In March 2014, I was diagnosed with Relapsing Remitting Multiple Sclerosis (RRMS). This means that my MS has periods of being very active and causing a relapse where new symptoms start or symptoms get worse. Usually, a course of steroids help and things get back to normal for a while.
In December 2014, my neurologist told me that my RRMS was aggressive (I know! Me?! Aggressive?!! Never!) and I’d had 3 relapses in 9 months which is quite a lot. To try and slow things down, we decided to try a course of Disease Modifying Drugs (DMD’s) which are designed to reduce the number of relapses. With less relapses it’s hoped that I can get stronger in between them.
The DMD of choice for me is Tysabri. It’s an infusion that I have to go to hospital for every 28 days. They just pop a cannula in your arm (or attempt to use your hand twice before they give up as per this photo) and you sit there and read your book, drink coffee and chat for the next hour and a half. It gives me a hot rash and makes me incredibly itchy, mainly on my scalp, but a simple Piriton tablet deals with that.
And that’s all there is to it. I get very tired for 2 or 3 days afterwards but then I have 2 or 3 weeks of increased energy and my brain becomes a lot clearer and I can think clearly and try and plan things. A week or so before my next infusion is due I get very run down and tired and the whole cycle happens again. My next infusion is next Tuesday and so far this year, I have had no relapses.
So where do the unicorns come into it? Blame my mother! This was our text conversation:
As you can see, my Mum is full of sympathy and pity for me. So each month, I have this infusion and hope that I will one day become a unicorn with a mane of rainbow hair and sparkles. So far, it’s not looking great but I live in hope!
Always be yourself unless you can be a Unicorn. Then always be a Unicorn!
A few things have happened and caught my attention lately that have made me think about relationships.
I have recently been given a new status. That of being disabled. A word which I hate with a passion as I think I am very able thank you very much. I just need help here and there with a few things. This recent status change has led to lots of form filling and lots of questions. All of which focus on the negative. What I CAN’T do. Which totally goes against the grain of my mindset as I prefer to focus on what I CAN do. Can I get dressed without help? Yes, as long as life can cope with me in clothes without buttons or zips, or even if pyjamas were acceptable in coffee shops. Can I cook without help? Yes, although the scars on my hand tell me I probably should really stay away from hot things. Can I use my insulin pump without help? Yes, but it takes me five times as long and I regularly manage to empty a vial of insulin over the kitchen floor. So maybe I do need a bit of help to make life a little bit safer and easier. Step up to the mark Mr E!
Me and Mr E married in September 2009. The left side of my face dropped in December 2009 and there began years of problems resulting in my diagnosis of aggressive RRMS (Relapsing Remitting Multiple Sclerosis) which is the main reason for my ‘disabled’ status. Poor Mr E did not sign up for this! But he has stood by me and learned to step in when it’s needed and to help out. Which leads me to the question, at what point does your partner become your carer? A lot of these forms have asked me who my carer is. I always reply that I don’t have one, just a very supportive husband. But should I get some help in the house and in the kitchen? Would that allow Mr E to remain a husband without the added responsibility, or burden, of being a carer too?
A recent tweetchat was about ‘diabetes and dating’ which made me very thankful to be in a relationship! Dating is a minefield! Let alone with any disability or LTC (Long Term Condition). When I was single I never thought that men would look at me twice, I think they would now, but only to try to work out if I was drunk or not! Hidden disabilities are so difficult. I either look drunk or clumsy. Although to be fair, I may actually be drunk… How do you date with these added issues? Do you pretend they aren’t happening? Do you explain things straight away? Do you set your date a test and monitor his or her reaction when you whip your blood testing meter out? This week I read a tweet asking if there were any dating sites for those with disabilities or LTC’s. Why should there be a separate one? Perhaps because most ‘normal’ people just don’t get it. Those of us in relationships or who are of a certain age (I’m not divulging mine but my son calls me a fossil) are more chilled and offer advice like ‘find the one who accepts you as you are’. Easier said than done. You have to get through all the awkwardness first and to kiss a fair few frogs before you find ‘the one’.
It’s not just relationships with partners that I’ve been thinking about. In March I will be going to the PWD conference where I will be meeting lots of twitter folk. I ‘met’ these twitter folk when I was fairly well and a lot have followed my progress through the tricky terrain of diagnosis and treatment. To be able to last the whole day, I may have to use my wheelchair. Will that chair change how people relate to me? Will people see past it and realise I am still ditzy Jules…with wheels? I think they will as they know my story. But what about old friends? If they see me in my chair will things change? Will they be too embarrassed to ask about it? Will they not be interested and not ask for fear of being bored? Will they assume I don’t want to be part of ‘girls night’ anymore? Will they just say ‘nice wheels’ and carry on as before?
I think that sometimes it is best not to think too much about these things. Relationships are two-way. If I am worrying about reactions etc, those reactions will be based on the signals I’m giving off. I need to accept help and be grateful for it. Although I feel like a burden and a let down to Mr E, should he ever be in my position, I would of course stand by him and support and help him. Relationships are tricky at the best of times. Accepting ourselves and our situation, whatever that may be, is the first step.