Bonny Bonny Scotland

I have spoken a lot about my MS, so thought would tell other stories about my life which do not involve sickness. So here is my holiday time!

I needed a holiday but can't afford to go abroad so decided to go to Scotland and stay with the lovely Cecily who was a strider along with me in Peru. She lives in Skelmorie which is an hours drive away from Glasgow. I flew out on the Sunday and came back on the Wednesday and had a nice few days with Cecily and her friend Marjorie.

Cecily and Marjorie are both over 60 and were worried I would get bored with them, but I tell you, it was great fun, never met a 71 year old who is a mischievous as Marjorie is, she is just as cheeky as me (if that is possible!!) 

On the Monday we went to Millport which is a lovely wee island - Cecily asked me had I ever been there before, and I said no. However, I didn't realise I had - was there when I was little and rode along the island on the back of my Mum's bike.. but was only three so I have no memory of it all. 

It was a bit of a dreary day but I enjoyed seeing the place, though did not cycle around it this time - energy levels not up to that.  

When I was in Scotland I found a love of three things - square sausage (famous in Scotland and lovely), thins (lovely bread things which can also be bought in Northern Ireland I have since found out) and Words with Friends (a great game on the phone which I play with friends and keeps my brain going). 

It was nice to see Cecily again (had not seen her since I was back in Peru in November). but weird seeing her back on home ground...she was there for two years and only arrived back in February 2014 so she is still in the settling back process - it as good to reminisce with her and hear more stories and also getting to know her friend Marjorie who I had previously spoke to via Skype in Peru and also met briefly when she flew out to visit Cecily. 

A total clear out!!

Not content with having MS... my body also decided it was going to have Irritable Bowel Syndrome - IBS.... this I have had since 2012 and is because of being ill in Peru.

When I was in Peru living in Arequipa for a year I was plagued by illnesses and most of them were to do with stomach problems. My little delicate stomach could not cope with the new food it was being offered in Peru, even though it was gorgeous food I must have ate something which disagreed with me which left me having stomach problems from March onwards.

I was given Metronizadole to help with the stomach problems and was on these tablets for 21 days - oops, because apparently you should only take these 7 days at a time. These tablets made my stomach worse and I ended up with an inflamed colon so had to go to see a Peruvian doctor and was given more tablets and had to eat chicken, potatoes and bread for one week.

Anyway due to all this I ended up developing IBS and was referred by my doctor to a Gastro specialist  - had to visit him in February and then on 19th May was scheduled to go for a Colonoscopy - very pleasant procedure!!

The day before I had the procedure I had to empty my bowels which meant drinking two pints of this horrible horrible drink which made my insides gurgle and then cleared my bowels out - so disgusting I know but I did weigh four pounds lighter the next day!! Oh and I was not allowed to eat from 5pm Sunday onwards!!

I went for the procedure and it was ok - the people were very nice and I was given a nice wee drug to help me get through everything - it was over and done with in 20 mins and three hours after I went into the hospital I was out again and ready for some food and a sleep.

The outcome of this Colonoscopy confirmed that yes it was IBS and there were no pollops so nothing else dangerous. Thank goodness.

I have decided I am going to take shares out in the NHS as am at doctors/hospitals a lot - the joys of a chronic illness!

Three month review!!

So I was diagnosed in January and was told that I would have a follow up appointment with my neurologist  - he is not an MS Specialist, and my Dr decided he would like me to be seen by an MS Neurologist  - these guys reside in Belfast City Hospital and with over 4000 MS sufferers in N.Ireland they are very busy people!

The top man is hard to come by and there is a waiting list of six months, but three weeks after my Dr saying he was going to make a referral for me, I got an appointment card to go see the top man. I was very surprised and grateful.

My three month review actually happened four months later... which isn't bad really. My appointment was scheduled for  7th May - so off we went to the City Hospital to see this man and see what he had to say about my MS - he confirmed it was Relapsing Remitting MS and was surprised that I had had relapses since I was originally told I had mild MS! Not true! 

We had to wait for two hours to see the neurologist because like I said before, he is a popular man and very busy - there were loads of people in the waiting home and it was a bit scary as there were people in wheelchairs and people who could barely move - it was a hard wait as that could be me one day maybe or maybe not.... but its one day at a time! 

Because my man was busy and it was an initial appointment I was seen by another guy who did all the preliminary's - checking my reflexes etc and taking my case history. And then I saw the man himself who said that yes, I have relapsing remitting MS, and he wanted to see me in another three months and also have an MRI done again to see how the lesions are doing - have they gone and are there new ones etc....

After arriving for my 11am appointment at 10.45am, I finally left the hospital just after 1pm. I was tired - emotionally, mentally and physically - time for lunch and then home. 

And even though I had changed my neurologist I actually got my three months review appointment card with my original neurologist in June with the appointment scheduled for August - bit late really! Glad I got changed. 

Re Re Relapse!!

It's been a while since I updated my blog - so here goes for another story in the life of me. In last blog I mentioned I had started a new job in Ballyclare  - and am pleased to mention I am still in this job 11 weeks later - it is ongoing til November  - so unless I get another job I can continue there for  a bit which means a bit of stability for me - always good.

However, I do not think I have done more than two full weeks here due to hospital appointments, trips to Scotland, bank holidays, job interviews and a relapse.

Yes on 10th June I was signed off work for a few days due to being ill - again! So what symptoms did I have this time around

• Well I lost feeling in my right hand and arm - went completely numb and stayed like that for a few days - but the sensation in my right side is still weaker than the sensation in my left hand side. 
• I was dizzy - really dizzy - this is one symptom I hate but keeps coming all the time... anyone who has had Vertigo will understand - feel like you are walking on  a boat all the time. 
• Fatigue - again a symptom I deal with all the time - and this is not just normal tiredness - it is a tiredness which affects the whole body - make the whole body ache in pain and even if you sleep 8 hours during the night, you still wake up the next morning yawning!

This relapse lasted a few days and I was back to work a week after being signed off. And during my week off work ill - guess what I spent the week doing - as well as resting - you guessed right, having coffee with friends!! A good way to rest!

Working Girl!!

As my last job finished due to my second relapse, I was again unemployed. However like before a job was just round the corner (still temping via agency but better than nothing).  I mentioned previously that I was meant to go to Holywell full time but was unable to - however the nice people did not forget about me and they offered me part time work for three weeks. I accepted and started there on my birthday -  a good birthday present I thought.

For those of you who don't know what Holywell is, it is a psychiatric hospital, so you can imagine the jokes people made to me... 'are they keeping you in' etc... funny but its sad people have to go there for those reasons. I was working on one of the computer systems doing data validation amongst other things. 

I enjoyed the job, getting to know more about the trust and meet different people. The job was initially for three weeks, 9am-1pm but apparently I was doing such a good job they kept me on for another three weeks. Very grateful to them.

As this job was ending on 16th May I was wondering what was going to happen next. But I needn't have worried, someone up above was looking out for me. During that day I received a phone call from another agency saying there was a temporary part time position available, again within the Northern Trust, in Ballyclare, 20 mins from my house. I decided to go for it and am still there eight weeks later which is a record in my jobs this year.

First job lasted 6 weeks and finished due to relapse, second job lasted six weeks and ended due to lack of work for me and now third one still going - positive progress. 

At the minute due to fatigue and pain I can only do part time hours, but am aiming to go up to full time and have applied for an had couple of interviews for full times jobs, so fingers crossed, prayers etc.... 

Relapse No 2

As have mentioned before, I had a second relapse which happened on 22nd March. What happened? Well  I experienced numbness down the right hand side of my body starting with the hand and arm and moving to the leg. I also experienced great pain in my right leg and could barely put weight on it, so walking was difficult and driving was out... again! I was also dizzy, suffering from fatigue and had pain in the head and behind the eye... old symptoms back again and new ones interspersed. 

I still have the pain in my leg and the sensation on my right hand side is still not as strong as the sensation on my left hand side (Dec-Feb it was the other way around - so they are taking turns!!)

What did I do in the three weeks off work during relapse? Well I rested as well as had some fun. The doctor did tell me its important to get out and keep my spirits up. So again I had visits to coffee shops, lunch and dinner dates as well as going to see Miranda Hart stand up show in Odyssey, Belfast.

Here is a picture of Miranda in case you have no idea who she was - she is also known as Chummy from Call the Midwife.

Anyway, the trip to Miranda was my birthday present from last year bought to me by my sister - it was a great night, really funny and definitely took my mind off feeling sick.

Back to Work

I mentioned in a previous post that I started a new job on the 16th December and ended up having to leave on 18th December 2013 due to taking ill. I was then signed off work til beginning of February but decided not to pursue jobs or worry as God would help.

On the 31st January I got a phone-call from the recruitment agency I was with saying there was a job in the Northern Health and Social Care Trust as Information Analyst (my previous job) but this time in Braid Valley in Ballymena. It was full time but I asked if I could do it part time due to my illness and they said yes - asked me when I could start and I said how about the 10th February and they said yes - so here I was again on the job market. It felt good but also a bit scary as was not sure if I could cope with it.

I did cope with the work and enjoyed it though ended up coming home and going to bed for a sleep afterwards. I worked four weeks for 9am - 1pm and then two weeks 9am - 3pm. 

My health as doing ok, had the odd niggle and pain and was tired a lot, but thought I was getting back to normal, whatever normal may be! But this was to change on the 22nd March.

I noticed at dinner time during on the 22nd that the grip in my right hand was not great but hoped it was nothing. But later on that evening when at the cinema (for movie lovers, saw Non-Stop!) and the rest of my right hand side started to get numb and I lost sensation. On the Sunday was feeling worse and again on Monday. I still went to work on Monday but then ended up coming home ill as after a talk with the MS Nurse she said I was having a relapse. Made a doctors appointment for next day and after that visit was signed off for three weeks. So there was employment gone again.

The worst thing about this relapse was that I was meant to start a job in Holywell Hospital which would be going on from March to September, but due to this relapse the boss decided it was not a good idea as they wanted something full time and she felt I was not ready for full time. She was correct.

The next few days

When I first was told I had MS I felt numb, it was hard to take it and took me a while to process it - think its a daily ongoing process especially in the first year as you are learning more about it and how it exactly affects the body and your life.

But what exactly where my thoughts/concerns on the initial few days?

16th January 

The scariest thing for me about my illness was (and still is) the loss of memory. I couldn't remember taking my tablets, or things which happened the day before or even 10 minutes before. I know you might be saying, but this happens to everyone, but its still scary especially when still in early 30s.

I did not cope at all well that day with the news.

17th January

God has a purpose for every life - something I was told during that week, but it made me think - what was his purpose for mine because since February 2013 it was like a roller coaster for me and I found it hard to see what my purpose was, The main question I was asking that day was "Why have I got MS?"  ... but God was not giving up on me, on my reading that day I came across the following statement: "Nothing happens to the child of God by mistake" (Barry Coombs). I suppose I needed to trust God that the MS is for my good and not my ill. Not easy though.

18th January

Today I decided to write down the good things and focus on them and not the bad. Here are a few good things from that day:

• Coffee with a friend
• Phone call from ex colleague in London
• Drove for the first time in four weeks
• Got flowers and a visit from my Aunt and Uncle 
• Phone call from friend in London
• Skype with another friend

Emotionally it was a very mixed day.

19th January 

Emotionally this was a bad day and also physically as well, but yes there were positives:

• Made it to Church
• Got hugs and kind words from many people
• People prayed for me

20th January

Emotionally again this was a bad day. I felt that now I had the diagnosis I was on my own and had to learn how to deal with it by myself - which is partially true - no one else can help you deal with things in your head, that's up to you - but I did have people to support me so not alone on the support side.

Positive thing about this day was I met up with two friends from London who were over on a holiday. Even out of the city people don't forget about you.

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During those following days and weeks I had many an phone call, letters, visits and outings from people all wanted to encourage me and let me know their love and friendship for me. I had no faith in myself during this time and asked my friend why she seemed to have faith in me, and the answer was: "You are intelligent, gifted, have faith and God has a plan for your life"

So what did I have to do - well I had to give my MS to God, leave it with him and trust him (easier said than done) and take one day at a time.

The day after

So as I have told you on the 14th January I was diagnosed with Multiple Sclerosis (MS) - so what went through my head that day and following days?

I felt numb and asked questions like why me? what does this mean? how do I come back from this? can I still work? Will I ever see again?

After I found out I did not tell many people - just family and a few close friends whom I know where worried and praying. If anyone rang I told them but on 15th January I was more open to telling people - it is best being honest about these things than not as people would find out anyway, and also the more people who know the more people praying.

Two of my friends came and saw me that night to talk and support me and my family  - it was just so good to see them and again I will say that during this time the support for me from people was amazing.

I was trying to process everything I was told that day, and decided the best thing to do was take the time for it to sink in and take one day at a time. Did not need or want people rushing in me to things like work etc. I was not ready for work as eyesight and balance still not great - what my body needed was rest. And what I needed was support which I knew I was and would be getting.

The next day I woke up, the 15th January I was ok during the day. My mind was being kept busy as I was out with a friend for lunch and talked over things with her, but then in evening I hit a low and I was not able to process the MS and was waiting for the realisation I had a chronic illness to hit me like a brick wall. But my friend did say one thing which I had to hold on to "you are brilliant, you see"  - meaning I had the ability to get through this.

The neurologist did say that he thought I had the illness from 2006 but wrongly diagnosed a few times, and after thinking back through those years, a lot of my problems made sense to me:

• Unexplained chest pains
• Fatigue (feeling bad because did not have the same energy as other people)
• Vertigo (had three bouts of this between 2006  and 2012)
• Urinary Tract Infections (four between 2012 and 2013)
• Depression 
• Stiff Joints
• Hand tremors
• Headaches

Suppose you can say out of the negative that was positive - realising there was a reason behind my crazy health. My friend advised me to find the positive in everything. Trying to. 

Love and Encouragement

I have said in previous posts how thankful I am for the love and support of my friends and family during my illness and also they have been great since diagnosis of MS as well. But its not only friends and family who have got me through - its my relationship and belief in God that has helped me carry on day by day.

Throughout the time between taking ill and my diagnosis I kept a diary of how I felt and wrote little things in it which  helped me on down times look back and feel. One of the things people did was send me bible verses and during one week I got the same bible verse four times from different people and it helped me. The verse was Jeremiah 29 v 11:

"For I know the plans I have for you, "declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future" 

Even though I did not know what was going to happen, I was able to take heart in the knowledge that God knows the plans he has for me. Whether I like MS or not, I have it and I believe that God will help me through living with it and hopefully use me to help others and maybe even use my MS to help others as well. 

Here are some others that were sent tome - I will leave you to look them up yourself, if you don't know them off by heart that is!! 

• Proverbs 3 v 5
• Joshua 1 v 5
• Joshua 1 v 9
• Deuteronomy 31 v 8
• Psalm 31 v 3-4

I got lovely messages as well from people and one which meant a lot to me came from two blessed friends in Peru on 1st January. 

"We will be praying for you and the best is that God is in control of your life. Only God knows our body and will take care of your. We love you and we will be in a strong embrace with you"

During my times of feeling low I had friends to pick me up and help me feel surrounded by God's love.  In one day (6th Jan) three people rang the house to see how I was and make sure I was ok and I had three people come and visit me as well. These little surprises were good and shows that if you just sit back and relax good things do happen and life not always about planning. Is God teaching me to be spontaneous? 

The trick I had to learn throughout this time of waiting for diagnosis and even after diagnosis is being content - being content in the situation I am in - you cannot change health situations so worrying about it does not help, only brings on stress - the best thing to do is surrender all to Jesus. 

D-Day

14th January - D-Day, the day of being diagnosed with Multiple Sclerosis. My appointment was not until 4pm in the afternoon so I had the whole day of waiting  - a whole day of worrying about what was wrong with me, if anything. I was opening my neurologist would say MRI was clear and I was OK,  and itwas just a viral infection and I would be better within a few weeks.

I woke up feeling nervous and sick but knowing how I might feel one of my friends came in the morning to visit me and keep me calm. It was good to have that distraction and not think about the afternoon and what it may bring. I am thankful for all support for my friends and family from 15th December onwards, its been amazing.

Lunchtime came but was feeling too queasy to eat. Finally the time came to leave for hospital - we all went - my parents and me. We arrived in good time as car parking at Antrim Area Hospital is a nightmare. We sat in the waiting room and finally my neurologist came out and called me in - so up we get and in we go and sit down we do!

The neurologist starts off asking me how I have been, have my symptoms improved and doing all the tests he did in hospital - checking the sensation/feeling and balance etc.  Then he showed me my MRI scans - I saw my brain - I have proof I have a brain. But it is a not a pretty sight as it is covered in white spots (lesions)... all over my brain where these spots, was heartbreaking to see.

He showed us the brain as a whole and then sowed us it in sections - like the way you would cut an apple slice by slice... this showed us the areas of the brain most affected by the lesions. The left hand side had more than the right hence the reason I went numb and why I have trouble with memory and finding the right words when speaking. However apparently its meant to make you less organised - but am still very organised person so least one thing not been affected.

I had lesions on the back of the brain and this is what caused the eye sight problems to occur - the double and blurred vision. The symptoms go when the lesions decrease, but unfortunately more lesions can grow.

After we were shown my brain, the neurologist told me that I had Multiple Sclerosis - I was shocked and felt I had been punched in the stomach. I looked at my parents and they looked torn as well - but not as shocked. I heard later on that they and my sister had come to the conclusion that MS is what was wrong with me. They didn't tell me as did not want to worry me - which is fair enough.

Though they kind of guessed, it still did not take away the pain and reality of my diagnosis and that I would now be living with a chronic illness the rest of my life. We had to go home and process all the information and learn how to live with this individually and as a family. 14th January was a hard day but at least now we had answers and a foundation to build on.

Breakfasts, lunch and MRI's

Now we are into the New Year, it is 2014 - a year I thought would start off well, but started off with a wee bump in the road. But there is always a silver lining and the silver lining in my illness was that I got lots of trips to coffee shops and time spent with friends.

On New Year's Day I went off to Carnlough for afternoon coffee with Anna, who informed me that day that she loved me because the bible told her to, when I asked her where it said that, she said, it says love your enemies! She has a very good sense of humour.

Second of January it was lunch in the Crannagh near Portstewart with more good friends, then the week finished off with coffee with another friend, this time at home. The weekend saw me going to the Prayer Breakfast and then a fellow Latin Link Strider came for lunch on the Sunday.

January continued like this, people coming for lunch, coming to visit me, taking me out to coffee, taking me out for lunch and taking me out to dinner.

The third week of January was a wee bit different, there were coffee shop visits and people visiting me at home, but there was also medical trips - along came the scheduled date for my MRI - the 13th January. Off we went to the hospital in order to see whether I had a brain, well the CT already confirmed that I had! Typical of hospitals we waited 45 minutes for the MRI to take place. Finally my name was called, I was weighed and measured then had to change into a hospital gown and off I was taken to the big MRI machine. I have had an MRI before so wasn't scared about it.

In case you have never had an MRI I have included a picture of the machine for you - that is not me in it, just some random person. 

It is a very very noisy machine so you are given headphones to wear to drown out the sound. I just lay in the machine and prayed, slept and it was ok  - it was over in about 30 minutes and then that was it, off home to await the next day when we would see the neurologist and find out exactly why I had shadows on the brain, or as they came to be known jokingly as aliens on the brain. 

Christmas

This was to be my first Christmas back home in Northern Ireland as a resident of the country since 1999. I had mixed feelings about Christmas but never thought for one moment my Christmas would be like this, ill.

Christmas Eve I got out of hospital and spent the evening at home, half watching TV - could only see out of my right eye and only when left eye was not open  - when both eyes were open it was a total blur. So to help me Mum put a bandage over the left eye of my glasses and I wore them.

I looked like a pirate, was just missing the parrot side kick! I did not have a real parrot or a toy parrot but I substituted with a toucan. Can you spot him on my shoulder  - the little rose between two thorns!!

Christmas Day - I got up opened my presents, went back to bed again and then got up for real at midday ready for family coming and lunch. Most of that day was spent eating, sleeping and talking to family - sounds like a normal Christmas!

Boxing Day - another day spent eating and sleeping - but there was something odd about me, more odd than normal! My left eye had gone weirder - instead of looking straight out or the pupil being in the middle of the eye, it has moved to the left hand side so was squinted looking.

In the evening we went to my Aunt Joan's house for family get together and my second cousin Callum was there and when he looked at me told me I looked freaky and weird - but he also ran away a bit scared... made me giggle!

The rest of Christmas week up until New Year's Eve was spent eating, sleeping and having visitors. On New Year's Eve I went to my friends house for a little get together which was lovely, we ate, talked, listened to music and played monopoly.  Then we saw in the New Year together - and now we are in 2014.

And I am out...

Tuesday 24th December - Christmas Eve - and I am still in hospital, wondering if I would get out to have Christmas home or would I be celebrating Christmas in hospital. All bases were covered anyway and I picked my menu for Christmas Dinner.

I was still waiting for my MRI and thought was getting it at 9am when someone told me they were coming to get me for the scan, but after an hour of waiting, I was told that was a mistake and they wanted to take me for a CT which I already had and I wouldn't be getting my MRI that day.

I was very tired, and feeling rotten that day and broke down into tears, real gasping for breath tears because I was upset, worried about what was wrong with me, and annoyed at not getting what was promised me. The nurse had to come and calm me down and told me not to cry as it would make the banging headache I had, bang even more!

The doctor came to visit me and he was very sympathetic and said he would do all he could in regards to the MRI. He still didn't know what was wrong with me or wasn't willing to tell me would probably be the correct answer.

About half an hour after the doctor visited me, he came back saying that I would not get my MRI before Christmas, and the earliest I could get it would be 13th January - so I had three choices:

1) stay in hospital over Christmas with the hope of getting an MRI sooner, which could not be guaranteed

2) go home for Christmas and wait for MRI in January

3) Go Private

I rang my parents in tears, but the doctor ended up having to talk to them as I was a mess.  During all this my friends arrived to see me  - and could not find me as I had been moved that night - but when they found me, I was still in tears so they had to calm me down. Then they spoke to the doctor to find out what was going on as I was not making much sense. He promised again that the MRI would take place on 13th January and he has booked it for me.

Dad meanwhile at home was sourcing private MRI but due to Christmas, the earliest I could get was 10th January, so we decided we would wait until 13th with the NHS.  And I was to get out that day for Christmas yeah!

To calm me down and cheer me up, my friends took me to the hospital cafe and they had to take me in a wheelchair as I could barely walk or see - it was quite cool being pushed around in a wheelchair. On the way to get coffee we bumped into my neurologist who asked me had I got my MRI and I said no it will be on 13th January, so he looked at his diary and booked me in for the 14th January. Brilliant news, would not have to wait so long for a diagnosis.

After coffee time they took me back to my bed, left me and after horrible cornbeef salad for lunch I slept. However during my sleep I was awakened by a nurse telling me I was going home now and she was moving me to the discharge unit - so I had to quickly pack and she took me round, again on a wheelchair. I sat in discharge for ages waiting for my letter and drugs so I could go home.

Finally at about 3.30pm my parents were there and I went home and to celebrate my getting out, I had a burger - after all that hospital food it tasted so good.