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 💕

How important pets can be!

People can be quite divided on the benefits of having a pet. But in my opinion having a pet gives you something else to focus on and the love, and entertainment in Rosie's case, is priceless! 

When we bought our house, back in 2001, one of the first things we wanted to do was get a cat. I had grown up surrounded by dogs, as my parents bred Newfoundlands and my Mum, with the dogs, were registered as PAT (Pets As Therapy) dogs. So when Martin said he wanted a cat, I was a little nervous as I had no experience with cats, at all, but that was when we got our first one, Pudney. 

 

We adopted her from a local rescue centre but sadly she passed away, unexpectedly, after we'd only had her for three and a half years. 

Soon after we bought home Barnaby, he was approximately 6 years old, again from a rescue centre.

 

After we'd had him for a while, I had the bright idea of getting a second one so we bought home a 6 month old called Kit Kat!

All I could see was both of them cuddled in with each other.........unfortunately that never ever happened!

We moved to our wheelchair accessible flat in 2015 and were able to bring both cats with us. 

We lost Barnaby in 2016 and Kit Kat in 2021 and decided we needed a break. Kit Kat had really bonded with Martin......actually they all do but we think that is because he feeds them, and even though we were both heartbroken when we lost her, it was sudden and she was only 14, Martin struggled with her loss so we didn't contemplate getting another one. 

 

I am on Facebook and on this particular day it was international pet day and there were photos of pets and people celebrating the day. I decided to put a post up wishing everyone a happy day, saying that we would get another cat one day! I was then contacted by a relative of Martin's, in Bournemouth, who explained she had a friend who runs a rescue centre in Poole and there was a cat that they wanted to get out of the area. She then sent a photo of the cat and she was a Persian! 

Now a little back story! A few years ago Martin had seen a Persian cat and fallen in love with the breed, this was before grumpy cat! We had accepted that we would never get one though as we only ever adopt ours from rescue centres and a Persian cat would never end up in a rescue centre, would they?! 

Apparently Rosie had been owned by an older couple, who didn't know how to deal with her, and subsequently she ended up at a wonderful rescue centre in Poole. 

After a serious discussion we decided that it was too good an opportunity and we have a lot of love to give a pet who just needs a bit of attention........Little did we know then what we were taking on or just how much attention she'd want/need! 😹

Having only ever rescued moggies, we approached this with the same attitude, the cat would guide us with what they wanted........she certainly does that! We knew that Persian cats were known to sleep a lot but we didn't know how fussy she'd be with her food or that she would come with SO much fur! We've only had domestic short haired cats before, never a long haired one and yes, she looks beautiful but that coat takes a lot of maintenance! So does the floor, Martin has never done so much hoovering! 😹

It is something that, although we joke about her maintenance, we genuinely had no idea what would be involved. I groom her every morning but that wasn't enough to stop her getting huge knots and matted fur all over when her new coat grew. We ended up needing to get a professional groomer to deal with it all as she was in quite a mess 😿 

She had previously been allergic to the spot on flea treatment that we'd got from our vet. She had horrible patches over her and her coat didn't look good so her flea treatment was changed to a tablet, don't get me started about the production it takes to give her that......she is so intelligent, on one occasion she kept the tablet in her mouth until we put her on the floor and then spat it out! 

We are lucky because we are at home all day so we are able to give her the attention she needs but we really had no idea what it would involve. She definitely tells us when she wants attention and if she's not getting what she wants she will sit on the table and stare at us until one or other of us gives in! 😹 

So our advice is to do your research! 

Another thing that has really surprised us is just how entertaining she is and she really can be an absolute nutter. She uses the area going from the hallway into our lounge, through the kitchen, as a speedway track and it is hilarious to watch! 😹 

Even now, two and a half years down the road, she still entertains us on a daily basis and I know this helps me be able to concentrate on something other than my pain. She also finds new positions to sit or lie in and my phone is full of photos of her in a huge variety of different positions. She doesn't use the same space for too long either, she definitely appreciates different views! 

Last year we bought her a tower because she was sleeping on one of our tall speakers. The trouble was she goes into such a deep sleep and the speaker surface wasn't very big so she would fall off! 

They really are a huge commitment but, in my opinion, absolutely worth it. It is not only the love and entertainment that a pet gives you, it is the knowledge that you are giving an animal a second chance and in our case, as we have no children, our cats are our babies. 

We have a lot of love to give and how can you not love this face?! 😹

XxXxX 💕

Support and how important it is!

Everyone talks about needing support and they are right! 

Over the years of having problems with my health, I have come to really appreciate having support and feeling cared about. It sounds like such an obvious statement to say but it's true!

I was always such an independent person. I knew what I wanted and I went for it. But being diagnosed with a chronic illness meant I had to change my way of thinking and it is something that I am still working on......it has never come easy. I never expected to need so much help by the time I'm fifty but I'm incredibly lucky to have my husband, Martin, by my side and helping me with everything. I honestly have no idea what I would do without him. He is my full time carer and he does so much for me/us/Rosie but he will always be my husband first and carer second. 

Support comes in many different forms, there is the support you get from the medical side. Mine started with my GP and then my MS consultant, who has been such a valuable person for me to go to when my symptoms change or I just have questions about the condition. I am so lucky with him as he is one of the best and has been involved with a lot of research over the years. It gives me the confidence to go to him when I do have questions. 

Then there is support from family and friends. 

I am blessed to have some wonderful friends who are really there for me.  

There is also the support you get from friends you make along your MS journey and these can be so important as they really do understand what you are going through. You can lean on each other when you're going through difficult times. 

Of course social media has made it a lot easier to connect with people, whether they are from your past or when you are finding new support along the way. 

On the negative side I have also had people who have stopped contacting me because they haven't known how to deal with my situation but I've tried not to take that to heart. It is a difficult situation because if you don't have experience with illness or disability then it's difficult to know how to react to someone. I have found that honesty is the best policy and I am open and honest about my symptoms.....all of them. 

It is quite obvious that I am disabled, especially when I'm using my wheelchair but just because I struggle physically my brain still works and I would much prefer that people talk to me and ask me questions directly. 

When you are given a life changing diagnosis it can be very easy to dig a hole and stay there, but try and remember that there are people around who are possibly experiencing similar things and who are happy to help you through. I know it's not true for everyone but reach out and there will be someone who will guide you. 🥰 

Sending love and Rosie cuddles

XxXxX 💕

Rosie giving her Daddy a massage!

Peekaboo! 😹

When you have MS.....

When you have MS.....

When you have MS......and then you get something like a cold, flu, sickness or diahorrea it can effect you a lot worse than someone who doesn't have MS. I never really appreciated that until recently when I suffered with a poorly stomach and horrible diahorrea. 

I have, since early on in my diagnosis, struggled with constipation. It wasn't easy to deal with or to talk about to start with, but then I realised it was nothing to be embarrassed about. We all have to deal with our bladder and bowel and we really should talk about it more. If we were all more open about it then it wouldn't be embarrassing to talk about! 

Anyway, last week, for about four or five days I had something that I'm really not used to.......I had diahorrea! It started off as constipation that was difficult to get rid of but after trying a few techniques that I've learnt over the years, I was able to break the dam. This all happened in the early hours of Tuesday morning.

What followed was diahorrea but I expected that because that happens when you have been constipated for a while so I wasn't too worried at that point. The trouble was it carried on for about four or five days and for me to have that problem for that long was most unusual! 

We are fairly sure it was just a bug and for anyone without MS this can be exhausting but I found myself very weak and totally shattered. I even spent one night sleeping in my wheelchair because I was disturbing Martin so much by constantly getting up.

It is the struggle I have just getting out of bed and it's driving me crazy. As my left leg gets weaker, just moving it in and out of bed takes so much effort and when you're weak from being poorly it makes things even harder. Plus you have the anxiety of desperately needing to get to the toilet so using my wheelchair was the easiest thing to do. It was another example to me that the wheelchair is a positive thing and not the negative that I have always seen it. To me, using the chair means that I'm giving in or that I'm just being lazy but I've finally realised that it's not any of those things at all. By using the chair I am helping myself, I am saving energy and am not in so much pain by the effort it takes to use the crutches, especially when you're tired anyway. 

I can't believe it has taken me twenty years to stop being stubborn and to accept this!

It was a difficult week but as always I couldn't have got through it without Martin, and of course, cuddles & entertainment from Rosie!

 

It really brought home to me how vulnerable I am to everyday illnesses and why getting all the vaccinations I can is quite important. Unfortunately I haven't been able to get my flu or covid jabs yet because of having my six monthly infusion of Ocrevus. When you have Ocrevus you can't have vaccinations until a certain amount of time has passed, because your immune system is stripped back. I will be able to have mine in the middle of January so until then I will need to keep away from any coughs and colds! 

 

Please keep yourselves snuggled up, safe and warm this winter.

 

With love and Rosie cuddles

XxXxX 💕

COMING OFF PAIN MEDICATION

Coming off pain medication.

A while ago, when I was in a good place & really positive about being proactive, I decided I wanted to look at all the pain medication I was taking and to see if I could come off any of them. I was looking at how many tablets I take every day & decided things needed to change......if they could. Unfortunately since I had this thought I have had to start taking medication for my bladder so I'm taking two more tablets, but they do make a difference so I guess that's worth it! 

 

Some of the things I take, like Levothyroxin for my under active thyroid, I know I can't ever stop taking but if there are things I could then I at least needed to try! 

 

I spoke to my GP, as I would never try anything like this without their input. She contacted my pain consultant & a plan was drawn up. We started off with Pre Gabalin also known as Lyrica & I was taking 300mgs twice a day.

At one stage I did manage to get down to 75mgs twice a day and I was tolerating that quite well but then I had a fall & ended up with sciatica in my arm.....who knew that was a thing?! I get a fizzing pain that goes from under my arm, down to my hand but only in my left arm!

So now I am back up to 150mgs twice a day but at least that is still half of what I used to be on! One of my reasons for trying to come off these drugs was to see if they were doing anything for me & it turns out some of them were! 👍

The next one I wanted to try was called Tapentadol or Palexia. I was on 300mgs twice a day. Again, I started the withdrawal slowly & with the guidance of my consultant/GP. 

I am absolutely delighted to say that I have completely come off that medication and I can't tell you how much it has changed my life and I mean completely! It has really woken me up, literally, but also to the impact that medication has on us & not always in a positive way. I thought that a lot of my issues were symptoms of my MS but instead, it turns out that some things were actually side effects of the medication. 

I really struggled with fatigue, which is a symptom of MS, but what I hadn't realised was the impact the Tapentadol was having.  I generally wouldn't be able to get up before about 9am, on a good day, and I would be in bed by about 5 or 6pm. I came off the medication and now I am up anywhere between 5.30 & 6.30am, EVERY morning, and I stay awake until about 9 or 10pm and this is a daily occurrence! 

It has blown my mind & I feel like a different person! 

It's a bizarre turnaround but one that I have really welcomed. It's as though I have literally been woken up, I feel more alert and it's given me the realisation that I can't just blame everything on the MS. It's so easy to do that because it is a condition that has such a big range of symptoms and affects everyone SO differently. I've always said that you could have a room full of people that all have MS and we would all be different. Different symptoms, affecting us in different ways with totally different experiences. It's what makes diagnosing MS so difficult, it has to be given time to see what happens which can be incredibly frustrating for both patients and doctors alike.  

In a way I was lucky with my diagnosis. I was referred to a consultant, who turned out to be one of the best, and I was officially diagnosed about 6 months after my symptoms started. I know that some people can go many years before they get a diagnosis and I can't imagine how frustrating that must be. I remember wondering if I was going mad and it was all in my head? My issue was that a lot of my initial problems were altered sensations on my skin and that wasn't something you could show people.....it still isn't! It's why, from the beginning, I have always found ways of trying to describe what the pain feels like so that I can try and give people some sort of reference.

 

With medication, it is a really important point though, you only want to be on things that are actually doing something for you. I have been on so many different medications over the years, many of them were trying to target my neuropathic pain and I always just assumed that they would be doing what they were prescribed for. That was when I hadn't had any experience with taking meds and didn't realise that not all medications work for everyone. 

With a condition like MS, things change over time and that is something that I didn't factor in with my medications. I would have come off or reduced my pain meds over the years if I had realised. Things that were prescribed for me ten or fifteen years ago haven't been or aren't working in the same way now because my symptoms/body has changed, so it is always worth reviewing them every now and then. It has taken me twenty years to work that one out! 😂

Sending much love & Rosie  cuddles to you all

Amelia

XxXxX 💕

It's been a while - continued!

It's Been A While - continued!

 

Hi everyone!

I hope you are all well? 

So continuing my update here are some more of the things that I've been dealing with! 

My left arm and hand are noticeably weaker, I sometimes have difficulty cutting up some of my food. I have a very weird sensation in my left thumb which feels as though it's numb but a strange painful numbness. It's hard to describe, it's not an acute pain but a really odd altered sensation that I find quite bizarre.....but that's my body for you! 😂

I started having trouble with my bowels quite soon after I was diagnosed with MS & for many years now but that was helped greatly by the Bladder & Bowel team. I felt I was lucky that my bladder seemed ok, well unfortunately that has changed now. 😞

I spoke to the GP back in May & a referral was sent so when I hadn't heard anything after a few weeks I phoned them, only to be told it was a 6 to 9 month wait for an appointment! What was I supposed to do in the meantime?  

We had to change our GP as our original one, who had been our Doctor for about 15 years and had seen us through my diagnosis of MS & then Meniere's disease and had helped save Martin's life in 2012 by getting him diagnosed with Whipple's disease (not to be confused with Whipple's procedure!) retired.

Fortunately, now we have a lovely GP, who prescribed me some water tablets, one for water retention & one for bladder weakness, which have been very useful and I'm thankfully able to manage it a little better! In the meantime she also got on to the Bladder & Bowel service and I have had an appointment through for the end of November! 👍 Fingers crossed that they can advise me on the best way of managing the issues I'm having with my bladder.

I have always experienced neuropathic pain, in fact that was one of my first symptoms and I can genuinely say that I haven't had a day without pain since it started back in 2002. 

It's a very bizarre sensation and one that you have to learn to live with or it will drive you crazy. 

I have pain all over my skin but it started along the bottom of my feet, my legs and my lower back. I have always said that the pain along the bottom of my feet is like when you are walking along a beach that has that gritty kind of sand.

My lower back is a sensation as though someone is stabbing you with a handful of pins. It is a type of burning sensation. 

I also now have a buzzing sensation, all over my body, as though someone has plugged me into the electricity. 

As I sit here and concentrate on it, to describe it to you, it makes me feel quite sick, so I try not to think about it too much! 

I have realised that I am now needing to use more equipment to help me with everyday things. I found this really frustrating and I would get really annoyed about needing to use things but I am slowly realising that these things are there to help me and I shouldn't look at it as a negative. It is allowing me to continue doing things myself or it is conserving my energy so that I am able to carry on doing things throughout the day. 

My one big example of this is that I am still getting around by using my crutches although over the past few months I have been finding that a lot harder. I have an amazing electric wheelchair at home, that I have been very reluctant to use because in my mind I feel that once I start using it I won't stop! My thought has always been to keep staying on my feet for as long as possible and that the reality is that I'll be in a chair soon enough so I've never wanted to "give in". I'm now realising that by pushing myself to keep using my crutches hasn't been as useful to me as I thought it would be. By staying on my feet I've been pushing through pain, which is exhausting, and I've been using up energy that I haven't got. So I'm now using my electric wheelchair a lot more and have accepted that it is helpful and I'm not giving in at all! 

I am trying to learn that not everything is a negative too. I have always been getting frustrated at what I can't do but, with help, I am learning to turn things around and look at what I can do instead. 

I am needing to ask so much more of Martin, which I have found difficult. Not because I can't ask for his help, far from it, he is the one I always turn to. But I was always taught to be as independent as I can and to stand on my own two feet! So being in a position where I can't stand on my own two feet, sometimes literally, and that I have to ask for help has been quite challenging for me. I've never been one to sit there and let someone else do something that I could do but I'm now having to do that and that is a hard thing to get my head around! My head is my own worst enemy a lot of the time because I can see things that need to be done but I can't actually do them myself and have to ask someone else, which most of the time is Martin, to do things for me. I'm realising that trying to do something that I can't do is putting me at risk of having an accident and causing more problems which really isn't much help at all! 

It really can be easier said than done and it's a hard and frustrating lesson to learn but I'm getting there........slowly! 😃

Sending love and Rosie cuddles!

XxXxX 💕

Ocrevus - Ocrelizumab

OCRELIZUMAB INFUSION 

OCRELIZUMAB or OCREVUS for short is a Disease Modifying Drug (DMD) which basically means that it is used to try and reduce the amount of relapses a person might have.
This therapy is given when a person has 'active' relapsing MS, this means when someone is shown to be having relapses or that there are new lesions on their MRI scans. In my case my yearly MRI scans had shown new lesions on both my brain and my spine in 2022 & 2023 and I had experienced relapses twice over a thirteen month period, which was incredibly frustrating!
Ocrevus is given every six months as an infusion, although the first amount is given as two doses to allow your body to tolerate it. You are also given a Corticosteroid and Antihistamine, which are given as a combined infusion, one before Ocrevus and the other after it. This is done to help combat any side effects you may experience as a result of the Ocrevus infusion. I am monitored very closely throughout the whole process and where I have mine done, a special unit has been set up. They use it for various different treatments and it means there are fully qualified nurses who are experienced with a variety of treatments. I have found this valuable as I am not the easiest patient! Fortunately, as my veins are not easy to find, I had a portacath (sometimes called a TIVAD) put in my chest a few years ago, when I started having Lidocaine infusions to help with my pain. The nurses always had difficulty finding a vein but then, when they did, I would find it excruciating when they put a needle in. It feels as though a red hot poker is being stabbed in my arm because of the neuropathic pain I have all over my skin. This was why the portacath was suggested & subsequently put in my chest as it helps both me and the nurses!

I have tried a lot of the different DMD's, that are available, over the years and there are many more available now than when I was first diagnosed! The list of treatments that I have tried over the years are as follows, some were more successful than others!
I started on Rebif, then went on to Avonex, both of these were subcutaneous injections which I was taught to give myself. After those I went on to Tysabri, which was a 4 weekly infusion. This was when I was given my first portacath which made life a lot easier! I was on Tysabri for quite a while but it didn't feel like it was actually doing anything for me so, after talking to my consultant, I stopped it and the portacath was removed.
I wasn't on anything for a while after Tysabri but when it was suggested that I try another DMD the next one suggested was Tecfidera. This was a good one because it was a daily capsule taken at home and they were sent directly to me, so I didn't have to go anywhere for my treatment!
I stopped Tecfidera in March 2020 and I wasn't on anything until I started Ocrevus in October 2022!
It is an incredibly difficult decision when deciding whether to start or stop a treatment, it comes down to your decision, which is good but I never make that decision without the input of my consultant and Martin. I'm lucky with the support of both these people, my consultant, a professor, is very experienced and with Martin, he is the one who lives with the consequences of any of our decisions. I say 'our' decisions because any of my decisions are made with the full input and support of Martin. I couldn't do any of it without that support.

Back to Ocrevus! I am about to have my next infusion, it will be my third dose. I have to have a blood test a week or so beforehand so that they can check that I haven't got any infections.
I block out the whole day for my treatment as it is three infusions with breaks needed to check for reactions etc. We make sure we have food and drink with us and I always take things to read or my phone to play games but I usually end up just talking to the nurses or other patients!
The day starts off with a urine sample and then as long as everything is good I have the first corticosteroid & antihistamine infusion. This can make me feel a bit flushed but it is better than the possible side effects of the Ocrevus! After a 30 minute break I'll then start the Ocrevus infusion which takes about two and a half hours, depending whether they have to slow it down for any reason. After another 30 minute break I'll then have the next corticosteroid and antihistamine infusion. Once this is done and provided I'm not feeling any side effects, we can go home!
This is given every six months which is a big improvement on an infusion every four weeks or a daily capsule! It's all still pretty new to me and my body so I can't say for sure whether it is successful for me yet. Time will tell and I'm ever hopeful so we're just keeping our fingers crossed for now!

XxXxX 

IT'S BEEN A WHILE!!!

It's Been A While!

 

Hi everyone!

I hope you are all well? 

It's been about 6 or 7 years since I last wrote a post on here, quite a lot has changed and I needed somewhere to process it all.......so I've come back here!

We, Martin, my amazing husband and I, moved to a wheelchair accessible flat in 2015 & I can't believe we have been here over 8 years! We lost our two precious cats, Barnaby & Kit Kat but now we have a complete nutter called Rosie, a Persian cat who entertains us daily! 😻

It turns out that, as of 2023, I have been diagnosed with MS for twenty years, how did that happen? I also turned 50 this year and my wonderful husband, Martin and I celebrated our 25th wedding anniversary and after everything we have been through over those years - 28 from when we got together, it's been quite a year of reflection.

When I think back to my first symptoms of altered sensations over my lower back, down my legs and over the bottom of my feet, to today where I'm struggling to use my crutches, my left leg is very weak, it gets occasional spasms, I can't walk too far and I'm using a wheelchair a lot more of the time, to name but a few, it is quite a difference and not necessarily a positive one 👎

My left arm and hand are noticeably weaker, I sometimes have difficulty cutting up some of my food.
I've had trouble with my bowels for many years now but that was helped greatly by the Bladder & Bowel team. I felt I was lucky that my bladder seemed ok. Well that has changed now and I'm waiting on a referral back to the Bladder & Bowel service. I spoke to the GP back in May & a referral was sent so when I hadn't heard anything after a few weeks I phoned them, only to be told it was a 6 to 9 month wait for an appointment! What was I supposed to do in the meantime?  
Unfortunately we had to change our GP as our original one, who had been our Doctor for about 15 years and had seen us through my diagnosis of MS & then Menieres disease and had helped saved Martin's life by getting him diagnosed with Whipple's disease, retired.
Fortunately, now, we have a lovely GP, who prescribed me some water tablets so I'm able to manage it a little better until the long awaited referral!

I've had a couple of relapses in the past couple of years, one in March 2022 & another in April 2023. I've got a fantastic consultant who got me straight onto steroids, which I hate but they did help! I'd been having yearly MRI scans and after this latest one in April my consultant informed me that my MS has changed. I have new lesions on my brain & spine. It's very disappointing but at least it explains the new symptoms and deterioration. My legs have got worse, I've got issues, as always, with my pain, I'm struggling with my bladder & my mood has taken a dip.

I came off the DMD (Disease Modifying Drug) that I was on, Tecfidera & am now on something completely different called Ocrevus. It is another DMD and is an infusion but this one is given every six months. I am at the hospital for about 6 hours because they give you 3 infusions. There's one before & after the actual Ocrevus which are an antihistamine/steroid mix, this is to help you tolerate the drug & help with the side effects. I have mine done at a special unit in Plymouth and they are fantastic! I started in October last year - 2022 and so far I have tolerated it ok! 🤞

I am still having my Lidocaine infusion which I have been having every eight weeks over the past few years (unless the hospital can't get me in!) I find it really helps me for about six weeks & then generally wears off. It doesn't get rid of the pain but it makes things a lot more manageable! Unfortunately this treatment has become very successful & popular and the hospital isn't set up for the demand. I have been told that they are having to go to a twelve week plan now, which I am not happy about 😠 I definitely notice a difference once I'm over eight weeks & things can become unbearable. I am in discussions though & my GP is helping me to find a solution as the Lidocaine really helps me to manage my pain.

A while ago, when I was in a good place & really positive about being proactive, I decided I wanted to look at all the pain medication I was taking and to see if I could come off any of them. I was looking at how many tablets I take every day & decided things needed to change......if they could! Some of the things I take, like Levothyroxin, I know I can't stop taking but if there are things I could then I at least needed to try! I spoke to my GP as I would never try anything like this without their input. She contacted my pain consultant & a plan was drawn up. We started off with PreGabalin also known as Lyrica & I was taking 300mgs twice a day. I managed to reduce this one by half. I tried to go lower but my body couldn't handle it so I am now on 150mgs twice a day although in the future I might go back & see if I can revisit lowering that one further. I did manage to get down to 75mgs twice a day but then I had a fall & ended up with sciatica in my arm.....who knew that was a thing?! So now I am back up to 150mgs twice a day but one of my reasons for trying to come off these drugs was to see if they were doing anything for me & it turns out some of them were!

The next one I wanted to try was called Tapentadol or Palexia. I was on 300mgs twice a day. Again, I started the withdrawal slowly & with the guidance of my consultant/GP. I am delighted to say that I have completely come off that medication and I can't tell you how much it has changed my life........Genuinely! It really has woken me up, literally, but also to the impact that medication has on us & not always in a positive way. I thought that a lot of my issues were symptoms of my MS but instead, it turns out that some things were actually side effects of the medication. 

I really struggled with fatigue, which is a symptom of MS but what I hadn't realised was the impact the Tapentadol was having.  I generally wouldn't be able to get up before about 9am, on a good day, and I would be in bed by about 5 or 6pm. I came off the medication and now I am up by anywhere between 5 & 6.30am every morning and stay awake until about 9 or 10pm......and this is a daily occurrence! It has blown my mind & I feel like a different person!

As always, throughout all of this, is my amazing husband, Martin. I wouldn't be managing at all if I didn't have him & I don't know how I got so lucky!

Having celebrated 25 years of marriage I realised that we'd only been married for about four years when I got my diagnosis and rather than bolting for the door, Martin has been by my side every day. As I become more disabled he is having to do more and more for me. I wish people could see just how much as carers are really the unsung heroes of our society.

 

Well, that's my update for now but I hope to be writing more regularly again now so it would be great to hear from you all and see how you are all doing!

 

Sending out love & very much needed Rosie cuddles! 😻

Big hugs XxXxX 💕