More Holiday 2012 Photos!

So as promised I will be posting some more photos from our 2012 holiday. 
I think the next lot will be from our time on the Caledonian canal. It includes Loch Ness and we go from Inverness to Fort William with access to Ben Nevis when we got to Fort William.
The scenery on the Caledonian canal is absolutely stunningly breathtaking..............well see for yourselves!! :-)

 Urqhart Castle

Loch Ness

Urqhart Castle

Our Boat 'Highland Glen'

Ben Nevis

The three peaks including Ben Nevis & Annoch Mor

My Dad and I on a gondola going up Annoch Mor!

The view from the top of Annoch Mor

The gondolas!

2012 Holiday photos

I have talked a couple of times on here about a holiday that my Dad, Martin and I were going on last year.
It was going to be six weeks and we were going all over the UK.
We actually only managed four weeks as we returned home because Martin was very poorly and we needed to get him sorted out.

We went from South Devon up to Birmingham. From there we travelled up the East side of the UK. 
We went into Scotland via Edinburgh and then made our way up to Inverness. 
We had hired a boat from a company called Caley Cruisers to go on the Caledonian Canal for eleven nights. 

http://www.caleycruisers.com
Incorporating Loch Ness, Loch Lochey and Ben Nevis!
The canal trip was amazing, the scenery was absolutely stunning, breathtaking. We have some beautiful photos from there!.

After we had returned the boat, we went to Fort William for a few nights, on to Killin and then to Dumfries, taking in the Falkirk wheel on our travels!

We then left Scotland and went down to the Lake District. We had booked a week near Cockermouth but we only stayed for three days and then we took Martin back home.

It was a wonderful experience and we did have a lovely time...........even with Martin's issues! 
At least he is on the mend now and we are going to finish off the trip later on this year, which will be very special!

Anyway the following are just a few of the photos we took............there may be a few posts with photos over the coming days, as I look them out!

So Enjoy! XxXxX

Tysabri number.......too many to count!

TYSABRI INFUSIONS 

And so last Thursday it was Tysabri infusion time again! I can't believe just how long I've been having these infusions.
30th June 2009 was the date that I started the treatment and the beginning of September 2009 was when they put my portacath in. That means I've had my portacath in my chest for over three years.......wow, how time flies and it's amazing how you get used to something.
I remember when it was put in and each day I thought about what to wear so that no one could see it, now though, I don't even think about it being there!!

I'm not convinced about how much good the Tysabri is doing me but my consultant is happy with me being on it and as I completely trust him I'm happy to continue with it. Plus there's no real alternative so there's no point in coming off it!
I think one of my issues with it is that I don't feel any different while I'm on it. What I mean by that is that I know people who can feel when they're ready for their next infusion. They know when they are coming to the end of their four weeks and are due the treatment. I don't feel that at all. In fact last year, when we had our six week holiday, I had a gap of seven weeks in between my infusions but it wasn't an issue. I didn't struggle while I was waiting that extra time.
My frustration is, because I don't feel any benefit, it's hard then to convince yourself that it is actually doing you some good! 
But as I say, until something better comes along I guess I'll be having a needle in the chest every four weeks for the foreseeable future!! :-)  

THE WEATHER

I wish this weather would decide what it wants to do and get on and do it! One minute it's mild and warm and the next it's freezing cold and bitter.
The cold has a horrible impact on my MS too.
My feet get very very cold, but my problem is that it then becomes difficult to differentiate between cold and pain. My toes especially. Because I have very little proper feeling in my feet, most of the time I can't tell what's going on. The carers that I have coming in are always telling me that they are freezing cold.
They put cream on my feet (Hydromol and Double Base) because when they first started coming to me my feet were in a dreadful mess. Very dry skin on the bottom of my feet, not helped by me walking around with nothing on my feet! The number of times that I stepped on something without realising it! ;-)
But I was referred to our local podiatry service and between the carers putting cream on and the podiatrists cutting my nails, my feet are in the best condition they've ever been in..........it's a shame I can't feel it isn't it?!?!

I thought that we may have made it through winter and that spring was just around the corner but apparently we may be in for snow again next week! 
And by we I mean the country but not us here.........we very rarely have any of the beautiful white stuff much to Martin's annoyance!! ;-)

Anyway whatever weather you are hit with next week, I hope it finds you well and able to cope with it!


Until next time! :-)
XxXxX

I'm back!

Hello everyone!
I can't believe that it's nearly a year since I wrote my last post.....where has the time gone?
Well I can tell you that we've had a nightmare 12 months but hopefully we are out the other side now.

So where do I start??

MY HOSPITAL ADMISSION!
The last time I wrote on here I was going into hospital to come off the opiates that I was on. 
I ended up being in hospital for three and a half weeks and it was one of the hardest things I have ever had to do. But I have to say that the Sisters, nurses and HCA's at the hospital were all amazing. I'm fairly sure that if it hadn't been for their patience and encouragement I would have given in very quickly! 
I didn't give in though and I came off all the opiates that I'd been prescribed. 
The trouble was that it didn't work, I was still in huge amounts of pain, if anything more so, which was really disappointing. 
But it answered the question that we wanted the answer to.........the opiates weren't causing my pain. 
And by coming off them, even though I was going to go back on to something, it meant I could go on at a lower dose and we could effectively start again. 
My pain consultant suggested that I try something different this time, so I went onto phentynol patches. I didn't really get on with these though. I didn't feel any real pain relief and the patches didn't really agree with my skin either!
I was slightly concerned that I was running out of options but my consultant told me about a new drug that hadn't been about long but the few patients that he'd put on it had really benefited from it and he felt it was worth a try for me.
It's called Tapentadol. It's another opiate, but I am on a significantly lower dose than I was on with the oxycontin etc. 
I have been on it now for around nine months and I am fairly happy with it! I'm not pain free and I do still have some horrible sensations that I've no idea the trigger for, but if I was asked to choose between this and Oxycontin then I would choose Tapentadol! 

MARTIN'S ILLNESS!
So I came out of hospital mid April which gave me just under a month before we were going away with my dad for six weeks around the UK as a kind of joint 40th birthday present from my dad...........Our big holiday! 
The trouble was that I'd been so inactive in hospital that my legs had really seized up. I had to have intensive physio for a few weeks and I was told to take it really easy and give myself time to recover. 
There was a problem with that though.
Martin was not feeling well himself. He wasn't eating well, he was incredibly pale, very lethargic and fatigued. 
So I found myself trying to look after both of us........not ideal!! 
Before we knew it we were celebrating (and I use that term very loosely) Martin's 40th birthday (a Christmas party in May.........genius!) and then we were off on our six week trip around the UK - I'll be doing a separate post about that later! ;-)
Unfortunately Martin was really struggling. He was getting less and less of an appetite, he was so fatigued and to be honest it was incredibly worrying.
We got to the Lake District on a Saturday and by the Tuesday, we returned home, two weeks earlier than planned :-(

It's quite a complicated story but basically we were told that the doctors were going down the Lymphoma route. He'd had a CT scan, various blood tests - he'd had to have at least two blood transfusion sessions because his blood count was worryingly low. They then did a bone marrow aspiration, which didn't give them any results so they decided then to do a biopsy of the lymph nodes in his abdomen. 
This was all done over the course of about 4 weeks but all the time Martin was getting weaker.
He had the biopsies done as keyhole surgery and it was from those biopsies that they eventually got a positive diagnosis. 
He was diagnosed with a malabsorbtion infection called Whipples disease. It is incredibly rare and the biopsies were sent up to the research department of Great Ormond Street so that they could confirm it. They said that his was only the 10th case they'd seen in 10 years!! 

Trust Martin eh?! 
Fortunately there was treatment for it. He was admitted to hospital for two and a half weeks where he was fed by tube and given IV antibiotics, as well as all sorts of vitamins and minerals. And when he was discharged he was put onto oral antibiotics for at least the following 12 months.

I'm pleased to say that he is doing brilliantly now. He's put on over four and a half stone and is looking amazingly healthy. He still has his off days but to see him eating so well and having enthusiasm for life is fantastic!

When I think back to this time last year........well I really don't want to! ;-)

FRIENDS
One thing I just want to say about our experience of Martin's poor health throughout 2012 was the amazing support we had from our family and friends. It's at times like that you really find out who your true friends are and whether it was driving me to the hospital or visiting Martin when I couldn't go or driving me to Plymouth so that I could have my treatment and many more gestures such as these, it all made the difference to us both and for that we will forever be incredibly thankful.

MY CARERS! 
Of course this was such a stressful time and I wasn't looking after myself particularly well. I have to say that our GP was fantastic. She was fighting Martin's corner with everything she had but she was also concerned about the affect it was all having on me.
Against my better judgment, I had to agree to getting outside carers set up to come in and help me. 
I was SO frustrated.
I felt as though I could manage everything but it wasn't until they were coming in and helping me that I realised just how much of a struggle it had all been and how much I wasn't looking after myself properly at all, Martin was my priority!

It has been such a difficult thing to get my head around. In my head I should be able to do everything and asking other people to do things for me has been such a challenge for me.
Luckily the company that I've got coming in has been great, I've got a lovely group of carers who come in and I see them now as friends really! 
I still find it impossibly difficult asking them to do things for me but most of them know what help I need now and they just get on with it!! ;-) 

So to be honest we were quite glad to see the back of 2012! 
It was supposed to have been a great year for us and yes we did have some definite highlights.........like going to the Olympics! But they were few and far between around the low lights!

2013........so far so good!

Martin is well on the road to recovery and dipping his toe into a theatre project again, I've got my teeth into swimming (something else I'll write about in a separate post!) and we have booked a holiday in October.......to complete what we didn't do last year and with a canal boat trip thrown in for good measure!
I hope everyone is keeping well.....or as well as they can! I look forward to adding more posts over the coming months.........it feels good to be back!! ;-)

Much love :-D
XxXxX

Hospital Here I Come! :-(

So I have finally heard from my local community hospital & as long as everything is OK & they have a bed available I'll be going in on Monday 19th March for the completion of my opiate withdrawal.
I have very mixed feelings about this.

I'm glad that they are getting me in, after all I've been waiting since the end of January! But to say I'm scared is an understatement!

Only the other morning I realised that I'd forgotten to take my tablets the night before. I knew as soon as I'd woken up because I felt really ill. I was shaking from the inside out & I had so much pain all over my body.

Now if I feel like that after forgetting them for one night, what am I going to feel like when I can't ease that by taking a tablet?

Don't get me wrong, this is what I want!

There have been several stages where I could have given in & said that I just want to go back on these but I didn't want that.

I want these drugs out of my system!

I was incredibly naive. When I started taking these meds I had no idea what they were. I had been told by my pain consultant to take them & so I did. We started off at a low dose, as you do, but as usual my pain wasn't responding so we kept increasing the dose.
What I was naive about was that I didn't know what it was that I was taking. I had no idea that this was an opiate or that it was twice as strong as morphine!
I had just blindly gone along with what I was told to do.
I am in no way blaming my pain consultant. It was up to me to check or, at the very least, to ask questions..........but I didn't! :-(
I think I had got to the stage where I would try anything. I have not been that successful with medication's working so I just went ahead with my eyes shut!

Maybe I didn't want to know?!?!?

Then, when I'm on a high dose & have been for about 18 months, my pain consultant tells me that there is new evidence to suggest that opiates can cause pain as well as help it.

Apparently when you are on a high dose for a lengthy time, basically you become immune & the pain becomes worse.
So because I'd had a period of unexplained increased pain, it was suggested that I come off the Oxycontin.
I had come off drugs before with no trouble so yes of course I'd do it!
He told me that it wouldn't be that easy and that the likelihood would be that I'd have to go back on it, but it was worth a try.
We decided to wait until after Christmas - nothing spoils our festive season!

I started coming off them quite quickly because I didn't really know what I was doing! I had problems after only a few days.

My legs were having spasms, I was shaking from the inside out and had headaches and was feeling sick. I spoke to an out of hours doctor who advised me to increase my dose of Oxycontin and he gave me some diazepam too.

I saw my GP and we came up with a plan for me to follow with taking the Oxycodone every 4 to 6 hours so that my body could tolerate it. I had originally been on Oxycontin which is a modified release tablet and lasts 12 hours. So going to Oxycodone meant I needed to take it every 4 to 6 hours.

I followed all this properly. At the start I had been on 80mgs of Oxycontin. So I was reducing down from that. I got down to around 20mgs Oxycodone and I was really struggling. This was really hard and I was feeling really awful.

I spoke to my psychologist because I didn't know what to do. He advised me to ask for help. Call my pain consultant and see what he suggests. So I did.

I got an emergency appointment and I told him that I was struggling to complete this on my own. I wanted to see it through but I felt that I probably needed to go into hospital to do that. He agreed that I should see it through. We wanted to get this drug out of my system so that we could start again.

This appointment was at the end of January. He said that he couldn't get me in hospital straight away but that he would get me in asap.

There have been problems because the hospital has had a virus and so there haven't been many admissions. I saw my pain consultant again mid February and he was now thinking that if he couldn't get me into the main hospital he would have a look at getting me into one of the community hospitals.

And so that is where we are now.

I have to call my local community hospital on Monday morning and check that there is a bed available. If that is all OK then I will be going in on Monday to complete the opiate withdrawal.

I am terrified! I know I need to do this and I am glad that I am finally going in to complete this process but I also know it's going to be hard and it's not going to be pleasant.

So I guess I'll see you on the other side! :-)

Love & hugs XxXxX

It's March already!! :-)

Well, I can't really believe that it's March already!
The days are getting lighter for longer & Spring appears to be on it's way!
So do the seasons affect you?
I think psychologically they do. But for me the climate changes do too.
My problem is that both ends of the spectrum affect my pain issues! Extreme cold but also extreme heat! And when I say extreme, actually it doesn't really have to be that extreme!
For me, because pain is one of my main symptoms, that's the one I notice it on most but I was wondering about my other symptoms too. And I guess the seasons do make a difference but not enough that I really notice it.
The fatigue is there all year round, although I have to say that the medication my consultant prescribed for me last September really is making a difference with that symptom.
He prescribed Modafinil 200mg for me. I generally only take one a day. And I have to admit it does keep me awake longer.
When he gave it to me he did say that they don't work for everyone. Knowing my track record with medications not working for me, I wasn't sure whether it would work or not, but in this case I can happily say that I have found something that works!
And it feels good to have something that helps!!
I try not to take it any later than 2pm though because otherwise I'm awake all night!!
I'm really glad that I have found this help because it will really help when we go on holiday! Which is now only 9 weeks away!!

The start to my year has been mixed!
I've had the issues with my opiate withdrawal, which I'm still going through.

I'm still waiting to go into hospital to complete the withdrawal & sort out this medication.
It's been so frustrating. If I'd known when I started this what I know now, would I have agreed to do this? I'm not sure?
I'd like to think I would have because although it's taken a lot longer than it should have, the reason behind doing it remains the same. To get me off this opiate & to assess whether it's been helping me or not. And if I have to go back on it, to be on it at a lower and more manageable dose will have made all this pain & frustration worth it!
Please remind me I said that when I'm going through the final withdrawal!

So that's been the difficult bit but the positives of the start of the year have been my ability to focus on other things.
I'm really proud of myself because I knew we had four months before Martin's 40thparty & then going on holiday and I really wanted to try to lose weight for those events.
It would have been really easy for me to use the pain I've been going through as an excuse for me not to eat healthily.........& believe me, I don't need much of an excuse to turn to chocolate!!
But I have a load of clothes that I want to be able to wear on holiday & I had a time limit, so my determination kicked in!!
Having the party & the holiday to focus on have been a god send! I really believe that if I hadn't had those things to look forward to, that I would have been on a slippery slope to burying my head in the sand with my moods & possible depression.
It has really proved to me how important it is for us to have things to focus on & look forward to. It doesn't work for everyone but it works for us!
So far I have lost just under 20 pounds! :-) We've got nine weeks to go so hopefully I'll get a bit further yet!
But I have discovered one thorn in my side! Tysabri!
It appears that after the last two infusions I haven't lost anything. And both times it's been directly after my infusion! So I'm altering my goals slightly so that I'm not too disappointed when I don't get as far as I want to with my weight loss!

The other thing that I have been doing is swimming.

I have always enjoyed swimming and it is something that I used to be fairly good at. So being diagnosed with MS put a stop to it for a while. I lost my confidence and even though a Physiotherapist took me once, I still didn't carry on with it, because I didn't trust myself and the sensation of the water on my skin was really difficult to deal with.

We are really lucky now though as we have a friend who has a pool that we are able to use. We are in a position to go when no-one else is there and that has given me the chance to find out what I can and can't do.

I can't use my legs properly at all and that is frustrating but I can still use my arms, so I have been able to build on my confidence and do some exercise.

I'm hoping that I'll be able to get a physiotherapist to come with me soon to help me with some exercises and show me how to strengthen my legs.

It's a really positive thing though, to be doing something that I enjoy but will also hopefully be helping to keep me mobile.

It feels really good & I hope to keep doing this for some time!

I hope everyone is keeping positive and looking forward to a brighter Spring and Summer!

Love & hugs

XxXxX

Opiate Withdrawal.........It's Hell!

Morning everyone!
Well it is 4am right now............and another night goes by with me not being able to sleep!
I'm getting SO frustrated :-(

So I saw my pain consultant on Monday. I had no need to worry, all the things I'd convinced myself, in my head, that he was going to say didn't happen at all!
He is still just as keen as I am to see this through & get me off the Oxycodone.
He feels that it is really important to get it out of my system so that we can start again. He says that the evidence is quite compelling that people who are on high dose opiates, over a sustained period of time, can become susceptible to the possibility of the drugs causing pain & they now know why or how that happens.
He also completely understands that I want to be in hospital to see it through. The problem is that there is a virus at the hospital & they aren't doing many admissions.
So I am stuck playing a waiting game & in the meantime I have to just put up with all the symptoms I have, whether they are normal MS symptoms or whether it is withdrawal issues.

He has advised me to go back up to 40mgs........let me back track a bit and explain!
I was on Oxycontin (Targinact) for around 18 months & I was on 80mgs a day. 40mgs in the morning and 40mgs at night. Oxycontin is Oxycodone it's just a slow release tablet over 12 hours rather than a short acting tablet (as far as I'm aware!)
I started the withdrawal....blissfully unaware of what I was doing or what I was letting myself in for. I'd come off tablets before and never had any problems!
I got down to around 20mgs a day when I started to experience nasty withdrawal symptoms.
Spasms in my legs, which I couldn't control. I felt sick, I had headaches, I was shaking but from deep inside, I couldn't sleep, my body was buzzing all over & my pain levels went through the roof.
So I was advised to increase it slightly again until I could be admitted to hospital to complete the opiate withdrawal.
I increased it to 30mgs expecting to be admitted fairly rapidly but that hasn't happened so my consultant has advised me to increase to 40mgs a day & see if that helps at all with the pain. He said that it's a significant increase so I should notice a difference....if it's going to happen.
If I don't feel any relief then I'm to drop back down to 20mgs & wait for the admission.
All I can do is try the increase and wait to go into hospital. I only started yesterday so fingers crossed!

It is so frustrating!
We are trying to be as positive as we can to get us through this situation. Because believe me, Martin & I are well & truly, in this together......thankfully!! ;-)
As much as possible we have been looking at ways to distract ourselves from what's going on.
Fortunately we have a few, very exciting things coming up this year!

I have someones 40th birthday party to organise!! And we have a big holiday to look forward to, so we are trying to focus on those things as much as we can!
It's not always easy to do though & sometimes you just want to have a hug and admit that it's a crap situation!

It's one thing that Martin & I have learnt over the past ten years of being diagnosed with MS. It's really important to have things to look forward to. They don't have to be big things, like ours are this year, just a day out or a weekend away. Things in the calendar that we can focus on when things get a bit rough!
What I desperately would like is to sleep through a lot of it, but wow, has my sleep been affected by this withdrawal. I can literally spend the whole night awake.
I try to sleep but it just doesn't happen. I've tried relaxation, deep breathing, all sorts, but nothing gets me to drift off.
Unfortunately tonight is one of those nights.
And the pain I'm experiencing is horrific. My feet are agony. I've tried to explain it before but it feels like someone has slashed them with a razor, my lower back feels like someone is stabbing it with thousands of pins and my hands, well, they are burning and the palms of my hands feels like someone has put loads of little cuts all over them.........it really isn't very pleasant! :-(
The other thing that is really annoying is that I have taken my Oxycodone, I have also taken two lots Oramorph (Morphine) as well as Ibuprofen but I'm still wide awake!
This is another reason why I am so determined to continue with & to complete this withdrawal. My body has become so tolerant of these really hefty drugs that nothing is knocking me out when they should be.
Is that too much to ask?!

Anyway having had my rant and having killed an hour I'll now go back to my party planning.
You see there is a positive to all this!!! ;-)
XxXxX