I have decided to change the name of my blog from More Special to Life's Ramblings.
Why the name change? Because I have decided that my blog will not just be about my MS and the title of More Special related to the MS. I have decided to write about other thing in life as well, so decided that a blog name change would be good.
Thank you to all who read it, and hope no one stops just because the title has been changed. Just want to focus on more things in life, than my MS... as life has much to offer.
Friday 30 January 2015
#msin5words
There is a trend on Twitter at the moment called #msin5words, asking people to describe their MS in five words. There have been some interesting replies to this and just thought would put some of them on my blog to show how different people respond to having MS in their lives.
I have picked these ones as they are thoughts that I have had over the past year since diagnosis. It certainly gives you a different view of life and when I had my blurred and double vision it give me an insight into how people with no vision feel - needing to holding on to someones arm, having some cut your food up for you, not being able to read and generally just being frustrated. And it made me admire these people.
Yes sometimes MS can be a pain in the rear end and you want it to go away but it's not a death sentence and life can still go on - OK so maybe I can't work full time due to fatigue, maybe I can't do everything I used to do, but I CAN still manage to work part time and go out and do things, even if I need to rest later on.
In 2014 I let MS rule my mind and my life, but in 2015 I decided not to let it do that, it will not define my life, but some days it will say to me, Jo Anne you need to slow down, you need to rest, and other days I get out of bed, forget I have it but then at end need to rest.
My favourite one of these #msin5words is "Neurological puzzle that needs solving" and yes it does need solving, need to find out what causes it and the questions I want answered is, "Why do over 4,000 people in N,Ireland have MS and why are 3/4 of them in County Antrim - what is it about County Antrim that gives people MS?
- A different view of life
- You're stronger than you think
- Pain in the rear end
- It's not a death sentence
- Did I take my meds?
- Make it go away please
- Easier to judge than understand
- Neurological puzzle that needs solving
- No one understands the fatigue
- Will not define me ever
- To Tired to do anything
- No two days the same
- You are looking really well
I have picked these ones as they are thoughts that I have had over the past year since diagnosis. It certainly gives you a different view of life and when I had my blurred and double vision it give me an insight into how people with no vision feel - needing to holding on to someones arm, having some cut your food up for you, not being able to read and generally just being frustrated. And it made me admire these people.
Yes sometimes MS can be a pain in the rear end and you want it to go away but it's not a death sentence and life can still go on - OK so maybe I can't work full time due to fatigue, maybe I can't do everything I used to do, but I CAN still manage to work part time and go out and do things, even if I need to rest later on.
In 2014 I let MS rule my mind and my life, but in 2015 I decided not to let it do that, it will not define my life, but some days it will say to me, Jo Anne you need to slow down, you need to rest, and other days I get out of bed, forget I have it but then at end need to rest.
My favourite one of these #msin5words is "Neurological puzzle that needs solving" and yes it does need solving, need to find out what causes it and the questions I want answered is, "Why do over 4,000 people in N,Ireland have MS and why are 3/4 of them in County Antrim - what is it about County Antrim that gives people MS?
Monday 26 January 2015
Pop Culture and God
Some people might find this post a bit controversial but I believe God can talk to us in many different ways - yes he can speak to us through sermons, prayers, worship and most importantly through his Word. I know he speaks to us and we can worship him through Christian songs.
I also believe God uses popular culture to speak to us, especially when are ears are closed, our hearts are hurting and he is unable to get through to us any other way. As a guy I knew in All Souls says "Truth is truth whoever may say it, and because people are made by God they can't help discovering and passing on truth"
And God will use these truths to nudge, sensitize, awaken and embrace us.
A few years back I was not in a good way and my walk with God was going a bit wayward, and I listened to a lot of music as it helps me keep sane, especially when I was living in London and needed to drown out the world when it got too noisy. A band I listened to a lot was U2 and I gained solace in the words of the songs and God used them to speak to me and reach out to me.
I know a lot of people will think, this is nonsense because many people despise Bono and U2, but in my opinion they are good and a lot of their music has religious undertones to it.
I am not again in the words of my wise friend suggesting " that songs should be elevated to the level of Scripture or should replace sermons and Bible Studies, but simply to point out that if we ignore popular culture we could be ignoring a channel through which god makes himself known".
And as Patty Heaton (actor) says 2" The beauty of Christianity is that we can enjoy the blessings God has bestowed upon non-believers. God blesses whomever he chooses with talents, and we can all reap the benefits".
And I know am not the only one who this has happened to, as I know of a Minister who was helped through a period of very bad depression by the music of U2 as well.
One such song that I kept listening to is "40" which is basically the words of Psalm 40 taken and put to their music:
"I waited patiently for the Lord
He inclined and word my cry
He brought me up out of the pit
Out of the miry clay
I will sing, sing a new song....."
I couldn't concentrate on the written words in the Bible, but the words song into my ears did speak to me.
There are other songs and other words which got me listening. There are the following lyrics from 'I still haven't found what I am looking for'....
"I believe in the Kingdom Come
Then all the colours will bleed into one
Bleed into one
But, yes, I'm still running
You broke the bonds
And you loosed the chains
Carried the cross of my shame
Oh, my shame, you know I believe it"
And more recently on their new album Songs of Innocence there is a song called "Song for Someone" which says:
"If there is a light
You can always see
And there is world
We can always be
If there is a dark
Within and without
And there is a light
Don't let it go out
And I'm a long way
From your hill on Calvary
And I'm a long way
From where I was, where I need to be"
This spoke to me because the last few years have been a real journey for me and I am now along way from where I was, and have climbed some hills and gone down some valley's but I am a long way from where I was, but I also know I am a long way from I need to be.
I will leave you with the following lyrics from 'Magnificent'
"Only love, only love can leave such a mark
But only love, only love unites our hearts
Justified, till we died you and I will magnify,
Magnificent, magnificent, magnificent"
There are other songs that God has used to speak to me, soften my heart and make me sit up and listen, but that will have to be another blog post.
NB: the quotes from a guy I knew in All Souls were taken from his new book "Pop Cultured" by Steve Turner
I also believe God uses popular culture to speak to us, especially when are ears are closed, our hearts are hurting and he is unable to get through to us any other way. As a guy I knew in All Souls says "Truth is truth whoever may say it, and because people are made by God they can't help discovering and passing on truth"
And God will use these truths to nudge, sensitize, awaken and embrace us.
A few years back I was not in a good way and my walk with God was going a bit wayward, and I listened to a lot of music as it helps me keep sane, especially when I was living in London and needed to drown out the world when it got too noisy. A band I listened to a lot was U2 and I gained solace in the words of the songs and God used them to speak to me and reach out to me.
I know a lot of people will think, this is nonsense because many people despise Bono and U2, but in my opinion they are good and a lot of their music has religious undertones to it.
I am not again in the words of my wise friend suggesting " that songs should be elevated to the level of Scripture or should replace sermons and Bible Studies, but simply to point out that if we ignore popular culture we could be ignoring a channel through which god makes himself known".
And as Patty Heaton (actor) says 2" The beauty of Christianity is that we can enjoy the blessings God has bestowed upon non-believers. God blesses whomever he chooses with talents, and we can all reap the benefits".
And I know am not the only one who this has happened to, as I know of a Minister who was helped through a period of very bad depression by the music of U2 as well.
One such song that I kept listening to is "40" which is basically the words of Psalm 40 taken and put to their music:
"I waited patiently for the Lord
He inclined and word my cry
He brought me up out of the pit
Out of the miry clay
I will sing, sing a new song....."
I couldn't concentrate on the written words in the Bible, but the words song into my ears did speak to me.
There are other songs and other words which got me listening. There are the following lyrics from 'I still haven't found what I am looking for'....
"I believe in the Kingdom Come
Then all the colours will bleed into one
Bleed into one
But, yes, I'm still running
You broke the bonds
And you loosed the chains
Carried the cross of my shame
Oh, my shame, you know I believe it"
And more recently on their new album Songs of Innocence there is a song called "Song for Someone" which says:
"If there is a light
You can always see
And there is world
We can always be
If there is a dark
Within and without
And there is a light
Don't let it go out
And I'm a long way
From your hill on Calvary
And I'm a long way
From where I was, where I need to be"
This spoke to me because the last few years have been a real journey for me and I am now along way from where I was, and have climbed some hills and gone down some valley's but I am a long way from where I was, but I also know I am a long way from I need to be.
I will leave you with the following lyrics from 'Magnificent'
"Only love, only love can leave such a mark
But only love, only love unites our hearts
Justified, till we died you and I will magnify,
Magnificent, magnificent, magnificent"
There are other songs that God has used to speak to me, soften my heart and make me sit up and listen, but that will have to be another blog post.
NB: the quotes from a guy I knew in All Souls were taken from his new book "Pop Cultured" by Steve Turner
Wednesday 14 January 2015
A Year On
So anniversaries are usually a day to celebrate an event, like a birthday or a wedding anniversary - going out for dinner, buying presents etc, or sometimes they are a day to be reflective on past events like the death of someone or a diagnosis of an illness.
Well today marks my 1 year anniversary of being diagnosed with Multiple Sclerosis and its not been a day of going out to dinner to celebrate but have been quite reflective on the past year. I am not down or depressed about it as I now feel I have reach complete acceptance and have a peace about it and am content enough in my situation.
When I was diagnosed it was hard to take in the news and think it has taken me the whole of 2014 to come to terms with MS and how it has affected my life. I made myself a promise on New Year's Eve that I would be more positive this year and not let MS rule me - and have been going quite well in this with only having one really bad day out of 12. In my opinion that is good going.
A lot of people told me when I was diagnosed that I should get up and get on with life - one friend keeps telling me to live and its not til now that I have decided to live - to do things that I have always wanted to go, like go to Spain etc. Its time the bucket list starts getting ticked off.
I have not been sitting on my bum doing nothing (well not all the time!) I have got up and done things - I have been working continuously from February (well one week off sick with a relapse in March, but have been in employment with the Northen Health and Social Care Trust from February til present.
I started off in Braid Valley offices for 5 weeks then Holywell for 6 weeks and have been in the Beeches, Ballyclare since May. Yes it has taken its toll on me at times, driving to work, being here for 4 hours and then driving back, but its been good for me to get out of the house and keep focused on something that wasn't me.
I have done social things, have moved house, have rested when needed too, have tired MS drugs and stopped and have managed to have a few mini breaks as well to Scotland and Ireland.
Its been a hard year at times, but there have been a few constants in my life
1) God, he has never let my hand go and he has and will continue to see me through this journey with MS.
2) Family - they have had a lot to put up with over the past 32 years, and am sure this year has just been as hard for them as it has been for me.
3) Friends - yes some friends have disappeared when I got diagnosed because they found the illness difficult, but I have a few core friends who have been there for me through thick and thin and put up with a lot of my moods.
I do appreciate all my friends and family and would not have got through the past year without the, and also without God's love and care.
Here is to 2015 and the second year of MS.
Sunday 11 January 2015
The trials of Avonex
In August 2014, I started my MS drugs, Avonex, injecting the drug into my legs every Friday night, which led to me being out of order for the weekends due to the side effects I suffered including: pain, flu like systems such as headache, fatigue, fever, chills and muscle aches, as well as feeling queasy and being dizzy. It was not nice to experience these, however they were not the only side effects.
Avonex also causes some patients to become depressed or have suicidal thoughts. And I knew this going on the treatment but thought I would be OK, even though I do have depression due to my MS (this is one of the symptoms) .
The important thing to remember is no to MS sufferers are the same and everyone reacts to medications differently.
It all started off OK, I just experienced the physical side effects but over the weeks by moods started to get low and wee bit dark as well and I was a very difficult person to live with and be around as well - relationships with family members and close friends were starting to hang by a thread.
I just seemed to lose control of myself at times, lashing out as people and exploding like a bomb for no apparent reason and doing things which just were not good for me or people involved. It was my family and close friends who took the brunt of my moods and I am surprised they are still with me, but they are and I am very appreciative.
I decided to go to my doctor and talk to him about this and try and get some help - we decided that the Avonex was a very big part of the problem but there were other factors as well - he was very supportive and kind and helped me.
I continued on with the Avonex and the side effects were still there so I rang the MS Nurse and told her my concerns and she told me to stop taking the drug and the consultant would send me out information on other drugs.
This is my story and as I said everyone reacts to medication differently and I know someone who is on it and has none of these issues.
On Christmas Eve I visited my consultant and we decided the new drug I would go on is Tecifidera, which I am pleased to say is in tablet form, so no more injecting myself every week.
Since I have been off the drug, my mood has improved, had one flare up on New Year's Eve, and still get impatient, but that's me. But overall the mood has improved which is good. And I have been doing a bit of Cognitive Behaviour Therapy to help myself.
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