Saturday 20 September 2014

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!!

Monday 8 September 2014

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.