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Thursday, 31 May 2012

Levelling out...or something

I like to try and write regularly, hence this post, as I didn't have a particular idea in mind, I thought I'd just write.

I think I've come a long way since my "I'm-so-fu*king-angry-at-every-thing-and-everyone-and-everything-can-just-sod-off" post (yes, I am aware that sentence is a nightmare, it's for dramatic effect...although it is a bit drawn out...so misses the point...so does this explanation...yeah).

The fun part of the roller-coaster is best how I can describe life right now. In the 5 years of not knowing, I became more withdrawn, and quite laid back. Whereas before I had a temper on me, ranted more (could you believe it), and voiced my opinions fairly regularly. Now I seem to becoming back to my old self a bit more, feeling a bit more fiery, and generally levelling out my emotions about my diagnosis. However, I have learned to bite my tongue and keep some of the laid back attitude I acquired.

Despite my first post regarding MS being generally positive (me finding a problem and trying to solve it), that was the denial phase, and I was putting up a front for others. I can actually say this with some certainty, I am more accepting of what's happened to me. It's "mild" in comparison to many other people with the disease, but I don't know where I stand (just like many past boyfriends).

Down points will happen, and do, but I have so many great people around me who don't focus on my health, they act like nothing's wrong, unless I need to talk about it. Friends and family, you can't take them for granted (yeah, getting soppy again).

Anyway, in reference to me being my old self, what trivial stuff can I find to moan about? Well, it's trivial, so for now, not worth me writing about, whereas a few years ago I would've done (I still hate the bus, and all the bunting everywhere for the Jubilee everywhere is getting annoying....but see, that is trivial).

Sorry for wasting 5 minutes of your life if you've taken the time to read this. I think I might have made up some kind of a point to this in the end...

Ciao,

Jo xx

Tuesday, 22 May 2012

The plug got pulled again...

I generally use that cliche term when my fatigue hits me. Another cliche is hitting a wall. For me, I feel like I have dodgy rechargeable batteries, that don't quite charge up properly.

For the past week or so, I've had a strange sensation, which was some actual energy (accompanied by some standard tiredness - I won't get off that lightly).

I dared to use some of that energy at the weekend, and when I was at work, it felt like the plug had been pulled or my batteries had run out of juice (a bit like my old HTC "smart" phone, which seemed to drain just sending a simple text message).

So then I found myself in bed, just needing to sleep...constantly...and believe me when I say I could sleep for England. Ugh... Despite this set-back, some other things have been improving - which I imagine is how it's going to be from now on: a roller-coaster full of uncertainties (a set back then maybe an improvement).

My short-term memory is pretty dire, but I can somehow remember something trivial that happened 4 years ago on a certain date. But, I'm happy to say that I can now remember little things which have happened recently, as well as not having to set a reminder on my phone for pretty much everything.

The latter made me feel like an 80 year old woman, now I feel perhaps I have a middle-aged memory (not great for someone of 25, but better nonetheless).

One thing I have noticed though, is how my speech has been affected since my last relapse - stumbling over my words like a drunk...even when I haven't been drinking (this may be a shock to some).

So, if anyone here knows me, if I take a while to say a sentence or get a word out, it's because I'm having to really think about each and every word (on the plus side, I'm not as likely to say something really stupid).

Just imagine a road that your words have to travel from your brain before you can say them, usually for most people, there's nothing blocking it. On my road, there are obstacles, so it takes longer for them to jump, and sometimes they get jumbled up.

Again, another dear diary blog. I'm trying to keep a diary of my experience, so this is it I'm afraid... Here's hoping a cure isn't far around the corner (along with that a cure for every other horrible life limiting disease...)

Sigh... xx

Monday, 7 May 2012

Limbo in it's mild form...supposedly

No matter how well you have your life planned out, or how healthy you are, you never know what's round the corner (something that I will no doubt reiterate in my blogs, as it's something I get reminded of on a regular basis!)

I hate not knowing and I am the kind of person who has to know now, and deal with the problem asap. But I'm slowly learning more patience (I used to have more, but talking to the public for 3 1/2 years, on and off, wore some of it down).

I can 99% confidently say I am now actually in remission, for which I'm happy for. I can now string a decent sentence together, remember what I ate for dinner last night, and my general relapse symptoms have buggered off. However, as my last relapse only finished in the Autumn, and this relapse bought about new symptoms (Optic Neuritis and a numb/shooting pain down my left side), I'm scared and apprehensive of when the next relapse will happen - essentially, I'm stuck in limbo.

Being stuck in limbo sucks, but I have to look at at positively: I am better for now, and if my last remission period was anything to go by, it could last for nearly six months (with the medication now settling down, this could be longer), then hopefully I should be healthy for a while.

I am now back in my positive mode, but still of course have my days where MS really pisses me off (if it was a person, it would get a good slap or two around the face).

My new doctor was really ignorant about it and said to me: "You don't look like you have MS." To which I replied: "How am I meant to look with MS then?!" He said: "Well, I'd expect you to be less able, and it seems it has affected you mildly."

My neurologist also sent me a copy of the letter he sent my GP, stating: "The lady has some facial paralysis, some slight tingling in her left upper and lower limbs - but otherwise her symptoms are mild." Mild? Sod off. Just because I'm not Primary or Secondary Progressive, it doesn't mean that this is mild. Mild would mean hardly noticeable in my world.

Two words I hate: Mild & Nice. Both are boring and are understatements (I also remember my English teacher hating the word "Nice", stating it was "Boring and Lazy.")

Anyway, before I carry on, Limbo is a bitch, but it could be worse. Life is unknown anyway, so essentially all life could be in limbo - whether you feel it or not...or something.

xoxo