A Christmas Eve appointment

Two months ago I received an appointment letter to see my Neurologist on the 24th December - a lovely treat for Christmas Eve. Better than last Christmas Eve when I was in hospital not knowing what was wrong with me or if I would get out for Christmas Day.

I was a wee bit dreading this appointment as I knew I was going to find out the results from my last MRI.  My first MRI saw loads of lesions, my second MRI saw four more new lesions and no lesions having decreased - so I was hoping and praying that the third MRI of 2014 showed no new lesions, and also that some of the current lesions had decreased. So I was a wee bit scared of going to see my neuro and hear what he said.

Thankfully it wasn't bad news, but then again it wasn't overly great news but am content and happy enough. Thankfully there are no more new lesions, however, none of the current lesions have decreased - it is the same as it was after the second MRI. So as the neuro said my MS is stable. That is something to be thankful for and hopefully the Avonex drug worked and lesions have decreased. Not sure when my next MRI will be to see the results of the drug.

Just in case you ever wanted to see what the inside of my brain look like, here is a photo - but unfortunately its not my brain:

What you should say to those with MS?

Before I start this blog post, just want to put out a disclaimer... some of this blog was not written by me, some of the credit goes to Kayla over at Keep S'Myelin.

At the beginning when I was diagnosed, a lot of people would come up to me and say things which were meant to help me, but actually scared me or frustrated me.  I know people are saying things in kindness and to help me, and all the support I have had over the past year has been amazing and am so grateful for all the support.

I read this blog and thought that I would share it as it some of the things which people with Multiple Sclerosis or any other Chronic Illness would want to hear. 

Living with Chronic Illnesses, is not a joke, it is REAL. To those who are friends or family with some affected by any chronic illness, here are some thing to say to them so that they know you support them! 

I believe you

We deal with 95+ invisible symptoms on a daily basis. Keyword: INVISIBLE. You can’t see them. So just because you can’t see our pain, doesn’t mean we don’t feel it. When we complain about the pins and needles in our feet, or the electric shocks that go up and down our backs, or even the blurry/fuzzy vision we get, please don’t look at us as complainers. Yes, we can be ‘that sick’. I don’t like to use the word ‘complain’ – it’s more like venting. If you had to deal with invisible symptoms, you would understand. We don’t fake these things. So please just believe us.

I am Here for You

We need to know that we have support from our loved ones. We need to know that you are not going to abandon us. Re-assure us that you’re not going anywhere. Imagine being or feeling alone. Now add a chronic illness on top of that. How would you feel? Friends and family are supposed to be there for you through thick and thin, so show us that you will always be a shoulder to lean on. This way we know who our support system is.

I want to add something of my own here. Not only do we need to know we have support from our loved ones, but WE need to BELIEVE it ourselves, and sometimes that is difficult when the depression hits in… so if we question you, please do not be angry or frustrated with us.

Don’t give up

Sometimes we just feel like we want to give up, that we are not strong, we are weak and the fatigue can make us weaker.  The fatigue we are having is not just normal tiredness, it is bone aching tiredness – sometimes not being able to stand or carry on.

Here’s a fun fact: it takes up to 5 times more energy for a person with MS (or any other Chronic Illness) to do the simplest task than those without an illness. Imagine you had weights attached to every limb on your body. Now go ahead and do your daily routine with those weights. It is hard, but we are trying to go on with life, but sometimes we need a push to carry on and not give up. 

It’s the little things that count with us. The above statements are NOT the only things you should say to someone living with Multiple Sclerosis or a Chronic Illness. Please feel free to share your thoughts and opinions. What do you think is the most important thing to say to somebody living with a disease?

15th December - reflections

So the last post recapped the events of 15th December 2013 when my MS decided it was time to announce itself to me and get me to acknowledge it. Now we are a year on 15th December 2014 - a whole year has gone, and as a friend yesterday, 'that seems a very short year'.

I agree. It only seems like yesterday that all these issues started, but it was a year ago and a lot has happened in that year. I have worked consistently since January (with a couple of breaks), have had fun, been on trips away, taken a lot of pain medication (all prescribed), and much more,

But what have I learnt?

• Well now I know what MS is, not really having know much about it before except what was portrayed in the media. 
• I know that life doesn't go as you planned it to you
• MS affects more that just me, it affects my friends and family as well
• I have a very supportive Church
• God is always beside me
• Some people walk away 
• However, others come to walk alongside you
• God has provided me with great friends
• God has provided me with work
• Relapses happen
• New symptoms appear
• I actually like having MRI's - its peaceful!! 
• Injecting yourself isn't too bad
• The Twittersphere is a great support for MS friends
• Life goes on
• Rest is important
• Pray works

And lots more am sure, but memory is struggling.

What's the most frustrating thing about having MS?

Well for me the most frustrating thing is the lack of concentration and the fatigue has meant that my love of reading has faded. I am a reader, I love reading, it helps me, takes me to another place but since January have found it hard reading. One reason was because y eye sight was not great as well. But it takes me ages to read a book and I have not read anything in about two weeks - that is not like me. 

I would rather sit and watch DVD's and play Candy Crush Saga as they require little concentration. Need something else that is useful to help build up my concentration - I miss reading. But I will persevere with it.

15th December - a year on

I am now approaching some anniversaries!! (if you call them that, as not much for celebration) in my life, and the first is today 15th December.

Last year the 15th December was a Sunday and it was when I first became sick (ok, so was carrying this illness around with me for years, but this is when it decided to come and say hello!!). 

I woke up in the morning with a headache but still went to Church which was the kids Christmas service. My head got worse during the service and afterwards I got  frustrated with a friend and stormed off into my car and went home like a bear with a sore head.

During the afternoon I started to feel worse, all achey, headache got worse, queasy and at night became dizzy. Thought my Vertigo was coming back. The worse thing for me was the next day I was due to start a new job and I didn't feel like going as was ill. Anyway went to bed for some rest.

Next day got up and was still feeling awful but went to my first day of work in Ballymoney which is a half hour drive from Broughshane. Was ok throughout the day, nervous and not sure of what I was doing. Still had headache but dizziness and queasiness were at bay.  They all came back at night. 

Next day, Tuesday went back to work, started to learn the job and was feeling the same, queasy, sick etc. Didn't help much that the next day my Dad was getting some important results due to his health, so was worried about him. And new job jitters did not help.

On the way home that night I nearly took my car off the road, was driving down the Frosses (long road) and two lanes of traffic, one going up, the other going down!! A driver decided to overtake me with traffic beside me and I did not hit the brakes quick enough and nearly went off the road! Now I realise that this was because my reactions were slower due to the MS! 

My eye sight had been affected as well, but it got worse on Tuesday  night with blurred and double vision all weird. On Wednesday I drove to work with the sight problems, and during the day started to feel worse, really dizzy and queasy and said to my work colleagues, I think I have vertigo.

Later that night it all continued to get worse. I have blogged about all this before in June, so you can go back and read those blogs. 

The Golden Gate Bridge

I have been thinking about blogging about this for a while now and decided that I will as it really inspired me and hope it inspires other people

.

A couple of weeks ago I was at a talk on Suicidal Thoughts with Dr Steve Critchlow when he told us a story about Kevin Hines who suffers bipolar disorder, had begun to hear voices telling him he had to die and days before his attempt, he began to believe them.

Kevin went to The Golden Gate Bridge in San Francisco which sees a lot of people going there to jump off - a distance which takes four seconds to fall which not many survive from. But miraculously Kevin did survive.

Here is his story from abc news

"Six years ago, when Hines was in high school, he started hearing voices. His torment became so intense that he finally decided to kill himself. One day, as usual, he attended his first class, then took a bus to the bridge, crying all the way.

"I had heard that the Golden Gate Bridge was the easiest way to die. I heard that you hit the water and you're dead," Hines said. "And I remember picking the spot. This is the good spot. I'm not too close to the pillar. I won't hit the pillar. I'm not too close to the land. I won't hit the land. I'll hit the water and I'll die."

Hines stood on the bridge for 40 minutes. No one approached him to ask what was wrong. When a tourist came up and asked whether he could take her photo, Hines said that was the final straw -- clear proof that no one cared.

He took the picture, then jumped. Instantly, he realized he had made a mistake, and came up with a plan to save his life.

"It was simply this: God, save me, A. B, throw your head back. C, hit feet first," Hines said. "And I did all of that."

The impact was crushing, and Hines hurtled 40 feet underwater. Miraculously, he survived.

Hines said his decision to kill himself at the Golden Gate came down to simplicity.

"It's this simple," Hines said. "A 4-foot rail. A tall 12-year-old could fall off."

But how did he survive, the bit not told in this story, is that God did save him by using a Sea Lion. After he jumped, Kevin was able to reach the surface of the water and upon his resurfacing he bobbed up in down in the cold water. Something brushed his legs and he feared it was a shark but it wasn't, it was a Sea Lion who circled beneath him, bumping him up and keeping him above the water so he didn't drown when his body got too tired. The Sea Lion kept doing this until he was rescued by a boat.

How incredible is that story, this guy jumped from the bridge but then decided it was the wrong decision and one the way down asked God to save him, and God did just that by sending a Sea Lion. When we call out to God for help he hears us and helps us and brings people/animals to help us. You may think it’s weird for animals to help us humans, but animals can sense the pain in humans and are a help to many a person.

Kevin didn't want to die, he just wanted to end the pain. He is like many people who try to end their life, they aren't necessarily wanting to die, just want the pain to end. And we as their friends/family/fellow human beings need to intervene and help these people in their emotional pain. I know that throughout the past few years when there were times I felt I could not go on any longer with the pain, God brought people into my life to help me and bring me through and back to Him. Those who are suicidal need compassion and understanding, not judgement.

To read more about Kevin Hines click here and to read more about The Golden Gate Bridge and the suicide jumpers go here

Flown the Nest

I have flown the nest (again), after nearly two years of living with the parents, I am now independent again and living on my own. This is the first time I have lived on my own in 32 years as have always lived with either family or flatmates.

The past two months have been focused on getting the flat ready, parents painting and decorating and me buying furniture and other wee things that one needs for a first house. It has turned out pretty nice actually and its my wee pad. Anyone who wants to visit can come visit me and there is even a spare bed if you need it.

I have been in the flat for a week now  - started off with just a chair for me to sit in, then the see-tees arrived and next week sees the arrival of the table and chairs. Bed here to, so have somewhere to sleep  - oh and most important thing is set up  -the tv and broadband!! Its sad how we are reliant on internet now, but its a useful thing to have, so in times of feeling down I can play Candy Crush Saga!!! 

The first week has been good, its peaceful here, which is good, no ambulances or no barking dogs like I had in London and Peru. It is hard getting used to living on my own and no one to talk to at times. And learning to cook again for one person, getting the portions right etc. 

I am looking forward to having more people here, entertaining etc and just having my own wee home. I am now a grown up!!

Its been a while

I realised the other day that I have not blogged in nearly two months so am going to rectify that now.  So what have I been up to in those two months -here is a low down:

JOBS

Generally working and still attending interviews and still having no luck. Its all bad though as am still temping in the Ballyclare - though because am NHS agency staff I could go any day - but am content at the minute.

And you know, all those who have decided not to hire me, well they don't know what they are missing!!

Work seems to be the only thing am content with!!! Working on all the others!!

RSA 

Last time I wrote I was embarking on doing my RSA typing and word processing classes as this is needed for most clerical jobs and something which I thought I had but haven't. Well I took the exam on 28th November, so now just waiting to get my results and hoping I did enough to pass.


TIME AWAY

Christine (my sister) came home for a few days last month and we decided to go on a wee trip together. As she had never been to Donegal before we decided to go there and stayed in the same hotel I stayed in back in July.

It was a nice time away though it rained. We drove around Donegal visiting different towns, visiting coffee shops and restaurants. We had planned maybe to go to New York last January but due to my taking sick we couldn't... so Donegal was the best substitute!!

Anyway we had fun and sister time together so that's all that matters. New York is still there and can be visited another time.