I hate waiting for things. It’s not that I’m inherently impatient (although my husband will say otherwise!), but once something has been decided, or planned, I just want to do it, good or bad. I’m a ‘come on lets get going’ kind of person. My pleasure, or relief, comes from taking action, not from the anticipatory build up.
When you have a long term health problem like multiple sclerosis, the waiting can sometimes be as tortuous as the condition itself! And I seem to have done a lot of waiting over the last couple of years – waiting for bits of my body to start working again, for test results to make decisions, or for action to be taken on the decisions that have been made. What’s most frustrating is that having worked in intensive care for a number of years, I know most these results can be rapidly produced, it’s the system and work load that makes it all so slow.
I’m in limbo again at the moment, waiting to hear about my latest MRI. There is a slow but undeniably real assault on my nervous system that impacts on my every day life, physically and emotionally. When the time comes, I want to be a hands-on granny (I love to play!) and that time is a fair way off yet – hopefully – as my teens have a lot of living to do first. I’ve realised to achieve this aim, I need to be open to all treatment options, beside all the more natural things I do to manage this condition. No-one will let me hold the baby or leave me in charge of a toddler if my arms don’t work!
The problem with waiting is it’s so hard to plan. The waiting doesn’t just affect me, but my husband and family too. Making plans is difficult. Disease modifying treatments (DMTs) can be hard on the body, both from the direct effect on the immune system as well as side effects on other systems of the body. As with MS itself, everyone seems to respond differently to treatments too. I have tried one (tecfidera) but it made me too poorly, but not with the most common side effect, but then I always like to be different (guess I’ve always been a snowflake!)! I had to stop. The side effects were worse than the MS!
Until you start a treatment, there’s no way of knowing how you’re going to react – some medications have more serious effects than others. So we can’t book a holiday, as travel might be limited. My work plans are pulled back, as will I be able to host events? Invitations come through far in advance – can I go? For someone who likes structure and control, it’s another stress to add to an already over-stressed body!
But then the longer I go without knowing what’s going on, the more I can pretend that all is well! This waiting is teaching me to be patient. To enjoy the things I can do. To make the most of each good day I have, whilst taking each bad day easier. Doing things spontaneously makes a change, not having the next few months mapped out is refreshing and new (but not comfortable). It’s all part of my learning to accept that things have changed and so must I. MS is a new feature in the family, and as much as we don’t like it, it’s best to embrace the suck and move on, even if it’s more slowly than I’d like it to be!