - lovely day out with my friend Rachel in Carnfunnock Park

Day 10 - BBQ times with family

Day 11 - Portballintrae in evening sun

Day 12 - picture of Dexter - lovely dog who lives close by in Portballintrae

Day 13 - thankful for family and friends

Day 14  - commonwealth games picture - loved watching the swimming

Day 15 - a pic of a cat massaging a cat - I have a massage but could not really put a picture of that!!

Day 16 - pic of my friend Miranda and me - she was on my mind that night

Day 17 - lunch with friends in Scoffwells - no pic as a pic was not appropriate 

See what I mean - sometimes pictures just are not appropriate. 

Day 18 - Northern Ireland winning medals at Commonwealth Games 

Day 19 - picture of Portballintrae again

Day 20 - picture of the night sky in Ballymena   -was amazing

Day 21 - picture of a London bus - still cannot get used to seeing them drive around Ballymena roads - and it always makes me smile

Day 22 - The Great British Bake Off started again, yeah!

Day 23 - coffee with friend - tagged the friend instead of putting photo as felt was better

Day 24 - Homeland Season 2 

Day 25 - a lovely scone I had in a coffee shop - was a big scone

Day 26 - had great Skype chat with a friend Emma - again better to tag the person

Day 27 - DVD box-set again of Lie to Me

Today is Day 28 and today I think my happy moment (well one of them anyway) is my blog, because it helps me process my thoughts and has brought me interesting contacts and comments from people. Thanks for reading.

I am unsure whether I will continue the challenge using social media, but will be continuing it in real life - sometimes may post things, but it will depend on the day and the happy moment, because sometimes it is best to keep happy things to yourself.