MS and the holidays

So, long time no blog, I haven’t been too busy or been overdoing the socialising thing so have no real excuse. I have to be honest, much like Ed in the photo, I was a reluctant participant in the recent holiday festivities, in any activities really – hence no blog posts. So here I am brushing off the cobwebs and trying to get back into the swing of things much like everyone else at this time of year.

I think that the holidays are particularly difficult with MS. I had a lot to deal with at the end of 2018 – relapse, new lesions and new mobility restrictions to mention a few. I’m not looking for sympathy here that’s just how it was/is. Taking all that into account my mood and motivation were understandably quite low (still are to be honest). Preparations for Christmas and New Year just seemed frivolous, tiring and kind of pointless. A lot of effort for one day. Bah humbug and all that.

That’s where the internal struggle came in. I didn’t want to feel that way or bring my loved ones down. I wanted to give thoughtful gifts, be caring and considerate but it all felt like too much of a struggle. In spite of all this I think I did ok, I had a good time and don’t think I bummed anyone out. So how did I manage it in the end?

  • Delegate, delegate, delegate – I passed off tasks to willing parties whenever possible, for example my husband put up and decorated the tree, I’m very proud of him!
  • Shop online – crowded shops and malls are no place for a grumpy person struggling to get around with a rollator
  • Shop earlier/later in the day – I actually started my shopping too late for the internet to save me as nothing would be delivered on time. I was therefore forced to enter the dreaded malls but kept to times when shops were just opening or closing so I mostly avoided the hustle and bustle.
  • Stop stressing about presents – people who care about me know my struggles and understand I won’t be treading the streets looking for the perfect gift. Besides people rarely complain when given a gift, not to your face anyway, so why stress!
  • Pre prepared food – my mum looked after the turkey and I ordered everything else premade from a supermarket. We only had to keep track of the timings of what went in the oven when and Christmas dinner was sorted. Very tasty too!

My final thoughts are on how I handle New Year. It is just a night like any other. If going out among the hordes to ring in the new year is your thing then more power to you. Personally I hate new year’s eve. Again too much effort for one night. I stayed home and watched a movie but that isn’t the problem. It’s all the talk of resolutions and plans for the next year that get me. MS makes planning a day ahead difficult never mind the coming year. If I’m not careful this time of year can bring a lot of negative thoughts about the restrictions and concessions I have because of MS. What could have been, what will never be and how bad can it get… Misery lies down this road so this year I have chosen to focus on what I am grateful for.

  • Mostly I am grateful for the people in my life – family, friends and the hubbie. They make me smile and keep me going. I won’t name names, you know who you are – you guys rock!!
  • My hospital care team. I know it is not the case for a lot of people but I really do like them and believe they have my back – keep up the good work guys
  • Music and concerts – I’ve been to 2 concerts this year that were brilliant and reminded me how much I love some bands
  • I love board games – a hobby that can be done while seated – awesome!
  • I better say Ed (the cat) since I use him to illustrate my moods and blogs

I don’t believe in new years resolutions but I do plan to continue to put my efforts into focusing on the good things in my life.

My crazy life getting crazier

So life just keeps getting weirder. I have recently had to accept that cleaning my home is beyond my capabilities so as I write this post I have a cleaner here for the first time. It is so strange to ask someone to clean my home when I’m here with no job and no big demands on my time.

Lots of people have cleaners, in fact the lady who is here is my friend’s cleaner so I know she is nice and does a good job. However when I opened the door to her I still felt the need to explain why I had asked her to come and to explain why I don’t just do it myself! My friend doesn’t feel the need to apologise for getting help cleaning so why do I?

I have been contemplating this as I hide out in my bedroom, feeling more and more guilty with every sound of cleaning. The conclusion I have come to is not that I am lazy (I am a bit) or happy to live in my own filth but rather that this is yet another compromise I have to make thanks to MS, another concession made for my illness.

In the grand scheme of things this is hardly a big sacrifice. It’s not like the time I had to use a walking stick, or the time I realised I was too unsteady with the stick and had to upgrade to a rollator. If I was well and able bodied I would probably still need a cleaner but I would be working and paying her myself in that scenario.

The guilt that plagues me while living with MS can feel crippling (maybe that’s the foot drop 😉 ) Sometimes I feel like a shadow of a person and less worthy as a result. It scares me to contemplate how many more concessions this disease will require of me. Each one is a painful little jab to your independence and sense of self.

Whilst all this is true and is how I’m feeling at the moment it is time to look at the big picture. My stick and rollator keep me moving so I am not housebound or isolated, my disabled parking badge is the envy of everyone I know and my grabbing stick is so cool I drop stuff just so I can use the stick to pick them up. All these things were difficult to accept at first but all have made my life easier in their own ways. It will be the same with this too eventually. Having a nice clean home without having to exhaust myself will be really nice and I won’t have to try tidying everytime someone comes to visit.

Right, I’m off to play with the cat – he has joined me in hiding 🙂