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

Support networks

So today, I wanted to write a post on the importance of having a support network, what it means and how it's helped me. I thought I'd look up the proper definition as a starting point but I'm surprised that when googling the term, very little comes back in the search results.

The Cambridge Dictionary states that a support network is: 

"a group of people who provide emotional and practical help to someone in serious difficulty"

I definitely agree with the first part about emotional and practical help, but I strongly disagree with the serious difficulty bit, perhaps because I'm still somewhat in denial about how well the word serious and MS go together.
Yes it is serious I suppose because it's not going to go away, but serious implies that it's very bad and something to be afraid of and I feel that it is neither. The snapshot right now is that MS is an annoying challenge that certainly has the potential to get pretty tough. But today things are positive and it's not impossible to live with, so I'm grateful for that.

Secondly, why should you have to be in "serious difficulty" to need a support network? I would love to say that I know someone who walks through life in one big happy bubble and has had very few challenges to cope with, but the reality is; that isn't what real life is like! Having multiple people from different walks of life to talk to and frankly help you exist, is super important. Surely you are more likely to get yourself into serious difficulty if you are just trying to "do it alone?" Just a thought.



When googling support networks as a topic, I found a really good advice page on a website that discusses "how to build a support network" building-a-good-support-network
This is all very well and certainly looks to be a helpful page, but it doesn't address the big issue of actually being brave enough to ask for support in the first place, or how to find it outside your close friends and family. 
What about those of us that struggle to ask for help in the first place? I personally find it VERY hard to ask for and accept help. I've had to become a lot better at it recently because I can't get better on my own and I can't expect Jonny to do everything either. However I have always found it hard because I don't like to feel like I'm putting people out, asking them to go the extra mile, inconveniencing them. I feel most comfortable when I'M the one doing the helping out and looking after. I adore cooking for people and some of my favourite recipes to cook are the ones that require hours of work in the kitchen, a pestle and mortar and the use of nearly every pot/pan/utensil that we possess. I am at my happiest when I have a full house of friends and family with matching dinnerware and glassware on the table, a bottle of something tasty in the fridge and a maybe a Tagine in the oven. As lots of people can probably relate with, I would always far rather be the provider of care or the helper than the help-ee. There is probably a better word for that, if not I'll be submitting helpee to the Cambridge English Dictionary later on...



Anyway, rambling on, so my recent experience of actually letting people in and letting them help me is a very positive one. In fact, I think really it's what has kept me going. My support network is pretty sizeable which is fab. It consists of various tiers:

• Immediate family - Jonny my husband. Two parents, a brother and potential sister-in-law, two in-laws, 3 brother-in-laws, a sister-in-law and Callie the cat. 
• Close family - literally too many to list, lots of lovely Aunts, Uncles, Cousins, 2nd Cousins etc and that's on both sides of the family. 
• Friends - school friends, old housemates, colleagues, church friends, fellow musicians, old teachers etc 
• Home group - see below 
• The online MS community 
• Fellow Lemtrada buddies 
• The ones that don't fit in a box! 

The last bullet point I should elaborate on. Something that is most definitely worth mentioning with regards to support networks, is the idea of having a total stranger to talk to. Admittedly, I realise that's actually what counselling is - someone who is detached from the emotion of being personally connected to you. Someone who will simply just listen, and actually when you really care for someone, that's super hard to do. It's hard not to automatically say "you'll get through this", "you're so brave/strong" or "it's okay". I'm not saying don't ever say those things, but when you're really suffering it's often the last thing you want to hear. I am a real hypocrite saying this, because I find this practically impossible to do when someone I care for or even a total stranger is upset. It takes real skill just to listen.

I may still go down the route of talking to a counsellor, but so far, the online MS community has worked really for me in that branch of my support network - a bunch of online strangers who I may never meet in person, who don't necessarily know the ins and outs of my life outside MS but who provide support and often have no choice but to wait until you've finished 'speaking' because you're writing posts!

The point I realised I had a need for this particular branch of the support network, was when I was coming to terms with my diagnosis and I think entering the grief stage. The idea of grieving when no one has died is tricky to understand and I can imagine for those that have lost someone, it probably sounds narcissistic of me to even consider using that word. But the definition of grieving is:


"Deep or intense sorrow or distress"


In my opinion, part of getting your head around being diagnosed with something that is never going to go away, is to grieve and this seems to be a thought echoed by lots of others dealing with the unexpected gifts life throws at you.

For me, grieving meant the most disgustingly unattractive crying I've ever done! We're talking proper movie style crying that is loud, messy, sometimes a little scary and you're torn between feeling ridiculous and riding the wave.
It sounds very self-indulgent and that's certainly how I feel sometimes when I'm really upset but I've learnt quickly it's also really important just to let rip, and for me that's nearly always in private. I felt like such a fool for wanting to speak to a total stranger when I felt like this, especially in the knowledge that I had such an amazing support network - if you've read the list above, I literally couldn't pack many more people in if I tried!
I can't explain why in that moment, I didn't want to share my grief with those that loved me. I don't feel ashamed, I'm perfectly able to (and often do) tell Jonny, my bestie Lea or my Mum when I've had a bad day. But talking with others in the same situation, who are taking the same treatment, and often sharing the same worries is super helpful. A problem shared is a problem halved is that how the old adage goes? Well in the Women with MS group there are over 5000 members and in the specialist Lemtrada UK group there are a further 900, so any small query that you might have, day or night is nearly always answered - usually by about 50 rather fierce MS warriors all at once!



The other bullet point I need to expand on is my Home group. For those of you who haven't clocked it yet I have a fairly strong faith. It's kind of scary to talk about it, because religion is a bit like politics - we've all got different opinions, sometimes rather passionate ones. But one of the biggest parts of my support networks comes from a group of people in the 20s-30s homegroup (which is starting to get slightly ironic as several of us are now on the wrong... sorry RIGHT side of 30).

To provide some context, I attend St Mary's Cogges (Cogges is a bit of Witney that has a farm, there are two St Mary's so this is how we separate the two - unfortunately something I didn't make particularly clear on my wedding invites which caused rather a lot of confusion on the day!)
Something that my church encourages outside of the usual attending a Sunday service stuff is to join what we call a home group. Yes folks, not only do I often endure 2 hours of God stuff on a Sunday, I'm bonkers enough to put myself through another 2 hours in the week. And I'd just like to put this out there, I was originally bribed into it with wine because it was a group that met in a pub (Pub Theology it was called!) which was great fun and involved lots of thought provoking discussions. Then before I knew it I was part of a group with the same people but hosted in people's homes which involved curling up on a different sofa each week having arguments about how realistic it was to actually feed 5000 people, and why were there so many prostitutes in the old testament. (Those were my first two questions, I dread to think what impression I gave in the first few weeks!)

Now I can imagine this may sound like a cult or something really drab to be committed to but let me explain what our home group is and WHY the entire group have been dragged into my support network. Every Wednesday I spend 2 hours with 11 other people at a different house each week (we all take it in turns to host because can you imagine having to keep the living tidy on a weekly basis? No chance!) and we spend time catching up, praying for each other and when we're focussed enough - trying to decipher what on earth some of the bits of the bible are going on about otherwise known as a bible study.

I was INCREDIBLY skeptical about becoming part of a homegroup as I am terrible at committing to anything on a week night that isn't work related, and I do also have a bit of a love affair with my very comfy sofa and a large glass of wine, (yes even on a weeknight, you'd need one too if you taught quadruple KS3 on a Thursday trust me.)

Anyway, I'm pleased to say that with our Homegroup it's not been the scary commitment I thought it would be. No one hunts me down if I have too much work on to turn up, no question is too silly and there has only been one occasion where I "couldn't be bothered" to go and I felt sad to have missed it afterwards. I haven't known the people in my Homegroup for long, some for 4 years, some only for 1 or 2, but we are all at a similar stage of life and meeting up on a regular basis provides a really unique level of support. We share and pray for some fairly classic worries for our age group like career changes, saving up for houses, relationships with colleague/friends, politics, whether or not we'd ever fit a dishwasher into the kitchen etc. Then sadly sometimes our attention turns to the more serious worries like the health of loved ones, each other's personal battles, looking after and providing support to those suffering loss - basically the whys and what ifs. It is a real comfort to share in both each other's good news and bad news and to offer advice and support. I feel like I've made us all sound like very mature adults but in reality things also often descend into chaos and 40 minutes of our time spent together will involve very high end conversations like "How many plastic balls would we buy in order to turn someones living room into a ball pit?" and "How much would it cost to rent a castle for the weekend" - an awful lot but there are several on Air BnB if anyone has a need.


Anyway I digress, the other ways these marvelous people have helped me is to support me in whatever way they can. Providing meals for the freezer, sending flowers, providing fun activities for hospital, sitting with me all day during my treatment, helping me organise lifts to hospital and basically letting me cry, whinge, rant and inundate them with prayer requests for simple things like getting the darn cannula in first time! Something I'm also proud to say is that for a long time, they have no longer been just people from church, they're also very much my friends.


Speaking of friends - last little bit to add! I have two super besties who I don't get to see often but thanks to social media, we communicate daily. Despite what I might sound like with all this "I'm a member of this facebook group" blah blah blah, I promise I'm not a social media addict and I don't like it that much because of the impact it has on our young people. My current soapbox topic (of which there are several) is that I really don't like how social media has changed our society, particularly with regards to causing anxiety and the desire to gain "likes". That's a rant for another day though. 
What I do like, is how well it connects me to the members of my support network who live at what feels like the ends of the Earth - in reality this is my two close friends Lea and Cat who live in Yorkshire and Suffolk respectively. We communicate on WhatsApp, and it's particularly lovely because Lea is mum to my Godson and she regularly posts pictures of his latest antics and his little brother too. Luckily we do get to meet up once or twice a year with husbands in tow and it usually involves a weekend away to set the world to rights whilst bathing in a hot tub, brill!


So, to summarise: support networks rock, social media isn't always awful and I've finally worked out how to change the settings on the blog to allow comments without anyone having to create some random profile - Sorry Kathie and Aunty Janet T!


C x

2 Weeks post treatment - cabin fever kicking in!

It is officially two weeks today since I finished my Lemtrada treatment and I'm pleased to say that I feel that I am doing better than expected.

In my opinion I've had very few side effect symptoms since the treatment stopped, for which I am really grateful. 

The first weekend after treatment I slept through nearly all of both days, I was awake for roughly 6 hours each day and that was in-between cat naps! And boy did the sleep feel GOOD. In hindsight, I wish that I'd been able to sleep more in hospital as I think it would've really helped. My lem buddy Pete wore noise-cancelling headphones to ensure he could listen to music and get some good cat naps in. Jonny is now lusting after a pair of these and so am I because they seem like such a good idea when you're trying to sleep on a noisy hospital ward and your ear plugs keep falling out.

The first week of recovery at home featured lots of tiredness and feeling a bit like I'd been hit by a bus, simple things like showering absolutely floored me for the first few days but then actually, I've been used to that kind of fatigue coming and going over the last year and it certainly wasn't anything that worried me. Fatigue is a classic MS problem and is another thing that can't be predicted. Some days are totally normal and other days I have to rely on Jonny to wash and blow dry my hair for me. On those days even finding the energy to lift my arm above my shoulders to brush my hair can be hard, which is super frustrating but I think Jonny must've secretly wanted to be a hairdresser because he seems to love doing it for me bless him! 

That level of fatigue used to upset me a lot, but luckily it hasn't been an issue for the last few months. Frustratingly my hair is actually thinning post treatment but on the flip side, I still have A LOT of hair thanks to my Welsh genes. I've also got a few friends who seem to be experts in hair care who have recommended all sorts of things to keep me looking like cousin IT. Picture below for those of you that are too young for that reference. I'd like to point out that actually, I'm also too young seeing as the TV series started in 1964...

 

Other new post-treatment symptoms I've had to get used to are night sweats which, sorry to gross you out, should really be sponsored by Persil or Ariel and renamed "night waterfalls" because I now seem to sweat to the point where it's like someone has thrown a bucket of water over me and bedding and pyjamas end up being washed daily, argh. Good practice for the menopause I suppose! 

I've also developed the ability to get chilblains at the drop of a hat, probably from not moving around much as they're usually caused by poor circulation according to Dr Google. I can be sat happily reading a book, feeling normal when boom! My fingers and toes become itchy, hot and swollen within a matter of seconds. Luckily I have a rather large supply of piriton thanks to the goodie bag of drugs I was sent home with when leaving hospital, so the chilblains quickly disappear within a few minutes, phew.

Once of the most enjoyable side effects from the treatment is the steroid munchies, which have been fairly prolific. I suddenly get urges to eat everything and anything although I must admit I mainly have cravings for sweet things so chocolate is high on the binge eating list - swiftly followed by bananas thankfully. I seem to have a normal appetite for meals but the snacking in between is getting a little out of hand. I honestly feel a bit like Augustus Gloop from Charlie and the Chocolate Factory sometimes. Thankfully my weight has stayed mostly the same despite this, I'm fairly sure that I probably lose half a kilo each night from the night sweats, only to put it back on during the day! Don't try this at home folks, this is not the latest fad diet.

Last super thrilling symptom and the one that is the most annoying is shortness of breath. This seems to come on both randomly and after physical exertion, which in my case is mostly just running up the stairs these days. I can't predict the pattern of it yet which is annoying. For example, I can talk on the phone to Mum for 30-40 minutes and feel fine, but when Jonny comes home from work and the verbal diarrhea kicks in, I run out of breath after about 10 minutes of talking. Perhaps that says more about Jonny's ability to get words in edgeways than the actual perceived randomness of my shortness of breath! Either way, it's a little odd. I've been given an inhaler by the hospital which I use when desperate but I'm not hugely keen on relying on it. Deep breathing helps A LOT, the difference in my breathing after taking 30 focussed deep breaths is huge. I can only describe it as feeling like the air isn't going into my lungs but is coming out fine, or feeling like I'm breathing in "thin" air. After deep breathing things feel more normal. 

I have also started trying to make sure that I'm moving around regularly for short periods of time. I've been taking 20 minute walks around our housing estate and more recently I've been reacquainting myself with the wii fit, how very retro.

I can't really remember how long I've had it for, but the wii came out in 2006 and I remember that I bought it with some of my pit band earnings (I should elaborate, not as in coal mining, pit as in theatre pit) whilst at uni so I think I've had it for roughly ten years. I clearly hadn't used it for some time as the moment I got on the wii fit board it genuinely said "Is that really you Claire? You seem a lot heavier than the last time you logged in!". SCREW YOU WII FIT! To be fair to the pesky thing, according to my user profile when I last logged in (6 years ago it reckoned!) I had apparently weighed 2st less. 

Pfft. I shall not be bullied by judgmental technology!

So officially I have one more week to get this breathlessness problem sorted before I go back to work. I am super keen to get back in the classroom but very mindful of the incompatibility of being breathless and a music teacher. I'm hoping to keep getting myself up and about a bit more so that my stamina improves enough for me to be able to holler over the cacophony of 30 xylophones and remain standing up at the same time. Simple pleasures really!

I also hope to be out and about a bit more from this weekend onwards, as although the risk of catching everything and anything germy is still high, I'm not quite as terrified as I was before. Jonny unfortunately caught a cold at the end of my first week which threw us into chaos, but thankfully after being banished to the spare room for a week and my slightly OCD cleaning routine with door handles, towels, bedding, cushion covers, (you name it, I've washed it twice this week) I am pleased to report that so far I have not caught the cold! Woohoo! Who needs white blood cells?

C x