I'm still here ;-)

I started my new treatment on 12th November and apart from it being a *very long* day despite Justine being there, it was pretty uneventful.

The reason we had to be in hospital was in case our heart rates dropped after taking the medication.  It seemed such overkill for just swallowing a small capsule but its better to be safe than sorry.  We both had a wireless ECG machine attached to us and every hour the nurse came and took our blood pressure, checked we were feeling OK and took a heart trace.  After all this nothing happened.  There wasn't even a flutter in either of our heart rates - *fantastic*!!!!

The first week I spent feeling very dizzy.  It was almost like I had water in my head sloshing around and I felt nauseous but I could still eat.  Very bizarre.  Last week I began feeling a little more like me apart from being more exhausted than usual.

I can only take medication I have already been prescribed and nothing else new til after Christmas.  This is so the new drug gets into my system and we can really see how I'm tolerating it without any interference from anything else.  Unfortunately this is causing me a bit of a problem.  I am in absolute agony with my legs and can't take any new pain killers to help.  I've got an appointment tomorrow with the Pain Clinic to see if we can up the doses on any of the pills I have now.

Wish me luck!!!

Relapse...again :-(

Well I'm sitting here recovering from a relapse...again.  But this one is the worst I've had in about 10 years.

The best way to explain what has happened is to explain how MS works.  MS is an auto-immune disease meaning that the white cells which normally protect you from infection get all confused and start attacking my own body.  They 'nibble' at the myelin coating surrounding the nerve fibres in my brain and cause all of my symptoms.  The myelin is like the plastic coating on the outside of an electrical wire.  When its damaged the electricity can escape and cause all sorts of problems.  The same thing happens to my nerve impulses when the myelin is damaged.

Anything can set of a relaspe, particularly and infection or bug.  I had my flu injection (which I need due to my suppressed immune system) and I'm sure that what set this relapse off.  Because I'm no longer on Tysabri and have no MS disease modifying drugs in my system, my immune system is basically having a party and having a good old nibble.

I've been to hospital for 3 days to have a 3 bags of steroids put into me.  That meant having a canula in my hand for 3 days and not being able to sleep.  On top of the trips to the hospital and the relapse, I think I've had a bug too as I threw up for a week and couldn't keep anything down.  The doc eventually gave me pills for morning sickness and they did the trick.

I'm still very weak and exhausted and just can't be bothered with anything.  To make matters worse I've had a birthiday in amogst all of this and I've not been able to see Jo as she's had a cold and we didn't want to tempt fate.  So my pressies are still with her.  Hopefully I'll get to set her on Saturday and have another birthday!!

Anyway roll on next Monday as I start my new medication, Gilenya.  I'll be in hospital all day for monitoring but at least I'll be with a Justine who I met while we were having Tysabri.

Apologies for this being a long, wordy post but I thought you might like to know whats going on.

MS....hmmm (again)

I mentioned in my last post that MS had come to play doing my journal page, well I think its gonna be around a lot more for the next 4 months or so.

I saw my Neurologist in July and we've come to the decision to take me off the Tysabri that I've been on for close of 4 years.  I've been positive for the JC Virus for over a year now and we had previously decided for me to stay on Tysabri as the risk of developing PML were still quite low.  However new statistics have recently come out that show the risk as 1 in 200 which is just far too high.

However there is some good news.  My MRI scan showed no change again, which means my MRI has been the same since 2009!!  And my Neurologist is putting me on the new oral medication - Gilenya, but there is a downside.  I need to be 4 months free of Tysabri before I can start the Gilenya.  So for the next 4 months I will have no Disease Modifying Drug (medication for MS) but I will still have all of the pills I take to help combat the other symptoms.

My MS is aggressive and the only time I've been without an DMD's is the first 6 months after diagnosis and it was sheer hell.  All of the problems I have now with my legs were caused in that period, so I hope you can understand why I'm a tad scared at the moment.  I am determined to keep myself as healthy as possible, but I'm having to learn all over again what my body's limits are and try to stop before I hit them.  For those of you who know you know how hard that is for me ;)

MS Trust Art Show

I promised you I would show you my piece from the MS Trust Secret Art Show when it had sold.  I forgot to take a photo so Jo from the MS Trust very kindly sent me a scan of it.  And here it is

The butterfly is from a (now sadly) discontinued stamp plate by Elusive Images.  I stamped it onto the heavy watercolour paper that the MS Trust sends you when you show interest in creating a piece for the show.  I embossed it with a silver embossing powder andpainted it with Twinkling H2O's, then used a yellow Ecoline Ink to colour the background.

The sentiment was also on the stamp plate but I needed it to be bigger, so I printed onto to tissue paper through my printer.  I have a Kodak ESP printer and the ink dries very quickly on all the things I've tried through it so far.  As long as I tape the tissue to a piece of cartridge paper it prints fine.  As the ink dries very quickly you can use gel medium to adhere it to the background which is what I did here.

It sold on the first day of the sale.  How chuffed am I ?!?!?!

There are still some pieces left.  Please have a look.  Its a great cause very close to my heart (for obvious reasons!!)

MS Trust Spring Secret Art Show

Once again the MS Trust are holding a Secret Art Show in aid of the charity.  I have two pieces in this show - one that didn't sell from the last time and a new one.

Please, please click on THIS LINK and have a look at the fabulous artwork on offer.  You will only find out who created the work when you receive it.  Thats what makes it secret and fun!!

The sale opens for business at 9am on 11th May.  And, if you can, please buy a piece of artwork and raise funds for this wonderful charity!

A post to help my state of mind

 I went to see my Neurologist a couple of weeks ago and after examining my legs which, I thought were getting weaker, he told me that I am on the cusp of Secondary Progressive MS. This was a *huge* shock!!!

I feel like I'm in a washing machine being tossed around.  Its the same feeling as I had when I was first diagnosed.  Its the 'not knowing' whats gonna happen and having absolutely no control over it in anyway.  I like to be in control if I can and its taken me 10 years to relax (slightly) into the 'not knowing'.

I knew I was getting slightly worse but nothing has prepared me for this.  I have a great relationship with my Neurologist and we have been totally honest with each other and once I calmed down at home I realised that I'm pleased he told me.  At least my legs still have strength in them so I know they're not gonna collapse which has given me more confidence.

All of the problems I'm experiencing now, like the pain and stiffness in my legs, is a result of damage that happened when I was first diganosed.  The second time I went into hospital I literally couldn't walk and now my MS has decided to have another go at that part of my brain.  But at least now I have my wheelchair.  I'm so pleased I got it before all of this happened.  I can't imagine what it would be like to have the do that now on top of everything else I'm feeling!

I had a few bad days where my mind has been all over the place.  So after nights of not sleeping properly I decided to journal it out.  I found the picture in my bit box where I keep loads of pictures from magazines when I was looking for something for the Spring page.

I used water soluble crayons for the background and a white Sakura Souffle pen to draw lightening onto the background.  I needed to wite down how I felt but ended up just writing what you see here.  I *know* why the journal page was made and I know what I was feeling.  This has helped me enormously.

I used a stamp that Jo gave me for my birthday a while ago and it sums up my life beautifully.  I stamped it onto tissue paper and used Golden gel medium to attach it to the page. 

Its taken me a long time but I think I have my head round it now.  I am the same person who walked into the clinic as walked out.  Nothing has really changed apart from a name, but its a name that can literally strike fear into you.  I'm seeing a psycologist from the Pain Clinic tomorrow and my counsellor on 2nd April so I can let rip then ;)

Thank you for allowing me this little therapeutic indulgence.

Pain, Journaling and Art

I've been meaning to post for ages but things have just gotten away from me.

First of all good news - I HAVE NO PAIN!!!!!!!

I've been a lot of pain over the last year or so.  It gradually crept up on me and just didn't go away, no matter what pain killers I took.  The only way I could get relief was to craft but my Muse disappeared.  Think she was scared by the pain lol!!

I've been attending the Pain Clinic for a while and a couple of weeks ago the doc offered me a Lidocaine infusion.  Its a local anaesthetic but doesn't numb when given by infusion.  It just does something to trick the nerves into not giving me pain.  There was no guarantee of it working but I *had* to try.

I had it on 25th January at my local hospital.  I had to go in my wheelchair as I just couldn't walk for the pain.  I went in with a pain score of 10 and came out with a score of zero and could walk again!  I get a little pain at night but the rest of the time its fine and no more pain killers.  Its a really weird feeling.  The first night I couldn't sleep cos my legs just didn't feel like mine.

I've still got very tired legs and I'm having spasms again but my MS Nurse is gonna work it out with my Neurologist to change some medication.

So now that I've written loads I think I should show my completed journal page that I started on new Years Day.

I wrote the wording using a dipping pen and drawing ink.  There were spots of ink all over cos I'm not so good with the pen so I decided to try and cover up the black marks by using Black Soot DI, which of course looked too dark and didn't dry.  So baby wipe at the ready I wiped it off and what I was left with was a darkened version of the original page which I love!

I also promised ages ago to show you my art from the MS Trust Secret Art Show.  There's another one starting in April.  I'm in the middle of doing more pieces for them.

All of the artwork is on heavy water colour paper that the MS Trust send out to the artist.  This one is drawing ink allowed to run over the paper with variegated metal leaf applied in some the shapes that the ink made.

This sold on the night of the first day of the show to the lady who organised the show.  She e-mailed to tell me and hoped I'd not be upset.  Out of all the artwork she saw, it was mine that spoke to her.  I was *chuffed*!!!

This is very obvious to any crafters out there.  I used Crushed Olive and Broken China DI's on the background with some water dripped on to remove some of the colour.  The stamp is from Sir Tim of Holtz.  Its a clear stamp and I got permission from Ranger and Sir Tim before using it.  The wording is printed on the PC and cut up.

This one sold in the first 10 minutes of the show opening!!

This was the first piece I did and I not keen on it.  Cos I'd spent time doing it I sent it in anyway.  I'm not sure if it sold or not.

I used some red paint from Ikea meant for colouring the plain wooden items they sell.  I painted another piece of paper and clagged this piece onto it and it came apart with this lovely pattern.  I used a green paint dabber through small sequin waste and then used yellow paint on a skewer to make the lines.

I've already done one piece for the Spring show and I'm really pleased with it.  Let you see that when its (hopefully) sold.

Great News!! (and a dreaded question)

I was at the hospital on Tuesday for my yearly check up with my Neurologist.  I had to have an MRI in January to check that I wasn't suffering any nasty effects from being on Tysabri monthly infusions for 2 years.

The great news is that my MRI hasn't changed since the one I had in 2009 which means that the infusions have helped to stop the MS progressing!!!  How cool is that?!

But...

I'm still having the most awful pain in my legs.  My MS Nurse, Carmel, thought it might be down to the new pills I was taking so I need to slowly wean myself off them.  Unfortunately it means I'm having violently painful spasms again.  Once I'm off the pills altogether I have to start on the ones I was originally on.  Confused???  I think I know what I'm doing!!

When I talked to my Neurologist about the pain he asked the dreaded question 'Does it feel like a relapse?'.  To anyone with MS, this is a shudder inducing question.  A relapse is when your MS symptoms flare up and is treated with high dose steroids on 3 consecutive days.  And if its serious enough it can leave you with more disability than you had before.

The good news is that if this is a relapse, its a small one.  Just gotta wait and see how I feel once I've swapped the pills over.

Wish me luck!!

Art and Counselling (part 2) - MS Canvas

The second canvas I did for counselling was around my feeling towards my MS. I feel like its a monster that is always behind me waiting for me to relax and it'll 'bite'.


I bought a black 12 x 12 canvas and dry brushed various Ferro metallic paints on to it. My Mam had torn a piece of cardboard from a box in a wonderful shape. I painted that with more Ferro paint in blue.

I had many ideas for the canvas, but none were working, so I left it for a while as I wanted to get it just right. I tore some pages from some MS magazines that I subscribe to and eventually came up with the idea of a hungry sea monster biting at a girl dangling above it. I used a citrus Paint Dabber to colour the monster and a Tippex pen to colour the teeth and put the spots on.

Next I took a picture of a model out of a magazine and glued it to a piece of card for strength before cutting it out.  I coloured her in grey with a wax crayon (the only thing to hand and I couldn't be bothered to stand up!) and gave her red shoes.  If I could, I'd wear red HIGH heels.  The shoe falling off represents the way that each time MS bites (in the form of a relapse) it takes a little of you away.  At the moment its just my red high heels!

I wanted it to seem like a fifties cartoon strip so I gave the monster and heroine speech bubbles cut from MS magazines.  I also did a little 'commentary' to bring it all together, again from MS magazines.



The whole canvas depicts totally how I feel about the MS.  I dangled the heroine string which I hammered into the top of the canvas with a decorative staple.  I say hammered because the speciality stapler it came from wouldn't work like a normal stapler when you can use just the top to staple, so I hammered it in instead!

Here is the front of the canvas.

The back of the canvas is also 'decorated'.  I used pictures cut from MS magazines again to show some of the symptoms I suffer from.  The left one shows how I can never know what is round the corner for me.  The middle is depression.  The right is fatigue.  Even looking at that photo gives me the wobbles.  I know I'd never manage those stairs!

I then wrote 'MS' in orange (the colour of the MS Society) and crossed it out in green, the colour of the MS Resource Centre (MSRC) who I support and sell cards at Christmas in aid of.  They have been a great help to me since I was diagnosed.

So there you have it, my MS Canvas and it was very, very cathartic to do.

The big 'D'

As many of you know I have MS and with that can come depression (the big D).  I have been suffering from depression for a few years but it came back with a vengence last year.  Its been under control, but at the moment it seems to have reared its ugly head again.  I am seeing a wonderful counsellor who has really helped me put things into perspective.

One thing that has really helped is art journaling.  Lynn (from Graphicus in Barnard Castle) showed me all about it last year and told me how much it has helped other people with depression.  So I set about giving it a try.

This is one of the first pages I did.  I started off writing everything down about how I was feeling.  I then gessoed over that.  It took a few coats of gesso to obliterate the words.  I didn't want them to be completely obliterated as I still wanted to see some peeking through.  I then used black chalk to scribble over the top randomly and used a tissue to rub it in a little.  The 'what lies beneath' wording and maze were both from magazines.  Most of the stamps are Tim Holtz, stamped in versamark then embossed in black.  I wrote words over the top to express how I was feeling.

I found doing this page VERY cathartic and although the big D is back, its nowhere near as bad and this page shows me how far I've come.  I feel that because I wrote out my feelings and covered all the bad stuff up, I can move on without that weighing me down.

Art journaling can be done in any kind of book or just on paper.  Its only for you to see so it doesn't matter what it looks like.  I've only posted this on here in case someone who may need a little help uses the idea.

Treatment Day!!!

Been for treatment today and met up with the lovely Justine and equally lovely Angela (gotta say that cos they follow this blog LOL!!!). I always look forward to treatment days as I generally feel better after them.

The Royal Victory Infirmary (RVI) in Newcastle where we have treatment once a month for MS is being modernised and all the wards are being moved around. So we had a nice little jaunt to a different part of the hospital and we have to ring up before we leave home next time to see where we'll be treated.

The treatment takes about a couple of hours but can be less if they can get the cannula in first try, which is a miracle for me if they can. Then we're hooked up to pumps which run an infusion of an MS drug direct into our veins. Once that bag has finished they hang another bag, this time of saline, and that clears all of the MS drug left in the tube connected to the pump, into us. Then we're released into an unsuspecting world. I always walk a little better after my infusion and gives me a lot more energy, but it generally only last for 3 weeks and the week before my next infusion I call my 'down' week.

Although it gives me more energy I still don't feel as 'normal' as I should. I still have problems with walking (I walk with a stick sometimes crutches), still have fatigue which hits like a ton of bricks and can fell you for days, still can't feel parts of my body, just the usual MSy things!

Having said all of that its not so bad. You just have to think as positively as you can and take each day as it comes. I always say I have MS. MS doesn't have me!!