Life Update: Symptoms, Work, Home

It’s been a couple of weeks since my last post… I seem to have lost a bit of my blogging ‘mojo’, so to speak.  This is ironic, as I have a bit more time at the moment to blog due to being medically signed off work (as my Multiple Sclerosis symptoms are making it a struggle).  I’ve been dealing for some time now with high levels of fatigue and mobility difficulties (it is exhausting constantly feeling like you have to drag a heavy lump around, when it is actually just your leg).  Somewhat unsurprisingly, I guess, being off work has not lessened my MS symptoms… it has just meant that I am able to adjust my lifestyle and plan my days more to accommodate them.  For me, this means taking a daily nap  – I can guarantee that this will make me feel somewhat better and more awake for the night time routine with the kids, which makes me feel like a useful and present parent (when I often didn’t before!).  However, I still dream of the day when I will wake up refreshed after my nights’ sleep and not shattered, as if I have been rudely awaken in the middle of the night instead of the normal wake up time of 7am.

One symptom that has been rearing its ugly head more and more recently is spasticity – namely cramps.  I get woken by these in my calves, feet and toes and they are so, so painful.  I already take Baclofen (a muscle relaxer) before bed and massage my legs and feet with magnesium oil.  This helps, but I fear that it is the effects of these measures wearing off over the course of the night that leads to the cramps coming back with a vengeance, before I am ready to wake up.  I have been thinking a lot about and looking into CBD oil – so watch this space.  I have heard very good things about it, the price puts me off somewhat though.

Being off work has given me a bit more time to do the activities that I enjoy, like crocheting, reading, yoga and ‘housey stuff’.  I recently bought an iron garden table and chairs for a bargain price (I have to congratulate my Mum on her excellent haggling skills here!) with the sole purpose of sanding them down and repainting them.  I am sure it is going to look ace when it is all done but, you know when you start something and then can never see the end of it?  Yes, that.  The chairs have so many layers of old paint on them that it isn’t just an easy ‘sanding down’ job.  I’ll get there but good old fatigue creeps back in quickly, so I have resigned myself to the fact that slow and steady (with a few days’ rest if need be) will work in the end.  Allowing myself to rest when I need to means that I have been able to save my spoons for the most important thing: parenting.  Not always easy for any parent, I know.  But I have had the energy to take my little boy to his swimming lessons, which he is excelling in and to watch my daughter graduate from being a ‘Rainbow’ a ‘Brownie’.  Little things that I may have had to miss at other times.

So, what is happening with work?  I’m not completely sure at the minute… I did have an assessment with Access to Work, a government run initiative to help people get into and stay in work if they have a disability.  The lady was lovely and very helpful but she can basically make recommendations, not decisions – those come down to my employer and the person in charge of my Access to Work application.  She recommended things like disability buttons to open doors, which would certainly help me mobility wise.  But, as I struggle with fatigue on a daily basis, and this is what I find is perhaps my biggest barrier to working the hours that I do, it is unclear what, if anything, might help with that.  Unfortunately, I have been told that I am unable to reduce my hours due to the level I am at and the needs of the service.  Not to mention, reducing hours would have a very negative effect on my eventual pension.

So, that is my update for now.  Some uncertain times ahead with work and I am frustrated over my symptoms, but one thing that I am very grateful for is the time I have had recently for my family, even if it is just mundane, everyday parenting tasks!