Birthday's and Spirited Away

So it was my birthday a couple of weeks ago and I did one of my favourite activities, eating ice cream! 🍨🍦🍨

We have a wonderful ice cream parlour, quite close to where we live called The Orange Elephant! When you drive along the dual carriageway, near to the turn off, there is an orange elephant statue with an ice cream in its trunk! Martin, my husband, and I have often commented on it in the past, never realising the significance of it 🤔 We only found out last year and it has become a place we like to visit on special occasions. 

What better place to go to on your birthday then?! 🍦🍨🍦

I have to admit I was a little worried about how I would be feeling over my birthday period because we had been to London just a couple of days before. We had been up to the London Colosseum to see the live action show Spirited Away. 

For anyone who doesn't know, Spirited Away is a Japanese animated film that was released in 2001. It was created by Hayao Miyazaki and Studio Ghibli and it is a most wonderful film. There have been many films released by Studio Ghibli and they are all beautiful but Spirited Away has always felt special to us. 

The Soot sprites! 

When Martin found out that they were bringing the live action show over to London from Japan, we were very excited and decided that we would try and get tickets, if we could. We found out that there was a dedicated phone number for disabled customers and we were ready to phone the minute the tickets went on sale! We thought we might have trouble getting through to someone but we were very lucky and got through quite quickly. 

We had bought our tickets, they were in a box as I knew I would need to go in my wheelchair but, I decided that I would transfer to my seat as I thought it might be more comfortable and convenient. 

We had booked tickets for a Wednesday matinee as we live such a long way from London. First of all we had thought that we would go up and back on that day but after thinking about it, it is about a four hour drive from where we are, we decided to book a Travelodge outside London so that it would break up the journey for Martin, who has to do all the driving. I haven't renewed my driving licence as I have to have a medical licence that only lasts for three years and as Martin loves driving, it's not a problem. 

We are both so happy that we got tickets for the show as it was amazing. It was beautifully done, using puppetry to bring some characters to life. That was so clever and I didn't look at the people operating the puppets, they were just so convincingly performed! 

Martin and I are both theatre nerds, as that is how we met, we were both performing, having trained in London! We also both worked in theatres in London before we moved down to where we are now, and it was only four years later that I had my diagnosis of MS. I'm so glad that we are living here and not in London because even though it is better, London is not disabled friendly 😔 But we were very lucky when we drove up because we managed, quite by accident, to get a disabled parking space just a couple of streets over from the theatre! We were right in the centre of London, so someone was watching over us that day! 

We had a wonderful time and thoroughly enjoyed ourselves. It was a great treat for us both and, as our birthdays are only eleven days apart, we bought it for ourselves as our birthday treat and what a treat it was ☺️ 

XxXxX 

As always, I will leave you with some special Rosie love! 😻

A special birthday gift! 😹

"Can I play with the wrapping please?!" 😹

Menieres disease and MS 😱

More than ten years ago now I was diagnosed with a rare ear condition called Menieres Disease - don't worry, I'd never heard of it either! 

It is a condition that can cause sudden attacks of vertigo and can affect your hearing. 

I would have these awful attacks of vertigo. It wasn't suddenly being afraid of heights but the feeling that the room was spinning, my balance wouldn't be good and I would feel, and sometimes be, horribly sick. For me, the only thing I could do would be to go to bed, close my eyes and try to sleep. Fingers crossed, when I woke up the attack would be gone. 

The trouble was, I had no warning of these attacks, it would happen completely randomly and out of the blue. It was one of the reasons that I stopped driving, I couldn't guarantee that it wouldn't happen while I was at the wheel and that was just too scary. 

It also caused real problems with the hearing in my left ear. I have been left with very little hearing and I have constant tinnitus but all just in my left ear. 

Tinnitus is the name for noises that don't come from any outside sources. You can hear noises such as whooshing, ringing, buzzing etc. and it can come and go or be permanent. My tinnitus is like hearing a waterfall in the background and was very off-putting to start with but I got used to it fairly quickly. 

I was given a hearing aid back then but eventually I stopped using it. I found it just made things harder to hear if I was in a crowded space and so I just adapted to my reduced hearing. 

Luckily after a few years, the vertigo attacks burnt out and that was such a relief. I haven't felt anything as awful as those attacks. The dizziness and feeling as though everything was whirling around me was just so unnerving and made me feel so poorly.

I have recently had a problem with my right ear, which took me straight back to those days and made me incredibly concerned that the Menieres was back but affecting my right ear now. Apparently, it's unusual, but it can affect both ears and the way my body challenges me, I wouldn't have been surprised if that was the outcome. 

I had experienced a very short vertigo attack several weeks before but it wasn't very dramatic and only lasted about ten seconds. That was quite unnerving too as I thought I was done with that. It didn't continue though so I didn't think much of it. 

Then last week I woke up with the same reduced hearing and tinnitus in my right ear. I really did start to panic as, to me, this was typical Menieres. 

Martin, my wonderful hubby, firmly encouraged me to contact the doctors and after getting in to see a nurse, she ensured me that it was almost certainly an issue with inflammation in my ears inner tubes and she prescribed an anti inflammatory spray. She told me it could take up to six to eight weeks to clear but it would probably be sooner, I had my fingers crossed that it would be. 

I am now about two weeks on from waking up with muffled hearing in my right ear and I'm pleased to say that it has almost cleared and the hearing has vastly improved. I am so relieved because it really did challenge me. The tinnitus and lack of hearing is still there in my left ear but after so many years having that, I am so used to it now and I can manage on a daily basis, but having the right ear affected too was really unpleasant so I'm glad that it has returned to almost normality, well normal for my body anyway! 😂

May is birthday month in our household with all three of us having been born in May, so we are sending out much love to all those who are also celebrating a May birthday! 🎂🥳🎉

XxXxX 💕

As always here is some special Rosie love for you all 😻

MRI SCAN NUMBER???

I had another MRI scan yesterday, I can't tell you what number it was though as I've had so many over the years.

I had my first scan back in 2002 when I had my first symptoms. I had no idea what it was or what it would involve and I'd be lying if I said I wasn't a bit nervous. I remember a friend saying to me to keep my eyes shut, so that you can't see how enclosed the space is, it was the best piece of advice as I know it is incredibly tight and I still do that to this day.

Unfortunately as I am not very active and am not able to move very well, I have put on weight over the years. It has always been something that I am quite sensitive about as I was a trained dancer and I know all about body conditioning but it has all gone out the window as I am unable to do any of it anymore. I wasn't sure how I would feel about going in to a tube to be scanned when I had my first one, but I have actually found that as long as I keep my eyes shut and I take my mind off to somewhere else, I am able to get through it okay.

As with everything, things have changed over the years too. Where I have had my scans they have provided headphones and will play a radio station for you to listen to but I was in a different scanner yesterday so there wasn't any music. You are given ear plugs anyway as the scanner is very loud and they still put headphones on you so that they can communicate with you while you're having your scans. When I had my first scans, over twenty years ago, I used to sing lots of songs in my head. I had been involved in lots of musicals over the years and so I would just sing the lyrics to myself and that would help make the time go by. It's what I did yesterday too 🎶

It goes without saying that I think I am quite strange. I have a body that never wants to work with me and always does strange things and falling asleep while I'm having an MRI scan is definitely a weird one. The scanner is very loud and it's not somewhere you would automatically think of to catch forty winks but I guess I am so used to it now and I imagine myself being somewhere else, I have my eyes closed anyway and I just find myself drifting off, it really does help the time go by quite quickly. True to form, I drifted off yesterday! 😴

The timings of the scans can vary as it depends how many parts of your body they want scans of. I had my brain and spine done yesterday, which is fairly standard and took about forty minutes. They have to move you up and down the tube depending on which body part they are doing. Sometimes they want to inject a contrast dye into your veins. I believe that it is just so that things will show up on the scan more clearly, which is fine, as long as they can access your veins successfully. This is another area where my body and I don't see eye to eye. My veins are not easy to access and because of the painful sensations in my skin, it is why I have a TIVAD (Totally Implantable Venous Access Device) in my chest, but not every hospital have nurses who are able to access it, but that's another story!

You don't get the results of the scans straight away as they have to be looked at by a radiologist. The results will go to my consultant and he will then let me know if there have been any changes since my scan last year. 

I've learnt not to expect anything anymore as, when I had scans taken over the first few years, I would feel that there had been changes to my symptoms but the scans wouldn't show anything. It was incredibly frustrating because it made me feel as though I was making it up. Now though the scans have been showing changes and I'm frustrated about that because it confirms my deterioration - I can never win 😳

So that's my MRI done for another year, now I can think about the next appointment which will be my next dose of MS treatment, Ocrevus, which is next week.......where did that time go?!?! 

XxXxX 💕

As always, Rosie is sending her love to anyone who needs it xxx 😻

In her own little MRI "tube"! 

Chronic pain Vs Acute pain

What is the difference between Chronic pain and Acute pain? 

Acute pain is normally a short timescale. It is the pain you feel after an accident, an injury or operation and generally will resolve itself once the body has healed.

Chronic pain is pain that continues after the body has healed or it is pain caused by nerve damage. This tends to be long lasting and doesn't necessarily resolve itself.

The pain I have is chronic pain, caused by nerve damage and I have had this pain since my symptoms first started back in July 2002. I can genuinely say that I have not had a day without this pain since it started all those years ago. 

Altered sensations and pain were among the first symptoms I experienced. I woke up one day with, what felt like, pins and needles in my left leg and the bottom of my feet. I thought I had slept awkwardly and assumed it would resolve itself but after a few days it was still there with the feeling more intense. 

I went to my GP surgery and, over a couple of weeks, I'd seen most of the doctors there. I had been given various suggestions about what it could be but each time I would go away and hope it would resolve but it didn't. 

I then saw a doctor who did several checks and eventually said that he wanted to refer me to a consultant neurologist. It was like he was speaking in a foreign language, I had no idea what he was talking about.

A consultant neurologist is someone who specialises in conditions that are caused by nerve problems or damage.

I got an appointment at our local hospital with a neurologist and was told he suspected Multiple Sclerosis. He hoped it would be a one off episode and that the altered sensations and pain would go away but it would need time for us to see what would happen. 

I ended up in the hospital in Plymouth, about thirty five miles away 

He organised the standard tests to diagnose MS, an MRI, Lumbar puncture, Evoked Potentials and various blood tests. You also have to give it time, to see what happens, whether the relapse resolves and leaves you with no lasting issues or if you do have symptoms, you need to see how those affect you. 

I know it sounds strange but I think I was actually really lucky with my diagnosis. I know of people who have struggled for years with various symptoms, that have come and gone over the years but have not had a definitive diagnosis. My symptoms started and within about six months I had a definite diagnosis. 

Finally, what I thought was all in my head and I was going mad, had a name and was a reason for what was happening to me. It was still very scary and I knew we needed time to see how my symptoms would develop, or not, as the hope was. 

Unfortunately a few months after my first symptoms started, I had another relapse, which was quite debilitating and left me in hospital. I have been on crutches ever since that relapse. 

It was about this time that I learnt about chronic illnesses and the difference between acute and chronic symptoms. My head was in a total spin but I had been referred to a wonderful consultant neurologist, who I still have today and is now a Professor. I'm so grateful for all the patience and support he has shown Martin and myself over the last twenty years. It is the support from the people with all the medical knowledge over the years, that has been so valuable to us both. My consultant, my wonderful GP and physio and all of the various services that I've used over the years, I am so grateful to them all. I knew that these people and services existed, but I'd never needed to use any of them until I was diagnosed with MS and suddenly a whole new world opened up for us. A huge thank you goes out to our wonderful NHS 🧑‍⚕️

It's amazing what an impact being in chronic pain can have on your quality of life. I wish I hadn't taken for granted all the things I used to be able to do, but I'm trying to look forward now and appreciate all the positive things I have in my life, of which there are many! 😄

XxXxX 💕

As I always like to share, here is some Rosie love for everyone 😻

At last!

At last........I have finally had my lidocaine infusion! 

It was about two weeks ago, and I am feeling about as good as it gets for me 🤩

It always takes a few days for the infusion to kick in, so the first two or three days I am pretty wiped out, because of my body's reaction to having such a hit of medication. I really do notice a difference when the lidocaine gets into my system though. The constant buzzing, the burning sensation in my back and the painful altered sensations all die down. None of it goes away but it gets a little less intense and allows me to function a little better.

While I was waiting for my lidocaine infusion, I took one of the drugs my pain consultant prescribed, in a bid to help with the pain. The drug is called Nefopam and I, hesitantly, will say that it did help. It didn't miraculously make the pain disappear, unfortunately, but it did help and the proof of this was last Tuesday, four days after my infusion. I had a physio appointment and after I had caught her up with what my pain consultant had suggested, I started going through some of my physio exercises. I have only had a couple of cycles of going through waiting twelve weeks for the lidocaine, and not eight, and those extra four weeks have felt like I have taken one step forward and two back, as far as my physiotherapy was concerned. So after my infusion it would take me a week or so to get back to doing a good set of exercises, where I would feel I was fairly strong, or as strong as it gets for me. Well much to all our amazement, I had a really good session last week. I was able to do two sets of balances for thirty seconds and my physio was thinking back to when I started doing it and I could barely do it for five seconds! 

I also managed a few other exercises and it all felt really positive. She pointed out that taking the new drug, even for just a few days, was well worth it, so we will see what happens when I take it before my next lidocaine infusion and whether it makes a difference again. I really hope so because I felt so positive after that session. Don't get me wrong, although it was really positive, I wasn't walking out of there without needing crutches or a wheelchair........I wish, but I wasn't in as much pain and I felt stronger both physically and mentally so that has to be a good thing 😊 

I have been doing physio, this time, for over a year now and, although quite small, the improvement has been noticeable to my physiotherapist. She has been a wonderful support and has given, and is giving, me lots of exercises to try and build up the strength in my legs. I have been working hard and I'm doing all I can to stay on my feet for as long as possible. Although it's never as good as I want it to be, I know that I wouldn't be doing as well as I am without her support so that has been really valuable to me and I appreciate it very much. 

I keep reminding myself though, that any improvement is only going to come from me so I want to keep at it 💪😂

XxXxX 💕

As always I'm sending out some Rosie love to you all, so enjoy😻

Pain Consultant Appointment, at last!

So I've finally had my appointment with my pain consultant. We, Martin, the consultant and I, worked out that it's been over eight years since I've had a face to face appointment with him. 

He is a lovely man and I'm acquainted with his wife so firstly we had a good catch up, then I went in to the subject of the lidocaine infusions and that I can't manage with the time schedule being moved from every eight weeks to every twelve weeks.

For anyone who is reading my blog for the first time, I have been having lidocaine infusions for several years and they have always been every eight weeks, except when there is a pandemic, but about a year ago we were informed that the schedule was changing to every twelve weeks. The trouble is that my pain is more manageable for about six weeks after the infusion but by eight weeks I am definitely ready for the next one, so pushing it to every twelve weeks filled me with dread. 

My wonderful GP has been pushing for a face to face appointment with my pain consultant for a while and I was relieved when I got the date through to see him. I explained to him how everything was affecting me and that I really needed to stick to eight weeks but he explained that if he did that for me he'd have to do it for everyone and they just don't have the staff or the space/beds to accommodate it. 

So what was I to do? 

My consultant has given me a prescription for two different medications to try. They are medications that I can use for the four weeks and then stop until the next time I need them, they don't need to be built up over time. It's the perfect time right now because I am right in the middle of weeks eight to twelve, so I am going to see whether either of these have any effect🤞

I have a bit of a history with different pain medication, including opiates. I have tried a lot of different medications, over the years, to try and lessen the nerve pain I have, but I struggled to find anything that would help. 

I had a situation back in 2012 where, unbeknown to me, I had become addicted to an opiate called Oxycodone, this was before all the uproar in America. I had to go into hospital to withdraw from it, so I'm very hesitant to use opiates again. But I trust my consultant and whatever I use, it is only going to be for weeks eight to twelve and then I can stop taking it until the next time. 

He has prescribed Clonidine and Nefopam. I am to try one for a couple of days and see if it helps, then I can try the other one. I am having my lidocaine infusion on 8th March and I can report back to the nurses whether either of these have helped. The other thing that he has told me is that one of the other pain meds that I am already taking, called Duloxetine, I can increase that up to double the amount and see if that helps. It is another one that I am able to increase and then I can decrease it once I've had the lidocaine. 

It will be a bit of a trial for the first couple of times, to find the right combination of meds that give me relief, but I'm used to that and have learnt to have a bit of patience until I get the relief I need but I'd be lying if I said it was easy 😞 

Actually the relief I need would be to stop all the buzzing, the pins and needles and burning sensations that I have but as I know that the MS has caused the damage and that isn't going to happen, I need to make the best of a horrible situation, so it's onwards and upwards 😀

Amelia

XxXxX 💕

As always, I like to share a bit of Rosie love, she is such a sweetheart! 

She actually sat on my lap for the first time in ages! 😻

18 days.......but who's counting?

So, I have 18 days to go before my lidocaine infusion and a week before I see my pain consultant. I am trying to keep myself distracted and not counting every minute but it's proving quite difficult. 

I have had, a few times this week, a feeling like the nerves in my body have felt as though I've been plugged into the electricity. It feels like they are pulsing and as well as being painful it can be distracting too. 

I also find myself holding so much tension in my body. I try to catch myself doing it and release the tension but it's not easy. 

I've been trying to keep myself as active as I can be, which is pretty difficult when you can only mobilise with crutches. There have been many times over the years where I just want to throw them away but what good would that do, apart from leave me stranded. It's so frustrating, I just want to get up and walk across the room but I can't without the palaver of getting myself set up with the crutches, getting steady on my feet and only then can I move forward. Don't expect to need me in a hurry! 😞

I've been having regular physio sessions and I'm lucky to have a great physio. She is helping me to keep as active as I can be and to keep as much strength in my legs and arms as possible. 

I know it will shock those of you who know me but I've always been quite headstrong and determined 😂 that does come in handy though because it is helping me to keep going with my physio exercises. 

Every morning, and I have done this over the past few years, I do some of my exercises and I do lengths of our living room. I basically walk back and forth across the living room/kitchen. I used to be able to do this ten to fifteen times a couple of times a day but now I'm lucky if I can do it five to eight times, once a day, but I guess anything is better than nothing right? 👍

I remember why I started doing this, I got a watch that would remind me that I hadn't stood up and moved for a while. It also counted my steps and I became obsessed! I worked my way up to walking across the kitchen and living room and bear in mind I am always using my crutches, so it's never very pretty. 

But I became obsessed with how many steps I was able to do and I would try and do that many each day. I'd be delighted if I did more. Obviously if I went out that would boost my tally and I remember when I was able to do a thousand steps or more, now though I'm only managing about four hundred a day but it's always better than nothing.

I always try and do some physio exercises when I get up in the morning, which is now between 6am and 7am and I try and do some lengths of the living room/kitchen. It would be easy to not do anything but as I said, I'm headstrong and determined and I want to be able to do as much for myself for as long as I can, so I keep going with everything. 

It's also a great distraction from my nerve pain because it gives me something else to focus on and that really helps me and when I'm able to achieve something that I couldn't manage on my own before, it gives me the encouragement to keep going.......so I will, for as long as I can! 

Have a good week everyone!

XxXxX 💕

As always I will share some Rosie love with everyone 😻