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?

I love this photo. I love it because there’s snow. This is the exact antithesis of my other great love, sunbathing, but there’s something almost magical about snow that I just can’t resist. I’m not the kind of person that wants to rush out and build a snowman or an igloo, or even lie on the ground & make a snow angel, I just like walking around in it, hearing that creaky-crunchy sound.

I love that you don’t know how deep the snow is and don’t know how far your foot is going to go in (my husband thinks I’m silly for wanting to take a ruler out with me to measure the depth, but I can’t resist having the ‘my snow’s deeper than your snow’ competition with anyone who will play). I get even more excited when new snow builds up upon old. That on the second day I can wake up to fresher, deeper, crunchier snow and walk the same roads with the same (maybe a little more) excitement and crunch as the first day.

Snow always reminds me of Psalm 51:7 ‘Cleanse me with hyssop, and I will be clean; wash me, and I will be whiter than snow’. I always find it amazing, humbling when I remember that the almighty God thought I was worth sending His only son to suffer an excruciatingly painful, humiliating death so that I could be whiter than snow. Slate wiped clean. A new beginning.

But this picture has made me think a lot recently and question my use of the ‘whiter than snow’ verse that we pray so often. Do I really want to pray that verse over my life (or others?) Do I need to be careful exactly what I’m praying for? When I actually look at what I’ve been asking for it suddenly doesn’t seem as attractive. I think I’ve often used it in a ‘prayer for forgiveness’ context. That because God has forgiven, I am now whiter than snow. This is an amazing, wonderful gift. Snow is a beautiful pure thing, but when it melts you’re still left with the dirty pavement below. When I forget the blessing of forgiveness and go back to things from the past, what am I left with, the dirty pavement?

When I am hurting, when I am struggling with God because He doesn’t seem to be answering my prayers in the way *I* want, what if He is actually just digging up the pavement? Going deeper. Removing the dirt. So when the snow starts to melt there’s something new, more of Him, more white snow beneath? What if in the times of pain and tears He is ripping things out to lay a foundation of white snow? No matter how hard, no matter how painful the pavement is to let go of, surely a foundation that is as white as snow will be infinitely better than what was there before?

I get that because He died I am saved. The slate is wiped clean. I’m as white as snow. But what if I’m still clinging onto the pavement? What happens when the snow starts to melt?

‘See, I have written your name on the palms of my hands.’ Isaiah 49:16