Little Miss Not Quite As Positive As I Normally Am But I’m Sure I’ll Get Over It!

Today is the husbands birthday. Today should be all about him. We should have gone out somewhere for the day – his choice, then either out for a meal tonight or a home cooked meal by me – whichever he’d prefer. Today’s the day when he should get to do whatever he wants, no housework for him – we’ve taken time off work after all. However…

Today is Tysabri infusion no. 6 which means any plans we might have had for the husbands birthday have been scuppered. It’s a reminder that my MS doesn’t just effect me but my loved ones too. While I cheerily chat to the MS Nurses & my fellow Infusioneers (I thought we deserved a cool name) the husband on his birthday gets to wait around a hospital for me, maybe go for a coffee in the canteen. Tonight I will feel exhausted so the husband has to do any bits of housework I didn’t finish this morning and sort out food – a takeaway, it is his birthday after all.

Today is one of those MS days that suck. Anyone whose read this blog knows I’m on the whole annoyingly positive but just occasionally I have to admit that having MS sucks. It’s not the impact on me, I just get on with that for the most part but it’s the impact it has on everyone else who occasionally have to play second fiddle to my defective immune system that really gets on my nerves.

The husband of course says he doesn’t care. That once you’ve turned 30 birthdays aren’t important unless they end with a 0. He also says that keeping me well is more important than his birthday and I know that’s true but it doesn’t stop me from feeling bad.

On a positive note (or two) because there always has to be one with me – I’ve worked out, unless they change my appointment day, the husbands birthday isn’t likely to fall on my infusion day for at least 11 years. We won’t talk about Christmas because that’s a whole other blog! Positive note number two – the drug seems to be working. During my strength tests with my consultant last month I beat him in our equivalent of an arm wrestling competition – yay me.

So even when I’m writing a not so positive post I can’t help but find a couple of positives. Because at the end of the day being negative doesn’t get me anywhere. And for some reason being here, chatting, laughing even – it makes it okay to not be quite so positive. A normal level of positive maybe…

Positive note no. 3 – I’ve written another blog post.

Sticks and (Mile)stones

I can’t believe it’s been four months since my last post. As the saying going ‘time flies when you’re having fun’ aka landscaping your garden, running a part time jewellery making business as well as working full time, going on holiday and the list goes on. I’m not complaining about being so busy – it’s great being able to be so busy.

I’ve intending to blog numerous times – I even had a list of ideas on my fridge. Interesting articles in Women’s Health Magazine that were relevant to my MS featured heavily and of course my milestone. In June I had gone a year without a relapse. But I’m easily distracted! I’ve concluded that I need to be trapped to post! Trapped may be an exaggeration but sitting in a hospital chair hooked up to my four weekly Tysabri infusion makes it difficult for me to do other things. Which is why I’m writing this now though intermittent WiFi means it probably won’t be posted until later.

I don’t really have any thoughts on my one year milestone now. I’m not sure what I expected to feel – it just kind of past me by. I think my real milestone was ten days ago at Reading Festival when I realised how far I had come in a year. I had gone to Reading Festival in 2013 still accepting that I wasn’t as physically able as I used to be, seeing myself as different from other people. Determined initially not to use the stick which I’d bought specially, not to go on any viewing platforms. That weekend helped to change me – helped me realise that ‘I wasn’t giving in’ if I used those things – I was adapting.

A year on, unfolding my stick, I have no problem with using it. I know that on an uneven grassy field wearing boots (having lived in flip flops for months) I’m going to struggle to balance due to the feeling in my feet. I also know that sometimes I’m going to need to sit down, that I won’t always have the strength to get pushed around in a crowded tent, besides the views from the platforms are awesome. Because I don’t want to miss any of it, I want to be there all day every day. No longer scared of using my stick it amazed me how many other people I saw with walking aids including lots of people far younger than me. I never was different – I just hadn’t been able to see it last year.

If you look at it the other way (and I know it tends to sound cliched) we are all different. Most of the time you can’t tell I have MS by looking at me – my illnesses is hidden away. Just like my friends with stomach conditions, auto-immune conditions, anxiety disorders, depression and a husband with Bipolar Disorder. It’s easy to build up to a milestone but actually I think the milestones let you know when you’ve reached them like they did me at Reading.

Listening to my favourite band of the festival play I thought about my life with MS and just life in general. I know why I’m so easily distracted, why I’m busier now than I’ve ever been – it’s because I know right now I’m probably feeling better than I have for six years. I also know that there is no cure (at the moment) for my MS, but I’m managing it the best that I can so I want to make the most of being able to do things when I feel well. One of my favourite books, the journals of Dan Eldon is called ‘The Journey is the Destination’. Though tragically killed at a young age they show just how much he ‘lived’. Though ultimately sad his is an inspiring story. I don’t want to be someone just waiting on a cure, afraid to do the things I want to do.

I’m learning to know my body well enough now to know what I can and cannot do. Four songs into the Augustines set, I can see that I’m not going to get pushed around as long as I don’t go too near the front. I make my way into the crowd, stick in hand and get lost in the music – just like everyone else around me.

Me and my stick with Billy and Eric from Augustines

P Is For…

I recently said farewell to Arnie, my trusty injection device that has served me well since January. Ironically the week after I started injecting Rebif I went for an MRI scan which made me eligible to have Tysabri infusions (it’s also known as Natalizumab but seriously, as someone with MS and occasional speech issues how am I meant to say that!?). I’ve had no problems with Rebif but I felt Tysabri was the right choice for me – it’s chances of stopping relapses being over 65% compared with 33% (it’s all about those numbers again!).

The thing is, when I made the decision (which literally took me about 10 minutes – I’m very decisive when it comes to these things) I didn’t take into account, or rather I conveniently put to the back of my mind the following:

– Hospitals kinda creep me out – I will now have to spend 2 to 4 hours in one every 4 weeks;
– Needles – now I know I’ve been injecting since January but the Arnie has done all the hard stuff and it was not into a vein; and
– Blood (this is the biggest issue) – the sight of blood, particularly my own and even the smallest of quantities has the tendency to leave me either sat with my head between my legs trying not to throw up or lying on the floor unconscious.

So last Wednesday, as I sat patiently waiting to be called, the things that were at the back of my mind came to the fore and I became a little nervous. Knowing that I would have to have not just 1, but 2 cannula’s inserted, 1 to administer the drug and the other ‘just in case’! The ‘just in case’ cannula being for allergic reactions to the infusion – statistically unlikely to occur but if I’m going to go into anaphylactic shock it’s most likely to occur during the first 2 infusions. I wasn’t actually that concerned about that; I just didn’t want to look like an idiot by passing out in front of a room full of people. For some reason, when I pictured the room (which I’d never actually seen) I couldn’t help picture it with blood – not copious amounts but enough that it would always be in my field of vision.

As it turns out, unsurprisingly, there was no blood visible. Having the cannula’s inserted was no different to the sharp scratch of a blood test but without the sense of having my life force drained away after! And I could look at them after without feeing ill. Once I’d finished taking photographs (I mean who doesn’t want a few photo’s to remember such an occasion by) I lay back with my book and relaxed. Time went surprisingly fast, for the first hour I’m hooked up to the Tysabri, that’s followed by a 15 minute flush and then I’m unhooked for an hours observation during which time my Neurologist does a few tests (sticking pins in me to check my reactions – you know, the usual!). It was easy. Well almost.

Of course I have missed telling you about a vital part of my first infusion, the part I was least concerned about, wrongly. To ensure that the drug is doing its job and not messing with my brain I will have to undergo regular cognitive testing which looks at Memory, Attention and Concentration, Information Processing, Visual Perception and Constructional Abilities and Verbal Fluency aka word-finding. In someways it was kind of fun but at the same time really quite hard. I was pretty pleased with my score of 96 out of 100, my visual perception tests were particular good and my memory was way better than I expected – I can still remember the name and address of a fictional woman and 3 unrelated words.

It was always going to be the verbal fluency that would trip me up. Even that was going quite well. Then I was told I would have a minute to say as many words as possible beginning with a letter and they couldn’t be names of either people or places. I was given the letter P, a good letter you would think, there’s lots of words that begin with P aren’t there? The Oxford English Dictionary contains in total over 170,000 words so it stands to reason that there are lots of words I could have said… I feebly manage to get out words like pillow and party but there is a word lurking, desperate to be spoken. Surely there are other words I could say but my mind is going blank. I haven’t got a choice – I have to say it. My final score for that test is rubbish, only 11 words in a minute but I’d like to think from the smirk on the nurses face that my answer of ‘penis’ amused her.


A Year Ago Today

A year ago today I took a phone call from my Doctor who told me the news I had been expecting. I took it well, relieved that I at last new what was wrong with me. But then I had to break the news to other people.

A year ago today I cried because I had MS. Well actually I cried because I had to tell other people I had MS. I cried telling my husband, my parents, my friend Alison and my boss. I cried a bit more telling my cats Indiana and Amity who looked at me like I was stupid. So I stopped crying and I’ve not cried because I have MS since.

A year ago today I began my research (from trusted sites only!) and decided which Disease Modifying Drug I wanted to take (Avonex). I changed my mind a couple of months later and went with Rebif – a girls allowed to change her mind!

A year ago today I decided to change my diet to include fish, fish and more fish. I also decided I should behave more like a fish and start swimming again after years away from the pool (the yoga addiction came later).

A year ago today, after a bit of a cry and a lot of reading about my illness I took a walk on the beach at Southerndown with my husband. Actually it was more of a limping, stumbling hobble as my legs and feet were still numb and tingly at that time. We sat on the rocks and sent messages to all our friends and family that still didn’t know and watched the sun set. Then we went for pizza.

A year on and I still have the tingling in my feet but the the numbness in my legs (and arm thanks to a different relapse) is just an occasional thing. The weird pressure headaches and the funny shaky / blurry vision rears it’s ugly head every now and then but I know what it is now and so it doesn’t really bother me.

A year on and in many ways my life isn’t so different. I’m back doing the same job full time. I still have a great family and group of friends. I still have a brilliant supportive husband who doesn’t mind that sometimes my sentences don’t make sense. I still have two deranged fur-balls running round my house.

A year on and while my ‘fitness’ isn’t what it was I am ‘healthier’ than I have ever been. Turns out there is a difference. Goodbye circuits and running machine hello yoga and a Saturday morning dip. I listen to my body now. I know when I need to stop, when I need to get a little extra sleep; but I also know when I need to do something to give myself a bit more energy – amazing what a few minutes of exercise can do. I know how important it is to look after myself.

A year on and I think I appreciate life more than I did before. I don’t waste time on exercise I don’t really get anything out of or books/TV series’ I don’t enjoy. I started making jewellery to improve the dexterity in my right hand and that’s turned into a part-time business that I love.

A year on and I’m busier than I have ever been. I like to keep as busy as I’m able to whether it’s spending time with friends or just reading a book. I like it that way, keeping my mind active (or maybe it’s distracted!) because I don’t want to dwell on things – the negative or the unknown. I don’t want to let my MS take over more than one segment of the trivial pursuits piece that is my life.

So a year to the day since I was diagnosed (the irony that it was MS week is not lost on me!) I am grateful because it’s been so much better finally knowing what’s wrong with me and being able to get the treatment I need. On this, my diagnosiversary I shall again watch a sun set and eat pizza and then see what another year with MS brings my way.


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.

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.


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…

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


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!

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?

Image of DeLorean DMC-12 used courtesy of Kevin Abato via Wikipedia