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. 

The After Effects

As I had been talking to people about Avonex and the side effects I would experience from injecting this drug I went to the hospital prepared. I had taken my two ibropfen, two hours before hand as instructed to help fight off the flu like symptoms which I was told to expect.

The nurse even told me as well I would experience flu like symptoms. And an hour and a half later my head started to hurt and I felt bit miserable so when I went home I went straight to sleep and slept for about two hours. Woke up feeling bit more normal and went up to the North Coast with my parents. I was feeling a bit weak and after eating some lovely pooh bear (honeycomb) ice cream took to my bed for a rest. 

On Saturday I woke up with a bit of blurred vision, feeling bit weak and sore through the body but I got up and went on with the day. Went for coffee with parents and then in the afternoon was still feeling ok so we went for a walk along Ramore head in Portrush. Actually managed the whole walk which was great - not too tired and my leg was not too sore, thanks goodness.

Was tired at night to went to bed and watched some Homeland, great series. 

On Sunday I woke up at 10am, so body obviously needed the rest - was tired most of the day Sunday and did not do very much. I was also very low from Saturday evening to Sunday - negative thoughts coming and going, but spoke to my friend from London who knows me well and it helped very much just to talk to someone and listen to them as well. 

I came home from the North Coast to Ballymena that evening and was thinking how I have come through the injection process well and had no real bad flu like symptoms - as was expecting to have felt worse.

However that was not too last and on Monday morning it hit me like a brick - I was all shaky, feeling weak, going hot and cold, bad headache and the site were I injected was killing me. Seems like I had a delayed reaction. Went to work but came home feeling miserable and spent afternoon/evening on sofa shivering and watching TV, was in bed by 9.30. 

Today am feeling bit better but still not great. But know I will be fine. Hoping that every week will not be the same, but will wait and see what happens. The MS Nurse said it takes three months for your body to get used to the injection and nine month to a year to see any real affects the drug is having on my body. 

Injection Day!!

In my last post I mentioned how I got the call for my MS drugs, well the time has come and now have started on the treatment.

On Friday 8th August we made our way to Royal Victoria, Belfast to go to the Pain Treatment unit were I was to meet my MS Nurse Mark. I was very nervous going as I did not want to start injecting myself every week as I really don't like needles. However I need not have worried as Mark was very nice and explained everything to me  - showing me the prefilled Avonex syringe - how it all worked etc

Here is a picture of Avonex and how it works.  Mark went through sample ones - putting them together and injecting a pin cushion so I can see how it was done. Then I got to do a trial run as well on a practice kit and a pin cushion.

First of all there is a grey cap on it which needs to be taken off, then you take the foil off the needle cover and put the cover into the pen/syringe then pull the body away from the injector shield and the needle cover flies off and now the needle is inserted into the pen.

Next step is taking the pen and injecting yourself - so putting the needle in the set place an then press the blue button - and hey presto I have been injected!

When I injected myself I thought it was going to be really sore as normally needles are, but it wasn't that bad, just felt like it would if you pricked yourself with a pin. Now, I know it will be hard getting used to injecting myself every week but now I have done it once I know its not painful when injecting.

Where do I inject? Well Avonex is a drug which is injected straight into the muscle, so the best place to do it is the thigh - Mark explained how to do it - first of all your put your hand to your hip then move it down the leg to the knee and the second place where the hand hits (the middle of the thigh) is where the injection goes. And every week will rotate the side on which injection is done - so Friday I injected in the right thigh and this Friday will inject on the left side and so on and so on.

The call for drugs!!

In a few posts back I talked about discussing my MS drugs with the consultant and how I was going to chose being Avonex and Rebif. A couple of weeks ago I was speaking to the MS nurse and I decided to go with Avonex

The reasons behind this are mainly because I just have to inject once a week, so its only once a week I feel rough and  injecting into the skin can leave skin rashes.

With Avonex you inject into the muscle which in turn as its own problems as well including bruising and the ability to hit a blood vessel when injecting. And the side effects of this are flu like symptoms which could last anywhere between 24 and 48 hours. People have advised me to take Ibuprofen before I inject and during the flu like symptoms time as well.

Last Friday (1st August) I got the letter through the post telling me to I was getting my drugs and it would be on the 8th August. I felt like I had won the lottery and am not sure why, I was really excited because I was getting drugs which would help my MS  -would help control the symptoms and hopefully lessen the relapses I have.

I went to visit someone last weekend to is also taking Avonex, she showed me all her equipment including the needles and the massive cool bag you have to keep them in when travelling - takes up half the hand luggage apparently.. so no more travelling on easy-jet with just hand luggage! or else travelling with injections and no clothes!!

She advised me to stock up on plasters (for when I hit the blood vessels) and ibuprofen so went and got them the other day. She advised to inject on the leg and not the arm and make sure the leg is raised when injecting to stop the bruising.. oh how much fun I have to look forward to.

I began to get nervous about it all near the beginning of the week. People in work have offered to inject me when I annoy them - lovely people!

It was good to get insight into the life of injecting myself - so here goes, am all prepared for what the drugs may bring - the side affects, the pain and hopefully the betterment of my life and the controlling of symptoms and relapses.

MS Hug

In the last blog post I mentioned the MS Hug so thought would develop this further and explain it more. 

MS Hug – what is it and why the name?

MS hug gets its name from certain sensations felt during an episode of muscle contractions. Some people report no pain, but a sense of tight pressure around the waist, torso or neck. I don’t get pain just the tight pressure of the muscles tightening - sometimes it’s my stomach and other times it’s the chest. Like I said, there is no pain but it’s very annoying and very hard to hide that it’s happen as it makes my body and face twitch.

Other people may experience band of tingling or burning in the same area. Sharp, stabbing pain or dull, widespread aching are also possible symptoms of MS hug. Words often used to describe MS hug include:

• ·         squeezing

• ·         crushing

• ·         ants crawling under the skin

• ·         hot or cold burning

• ·         pins and needles 

From these symptoms, I experience the squeezing and crushing but thank goodness not the ants crawling under the skin. As the going hot and cold – this is something that happens to me but not really related to the hug. And I have pins and needles a lot in my hands and feet. 

What triggers an MS Hug?

The triggers of an MS Hug are the same as triggers for most other symptoms of MS and are

Heat, stress, and fatigue—all situations in which your body may not be running at 100 percent efficiency

So this means that someone with MS should really avoid stress, stay in cool places though we also need to be in the sun as Vitamin D is good for us as it is for everyone. Heat does disagree with people and it does affect me and at times during this hot weather I have had to go to bed with a wet face cloth over my face as I was burning up and felt like I had a fever.  

Relapse Number 4

I have told you about the other relapses I have had, well not keen in just having one relapse I have now had four relapses with the latest one starting on 12th July.

I woke up on the 12th feeling rotten, my head was spinning and I just felt terrible - I stayed in bed for a while and thought would be ok but throughout the day just continued to feel bad. I was due to go out to my aunts house to spend the 12th with my family but was to dizzy to drive so didn't. However my family took pity on me and came to collect me, which was lovely, so got to spend time with them and eat a delicious fry as well.

I started to feel a bit better being in company  - however I barely slept that night and woke up on Sunday feeling bad, didn't go to church as again too dizzy to drive. To make things worse when I came down the stairs I realised that our freezer was not working - so all the food was defrosting - not good.

I went to my other aunts house for Sunday lunch which was lovely then we came back to mine and sorted out the freezer - Heather took so much of it home and cooked it for us, brought it back to put in our freezer as we thought it was working again. However, next morning they had to come and pick it all up again as the freezer was definitely breaking and nothing we put in last night had frozen up. So now our food is in the freezers of my Nana and my Aunt!

On the Monday morning I woke up feeling still the same and has actually passed out a couple of times over the weekend and my stomach was going wild - not vomiting but felt like it was in spasm - which is a sudden or involuntary contraction of  a muscle. I did not like this or the fact that my head was spinning so I rang the out of hours doctors (it was a bank holiday here) and went to see them were there told me what I knew anyway - I was having a relapse! Lovely.

So what were all of my symptoms this time - well there were the usual ones of dizziness, pins and needles, headache and fatigue and this new one - spasms. I have found out that the spasm of the stomach muscles is called an MS Hug -which is a deceptive name as hugs are meant to be loving and this is definitely not. Due to this new symptom I have now got another medication to take - so now am on 22  tablets a day (not all same ones, some are taken three times a day)  - lovely.

The Grieving Process

Having a chronic illness is hard, its hard to live with, hard to get your head around an hard to accept that you have got said illness. When I was diagnosed I started to grieve, grieve for the life I had and for the future I do not know  -it is ok to grieve when diagnosed with a chronic illness - its ok to grieve for anything that interrupts life and stops life briefly - loss of a job, loss of a loved one, relationship breakdown etc

There is a grieving process - and its important to remember that all people grieve differently. Some people, like me, will wear their emotions on their sleeve and be outwardly emotional - which people can find hard to cope with. Others will experience their grief more internally, and may not cry. But it is important to remember that people's grieve experiences should not be judged as each person experiences it differently. 

The five steps in grieving re:

• Denial and Isolation - so in my case denying I have MS and feeling alone as my parents and friends did not understand how I was feeling - how the illness effected me etc. However this is a temporary process and I knew I was not alone   - I knew and still know that I have a support network, which is important for everyone to have, and people cared for me and were praying for me

• Anger  - as the masking effects of denial and isolation begin to wear off, reality and its pain re-emerge. We are not ready. The intense emotion is deflected from our vulnerable core, redirected and expressed instead as anger. And then after being angry we feel guilty at being angry which makes us more angry. I can't say I was truly angry - would say more extremely frustrated. But I was angry at the doctors in the hospital who passed me off on my trip to A&E as having a migraine!! I would love to go back to them now and go "Migraine, yeah whatever mate"! 

• Bargaining is the next process but I don't think I went through this stage. I need have feelings of helplessness and vulnerability and asked a lot of what now, what ifs to God and why me? I didn't really know what would be coming my way felt uncertain and unsure.

• Depression is the fourth step. I suffered from depression from 2006 and finally went off the anti depressants in 2012 but in November 2013 had to go back on them due to low moods etc. I was frustrated about having to go back on them but now realise it was part of my MS as one of the symptoms is depression. So yes I suffer from depression but its part of the illness and not part of the grieving process. Though I did have periods of crying over being diagnosed and worrying over the future.

• Acceptance is the final step. And in my case it would be to accept that I have the illness, its part of my life, part of who I am, but it doesn't need to be my whole life. I need to accept I have it and carry on with life, which I have been doing. May not be able to do everything I have wanted to do or life will not be completely the same again but I am still living.

I started to begin the acceptance process on 30th June - am not sure am totally there, thought I was but my friend told me two weeks later that she thinks I have just partially accepted it, and when she said this, I agreed as yes I partially accepted my illness. Now need to fully accept. 

Off to Donegal

On 4th July I went off to Donegal for the weekend with some people from West Church, Ballymena - the church I attend. We were going to stay in Donegal Town in a lovely 4 star hotel.

As I couldn't drive that whole distance myself, I caught a lift from Anna - it was a lovely day, sun shining though some rain to but it was a lovely drive down  - took about 2.5 hours I think, with comfort and ice cream breaks in between. 

We arrived in Donegal shortly after 6pm after leaving my house about 3.30pm. 

It was a good weekend, good craic and I enjoyed getting to know people I had not spoken to before in church. There were about 40 of us there and some came from 1st Ballymena as well. The speaker for the weekend was Desi Maxwell who is very knowledgeable about Jews and Christians and leads trips to the Holy Land each year.

Apparently when my Dad and Desi were younger there were often mistaken for brothers... thought they are not related at all.

On the Friday night we ate our meal - a lovely three course meal and then Desi talked to us for about 15 minutes, then it was time for bed for me but others went to the town for a walk - but me I was exhausted and needed my sleep!! 

On the Saturday after breakfast I went for a wee walk then came back and Desi talked to us for about 2 hours, mixed in with coffee break. He is a very interesting speaker. Around 1.45pm a few of house headed to the beach to go for a walk - it had been raining but by now the sun was shining.

I wanted to go for a beach walk, but I cannot walk very far or fast so I let everyone go ahead then I decided to go explore the sand dunes and walked along the top for a bit as it was easier than walking on sand. It was enjoyable too.

We were out for about 3 hours then headed back to hotel for a wee rest and freshen up before we went down for another three course meal - tonight I had lamb and it was beautiful. Lamb is my favourite meat of all time.  After Dinner we played a game and I have never seen people so competitive in my life - I even got scratched at one point as I was trying to retrieve lost jigsaw pieces. Our team won. It was good fun. After that we retired to the bar area to listen to some county music. And at 11pm I headed to bed - was weird because I was the youngest person there but first one to bed - that is not natural, should be the older people going first. But c'est la vie!

On Sunday we went to the local church, and then headed off to Harvey's Point for lunch - they do a carvery lunch and think my eyes were bigger than my belly at times - plate filled high with all the gorgeous food - managed to eat the starter and then the desert but struggled with main course - maybe due to the fact I did not like what was on offer - all horrible vegetables like parsnip and turnip - yuck!

It was great craic around the table and am glad I went on the weekend, met some new nice people and learned from Desi. We left Harvey's Point around 3.45pm and arrived home at 6.45pm or so. I slept on way home - I can sleep anywhere these days!

Six Month Review

After my first appointment with my MS Neurologist he said he would see me again in three months time, and true to his word, three days after my appointment I got another appointment letter for 2nd July - but then month later this was changed to 25th June. 

So off I went to see my lovely consultant again on 25th June - my parents had booked a holiday a long time before to Cornwell so they weren't around to take me much to the annoyance of my mum - so I asked a friend to take me instead. It was important for me to have some support as support is integral to people's lives but also so she could listen and remember for me as my memory fails me at times.

We arrived at the allotted time of 10.30 but had to wait again, like I said before, my consultant is a busy man. We did not need to wait to long, we were seen after an hour which was good. 

I was nervous going in as never sure what they will say now - but it was a good appointment. I told him about how the last three months had been including the relapse and new symptoms etc. He did the usual tests for testing my reflexes etc and said I was progressing well.

That was good news - despite not feeling 100% I was progressing well. He said to keep going the way am going, doing what am doing but need to exercise as well! AHHH bad word exercise - but have been trying to do a few exercises in the house and walk as well - hard to do when fatigued but suppose sometimes you need to push through the barrier and hope that your body will not protest later on!!

In my first appointment, the consultant said he wanted me to have an MRI but still had not got it by second appointment, so reminded him again and he said yes he still wants me to have it. 

We discussed the drugs as well and I said that I had chosen two but need to decide now - and the decision was to be made between Avonex  - to read more click here and Rebif - to read more click here - he said they were both good and it was my decision - and I would be getting word from MS Nurse to start the drugs in August.

The consultant said he wanted to see me again in another three months  - which would be September. True to his word this guy.  I came out of the appointment feeling positive and with a decision to make. 

Endurance Test!

Work - such an annoying four letter word - but something I have been struggling with since coming home from living in Peru for a year  - since Feb 2013. I think I mentioned before how I was unemployed from Feb to May 2013 then got a job from which I was made redundant from five months later at the end of September 2013. I was then job hunting from October to December 2013 - had 14 interviews throughout this two months and got rejected from 13 of them. 

Finally in December 2013 I started a job in the Northern Health and Social Care Trust but only managed to do three days before was it with a mysterious illness which now I know is MS. 

I was feeling ok to go back to work in February 2014 and got a temporary job in the NHS and have been going temp work since then - managing six weeks in Braid Valley Ballymena, six weeks in Hollywell and am now entering my 12th week in The Beeches - Ballyclare - something I am chuffed about. 

Although temping is good, the pay is rubbish and the holidays are few and far between and sick pay does not exist, so would like some security of a permanent job.

Since March I have had six interviews all within the Northern Health and Social Care Trust. 

• The first one I did not get but was put on waiting list, however am number 12! 
• Second one was a rejection though came second (but no waiting list)! 
• Third one was put on waiting list.. but am number 26!! 
• Fourth one  -did not get, interview was terrible
• Fifth one - interview awful so frustrated and no did not get it
• Sixth one - still waiting to hear back

And I have two more this week - feel very frustrated at times re work and health etc, but as people say focus on health its more important. And at least I have part time temporary work to go to and as I need to believe, God is in control  - he knows what he is doing and is timing is perfect.

And that I have seen over the past year - though life been hard since January - God has always been there, he has provided temp jobs when needed and other things as well. He is a faithful God and need to keep eyes focused on him and believe there is a purpose/a reason for my MS and ask him to use it for His good. 

The American in Ieland!

Last post I talked about going to Scotland to see Cecily who I met in Peru. As well as meeting Cecily, I also met other lovely people in Peru - Peruvians as well as other nationalities such as American. One of these Americans who I met through my church in Arequipa came over to visit Ireland at the end of May and came to stay with us.

This is Ivana and myself obviously! Ivana and I met in Arequipa in February/March 2013 and we last saw each other around April/May 2013 when she left Peru to go back to America, but we did keep in touch via facebook. So when she said she was coming to UK and to visit Ireland I said come stay with us, and it was great seeing her again - not just because she brought me two big backs of peanut butter m&m's to which I am addicted!

Normally Ireland is wet and cold but that weekend Ivana was over the sun shone. We sent her to Belfast by herself on the Friday to do touristy stuff there and on Friday night we cheered on Peru when they were playing football against England at Wembley. Unfortunately England won!

On the Saturday my Dad and I took Ivana to the North Coast - we went to the Giant's Causeway (cannot count how many times I have been there, but it never gets boring - love the hexagons).

And we introduced Ivana to the Northern Ireland delicacy of Pooh Bear Ice Cream (Honeycomb Ice Cream) which she loved, and yes it was Maud's.

In the afternoon Ivana and Dad went off to the Carrick a rede rope bridge and left me at home to rest - could not have walked the distance to the bridge from the car park. They enjoyed themselves and I rested do that was good. Then we went home via Portstewart.

When we arrived home Mum had cooked us a lovely Ulster Fry - another Irish delicacy for Ivana to try - which consisted of eggs, bacon, sausages, mushrooms, tomatoes, baked beans, soda bread, potato bread and wheaten farl - a  lovely big feed.

Ivana left on the Sunday morning as she headed back to London for one more day sight seeing there before she went back to America. Was good seeing her again.