It seems a bit strange to be writing this, but as we wave goodbye to #MS Week 2012, I figured that today would be good day to talk about one of my Multiple Sclerosis relapses. One of the things that I can reflect now is that upon diagnosis of MS, lots of information gets given to you, you consult your own GP aka Google and occasionally you venture and ask someone who act actually has MS for advice.
You walk away with loads of lists and leaflets of possible things that could go wrong and if you were like me (occasionally bricking it), that list will burn a hole in your brain.
I had enough of an issue accepting that my life had changed upon diagnosis; continuing poor health was not exactly endearing me to this. I was 100% totally and absolutely petrified. And alone.
Yes, there were lots of great family and friends around to offer me a shoulder but none of them had MS. I didn’t know any other single South Asian in fact that had MS. I was diagnosed 20th February 2001.
In the first year and half, I had too many relapses to even begin to make sense of. Having only had ’acute’ relapses up to this time, I was a frequent flyer in the Neurologist department and also had the Multiple Sclerosis Nurse on speed dial. To be honest by the middle of my second year, having spent so much time clutching walking sticks, bed pans and the remote to catch up on Murder She Wrote, I had kind of thought if it gets any worse, I’m screwed.
So here I am second year into illness and having previously lost my eyesight (optic neuritis) for a short while, loss of balance, fatigue and then the big paralysed neck down for a few months (complete sensory loss and motor function loss), I kind of thought it can’t get any worse, can it? Please let me explain.
I had been used to big fat juicy relapses that always required medical attention almost immediately, I would get my steroids (Methylprednisolone), go through the Hulk like experience of taking them, sprouting chin hairs like I was an extra for some hair transplant advert, putting on weight akin to a sumo wrestler and then do my best to get out of my elasticated pants and get back to work. I didn’t give up work throughout all this. That’s the Punjabi girl in me, stubborn as hell.
Here I was in a new job, travelling about all over the region and slowly but surely losing feelings in my toes. It was very slow in spreading. Having not had this kind of experience before where the loss was creeping up my legs in increments, it didn’t occur to me that the thing wasn’t going to stop no matter how many early nights I had.
I didn’t go to the MS nurse as I thought it wasn’t considered ‘bad enough’ to warrant a visit. So I sought alternative solutions to my problem. I was off sick by this time as I was struggling to walk at all, dragging my feet. I had tried massages, foot baths, and people standing on my legs applying gentle pressure, lying on the sofa with my legs upright against the wall. I bought naturopathic pills to improve my circulation; they tasted like flipping Hajmola1, leaving me with eau de fart trails. Gassing yourself because you can’t move away is not the way to go. Sexy.
I had had enough, was well and truly fed up and I was bored, oh boy was I bored. I’d gone off QVC, the card making shopping channel, I didn’t want to shop or eat chocolate or even jelly babies. I was officially depressed. Like the relapse, it had crept up on me, I didn’t read the signs or I chose to ignore it.
I had a call from a friend who told me about this guy who was considered really knowledgeable in alternative therapy/medicines. The more and more he said the more and more I liked what I was hearing. He’d done some amazing stuff for other people so could evidently be trusted, what had I to lose? Money? No, he didn’t charge for his ‘services’, he did it for the love. Hmm.
Anyway calls were made, consultations happened and a prognosis/treatment plan was offered. Chapattis, hot fluffy steamy chapattis. No he wasn’t buying me dinner, that was his treatment plan.
I laughed it off for the first few days, and then as the reality of my relapse kicked in alongside the distinct lack of options, I did it.
Me laying on the sofa in my chaddies and a jumper watching my mum wave hot chapattis about cooling them down before they got wrapped around both my legs, whole legs. I was then cling filmed. Yes in my depressed state of mind, with a ‘try anything once’ attitude, I was wearing the pre-Lady Gaga food costume of hot rotis…I kid you not. I was moving about like an extra from ‘Mummy’.
Never underestimate the lengths that poorly people will go to, to get relief. Even the sanest of us have succumbed.
1.Hajmola is an alternative Ayurvedic supplement consumed by millions of Indian around the world. Check this link out http://www.stuffindianslike.com/2008/04/8-hajmola.html