It’s been a while. Not even sure if anyone is even out there…
In May it will be one year since my first ‘Big’ episode. I cannot believe all of what has happened in such a short space of time. How much my life has changed/not changed. So where am I? Well. I guess technically I am well. And to most around me I am, well. As anyone reading this with MS knows you couldn’t possibly tell your loved ones about every nebulous, slightly scary sensory ‘symptom’ you have… I tend to quietly freak out about it before mentioning it to my significant other. I need to be sure a) it’s really happening, b) it’s related to the MS and c) already have a solution/reassurance ready for them. Of course, when I was first unwell and pretty much steadily until diagnosis I did share more – cos I was terrified. Now it feels the same but different.
I wonder if people out there, with MS remember this first year… I have a feeling you might!!? Its supposed to be most difficult year; so I am told. Adjusting. Accepting. Working it out. While riding the wave of random symptoms and lots of pennies dropping (“so that’s what the exhaustion/tingling/sore skin was…!”) . What I have struggled with most recently is knowing when to be worried. And when what I am experiencing is *just par for the course*. So. Recently I have been getting wierd stuff happening with my hand. And in the last few days my eye. Its always when I wake. Having never really had a conversation with a *real* (as oppose) to an online person about MS symptoms I am left unsure about how worried I should be. SHIT! Do I need ot start medicaiton? what is my body telling me? Is this normal? Is this what it’s like to have MS – chugging along and then you get wierd stuff happening to you randomly..? I frantically dial my MS Nurse (who I have neve rmet). She assures me this is, yes, par for the course. She’s sympathetic. Nice. I feel a bit calmer but sad 😦
I would love to hear peoples thoughts on this. It scares me. Mainly ‘cos it challenges my belief that I am going to be one of the well ones. Benign. Symptoms contradict that… I try and take reassurance that often improvements attributed to the diet and regime I am following can take several years. Perhaps I am living the improvements right now? Perhaps things would be worse for me if I hadn’t made the drastic changes I did. I take reassurance in the fact I am approaching 1 year without a major ‘relapse’. I take heart in the fact that already this diagnosis has given me many positive lessons, about myself and others. About peoples strength and their kindness.