Next up in my ’10’ series – 10 Questions.
Back in the early days of my MS I used to turn up to appointments armed with a list of questions. Sometimes these lists would be typed up, but at other times they would be hastily scribbled down on a scrap of paper. I still have every one of those lists; the archivist in me is constantly aware of the importance of record keeping for reasons both practical and historical.
The anxiety that I felt at the time of my diagnosis has faded significantly during the intervening decade, however, those thoughts and feelings are vividly brought back to life through my list of questions, revealing a true insight into the mind of someone NEW to this.
1) My first ever list, presented to my Neuro Nurse on 24th September 2010, just a fortnight after my diagnosis, begins rather blandly with, “Do extreme temps make it worse?” Sixteen questions later I ask, simply, “Children?”
This question was perhaps the one that I was most scared to ask, which is probably why it ended up at the bottom of my list. It’s hard for me to imagine that I was ever worried about MS preventing me from having children, after all, I’ve gone on to have 3. But I’m reminded about all that uncertainty when I see that simple word written there. Hidden within that one word are a thousand different questions. COULD I have children? Was it SAFE to have children? Was it FAIR to have children? Would I be able to COPE with children? Would medication get in the way? Would I be too TIRED? How could I look after children if I couldn’t even look after myself? And on it goes.
2) “How can I walk more? How do I get to the stage where I can walk for a long time?” This next question first appeared on my list dated 14th January 2011, but has appeared in various guises on almost all of my lists since. The reason being that I have never, even now, been able to accept the answer.
In an email to my nurse 3 months later I wrote, “It’s soooo frustrating not being able to walk for long or do much without overdoing it. I think it’s gonna take a long time to get used to this!” And, later still, “..am really struggling to walk – gggggrrrrrr.”
Loss of mobility has been one of the hardest symptoms for me to deal with and I don’t think I’ll ever get used to my stupid limitations. I reckon we can safely say I have a rather severe case of Perpetual Denial when it comes to walking.
3) This next one made me chuckle. In March 2011 I had been put in touch with another woman who had MS and who knew a group of women of the same age who also had it. While this filled me with hope and helped me enormously to deal with the loneliness that comes from such a diagnosis, I was desperate to find some men who had it. After all, I’ve always found that I have a better rapport with men. So, what was the question on my list?
“Any others? Male?”
Of course, I’ve since met countless men who have MS – they do exist.
4) By May 2011 I was finally in talks with my ‘team’ about starting treatment (things moved a bit slower back then!) I’d forgotten just how terrified I was about going on a DMD (Disease Modifying Drug) but my long list of questions reveal a very anxious (and slightly neurotic) patient.
Prior to starting the monthly infusions of Tysabri (the only drug option my neurologist would consider for me, for which I am so thankful!) I felt like I was “taking a gamble with my life”. My many questions included, “What are the risks and benefits?” “Is there a blood test available to check safety in taking it / check for infection?” “What is the exact process involved?” “Will it make me more susceptible to catching things because it plays with immune system?” “How long does it take to kick in? Are there side effects?” “Will it alleviate any of my daily symptoms?” “Does the fact that I qualify for Tysabri mean that my MS is considered severe?” “Will it hurt?” …
It’s an exhausting list of worries!
5) “Will I be able to drive?” A question from those early days. At the time of diagnosis I hadn’t driven a car for several months and didn’t actually own a car. In fact, it took a lot of courage to get back into driving since I had been suffering pretty badly with optic neuritis and couldn’t trust my vision. Added to this was the stress of having numb feet. How can you drive if you can’t even feel the pedals?? Let’s just say it’s a jolly strange sensation, but one I got used to pretty quick.
6) It’s not always easy to admit that you are struggling mentally and I am so glad that I found the courage to ask the following question, “Is there any counselling on offer?” This is probably something that a patient shouldn’t have to bring up themselves – for someone who is going through a life changing diagnosis it really should be offered as standard.
7) “Will there ever be a cure?” I seem to have asked this question on more than a few occasions at the beginning of my ‘journey’ but I clearly tired of asking it as I gradually came to accept that any ‘cure’ would certainly not be in the foreseeable. Still, there are lots of promising developments being made with various new drugs and stem cell treatments…
8) “What is a relapse?”
I still can’t fathom this one out.
9) When I was given steroids for the first time I was clearly terrified: “Will steroids help my balance, walking or any other symptoms?” “Will steroids have any dangerous side effects if I went on Tysabri?” “Will I be ill with them? Will it interfere with my week’s plans?” (!) “What are common side effects?” “How do I get them?”
The answer to all of the above? “Take a week off work and rest”.
Which, of course, I didn’t do.
10) I almost can’t bear to look at this last question – it’s too distressing.
Oh well, here goes:
“The pain and numbness in my feet hasn’t let up in months, can I expect it to ease?”