Gilenya (Fingolimod) - the beginning

I said I'd write something about my experience with my new drug Fingolimod (Gilenya) but have been avoiding it for a long time now. I think I just didn't really want to re-live the first few months as to be honest, they were hell. Once I was well enough to use the internet I searched for hours to try to find anyone who'd had a bad time on the drug but couldn't find any negative stories. If you're telling a positive story of your experience with Gilenya I hope this doesn't sound like I don't like your blog, there are a lot of talented writers talking about the positive side of Gilenya at the moment & I love having a read. I hope I can join you in being positive about it soon but apparently I'm a bit of a medical anomaly. Well, I hope I am, it was horrible. Just in case anyone is struggling with the drug, or thinking about starting & can only find positive stories, here you go:

I started Gilenya on 18th December 2012, I went into hospital for the compulsory 6 hours monitoring after taking the 1st dose (I believe in the early days of this drug being available someone died in the first few hours so they're understandably a bit cautious) and passed the time by watching TV on my iPad (good idea if you’re wondering how to pass the time and don’t fancy 6 hours small talk with random staff). Unfortunately I felt quite dizzy throughout the whole of the 6 hours so was kept for 8 hours in total, wish I had kept my mouth shut about the dizziness. I did have the quite bizarre luxury (?) of having two MS nurses with me the whole time, 2:1 care for 8 hours, a bit strange but I wasn't going to complain! I think they were just there for the novelty of me apparently being the third person in Nottingham to get the drug? Who knows. 

The next day I was ‘resting’ at home and felt nauseous so went upstairs to fetch my sick bucket (yes, I have a dedicated sick bucket), I sat on the side of my bed with the bucket on my lap and must've fainted/blacked out as next thing I knew I was lying on my back on the floor half way across the room, arms above my head, bucket thrown towards the wall. Wish I knew how I ended up so far away from the bed and on my back?! Annoyingly, just before I'd gone upstairs I'd taken my phone out of my pocket and left it on the coffee table downstairs, so I just lay on the floor for 5 mins till I felt I had enough strength to get up & go downstairs to phone my husband. Luckily he'd only just left the house to go to college (I think. Don't really know if I'd been out for a long time?) so he arrived back home in about 10 minutes. While I was waiting for him to get home, I called my MS nurse just to let her know what'd happened, she said I needed to come straight back to hospital, NOW. Such fun. This resulted in more monitoring, 3 hours ish? I think? And I was sent home again, this time with some lovely anti sickness medicines - Ondansetron & Metoclopramide. 

Over the first week I gradually felt worse & worse and had to make the horrible decision that we wouldn't be able to travel home for Christmas. I haven't had a relapse-free Christmas for the past 4 years now so this was particularly hard. 

In week two I started throwing up 2-3 times a day, I couldn't even keep water down, partly as my taste buds were being silly so water tasted disgusting, and unfortunately it still does. I ended up suffering approximately three weeks of throwing up 2-3 times a day, taking me down to a ridiculously skinny 7 stone 3 lbs.,  with my eyes so dizzy/spinny/wobbly that I kept them shut for about a week.  I ended up spending about 4 weeks in bed as even getting up to go to the toilet & back made me vomit. Did I tell you that I was regularly waking up in the middle of the night to vomit? Yep, being woken up at 3am with just enough notice to grab my sick bucket which was living beside my pillow. Literally no other reason for waking up. Thank God I always had a couple of seconds notice of the impending vomit or this could have been a much messier tale. 

After approximately 4 weeks I was able to open my eyes enough to watch TV (I’m sure a normal person would say ‘and read books’, but I’ve only read 6 books in my life so thats not really a thing) and finally managed to venture downstairs without throwing up! Throughout this time my balance was very dodgy, I listed to the right, even when I was sitting down I still drifted uncontrollably to the right (very weird). Walking was a mission, I couldn't do it without help. I only managed to walk when leaning on both of my husbands arms, and even with this support was still falling into walls, doors, banisters, floors... I also had very weak legs, I fainted/collapsed-not sure what happened this time, once more on the way to the toilet. Even with assistance I was still falling to the right. 

The next delightful chapter of this horrible tale was that after a month/5 weeks of being on Gilenya, my left eye decided to float around on its own, think lazy eye style. I could see, just about, but it was double vision if I had both eyes open. Luckily if I held one eye shut I could see mostly fine. This did slowly improve but it took about 2-3 weeks to be able to see straight out of both eyes and a further month and four visits to ‘eye casualty’ to see single vision when looking to the left. And a course of steroids. 

At the beginning of March I managed to get up from a chair and go to the toilet on my own (woop woop!) so could be left on my own enabling my husband to finally go back to uni (AKA 'vicar factory') part time, then full time a week later. 

Throughout the whole duration, the side effect that has upset me the most (as there's literally nothing I can do about it) is the ridiculous amount of hair loss, especially as according to my neurologist & MS nurse my hair is not falling out (um...do you want to come round and explain that to my hoover?) and if it is, its just because I'm old. Thanks. I'm 26. 

Unfortunately, as you may have already guessed, the second part of this story was me having a new relapse. Yes, I had a relapse whilst taking Gilenya. Actually, I've had two relapses now, but I'll tell you about that another time.

Luckily the story does get a bit better but it was really tough at the beginning, especially as I wasn't expecting it. I wish someone had warned me of how horrible this little pill could be, but I’m glad I started taking it as I would have always wondered.



Just in case you’re curious, in addition to the hair loss, here are the side effects I have experienced on Gilenya so far: 
• nausea - am still taking meds everyday for this
• vomiting - 3 times a day for approx. 3 weeks
• fairly constant light headache - think 80% of the time, but the majority not quite bad enough to take paracetamol for
• seeing stars - lasts approx. 30 mins, like a migraine but with no pain, occurs approx once a week/bi-weekly and is something I’ve never experienced before 
• itchiness - just randomly for no reason, like on an arm - very weird
• stingy eyes - in the corners and when looking to the extremes of my vision (although apparently the extremes is normal, even though I've never had it before)
• weight gain & increased appetite, which isn't necessarily a bad thing apart from the fact that having put on two stone since Christmas I can only fit into two pairs of my trousers and ZERO dresses - I had to buy a new dress the other day for a wedding, obviously that was quite traumatic (wish there was a sarcasm font)
• And, what might be the only real positive, according to my husband I have become 'quite giddy', I think he means hyper? Positive? Maybe its taken him until now to realise how absolutely hilar I actually am? ;)

Christmas

Hi, Jimmy here, stealing Debs' blog space for this. Apologies for the abrupt change in writing style that you are therefore encountering. Apologies also for directing you to a longer message than a simple tweet or Facebook update, didn't want to be one of these people who use social media for passive aggressive feeling-sorry-for-myself messages, and flood your timelines with relentless negativity, so thought I'd make it an opt-in experience by posting this blog link.



Have been quiet recently on twitter/Facebook (both Debs and me) because we've been having an absolutely crappy week.

On Tuesday Debs spent the day in hospital receiving her first dose of a new MS treatment, which, fingers crossed, should help prevent the kind of problematic relapse we've encountered so much over the last few years. All went well, it didn't cause her heart to do anything strange or weird which was the doctors main concern, so Tuesday evening we came home, and everything was mostly ok. Debs felt a bit rough, but spending a day in hospital, taking a new drug, having your blood pressure taken every hour and a couple of ECG's can do that to someone who's not keen on hospitals!

Wednesday morning though Debs found herself feeling sick, and blacked out. We returned to the hospital pretty darn quick, and the MS nurses and consultant, while being lovely, weren't able to be that helpful. Essentially they said, 'stick it out'. They gave us some strong anti-nausea drugs and we came home. Things since then haven't improved.
Debs is still feeling sick, and being sick too. She can't rest her head back without needing to vomit, so sleeping hasn't been easy or restful, in fact she now has a bad neck from resting her head forward so much. Her eyesight has also declined, she is unable to focus on anything without her eyes wobbling, and this obviously makes the nausea worse too. Her balance is gone, and she needs help getting from bed, to sofa, to bathroom, etc particularly as we have rather steep stairs. She doesn't really feel like eating unsurprisingly, leaving her with the option of sitting still, with her head in an upright position, all day, everyday. Watching TV is out, sleeping is out, reading is out, eating is out, moving is out... Not much fun.

To top it all we've obviously had to cancel all our plans for Christmas. We were hoping to have a nice weeks holiday after a long and, at times tough, term here in Nottingham. Deb's health hasn't been great for much of the past past few months, and there is plenty of work for me to do college-wise, (let alone trying to be a nurse alongside it) - so some time relaxing and seeing family and friends back in Cardiff and Tring would have been ideal. But no, we're going to be stuck here in Nottingham, no likelihood of going anywhere for a while.

We're trying not to feel sorry for ourselves, trying not to whinge, but it's been a rough week. We are trying to be positive, trying to trust in God for healing, trying to appreciate the good things we still have (the NHS for one - let's it hear it for a wonderful organisation!) but it's tough, and we're struggling. So if you have any spare prayers we'd appreciate some. Also please accept this as an apology for a lack of participation in any Christmas good cheer that is going round, we might not feel like taking part in this.

This does sound quite whiney reading it back, and I apologise. We are blessed in many ways, but wanted to be able to share some of our current struggles too, and not pretend that we're all good, and happy happy joy joy. 'Cos Christians are allowed to have crap Christmases too right? And to use words like crap?

We hope that your Christmas is a good one, we hope ours is better than we think it might be at this stage. God is born a baby, Immanuel - God with us, this is our hope - may it be the reality of our existence too.

Fighting for Fingolimod (Gilenya)

Having MS and being needle phobic is not a good mix. I’m not sure where my hatred of needles came from but its big, huge, I can NOT do needles. It’s not about the pain as most nurses seem to think, I know its only going to be a ‘small scratch’ which you can’t really feel and doesn’t actually hurt. What I don’t like is actually having something inside my veins, I can’t even cope with the thought of a needle breaking the skin and being inside me, bleugh. [Even typing this is making me a little queazy. Seriously, I feel a bit sick now... deep breaths...]

For the last couple of years my neurologists have been trying to get me onto medication to help manage my MS. As theres no cure they like to give you medication to try to reduce the amount and severity of relapses which sounds great, especially as mine is quite active so initially I was on board, I’d love some drugs, thank you. Then they tell you what kind of drugs they are, not a little pill I can pop each day, nothing that simple but varying kinds of drug options all including needles. I could choose to have drugs once a month via IV drip at hospital or inject MYSELF drugs everyday or three times a week. Seriously, inject myself??! How is a needle phobic person ever supposed to do this?! So initially I said no to these options as how was I ever supposed to make injecting myself part of my everyday routine? I remained very firm in my decision until I had another relapse. It was only when I was at rock bottom, in pain, throwing up, that I found myself seriously considering injecting myself as I hadn’t really been left with any other option, I would literally do anything to reduce the chance of this happening again. 

My neurologist was obviously very pleased that I’d come round and was willing to try the three-weekly injections but unfortunately this little chapter of my life was very short lived. What they don’t tell you is that the injections are going to be worse than any other injections you’ve ever had, that they will be more painful than you could ever imagine them to be, that they will leave you bruised and in pain for a considerable amount of time after the needle has been taken out. Oh and that the one main side effect is ‘flu-like symptoms’. Basically the whole time you are on this drug you will feel like you’ve got the flu. At least if you’ve actually got the flu you can take some time off work, try going to work every day for six months with flu. I’m sure some people do get on alright with this drug, I am well aware that I’m a bit of a wuss but I just couldn’t cope on it. I think the last straw, the day I decided I was giving up was when one of the needles got stuck in my leg. Bleugh. 

So I was back to battling the MS on my own, no help. Or so I thought. Earlier this year NICE (British medical people) finally agreed the use of a new pill form of MS medication in England (Scotland apparently don’t want it). Yes a PILL! No more needles! Although obviously being a new drug this pill comes at quite a hefty cost. You need to take the pills daily at a cost of £40/day. [Eek £40/day!] The feeling of excitement and relief was quickly replaced by the feeling that I’d have a fight on my hands. 

The NHS has a couple of criteria for getting your hands on these pills - 1. that you’ve tried one of the injection versions unsuccessfully for a year, 2. that your MS is ‘very active’. Unfortunately I obviously don’t fit into category 1. and I am just learning that proving your MS is very active seems to be the same as ‘how longs a piece of string’. My neurologist is keen for me to start on Fingolimod/Gilenya (the new pill), she just has to submit my case to the Primary Care Trust (PCT) for them to agree the funding...so my fight has begun. The MS nurses are busy collating my records to create a good enough case for Fingolimod and I think all I can do is pray. Pray that everything I’ve been through is recorded accurately somewhere, pray that the PCT look kindly on me, pray that the NHS works quickly this time. Hopefully this fight won’t be too hard. 

10 things I love about 'the north'

Yes, despite what people have been telling me, I'm still convinced Nottingham really is in 'the north'. My reasons: the M1 signs say 'to the north' and the weather man tells me it's 3 degrees colder here. Brrrrrr. 

Despite being out of my lovely, warm, south-east comfort zone, there are a few things I'm loving about the recent but scary relocation:

1. I have begun my training to be a vicars wife. Eek! First lesson - everyone at church suddenly wants to find out all about you (basically I'm practicing my happy chatty game face ;) and interesting stories to tell old ladies!)

2. After a 3 year gap we're living close to Emma & Jammy again, yey.

3. I've (almost) survived my first MS relapse without Jimmy here 24/7, maybe I'm stronger than I thought! Still have a slightly numb/dead hand, which is making this typing pretty slow but I've almost recovered. 

4. Its exciting that me & jimmy are already having conversations about curacy placements. It's a bit crazy to think that in 9 months time we'll know where we're going for the next chapter. But very exciting. 

5. We're living in a beautiful old Victorian house, even if it is pretty cold! 

6. It's great to be living so close to town, even if we're 25 minutes walk to college it's only 5 minutes to shops/supermarkets (not that we have any money!) and 5/10 minutes to a variety of churches which is nice. 

7. I've discovered a cute independent veg shop. After a year of getting weekly veg boxes delivered to the door I was sad we couldn't afford this anymore but I've found an old fashioned greengrocer for half the price within walking distance which is very exciting. 

8. It really is cheaper to live in the north. I've been very surprised by the amount of bargain/outlet/discount stores here, even ones I've never heard of. Awesome news for our teeny student budget. 

9. The other spouses & ordinands seem lovely & are very keen to help when I'm unwell which is nice. 

10. I have quickly & easily managed to get appointments with a new MS nurse and neurologist, even if I had to do the referral myself! I <3 the NHS. Now just praying they agree the pills my old neurologist recommended...

Thank you Jack

Today has been a strange day. I very rarely check the trending topics on twitter and when I do, I just check out things that interest me, certainly not noughties MTV stars. I don’t know why I felt the need to check out Jack Osbourne today, but I’m glad (I think) I did.

It’s hard when people come to their own conclusions when you say ‘I’ve got MS’, as most of twitter did this morning. Lots of ‘get well soon’ and ‘how devastating’ tweets, which seemed a little strange to me but probably slightly comforting to others?

I’ve got a huge amount of respect for Jack for deciding to let the world know. It’s hard, I know. It’s been nice that for a day the media is reporting the truths of MS - that there is no cure, that you won’t die directly from it & what parts of you it can (but not always) affect.

From my addiction to US TV (House, West Wing), I have learnt it seems like they treat MS differently there than they do in the UK, hopefully by now Jack will be enjoying a DMT (disease modifying therapy). I say enjoying, I lasted 6 months then had to stop as the side effects were so bad, not a huge fan of feeling like I’ve constantly got bad flu and should be in bed & my hair falling out. I am also a bit of a wuss when it comes to needles though, especially when one gets stuck in my leg!

What Jack did today is huge. It’s a huge thing for him internally but can also seem so much harder as unless you or a close relative/friend actually has MS, it’s very hard to really know or understand what it is. I think it can be quite overwhelming when I tell anyone I have MS, they’re lovely, probably partly as MS is a scary phrase but also as I know they care about me. But to pile that onto someone who has no idea what it is must be hard. ‘Hope you get well soon’ becomes a really nothing phrase, technically I’ve got Relapsing Remitting MS so I should go back to 100% full health in between relapses (periods of illness), but there is no cure so it’s not really possible.

When I have additional illnesses on top of my MS then ‘get well soon’ is a phrase that does mean something. Like now, I’ve got labyrinthitus, an inner ear virus meaning I haven’t eaten in over a week (bar a couple of pears) and am spending 24/7 sat in the same chair due to the fact the world feels like its spinning. Constantly. I know I will recover from labyrinthitus, I’ve just got to sit it out for another couple of weeks and take lots of drugs. I also know that God CAN heal MS and pray for this every day.

I don’t know how I would cope having MS without God. Jack, thank you for raising awareness of MS, I do hope you can find comfort in Jesus.

Jesus, please give me a passion for getting to know you. When I think I’ve not got enough time, make procrastination seem unattractive, give me strength to do what I *need* to do quickly and help me assess what is actually necessary. Guide me to the right parts of your word, focus my thoughts in the right direction and make my life quiet enough to hear you. Please help me make you #1.

The ‘catch 22’ of righteousness

“Suppose there is a righteous man
who does what is just and right. He does not eat at the mountain shrines or look to the idols of Israel. He does not defile his neighbor’s (sic) wife or have sexual relations with a woman during her period. He does not oppress anyone, but returns what he took in pledge for a loan. He does not commit robbery but gives his food to the hungry and provides clothing for the naked. He does not lend to them at interest or take a profit from them. He withholds his hand from doing wrong and judges fairly between two parties. He follows my decrees and faithfully keeps my laws. That man is righteous; he will surely live, declares the Sovereign Lord.”   Ezekiel 18:5-9 (NIV)

I’ve been thinking a lot recently about what I’ve named the ‘catch 22’ of righteousness. If I want to be righteous because the bible says I will then ‘surely live’, am I not just being like the Pharisees? Am I just following the rules to the letter so that I will gain something? I’ve really struggled to get my head round how to go about trying to be righteous for the right reason. The biggest question for me seems to be ‘what is the right reason for wanting to be righteous?’. If I put a reason to my desire to be righteous, it somehow feels like a contradiction. Like I’m only longing for righteousness because there is some kind of gain to it. I found myself coming to the conclusion that my longing for righteousness was so that I would be closer to God. But then surely that’s me giving a reason to wanting to be righteous and I’m back where I started, feeling like a Pharisee. After pondering this all week and confusing Jimmy with my muddled thoughts, I decided that perhaps the question I need to answer was how can I learn to be righteous without it being about me?

I love this quote from Bear Grylls, 
“Sure, we want to change the world, lead friends to Christ…But the way to do this is to keep close to Jesus. To nestle, not wrestle.”

I love the beautiful imagery of nestling into the Fathers arms; being close to Him, just as a parent holds their child safe and close. That when we are nestled close to Him, the rest just comes. When we live that near to Jesus, others can see it. When we are so close that we feel safe and secure, whatever situation we find ourselves in, it’s almost like we lead people to Him ‘by accident’, they just can’t resist getting to know the Father. If we’re that close to Jesus, we can’t help but look after the sick, provide for the poor. Is that where true righteousness can grow? That we’re nestled so close to Jesus, idols and things that are not ours just don’t interest us. That we’re so secure in his arms all we want to do is serve the poor; the hungry; the oppressed. Keeping His decrees & laws just comes naturally, we don’t know how to do anything else. Is that when righteousness comes, when we forget about wanting to be righteous but start yearning to know him more? Desperately wanting to be nestled in His arms.

Perhaps righteousness is not something we can work at, our aim or goal, but simply the outcome of being close to Jesus?