So, it's October which means Martin and I have been on our changed lifestyle for almost ten months now and we love it!!
But, let's start at the beginning!
At Christmas, Martin and I were having a discussion about weight and we both said that we would like to lose some if we could so we were talking about how we'd like to do it and all I knew was that I absolutely did not want to be on a diet! Now I know that sounds ridiculous.......how can you lose weight without being on a diet, what I meant was I didn't want to be following a diet, I have tried so many of them in the past and I, notoriously, don't stick to them and then I will end up putting even more weight on and be bigger than before I first started! I decided that if we were going to do this, our lifestyle would have to change. Martin decided that he wanted to follow Weight Watchers, which was perfectly fine but he was on his own with that one!
We have a bit of a history with Weight Watchers as back in 2001 we both joined it and between us we lost in excess of 7 stone/44.45kgs in around eight months. We did that by joining weight watchers and getting all the books etc but then following it at home. We have gone back to that diet several times over the years but this time we needed to make a lifestyle change and look at it in a different way. This needed to be a permanent change, we didn't want to lose lots of weight, stop whatever we were doing and gradually put the weight back on which, again, historically, is exactly what we have done over the years, so this time it needed to be different.
It's funny isn't it, the memories I have of my childhood, I have myself as having a weight problem and yet when I look back at photos of me through my earlier years, I don't look "overweight" at all! The trouble was that I was always dancing or rehearsing for a show and I had decided that I wanted to go to a theatre college in London so image was everything.
I started dancing at the age of three and I loved it but it meant hours of looking at yourself in a mirror! I don't have very cooperative genes either so I was never going to be stick thin!
Then I was diagnosed with MS and I had a big relapse where my legs stopped working properly and I've been on crutches or in a wheelchair ever since. So when you are prone to being a bit larger and then you lose your ability to move around as you are used to, it's a recipe for disaster........no pun intended! Plus my head was all over the place and food is my "go to" comfort so it was inevitable that I was going to put on weight. What I hadn't realised was, as I explained earlier, I would start a diet but give up and whatever weight I lose goes back on plus loads more.
And, ultimately, Martin and I love food.......just all the wrong types of food!
So, back to Christmas! 🎄☃🎁☃🎄
We wanted to lose weight but we needed it to be a long term change.......for the better.
Martin signed up to Weight Watchers, he wanted the structure of having a specific routine, whereas I needed it to be freer......if we popped in to see my Dad, I wanted to be able to have a biscuit.....or three, when he made us a cup of tea! I didn't want to be restricted on what I could and couldn't eat, now don't get me wrong, I think Weight Watchers is fab but I had that light bulb moment a little while ago that I can't follow a diet because, in my head, there has to be an end point and we then go back to how we were eating before the diet.........I know, that sounds ludicrous but that's how my brain worked lol!
But not any more!
This change needed to be a permanent change which meant a fundamental change in our lifestyle. We needed what we were doing to become our norm and not just something we were doing to lose weight.
Having a couple of chronic illnesses and wanting to lose weight, I knew it wasn't going to be easy but that is where Martin has been invaluable with his help and support. With him doing WW I have probably done better than I might have done because I've used him as a guide!
Whenever we have dieted in the past we would weigh on a Monday and then Monday night would be our "treat night". This would give us the chance, if we were craving something, to have it on that evening. This was fine except as we got further down the line we would be using it as an excuse to eat what you want and then "start again tomorrow!" But that just led to the beginning of the end of losing weight and we were both really adamant that this was not going to happen this time so we made a decision at the start that we would not be having a "treat night".....at all.......Monday would be our weigh day but then it would be like any other day.......this is what I mean about it being our norm, everything is how we want it to be permanently and not just while we are losing weight!
This doesn't mean that we can't have a treat but every now and then instead of every week! This again was where I wanted and needed things to be different......my biggest downfall is ice cream, I can eat it any time, any where, any how......I love the stuff! I needed to be able to have it so every Monday I will have some ice cream.....the funny thing is that it doesn't really affect my weight loss......I am still losing weight so I don't see it being a problem! If I hit a plateau and am struggling to lose then I will cut back on it, or maybe not have it every week, but while I'm still losing, it's not a problem. Plus, I have so many rough times that I need something to help get me through them, now, whether that is just an excuse or not I don't care, while I'm still losing etc etc! 😜
So, no takeaway was step one of our new lifestyle, step two was going to be a big step. As part of my MS I struggle a lot with fatigue, especially in the afternoon but when I wake up I'm not in the frame of mind to have a main meal so we decided to try having our main meal of the day at lunchtime and then some fruit and a snack at teatime. That, along with no treat day, was going to be a good base to start with!
And you know what? It's working! 🎉🎈🎉🎈🎉
As of today 22/10/2016 Martin has lost 70lbs or 5 stone or kgs........he has nearly reached his goal, and I'm so proud of him! I have lost 56lbs or 4 stone or kgs and when I think about all the things I have against me, with all my medications etc, I think I've done a pretty good job too!
BUT I haven't finished yet, I've still got a lot to lose, but that's ok........I know we can do it, I know Martin will be by my side supporting me and this is the change we so desperately wanted and needed!
Just remember........Anything is possible.......especially if you have the will to make it happen and support around you! ☺️💋☺️
Love and hugs
Tales of Life with Multiple Sclerosis
In 2002 I got the earth shattering news that I could possibly have Multiple Sclerosis. In 2003 that news was confirmed. I was 29 years old. I wanted to start this blog to go over the last few years of dealing with this illness and look forward to the future as it happens. If I can give hope to just one person, that life isn't over when you get life changing news, then this will have been worthwhile!
Sunday, 30 October 2016
Saturday, 20 August 2016
Lidocaine Infusion to help neuropathic pain!
One of the hardest symptoms I have and the most difficult for me to manage is pain.......specifically neuropathic pain. I have had neuropathic pain since I first started to get my MS symptoms back in 2002.....14 years ago, wow that's scary!
Like all MS symptoms, not everyone has every symptom. I know a lot of people who don't experience any pain as a result of their MS......It all depends which areas the lesions are on your brain and spine.
Before I had my first MS symptoms and consequently got my diagnosis, I never really went to the doctor about anything. I'm not embarrassed to say that I was always a bit scared of doctors, especially GP's! I don't really know why but I know I didn't like going to see them if I could possibly help it and it's probably why, when my symptoms first started, I left it a few days before even going to my GP, I was sure that, if I ignored it it would just go away.....wouldn't it? Ummm no! ;-)
I am certainly not afraid of GP's, consultants, nurses, none of the medical profession now, in fact, I have been and continue to be looked after amazingly well! When you are dealing with a chronic illness or illnesses, you become the best expert of whatever condition or conditions you are dealing with. Martin and I have a wonderful relationship with our GP and my consultants across all my illnesses and my GP has said to me more than once that I probably know more about MS than she does now!
We have actually stayed with them all even though we've moved a little further away. They are all such an integral part of my support system and I couldn't bare leaving any of them at the moment! They have all been with me across all my diagnosis' and they all know me.....really well!
We are able to stay with our surgery, even though we now live out of the area, because they do allow it but each surgery is different. You must ask them first if it is ok....our surgery allows out of the area patients but you can't ask for a home visit. I haven't actually ever needed a home visit.....so far.....but if I did have any type of emergency I would just go to the nearest A&E!
Now, on to the Lidocaine infusion!
I have a great pain consultant who last year suggested to me to try something called a Lidocaine infusion. Now, my understanding of it is that it is what is used for giving anaesthetic and because of that it helps to deaden the pain......it doesn't get rid of it completely but I get about four to six weeks where the pain is taken down a couple of notches and I'll take that! He told me that he'd been getting good results with it and he thought it was worth a try.
Pain is a very difficult symptom to deal with, I remember when my symptoms first started and I had no idea what was going on, I used to think it was all in my head! It is a symptom that drives me crazy and over the years I have thought, a lot, about how best to describe it to help people understand what it is that I'm feeling. It is one of those symptoms that no one can see and so it all goes on what I am saying and I hate that......what I feel may be very different to how someone else feels it.....what if I'm making more of it than I should be?
Of course that is ridiculous though because whatever I am feeling, if it is affecting me then it matters. It's taken me many years to be able to think like this though and many hours of discussions with a Neuropsychologist.......he would be very proud of me now though!! 😜
Just to give you some idea of what my painful sensations are like, here are some examples of what they feel like to me.
I get a sensation in my toes that feels like when you've been out in the freezing cold and you go back inside and your toes start to warm up but as they do they get a burning sensation through them. Unfortunately I can get this sensation without even going outside! 🙁
I get a sensation in my lower back which feels like someone is stabbing me with lots of tiny pins or like someone has taken a small razor blade and is making lots of tiny cuts in my skin.........I also get this sensation in my feet and hands.
I also, very often, get a horrible sensation in my fingertips and they feel painfully numb. This always confuses me, how can something be painful if it is numb, surely if it's numb you can't feel it, but with neuropathic pain that's how it works.
So my pain consultant arranged for me to have my first infusion and I had it last year.
I was given a pain diary to keep a record of my symptoms to show how and if they varied over a three month period. I then sent it back to the pain management department and my consultant decides if it's been any benefit and whether it's worth having it again. I was blown away by the fact that according to my results, I had experienced about four to six weeks of a lesser amount of pain. It doesn't get rid of it and I still have bad days but on the whole, the infusion had definitely been worth it so I was booked in to have it again!
The second infusion was booked in for just before Christmas last year......I was actually delighted because it meant I would possibly have a bit of relief over Christmas.....and I did! Unfortunately as I was coming to the end of that infusion I came out in a bright red rash.....I was given a big dose of antihistamine and it went away so I was able to go home but my consultant was concerned that it had been an allergic reaction to the lidocaine. He was then unwilling to let me have any more infusions until I had been tested to see if I was allergic or not. Obviously all this took time but I had a challenge test done, which is where I was injected four times, once with just saline solution, the second was a Lidocaine mixture of 1 in 100, the third was 1 in 10 and the fourth was purely Lidocaine.......happily I am not allergic to Lidocaine!
I was actually fairly sure I wouldn't be because, after speaking to my MS nurse, I had found out that a rash, can be, a side effect of the new disease modifying drug I had started last year - Tecfidera! It is a strange rash, it's almost like a heat rash and it comes up on my left forearm, the upper part of my right arm and all across the top of my shoulders. It is prickly like a heat rash and can come up bright red too......but at least I know I am definitely not allergic to lidocaine!
Unfortunately, because of all that, I had missed my slot of having my third infusion because they wouldn't let me have it until they knew for definite that I wasn't allergic to it.......I totally understood why they had to do it and even though I had a proper explanation for the rash, they would not allow me to have another infusion until they knew for sure. But in the meantime my pain was escalating quite severely.
I had an appointment to go to the hospital, to the Day surgery unit, which is where they do the infusion so I put two and two together but came up with five because when I got there I was told I was having a pre assessment for having my collar button fitted in my ear......this is to help the vertigo I get from having Ménière's Disease! But that wasn't so much the problem, what really upset me was the fact that I was being told it would be September, at the earliest, before I would get this treatment....I was devastated!!
Now, as I have said, I generally do not go to my GP unless I really need some help.....or I'm really desperate.....at this stage.......I was really desperate! The idea of having to wait about four more months before having treatment that I knew was likely to help, I couldn't imagine how I was going to get through that wait so I went to my GP who was brilliant and she phoned the hospital straight away to try and speak to my pain consultant.......to my amazement she got right through to him! She explained that I was in a lot of distress and asked if there was any chance of getting the infusion done quicker but he explained to her that as this is a relatively new treatment he is only allocated two 2 hour slots a week, by the hospital, to administer the treatment, which means only two patients a week get it but because the treatment is becoming fairly successful, the more patients that have it, the longer the list gets for repeat treatments and that is why I am having to wait so long for my slot. He did say that he would try and look into it and see if he could get me in any sooner but in the meantime I just had to wait! My doctor did increase one of my pain meds, PreGabalin. I was on 150mg twice a day but the maximum dose is actually 300mg twice a day so I was able to increase that and I got to the dose that I am now on which is 250mg twice a day. It helped a small amount but ultimately what I needed was the infusion!
That phone call must have helped because a couple of weeks later I got an appointment through......I was going to have the infusion on 8th August. It was still about three weeks away but it was better than September!
It is so frustrating though because I knew there was a treatment that would lessen the pain I was in, so naturally, I just wanted to have that treatment as soon as possible but I was having to wait and it is so hard to explain how unbearable that waiting is. You have to live your life and get through each day because what other alternative is there but the pain just eats away at you. I am one of the lucky ones because I have Martin and he helps me through every day, every hour, every minute and without him I'm not sure that I could cope with it. It sounds like I am being a bit over dramatic.......I'm not, I'm just being honest.
Anyway, the 8th August finally came round and I have had the infusion and finally my pain has started to lessen slightly. It's not a miracle cure and it will only last for four to six weeks but I will take that over nothing at all! When I had my infusion, it was given to me by some nurses though rather than my consultant because they are setting up the nurses as an extra service to enable the treatment to get to the patients slightly quicker........It effectively means that the waiting will be down to eight weeks in between treatments rather than twelve weeks.......that was music to my ears.......I'll take that! 😋
Hugs to all
Monday, 1 August 2016
Stopping Tysabri and what happened next?! ;-)
I started on the DMD-Disease Modyfying Drug, Tysabri in 2010. It was a huge decision because having Tysabri infusions is not without its risks. But at that point in my life I wasn't actually on any of the other of the available DMD's. I had tried both Rebif and then Avonex, (both are known as part of the group of Beta Interferons) over a period of about 2 & 1/2 years but it got to the point, with both of them, that I didn't feel I was getting any benefit from being on them and having to inject myself and the side effects from that were just becoming too much of a problem. So I had a chat with my consultant and he agreed that I could stop them but then I wasn't on any type of DMD at all.
I had started to hear a bit about a new treatment called Tysabri but that it came with some pretty scary risks.......people had died while being on this treatment........this needed serious consideration. I knew people who were starting on it so I asked them how they made their decision to go on it. Of course everyone is different and everyone's reasoning is also very different. If I wanted to consider this Martin and I needed to talk to my consultant and get the real facts about it so that we could make a proper informed decision.
We took a couple of weeks to discuss it before coming to a decision......we went backwards and forwards on it but we decided that I would go on it and just keep a close eye on things! I had my first infusion on 30th June 2010. It is a four weekly infusion and I had to go to the hospital in Plymouth to have the treatment because that was the only hospital, locally, that was set up to administer it. At that point there were less than ten of us having this drug so it was in the early stages of sorting out how to and where it could be administered.
Not only was I nervous about starting the treatment but it was an infusion which meant I needed to be cannulated and because of the way my skin is and the altered sensations I get, it is incredibly painful for me to have any needle put in me! It's strange because I am not afraid of needles as such, I don't get worried about the needle itself, it is the pain that I feel when the needle goes in, it's like a red hot poker being stabbed into my skin and it hurts......a lot!
So I had the first couple of infusions and the infusion itself went ok but the poor nurses that had to put the cannula in always had an absolute nightmare. There was one nurse who was particularly good at finding veins and so whenever there was anyone who presented quite a challenge, if she was on duty then she would be asked to help. I was already friends with this nurse going way back to when I had my first investigations done in 2002 (she held my hand and helped me through my first ever Lumbar Puncture!) and so if she was on duty she would have a go but I was always a challenge and not in a good way! I wasn't happy because my veins were getting harder to deal with and I would spend the four weeks in between each treatment worrying about the next time and would I be cannulated ok? I was seriously beginning to fear that if we couldn't find another solution I would have to give up the treatment.
I went down to the hospital the next time and I was talking to a nurse I hadn't seen before. I was explaining everything to her and her first reaction was "why haven't you got a portacath in?"
"Excuse me.......a what?"
She went on to explain that it is a small port that is put in your chest and attached to a vein in your neck. When you go for an infusion, the nurse feels for the port, the needle goes straight into that port and the infusion is hooked up. We had never heard of it but it sounded ideal! I emailed my consultant and asked him about it, he told me some more information and said he could get it organised if that's what I wanted. We decided that it couldn't be any worse than what we were doing anyway so it was arranged and I had the portacath also known as a Tivad, put in my chest. It was put in just above my right breast and it was attached to the vein in my neck.......it was so clever and meant that my treatment on Tysabri could continue!
I actually stayed on Tysabri for just over four years. I had my final infusion on 28th August 2014. I tolerated it fairly well, I would have the infusion generally on a Thursday and I knew that the weekend was out, I wouldn't plan anything because I would always be incredibly tired and generally feel pretty rough but those three or four days were my only downside.
My biggest problem was that I didn't feel any benefit by being on it. I knew people who knew they were coming to the end of their four weeks because they could feel a deterioration in their MS. They also felt the pick up after they had had the infusion but I never felt either of those things and that started to really bother me.
It's true to say that I didn't have any major relapses (flare ups), I did have minor ones........they didn't feel minor at the time but there would never be anything show up on an MRI etc.......it's one area I always feel is a bit tricky. I know how I feel on a day to day basis so, in turn, I also know when things feel different. But those differences don't necessarily show up on scans which makes it difficult to say what is a relapse and what isn't? I always understood the definition of a relapse was an increase in symptoms or new symptoms that last for or longer than 24 hours. The trouble that I have is that I have several horrible symptoms on a daily basis so I then have to weigh up what is a new symptom or have the symptoms that I live with on a daily basis got any worse?
It's never straight forward with MS. I will never forget in the first few years of having MS I met a doctor who said to me that the only predictable thing about MS is it's unpredictability and I've never heard a truer word spoken!!
So I had my last Tysabri infusion on 28th August 2014. We took the decision for me to stop it because I just didn't feel like it was helping me. I had one weekend in four where I had to stay home because I felt quite rough, I wasn't feeling the benefits or downsides that I knew other people were and I know you can't compare, but you do use the information to assess where you are, so I just wasn't convinced it was the right treatment for me. We had a chat to my consultant about it and it was decided that I would stop for six months and we would reassess things then......unless anything happened before that of course!
It felt a little bit strange not being on any kind of DMD because I have been on something for so long but it was ok!
I was fine for the first seven months but in March last year (03/2015) I lost a lot of the power in my left leg, my whole left side was very weak and my left hand wasn't working properly either. It didn't happen overnight, it came on over a couple of weeks which messed with my head a little bit. When something happens dramatically you know that there's been a change but when it slowly deteriorates over days and weeks that's when I start thinking "is it all in my head?!" My altered sensations were worse too, I had horrible stabbing pains in my lower back, which I get very regularly anyway but these were somehow worse! There was definitely a big problem with my left leg, it wouldn't move on it's own at all, I had to pick it up and move it. I couldn't walk without feeling really unsafe so I had to use my wheelchair whenever we went out and our house became a very unsafe place for me to live in. Our bedroom and bathroom were both upstairs but I didn't want to just stay up there, I wanted to be downstairs, so Martin barely left my side because when he did, I'd fall over.......with monotonous regularity! 🙁
It turned out that I was having a relapse as there were new lesions that had shown up on my MRI scan.
I was given a course of steroids, oral ones, which are awful to take! They taste awful and leave a really horrid after taste........but then we are given a massive dose of steroids whether it's given by IV or orally. And, for me, historically, they have never really worked but in the lack of anything else, steroids was the only thing left for me to take and I haven't had them for years so we thought it was worth a try! I think they might have helped a bit this time but it's difficult to say because I also started a new treatment around that time too.
My consultant wasn't happy that I wasn't on any type of DMD, he thought that being on something, even if it wasn't as powerful as Tysabri, was worth trying to keep any MS deterioration at bay. So I was introduced to a new drug called Tecfidera, also known as BG-12. Not been around long and to give us some idea of how strong it is we were told that it's stronger than the original Beta Interferons like Rebif and Avonex but it's not as strong as Tysabri! We decided that it was worth a try and to my absolute delight, it was explained that it's a capsule taken twice a day and it's delivered directly to me, so I don't even have to leave the house, at all, to have my treatment.........this I could cope with! 😉
It's also worth remembering that all this was happening at the same time that we were offered the wheelchair accessible flat that we accepted and moved in to! It was amazing, I couldn't use a wheelchair in the house we lived in, there just wasn't the room........hence the reason I kept having several nasty falls. So to move in to a flat that's been build so that someone in a wheelchair can live comfortably, with everything totally accessible for them, was a dream come true........and having lived here for just over twelve months, it was the best decision we ever made.........being able to go to the bathroom, on my own, makes a huge difference to me and it's given me back a small amount of independence again.
It's the little things that makes the biggest differences, it really is!
Stay hydrated in this heat over the summer.......I'm looking forward to the cool of winter already lol!!
Tuesday, 12 July 2016
Lemtrada - can anyone help?
I am writing this post on behalf of a friend. It has been suggested to her about going on to Lemtrada infusions but she doesn't know much about it. She reached out to me to see if I knew anyone who was on this treatment so that she could find out about the reality of being on it rather than just reading about it. Unfortunately I don't know anyone who has started this treatment but I told her that I would do a quick blog post to see if I could get any information for her. We all know what it's like to face the daunting task of deciding whether a treatment is right for you or not, I remember when it was suggested to me about starting Tysabri infusions, and these aren't your every day drugs without any risks, we took our time and tried to find out all we could about it.....so it's over to you, can anyone help a fellow MSer?!
Thanks, in advance!
Saturday, 2 July 2016
Multiple Chronic Illnesses and the problems they present!
When you are diagnosed with a chronic illness, that doesn't stop you being diagnosed with another one or two totally different ones!
For example, I have MS but I also have an under active Thyroid and Meniere's Disease both of which are chronic diseases in their own right!
I have met lots of people who live their lives with multiple health conditions that impact heavily on their lives and it can sometimes be confusing which symptoms are from which illness!
I was diagnosed with Multiple Sclerosis first and that was in 2002/2003 but a couple of years after that I was diagnosed with an under active Thyroid. I had assumed that the fatigue I felt from the MS had just got worse but a blood test showed that my thyroid was playing up! It was a weird feeling, my body was really doing the dirty on me! So I was put on lifelong medication for that.......it was quite amusing because I was on a few drugs already for the MS but I had to pay for all the prescriptions for that. But then I was diagnosed with Hypothyroidism or an under active thyroid, which means I actually HAVE to be on medication for the rest of my life and so therefore, from then on, all my prescriptions were free! The medication keeps my thyroid under control and so I don't really get any side effects......I have a yearly blood test which lets them see that I'm on the correct dose of Levothyroxine so that keeps it all in check........that's great because the symptoms from my MS were, and still are, proving harder to manage so I don't really think or worry about my Thyroid too much!
It was a similar situation in 2013/2014 when I started getting some more exacerbated and new symptoms. I started having problems with the hearing in my left ear and then I started getting vertigo and not the afraid of heights type!
The vertigo I got was awful, it was so violent and disabling and it scared the life out of me. I would feel as though I had just been punched in the side of my head and everything would turn upside down and start spinning. I would have to close my eyes because I just couldn't focus on anything, I would be dripping in sweat, I would certainly feel sick and in the early days, most of the time I was sick.....I would have a bowl down on my side of the bed "just in case!" The nausea and vomiting got so bad at one stage that it would cause me to lose control of my bladder. I lost confidence about leaving the house because I didn't have any warning signs that the vertigo was going to happen.....I still don't and so for a while it had a really negative impact on my life, it still does actually because I can't drive, in fact I haven't driven for over two and a half years. If I had some kind of warning that it was going to happen it wouldn't be so bad because I could prepare myself but no that's too easy for my body! 😉
Vertigo is a symptom that is also associated with MS so when I first started having the episodes we all wondered if it was an MS relapse. It was also considered whether it could be a type of vertigo called Benign Paroxysmal Positional Vertigo (BPPV) this is where certain head movements will trigger vertigo. There is a test that the doctors can do with the head to test for that, which they did and decided that I didn't have that type!
I had been referred to the ENT department - Ears, Nose and Throat department because of the hearing difficulty I was having in my left ear. It turns out that I only have about 30% percent hearing left in that ear and I also have horrible tinnitus in it too. The tinnitus is horrible because with me it is constant. It sounds to me like I have rushing water going past that ear but on the inside......the volume of it will occasionally change but at the moment it is set to loud and that just makes it harder to hear too! I have been told that the hearing I have lost in my left ear is permanently lost now so I have a hearing aid to help me.
I was then referred to an ENT consultant to try and sort out the vertigo. It took a while to come to any decisions but eventually after some tests and time and the combination of the symptoms I had, it was decided that I did actually have Ménière's disease. The hope is that the vertigo will burn itself out eventually and I will admit that it isn't as bad or as frequent as when I first had it but I do still get episodes a few days of every month which is incredibly frustrating. I still don't get any warning either so driving is still off the cards.....for now but I'm determined to get it back......one day! 😉
So I have a list of symptoms from the three illnesses that I have, that takes a lot of energy and effort to manage on a daily basis and those symptoms differ every day. I do try to not let it get me down, which can be easier said than done, but I have the support of my amazing husband, who keeps me positive and cares for me each and every day, my Dad is great support to both myself and Martin and I have an army of wonderful friends who keep checking up on me and it's no exaggeration to say how much my spirit gets lifted by a message of support or someone popping in for coffee!
It's those little things that keeps me going, keeps me smiling and keeps me positive, so thank you! 😚😋💖😋😚
Sunday, 26 June 2016
Pain, pain go away, come again.........actually never!
Having a chronic illness means that your life can be very unpredictable.
It is one of the most difficult things to deal with because you never know, from one day to the next, how your condition is going to affect you and by default, affect those around you. It is also one of the hardest things for people who don't have a condition or aren't around someone who does, to understand.
I will never forget something a doctor said to me very early on in my diagnosis. He said that "the most predictable thing about MS is it's unpredictability!" He wasn't wrong about that!
I have to admit that one of the most frustrating things, for me, about having chronic illnesses is when it stops me from doing something. If I have planned something or I'm meeting up with friends, going to the cinema, anything that involves me getting out and living my life but I then have to cancel it or change my plans, that's when I get the most frustrated........I guess it's when I have no control over the situation.....I'm not sure what that says about me though!
I'm having some issues like that at the moment and it's driving me mad!
Over the past couple of weeks my pain levels have increased again to the point that I am only just being able to function. I had been holding out for an appointment that I was booked in for at the hospital on 14th June. I had thought, wrongly as it turns out, that I was having my Lidocaine infusion. It is an infusion I have that helps with my pain.......I've had two of them so far, I believe you can have them every three to four months, but when I had the last one, just before Christmas, I was just coming to the end of the infusion when I came up in a rash. It was almost like a heat rash, quite blotchy but bright red and it was on my left forearm, my right upper arm and going all across the top of my back. My consultant was concerned that I was allergic to the Lidocaine and decided that he was going to refer me to a colleague of his to get a skin prick test done to check that I didn't have an allergy and that I was safe to have the infusion in the future.
I actually ended up having a challenge test done which meant I was injected four times (my favourite!!) The first injection I had was just ordinary saline solution, the second one was 1 in 100 of Lidocaine, the third was 1 in 10 and the fourth was 100% Lidocaine.
It turns out I wasn't allergic to it, which was great from my point of view, because I have found these infusions do make a difference. They don't get rid of the pain but it does dampen it down for about 6 weeks which, as far as I'm concerned, means it's worth doing! I will just point out that we are fairly certain that my rash is a side effect of the new DMD - Disease Modifying Drug, I started last year called Tecfidera or BG-12.
Anyway I had an appointment at the hospital and I, by process of elimination, had thought I was having my infusion, as I was behind in my treatment because of having the challenge test done. Unfortunately that appointment wasn't for my infusion at all, it was the pre assessment for a procedure I have had to have to put another collar button in my left ear!
I asked if they could tell me when my infusion would be, because I'm getting quite desperate for it now, and after making some enquiries the reply was "probably not before September!" To say I was disappointed would be a rather large understatement!
I have to say that the nurses at the hospital were amazing! Everything became really overwhelming and I couldn't see how I was going to get through until September with this amount of pain. It is such a hard symptom to deal with because no one can see it so everything has to go on what I say and I hate that! I am always questioning myself about whether it is as bad as I think it is or would someone else be handling it better than I am? I know I am being silly because ultimately whatever I feel is what I am experiencing......if it hurts me then it hurts!
I have always, right from when my symptoms first started, tried to put into words what my symptoms feel like. Martin has always wanted to know so it is something I have just naturally done. For example my feet feel as though someone as taken the skin off, shrunken it but then tried to put it back on my foot and they've had to stretch it all over. Or my hands feel as though someone has slashed them with a razor! My lower back feels as though someone has got a handful of pins that they are constantly stabbing into it and it burns. I could go on..........but you get the idea!
The nurse I was seeing for my pre assessment was great, she could see how upset I was when I explained what had happened and how long I am expected to wait for my infusion. She got Martin for me, made us a cup of tea and rang my doctors surgery to see when my GP was next in! She gave me so much time and never once did she try to rush us or get us out which we really appreciated!
I saw my GP a week ago and I have to say that here we have another example of wonderful care. We have had the same GP for around 16 years now but more importantly she has seen us through my diagnosis of MS, Menieres Disease and my under active thyroid plus she was like a dog with a bone when Martin was poorly, she never once gave up on him! We have a great relationship with her as she knows us both so very well and she knows that if I'm making a fuss it's for a reason! So when I told her what had happened about my Lidocaine infusion she didn't hesitate and she got straight on the phone to my pain consultant! He is going to see what he can do but he explained to her that the powers that be at the hospital only allow him two, two hour slots a week, to perform this treatment (that's the amount of time you need to do one treatment with recovery) and as it's working for people, the more they want repeat treatments, so, of course, the list is getting longer and therefore the wait is getting longer! I completely understand this, and I know this isn't my consultants fault, but it also doesn't get me the infusion I need and the likelihood is that I will have to wait until September for it. My GP has increased one of my other medications but, after a week, it hasn't really touched my pain which just leaves me wondering what else will??
Keep cool in the warm weather! ;-)
Sunday, 12 June 2016
School Reunion and tackling being Disabled! 2
This post was actually published on 04/06/16 but I had some editing problems which is why it's been published again.....sorry lol!!
So last Saturday I attended a school reunion at the secondary school that I went to from the ages of 11 to 16 years old.......or 18 if you stayed on in the sixth form!
So last Saturday I attended a school reunion at the secondary school that I went to from the ages of 11 to 16 years old.......or 18 if you stayed on in the sixth form!
I attended Torquay Grammar School for Girls from the years 1984 to 1989. I didn't stay on in the sixth form, I left and went to the local collage to do a BTEC National Diploma in Performing Arts.
I went to the Girls Grammar school because I passed my 11+ exam, it was also the school that my mum had gone to so I was quite proud to follow in her footsteps.....the problem was that I wasn't particularly academic and I had my heart set on going to London, to go to a theatre school and train in musical theatre. The trouble was the grammar school didn't really concentrate on many of the creative elements. There was no drama or dance....there was a choir & also an orchestra, except I couldn't play an instrument! I don't feel that I was encouraged in any of the areas that I was actually good at!
I had wanted to be on stage for as long as I could remember......I was 3 years old when I started dancing, I eventually took lessons and exams in ballet, modern/jazz, tap, national (National dances from around the world) and I would eat, sleep and breathe anything to do with musical theatre!
It's safe to say that I was an active child! In fact I carried on dancing up until I was at least 21. I had fulfilled my dream and gone to a stage school in London doing a three year musical theatre diploma.
When I finished college I got a few different jobs and I even got my Equity card......Equity is a union for people within the theatre but it's not something you can just sign up to, you have to earn it by working in the profession.......I was very proud to have achieved that!
I actually met Martin while doing one of the jobs and we moved to London after we'd finished it. We had planned to carry on auditioning for things so while we were doing that, we got jobs ushering at a West End theatre. We ended up at the Shaftesbury Theatre and after a little while working there I was asked to interview for one of the deputy manager jobs.....I got the job and spent the next couple of years as Deputy Duty Manager at the Shaftesbury Theatre, another achievement that I'm very proud of!
We left London after a few years and ended up back in Devon.....after we'd done a bit of travelling around Europe......We got an Inter-rail ticket and with a tent & a large back pack each, we travelled to France, Belgium, Netherlands, Germany, Austria, Switzerland, Southern France and Italy! 😯😋😯 I will just say that anyone thinking of travelling or taking a gap year, I would really encourage it. Looking back on our lives, I am so glad that we did it because I would never be able to do something like that now. Take your chances when you get them!
It had never been in my plan to move back to Devon, it just kind of happened and at the time I wasn't sure how I felt about it but as time went on we settled down here, we found somewhere to live and we both got jobs, in fact we managed to buy our own house but we were in that house for less than twelve months when my first symptoms of MS started. It was a scary time because I wasn't able to work for a while, we'd just got a mortgage and the future seemed really uncertain.
But as always things have a habit of working out and fourteen years on we are in our flat, our "forever home" and we're all very happy here!
Now back to the reunion, it had been in the planning for some time and I had been told about it last year sometime. I was fairly adamant to begin with that I wasn't going to go. I had shut that door a long time ago and was sure I didn't want to open it! Apart from not wanting to go to the actual school again, I wasn't sure that I wanted people to see me as I am now, after all I'm not the active girl that I was at school.
The beauty of Facebook is that it connects people, it brings people together, whether they are going through similar things or whether they knew each other in the past, it connects and reconnects!
I was able to reconnect with a few of my old friends from school, one of which was helping to organise this reunion. She knew how terrified I was of being a part of it. I guess a part of it was that I wasn't the girl they'd remember (but then who was?) but also the way society makes us feel about how we are or what we have done made me scared to show myself.
I'm slightly ashamed to say that I felt embarrassed.....embarrassed about being disabled and yet now, as I write this, I realise just how ridiculous that sounds.......I just knew that I didn't want people to feel sorry for me.......and they didn't!
In the end I was persuaded to go and I am so so happy that I was!
I started the afternoon off on my crutches but quite soon had to get my wheelchair, we were going on a tour of the school and I knew I wouldn't be able to manage walking that far. While I was sat talking to a friend, Martin had taken my crutches back to the car and he'd brought my wheelchair up to where I was sitting. I don't know why but just that change from using crutches to getting in my chair made me feel really emotional. I was so conscious about getting in and being in my chair and about being different, that it almost took my breath away. But that was all me, no one else made anything of it! I don't like having to use my chair even though I know it is there to help me but having said that, I am much better at using it than when I first got it lol!!! Not one person made anything of my situation and nobody made me feel awkward at all throughout the day....I'm hoping I didn't make any of them feel awkward either!
We had a fantastic day, catching up with old friends, reconnecting and making plans to see each other again in the future.
A very special day, let's not leave it another 25 years eh?!?! 😜
I just want to add that it was great to go and look around the school again, after all these years! It was another thing that I'd felt fairly adamant about, I didn't have great memories of it and so why would I want to go and see it again? But over the last 25 years, I am pleased to say that things have changed! The one thing that I will take away from it was that it now feels like a proper school. There were pictures, the pupils art work and school projects all over the walls of the corridors. There has been extensive development and new buildings, a sports hall, gym etc. It's fantastic and a school to be proud of........not like 25 years ago! 😋
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