Things Aren't Always What they Seem

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On the last day of MS Awareness Week, I wrote a heartfelt post to friends and family on Facebook. I thought I would share it for those going through this, so you don't feel alone, and to those who don't have MS, so you better understand those of us that do. I recognise MS is confusing and our actions may not always demonstrate all of what's going on below the surface. Hopefully, the post below sheds some light on why:

I thought I would share my personal experience of MS, which has been challenging over the last 9 months.

Whilst there has been pain in two of my relapses (I've had 4 in 13 years which is amazing), in these last 9 months I have never experienced pain in such intensity and duration, such invasive testing or so much medication.

I take 5 sets of meds, which I have to carefully manage. I also have to constantly challenge myself in all of my daily activities to ensure my ridiculous levels of fatigue (see blog below) don't spiral out of control. I don't think anyone, with the exception of my husband and son, has really seen the effects of this fatigue which mostly hits toward the end of the day - difficulty in word-finding, slurring words and falling asleep as soon as I get home from a working day; all utterly frustrating for any mildly intelligent and once energetic human being. I've never before doubled over in meetings or cried over pain (I had a natural childbirth for goodness sake, what?!). I can't walk as far as I used to and stairs, well, they really hate me!

The pics show part of the reality: hospital visits once a fortnight at the moment to work out what causes the stomach cramps, blurred vision, an arm that now (mostly) behaves under medication and the side effects of one med, which causes 'flushing' (I resemble a lobster), which at best is embarrassing and at worst feels like I'm on fire and is uncomfortable. Currently, I feel under attack almost every day. Doctors suspect I'm in relapse.

I am generally a happy and gregarious person, very conscious of being seen as capable but also of not being a Moaning Minnie. So I have a tendency of downplaying the symptoms. If you've asked me how I am in the last 9 months, you've received "I'm fine", not because I'm trying to deceive but because the energy put into explaining symptoms is counter-productive and because it's a fine balance between raising awareness of MS and it being all people can see when they think of you. I'm also trying to wrap my own head around it all, so please forgive me if I don't call or go out as much.

Why am I telling you all of this?

If I post pictures, like selfies or afternoon tea, I'm probably confusing you. But what I'm really doing is celebrating and relishing my good days, where tantalisingly I feel like me. It doesn't last long, which is where all the relishing comes in! Frustratingly - and importantly - however, I look exactly the same on my bad days. This post is not to glean pity but to explain what I cant always articulate in person. So, I wanted you to know that a) I'm very resilient, I adapt well, and b) I've never before been so challenged so to please bear with me as I get my head round this and if I seem a little different, I promise I'm not, I just have new invisible crap to deal with. I also have to carefully choose what I get involved with. Even if it doesn't make sense to you, it has been strategically thought through to the nth degree.

Please become more acquainted with MS. I appreciate it's weird and a bit scary, but deepening your understanding will help strengthen your appreciation of non visible conditions, and what people like me have to do every day to look like you.

If you have enjoyed reading my blog and would like to be notified of new posts and information from other organisations, please follow me at https://www.facebook.com/myMSbullyandme

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