Hasta La Vista Arnie

It’s not all that long ago that Arnie (my RebiSmart injecting device) came into my life. Now only a month and a half on I feel that our time is coming to an end. We may have a month or two left but I wouldn’t have thought much longer. It saddens me because Arnie has slotted into my life so well. He doesn’t cause me too many headaches (literally) and he comes in gorgeous teal packaging – one of my favourite colours. I find myself saying that classic line – “It’s not you, it’s me”…

It turns out that really is the case. Although I’ve had no problems at all with Rebif or injecting I went for an MRI with dye the week after I started it and now the results are in. The results aren’t really a big surprise to be honest, I knew the scan was bound to show a new lesion because I had a relapse the end of May 2013, a couple of months after my previous MRI. It wasn’t a big relapse compared with the one I’d had in April, in fact it took me a while to realise that’s what it was in comparison – I just put it down to sun burn. So the question was always going to be ‘what will the contrasting dye show up?’.

I had an appointment with my MS nurse last Thursday, it was meant to be just a chat about how the injections were going and blood tests but it turned out that wasn’t the case. I hadn’t had the results of my MRI – I was still waiting for the letter from my Consultant. Still, when my nurse asked how I was and said “we’ve got lots to talk about” I didn’t click. I thought he just had lots of questions to ask me or he was insinuating that I talk a lot! So after I wittered on about how great I’d been feeling and shown him a faint red post injection mark on my arm I felt noticed he was staring at me and nodding slowly as if to say “…and?”. I wracked my brain for what he might be expecting and then it occurs to me I still haven’t had my MRI results (I’d kind of forgotten about them – weird?). “Oh, you haven’t? I assumed you had got the letter” (ironically it arrived the morning after). “Nooooooo” I reply and from the slightly awkward look and shuffling of papers I know what’s coming.

As expected there was an additional lesion but also one that enhances with contrast meaning my MS is still active. On one hand I was surprised because I have been feeling particularly good since Christmas. On the other hand, prior to that I was convinced it would show that I was active so it wasn’t really surprising. Plus, I know that you don’t have to be having symptoms or relapses to have an active lesion. So we had a chat about Tysabri again and the fact that I’m negative for the JC virus, the how’s and the when’s and the percentages. I’m told that a letter will be winging its way to me with the date of an appointment with my Consultant to discuss it further and that I don’t have to make a decision there and then. In my head I’ve already made the decision, actually I’d made it over three months ago depending on my blood test and MRI.

While waiting for my blood test my nurse brings me a copy of the letters I hadn’t yet received. I ask him what I should do once I’ve made my decision and he tells me nothing until I’ve seen my Consultant again, just keep taking Rebif. I tell him that’s not a problem, it’s just I know what my decision is. “I thought you might” he tells me with a smirk. “It’s all about the numbers isn’t it?” I tell him.

It really isn’t Arnie’s fault, only now I’m eligible for the best available treatment for reducing relapses. Whilst I don’t want to have signs of active MS I do want to be able to access the best possible medication so there’s only one thing for it – it’s hasta la vista Arnie.

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Photograph used courtesy of Georges Biard via Wikipedia

Have I Got The Job!?

I’ve developed an injection routine pretty quickly since starting Rebif. I’ve chosen Sundays, Tuesdays & Thursdays rather than the normal Monday, Wednesday and Friday that was suggested as I thought I’m more likely to ‘do stuff’ on Friday and Saturday nights. Of course since then I’ve realised I’ve got tickets to gigs two weeks running on a Thursday – typical! I’ve worked out the times that work best for me and my post injection fuzzy head. My Sunday night injection is just before eight o’clock and then Tuesdays and Thursdays are between eight and nine o’clock – except when I have a Thursday night gig!.

I always have a shower first so I feel nice and clean and being relaxed probably helps. I keep my RebiSmart, needles, bin and diary in the spare bedroom away from the cats – the last think I want is my devise getting clogged up with Indiana’s hair or Amity batting needle capsules about the landing. With music playing in the background – this week it’s Of Monsters and Men – I lay everything out on the bed ready, switch Arnie (the name I’ve given my RebiSmart) on and go through the process of injecting.

Some nights, normally when I realise I’m injecting in an area that hurt the last time my inner teenager comes out. Just for a minute or two and in my head only I start to pout – but I don’t want too, it’s going to hurt, humph, do I have too? Stomp. Of course I could just inject in a different area but I have decided on an order now; left leg, left stomach, left buttock, left arm, right arm, right stomach, right buttock, right leg – I like that it’s circular. I tend to think of myself as being organised when it comes to these things or as ‘the husband’ described me to my nurse – obsessive. So I refuse to stray from my order unless I really have to and my inner teenager isn’t a reason – she slams the door on her way out and little miss positive returns. Inevitably the injection (left arm) was fine on Tuesday. In fact it scored a 4 in my diary for least painful, last time it was a 1 for most painful – a cm or two lower makes all the difference it seems.

Injection done, cap replaced, I press the needle release button, click the needle cap off, check the needle is removed and drop it in my needle bin. It’s all done and dusted in just a minute or two. Normally at this point I switch Arnie off but Tuesday night was special, on Tuesday something different happened. Arnie showed me a picture of my capsule on the screen – it had turned red. Arnie told me that I was to remove the capsule, that my Titration period was over and that I should insert a new capsule (stored in my fridge next to a bottle of skimmed milk, a bag of rocket and a bar of dark chocolate – not sure what that says about me!?). I suddenly felt elated, I called out to ‘the husband’ who was tinkering on the computer next door to come see! I felt as if I’d passed some sort of test or like it was a job and I had just passed my probation period!

The four weeks have flown buy and already it feels like the norm when my alarm plays Monster by The Automatic (this amuses me – my MS is my little MonSter). People have asked me how long I’m going to inject for and the answer to that of course is ‘how long is a piece of string?’ – if it works for me then I see no reason to stop until a better option comes along. The same people tend to also ask me if I can feel the difference and I have to explain that isn’t how it works – it’s about reducing relapses, not curing me of my tingly feet. Titration period done, I start the maximum dosage tonight – but only after I’ve enjoyed an evening with Frank Turner and the Sleeping Souls.

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The Trevinator Strikes Again

Last week I went for an MRI with dye. This was partly because my MS had been pretty active between October 2012 and May 2013 having had three relapses. At least two of these were considered by my Consultant to be ‘disabling’ as I’m still feeling some impact from them. This means that Tysabri, a second line treatment may be an option for me. I’ve already had the blood test to check for the JC virus (has the potential to cause some nasty side effects if your on Tysabri) and the nice people in Denmark who my blood was sent to have advised that I’m negative. This makes the decision much easier should it be an option and that all depends on the results of last weeks MRI.

I’m good with MRI’s – I have no issues with claustrophobia or the noise. I’m one of those annoying people who has the ability to sleep through pretty much all of the process despite the fact it sounds like people are throwing hammers at the tube and drilling next to my head. The first five minutes are always the worst when all of a sudden my mouth goes dry and I have a desperate urge to cough. The strain of not moving normally causes my eyes to water and I’m sure the nurse/radiologist then thinks I am crying as there always seems to be a lot of arm rubbing and ‘didn’t you do well!’ while all I can think is ‘did i?’ as I’ve slept through most of the process.

Last week was different for me as I’d never had a scan with dye before. At what should have been half way through the process I was taken out of the scanner so that I could have dye injected into a vein in my inner arm. Still in the padded contraption that stops you being able to move your head I patiently waited the five minutes or so before they could commence the second set of scans. Once back inside I’m told it will take around twenty minutes and I immediately go back to sleep. It isn’t a deep sleep of course, I’m always vaguely aware of a voice telling me when the next scan is being performed. This time the machine seems quieter though and at the end of the first scan the machine is silent as is the voice from the control room. This doesn’t bother me, I continue to doze. Eventually a voice advises me that there is a problem with the machine and they are going to have to remove me while it is restarted.

Eventually the MRI is fixed, ‘the husband’ who is patiently waiting outside for me has been informed that there is a problem and calculates that it was probably down for around twenty minutes. I’m not sure to be honest as I slept through this, – it’s not as if you can read a magazine easily with your head encased in weird pads! I tell the nurse not to worry who apologises profusely when were finally done. I tell her that something similar happened at my last MRI in a different hospital. “It’s you” she says “you’re a jinx!”, we laugh, ‘the husband’ agrees and line of people waiting scowl in my direction.

At my previous MRI I hadn’t even got into the machine before things went wrong. I was on the bed, earplugs in and head encased about to head into the big metal tube when the lights dim to a low level, the whirring of machinery stops and all is silent except for the panicky voice of the nurse. IT people are called and I return to the waiting area grateful that I had worn my planned MRI outfit (no metal) and am not sat in a hospital gown with my jeans neatly folded on my lap like the man next to me. Fifteen minutes later a switch has been thrown and we’re back up and running – apparently fuses are as easy to blow with these things as they are by having too many of your kitchen appliances on at once. But what if it isn’t an IT problem or a blown fuse? Remember when I said I used to think the tingling in my hand could be the beginnings of a super power forming (I Am Lightning Girl) ? What if I am in fact something else entirely? An evil mastermind without the mastermind bit or perhaps a human/robot sent back from the future. I could be the Trevinator – Destroyer of MRIs…

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Image used courtesy of WolfWings via Wikipedia

T Is For….. Terminator?

Last Thursday, supervised by my MS Specialist Nurse I injected myself with a Disease Modifying Drug for the first time. Hopefully, fingers crossed, touch wood and all those other superstitions I wouldn’t normally believe in, it will alter the course of my MS. If all goes well it will reduce the number of relapses I have by 33.33333333333333 (okay that’s enough of that!) percent, lessen the impact of any relapses and thus lessen any disability caused.

My nurse of course had to talk me through lots of things that he legally had to tell me. Then we are on to the all important demonstration. However, from the moment he switched on the demo device I became distracted. There on the screen it said T8 and all I could think was Terminator. In the first movie Arnold Swartzenegar played a T-800. I immediately slip into a fantasy world and start to ponder the possibility that my RebiSmart could be a very early creation by Cyberdyne, a tiny device created to help people but that will turn against us. Dazed by my shocking realisation I subtly check the manufacturers name whist administering a fake injection onto a synthetic patch of skin. I am relieved to see the name Merck Serono, not Cyberdyne (nor is it a subsidiary of the latter, I’ve checked – you know, just in case fantasy has become reality).

Back in the real world, my nurse explains that the T is for Titration and that my own RebiSmart will work its way down from T12 to nothing whilst it slowly increases my dosage. After my nurse finished programming my device the time had come and I injected myself for the first time. The process – switching on, loading needle, injecting leg, ejecting needle, turning off – takes a minute, maybe 2. It was all a bit underwhelming – in a good way of course. I could barely feel the injection – just a slight sting really. Then it was time for me to go home and wait for any side effects that might occur. I was prepared for all the possibilities – the flu-like symptoms, aches, stiffness, insomnia, upset stomach, skin sight reactions and the dreaded fatigue.

But I, little miss positive, had made a decision a few weeks ago. I was under the impression that the general feeling from people might be that I was bound to suffer with the side effects, particularly from people who had experienced problems on DMDs. Being stubborn, I therefore chose not to have side effects – simple right? I read somewhere that people who approach treatments for illnesses with a positive attitude do better. So was my decision just deluded thinking?

It’s early days and I can’t say that I’ve been entirely side effect free but I think I’m winning the battle. A headache for a couple of hours is easily manageable with painkillers. The faint red marks which have appeared two days after the first two injections is a great excuse to moisturise with pure Aloe Vera gel. That’s it, so if that’s all the negative stuff that Rebif has to throw at me then that’s fine – I can deal with that. Because I hope that my RebiSmart is going to be a Terminator of sorts. I know it can’t cure me, but if it can keep the disease at bay then it’s got to be worth it. Only time will tell. One thing I do know – everyone’s injection device deserves a name. What better name for mine than Arnie – hasta la vista baby

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My Body Is A Temple… ish

If you had said to me this time last year ‘you’re going to become a Yoga addict’ I would have laughed and said no way. This time last year I was working out what my resolution for the new year was going to be or rather what my aim for the year was going to be. Something along the lines of lose half a stone and have a flat toned stomach. My plan to achieve this was to do circuits 5 times a week, I’d been meaning to get back into circuits for a while but had decided to put it off and start fresh in the New Year. It’s funny isn’t it how we put things off, especially with New Year around the corner.

January came and I started doing circuits again, I didn’t particularly enjoy it but I was motivated by the thought of fitting back into my favourite jeans. Then the first of my two relapses happened and I was diagnosed with MS. Exercise wasn’t an option for a while other than a walk along the nearby coast with plenty of rests. After 3 months I began swimming, once or twice a week. I love swimming as I’ve mentioned before but I was itching to do something else too. I tried returning to circuit training once or twice a week but I no longer felt motivated – not only was I concerned about overheating and the lack of feeling in my feet but I really didn’t enjoy it anymore.

For me being diagnosed with MS really motivated me to do things I had always wanted to do but also it made me value the times when I felt well. So why did I want to waste an hour of my life doing something I didn’t enjoy? Was that flat toned stomach really so important? The two things I had read could be really good for me when I was first diagnosed were swimming and yoga. I’d tried yogalates but didn’t find it relaxing and kept getting my left and right mixed up.

Then around 6 weeks ago I was talking to a colleague in work. I was telling her about the deep breathing exercises I did when I was stressed so that I didn’t become dizzy. She said I should try Yoga that there maybe a space for me in the class she went to. I fobbed her off, saying maybe in January and thought nothing more of it. Then the following week I had an e-mail from the lady running the class saying of course there was room for me and that she had worked with people with conditions like MS before. Damn, I was tied into at least giving it a go. So the following week I turned up to the lunchtime class in my extra long Ramones vest and a pair of leggings expecting to be bored.

An hour later I left, a little wobbly on my feet and so chilled out you wouldn’t believe. The next day I found I had that familiar post exercise ache, not painful but the pleasant feeling that I had achieved something. Yet when I thought back to the Yoga class at no point had I really broken into a sweat. I went along again the following week – partly to see if it had been a fluke (with my lack of balance I wasn’t even very good at it!). Again I left feeling super chilled and not just that, healthy – I didn’t want that bag of prawn coctail crisps I was going to treat myself to – I wanted fruit and water. The following week I was devastated to learn it would be the last class before Christmas. That’s all it took, three classes and I was hooked.

Devastated that I would have to wait until the new year for my next Yoga class I ordered myself a Tara Stiles DVD and book. On Christmas Day when most people were having a pre-dinner drink down the pub I was sitting on my mother-in-laws floor, book open, practicing yoga. Boxing Day morning I did the same at my parents. In fact I’ve done Yoga almost every day for the past three weeks whether it’s been the DVD, the book or just ten minutes in bed before I go to sleep. I wonder now if I hadn’t gone along to that first class whether I would have gone in the new year or would I have found another reason to put it off as I’d been so willing to do. Because that’s the thing about having MS for me, I don’t know what’s around the corner and I don’t know if and when I’m going to have another relapse. Yoga has reminded me that it’s important to make room in your life for the things that make you happy. Swimming and Yoga make me feel good in a way that no other exercise ever has and that makes me happy. It also motivates me to eat healthier, cut out all those things that taste nice at the time but make me feel sluggish or just downright rough afterwards. My body really is a temple, a bit broken admittedly but just maybe a few downward dogs and some lengths in the pool can help out with that. Now, if only I could figure out which Yoga pose helps prevent chocolate addiction!

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Used courtesy of AlMare (Wikipedia)

Going Back To The Future

I spend a lot of time thinking either in the shower or when I’m swimming – it must be a water thing! The other day I was trying to decide the 3 things I miss most about my life pre MS. The things that aren’t really an option for me anymore. I thought it would be easy. Number 1 was easy – baths. What else I thought, it would have been not being able to wear my favourite boots (see previous post) but a Christmas miracle has occurred and I am able to wear them again. I thought harder, going places and doing things sometimes takes a bit more planning these days but I’m not really finding it all that life altering – yet! I’ve always been a planner, a lover of lists.

I continued wracking my brain for a while but decided to go back to baths. I gave up trying to have baths a few months ago because they drive my overly sensitive feet, leg and arm into overdrive. Just what is it I miss so much about them? It isn’t actually the bath as such that I miss, it’s the place in my life it had. Baths were part of my Sunday afternoon ritual. At about 3pm I would turn the taps on, drop in a bath bomb and climb in with a book in hand. That is where I would then stay for at least 2, maybe 3 hours. One of my big loves in life has always been reading but without my Sunday bath ritual and now that I’m back in work full time I seem to have fallen behind with my reading. My ‘To Read’ shelf is on the verge of overflowing (despite this I have still asked for books for Christmas!). So it isn’t really the bath itself that I’m missing but the books I’m not reading.

Of course I could just spend the time I would have been in the bath curled up in the arm chair reading but other things have crept into that time slot. I’ve developed a love of making jewellery, something I’d always fancied trying but didn’t until my diagnosis inspired me to stop thinking about doing things and actually do them. Most Sunday afternoons I am now surrounded by beads and bits of wire. I used to read most lunch times in work as I’m fortunate to work in the same building as Swansea’s Central Library but now I find myself going for walks most days – stretching my legs and taking in some fresh sea air. When I’m not walking I’m attempting to bend myself into peculiar positions in a yoga class. Even now, I’m sat in the Library writing this when I could be reading!

So technically it isn’t even the books I’m missing – it’s time; time to read books, to make more jewellery, to write more blog posts, to swim more, practice yoga, watch films with my husband, play with my cats, visit friends and family… the list goes on. Since the summer, when I finally started to feel better from the March/April relapse I seem to have had a new lease of life. When I’m feeling well I want to fill my time with the the things I enjoy and the people I care about (with rest days built in of course!) it’s just there are so may more things to fit in now!

So it turns out I don’t know what I miss, though there is no doubt that my life has changed. Some things have of course changed for the worse but others for the better – the silver linings. I’ve found that I have more going on in my life now, things I only thought/talked about doing and new friends have been made. I’m definitely more appreciative of my life now and I think I’m enjoying it more because of that. What I could really do with for Christmas is some extra time… I wonder where I can buy a Delorean with built in flux capacitor from?

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Image of DeLorean DMC-12 used courtesy of Kevin Abato http://www.grenexmedia.com via Wikipedia

These Boots Are Made For Walking

As Autumn turned to Winter it would have been normal to have concerns about snow and ice, heating bills, colds, Christmas shopping… My big concern was am I going to be able to wear my Winter boots?

In Spring I was forced to get over my phobia of wearing flip-flops outside the house (I hate my feet!) as it was the only thing really comfortable for my burny, tingly feet. When I returned to work in the summer it was fine – I invested in some ‘pretty’ work friendly flip-flops armed with a tube of super glue for when a bead or two inevitable decided to drop off! But then autumn approached and I knew that sooner or later I would have to brave shoes again. The stash of ballerina pumps that live under my desk were taken out and dusted off. Of course they made my feet tingle more but they were easy to slip off and no one seemed to notice that I spent half the time walking round the office with bare feet. Even my Converse had become comfortable once again, no more weird shooting sensations up my legs.

Then came the newspaper articles. Bold headlines on the front of the local paper read ‘Worst Winter Ever To Come’ or something similarly over the top. My worry was not how do we get ourselves down the huge hill we live at the top of – you can’t even consider it in the car and on foot there is the risk of falling (done that before). My big worry was how am I going to trudge my way through slush and snow in my Low Tops!?

I haven’t missed wearing heels since my diagnosis because I hated wearing them before and rarely did – only weddings, christenings and funerals warranted there appearance. But my lovely brown Winter boots, my beloved first choice item of footwear purchased last year – well that was a different matter entirely. Occasionally I would glimpse them in the back of the wardrobe but had pretty much accepted that the chance of me wearing them again, certainly any time soon was unlikely. I mean if I couldn’t even cope with my outdoor running (but mainly fast walking) trainers what hope did I have?

A couple of weeks ago I finally built up the courage to take them out of the wardrobe. I took a deep breath, slipped a foot inside one and pulled it up. Nothing happened, no increase in the tingling, nothing shooting up my legs. The benefit of being forced to stop doing circuit training and weights 4 times a week and eventually replace it with swimming, walking and more recently yoga is my legs are actually thinner. My once tight boots are now loose-ish and so much more comfy. As it turns out the one thing I was sad about not being able to wear again are actually better than ever and really are made for walking.

Making lemonade #2

Caroline A Davies:

Thought this was a great really well written blog post.

Originally posted on Dave's Magical Brain:

Way back when I started secondary school, a rumour went around that all the boys would need a medical during the first term. This would involve a procedure where a nurse would hold our testicles while we coughed.

This never happened, of course, but a part of me believed it. It made the eleven year old me unduly anxious to say the least.

I often think about how cool it would be to be some sort of guardian angel to my awkward, shy, younger self. I’d put a supportive arm around my own shoulders and whisper something into my ear… some mature advice to make me feel better: “That thing about a nurse holding your bollocks? It won’t happen. It’s utter nonsense… ha ha! Just you wait another 30 years.”

Fast forward to the other week…

I’ve learnt a new skill!

It involves passing a foot long length of tubing…

View original 598 more words

I Am Like A Trivial Pursuits Piece

So I was working on post about my favourite pair of boots the other week (intriguing huh!?) but I decided to put it to one side and to write about something more serious. Because however well I adapt to life as someone with MS – the challenges it brings and those all important silver linings – it does have a massive impact on those around me. Though I may be positive 99.99% of the time there are days when of course my well being is affected.

I was referred to see a Cousellor through work, not entirely sure that I needed to see one. For me Counsellors helped people who suffered with depression and anxiety like my husband, people who are struggling to cope with their lives. I felt that actually, I was pretty okay with things – I knew what was wrong with me (at last!), I was feeling better week by week and I was going back to work. But the service was offered to me as a support mechanism so I thought why not embrace the opportunity.

Over a period of around three and a half months I saw a Counsellor 6 times. They specialised in amongst other things, people with chronic conditions. By the end of the first session it was clear to me that I did need Counselling, someone who I could speak openly with who didn’t know me. Because while I wasn’t really worrying about myself I was constantly worrying about the impact my MS was having on other people, I was worrying about them worrying about me! My big relapse in April didn’t happen at a great time for my husband who sadly was going through his second severe bout of depression within a year (which thankfully is now under control following his diagnosis of Bipolar Disorder) so I wouldn’t necessarily tell him when I was scared or when my feet were driving me potty. I knew family members would be upset and concerned but even now I’m taken aback by how upset so many other people were by my diagnosis and continue to be – of course it’s flattering to have people care that much and I really appreciate it. Old friends and colleagues will read a post which I try to approach with humour but they are upset when they read it and I don’t mean for them to be.

The other thing I didn’t think I had a problem with was stress – I’ve always thought of myself as a pretty chilled out person. Then I rolled up to a session, apologising for being a bit out of sorts but I was feeling rough because my balance was off and my right eye was blurring. By the end of the session we knew that if I got too frustrated or anxious the dizziness and vision problems from my early relapses returned. Looking back I could see it, whether in work or at home. I learnt a breathing technique (which I’m still not very good at!) to calm me down and I can’t remember the last time I got dizzy like that – I just take a 2 minute time out to stop and breath.

Over the sessions I learnt that I can’t hide things from people and that I can never completely protect them from my MS. I felt guilty that I was the cause of people wanting to meditate for me or buy me gifts. I felt guilty that I had to ask my husband to do things for me that I wouldn’t have needed to before. Essentially I felt guilty for the effect my MS was having on people. But of course – and it took me a while to recognise it – it isn’t my fault. The people who care about me will worry and sometimes be upset by what they read or what I tell them because it’s human nature. I have to accept this just like I accepted that I had MS.

The final thing that the Counselling did was reassure me, so when I did have ‘moments’ like at the Reading Festival when little miss positive became frustrated at being ‘different’ I knew it was okay to feel that way. It was also reassuring to know that it was okay for me to be okay with having MS. Not happy about it obviously, but accepting that MS is part of who I am now. The important thing for me to remember is that it is just that – a part. I am like a trivial pursuits piece and my MS is just one segment of my life. Sometimes, it gets to have 2 segments, but I’m not to let it take over. It should never be more that 2 parts because there has to be so much more to me and my life. By accepting and adapting and letting people help me MS doesn’t get all 6 pieces and win the game. I’ve ‘bagsied’ the blue piece, which colour do you want?

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Image used courtesy of Christian Heldt