Leaving clasroom teaching - the aftermath.

When I first started out writing this blog it was meant to a regularly updated account of life after Lemtrada - now it's more like an infrequent anecdotal rant instead, oops.

So I'm posting today because I'm having a bit of a "what the hell am I doing?" moment. Admittedly, the last two years have been full of those but this one has been festering for some time and is mostly career related. 

Back in January, I had a meeting with my boss and somewhat gleefully handed in my notice to say I was leaving the school and in fact the teaching profession, for good. It was gleeful because I was just about to go off for 4 weeks to have round 2 of treatment and so I knew I'd only have to actually teach my classes for 2 weeks after that before I finished, wahey! In reality, I actually chose to stay on until May to help Year 11 get through their exam prep and coursework deadlines, which was really lovely and a nice way to wind down my career. 

I'd already been working for the music service part-time alongside my Wood Green teaching hours in the last academic year, and by January I was actually teaching full-time again between the two posts after taking on some maternity cover work for the County Music Service. It felt great to have enough energy to do so much for the first time in ages, but doing the two types of teaching alongside eachother made me start to realise that I'd well and truly lost my love for classroom teaching. 

I think it's safe to say that as a classroom teacher, once you realise that you don't have the enthusiasm or motivation to make whizzy, exciting lesson plans that motivate and inspire young people - it's time to move on. The teachers that are respected by the students are the ones that demonstrate their love for their subject as much as they can. I'd gone from spending my entire weekends coming up with new ways to teach various topics, staying after school so long that my friend Mark would send me a text telling me to go home and wanting to be part of every extra-curricular ensemble going, to doing frankly the bare minimum. Some of which wasn't through choice, certainly losing all my extra-curricular ensembles at once hit me really hard and was a bitter pill to swallow. But seeing someone else with more energy and enthusiasm than me, come in and instantly fall in love with the students and to continue to push them to do their best and sound just fab, well that helped a lot. 

I also remember feeling incredibly guilty because so many of my amazing colleagues were working full-time and working their absolute socks off, and there I was barely working 3 days a week as a classroom teacher and still incapable of finding the joy in it. Admittedly teaching a subject that isn't your own didn't help - I still can't quite believe I managed to convince 3 classes of year 7s that I was an IT teacher AND teach them some basic computer programming! Priceless. 

So many pros/cons lists later, I chose to leave WG and classroom teaching itself after 7 short years and to take my very part-time Woodwind repair business forward as my main job, and to continue working freelance for the music service as an orchestra manager for their touring orchestra OSSO and as a peripatetic woodwind teacher again. 

I worked my absolute socks off this summer to stop myself from feeling a bit odd about not having the usual lengthy summer holiday - which felt amazing. It was such a joy to have WHOLE DAYS worth of woodwind repair rather than a few snatched hours in the evenings and the weekends, I felt so productive! 

But fast forward to now, when colleagues have gone back to work and it's the second week of September and I'm feeling totally lost. I'm not missing the job, (sorry lovely Wood Green colleagues!) I'm not particularly missing the kids, although every time I see my tutor group out and about my heart leaps, I miss my little family and I'm mainly missing the feeling of actually contributing to the community. 

I am still actually teaching a fair bit, working for 4hrs in a local Primary school teaching whole class clarinet (yup that's a class of thirty 7 year old students, all "playing" the clarinet at once!), working with the second youth Orchestra "OSSO" for the county music service and doing about 7 hours of private clarinet/sax/flute/GCSE tuition.

But it's not being responsible for hundreds of kids on a weekly basis, helping them to make the right choices, being there for them if they don't, supporting staff and being part of a big community.

Don't get me wrong, I am happy, MUCH less stressed, healthier and I have far more time to work on the garden etc. Being self-employed really suits my lifestyle, but it's such a big change and I'm just feeling a bit lost. I live to serve other people, and I honestly don't feel that I'm doing that right now. 

I know the repair work does help others, it's great to be able to reassure the parent who thinks he's damaged his daughter's clarinet beyond repair that it's okay and not the worst I've seen! And yes I can fix it! But it's not serving the community on the same scale as teaching once was, it feels like a big piece of me is missing, and I guess I need to work on filling that gap. 

The other thing I didn't expect to be hit by is the change in respect from others. It's really surprised me by how differently you are regarded when you become self-employed. This week alone I've been asked if it's just a hobby, what I do all day and if it pays the bills! Those who know me well will fall about laughing at the idea of me sitting at home doing very little. Being a workaholic who enjoys being stressed is probably what gave me MS in the first place! 

Why is it so hard to believe that I'm able to make ends meet by working for myself and that I'm not sat watching Netflix all day?

The answer to my little identity crisis is perhaps to push myself and the business to get to the point where I can rent some business premises. I would dearly love to have a big enough space to run a workshop, a shop front selling secondhand instruments and a bunch of practice rooms I could hire out to private teachers/students/local ensembles. Maybe, just maybe, being more visual would earn me a bit more respect AND help to serve the community. Who knows, time to go and make a cuppa, fix another saxophone and ponder how I can feel like I'm being 'useful'. 

C x

Sometimes, I'm disabled.

And there’s a controversial title before I even begin. 

Firstly I should say that disability is not a competition as to who is the most or the least. Whether you’re wearing an eye patch, using a stick or a chair or maybe have something completely invisible – it all comes under the same umbrella term of disability and all are difficult to cope with. My biggest challenge with my disability is that it is so variable and I often feel that makes it less believable, even less valid at times. Especially as what I feel that happens to me is self-inflicted disability, i.e. I do things to cause myself to become more aware of being disabled.

For example, this weekend Jonny and I chose to clear the rocks, bricks and wood from bottom of our garden which were left over from us breaking up the very old and leaky pond 2 years ago. At the time we couldn’t afford a skip so we just left it all and it’s been a real eye-sore ever since. So we spent the afternoon lifting heavy chunks of brickwork, breaking stuff up with a sledgehammer and putting it all into the skip at work. I say putting it in, to be honest I had good fun ‘shot-putting’ the bricks into the skip, as you do. We did 3 runs of filling up our van and driving down to the skip before Jonny felt that he was too tired. Yes my fit, healthy, muscular, carpenter husband felt tired quicker than I did, wahoo! And it really was a wahoo moment, but I know that in reality if I wait for my body to tell me that I’m tired then it’s too late. So what I did was fairly stupid, especially as before we even started, I had already taught at music school from 9-12:45pm, attended a 1hr meeting afterwards and driven myself to Oxford and back already that morning.

So we rested for an hour or two in the afternoon before we walked for 30 minutes to have dinner with our landlord, where we then drank too much wine and before finally walking another 30 minutes home. The next day I felt awful unsurprisingly, and even in life pre-MS I probably would’ve spent the day snoozing and doing very little to recover. But I was on the rota to lead worship at church, and I felt I’d probably manage it/didn’t want anyone else to do it, and so got myself up and rehearsed from 10-11am then sang in church immediately after. I love singing and leading the congregation and it’s a fairly new skill I’ve acquired but I do find it exhausting. At this point the fatigue was so bad I couldn’t walk unaided and I had to be helped on and off the stage and on and off my kitchen stool that I’d had the foresight to pack in the car that morning. It gives my worship leading a bit of a ‘Westlife’ vibe but there’s no fear of me standing up at a key change don’t worry! So yes, tiredness had hit me big time, and when I sat down after belting my heart out for the first 3 songs, my body did something completely new and pretty freaky and I had whole body tremors for 15 minutes. Finding yourself rocking forward and backwards and your head bobbing up and down like the Churchill Dog is a deeply unpleasant feeling and unfortunately, one I’ll need to make a note of and report to my nurse I think. Needless to say, Sunday afternoon was spent sleeping out of necessity, and then we ordered Dominos for dinner.

As a result of those antics, I’m still recovering now. (I can literally hear so many MS people saying ‘What did you expect?’) Today I’m not well enough to have a shower unaided, I probably couldn’t cook lunch for myself without supervision (thankfully I’ve got last night’s pizza in the fridge though) and I’ve cancelled my private instrumental tuition sessions for this afternoon because although I’m desperate to teach them, I have to prioritise getting through the rest of the week. Yes it does serve me right I suppose, I am a person with MS and we have to pace ourselves. But then again, should I feel guilty? I didn’t feel tired when I was playfully shot-putting the bricks into the skip, I still didn’t feel tired when it was time to walk to our Landlord’s house. In previous weeks I’ve managed to do the Witney Parkrun on the Saturday (without training), felt exhausted at the time and been absolutely fine by the Sunday, no fatigue, nothing. So does that mean I CAN use the title of occasionally disabled? Because it doesn’t seem like one weekend to the next is the same. I haven’t completed a Parkrun since my first one because I’ve been working on Saturdays which has been frustrating. My brick moving and throwing activity this week felt like good exercise to me, and I’m being told to exercise more, but how can I have the confidence to go for a run etc when it then takes me two days to recover? MS is and always will be unpredictable, which is a nightmare in itself, but I can’t exactly quit all work just to try and let an exercise regime make an impact.

The unpredictability of being occasionally limited in my mobility etc has stopped me from accessing things to make my life easier. Mainly because I think I’d feel like a bit of a fraud. Today I need to go to Boots to pick up some painkillers, but the thought of parking any distance away stops me, which is where ideally, I would apply for a Blue Badge to enable me to use disabled spaces and I think it would make a massive difference to me. But then again, why bother when the next week I’ll probably be able to walk the 500m from the nearest carpark to get to Boots? Today based on my inability to do certain tasks, I would comfortably score 9 on a PIP assessment for everyday living. But 80% of the time I think I’d score closer to a 5, so is it justified? I know how much the system has been abused and how hard others have had to fight to receive PIP. Bearing in my mind that my history of disability assessments has involved me asking occ. health to encourage my boss to stop wrapping me up in cotton wool and to give me MORE work not less, I can’t see a PIP assessment proving particularly fruitful…

Assessor: “So Mrs Bownds, how are you on your worst day?”

Claire: “Cross because I haven’t got enough energy to water all my plants, do a 5km run, make a soup from scratch, make a curry, fix a couple of flutes, teach a few students, do the shopping… I mean is that really too much to ask?!”

P.S

I'm really bad at blogging, I didn't ever actually do an update on how Round 2 was and what it involved! I'll work on that asap.

Two days to go - Lemtrada Round 2

Well it’s deja-vu time again! It’s the end of half term and I’ve got two days to go before my second round of Lemtrada. I had round 1 on the 25th of February 2018 for 5 days, this time it’s only 3 days thankfully and then hopefully that’ll be it for quite a few years! 

Lemtrada/Alemtuzumab is a repurposed chemotherapy drug, it’s a much much lower dose than would have been used with chemo but still carries some fairly dangerous side effects. As a result,  you are watched very closely whilst you have the dose in hospital (monitored every 15 minutes for the first hour of the actual drug and then down to every 30 mins for the next etc) and you have to have monthly blood tests for 6 years to keep an eye on your levels. 

With two days to go before I get “plugged back in”, I’m busy food shopping and batch cooking like I’m preparing for the apocalypse. Not that I don’t trust Jonny’s cooking (although we’ll gloss over the risotto disaster whew he threw everything in together all at once and THEN read the method!) but looking after me during treatment week is hard enough work anyway, so I’ve working hard in the kitchen and also enlisted the help of our wonderful parents to get a weekly menu of homemade microwave meals sorted. Both freezers are absolutely rammed with food to last us for the next 3 weeks. In case anyone needs some batch cooking inspiration we have:

Moroccan Chicken, Beef Chili, Sausage casserole, Thai Chicken curry, Cottage pie, Cape Malay Curry, Courgette and Tomato soup, Pulled pork, Lasagne, Leek and potato soup. 

Everything just needs veg, rice or couscous adding to it, and the ones that need mash are pre-frozen with the mash (last of my potato hoard from the summer.) I know frozen mash sounds gross but actually if you season it well before freezing it’s still passable. FYI, Cheese and chive mash freezes well, as does mustard mash.

So I’m ready, mostly for next week. I probably don’t have enough snacks to combat the steroid munchies but perhaps that’s a good thing as I managed to gain nearly a stone in treatment week last year!! 

This year I’ve invested in a pair of Bose noise cancelling headphones as the neurology ward can be very noisy and with the steroids keeping you up all night, it’s good to sleep during the day! I didn’t buy new as they had a good secondhand pair available online at CEX for about half the price, so I’m rocking the QuietComfort35 model which does very nicely! 

I’ve also stocked up on extra strong mints again (to take away the steroid taste) and a travel sized squeezy squash to add to my water so I drink enough to flush all the dead blood cells out. 

Entertainment-wise I’ve just discovered 5 on demand (My5) which is a whole new world of absolute trash TV, (I love a fly on the wall documentary or terrible reality tv programme!) Plus I’ve got some good books and colouring books to get through. Sorted! 

I have the cannula fear again after having had 14 vials of blood collected in 7 days due to a blood test muck up. My veins are not the greatest when they’re healthy, and right now they’re particularly unhealthy. My favourite phlebotomist Jane describes my arms as a garden full of weeds, I.e you have to navigate through the scar tissue/weeds to get to the good stuff. Lovely. Hope you’re not all wincing at the thought! 

I will post a bit more throughout next week, I’ve decided I must be a seasonal blogger. It’s a bit tricky to type when you’re working full time but with several weeks ahead of me off for recovery, hopefully I can be a bit more of an active blogger. 

Claire x

Accepting the Minority

It has been a LONG time since I lasted blogged. Whoops. Thankfully though it's just been because life got in the way, not because I've been unwell - far from it in fact!

I've had monthly blood test number 6 of 60 (we are monitored for 5 years from the start of treatment, I'm already counting down) and I'm pleased to report that my Lymphocytes are still behaving and not repopulating too quickly. They are currently at a reasonable level of 0.51, 6 months post round 1 of treatment. I'm hoping they will get to 0.9/1.0 by next February to put me in good stead for round 2. 

My health has been pretty good in the last few months, I've had a few blips along the way where my platelet count dropped and I developed menorrhagia and then I had a pseudo-relapse/exacerbation where my body "remembered" the symptoms of a previous relapse for a few hours and I panicked and thought I was going into a full relapse. Thankfully, my support network sprung into action (Jonny, Sue and Pete - sorry Sue for wailing down the phone!) and I recovered quickly. 
On the whole, life is good. I've been working normal hours and coming home to cook afterwards (but resting in the evening - I'm learning!). I've been back in the garden a lot - my Tomatoes have done amazingly, I'm going to be knee deep in soup this winter and I literally cannot wait to dig up the maincrop spuds, eeee! Again, no idea where I'll put them, mash 'em and freeze 'em perhaps? It will be lovely to give lots to friends and family too.

The hardest thing I have found since my treatment and the diagnosis perhaps is that although I am starting to learn my limits, sometimes they are decided for me, often without discussion. I touched on this in my last post 3 months ago when I was finding this most difficult and although I still find it hurtful now, it's becoming less so. 
I am very aware now of belonging to a part of society that is a minority, and there are certain things that I can't always take for granted. I can't assume that the opportunities I once had will come up so easily, because now I come with an added risk factor. And although I am protected by the Disability Act, there are still things that aren't covered by this. Which has sadly been a particular problem in my work.
The last few months have been an emotional roller coaster as a result, I never quite expected to be sat in front of the lovely lady at Occupational Health asking what more I can do to help others trust that I AM still able do the work that I used to do. She is incredibly supportive and writes me lovely reports each time outlining what I am capable of, she also always makes a joke about me being the only person that steps into her office demanding to be given more work. The only thing that we can do to build trust seems to involve spending the next few years "writing a new rule book", by demonstrating good health, (i.e. not requiring time off work because I've overdone it in the week) risk assessing and planning for every probability - always having a plan B and always being prepared.
(Which reminds me of when me and my friend Emily used to laugh at how our Mothers packed suncream, sunhats, brollies and raincoats for every school trip in Primary school regardless of the activity, season, or the weather! Always be prepared!)

It does make me think though, that when you have a disability or any chronic illness, you have to play the game to a higher level in order to prevail. You also have to become much more patient, because it takes time to build trust and to educate people to overcome their assumptions and their prejudices, and trust me, boy do those assumptions start to grate on you quickly. 
I can definitely understand why some people don't allow their illness to become public knowledge, because it's easy for others to make quick assumptions about their shortcomings, in fact it's hard not to UNTIL you are educated otherwise.

But it's not just me, or others with something that puts them in the "minority" who have the opportunity to provide the information that helps to educate others. Both those who are lucky enough to be in the majority and those of us in the minority can and SHOULD help to educate others. After all, we live in a society now that is comprised of so many different minorities - race, gender, religion, health etc that we really should be trying harder to work towards equality.

Potatoes, Chickens and Half-naked Royalty

Helloooooo summer weather! 

Wow, what a difference it has made to have had some decent weather. I am VERY much in full Tom and Barbara mode (of The Good Life fame, hence the blog title). 
The potatoes are merrily growing away, the greenhouse looks like day of the triffids after being packed full of tomato seedlings and the onions are now free from their "cat-proof netting" after Callie dug the first lot up. Pesky cat. 
As ever, I have not been the most sensible gardener and I have refused to throw any of the seedlings that have sprouted, none of this thin out the weak ones, nope. I know that this doesn't make economical sense (and the 250L of compost that I bought last weekend and got through rather quickly seems to back this up) but I don't like to kill anything off intentionally - it's made the effort to grow after all! I may regret this when I have eleventybillion things in pots to water in the summer and the veg patch looks like a forest.

Second step into the world of Tom and Barbara is one that I wasn't quite expecting. Jonny has recently decided that he wants to keep some chickens in the back garden and is planning on building a coop. I'm not totally sure how I feel about this, mainly because a) we have a cat with a penchant for anything that has wings and b) because I'm not sure I want to share my veg patch, which will inevitably get munched on. If the buggers eat my potatoes then they are going straight into the pot with any remaining veg! I will concede that the lure of fresh eggs from the chickens is great, but the cleaning out of the coop is less favourable. Although I am relieved to think that next February it'll be round 2 of Lemtrada and therefore I get 3 months off cat litter tray duty and potential chicken coop cleaning duty due to the bacteria risk and zero lymphocytes. Oh what a hardship!! I've got to have some perks though right?!

I'm off to see my MS nurse tomorrow, I have no idea which one it is, but both Chris and Pete are lovely and very knowledgeable; it's more like going to see a friend than a nurse. It will be nice to report that so far, everything is going pretty well. I've just started exercising again, I'm back to full working capacity including Woodwind repairs and I'm generally feeling positive. I think energy levels have fluctuated a bit more recently so I'm going to ask about supplements and diet etc. but it does seem to be a bit hit and miss as to what works. Also no one can agree on what the correct dosage of vitamin D3 is, not even the neurologists which is a little unhelpful. 

My current supplements are:
Vitamin D3 3000iu
Biotin 1000iu
Evening Primrose oil 1000iu

I'm not totally convinced that anything is doing much at the moment, but I did feel a big difference when I first started taking them so I either need to up the dosages or sort my gut out. A friend of mine suspects that I may have a leaky gut so has suggested cutting out sugar and yeast to help improve absorption. I crave sugar more now than ever before so I'm reluctant to do this but suspect it's probably worth a try. I think the shock of cutting out alcohol may genuinely turn me into a psycho though. I'm fairly sure I'll set out with good intentions at the beginning of the week, get to Tuesday (where I'm tortured by teaching 4 hours of Y8 and Y9) and end up seeing off a bottle of White Zinfandel whilst binge watching Suits on Netflix. Speaking of which, I can't quite get over the fact that Meghan Markle is frequently seen in a variety of compromising positions - argh! Half naked, nearly royalty! Nooo my eyes!

I will not be watching the Royal wedding this weekend as I have been given permission to attend the D of E practice expedition run by school. Hurrah! This is big news as at the present time of writing, I've been pretty much banned from anything related to extra-curricular activities because I'm "not well enough". In fact, I'm fairly sure I'm probably not meant to be on this trip either BUT as you might gather from my tone, I'm not impressed about being told what I can and can't do and as my return to work notes only specified music related extra-curricular activities... I'm going to misbehave and deal with the consequences later.

More on being told "no, you're too ill" by a variety of people and encouraged to fight back by my fantastically supportive occupational health therapist in the next post...

Over and out

C x

Retraining my B and T cells

My second lot of blood test results are in and things are looking good. My lymphocyte levels were at 0.04 for the first month and have only increased to 0.3 this month. 

My understanding of this so far is that this is good although as I will explain in this post, in the UK it's harder for us to tell compared to our US comrades.

To explain, Lymphocytes are a type of white blood cells. They are part of the full blood count (FBC) that will show up on your blood tests, normal lymphocyte levels are between 1.0-4.0. 

The tricky bit to explain is that there are different types of lymphocyte called T and B cells and then within this there are different types of T cells all of which have different jobs! If you're really interested in the science behind it then the following YouTube video explains T and B cells very clearly from about 4 minutes in. 

I found this video through a post by another Lemtrada blogger called Tracey 

In a nutshell, I translate that to mean that the slower the B and T cells repopulate, the less damage being done! 

The drug company website for Lemtrada/Alemtuzumab has a very whizzy graph to show what the suggested rate of lymphocyte repopulation is. However this is where things get complicated as in the UK we only show the general Lymphocyte count, in the US they split it into the specific types of B and T cells (CD4+, CD8+/CD19+) on their blood test results so it's far easier to track your recovery: 

So essentially, this graph just frustrates me as I don't know the individual levels for my Lymphocytes! GRR. For me, knowledge is power. Yes I'd probably fret over my levels on a monthly basis (and I have another 5 years of monthly blood tests to endure, I can just hear my veins crying!) but at the same time, I LIKE knowing what is going on. One of the most interesting things for me so far has been seeing my MRI scan pictures and understanding exactly what is going on in my brain and my spine. I find it fascinating! 

Based on the general Lemtrada patient population in the UK, it seems to me that aiming to stay under 1.0 for at least the first 6 months is a good thing and I've seen lots of Lem patients who only reach normal levels of 1.0 by their 11th/12th months of treatment. On the  other hand, (tricky balancing act that this Lymphocyte malarky is!) there are also reports of Lemtrada patients having their second round of treatment postponed because their lymphocyte levels were too low after a year, several of these patients had peaked at 0.6 and were denied treatment until their levels rose. So here's hoping my lymphocytes continue to do what they are supposed to for the next 12 months!

C x

MS is a marathon, not a sprint.

Since my last post was about a month ago, it's time for an update. Lots to report on, some good and some frustrating. 

I have successfully returned to work, which I'm pleased to say has been going really well. It was pretty overwhelming on the first day and I did cry within the first hour! Thankfully my lovely colleague Celena was on hand to mop up my tears, ply me with tea and to firmly tell me not to overdo it. I think what hit me the hardest was that it initially didn't feel the same as it had done pre-treatment. I had a panicky moment of "Is this the right thing to do? Should I just accept that I don't have the stamina now and quit?" But thankfully after spending a few days teaching alongside our amazing supply music teacher Isobel and doing a very gentle phased return to work, I soon felt a lot more confident and able to take on more responsibility as the week progressed. It was also just lovely to see all the staff and students again after such a long time off.

I'm pleased to report that I'm now teaching my normal timetable again, just as I did pre-treatment and although it is still too tiring to do much after a day of teaching, (thank goodness for freezer meals!) things are going well and hopefully will continue to do so.

Fatigue and my inability to accept it, is quite a big issue at the moment. I am trying to learn to listen to my body more, but it's easy to overdo it when I'm seemingly feeling great. I learnt the hard way about overdoing it through an experience I had after I joined my local MS support group. I am very lucky to have a group who meet regularly only 5 minutes down the road from me. The group is run by lots of very lovely volunteers who support the local MS community. The group hosts chair-based yoga/physio sessions each week, run by a guy called Phil who has MS himself. 
Unfortunately, the first week I went to the group I completely underestimated just how hard chair yoga actually is. As we started the session, I honestly thought to myself "This is great! All seems nice and easy, this will be a doddle if the whole hour is like this!" But no, that was just the warm up, and the moves got harder and harder. Phil was fab and did three different levels for each of the moves. I foolishly assumed I was fine to do the hardest each time as both ladies on either side of me seemed to be managing them fine. As one lady was in a wheelchair and the other had a walker I also stupidly assumed that anything they could do, I could surely do more easily? HA! What a fool.
What I had neglected to realise was that both of these lovely ladies were absolute PROS at chair yoga. Like, scarily good. No missing out moves or becoming unbalanced for them, no no! Little beginner chair-yogi me was doing my best to keep up with a pair of yoga gurus. A bit like signing up for the advanced yoga class when you've never done it before! So there I was, getting myself tied up in knots and slipping off the chair while the others were grace and fluidity personified. Oh the shame!

So unsurprisingly I completely overdid it, and ached for several days after. I also learnt a very hard lesson about doing too much too soon.
I felt like such a muppet and found it difficult to deal with until I returned to the class the week after, not to join in (I figured just walking to the class was PLENTY enough exercise that day!) but to talk to the others and to Phil. They all reminded me that things for me have changed now and will continue to change as my body adapts to the treatment I've had. Phil said to me the most important thing I think I've heard yet - MS is a marathon and not a sprint. 
It's all about learning your limits and pacing yourself. Part of my problem is that I still have a lot of denial about my limits, for example I consider my balance to be pretty normal. But yet based on my results on the Wii fit it's equal to that of someone twice my age.
There have been two occasions recently that I'm not proud of where I have actually made myself tired to the point of sickness as sometimes with tiredness comes dizzy spells and poor vision. Not handling energy levels appropriately has meant that I've missed out on two family weekends because I've overdone it. The only things that revives me in those moments is to submit to the fatigue for a day (at worst two) and then I feel fine. Unfortunately I'm still of the mindset that it means I'm back to normal so I prance around doing too much and not letting anyone tell me otherwise and so the cycle begins again! 


I'm slowly (very slowly) learning that I NEED to plan ahead and prioritize, and that it's actually incredibly detrimental to my recovery to keep doing this. This is something that is particularly important for my work this term. Term 5 is notoriously busy with coursework deadlines, mock exams, recitals and last minute revision sessions. My various bosses have been brilliant at helping me return to work but I've been reminded this week that I must NOT try to be superwoman. My biggest priority is simply keeping myself well, stopping this ridiculous cycle of "ooh yay energy let's do everything now.....oops I've wrecked my body" and generally being sensible. And I shall definitely be trying to do this.

C x