IT'S CHRISTMAS! 🎄🎉🎁🎉🎄

IT'S CHRISTMAS! 🎄

Martin and I absolutely love Christmas! We always have and I suspect we always will! 🎄

It's the beginning of Christmas week and we are well into enjoying the festive season but having a chronic illness means that planning is essential! 

We put our tree up early. I knew I was struggling to stand and that decorating it would take a lot of energy so it was actually undecorated for a couple of days.

I needed a lot of Martin's help with it all, I was basically directing him where to put things! But between us we got it done and I was pleased that we'd taken the stress out of it. 

We finished off putting up the rest of the decorations, including the outside lights around our front door and I was so pleased that it was all done, even if it was a week or so before we have done it in the past! 

We had a lovely trip out last week, we went with my Dad to Paignton zoo as they had an event called Glow Wild. It was a trail, around one part of the zoo, that was a light show. There were various light displays and it was really well done. 

We had been to one at Killerton, a couple of years ago, but it wasn't quite so well thought out. It was up and down some fairly steep inclines, which wasn't helpful when pushing a manual wheelchair so the zoo had definitely improved on that. 

I was able to hire a scooter at the zoo, which gave me more independence and meant Martin could concentrate on taking photos rather than pushing me! 

Our next Christmas outing was to go up to the RSC at Stratford. 

One of Martin's favourite things to watch at Christmas is a six part children's drama called The Box of Delights. He has got the box set on DVD and a cd of the soundtrack, so when he found out that the RSC - Royal Shakespeare Company - were doing a stage production this year, we looked straight into booking tickets. I was able to book a wheelchair space and a companion seat and we went up to the matinee performance on Sunday with a good friend, it was a lovely Christmassy day out! 🎄

We have to congratulate the RSC on a wonderful production, it was incredibly well done and included music, singing and puppetry, as well as being very well acted. It was a magical show that seemed to be enjoyed by the whole audience and it was well worth travelling to Stratford to see it!

So we're a week away from Christmas day and I'm trying to be organised! 😂 

I have a couple of medical appointments this week, I still have gift wrapping to do, although I have to admit that I don't really wrap anything anymore. We have lots of gift bags and I just use those, which is a lot easier on my hands for both wrapping gifts and also when I'm unwrapping them! 🎁 

We were able to book ourselves a shopping delivery slot for the morning of Christmas Eve, which has taken the stress out of our food shop. It really is a case of thinking ahead, something that I used to be quite good at! 

Anyway, Martin, Rosie and I would like to wish you all the very best wishes of the season, wherever you are, whoever you are with, may you feel safe, warm and loved.

With very best wishes

A,M&R

XxXxX

🥰🎶🐾 💕🎄💕🐾🎶🥰

Infusion time!

After what feels like an incredibly long time, I have finally had my lidocaine infusion. It's been a difficult few weeks but Martin, as always, has been an absolute star 🌟

So let me take you through my infusion day. 

I get up at 6am as my appointment at the hospital is 8am and bare in mind that the hospital is about thirty minutes away. 

Once I get there and have booked in, I have to get my portacath accessed. 

Let me explain! 

My veins are not very cooperative and are difficult to find but not just that, when I need to be cannulated I find it incredibly painful having a needle put into my skin because of all the altered sensations I have. 

I am not afraid of needles, when you've had as many experiences with them as I have, you learn to deal with them. It's the pain I experience that has always made things a lot harder. 

My pain consultant, who recommended the lidocaine infusions, suggested that I have a portacath, also known as a TIVAD (Totally Implantable Venous Access Device), put in my chest. I can feel the port, in fact this one is only just under my skin so it's easy to feel. It doesn't hurt, actually when I'm not having it accessed I forget it is there, but by being so easy to find makes it easier for the person putting the needle in!

I had previously had one several years ago, when I was having a Disease Modifying Drug called Tysabri, but it had been taken out when I stopped that treatment. 

My consultant put one back in my chest which means I have permanent access to my veins - as long as I have a nurse or doctor who knows how to access it, which hasn't always been the case.

The port definitely makes my life easier but it also helps the nurses who are trying to treat me because it's not as painful, or as hit & miss, as being cannulated. 

The port in my chest is connected to the vein in my neck so that the medication can travel through my body. 

So a needle is put into the port and firstly, they try to draw back blood to check they are in the correct place......unfortunately, I have had plenty of times when it hasn't drawn back and yesterday was one of those times 😔 It doesn't stop me having my infusion though.

Once accessed, the port is always flushed with saline solution and the treatment is then connected to the port. 

The infusion itself takes about ninety minutes to go through, but that always goes really quickly. There are generally one or two other people having lidocaine that I can talk to or I can write posts for my blog on my phone! 👍 

You are hooked up to a machine that monitors your blood pressure and heart rate every twenty to thirty minutes. When the infusion has finished the port is flushed again, just to keep it all safe. The needle is taken out and it can bleed a little bit so I always get a dressing or plaster put over it. 

I'm then free to go!

The infusion itself can make me feel quite tired and generally a bit yuck, so I always give myself a couple of days just to lay low. After a few days I can usually start to feel the lidocaine kicking in and after about a week the pain is a little more manageable. The pain and altered sensations are always there but everything is easier to deal with. Personally I find that the benefits last for around six weeks, after which the pain starts increasing again and by eight weeks I am definitely ready for the infusion again. Unfortunately, at the moment, I am having the infusion every twelve weeks, which can be challenging but, luckily, I've got a good support system around me! 

It is such a useful treatment, in my opinion. It helps me to live my life in a more comfortable and positive way and long may it continue! 😄

XxXxX 💕

PS Some Rosie love for you all! 😻

Pain, pain go away.......

Pain, pain go away........and don't come back another day 😢 

I don't like writing a grumpy post but I needed to vent and just get it off my chest.

I'm really struggling with my pain at the moment as I am waiting for my lidocaine infusion. It is driving me crazy because I know it will help. I am having it on Monday, which I know is only a day and a half away but it feels like forever! My legs and feet are buzzing and tingling all over and my back is really burning. 

I am trying to find anything to distract myself but at the moment my body is taking over 😞

We have recently put up our Christmas decorations, which normally I love doing but I needed Martin's help to do most of it and that is very annoying, not because he doesn't want to do it but because it's another affirmation that I am becoming more disabled. 

BUT it's nearly Christmas and I'm about a week away from feeling the benefits of pain relief so I'm trying to stay positive and looking on the bright side of things! 

Plus, who can feel down when you've got this face looking at you?! 😻

Yes, she's sat in the wash basin! 😹

XxXxX 💕

NEUROPATHIC PAIN, ALTERED SENSATIONS AND THE WEATHER!

Neuropathic pain and altered sensations were the first symptoms of MS that I experienced back in June/July 2002. I wasn't really one for going to the GP about anything and my initial reaction was that I just thought I had slept in a strange position but it continued for days.

It turned out they were the start of my MS journey and I can honestly say that those altered sensations and the neuropathic pain have been with me every day since. I haven't had a single day without feeling strange sensations/pain in my feet, legs, lower back, arms and hands. But you learn to find a way to live with them. You have to. Don't get me wrong, I have my days where the pain gets really bad or the sensations feel so strange that they affect what you can do, but you learn to take each day as it comes. 

I have Relapsing Remitting MS (RRMS) and for some people this means that they will have a relapse and when it is over they go back to "normal" and are able to function without any, or very few, issues. Unfortunately, in my case, my pain and altered sensations have never left me. There will be days and times that are worse than others but it is always there.

 

Over the years I have tried many different medications, some that are better than others but I've always given things a try, because what have I got to lose? 

One of the things that was suggested to me by my pain consultant was a Lidocaine infusion. Now lidocaine is a local anaesthetic and so therefore can be used as a nerve block - do I sound like I know what I'm talking about.....it's all an act really! 

I am currently waiting for my lidocaine infusion, which helps me with the painful sensations I feel all over my skin. I have been having these infusions for a few years and I find them very helpful. It's not a miracle cure and it doesn't get rid of the pain but it just helps make things a little more manageable.

The problem that I'm experiencing at the moment is that the hospital has changed the routine. They were giving the infusions around every eight weeks. I would find that after about six weeks, the pain would start to increase and by the time the eight weeks was up, I would be more than ready for the infusion.

Now though they have moved us all to every twelve weeks, which means between weeks eight and twelve, my pain can get much worse. I believe the reason it has been changed is because there is not enough space or nurses to cope with the demand. This is incredibly frustrating because when you're given something that gives you even just a little relief, it is so important to keep it going. 

So my problem at the moment is that it has been ten and a half weeks since my last infusion and I am struggling. I have had my appointment for my lidocaine infusion, 11th December, and it will be exactly twelve weeks since my last one. My GP has written to my pain consultant to see if I can go back to eight weeks and I am currently waiting for an appointment to see him. 

Things haven't been helped by the weather turning so cold, my body cannot tolerate either being very hot or very cold, it's incredibly frustrating! In the summer, when there's beautiful weather, my body goes haywire and I need to keep myself cool, unfortunately there are only so many clothes you can take off! But in the colder months, especially when we get the bitter temperatures, my body can't handle that either. My pain increases and I get incredibly uncomfortable.

So of course now the weather has changed, the temperature has dropped significantly, so my pain has gone up another notch. I am desperately counting down the days until I have my lidocaine infusion.

 

On top of that my left leg is doing a dance of its own while it spasms every few seconds. I take a medication called Baclofen which has always helped with my spasms and in general I'm not really affected by them but, at the moment, I am finding that the spasms are happening in the afternoon, especially as it gets colder, and that is really annoying. My leg will suddenly try to kick out, involuntarily, and I have no control over it. I am taking extra Baclofen when this happens as it is the only thing that calms it down. 

When this leg spasm happens, I am finding it more exhausting too, because it is quite physical, even though I am just sat down. It's quite disconcerting!  

I have got a week before I have my lidocaine infusion and it's going to be a long week! I have plenty of distractions though, a certain fluffy girl keeps us very entertained! 😹 

Please keep warm out there. 

Sending love and Rosie cuddles 

XxXxX 💕