Friday, 19 December 2014


I've been meaning to update for a while, but just haven't got round to it, so sorry about that!

Things are going fairly well really. I'm actually on the train to home-home from uni-home at the moment. Excited to have made it through my first ever uni term major-relapse-free! I've barely missed anything (*proud face*), but admittedly I have been part-time this term. I'm even more excited by the prospect of time-off though. It's certainly needed!!!

The beginning of my first term back after medical leave was undeniably incredibly difficult and pushed me absolutely to the limits of (and at times way beyond) what I could cope with physically. I survived though, my ability to flare without massively relapsing reassured me somewhat, and I was incredibly lucky that my body managed to make some improvements and over time fought back less, which is an absolute first! The middle of the term things seemed manageable, and I'd even got marginally beyond prefixing manageable with 'only just'. Just as things were starting to feel doable and I was feeling a bit more reassured and a bit less fearful of a relapse (and less haunted by the memories of how bad relapses can get), things started getting harder.

Towards the end of term, I had a really challenging few weeks, feeling like my body was flagging significantly, and feeling in need of a break! My speech in particular has been really difficult at times, and I've had days where basically every sentence has been a struggle. I find that pretty difficult, because I used to be relatively eloquent and prided myself on my ability to argue a point well; now I get people who see me stammering excessively and fighting with my words who presume I'm mentally incompetent and that's very difficult when the words are in there trying hard to get out! I'm using hand gestures and non-verbal communication a lot recently to try to get me through. I've never been so grateful for my ability to nod, shake my head, point and do a thumbs up and thumbs down, my heart absolutely drops less often now, because I know I will find a way to communicate even if it's not neatly, efficiently and the way I'd like. My second (most recent) speech therapy session was really helpful and I've learnt a few techniques to help me speak a bit more fluently and they do help, but they don't yet come at all naturally. I do feel a bit more in control though and less panicked now that I have some techniques to turn to as needed. People are generally fairly understanding/considerate about my speech difficulties, but unfortunately not everyone is. Some outright laugh, some smile in an amused way, some presume you're totally thick (particularly as I'm visibly physically disabled), some look panicked and/or perplexed, but most people are more concerned about reassuring me that it's ok (which it might be ok for them, but I'm not ok with it) and are patient and encouraging. Negative reactions are difficult, but mostly people have been great- my friends have been amazing with it, not batting an eyelid at all (I do have pretty awesome friends).

The other thing I've been having massive problems with very recently is headaches. They have been utterly awful, practically unbearable at times. I've spent the last few days speaking with various people trying to get them sorted and under control before leaving the area for a couple of weeks. I was quick to blame my newest medication- Fludrocortisone- and stopped that [edit to add: I did check with my doctor that it was safe to do so, and it was as I have only recently started on it]. 3 and a half days after stopping it the pain has lessened somewhat. I do still have a headache though and my facial pain is not as well controlled as usual. It's hard to prise things apart when things get so complicated. They thought the new medication might have caused my blood pressure to sky-rocket and that was the cause of the headache, but when tested it was still only 108/45, so on the low side if anything. The next suggestion was that I might have had a change in my glasses prescription, so I went for an eye test today (on my birthday!) to rule that out- there has been a change in my prescription but not significant enough to be causing severe headaches, thankfully all looking healthy except dry eyes though. So the mystery still isn't yet solved really. I'm thinking it's either the medication and it's taking a while to get completely out of my system, or it's my facial pain. I had already been considering changing my facial pain medication again, but I'd been hoping to not have to go through that too soon, but if it doesn't settle I think that'll have to be the next line of action.

The medication I mentioned stopping- Fludrocortisone- was intended to help my Neurally Mediated Hypotension and stop me going faint; it was hoped that this would help my other symptoms too. It possibly did help with my lightheadedness, but it has also made me feel more rough and tired than normal I think. I certainly haven't felt significantly better on it, so it wasn't overly disappointing to have to stop it, apart from in the respect that I had expected great things from it, which didn't happen.. Maybe there will be other things to try which will suit me better.

I've also started melatonin since last updating on here, and that was a really, really good decision. It helped massively with my sleep, shifting my sleep pattern significantly in the right direction. It also helped me feel a bit better during the day (because I've actually had some sleep), nights are less frustrating and days are longer and more productive, so all good! I wish I had tried it sooner, but it wasn't one of my top priorities to discuss with my consultant until I was wanting to get back into lectures, and that wasn't going to happen without a shift in my sleep pattern. I haven't had any real side effects from it at all (it's naturally occurring in the body anyway, so it's less likely to cause side effects than most meds to help with sleep); the only slight side effect I had was feeling a bit overheated after taking it- even that has settled down though.

I'm feeling in a good place mentally right now, a bit weird about the passing of time with it being my sixth birthday and Christmas ill, my fifth of each with a diagnosis, but mostly I'm just enjoying and looking forward to spending the time with friends and family. I'm delighted with how far I've come and feeling quite at ease with life really. Yes, I still have constant symptoms, some of them are out of control at the moment, and life is quite a challenge, but I'm so lucky to have amazing people around me, and I'm incredibly lucky to have clawed my way back from the depths of severe illness (even if I have only got as far as moderate- next stop mild please!).

As we reach the end of the year, I'm not sure what to make of 2014. It's been a year of absolute highs and lows. I've had months of illness of a severity I could never have accurately imagined until it happened. I've faced devastation when I had to take time out from uni, further devastation when I relapsed even further soon after, months where I was challenged continuously physically and emotionally, but also the absolute high of starting back at uni, being back with my friends and returning to some vague sort of 'normality' (if there is such a thing), and other happy, enjoyable events throughout the year. This time last year I knew I was in for a very difficult year as my body was an absolute wreck; this year I'm not sure what to expect- I'm hoping things will go smoothly as I transition from part-time back to full-time studies, but I'm also aware that I'm still very ill and things could fall apart at any point. I know that full-time studying may not be very compatible with my state of (lack of) health, but I won't know without giving it a good try. I will be very glad to put 2014, along with its difficult memories, behind me, and I'm looking forward to a fun-filled and rest-filled festive season!

Wishing everyone a fantastic Christmas time and hoping 2015 is a great year for you all!