Lemtrada: Getting Prepared for Hospital
This is it. Hospital for a week.
It's a daunting prospect that you're about to have your white blood cells destroyed, in an attempt that they will regenerate to their former levels. Coupled with this deliberate act of self annihilation, all on the proviso that it is the most appropriate severity of treatment for your given situation, is the plain reality of being in a hospital bed for a week. Depending on what hospital you're being admitted to, you will receive a lot of "checking in" type information.
In a nutshell, you're in a vacuum for your stay. Things from home are generally not permitted, makes sense. This is how hospitals control and prevent disease and regulate the comings and goings. There are some things to get right, and some other things to not worry about too much. I'll take you through some things I've learnt from my stays staying in a hospital.
When it comes to what to pack, cotton cotton cotton.
Be sure to bring with you pyjamas or house clothes, with enough for a fresh set each day. Lightweight cotton pants and lightweight cotton long-sleeved shirt are the ideal. Then a cardigan/ zip up jumper. Chances are you'll have to show up to a dozen people your stomach, reason for this is on Lemtrada, the reality is an angry rash is inevitable. Speaking form first hand experience, bright red rings on your body, as ugly and depressing as they are, are not rings of inflammation on your brain, or blood droplets on your lungs. So trust me - its horrible, uncomfortable and honestly - depressing. But if you're angry and upset, this means your cognisant of your surroundings and that ultimately, you're still breathing. So being angry and uncomfortable in our space - it's a win. What you can do to make this easier on yourself, is have pants and a long sleeved shirt on. Not having the constant reminder of this angriness on your skin is a good thing. Hide that shit away.
Also. so you don't also have to show the whole ward your knickers like I did. Again, knicker sighting is trivial, nurses will have 100% seen so much worse, a 30-something year old girl in her knickers is probably something any nurse wishes that is all they had to deal with. Given the chap down the hall is incontinent, you and your cotton-tails are a god send for them.
But, when your'e already feeling vulnerable and exposed, being able to protect your knickers, it's a thing. Trust me, pants and a shirt will reserve whatever shred of dignity you could possibly cling to.
So enough cotton pants and enough cotton shirts for a set each day. Reason to change each day, is most probably you will you start off on a dosage of Methylprednisolone (steroids). You'll get hot, sweaty and clammy. You want fresh cotton each day.
A few cardigans and or zip up jumpers are a good idea too. Reason for this is once you have had your cannula put in, it's impossible to get anything over your head without a big drama. You can wait until the ~4hrs has passed and the drip bag is disconnected, or just put on a jumper that has a zip or buttons so you can take it off when you want. Its likely you'll get hot (steroids) then cool off. You will want the option to add or subtract layers. Don't do what I did and leave a wool turtle neck on.... Wool is also the itchiest fabric in the world so don't brig with you anything wool. Your rash will thank you for leaving wool at home.
Toiletries-wise, you wont have much energy to be faffing around in the bathroom like you would at home. It's likely your skin will be angry and irritated too, so keep it simple. A hydrating spray that you know agrees with your skin, some dry shampoo and a very nourishing moisturiser is really all you need. If you're on the vain side of life, get your eyelashes tinted and your eyebrows done before hospital, that way you might still feel like you're looking your best, if that is important to you.
When it comes to visitors, you will feel lonely. Don't make people stay away, but be cautious about over doing it. Parents and partners are the key here. You'll get grizzly and irritable, and its hard work being polite and making small talk. Theres a magic mix of loved ones that will work for you - for me I know its my mum and my husband. Mum, because she's seen me behave worse. After all I was a teenager at one stage and we made it through that. And my husband, because your forever partner is accepting of what's happening to you and generally sees the bigger picture. A week of you being a cranky troll, is a week of you being. It's useful to remember steroids make you loopy. And if you're anything like me, you'll hate yourself on them. So what might happen is that you then get down about how much a stroppy cow you're being too. Again, another reason why you should limit your visitors to a few trusted ones who you've had frequent strops at before. You're a cranky toll? Standard. No one gets dished anything they haven't seem before.
Passing the days will be remarkably easy. You'll be very drowsy and in reality, sleeping most of the time. An iPad and Netfilx and/ or a book and you're home and hosed. Or most hospital rooms have TV so if you don't have an iPad no worries, the tele is just as mind-numbing. One distinct advantage of an iPad, is you can put your earphones in and then your visitors feel less inclined to talk at you. More often than not people visiting will feel pretty awkward, rooms although might be large, are full of equipment and furniture. Coupled with your irritable mood - no one can ever be in a spot that is not in the way. If you plug yourself in to your earphones, everyone feels much more relaxed. I find it hard keeping track of all the conversation points so frequently opt for the old "I think i might watch a movie now" move. And calm usually settles across the room.
The absolute most important piece of advice I can give you, is don't set any rules or make any promises about how you will, or how you wont be. One day at a time. All the best plans and notions of what your week is going to look like, might never happen. Each round of observations, dose of pills, steroids, lemtrada. Each one as they come. At any of of these occasions things might change. And thats ok. The first year I had complications. They were dealt with. The second year it was a lot easier. Its likely this will be your experience too. You are in hospital for around the clock care, because you will need it. All of which the nurses and your neurologist know how to deal with. You are in hospital, in very good hands so let the professionals worry about you. You focus on what you'd like to read or watch next, and what your mum can get you form the cafeteria down stairs. People want you to be comfortable and cared for, let them by you green juices, bran muffins and coconut yoghurt all week, you will love it. And be happy they care enough to bring you your favorites each morning xx