Disability – My Crazy MS 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!

Accessible Concert Tickets

In the days before MS I was a fairly regular concert/theatre goer. I loved seeing bands play live and our occasional trips to London to see shows on the west end was another favourite treat. As my MS has progressed and my mobility has become more troublesome the idea of undertaking any of these excursions has become more and more frightening. From experience I know that concerts and shows can mean public transport and a lot of walking to get to the venue, steps to get to your seats and crowds of people. That’s not counting the trek to the loo and the queues when you get there, which to be honest is a big issue for people with MS. Each one of these concerns individually is enough to put me off but, all lumped together, had me thinking that my concert going days were over. So much so that when Guns ‘n’ Roses played here I didn’t even entertain the idea of going although I’m a big fan and knew other people who were going. (I don’t entirely regret not going – did you see the rain that day!!)

A friend of mine is a massive Paul Simon fan and her birthday was in June. Paul Simon is on his Homeward Bound tour this year and was due to play Dublin on July 13th – the perfect birthday present. So I finally bit the bullet and purchased my first wheelchair accessible seating.

I’m not a regular wheelchair user. I’m choosing to persevere with the whole walking thing but as I can’t walk very far or stand for too long I am quite restricted. I borrowed my mum’s mobility scooter and booked disabled parking at the venue (RDS). As the scooter doesn’t actually belong to me I felt like a fraud when thinking about accessible concert tickets, but I definitely couldn’t have gone without it.

So how did we get on on the day? My friend was amazing, she helped me get the scooter out of the car and assemble it. I needed it to get from the car park to the accessible area, it was quite a trek. To be honest we spotted a lady in a wheelchair and followed her as we didn’t know where to go and didn’t see any signs to point the way. As it happened she was at the concert alone so we all sat together for the evening. She recognised quickly that I have MS as she has a close friend with it too. She has gone to many concerts so was a wealth of advice and really reassuring. I’m glad I met her.

I was really concerned about being in the accessible area but there was a kind of comradery there. Everyone understood their own difficulties and had empathy for each other. Any guilt I felt was entirely self inflicted.

Paul Simon was absolutely amazing, he played all my favourites and the atmosphere in the arena was brilliant. We swayed, tapped our toes (well my left foot did its best but the right was having none of it) and sang along at the top of our voices. I thoroughly enjoyed the day. The concert organisers gave each of us a bag with a bottle of water, a poncho in case of rain and a blanket if it got cold in the evening. I thought this was a lovely touch and the blanket really came in useful. It was a great experience to share with my friend, so much so we’re off to see Def Leppard in December 😀I’ve also booked seats for a show in the Bord Gais theatre – there’s no stopping me now!

So as usual I have a few things I’ve learnt that may be helpful or may quash some of the concerns that stop you booking accessible seating. I might have done it sooner if I had realised its not as scary as I had imagined.

Bring snacks or buy your food early, queues for the food vans were huge
If you are buying water they will take your lid, however a lady there was allowed to keep her lid as they said it was medicinally necessary, worth a try?
Don’t rush out when the concert ends, there are so many people leaving that getting around is more difficult. Besides if you have parking like we did they let the pedestrians go before you can drive out. We were sitting in the car for ages, better to stay in the grounds.
I can only speak about the facilities at the RDS but they had a designated disabled toilet, fully accessible, and a loo for just the disabled area, so not far away and no queue – brilliant
Don’t be shortsighted like me, I was warm so went to the concert in light clothes with a light cardigan for later. I was shivering by evening hence the free blanket was awesome

I’m always open to any thoughts or suggestions that could make my life easier so if you have any tips for concerts that work for you then please feel free to share 😀

So there you have it. My concert going days are not over. Yet again MS has tried to spoil things, but although I resisted the solution, I found a way round the problem. I’d still rather walk but whatever. Take that MS! 😠

MS and Travelling

Life with MS takes more time and consideration than life before MS and that includes travelling. Everything from planning bathroom stops on longer car journeys to accessibility in hotels. I have done my share of travelling especially with regular trips home when I lived in the UK. Ironically my two biggest trips came post diagnosis and were both to Hawaii with my 4 sisters. The trips were almost 10 years apart and each had their own MS related stresses.

The first trip involved travelling with Copaxone injections. I was so worried about going through security, especially in the US, and facing the question “Do you have any sharps or liquids?” – I had BOTH!! I had myself feeling like a criminal waiting to be quizzed, frisked or worse! I had letters from my neurologist and physiotherapist, I even had copies just in case. The reality was so undramatic I was almost disappointed. Nobody blinked an eye – apparently I’m not the only person who travels with medication. Who knew?

By the second trip last year my MS meant new problems to overcome. Different medication so no needles but weakness in my legs means I’m less mobile. I knew I’d struggle at the airport and was so worried I would be a burden and didn’t want to ruin the holiday. My sisters suggested assistance at the airport and a scooter while in Hawaii. I found this really hard to get my head around as I have been so adamant that I do not want to have to use a wheelchair and to keep walking. When we got to the airport I insisted I would wheel the chair through the airport and only sit in it when exhausted. We picked up the chair and were ushered to the head of the check in queue, with me pushing the chair. My sisters then, not so politely, told me to sit in the bloody chair as people were looking at us skipping the queue. Once I gave in it was plain sailing, other than my sisters driving skills! Honestly the turbulence in the chair was worse than the flight!

It was the same with the scooter in Hawaii. Once I got over my initial horror at needing such a thing I realised how much independence it gave me and that I didn’t have to miss out on anything. We had such fun with the scooter as everyone had a go especially the three point turns in the hotel room.

The trip helped me reduce the fear I have that I will eventually need a wheelchair. It won’t be a bad thing, just a tool to make sure I don’t miss out on life. I have even moved on and gotten a rollator so I can get around more.

It upsets me to think of how long I spent stressing about all this and how I could have enjoyed things more if I wasn’t so wound up. My sisters were great at diffusing my hangups and fears and we actually laughed our way through. In fact they all say they won’t travel without me as we got through the airports so quickly!