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.

Russian Roulette!!

It is hard to believe I have been on the MS drug Avonex now for 11 weeks. And last week I had the privilege to go to Antrim Area Hospital and collect the next three months worth of drugs and deliver my big box of sharpies (used needles).  Now I am stocked up for drugs until January.

The drugs have to be kept in the fridge so am currently monopolising the whole top shelf of the fridge.

So how have I been getting on with the drugs? Well I inject on Friday nights and every weekend is different in terms to reaction to the drug. It has affected my mood, my energy levels and left me feeling like am getting the flu at times. I am having trouble sleeping and having to fight off headaches.

However on the 10 th weekend I thought my body was starting to get a bit used to it as I was relatively OK. Had a headache, trouble sleeping and very tired but apart from that nothing else, the mood was OK and I even managed Church and a walk on the Sunday.

The doctor did say that it would take up to three months for my body to get used to this alien drug hitting my system every week. I tell you my legs haven't got used to it, they are sore from the injection site and I constantly have a bruise on each leg!!

Though this is now the 11 th weekend and it has been great. I was tired on the Saturday as per usual with me and nothing else more was strange until the evening when I got shooting pains down my right leg. It was sore during the night and stopped me from sleeping. I thought it might have passed by the morning, but it was so bad in the morning I could not put any weight on it without pain - so that meant no driving either so Sunday, been spent sitting in the house watching TV and working on the PC.

Its interesting every weekend waiting to see what will happen, like Russian roulette! . hopefully it will settle down soon. But at least I have access to drugs to help me control this illness, have to be thankful for that, as without the drugs it could be worse.

Another Psuedo relapse

The MS drugs I take are meant to prevent me from having relapses, but since being on them 11 weeks I have had two psuedo relapses - the first one I have already blogged about and the second one happened in the first weekend of October.

I lost the power in my left arm again, it went from being numb, to pins and needles, to being heavy and then being really sore and hot. I couldn't carry things with my left hand otherwise they would be liable to fall and break.  As my Mum told the neurologist at our last consultation, we have had a few broken cups in the house!!

This started to happen on a Thursday and all weekend I felt under the weather, was sore and tired all the time too (no different than any other day, am always tired). I tried to get on with things the best I could as that's all we can do.

On the Sunday night I went to church and was standing up to sing when my arm started to shake uncontrollably, at first I though maybe it was the power of the Holy Spirit!! but it continued throughout the whole service and it scared me. I knew there was no way I could drive home so had to get my friend to drive me home again.

When I got home, my Mum was worried  - though I knew it was related to my MS but new things scare me still - it is a learning process this MS. We rang the on call docs who advised us to go to A&E so we went there and saw triage nurse who was very unhelpful. She said we needed to wait for the doctor but the wait was 5 hours so we decided to go home as the best place for me was bed at that time of night (it was around 11 pm).

I phoned the MS nurse the next morning and she said it was a new symptom and we will have to monitor it. It has not happened since though which is great.

I still suffer from numbness and pins and needles from time to time in both my hands and feet. Oh the joys!!

What's been happening?

It struck me the other night that I had not updated my blog for a while, so thought I should get on and do it now. But am unsure of what to write about really.

As you all know I am on the look out for a permanent job, well at the end of September I thought I had found that as was offered a full time permanent position in the Northern Health and Social Care Trust, but due to fact I have misplaced one of my certificates of RSA Stage 2, I was unable to prove I had this and thus unable to take the job.

I was very disappointed at this and frustrated as its what I have been wanting, a permanent job. Although I was concerned about going full time as I did not know if I would have the energy to carry this out as am usually ready for an afternoon nap come 1pm after 4 hours work and driving to and fro work. But I was prepared to try it and trust God would see me through.

But I do not have to worry about that now. As mentioned I was disappointed and frustrated and there were tears as I felt that nothing has been going right for me for the past two years (not strictly true as there are things I have to be grateful for)... have faced cultural shock on re-entry, been seeking employment, found employment then made redundant, which led back to more job hunting.

Finally I got a job then took ill, was diagnosed with MS, had to go through processing this. However have had part time temporary work since January so God has been looking out for me there and am very grateful. I know since he has been looking out for me, though with my health it seems he isn't at times, I know he will look out for me and provide what I need. In the end of the day he knows what we need better than we ourselves do.

So maybe full time isn't for me yet and I will keep temping in my current part time job until God provides another route for me to go down.

Poetic Flow

When I was in high school I started to write poetry, and one and off between 1995 and 2008 I wrote poetry but between 2009 and 2014 no poems flowed out of my brain. However, more recently I have turned back to the poetry and have written a few.

All my times, past and present can be found on another blog, my poetry blog which I set up in 2008. To go to the blog please click here. 

I used to write poetry as it helped me process thoughts etc and I found it quite therapeutic and have no idea why I stopped writing. But, I am glad I have picked it up again as it is good for the mind, keeps it ticking and it is like therapy - helps me process what is going on inside my head. 

Here is one which I wrote recently to whet your appetite!!

Wonder and Awe

You walk across the room

The confidence in your swagger

The secret in your eye

Everybody wants a piece of you

A word of wisdom to ease the pain

Or a comforting smile amongst the hurt

I look at you in wonder and awe

I wonder about the depth behind you

And am in awe of the power you have

The power your have over others

The way they follow your every move

And yearn to be in your presence

They all want to be your friend

They all want to be someone special

But all you want is me

Jo Anne Kennedy

September 2014

Eight month review

I feel quite blessed that I have been able to see my consultant twice already and am on the 19th September (yesterday) I saw him for the third time. 

I get uptight and nervous before I go to see the  consultant, but this time was nervous because I knew I was going to hear the results of my second MRI which took place on 22nd August. I was hoping that  the lesions which were on my brain had decreased and no new ones had appeared - what was I got to hear?

My neurologist is a lovely guy, very laid back and easy to talk to. He said so you had your MRI done, and I said yes, have you seen it, what is the verdict? He had seen it and this is what he told me..... 

From my second MRI it showed that I have three or four new lesions on my brain, they are small but they are still there. And none of the previous lesions have shrunk, but also not of them have gotten any bigger so that is positive. It is not the news I was wanting to hear and it was hard to hear - felt gunked. 

The other positive thing is that the lesions are just on my brain and none have been found on my spine, which is a great thing. 

I have to have another MRI in a few weeks time to see how things are progressing, Should get used to lying in that machine..... probably the third of many!!

We also discussed my medication and how it was affecting me, he offered to change the medication but we decided that its best to stick with Avonex for a while as it does take a while for your body to get used to it and for it to show any working effects.  We are going to monitor this and re discuss at our next meeting in December.

Pseudo-Relapse

I mentioned in a previous post about injections that on the 24th/25th August I experienced what I thought was a relapse but my consultant think was a pseudo-relapse.

What happened? Well on the Sunday my mood was really really low, I lost the power in my left hand, suffered from pins and needles in left hand and left foot, my left leg and arm were a bit numb and at times could not feel my arm or hand. 

It is hard to know if its a relapse or a pseudo-relapse - what is the difference? Well a relapse is an actual worsening of the MS. It can include the aggravation of an old MS symptom or the onset of a new one. So my last three relapses were definitely relapses because I got new symptoms with them. 

A relapse lasts at least 24 hours in the absence of a an infection or fever. In contrast a pseudo-relapse is not a worsening of the disease but its only temporary flare up on symptoms that have occurred before. And I did lose power in the left arm/hand during the first episode in December. However, this time it last a few days so could have been a relapse as pseudo-relapses usually only last for 24 hours or less. 

Symptoms of a pseudo-relapse are not caused by new damage to the central nervous system but can be caused by exposure to heat or an infection. I did not have an infection or was exposed to heat so think it was probably the Avonex that cause the pseudo-relapse as that can happen.

Nerve damage from MS can make you very sensitive to even small rises in body temperature e.g a fever, sunbathing or a hot bath. Mild infections, including viral upper respiratory infections (such as colds) and urinary tract infections. Once these infections pass, symptoms should get better. More server infections can cause a true relapse.

But whatever it was, a real relapse or a pseudo relapse - I don't like having them. 

Injection Update

On the 8th August I started on my MS drugs, which is a weekly injection of Avonex. It is hard to believe that I have now injected seven times. I inject on Friday nights at around 9pm then off to bed shortly after that and try to sleep.

The first two weeks I slept the whole night through but since week three I have been finding it hard to sleep, waking up in the night usually with a thumping headache. And Saturdays are usually a bit of a right off as am not really fit for much. I usually get out of bed around 11am and just laze around throughout the morning and usually rest of day  - though I do try and get out at least once throughout the day.

Am hoping that as the week's go on my body will get more used to it and Saturdays will become mine once again - and I can get out and do stuff.

My reactions to the injection have varied from week to week. I have already talked about week one in a previous post so will move onto other weeks. 

Week two (August 15th) was OK - had a bit of an achy body, was very tired throughout the weekend and did not do much, though did manage a trip out to Downhill on the Saturday and came across these wonderful creatures

Week three (August 22nd) was not a great weekend all round. Was really tired, body ached, head banged but the worst of all was my mood - was really not in good shape all weekend - angry and everything annoyed me and was emotional too. Managed to go to church this week which was my first time at West Church since end of June (though had been to other two churches on two of the summer Sundays).

However this was the start of a bad week as it also saw me have a relapse, or what the consultant is now called a Pseudo-relapse due to the Avonex  (more on that in another blog post)

My mood got a better during the week and then we are on to week four (August 29th). The weekend the mood was OK, but was tired and feeling queasy etc but managed to go to a friends house on Saturday afternoon and church on Sunday morning - but the rest of it was spent just resting as head was really quite sore too.

Week five (August 5th) - was OK but not great, head sore and really tired but managed to meet friend for lunch on the Saturday but only managed 40 minutes out and then rest was called for. And again got to church on the Sunday morning. The rest of the week was OK just usual tiredness etc

Week six (August 12th) - a bad weekend - woke up at 6am on Saturday morning with the worst headache ever. Was meant to meet a friend for breakfast but had to cancel on her as was feeling so awful. Spent that day basically lying on sofa watching TV with no energy and sore head and body. on Sunday was OK but very dizzy but went to Church, out for lunch and then had a funeral to go to. During that evening was so tired and the rest of the week did not feel well all week - was so dizzy and had no energy to do much but went to work anyway as don't get paid for sick days.

Week seven (August 19th). The actual injecting of myself has never been bad, just a sharpness when needle hits skin and goes into my leg. But last night on the seventh injection, it was the worst - it really hurt when needle went in, and my leg went into a spasm and got pain up and down the leg and it bled quite a lot  -think I may have hit a wee nerve/artery.

I slept OK but when I woke was quite sore and feeling weak and most of the day been feeling queasy, sore and had a headache. And also quite tired. So that's week seven, lets see how the rest of the week goes and how week eight and onwards go to.

Splish Splash

At my last appointment with the Consultant in July, he told me how I should be doing exercise which would help with reducing fatigue and easing the muscles and he suggested either walking, swimming or cycling as these three are the best for people with MS.

I already go walking though have not done as much as I should have been in the past couple of weeks. I like cycling but have no bike and can't afford to buy one at the moment. 

I loved to swim when I was younger and was quite good at it, but when I hit my teenage years I became quite self conscious and didn't like swimming much - I had to go with school from ages 11-14 and would go with friends after school sometimes, but it was more like splashing about and diving then swimming. In my 20's I went to Aqua fit a few times at University. I think since then I have been in the pool once since I was 25..... so have not been swimming in 7 years.

I don't like swimming now because have got out of the way of it, and am still self conscious at the pool. But since it is the best form of exercise for people with MS and even for anyone, I decided I would bit the bullet. I put it off but then bought a swimming suit so since I had spent money on that I thought right I need to go.

So on the 28th August I set out to go swimming. The last time I was in Ballymena Pool was aged 12 when I went swimming with my cousins, but we spent most of time on the slides then. I was nervous going into the pool and more nervous because there were lots of children/teenagers there and they make me nervous - the teenagers especially.

But I was there so I needed to do it. I got into the pool and stood for a bit and then started swimming - well I only maneged half a length, and the whole 25 minutes I was in the pool I only managed to go 6 half lengths, which really is three lengths. I just did not have the stamina or energy to do more. But I was proud of myself for going. 

I was in agony that afternoon/evening and the next day - obviously my muscles were protesting at the exercise been taken. 

The next week I went on the Friday afternoon and it was quiet, only four others in the pool and I managed to swim 5 lengths - yeah was getting better.

I have not been swimming since that, but I have been in the pool as part of an Aqua Zumba class. Have attended for two weeks on  a Thursday night, and its good though tough on my legs and by half way through am ready for a lie down.... but am glad am going as its fun as well, lovely group of ladies and its exercise. 

Will go back into the pool for a proper swim soon. Am enjoying the new challenge. I am not a great swimmer and my style of swimming is quite splashy but practice makes perfect!!

Already Achieved.

In my last post I wrote about my bucket list... well while thinking about it and writing it I realised that in my 32 years I have already done quite a lot of stuff which would have been on my want to do before I die list when I was younger - along with other stuff that just happened:

1. Visited South America - well only Peru but still
2. Been to Machu Picchu
3. Gained a Bachelor's degree
4. Gained a Masters degree
5. Seen U2 live in concert - a few times. 
6. Travelled to many countries: South Africa, Morocco, Germany, France, Serbia, Bosnia, Croatia, Iceland, Mozambique and the USA to name a few
7. Went on Safari
8. Been to Disneyland
9. Seen the Grand Canyon
10. Sat in the cockpit of a plane whilst airborne (for the whole flight)
11. Learnt another language
12. Lived in another country for a year
13. White water rafted
14. Went Go-Karting
15. Jumped from a cliff into the water
16. Ate Guinea Pig
17. Been to a few concerts: Space, Divine Comedy, Duke Special, The Pierces, Robbie Williams, Green Day, Bon Jovi to name a few
18. Rode on the back of a motorcycle
19. Had a poem published
20. Seen live TV shows being recorded: Little Britain
21. Had my name featured in a book as part of the research team
22. Met the Corrs (Irish Band)
23. Gone Canoeing
24. Planted a tree
25. Had a water fight - (or a few)
26. Climbed a tree
27. Played rugby at Ravenhill
28. Watched New Zealand play rugby against Scotland
29. Watched New Zealand play rugby against the Barbarians
30. Saw Brazil play football against Sweden
31. Saw Newcastle United play football
32. Had my foot bitten by a penguin
33. Fed a bottle to a sheep
34. Had an article published in a newspaper
35. Seen Ulster play Rugby live a couple of times
36. Saw Miranda Hart live 
37. Been to a few theatre productions in London's West End e.g Much Ado About Nothing, War Horse, The Lion King, Fiddler on the Roof, Les Miserables to name a few 

Am sure there are plenty of other things I have done which have been an achievement, but those are a start. 

Life: Bucket List

For a while I have been thinking of doing a bucket list but never got round to doing it and then in January when diagnosed with MS, thought yeah this is something I want to do... make the most of life. I know that no matter what, we need to make the most of everyday... and I am trying to do that. But its always good to set goals.

So have written by bucket list (in no particular order) - and if anyone wants to help me strike off things on the bucket list, would appreciate support/help.

1. Visit New Zealand
2. Watch Ireland play Rugby
3. Write a book
4. Get book published
5. Jump out of a plane
6. Visit Prague
7. Watch Mighty Ducks Hockey team play
8. Find a cure for MS
9. Own a fish called Fred
10. Swim with Dolphins
11. Go fishing
12. Learn to weld
13. Run a Marathon
14. Visit Brazil
15. See the Iquazu Falls  in Argentina
16. Climb Slemish
17. Hold a Toucan
18. Go to Wimbledon
19. Meet Bono
20. Stand underneath a waterfall
21. Help others the way people helped me
22. Learn to dance
23. Learn Pottery
24. Do a somersault in the air
25. Learn Makaton
26. Achieve my ideal weight
27. Fly first class
28. Go whale watching
29. Jet Ski
30. Gallop a horse along a beach
31. Drink Champagne and Eat Strawberries in bed
32. Go Surfing
33. Get Married
34. Go Paint-balling
35. Milk a cow
36. Visit Auschwitz
37. Go to Israel
38. Swim in the dead sea
39. Own a Border Collie dog
40. See the Northern Lights 

Have 40 so far, it might grow, so will add to it. 

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.