I went to see the Verve in the 90’s. For anyone who remembers that song, I think they were the band of that decade (sure I’ll get some Oasis, Blur feedback). My boyfriend and I at the time were students. We stood in a Wigan field (that’s where they were from), the sky was filled with purple dry ice and I thought I was in heaven when I heard the song “the drugs don’t work”. Fast forward to now and that song title still has memories of purple haze but is more about me, my MS, and not the 90’s pop group. Ok, so it probably wasn’t about MS treatment but the lyric “the drugs don’t work, they just make you worse” rings true.
Since others have heard I’ve got MS, there has been lots of talk about taking a magic cure. Believe me, if someone said Smarties would work, I would down them now. Little man probably wouldn’t be very happy, although his guilty pleasure like mummy’s, is giant chocolate buttons.
MS drugs are either to help with the relapse you’ve had (steroids), your MS symptoms (e.g. fatigue) or to help reduce future relapses (disease modifying drugs/DMDs). The first mention of DMD’s was not long after I got diagnosed. The belief is, the sooner you start on treatment, the better. I’ve been reading “Higgy”. I know nothing about cricket or rugby but as a top player of both (did I mention he has MS?), his chapter on drugs was spot on. You take a pill for a headache (“no one is forcing you”! said my helpful neurologist about taking DMD’s), but we are conditioned to know what to do and how it works. Sadly for MS, it’s not like that. You aren’t conditioned about what to do. There are far less of us diagnosed in the whole of the UK than the population within my home town. So I get why everyone doesn’t know what to advise, what is best, the answer is, simply we don’t know what works for everyone. There is no cure for MS. Maybe in my lifetime, I might see a cure. There is research but as human guinea pigs, MS treatment will only been seen as working when we fast forward in time. Don’t get me wrong, there are far more options today than yesterday. You probably got greeted with a pity smile yesterday where as today you may still get that plus a bombardment of information. Blooming leaflets. Read this on the internet. Reading research papers. Just “think about it” was what I got mostly told. But aside from knowing you have this condition, how it was going to affect you and the others around you, you have to think about what treatment to take. It’s not as simple as “I’ve got a headache, so I’ll pop a paracetamol”. Most likely because taking any treatment for MS is scary. Just read the bumph on side effects and you can convince yourself “is this sh&t worth it?”.
Plus there is also the other sh&t you hear about. “I can make some special cookies” with it in. Cannabis, I’m talking about, is supposed to help ease MS symptoms. But like Higgy, I’ve been brought up to believe taking the “magic cookies” is against my better judgement.
I started reading leaflets, going on MS websites (the #MStrust, #MSdecisions, has a good tool) and read several research papers (they are long!). I’m not hear to have a go at treatments. Everyone is different. Some work for some, other treatments are evil for others. These are just my experiences. My attitude to taking them is the same “what have I got to lose (my hair, my bowels for a start!) but I’ll give them a go. The first drug I took was an injectable. You stick a needle in every day, you want to know is the pain worth it? Nearly three weeks in, I knew it was working as wound up on a stretcher, going in an ambulance and seemed to experience every side effect going. Scary sh&t! I suppose that was my way of knowing it was affecting me. So I came off the treatment and gave my body a break ( which my tummy and thighs were probably pleased about). I had to inject myself and rotate the sights so I didn’t get inflammation build up. This is from the girl who can’t watch Casualty as she hates anything to do with pain like piercing of skin!
My body had a break (treatment anyway) as I later fell pregnant with little man and had that to contend with hormones and no soft cheese. Fast forward to when little man was just learning to sit up and the treatment talk started again. I read lots. Having a baby and reacting to my first treatment maybe put a cautious spin on things. I wanted to know the bad stuff first.
Since having little man, an oral treatment has been licensed for MS. Surely taking a tablet was far easier than sticking an injection into you everyday? Psychologically it was for me. But I’ve had lots of side effects. Paracetamol does have side effects but I’d never ever read the leaflet! Suddenly, I was learning lots about drugs. Last September, I was so ill with gastro pain and (I’ll call them, you can probably guess!) bathroom issues. I came off the treatment. The only silver lining was losing nine pounds in five days. What a diet! But seriously, is any treatment worth this rubbish quality of life? A question I asked my MS nurse. I gave my body a break. I’m building up the dose and fingers crossed. Last night I again wasn’t well. You play by the rules, try different foods with the pills but it just happens, there is probably no pattern.
So what are my tips to start any treatment:
Its personal No one can make that decision, only you. The #MS Trust have some great tips. The first one “consider what is important to you” is the most prevalent for me. As little man’s mummy, whatever I took had to not interfere with me, but especially him. If it does, go to point three.
Good and bad stuff It’s important to weigh the good and bad points of any treatment. If your personality (like mine) is to be informed, read, analyse, do it but don’t be bombarded with information, go with your gut instinct. My other tip is to get information from the horses mouth. I joined Facebook groups and asked those who are taking the drug. The official literature is worth reading, but remember it is marketing material so will be written in rosey language.
Support If the brown stuff hits the fan (clogs it in my case), have physical and emotional backup. I also supported me by being kind to myself and making sure my head was in the right headspace, what I mean, was I gave myself a good talking too, ate chocolate and took baths (I knew they might not help my waistline or my heat fuelled MS, but they helped me feeling better).
Is it the right time? I left starting the DMD until little man was older. This was deliberate. I had so much to deal with being a new mummy. It had to be the right time. I also had to think about what delaying treatment might mean.
No treatment When the brown stuff hits the fan, I also thought what not taking DMD’s meant (no side effects for a start!). I think the big thing for me to help decide to carry on were two key questions, could I live with the effects and was my MS progressing? It’s early days for this new treatment, I’m taking it slow but I know my MS is progressing, so I’ve got an attitude to carry on. I know it’s not as easy for everyone.
Do what feels right for you. Remember everyone is different.
#MS. #MSTrust #DMD #MSsociety #verve #mummy #higgy