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Posts Tagged ‘Brain Fog’

It’s a couple of days after my second Tocilizumab / RoActemra infusion and I feel exhausted – and I mean that really deep seated exhaustion that makes you feel too tired to even be lying down awake, the heart pounding, lung-crushing, head-spinning, soul-destroying exhaustion that comes with the fatigue element of chronic disease.

I can’t put my mind to anything; I’ve tried reading, watching a film, surfing the net, blogging…! To call it brain fog is an understatement; I literally can’t get my words together in my head and will probably have to redraft this at some point when I’m feeling better. Even reaching over to the bedside table for a pen to make a shopping list feels like a huge effort; in fact, I don’t think I can. So instead I will just lie here and play with my new Blackberry.

I’m pretty sure I felt like this last time too but thought nothing of it as we’d had such a long day. I hope it doesn’t last too long because fatigue is the element I find hardest to manage. I’ve probably said this before, but at least with pain you can get some relief from pain medication – there is nothing that helps fatigue and you have no choice but to let it dictate your day. The main reason I managed so well on Orencia was because it seemed to help the fatigue, if not the joints.

As well as the fatigue I have been feeling a bit queasy, but then I had been feeling that way prior to the infusion too, putting it down to the pain in my hips. I also have terrible skin and I know that happened last time because the red marks it left are only just starting to fade. I’ve never suffered with bad spots (apart from a pred-induced bout once) and now I feel like a spotty adolescent with Mount Vesuvius erupting on my chin. Last time it cleared up after the initial ‘infestation’ and I hope this time is the same. I asked a few pals who are also on Tocilizumab if they had experienced anything similar and they had, but thankfully only at the start of treatment.

I’m supposed to be popping in to my cousin’s little girl’s First Birthday later on this evening, so I need to get some energy from somewhere. Maybe (another) nap will help?

L

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It’s been almost a week since I doubled my Methotrexate dose from 7.5mg to 15mg.  I was expecting that maybe I’d feel a bit queasy again like I did when I first started it, or perhaps even worse, but I haven’t noticed any difference in that respect. Instead, I am just ever so sleepy! Even when I have been very unwell during this current flare, I have managed to stay awake all day – with the fatigue presenting as a body-wide weakness.  However, for the past few days, I have struggled to keep my eyes open once it gets to lunchtime and I just want to sleep. Trying to stay awake makes them burn and there’s no point anyway, because my brain just can’t focus on anything, which is why I haven’t managed to post as often on here.

Losing part of my day to sleep is bad enough but the ‘brain fog’ (as people call it), is even more frustrating. I’ve mentioned before how words just seem to drop out of my head and how I make silly mistakes like pouring water from the kettle over my cereal and find that I’ve put the milk away in the dishwasher… well yesterday it took a more worrying turn, when I forgot to switch the gas hob off and left it burning for about 4 hours before I noticed. Thankfully it remained lit or I could have had a major gas leak.

I’m hoping that the shock of forgetting something so vital will make me extra vigilant now, so that it won’t happen again. Also, that the ‘brain fog’ clears up after a time, as the nausea did.  But I can’t help but feel that the Methotrexate is having the opposite effect to what we hoped.  When I first started Orencia I felt like a different person, full of energy, even if the inflammation was still there; then I started on a small dose of Methotrexate and lost some of that energy and feel good factor; now, after doubling the Methotrexate,  I feel sapped of all energy. It makes me wonder how things would be if I stopped taking it and just had the Orencia – would I feel as good as I did at first?

I know it’s not the end of the world, but I’ve always said that fatigue is (most of the time) more difficult to deal with than pain – you can take pain medication to provide some relief with that, but there is nothing for fatigue. It just knocks you for six and stops you in your tracks, leaving you with no choice but to put everything on hold.

And with the New York trip around the corner, I just can’t let that happen.

For now, I’m just going to do as my body tells me and hope it’s enough to pull myself out of this sleep-hole, I guess it is working overtime to heal right now too.

Sweet dreams,

L

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Just a mini post.

I’ve had a couple of good days this week; not sure what I owe them to but hey, I’m not complaining.  Today I went on a bus into town for the first time in… well a long time!  I went with my boyfriend’s grandma and she moves at my pace so that was reassuring.  We had a wander round the little shops and then stopped for some lunch and a warm drink before heading back, but I was out of the house for about three hours and it felt good!

I’m tired now, but worth it tired.  Although, I think I did have a mix up with my painkillers – we were out when I was due a dose and I missed it and couldn’t remember whether I took it when I got back (brain fog), so just taking my next one before bed.  This means I could have missed a dose, or maybe two…oops. I’ll have to try and take one during the night because the other day when I missed a dose it took it’s toll the next day.

I’ve now got my pyjamas on, my feet up, with a lovely cup of Horlicks, watching a cute kids’ film called Marmaduke (a must see for any dog lover!), then it’s an early night for me.

All in all a good day; maybe things are on the up 🙂

L

Ps. I’m also blaming Mtx ‘Brain Fog’ for the fact that I poured water from the kettle over my cereal this morning, instead of into my teacup… :\

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