Tag: Chronic illness

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 🙂

MS and Fatigue

“Lazy Days”, or just days as I call them, are all too frequent with MS and fatigue. Don’t get me wrong, I love a feet up, popcorn and boxset day as much as the next person, it’s just that when they become a regular necessity that they start to lose their sparkle! I also get that this sounds a bit “my diamond shoes are too tight” and I do genuinely feel for everyone struggling with their daily grind. It’s just that my daily grind is different now.

Days for me generally start in the wee small hours of the night when I need to use the loo… See what I did there? 🙂 I then struggle to go back to sleep so I’m usually exhausted when morning comes. I take a muscle relaxant every morning to try calm the spasms in my legs but these make me groggy so I stay in bed till that wears off a bit. If I have no appointments or classes to get to then I usually spend the next few hours trying to convince myself to get up and eat something. And so it goes for the rest of the day.

It’s really difficult to make yourself do things when you know it’s going to be a struggle and you’ve woken up exhausted. Showering, exercising, going out or even preparing a meal become monumental tasks that you know you HAVE to do but just cannot summon the energy or will power for.

MS fatigue is not just tiredness after a bad night’s sleep. A rest and a nap won’t fix it. It’s more like wading through a bog, which I have experienced so I know what I’m talking about here. It feels like you are trying to function in a haze and even blinking is a chore.

So why this topic this week? Well I took a photo of Ed (the cat) and he just looks so exhausted. It got me to thinking, maybe cats understand MS fatigue. They snooze during the day, lie down a lot and are wide awake in the middle of the night. I have also noticed that they are prone to short periods of exertion and giddiness and then are laid out exhausted once again. Doesn’t that sound familiar? As I said mornings are generally not good for me but about 7pm I get a short lived burst of energy which I usually squander on something like trying to tidy up or hoover or some other task that I will inevitably fail to finish and then I’ll be wiped out for the evening, dejected.

So what’s the plan from here? Well I’m planning to try out a few things to see if I can regain control of my life regardless of tiredness. Some I’ve done before with reasonable success others I’ve picked up along the way from sources like my OT, the living well with a chronic illness course and others with MS. So have a look, see what you think or let me know what has worked for you 🙂

* To do lists – who doesn’t love a list and the sense of achievement when you tick something off
* Prioritising tasks – this month I’m prioritising exercise and eating a little better (lol, I’m having a cookie but I did some yoga this morning so that makes it ok, right?)
* Setting achievable goals – no point saying I’ll run a mile every day when walking is a struggle. I followed 2 seated yoga videos on YouTube today – much better
* Reducing the time I spend playing games on my phone and absolutely none when I’ve gone to bed (really bad habit!)
* Establish good bedtime routine – this one is from my OT. My routine will include diffusing lavender oil at bedtime and winding down before trying to sleep.
* Mindfulness – trying to live in the moment, be kind to myself and not make myself feel bad when I can’t do something

So I think that might be a good starting point. I’ll let you know how I get on 🙂

Life’s injustices

One of the biggest injustices in this world, in my opinion, is the fact that having a chronic incurable illness does not render you exempt from other illnesses. Ok, so it might not be the absolute biggest injustice, but just like Ed in the photo having to wear his collar so he can’t lick his latest war wound, it is pretty crap.

So what has brought on this line of thought now? Well I had a minor sniffle and cough last week. No I didn’t have the female version of “man flu” and wasn’t being over dramatic. The plain facts are that even a minor bug can trigger or exacerbate usual MS symptoms and make you feel pretty rubbish or even mimic a relapse. In my case last week my “cold” (it wasn’t even bad enough to warrant that word to be honest) meant that I was even more drained than usual, was struggling to sleep (thank you tickly cough) and as a result had less energy to do the things I need to do – like look after myself! 🙂

In MS the immune system behaves oddly and seems to attack itself and the body too much to have time to work on bugs and illnesses. My experience last week was just a tiny example of how extra ailments can play havoc with our lives. Factor in on top of all this the fact that most MS treatments dampen down the immune system and the misery of constant bugs seems inevitable.

But what happens when it’s not a minor bug? I had a vomiting bug, still only minor, but it caused such a big flare that I ended up on the bathroom floor unable to move and with no strength in my legs. These episodes are really scary and make you worry about the future and what could be.

Even still that is not as bad as it gets. I have known people with multiple chronic illnesses and this is where I think life is going too far. Some unfortunate combinations I have seen people coping with:
– Fibromyalgia and ME
– Diabetes and MS
– Cancer and MS

So I’m really not complaining about my 24 hour vomiting bug or my sniffle. That is small fry in the context of what could be. You just never know what someone else is going through so lets give each other some slack… are you listening life?? Enough already!