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! ;-)

XxXxX 

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! 

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?!?! 😜

XxXxX

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! 😋  

Finding the right exercise for you!

All through my childhood and into my early adulthood I had always been very active. 

I started going to dancing lessons at the age of three and I was hooked from as early as I can remember.....and I wanted to do it all. I not only went to ballet classes but I did modern/jazz and tap as well as learning national dances from around the world. I was down at my dance studio most evenings as well as the weekends, then I heard about auditions for the local pantomime and I wanted to be involved in that too! I remember I was eight years old and I had auditioned for the junior chorus but I didn't get chosen for that.......however the director asked myself and another girl if we would consider sharing one of the main roles, I was so excited......the pantomime was Goldilocks and the Three bears and I was going to be playing Baby Bear!! 

Paignton Pantomime 1981/82 Goldilocks and the Three Bears! 

That was to be the first of many, I enjoyed it so much that I was involved with Paignton Pantomime for the next nine years too, I went from playing Baby Bear to the junior chorus, then on to the senior chorus and then on to playing principal roles and I have to say it was a wonderful way to get experience plus it was great fun and I made some lifelong friends along the way! 

Junior Chorus! 

Senior Chorus! 

Senior Chorus! 

From dancing my way in to my late teens, when I was eighteen I moved to London and went to a dance college where I did a musical theatre diploma......this involved, amongst other things, dancing every day! 

Keeping active was just a way of life for me! 

Martin and I moved back to Devon in 1999 and once we were settled, Martin decided that he would like to get involved with local amateur groups so that he could be in plays as well as musicals. I would say that for him acting is his first love although he has got a singing voice to die for so I love it when he is involved in musicals! We actually met when we were working together, professionally. We were part of the entertainment crew on one of the cross channel ferrys......it was a huge Stena ship called "Stena Normandy" which carried around 2100 passengers! 

Martin got involved locally first, because he was joining the society's that I had been a part of all those years ago and I wanted him to be known as Martin Southard as opposed to "Amelia's husband". I did go back and was a part of some of the shows as well, up until 2002. 

Performing and rehearsing were not my only forms of exercise though, I also loved swimming. I had been a strong swimmer for as long as I can remember and I know throughout 2001 I used to go two or three times a week, in the mornings, before I went to work.......it was a great way to wake up lol! 😋

When I was diagnosed with MS, my mind was all over the place and, to be honest, my diet and fitness were at the bottom of a long list of things that I needed to think about........that's when my weight started increasing. When you go from being someone who was so active, to not being able to just walk in a straight line without falling over, your world kind of falls apart. 

I was so busy worrying about not being able to work, to trying to go back to work and it failing, miserably, that I wasn't thinking about looking after myself. 

I had a big relapse in 2003, which is when I was officially diagnosed with MS. It affected my legs very badly and I've been on crutches ever since. I was referred to see a Physio and as we talked, I told her about my love of swimming but that I hadn't tried it since my diagnosis. She offered to take me, so I went......or at least I tried to go swimming but I couldn't just get in and swim and that completely threw me, so after that I didn't swim again for around eight years! 

We have a friend, actually we are friends with the whole family and they have a swimming pool. While it was being built, they said to us that, if it would help, they would be happy for us to go and use the pool. I was pretty nervous about it at first but I wanted to give it a try to see if I could rekindle my love for swimming again. The great advantage of going to their pool was that there was no one else there when I went so it was the perfect situation for me to see what I could or couldn't do and not have anyone watching me! 

It was a slow start and I couldn't just get in and swim but I could get in and not need my crutches or wheelchair, in fact, I could walk around in the pool and that in itself was me working my body without any effort! I built up a bit of a routine of different exercises that, because it was weightless, were easier for me to do in the pool rather than out of it......although I always paid for it when I got out of the pool......and that always seemed to surprise me.......it still does......ouch!! 😜

Once I realised that I could swim......or my version of swimming........I started going once a week because I was comfortable with what I could do in the pool. I had figured out how to do a stroke that would allow me to swim, in such a way, that would cause me the least amount of pain.....I would do breaststroke arms but my legs would lock straight out behind me. It is something that is so hard to explain to anyone, without it sounding like I'm whinging, but one of my worst symptoms is neuropathic pain & altered sensations over most of my body so going in the pool, while it is a great form of exercise, it still causes me a lot of pain. I don't necessarily feel it while I'm in the pool but it gets its revenge when I get out. I struggle because swimming physically hurts but the neuropathic pain is, for me, a lot worse.....my skin will feel very prickly and it starts buzzing all over, as though someone has plugged me into an electricity socket.......and that really is "Ouch!" 

I know, deep down, that going swimming is helping me. It is keeping me moving, even if it is still very slow

 and yes, it causes me pain but it also gives me a lot of pleasure. A psychologist I was seeing explained it to me like this, it is opportunity cost. I have the opportunity to go swimming but I also know that it's going to hurt so which is more important to me, which, outweighs the other and for me, the pleasure and mental satisfaction I get while I'm there is more important to me than the pain I feel. Now, don't get me wrong, I'm shattered afterwards and I'm grumpy because I'm in pain but there is a reason for it and that makes a difference! 

In 2012 I decided that I was in a place where I knew what I could do in the pool now. I was happy that I was able to do something and I was enjoying being in the water.......so now I needed a challenge. I was talking to my best friend one day and I mentioned that I would really like to do a sponsored swim.....I needed to have something to work towards and a sponsored swim might be a mad enough idea for me to do. She said that it was a great idea and that she would really like to do it too....we could train together and help each other with it. We discussed various ideas of how we would do it and she had heard a saying that was "Walk a mile in my shoes" and that said everything about what we were doing........I wanted to raise money for MS and Joe would do it for The British Heart Foundation. We worked out how far a mile would be in the pool and it turned out it would be 120 lengths, so we would do 60 lengths or half a mile each! We laughed......a lot.......60 lengths.....really.......who's stupid idea was this?!?! 

I knew I wouldn't be able to swim 60 lengths without stopping, that was asking for failure before we'd even started. We came up with a plan, we would do the lengths in a kind of relay, one of us would start by doing six lengths, when they had done those they would rest while the other person does six lengths and we would each do this ten times......it sounded so easy! 😜 

Straight away we decided that we wouldn't have a time scale, we didn't want any unnecessary pressure. We would just train until we were nearly there and then book a date and get some sponsorship! This was exactly what we did.....we completed the swim and between us, raised around £500 which was very satisfying! 

It's been a bit hit and miss over the past few years because of my health but I have managed to go fairly regularly this year, so far and I'm thinking that I'd like another challenge over the coming months so watch this space!! 😜 

XxXxX