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.